Molly Elizabeth Brown

The End of an Era

2008-08-07T08:37:00.002-04:00

Ok so that may be a bit dramatic. I don't know 157 posts over two years, four months and 25 days counts as an era? Semantics.

At any rate, as many of you know, there has been something of a hiatus in this space over the last several months. There are a number of reasons for this. I am going to make the conscious decision not to share these reasons with you right now...except one. I didn't want to "hijack" Molly's space.

At first I thought it would be ok to just sort of leave it alone. Eventually I would forget that this was therapeutic and all my loyal readers would move on and find other places to visit. Thankfully, neither of those things have happened.

I have recognized how much therapy this exercise brings, and I have been asked more than once when I'll start posting again. In the spirit of both these findings, I have decided to end this particular blog and begin a new one.

I welcome you all to visit Because I Never Got a Chance to Say Goodbye... Hopefully the first post will be there soon, and it should give you a little background on what and why.

Until then. Thank you all...for everything.

A Day "Off"

2008-07-08T09:36:00.001-04:00

Again, this is another post drafted long ago. This, however, is incomplete and was drafted while Molly was still with us. It was originally intended to describe the course of a normal day at home; all the tasks which my angelic wife so ably performed for our children. What it was not meant to do was sound like me complaining; in hindsight that's what it sounds like.

Sadly what sticks out the most is that it was less than one week before Molly died and she was as happy as ever. I remember the scene in the doctor's office like it just happened - and I would bet a paycheck Dr. Paul would say the same thing.

March 7, 2008
That's right I stayed home from work last Thursday.

Erin called me Wednesday to say she wasn't feeling well so I came home in time to pick up Gavin from school. I did my best to tend to the little ones for the remainder of the day, including a dinner date with the Hilton Head Browns over at Margot's parents' house. Erin has Molly's feeding schedule and medication doses and timing memorized. I am not so fortunate, so as a child of technology I went ahead and started putting all that pertinent information into my iPhone. Now every time something important has to happen for the Bear, I get a reminder. At any rate we had a nice visit with the Browns and ultimately everyone was very well behaved...and I didn't screw anything up.

So I stayed home the following day to continue helping with the daily grind. Erin stayed in bed for most of the morning and then stayed on the couch for the afternoon. Whatever she had is long gone now, but for the last couple days it took a lot out of her. But here is the point: on my "day off" I sat down for the first time at about 7:30 pm and when I did so it was in a barely conscious lump on the couch.

I love the minute by minute account so let me attempt to accurately describe Thursday, March 6, 2008:

4:30 - wake up to give Molly her first dose of medicine [this is a new thing we decided on at the GI Tuesday; she thought if we could get Molly her reflux meds earlier then it may prevent her from that sole episode of spitting up we were so perplexed by every morning. So far it has worked.]

7:00 - Gavin comes down and wakes me up.

7:30 - After 30 minutes of fading in and out between conscious and not so much, each segment of conscious filled with Gavin begging for breakfast, I head to the kitchen. I start to make coffee and realize we only have enough to make one cup of coffee. Then I pour Gavin some cereal and cover it with the remaining drops of milk.

7:35 - I start making a grocery list as he eats his breakfast.

7:50 - Get Gavin in the shower. Around this time I also start the first load of laundry. [Keep in mind in our house a "load of laundry" actually consists on three: the one coming out of the dryer to be folded; the one moving from the washer to the dryer; and the one being sorted and put into the washer. I only mention this because I will likely leave out the future details of this process except perhaps to mention that it went on almost constantly all day until I folded the last stitches of clothing at around 7 pm.] It's also around this time I get Molly's first feed started.

8:05 - Get Gavin out of the shower and dressed (that's correct, he takes very long showers). Now of course at this point I do not realize how busy my day is going to be, but as I get his clothes out I realize I need to add another task to my list: getting him new pants because all of his have holes in them. This is also around the time I start to get frustrated with him for not wanting to wear exactly what I hand him. Until I listen to his argument and remember what it was like to be little.

[Basically I handed him a pair of solid navy blue boxer briefs. He starts whining about how he doesn't want to wear them because they're not comfortable. I tell him they're exactly like the sports ones but without pictures. He continues to whine and proceeds to tell me he doesn't like them because they have no pictures on them. I explain it makes no difference because his clothes will be covering them. Then after some back and forth he comes clean with, "but when it's potty time the other kids will see them." How could I have been so dumb? Obviously you don't want to be the only kid whose drawers don't have pictures on them. Just like when you're about eight and you don't want to be the only kid whose do.]

8:15 - check some emails and check in with the folks at work. I suggest to Gavin we get going early to hit the grocery store before dropping him off at school. Gavin is nothing if not a creature of habit and he wants nothing to do with this pre-dropoff grocery store run. Erin reminds me Molly has a doctor appointment at 9:30. This is not in my Calendar. I try to mentally work through the fact that something could actually be scheduled AND attended without being in my Calendar. This phenomenon makes me uncomfortable.

8:40 - we're out the door to school. Gavin promises to have a good day even though he is not sure how he feels about me picking him up two days in a row. He has been begging me to pick him up at school for months and now that I am going to do so two days in a row he is not buying into it. It seems picking up is something Mommies do.

8:50 - As I drive away and check my Calendar for instructions on what happens next, I ponder where Gavin could possibly get these habits from.

9 - Back at the house briefly while I change Molly's clothes and get her ready for the doctor. This includes stocking the diaper bag, bringing a change of clothes, getting her coat on, loading her into the car. All of this takes nearly 20 minutes. And then we're off to the doctor.

9:25 - "Welcome to Dunkin Donuts can I take your order?" I started to drink that one cup of coffee without milk a couple hours ago but coffee makers just aren't designed to make a good single cup of coffee, and it's impossible to drink mediocre coffee black.

9:30 - Dr. Paul's office is completely empty and we sign in and go to the exam room immediately. We wait a total of about five minutes before he comes in to check on her. He comments how Molly is more animated than he has ever seen her before. He leaves the room for a few minutes and returns to see Molly cracking herself up on the table. Dr. Paul has never heard Molly laugh before; I think this makes him happy. After the second of two needles goes into her legs she lets out a loud scream; this he has heard before.

10:05 - Drop Molly off at the house and head out to Target and the grocery store.

10:30 - Wandering aimlessly through Target buying things from my grocery list that I'd think would be less expensive in Target, and pants for Gavin. And the first two Harry Potter books (I've read them all now, but I want to start over and I borrowed the first five from a friend - so now I have to buy them).

10:40 - At an otherwise empty deli line in the grocery store. This is apparently the time to do your grocery shopping. And up until now I thought it was normal to pull the number thirteen digits higher than the one currently being served.

11:05 - As usual I have spent just over the weekly budget for what appears to be very little food.

11:15 - Unload the groceries; check in at work; revisit the laundry; check on Molly's food and meds. She and Erin are resting in front of the TV downstairs.

11:45 - Pick up Gavin from school. [Gavin has to be conscious of his behavior at school so we have started a rating system with his teachers: a plus is worth two, a check is worth one, and a minus is zero. The total at the end of the week determines how fabulous/mediocre his reward will be. This is the first time I have witnessed the negotiation that takes place to determine the day's mark.] Plus day for Gavin.

Noon - We're working our way through the aisles of Blockbuster to find him a good movie to watch. We discuss the merits of 101 Dalmatians vs the Backyardigans Secret Agent movie he has already rented once before. We secure 101 Dalmatians and head home.

12:15 - Make Gavin's lunch; attend to more laundry; check on Molly's food supply.

12:50 - Put Gavin in for his nap. I now have a good chunk of time to get some things done. Some of the fun things I choose to do: fold three loads of laundry that have accumulated; put clothes away; check in at work.

...there is/was obviously more to this day, but I don't remember it now.

What Happens Now?

2008-07-07T08:50:00.003-04:00

It's been months, I know. I drafted this post below a long time ago. It was meant to be sort of a sign off. Or at least to announce a hiatus. Since I never posted it, it probably seems as though I have just disappeared. I am quite certain you all understand why this is. But in the spirit of honesty, and in an attempt to transition back into this thing we do here, I give you my farewell post from three plus months ago...

MARCH 31, 2008

I've been hesitant to post anything because I am not quite sure what the purpose of this space is anymore. When it started it was a place to update people on Molly and her challenges, progress, milestones. It casually slid into a space for those things and general Brown family challenges, successes/failures, milestones, etc. All along, however, it was about Molly.

It is and always has been Molly's space. Sure, I throw in a random post now and then that seems to have very little to do with the Bear, directly, but it would still be immediately brought back to where it belongs.

What happens now?

I've also been hesitant to post because - well to be honest - I am bitter. I am sad; and angry; and disappointed. I'm tired. And I have no idea what I am supposed to write.

I miss my little girl. How many different ways can I say it? How many different posts are really necessary to articulate that?

Sure, we have happy memories. Tons of them. Those are what get me through the day. Those are how I get out of bed in the morning; how I sit in my office and smile; how I carry on a normal conversation with someone.

This has always been the space where pure, unadulterated honesty slips through the cracks. It's always been a safe place for vulnerability and curiosity. For some reason I always felt like I could write things here that would never be said or done in "real life."

So now what? I am supposed to just complain about how unfair this is? Post all the things that I see on a daily basis that remind me about the little Bear I should be tucking in at night rather than blowing a kiss to in an empty room? Honestly, does anyone want to read that?

So, seriously, what happens now? I'd say for the foreseeable future there aren't likely to be a whole lot of posts. If something of interest pops up I will certainly get it up here, but as for regularly scheduled updates or random thoughts...I am not so sure. Because, since this is the place for unadulterated honesty, currently the real me may actually be easier to be around than the blog me.

Finally: Video

2008-04-04T08:13:00.009-04:00

Thanks to one of the top five women in my life to whom I am not married/related for helping me put it together, and to the Admiral's parents for getting it uploaded, I finally have video to offer. I'd say this is one of those things I wish I would have done sooner, which I have been saying more often lately...

Part 1 of Molly's slideshow:

Part 2 of Molly's slideshow:

Part 3 of Molly's slideshow:

Part 4 of Molly's slideshow:

Part 5 of Molly's slideshow:

Part 6 of Molly's slideshow:

Heartfelt Thanks

2008-03-19T12:28:00.003-04:00

A quick note of thanks to everyone who has: sent flowers; called/emailed/mailed cards; posted comments/signed guestbooks; made contributions in Molly's memory; bought/delivered/sent food; hung out with us until the wee hours of the night and/or morning; and any other show of support I have left out. We are so thankful for the love and support of all our friends and family and we can't thank all of you enough.

Those of you who were able to take the time to join us for Molly's memorial service yesterday, we're glad you were able to share Molly's farewell with us. It was a special day for our family (albeit sad) and we were touched by all the visitors. I know some of you traveled a great distance, and I hope we had a chance to fully express how touched we were by that.

I am working on getting Molly's slideshow posted on this site, but for some reason it is giving me trouble right now. I'll keep working on it; it keeps me busy.

2008-03-14T16:19:00.000-04:00

It is with indescribable sadness that we report the sudden and unexpected passing of Molly Elizabeth. Last night at about 7:30, while sitting on Erin's lap at the dinner table surrounded by loved ones, without a sound or the slightest hint of discomfort, Molly's heart simply stopped beating. Police and paramedics responded immediately, CPR was administered, and she was rapidly transported to the hospital in Princeton. Emergency Room personnel admirably attempted to revive her for over thirty minutes. She never regained consciousness after that silent goodbye at the table.

A memorial service will be held at St. Anthony of Padua in Hightstown, on Tuesday, March 18 at 10:30 am; interment will follow at Holy Cross Burial Park in South Brunswick; then a gathering of friends and family in the hall at St. Anthony. All are welcome.

As this will be a celebration of Molly Bear's life, please don't feel the need to wear black.

In lieu of flowers, contributions can be made to the Trisomy 18 Foundation in Molly's memory: 4491 Cheshire Station Plaza, Suite 157, Dale City, VA 22193.

It Only Seems Long Because It's a Leap Year

2008-03-04T07:31:00.004-05:00

That's right, it really hasn't been as long as you think it has since I posted something. It's just that since it's a leap year it seems longer.

So Molly has been doing well since her discharge from the hospital. We're having some trouble with her feeds, as usual, but otherwise she is fine. Today she has an appointment with the GI, so maybe she can give us some ideas on what else to do. We appear to have tried everything; we're not doctors.

It's too bad we're not doctors because it would come in handy with all the bugs currently going around. The weekend after Molly came home from the hospital, I was knocked completely for a loop by some variety of a bug. I didn't have the high fever that is supposed to go along with the flu, but I did start taking medicine as soon as I felt the first symptoms. At any rate, I came home from work on Friday afternoon (the day of the "big snowstorm"), participated in a snowball fight with Gavin and Erin, and then by dinner time I was asleep. Save for the occasional trip downstairs to fill my water, I was pretty much asleep until Sunday night around 9 pm. I was incapable of standing up for longer than a few minutes. My whole body hurt (most notably my fingers as I tried to change the channel using the TV remote) and I was flat-out exhausted. Fortunately it was also the weekend of the NFL Combine so I had something to watch each time I woke up for a short time. I even stayed home from work Monday, which I rarely do.

When I got back to work everyone in my office was out. Some of them are just now recovering. Thursday and Friday of last week I was literally the only person here out of a group of five. I am just hoping whatever we all had was the same thing so I don't have to worry about getting it again.

Miraculously (mainly because I was banished to the bedroom and Gavin and Molly stayed far away and Erin slept on the couch) the rest of the Browns have managed to stay healthy. Let's hope that continues.

At the end of last week Molly had a swallowing study done. Specifics can be more efficiently provided by Erin, and I am sure she will offer those to you once she has a free moment. Basically the test was to determine if Molly could try to safely consume foods orally. Apparently the test had positive results, because Miss Molly has been trying all sorts of pureed foods these days. As expected, she doesn't like many of them.

Speaking of safely consuming foods orally, Gavin is off the Life Savers for a while. Last week one managed to slide down his throat, intact, and become lodged in such a manner that while he was still able to breathe (thanks to the hole in the middle of the Life Saver, no doubt) it would not move in either direction. At the point where he confirmed he could not really breathe and started reaching down his throat for the object, I went ahead and forced it out for him. One might think it's a good thing I have CPR and First Aid training, but I will offer this pearl of wisdom: even if you don't "know the heimlich" go ahead and give it a shot. I've practiced it on a dummy a hundred times and the one I gave Gavin was nowhere near perfect technique - and it worked just fine.

Then just this past weekend we celebrated Ethan's baptism. He and his mom and dad came up from Houston and all the Logan/Murphy/Ely/Johnston clans converged on the Plainsboro/Princeton Junction area to celebrate properly. Gavin and Molly got to see their great grandparents from Ohio, who they rarely get to see. It was a nice day. Somehow we even managed to get the church to ourselves. When Gavin was baptized it was the same thing. Normally the service involves many babies all at the same time, but somehow we've managed to have two in our family where we've been the only people there. Maybe the folks in the church know more about us than they let on, and it was planned that way?

Family time continues this week as the Browns have recently arrived from SC for a short stay. While I wasn't paying attention my eldest cousin, Meghan, whose birth I clearly recall happening like five minutes ago, went ahead and turned 17. Apparently she needs to look at some colleges, so the whole family is in town to visit some local institutions, not the least exciting of which is her parents' alma mater and my current employer.

In recreational news Team Molly Bear 2008 is forming as we speak. I sent a recruitment email out the other day to folks who had indicated they may be interested in racing this summer. If you didn't get the email and you think you're up for a run or a tri, please let me know. We have eight confirmed members already, five of whom are new. Keep an eye out for promotional materials arriving in your Inbox in the very near future. Meantime check out the Team Trisomy 18 link to the right if you're curious what the 2008 schedule looks like.

This seems like quite a long post. As an experiment, I am not planning to reread this or spell check. Feel free to edit on your own time.

Molly is Home

2008-02-21T16:19:00.002-05:00

Sorry it took me so long to post this. Been a long day. More later.

Back at RWJ. Again

2008-02-18T09:00:00.002-05:00

Molly was terribly unhappy on Saturday evening and ended up not sleeping much all night. Sunday morning she had a 105 temperature, so we took her to the ED at RWJ at around noon. We spent a casual afternoon having blood drawn, a couple x-rays, and aurine sample taken, while squished in a crowded pod with a tiny television. Around 3:30 they moved us all to the five-star accomodations on the pediatric floor. We've been there before. Molly is like a rock star up there: everyone knows her.

At any rate it appears she has a urinary tract infection and she'll be in the hospital a few days, at least. They're waiting for some blood culture results to determine if the antibiotics she is on will suffice, or if they'll need to change to another. But that's essentially the treatment: Motrin for fever; antibiotics for infection.

That's basically it.

Bright and Early at CHoP; and Gettin' "Stuck"

2008-02-12T20:03:00.001-05:00

The alarm went off at 4 am this morning. Of course, we still didn't get out of the house until about 4:55. It takes about an hour and fifteen minutes to get to CHoP; we need coffee; we've got an hour and five. As one would expect, since we're in a hurry, there are two cars in front of us at the DD drive though - the first of whom is clearly ordering a custom breakfast sandwich that has to be delicately prepared by the lone employee manning the entire place. We then proceeded to hit three straight red lights, all of which appeared to be red at the same time as the intersecting light. I had a slight sense the day was going to be less than stellar.

But miraculously, somehow, through some stroke of absolute miracle [I didn't go less than 80 the whole way], we made it to the hospital with four minutes to spare.

There was no reason for anything to be delayed at that hour, so we anticipated Molly going in for surgery at about 7:15. The only thing that could hold her up - and has before - was her IV. She is what the nurses refer to as a tough stick. We remind the nurse this is the case.

She pages an all-star.

He gets the IV in on the first try and tries to sell my wife on the concept of a wall-mounted flat-screen TV.

Definitely an all-star.

Molly went out right on time. They told us the procedure would be fast, and it was. After we sent Molly off I went down to the cafeteria for a couple bagels and a coffee. I went straight back upstairs to meet Erin. Before we had finished eating our bagels they called to tell us she was out and recovering.

We joined Molly back in prep/recovery. We were keeping a close eye on the time and the weather because we didn't want to get caught in traffic or the "snow storm." It looked like we were going to get out reasonably early.

Then Molly woke up.

And then she threw up.

After a little while she fell back to sleep and was resting comfortably for several hours. Eventually we got her to keep some fluids down and they agreed to let us go home. We were walking out of the hospital at around 1 pm apparently beating traffic, snow storms, and historical precedent.

All in all, quite a good day. We actually pulled off an out-patient surgical procedure. Amazing.

Then we got home. And here is where the day became just plain swell.

It looked like it was going to work out nicely, since there was a box on the step for Gavin. I got a new pair of running shoes in the mail yesterday and Gavin wanted to know why he hadn't gotten any packages lately. So this was quite a welcome turn of events.

Erin walked in and checked the voicemail. I grabbed the US mail. As she listened to the messages, I went through the pile. In the span of about 30 seconds the following took place:

1) I got called for jury duty. I can probably get out of it, but seriously, is there a more clear symbol of bad karma?

2) I was denied for a loan I didn't apply for. I presume it was because I talked to the loan officer about potentially refinancing and then never got the paperwork done, but I really have no idea. In any event, it was nice to see the bank I've been using since 1997 stand behind one of their loyal customers.

3) Our new insurance decided to no longer cover Molly's formula. Not a huge deal, I mean I guess we shouldn't have gotten used to someone else paying for Molly's food anyway. But it was a nice stipend. And remember, when I say new insurance I mean new six months ago. So I'll have to assume this denial will be accompanied by six months worth of bills.

"Yes, hello, I have a 3 pm appointment to see 'The Man'."

"Right you're scheduled for the 'kick in the groin and steal your girl?' Go right in he's expecting you."

But let's look on the bright side. We're home and Molly is feeling much better. In fact, as I type she and her big brother are sound asleep. And I will soon follow.

Thanks to all of you who called/sent emails and texts to check in today. We appreciate you all looking out for us.

Oh yeah, and since I know you've all been on the edge of your respective seats since last Wednesday: I gave up procrastination for Lent. Friday

An Afternoon at CHoP

2008-02-08T07:48:00.000-05:00

So much better when it's just a couple hours. And even more so when it is pre-planned and non-emergency. Of course, it's still a hospital. And it's still in Philadelphia.

I don't miss making that drive. Let's hope we can continue to avoid needing to do so.

But I did get to wear a Super Bowl Champs t-shirt into the city of "brotherly love." It's like someone offering a ride on their private jet: you'd be foolish to pass up the opportunity.

So the Bear is scheduled for the surgery to have tubes put in her ears next week. We've been informed it's a "day surgery" and we should be on our way home in no time flat. We will likely have to be there at about 6 am; they'll prep her for the procedure, which reportedly takes all of 15 minutes; and then she'll have to recover for a few hours. Try to imagine our excitement if all actually goes this smoothly. Fingers crossed.

Her vitals were excellent yesterday. All the numbers looked good, her lungs sounded good, she was happy and well behaved.

We actually had the same nurse practitioner prepping her that we saw before the catheterization in October 2006. Needless to say she was taken aback by Molly's progress and demeanor. I hate to put words in anyone's mouth but I would be shocked if she thought back then she'd be seeing us almost a year and a half later for an elective surgery.

Of course, all kidding aside, it's still surgery and Molly is still delicate. The procedure is short, but if her breathing isn't stable once they anesthetize her, there is a possibility they'll need to open up her airway. This is never an easy job, since her airway is so narrow. And there is always the possibility once this happens that she won't go back to breathing on her own. There is a chance of this happening to anyone. But, obviously, odds increase as a result of Molly's somewhat unique genetic makeup.

But they don't really talk about that much, because it's so unlikely. We, like many other things medical, are just sort of keen to it because if our experiences.

At any rate, let's hope Molly stays healthy for the next few days so she can go in as scheduled, and have all that extra strength. We'll keep you posted on her, ovbiously.

"You Can't Win."

2008-02-05T09:05:00.000-05:00

C'mon you know the scene: Right before Rocky storms out of his Main Line mansion [I know I wish he lived in North Jersey, too, but I didn't write the movie and they had to make him a Philly guy for the sentimental attachment] to drive his Lambourghini recklessly through the streets, his condescending and pessimistic wife tells him all the reasons he is crazy to fight the big, mean Russian who has just killed Apollo, culminating with the dramatic (and high-pitched), "You can't win."

So it's not a perfect football metaphor, although brilliantly written amidst mid-1980s Cold War tension, but as a Giants fan I've got to say I felt a bit like Rocky walking into the ring against the overpowering, genetically superior, and thus far perfect New England Patriots the other night.

We hung tough with them on Dec 29, losing by decision after a 15 round battle. We used the momentum from that game to catapult through the playoffs, beating the two best teams in the NFC (two of the three best teams in the league). And finally, somehow, after establishing ourselves as a legitimate contender, upended the "best team in the history of the NFL" - the undisputed heavyweight champs - with a flawless defensive scheme designed to pressure the unflappable Tom Brady, and another solid effort from our coming-of-age-before-our-eyes-QB-of-right-now.

I'd be lying if I said I knew we could do it all along. Hell I picked us to go 4-12 at the Draft Party back in April. I was nervous going into the Tampa game; I had a good feeling about Dallas; I was scared of Green Bay. Once we got to the Super Bowl, "I am just glad to be here. Wanted to do my part and help out the team." Seriously: Super Bowl runners-up; the 19th game ending in a win for a perfect team; a gutsy Giants squad who won 10 straight games on the road, including one in a European country on the hallowed grounds of Wembley, one in the hostile environment that is Dallas, one on the frozen tundra of Lambeau in the second coldest game of all-time! I mean c'mon, how could I be disappointed with that season?

The Pats were perfect. They set records in just about everything. They're a dynasty. I'd be lying if I hadn't thought "we can't win."

But then a funny thing happened at the end of a 60 minute battle. Don't get me wrong: some loose balls bounced the right way; some wayward passes fell shockingly incomplete; a QB refusing to lose somehow breaks four tackles to loft a ball downfield where a special teams expert/# 4 WR makes amazing use of his helmet during the gutsiest drive in recent SB memory (surpassing the drive Brady and the Pats had just completed moments earlier).

And we get to spend the next year as the Super Bowl Champions.

But what am I going to do for the next seven months? Ah the wonders of DVR.

Healthy - Sick - Healthy

2008-01-29T08:16:00.000-05:00

So Molly was doing well after kicking that nasty cold she had just after the new year. Last week when we went for shots she was fine. Then Thursday when we went to the GI she had a fever. As the days went by the fever went up rather than down and we returned to the pediatrician to find she most likely had a stomach bug.

The stomach bug caused her to dislike eating a bit, so we had to get back to the GI to find out how to alter her feeds appropriately - you see how these things spiral?

Well now she is back to healthy. At least she appears to be. She is happy and vocal and really that's how we measure her health these days.

The Bear has some big days coming up in the next couple weeks so, as always, please keep her in your thoughts and we'll keep you in the loop.

On Feb 12 she is having tubes put in her ears: this should be a fairly straightforward procedure, and hopefully we will not need to spend more than a day in the hospital. One never knows, however, so we'll just keep our fingers crossed. We're hoping this helps Molly's hearing and it will certainly help the doctors' ability to see into her ear canals to check for infections, etc.

On Feb 22 she is having a swallowing study done to ensure that she is swallowing safely. She had a feeding evaluation last week where the facilitator was very positive about her capability to progress toward solid food. We have some work to do to get her to that point, but if all goes well with the study we can start moving that way.

And in case you haven't been paying attention, the Giants are in the Super Bowl. Patriots fans need not visit this space until further notice.

I Was Minding My Own Business, I Swear - Part 2

2008-01-29T08:10:00.000-05:00

Last November, during one of our CHoP visits, I was accosted by an Eagles fan in the cafeteria. I was minding my own business, I swear. I was in Philadelphia. I was wearing a Giants hat. It was the middle of the season and both teams were very much "in it". I tried ignoring the guy, but there comes a point where you just have to say something. It was all in good fun.

A few Sundays ago, in the bagel place near our house, I truly am minding my own business. I am standing at the front of the line waiting for my bagels; I am rocking that same flex-fit sideline cap from a year ago; I am anxious for the 4 pm kickoff in Dallas even though it's hours away. In a strange dialect I hear someone behind me mumbling about "choking" and "Manning" and some other such things. It reminds me how annoying the Cowboys really are. They're like the Yankees: basically someone in every corner of every town in the entire world claims their loyalty. It's bad enough I have to live right on the border separating Eagles fans from Giants fans, but now I have to be reminded of "America's Team" spanning all corners of the universe.

I glance behind me casually to see the store has filled up, as it does on Sunday mornings. One customer has an odd grin on his unshaven face hidden slightly behind knockoff Dolce's. He seems to be looking in my direction. But I turn back around without a word.

I can still hear him talking that nonsense. And now he has gotten another person involved who seems to speak the native language more clearly. They're absolutely discussing the very game I am anxiously anticipating. But I don't care. In a few minutes I will be back in my house, surrounded by Giants fans, enjoying a warm bagel.

For some reason it is taking a long time to get me my order. The rest of the line is moving quickly. Now I feel two eyeballs peering at me just over the top of those fake Italian shades. I am ignoring him. I refuse to even look that way.

"Well we'll see you in the offseason tomorrow," he says. The words come out slowly, but relatively clearly. It seems his brain does not process these words as quickly as those in his own dialect. It was then I realized I had heard this accent before and all rationality escaped me.

"What are you an Eagles fan?!" I said.

His foolish grin widened; his head nodded.

This is my neighborhood! This is not Philadelphia! Granted we live right on the border, but we're on the north side. Eagles fans should be going to bagel places in Hamilton. They don't deserve the high-quality, perfectly crusted, round dough of Hot Bagels. I simply must be imagining things. Not to mention we're talking about the Divisional round of the playoffs...a game taking place roughly six weeks after the Eagles season unoffically ended, and two weeks after it literally ended.

"Sorry about that." I say as I finally collect my order and walk toward the exit.

"Yeah we figured it was about time you guys won one."

This is now the second thing he has said clearly enough for me to understand, but also the second thing that has made virtually no sense.

And then I notice he is following me out the door.

The rest of the conversation was quick and painful, each of his comments sending me further and further into a pit of hatred for all those pledging allegiance to the dirty bird of south Philadelphia. And for that matter the Flyers, Phillies, Soul, Ben Franklin, Vince Papale [Ed. note: even I can't root against Rocky], Dave and Busters, Robbins 8th and Walnut, whatever...and it basically just consisted of me pointing out reasons - rooted in fact - why the Giants were superior, and him mumbling things that were barely complete sentences in response.

Me: "Right since those two Super Bowl wins don't measure up to your two appearances."
Him: "Your QB stinks."
Me: "Your QB has been overrated for eight years, and can't complete a season."
Him: "He wins when they count."
Me: "Like those three straight NFC Championship games he lost or the Super Bowl where he threw up in the huddle?"
Him: "He owns the Giants."
Me: "1-1 in his career against the Giants in the playoffs and Garcia actually played in the win."

The moral of the story is that I would never talk trash to a total stranger simply because they are wearing clothing supporting a team I hate. And I am certainly smart enough to know I have no leg to stand on when my team is no longer playing. My preference is to say nothing. But there comes a point where it's just too daggone hard to be quiet.

And the important thing to really take from this whole experience is it's now been a solid two months since the Eagles played a game that mattered, and the Giants have won two since this little exchange. With one more to go.

And please get your bagels somewhere south of my town.

Big Shots

2008-01-22T10:32:00.000-05:00

I was off Monday so we took a family trip to the doctor's office. I figured since Erin always has to take Molly by herself it would be nice to give her a break. Of course, since I had to drop my car off for some work and I needed her to give me a ride, she didn't actually get to stay home. So the least I could do was give her a break from having to go back into the room. So while Molly and I hung out waiting for the doctor, Erin and Gavin played in the waiting room.

Molly weighed just over 16 pounds, which is about what she weighed last time. She was in great spirits, and actually was giggling and smiling for the doctor while he was checking her out. And then came the fun part.

He gave her three shots. And they hurt.

Let me tell you, Molly has some lungs on her. I'd be surprised if anyone within a mile of that office didn't hear her scream. It was loud and she made it clear she was not a fan.

But aside from that all is well. Molly has been sneezing less and sleeping well. She has been happy and energetic.

In a couple minutes I am actually meeting Erin and Molly at the doctor over near the hospital. She needs to have a follow up on her belly after the incident from last month. Everything has been working normally, and she has slowly been increasing the volume of her food. So this appointment should be nice and easy.

Molly and Erin had a feeding evaluation done yesterday and it seems all went well there. I am sure Erin will write more since she was there. So keep an eye out.

And if you haven't been paying attention, the Giants are the NFC Champs and will be headed to Arizona to play the thus-far-perfect Patriots. We played them tough back in December so I have to hope we can do the same this time around. A good game would be nice; a blowout victory our way would be even better.

Toronto Isn't as Cold as You'd Expect (Jan 6, 2008)

2008-01-08T08:54:00.000-05:00

I was home from Toronto this morning before 9:45 am. Getting up to go to the airport at 4:30 is tough, but when it gets you home with a full day ahead of you it makes it all worthwhile.

As anticipated, Erin had to cancel. This is unfortunate because I would have liked for her to be there with me but more so because now we have to find a way to reissue a ticket that is one way on Air Canada and the other on US Air. Not a whole lot of options there, I guess? Seems like we'll be taking a long weekend to Canada at some point soon.

The weekend was a huge success. 8,000 Knights fans made the trip north of the border to participate in numerous University/Foundation sanctioned events, and watch the football team completely dismantle an over matched Cardinals team.

I managed to have a lot of fun while working the majority of the time, and I still also managed to get some sleep. Of course, being on the road did not get me back to good health.

Big Giants playoff win this afternoon. Next up is Dallas down their way. Keep your fingers crossed. Nothing would make me happier.

Well, obviously, I'd also like Molly to get better. She seems to be doing just that. Hopefully she is on the back side if her cold and will be her normal self again soon.

Happy New Year (Jan 2, 2008)

2008-01-08T08:47:00.000-05:00

I'm back at work for the first time since Dec 22 and it feels like I have only been out a couple days. I'm still really sick and not looking forward to getting on a plane tomorrow (luckily it's only an hour flight) with sinus congestion.

Molly is still very congested as well and she has not been sleeping well at all. We've started to give her supplemental oxygen at various points during the day and all night. She is still on antibiotics, and she is still getting regular nebulizer treatments. Hopefully the combination of all these things is going to help move things along, although at this point it seems unlikely.

For New Year's eve this year we decided to make it even less eventful than we usually do. We grilled a couple steaks, drank a few glasses of wine, and all went to sleep well before midnight. Gavin and I had a sleepover on the couch downstairs. He has been asking if he could do that for months and since I have been sleeping on the couch for what seems like two weeks no it made sense to go ahead and do that. He and I both woke up around 4 am and he wanted to know when the ball would drop. I told him we missed it by a few hours and we'd have to wait until next year - when we'll record it just to be on the safe side.

At any rate, despite Molly's current displeasure, we have a lot to be thankful for as we say goodbye to 2007. Overall it was quite a successful year and we couldn't be happier. We're looking forward to another great year in 2008 and, of course, wish you and yours a healthy and happy '08 as well.

A Giant Disappointment (Dec 30, 2007)

2008-01-08T08:17:00.000-05:00

I started to feel a little sick on Tuesday evening. I knew something was wrong when I was sitting in the living room at the Logan's house, in front of a huge, roaring fire, freezing. Then I woke up Wednesday and there was no doubt. I spent the majority of the day Wednesday on the couch, and I even slept there Wednesday night. By Thursday afternoon I was feeling a little better and then Friday I thought I was pretty well healed.

Of course, then Friday night Molly woke up in the middle of the night not feeling well. And when I say she woke up I basically mean she was jarred awake by some pain and/or discomfort just after midnight, and she didn't close her eyes again for a number of hours.

Saturday I went to the Giants vs. Pats game with Rob. While the overall takeaway is that we almost ruined a perfect season and we played really well, the day as a whole was wrought with disappointment. I'll spare you the long details, but share the list: the western spur of the NJTPKE was closed forcing us to take a bizarre route through Seacaucus that we had to figure out on our own; said route put us on the wrong side of the stadium and thus in a parking lot we're not used to parking in; we bought into a tailgate rather than bringing our own stuff like we always do thus leaving us with nothing but beer upon arrival; when we finally got in touch with the folks from the tailgate we bought into we learned they were in the absolute furthest lot from where we were, and actually quite close to the lot we usually park in; tons of people sold their tickets to Patriots fans all of whom walked into our house like it was theirs (same goes for the players); two of those Patriots fans were seated to our immediate right; and finally, if Randy Moss beats you deep and drops the ball there is no excuse for letting him do it again on the very next play since it's unlikely he is going to drop two in a day, much less in a row.

And I woke up Sunday to find myself sick once again.

And of course, Molly was getting worse. So Erin took Molly to the doctor today where they gave her a prescription for an antibiotic and some meds to put in the nebulizer. She is really junky and according to the doctor her lungs sound a bit crackly. Since she can't cough up the phlegm like we can, a lot of it ends up backing up. Needless to say this makes her quite uncomfortable and keeps her from progressing toward good health.

I am leaving for Toronto on Thursday and Erin is supposed to meet me there Friday night. Rutgers plays Ball State in the International Bowl on Saturday. Right now it's not looking like Erin is going to be able to make the trip.

Merry Christmas (Dec 26, 2007)

2008-01-08T08:04:00.000-05:00

Mom and Greg left today after a nice five day visit. We spent a lot of time doing nothing in particular, but it was nice to have them here and I am certain they enjoyed seeing Gavin play soccer over the weekend and open his presents yesterday morning. Santa was good to everyone as he suggested he would be when we saw him a few days ago.

Yes, that's correct, Santa came to our house Sunday. He arrived on a big fire truck and brought with him an early present for Gavin: a big fire truck. He also brought Molly a soft Winnie the Pooh stuffed animal, which goes nicely with the decor of her room. It was nice of him to make the early trip to see us and to spend some time with us around the tree. We sent Santa and his helpers (Mrs. Claus and some firefighter friends of mine) back to the North Pole (the firehouse) with some pumpkin bread and a bunch of cookies. Those are some good people: Santa and his helpers.

Christmas Eve we went to the evening children's mass and then to dinner and a nice, little Italian place near our house with Erin's parents and Monica. Molly and Gavin were very well behaved in both places, which is more than I can say for myself. I spent the entire mass counting the minutes until it was over (just too crowded and pretty long). I am not sure how they can call it a children's mass and make it last 90 minutes? Oh well.

Goodbye 2007....

2008-01-08T07:51:00.000-05:00

...hello annoying and tedious illnesses.

Again I find myself appalled by the amount of time that has passed since my last post. And again I realize that so much has happened since that post I can either plow forward and drag this on and on until everyone is all caught up, or I can post a series of short blurbs outlining specific events. I am not sure which one I am going to do but I can assure you that by the time you read this the answer will be clear.

Actually you know what? I am going to do it a little different still. I am going to catapult myself back in time as if I am writing these in a more timely fashion. Rather than backdating the posts and confusing all of you I will simply put the date that the post should have been written in the title of each post. That should make me feel like I actually accomplished something in the last three weeks.

And yes, we're sick. Me and the Bear enough so to be miserable. Erin and Gavin enough to notice. And like that bad tattoo you got when you were 17, it just won't go away. Although, actually, as of last night Molly seemed to be doing much better. She was laughing and playing before bed and slept a good portion of the night without oxygen (although I may be delirious).

Back to Normal

2007-12-17T08:33:00.000-05:00

Well things are back to normal in the Brown house. And, as tends to happen when things are normal, another weekend has flown by without a whole lot of rest. But hey when the choices are laying around all day watching movies in a hospital room or staying busy doing holiday things, I'll take busy every time. If you're curious, neither make it particularly easy to get up on Monday morning...especially when it's freezing cold.

As you can guess from the photo, we've acquired and adorned the Brown Family Christmas Tree 2007. We found a new farm, closer to home, with a better selection. Saturday morning we all went down there and within minutes everyone had agreed on winner. As is typical, Gavin wanted to bring home some others that were either too wide or too small [he tends to lean toward the "Charlie Brown Christmas Tree" more so than the "Sean Brown Christmas Tree"]. It then took the remainder of the day Saturday to get the tree and the rest of the inside of the house decorated. We have decided that, as well as having an overcrowded garage, we have too much Christmas stuff.

That reminds me: I told Gavin he had to go through his toys so that we could pick out a bunch to give to the kids who weren't as fortunate as he is and don't have as many toys. He wasn't happy, but he'll go along with it. Anyway at one point during decorating he came out to the garage with me where I told him I was going to have to go through my mess out there and he says, "you mean you have to give it to people who don't have as much junk as you?" Sometimes I swear he is 14.

Then yesterday we did some grocery shopping and some baking (Pumpkin Bread: I'd share the recipe but it's not mine and there may be some copyright infringements). We also went to a birthday/holiday party with some friends, which was nice. The roads were pretty bad north of where we live, but as a result most people stayed off the road. Amazing thing is that the only people who went out, however, were the idiots. This, I've noticed, is no different than any normal day, except when the roads are bad there just aren't as many idiots.

Then I wound up the weekend watching the Giants stink up all of East Rutherford and its surrounding areas. If anyone hasn't been paying attention they're 9-5, third in the NFC, and could have clinched a playoff spot with a win last night. But they stink.

And I know, all you care about is how Molly is doing. Well she is great. She's got a bit of a cold and she has been sneezing and coughing a little more than normal, but her insides seem to be working the way they're supposed to (we go back for a follow-up with the GI this week) and she has been smiling and happy. More like Molly than she was the last few weeks.

Home Again

2007-12-13T08:39:00.001-05:00

We left the hospital last night around 7 pm. Molly recovered fine from her procedure and tolerated her feeds all day.

We'll have the biopsy results some time next week, and have to schedule a follow up visit with the GI. Hopefully we can get this all figured out very soon.

For the time being, Molly is quite content. She is back to her happy, smiley self. And as of this morning when I left the house she was sound asleep in her crib. Gavin and Mom were also sound asleep in their beds. And Dublin was sound asleep on his. What I wouldn't have given to be doing the same.

Back at RWJ

2007-12-12T07:58:00.000-05:00

On the one hand, it's easier to do this when I am posting regularly, so I just have to throw in an update. On the other, in that case I would have to find time to post regularly. Since I haven't had time to post with any consistency, I'll have to figure out a good place to start.

I mentioned Molly's Thanksgiving virus in my last post. She was miserable that day, and a few days before and after. On Thanksgiving evening, while I was holding her, I noticed a big lump in her belly. It was pretty large, and hard as a rock, and nurse Cara confirmed it could in no way be something that actually belonged there. We mentioned it to the pediatrician, but considering Molly's other symptoms, he didn't think it could be a bowel obstruction. He said if it was she wouldn't be able to go to the bathroom at all, and she would be throwing up a lot. Neither was the case, and in the days following she went back to her normal, happy self.

Then last week we realized that she a) still had the lump, b) was throwing up a little, and c) still hadn't really gone to the bathroom in a while. This coincided with Molly's fifteen month check-up. When she went in for that check-up her doctor agreed there was definitely something amiss and suggested we call Molly's GI. All day Thursday both Erin and Dr. Paul called the GI, without a response. A fellow at CHoP suggested it was simply constipation. After 24 hours of this, Erin decided to take Molly to the ER.

Oh but wait, let me back up. I totally forgot that while most of this was happening I was in Chicago.

So Tuesday night I went to the airport to fly to Chicago. Minutes before boarding, both my flight and the flight following were cancelled due to weather in Chicago. I booked a seat on the first flight Wednesday morning and went home. I was going out for a two day conference and if my morning flight was on time I would only miss about 90 minutes of the first day. Nothing is ever on time flying to O'Hare, so I figured maybe I'd miss three hours tops.

Wednesday morning we board and pull back from the gate on time. As soon as we've backed away the captain shuts down the engines and comes on to tell us that due to weather in Chicago we're going to have to hold for an hour.

40 minutes later we're taking off.

All goes well and we're still scheduled to arrive just a few minutes late. As we begin our descent into O'Hare, something happens I have never experienced before: the pilot aborts the landing and pulls back up into a holding pattern. He told us the runway was icing up and we needed to hold while they set up landing on an alternate runway. Hold time estimated to be 30-40 minutes.

After half an hour I notice we are no longer circling, but now climbing and heading straight in some direction I can't figure out. Captain comes on to tell us we had been put in another holding pattern, 30-40 more minutes, and we haven't got enough fuel for that so we're being diverted to Indianapolis.

We land in Indy, they refuel us right there on the tarmac, and then we're told there is a two hour wait before we can take off again.

15 minutes later we're taking off.

We arrive in Chicago about four hours late where it is now sunny. After a quick cab ride (during which it again began to dump snow) I arrive at the conference roughly five hours after it started.

Day two of the conference I am planning on making the most of it. My flight is scheduled to leave that evening around 9 pm. The facilitator is aware that people are trying to catch flights that night and intends to condense the second half of day two to ensure everyone gets where they're going on time. Unfortunately there is rumor of another dumping of snow that night and people are starting to work on even earlier flights. I am confident I'll be spending one more night in Chicago because of the snow. That's just how it goes with me and that city (some of you may recall in July I flew out to play golf and was supposed to go out and back the same day; I spent three days trying to get home because of thunderstorms and overbooked flights).

Then about three hours into the morning session of day two I get the call from Erin that she has just come from the pediatrician and she and Dr. Paul are unsuccessfully trying to reach the GI. She mentions taking Molly to the ER and/or her being admitted. I decide to get on an early flight home so I beat the snow for sure. I walk out of day two of the conference after a two-day total of six hours of a scheduled eighteen.

Now back to Friday morning and Molly in the ER at RWJ.

X-ray confirmed there was a giant mass in her stomach and the doctor was pretty sure she wasn't passing it on her own. They began some aggressive treatment to try to break up the mass, which continued all day. She finally was admitted and brought up to a room at around 9 pm. Their aggressive treatment continued through the night on Friday, all day Saturday, and all night Saturday night. By Sunday she had passed most of it, and was clearly feeling better.

With that being said, we were pretty sure she would be heading home yesterday. However, the doctor is still concerned there may be a more serious issue than just a build-up. They're concerned there may be some malfunction in her system that could cause this to be a recurring issue. So after talking with us, and then consulting with Molly's doctor's at CHoP, it was decided Molly would have a minor surgical procedure this morning to test for Hirschsprung disease.

If all goes well with Molly's recovery after the procedure she should be able to go home tonight. We're really hoping that is the case.

The only really good thing about this hospital stay is that RWJ is literally two blocks from my office. So I am heading over there now. I'll post another update later.

Thanksgiving Prep

2007-11-21T08:58:00.000-05:00

That's sort of a misleading title. It may make one think I actually have to prepare in some way for this holiday. Like I am cleaning the house before all the guests arrive; or cooking the turkey. I am really not doing anything to prepare. Maybe I should have made the title simply: The Day Before Thanksgiving?

Things are busy as ever in the Brown house. Gavin is going to school; Erin is working from home and tutoring a couple nights a week; Molly is hanging out with Mom and visiting her regularly scheduled specialists; and I am just trying to keep up with all of them.

A couple weeks ago Molly had a nasty stomach virus, and the last couple nights she has been waking up with some new, unrelated stomach issues. But aside from that all is well. She was slightly miserable for the week or so she had the aforementioned virus [not that I blame her]. It's always so obvious to us when she is not feeling well because typically she really might be the happiest baby ever.

Most kids cry for a reason: hungry, diaper, tired, uncomfortable. Molly is no different, except she hardly cries for anything. She lets us know when any of the above scenarios needs to be addressed, but to actually cry - I mean to let out a whimper or a scream - something has to be really wrong. This explains why even I - the soundest of sleepers [I am not really sleeping through I am choosing to ignore most issues] - bolt out of bed when Molly awakes with a scream in the middle of the night.

So as I mentioned at the beginning of the post, we're gearing up for turkey day. The Wilberts clan came up from Houston and Cara is coming out from the city (even though she has to be back for work at 7pm). I am psyched for some relaxation time with the whole crew. Maybe this year I'll even try not to eat myself ill.

Then again maybe I will.

Hope you all have a nice Thanksgiving and take a few minutes to consider the things you have to be thankful for. I know I will. Not that I even need a holiday for that these days.

It's the Holiday Season; Unpaid Advertisement Follows

2007-11-19T07:31:00.000-05:00

A couple quick administrative things:

1. If you haven't registered at www.trisomy18.org, or you registered but chose not to accept email from the organization, then you're not aware of the new collectible holiday ornaments. This ornament is the first in an annual series and it comes enclosed with a special awareness card. I think you'll agree these ornaments are attractive and reasonably priced, and would make a nice holiday gift.

1a. Also, if you haven't chosen to accept emails from the Foundation, you'll miss out on the highly anticipated debut of "From the Desk of the VP of Development" (a working title). Hopefully this catches on and serves as an effective means of communicating progress and goals with the members of the community, while simultaneously helping to coach and empower them to broaden the reach of the Foundation through fundraising and awareness efforts with their own networks - much in the way all of you helped us through the Triathletes for Trisomy 18 efforts last summer.

So, anyway, if you don't get emails from the Foundation make sure you have an active email address listed in your profile. If you're not sure one way or the other, shoot me an email letting me know you want to receive correspondence from the Foundation (using the email address you want the correspondence sent to) and I will make sure your status is updated appropriately.

[Also feel free to email ideas on what I should write about. For some reason I don't think I'll get away with mass communicating Giants updates to the community. FYI: if you didn't receive an email "From the Desk of the Executive Director" on Nov 20, you're not set up to receive email from the Foundation.]

2. The Foundation also has Keepsake bracelets like the one in the picture above. You can get one with or without a birthstone, and they also are reasonably priced, make nice gifts, and come with a special awareness card.

Both the ornaments and the bracelets require some lead time, so the holiday deadline is fast approaching.

Most importantly, proceeds from these items immediately benefit the Trisomy 18 Foundation and its mission of support, advocacy, and research. Items can be purchased by clicking here.

What a Difference a Year Makes

2007-10-31T12:28:00.000-04:00

Ain't that the truth.

One year ago, at this exact point in time, Erin and I (and many of you) were waiting for Molly to come out of heart surgery. Perhaps you recall that a few days prior to the surgery we were weighing the pros and cons - first of whether or not to have surgery, and then of which of two procedures to choose from? Perhaps you even recall the day of the catheterization, when Molly's surgeon said he wanted us to make a decision that, "one year from now we'll all look back on and be happy with." Well, I haven't talked to him in several months, but I can tell you the Browns are pretty darn happy with the decision we made and I'd have to assume he'd agree.

As I say over and over, I don't post much when Molly is healthy. One could deduce from my blatant lack of attention to this space that Molly has been very healthy. This is, for the most part, quite accurate.

Molly has been feeling well for a while now. If you read the CaringBridge site, Erin gives you a bit more detail on the day-to-day activities.

I have to say though, it’s not all little rays of sunshine. Again, thinking back to the surgery a year ago, we knew the band on her heart would only temporarily fix the way her heart functions. The next step is to close the hole, which is quite large. Apparently the material they use as a patch is not typically used for a hole as large as that in Molly’s heart. And, there was also the secondary concern of a potentially smaller, muscular VSD being present. We’ll have to face all of these issues in the very near future.

Earlier this week Molly went to see the cardiologist and she gave her the go-ahead to have the tubes put in her ears. However, she also reminded us of all the information I outlined above. When Molly goes back in March for her evaluation, we’re going to need to start thinking about follow-up surgeries for her heart. For now, though, she continues to do quite well; she feels good; she looks good; she’s happy.

And yes, obviously, so are we.

And That is a Rutgers....First Down

2007-09-25T08:11:00.000-04:00

Gavin loves football. This is a good thing because, as some of you may know, I do too. On the surface my new job appears to have nothing to do with football. But when you work for a public university amidst a surge in popularity resulting somewhat from the success of its football program, it takes on a more significant role in everyone's day-to-day activities. Particularly if your job function involves interacting with alumni as often as possible, and tens of thousands of them come to you for a home game.

I get to go to all the games. We have season tickets so I get to go anyway. But now it's actually part of my job. I took Gavin to the first game of the season and he had a blast. Ironically, his favorite part is the cannon. It gets fired after every RU score. For some reason he doesn't like it when the crowd cheers really loud, but he loves the cannon. His other favorite part is when there is an RU first down and the PA announcer shouts the title of this post. He gets pretty into it and says it along with the announcer. We also record the games on the TV at home. For the entire week all Gavin wants to watch on TV is the Rutgers game. He pretends to be Ray Rice and runs plays along with the team right in our living room. He also spends at least 30 minutes every evening playing football in the yard with whomever agrees to "be the yellow team". I can only hope this all works out well for us in the long run.

Separate from football the job also goes well. I am still getting my bearings and learning the ropes, but all in all I have avoided doing anything silly. The group I work with is only five people, so I am pretty comfortable with who they are and what they do And there are another handful of people whose names and functions I have figured out, but there is a long way to go. We have over 150 people in the three buildings on this campus and on two other campuses across the state. In some ways it's been easier for me to meet alumni than it has to meet my colleagues. But none of that was meant to sound negative so if it does chalk it up to bad writing.

I do miss some things about my old gig, but all in all I am thrilled with the decision to move. And I am looking forward to going back to some L'ville events as an alum, rather than an employee.

OBX

2007-09-20T09:02:00.001-04:00

Our vacation to the Outer Banks was awesome.

Seriously, I am not sure there is any other way to describe it. Basically, it was precisely what the doctor ordered. The one down side, if there has to be one, is that The Boy almost needed that doctor. Gavin contracted some variety of stomach bug that effected him most severely at night, although it made him fairly irritable during the day as well. But it didn't have too negative an impact on things. Like I said, it was awesome.

My goal was to read, relax, and spend a lot of time in the sun. I was very fortunate to get to do all of those things.

Since I was technically between jobs I was actually able to leave my Blackberry in the bed side table for most of the week. Those of you who know me probably realize how difficult that was. That piece of equipment is practically attached to my hand under normal circumstances [since then the Blackberry has actually been retired as my new employers have forced me to adapt to a Treo; I miss my Blackberry].

I was also able to fly through the first three plus installments in the Harry Potter series. The first three went really fast: no more than a day and a half each. Then the fourth one (this is the one where they jump from 3-400 pages to 7-800 pages) became something of a road block [I have since finished the fourth and am now fighting through the fifth...there are seven. Don't even think about telling me how it ends].

The weather was incredible; the beach was 300 yards away; and the house had a pool. Every day was pretty similar in schedule: early morning run, beach, lunch, pool, beach, pool/happy hour, dinner, hot tub, sleep. If you think that sounds monotonous you're sorely mistaken. That schedule was precisely how I wanted the vacation to go down.

I came back relaxed, tan, and obsessed with a skinny, little wizard. I'm really hoping to pull off a similar vacation next summer.

Television Debut

2007-09-20T09:01:00.000-04:00

Many of you probably remember the triathlon fundraiser for the T18 Foundation, and the article that appeared in our local paper the day before the race? Well one of the local news stations must have picked up the article and decided we might make an interesting story for their show.

On August 15 Erin, Molly, me, and Victoria Miller from the T18 Foundation, filmed an 11 minute segment for Perspectives: New Jersey, which aired on August 18 at 5:30 am. I understand it has replayed a few times since then, which is great because I'd bet Erin and I were two of only about a dozen people who caught the opening show [we actually prolonged the start of our vacation one hour to see it].

The host did a great job of asking the right questions. We talked mostly about Molly and the challenges she faces, as well as about the challenges facing all T18 diagnoses. The fundraiser was only the very last thing we discussed, which was nice because all the previous topics should be more useful to the general public. We're hoping we can get a video of the show to put on the T18 web site, and of course, on here as well.

I should not go without saying how impressed I was by my wife. She gets extremely anxious when she has to speak in public or do anything where she is the focus of attention. Well she totally nailed it. She was unbelieveable. On top of looking incredible on screen she managed to speak eloquently about the condition and our experiences. She was simultaneously honest and knowledgeable. And she totally stole the show.

Of course Molly did quite well herself.

You Mean He's Still Around?

2007-09-20T08:55:00.000-04:00

Yes folks, I am still around. And I have to apologize for being such a slacker. I've actually had the nerve to fill my free time with things like -- well, actually, I don't really know.

So I promise to make this the first in a series of posts over the next several days relating to me, the new job, our family, television, vacation, politics, religion [hopefully some of you were paying attention? it can't possibly have been so long you'd forget the rules: no religion, no politics]. But I'll post on those other things soon.

First things first, Molly is doing great. She had a bit of a bug a couple weeks ago that lingered longer than we'd have liked, but she kicked it on her own (well with Erin taking super-good care of her, actually) and has now fully recovered. She's been quite happy since then. In fact, she might be the happiest baby on the planet. More on that later.

I know you guys have been checking in and I am sorry for the lapse. Thanks for staying on me to update. It's good motivation.

Big Weekend

2007-08-15T07:56:00.000-04:00

Last weekend was a big one.

On Friday Molly turned one year old. I've heard from a lot of people that this year has just flown by. I get it, obviously, but at the same time I assure you it has not. I agree, of course, that it seems like August 10, 2006 just happened, but when taking into consideration all the things that have gone on in those last twelve months there has been nothing quick about it. This year has been terrific; and stressful; and promising; and exhausting. But it's been 365 days. And Molly continues to defy odds.

My mom and Greg came up to celebrate for the weekend. They arrived Friday morning for Molly's actual birthday. We had pizza night at our house with Erin's parents and all the excitement was just too much for the Bear because, as you'll see from the photo, she was asleep by the time the cake was cut.

Saturday was the joint birthday party. We had a beautiful day and a great showing of the extended family. Gavin's only complaint was that there were, "not too many kids as grownups," which seems to me to mean that next year we'll have to have a kid party [it was bound to happen eventually]. There were 6 kids there, but I guess he wants the kids to outnumber the grownups? My biggest complaint was that I didn't consider the size of the Blizzard cake and that there isn't a freezer I know of that could have accommodated its width. So we packed it in ice and cut it just before it turned into Blizzard soup. You know when you are a triathlete in training Blizzards are a staple of your diet.

Sunday we spent the afternoon celebrating Rob's birthday [which was the day before during our party that my wife intentionally scheduled on his birthday to get back at him for having our fantasy football draft on Gavin's birthday] at the Garland's. Another great time and another day of wonderful weather. I'd say with the exception of going two and out in horseshoes that day was just about perfect too.

So it was a great weekend all around.

Today we're scheduled for our first Brown family television appearance. I'll keep everyone posted on where and when you can view it. All I know is we have to go to the studio this afternoon, they're going to put makeup on me, and we'll have to answer some questions on camera. Aside from that, you'll all have to wait in suspense.

Team Molly Bear - NJ Tri

2007-08-09T08:38:00.001-04:00

We're now about two and a half weeks beyond the big NJ State Triathlon. I should have posted sooner, I know, but for some odd reason things seem to be quite busy these days. I am not complaining...just making excuses.

So race day could not have been any better. The weather was terrific; the turnout was incredible; the race was well organized; and the Team members all did well (reports from Massachusetts indicate the weather and race were equally impressive up that way).

As many of you probably know by now, the Team raised over $21,000 for the Trisomy 18 Foundation. We can't thank you all enough for your support and generosity.

Pictures are up on the Shutterfly site so you can see what the set up looked like. We did our best to get some group photos but it was pretty chaotic; there were people everywhere!

We will be doing this again next year, so anyone who gave a second thought to joining the team has plenty of time to train. Sprint distance race is a 500 yard swim, 12 mile bike, and 3.1 mile run; and the course is great for a first timer.

Thank you again to everyone who contributed to the Team and/or the event in all the different ways you did.

Leaving Lawrenceville

2007-07-24T16:27:00.000-04:00

So the mysterious phone call I keep referring to was a job offer. After careful consideration and an ongoing battle of pros and cons, I decided to accept it.

Just after Labor Day I'll be heading north a little bit to work as a Principal Gifts Officer at the Rutgers University Foundation. This is a great opportunity for me professionally, and it will be a great new challenge.

While I will miss Lawrenceville immensely, I am looking forward to the next chapter.

All the love and support we've received from our friends at Lville since Molly's diagnosis has been incredible. I hope everyone there knows how much it's meant to us, and how much we'll miss seeing them on a daily basis.

But I am an alumnus; it's not like I am going away.

I Prefer My Own Bed

2007-07-23T15:32:00.000-04:00

So it's been a while since anything was posted and for a change it is not a reflection of what's been going on. Well it is, but not the way it normally is. Usually I say I haven't written anything because nothing has been happening. In this case it's because so much has been happening. Molly is still healthy, and thankfully none of what's been keeping us busy has been bad.

First we got to spend Fourth of July with the Browns from Hilton Head and some of Margot's family. They were up here in between a wedding in MD and another in upstate NY. It was nice to see them even though it was quite brief.

Then the following weekend we went to a wedding in which Erin was the matron of honor and Gavin was the ring bearer. We had a great time; really nice wedding and a lot of fun. Erin and I got a little mini-vacation out of it in that we brought Aunt Monica with us to watch the kids during all the wedding-related festivities. So we got to stay out late on Friday night and then enjoy the reception on Saturday night - solo.

Sunday we got home in the early afternoon and just hung out for a while. I had to get to bed early because I was catching a flight to Chicago really early Monday morning.

Boy do I wish I had slept through that alarm!

My plan was to fly to Chicago for the day to play in a golf outing. It would be my third year doing so. Great event; a lot of fun. Typically I fly out Monday morning and home Tuesday morning. But I saw no reason to spend the night if I could catch a late flight home Monday night.

The day started out beautiful. A little hot, but sunny and clear. After about five holes it got pretty dark. After seven holes it was downright scary and as the thuderstorms began they sounded the horn to clear the course. Within an hour it was decided the event would be cancelled. Within two hours I was on ym way to the airport to see if I could catch an earlier flight home.

Not only could I not catch an earlier flight, mine was cancelled.

So I called and got a hotel room and booked a flight for the following day at noon. The only real issue was since I was only going for the day I only had the clothes on my back. I had one change of clothes so I could wear something other than what I played golf in for the floght home, but that was it. The hotel gave me some toiletries. Annoying but not terrible.

Then on Tuesday the flight I was rescheduled for was delayed two hours. When we finally boarded and were about the push back from the gate, the captain came on to tell us about a ground stop in Newark and warn us we'd likely push back from the gate and sit on the tarmac for two hours before returning to the gate. I watch the news. I saw JetBlue leave people on the tarmac for 21 hours. He gave me the option to get off the plane and I took it. I figured I could get home faster on another airline.

I was wrong.

So another hotel room was reserved and another flight was booked. I still had no other clothes, and now my golf clubs and the few things I brought were headed back to NJ as well. I bought a Cubs tee shirt in the airport and waited for another airport shuttle.

Wednesday morning I headed back to O'Hare to see if I could get on an earlier flight. Since I couldn't I had to hang out at the airport until my flight departed just after noon. The highlight of the morning was a phone call I received, the topic of which will come up later. Flight took off pretty much on time. We landed in Newark around 2pm.

After quickly locating my golf bag I headed out for the short drive home. It felt great to finally be home. Of course, with Erin and Gavin flying to Houston that evening I wasn't going to be there long. Within the hour I was back out on the Turnpike heading to Newark.

We arrived in a torrential downpour and I got soaked running from the car to the terminal. After waiting in a few lines we finally got Erin and Gavin through security and not one minute later the monitor displayed their flight as "delayed". Since they were already through security Molly and I headed home. Then I got to sit in rush hour traffic on the Turnpike for a while, soaking wet, in the clothes I'd been wearing since Monday.

Of course since Erin and Gavin's flight didn't take off until after 10 pm, I shouldn't complain too much.

Then Friday morning I dropped Molly off with my mother-in-law and headed back to Newark yet again to catch a flight to Houston. We spent a nice weekend down there with our new nephew Ethan. He's a cute little fella, and he likes boats and doesn't seem to mind Tex-Mex. I think the highlight for Gavin was the NASA museum? You'd have to ask him though.

We returned home late Sunday night/early Monday morning in time to catch a few hours of sleep in my own bed before heading to work Monday morning. Of course, since I was basically MIA all the previous week I had plenty to do once I arrived.

Including ponder the content of the aforementioned phone call I received in O'Hare airport. More to come on that in the next post.

Semantics

2007-07-02T19:41:00.000-04:00

Tomorrow. A week from tomorrow. Who is really keeping track? Besides, you guys are the ones who told me to post when the mood strikes.

So last week we took Molly to an ENT. The doctor was perfectly nice, but she didn't tell us much of anything. She said the tests Molly had for her hearing may not have been accurate (which we already knew) because the sensors may not have been able to measure things like fluid in the ear, or a narrow ear canal prohibiting the probes from getting down as far as they needed to. She said there are a whole series of tests we should do to gradually determine the extent, if any, of her hearing loss.

See there was no reason to rush for that post.

Since then things have been pretty normal.

This past weekend was nice: we went to the pool on Saturday and the beach on Sunday. The weather was awesome and we all had a good time. Molly and Gavin both seem to like the pool, but neither cares for the freezing, cold Atlantic.

Gavin and I went for a run on the boardwalk. He wanted to run with me, but I brought the jogger stroller just in case. He probably ran about 3/4 mile before asking to get in the stroller and rest. Then after a mile or so he decided to run again. That time he only last about 1/4 mile, but his form was much better. After that I pushed him in the stroller the rest of the way.

Speaking of the stroller, I am going to start running with Molly (or Gavin) as often as possible. I'd love to get to the point where I can do some races with Molly. Some of you may recall my desire to compete in triathlon intensified when we received Molly's diagnosis last March. Then this summer we decided to recruit athletes and supporters for Team Molly Bear to help raise money for the Trisomy 18 Foundation. So one could suggest that Molly has been the motivation behind my entry into the world of "recreational" triathlon.

Well if you're not familiar with Team Hoyt, take a look. I saw Dick and Rick Hoyt on Real Sports with Bryant Gumbel a couple weekends ago and was blubbering like an idiot by the end of the segment. Incredible. Not to sell our team short, but I have a long way to go before I can even ask for a spot on the Team Hoyt practice squad. Yet another "something to aspire to".

Finally, we're approaching the 2nd Annual Emma Marie McCabe Golf Classic. So far there are four foursomes playing in our group. If you're interested in coming out please let me know so I can send you the details. It'll be a great time.

A Better Showing

2007-06-24T23:00:00.000-04:00

This past Saturday was race #2 of the season for your fearless triathlosopher. Sadly I have no existential analyses of previous cryptically referenced topics to share. This is good news, however, as it means I was concentrating on pedalling to the finish as quickly as possible rather than formulating prose. That's right this time I actually played the game. And the results were gratifying.

It also means that the philosophical nonsense I keep promising will have to wait another post or two. Basically, the internal battle is so bloody my faithful readers need to be protected from it. For those of you who can't wait, a less cryptic mention: I'm finding it difficult to understand how someone can be as superstitious as I AND believe in fate and karma at the same time; and I am finding it even more difficult to explain why it is that confuses me so much. If someone wants to write that post for me, you know where I am.

So since your humble scribe failed to deliver the goods once again I'll do my best to provide an adequate substitute. Since a lot of you have probably never been to a race, and some of you may be planning to participate in or be a spectator for one this summer (in support of Team Molly Bear), I offer you a day in the life of a recreational "triathlete" - June 23 to be exact (technically starting June 22):

Friday, June 22, 2007, 5:30 - check all bolts and moving parts on bike; take front wheel off and place in the back of the car; collect and lay out all necessities for race day (some people use a checklist; I am not one of those people).

6:15 pm - consume a healthy dinner consisting of grilled chicken and whole wheat penne pasta with tomato sauce.

7 pm - go over all necessities again before packing my bag. The list of things going in the bag looks something like this: wetsuit(s), goggles, race shirt, bike shoes, sunglasses, helmet, running shoes, visor, large black towel, small black towel, sunscreen, race belt (to hold race bib with number).

There are also nutritional essentials for the race: two bottles for bike (one with sports drink, one with water) and one orange flavored gel (basically food in a pouch).

And nutritional essentials for pre and post-race: two bottles of water, one Gatorade, PBJ, banana, cereal bar(s).

And some details the superstitious freak in me tends to: I lay out my clothes for the next morning (khaki cargo shorts [which are worn over], race shorts, flip flops, long-sleeve black shirt, Miller Lite hat). I also take off my chain and wedding ring; put the ring on the chain; and put the whole thing in a small pouch containing a rosary. That pouch then goes in the pocket of the khaki shorts along with my iPod.

8 pm - leave packed bag by front door; put all drinks and PBJ in fridge; put cereal bars and banana in cooler bag; gel in bag with race gear. Go downstairs to lie down in front of the television.

8:10 pm - fall asleep on the floor with Molly.

9:30 pm - Go upstairs to shower and get in bed.

Before this race I slept like a rock. For the previous race I slept probably three hours before waking up for an hour and then falling asleep for two more hours. Before my first race last summer I slept for three total hours (you may remember me telling you this, or perhaps you read it as a quote from my wife in the Trenton Times?).

5 am - wake up; brush teeth; get dressed; go down for breakfast (oatmeal); gather everything.

5:15 am - pulling out of the driveway doing one last mental check; driving to Pittsgrove, NJ.

6:30 am - arrive at Parvin State Park and find a parking spot; leave everything in the car and head to registration. They make me sign a waiver that I believe says something about being physically able to perform the tasks ahead and agreeing not to file suit if it turns out I overestimated my fitness level. A young lady asks me how old I am, hands me a blue swim cap, and tells me I am in the first wave. I throw up a little in my mouth.

6:45 am - return to car with goody bag of stuff I'll never use and a T-shirt I'll never wear; eat cereal bar; unload car (it's freezing outside, I am literally shivering. I decide to leave the sleeveless, short wetsuit in the car and go with the full suit).

6:50 am - set up transition area: basically this is a parking spot for your stuff. It's where you go between the swim and bike, and then again between the bike and run; you hang your bike up on the rack and then lay your stuff out next to it in some organized fashion. As you may imagine, I prefer mine very neatly organized with everything laid out in the order which it will be used: large black towel flat on the ground; bike shoes at the foot of the towel with helmet on top of them and sunglasses/gel in the helmet; shirt on top of helmet; just above that pile are my running shoes with visor on top of them; in front of that, at the top of the towel, my bag (filled with all the things I will have removed from my person) and my small black towel draped over it; I hang my belt with race bib from the seat of my bike.

7:01 am - call my wife and tell her I am there, all set up, and in the first wave. I inform her it is freezing and I am slightly terrified. Disconnect promising to call as soon as I am done.

7:04 am - go to the end of the line for the men's room.

7:10 am - get to the front of the line where I realize I have waited for six minutes to access one of three urinals that have gone seemingly unused for the entire time I stood in line.

7:15 am - race director makes his first announcement - and I am paraphrasing: a bridge on one of the roads on the bike course was washed out in a storm earlier this year. Bike course is now 15 miles instead of 12. Sorry.

7:17 am - go down to the water to check the temperature (warmer than the air) and see how the buoys are laid out for the swim route.

7:25 am - change iPod from Carrie Underwood to The Game (I know, my iPod is the only place those two will ever perform back-to-back) and begin stretching. I am fairly certain I am going to throw up.

7:40 am - return to transition area; turn iPod off; put everything into my bag; put cell phone into seat pouch on my bike (I like to put it in there in case I get bored on the bike ride...or in case I need to call for help for any reason); start getting into my wetsuit.

7:45 am - wetsuit is on just in time for pre-race meeting; one final check of transition area set-up; slap on my swim cap and grab goggles.

7:50 am - walk down to the water realizing I heard not one single word of the pre-race meeting; I'm positive I am going to throw up; and I could really use that urinal again (but it took me five minutes to get the wetsuit on and I am not about to mess with that).

7:57 am - in the water waiting for the countdown; I get myself just inside the far left start buoy so I start from the farthest point away from the buoy to which we're swimming, but I have a good angle to that buoy and a high likelihood of swimming out on my own since people tend to take the shortest distance.

8 am - gun goes off for wave one of four; 150 arms start swatting around in the water; I get out with relative ease and limited contact with other swimmers.

8:04 am - I am to the farthest buoy, making a turn around it; I look back and see a ton of people behind me. There is plenty of energy left in the tank; considerably less water has been ingested than previous open-water swims.

8:08 am - Out of the water; light-headed; short of breath. I am running up the beach and people are cheering; it's kind of like being in one of those flashback scenes from CSI (the real one, none of the Miami or NY garbage) when all the background images are blurry and the voices and sounds appear to be coming out of an old tape player that's really low on batteries).

8:08 and change - I am pulling my wetsuit off and drying my feet on the towel; I pull on my race belt; throw on my shirt; stick the gel in my shorts; put on my helmet and buckle the strap; put on sunglasses; step into shoes; grab my bike and jog out of transition (I make it sound fast, but from the time I stepped out of the water to the time I jogged out with my bike nearly three minutes elapsed).

8:11 am - jump on the bike; clip into pedals; start pedaling.

This is the worst part of the race, in my opinion: It's the longest segment and it's pretty lonely. It also happens to be pretty uncomfortable.

I try to get into a groove at 20 mph or so, and get comfy in the aero position. The course is flat and has long straightaways, so this is not so hard to do.

8:30 am - suck down the orange gel and wash it down with water.

8:50 am - after sipping from the bottle of sports drink I attempt to return it to the bottle cage attached to the vertical bar on the lower part of my bike frame; I miss the cage and the bottle falls. This happens to people all the time. You just leave it. They're like $4. However, this time the bottle didn't fall all the way to the ground. It actually got stuck between my left foot/pedal and the bike frame ao that I was unable to pedal. This at roughly 20 mph (though decreasing rapidly). My options are to slow down and eventually stop so I can extract the bottle, or, what I decided to do, continue at current rate of deceleration and carefully reach down for the bottle. After some forceful pulling the bottle came free and I was able to pedal again. A young lady flies by me and says, "great save, that could have been ugly." I thank her, try to increase my speed, and watch her butt get smaller and smaller in front of me. I finally caught her at the bike dismount eight minutes later.

8:59 am - rack my bike; take off helmet and replace with visor; take off bike shoes and replace with sneakers; run out of transition. Takes just over one minute. As I run out I look down at my watch to see that I am at exactly one hour and know that with a sub 25 minute run (which is always my goal) I can beat my target time of 1:25 (which was set thinking the bike course was only 12 miles). Incidentally I have run a sub 25 minute 5k in exactly zero competitive events. In fact, just six days prior I ran a 26:45.

9:08 am - I throw an empty water cup on a pile of empty water cups and realize I've just passed the one mile mark in under eight minutes. My calves are really sore. I have never experienced the feeling of cramping calves before.

9:13 am - we reach the turnaround; the volunteers standing there tell us we're all doing great and we're half way there. I note my pace has slowed.

9:18 am - I grab a cup of water and don't even try to drink it, I just throw it toward my mouth realizing I need to giddy up for 1:25.

9:21 am - realizing there is not a lot of time left I pick up the pace. It seems like a good idea at the time. I have no idea where the finish line is, but I know it has to be close because my target time is approaching.

9:24 am - cross the finish line; hit the button to stop my watch; look up at the clock. The clock and my watch are off about three seconds, so go with their official time at 1:24.25.

I give my timing chip back and run straight to the bathroom. Not surprisingly, I no longer feel the need to throw up.

9:26 am - call to tell my wife I finished; Gavin answers the phone and yells, "did you win, Daddy?" Smiling I make my way to the post-race food where, since I know I have a PBJ and a banana in my car, the only thing that appeals to me is a chocolate covered donut.

9:30 am - pack up transition area; share a couple well-wishes with a few guys in my area; head to the car.

9:40 am - back on the road heading toward home. I eat my PBJ and banana and start sipping on my Gatorade. I estimate arrival around 11:05 am.

11:05 am - bumper to bumper traffic on the NJ Turnpike northbound, 30 miles from my exit. Suddenly I'd like to throw up again.

So that's about what it looks like. And let me tell you: I am not even a serious triathlete. There are guys out there who are far more intense, and do this almost every weekend. But hey, look at all the stuff I got done before 10 in the morning. Not a lot of people can say that about their hobbies.

We're taking Molly to the doctor in the morning to talk about her hearing. She has been feeling great lately and has been happy Molly again. All is good. I'll post again tomorrow after we see the doctor, and I promise to actually talk about Molly this time.

Get a Grip

2007-06-18T21:50:00.000-04:00

Molly is feeling much better these days. The super-powered antibiotics seemed to do the trick as she has been less junky for the past few days. She's been extremely happy and very talkative as well. She went in the pool today, where her brother intends to spend absolutely all of his time this summer.

This morning Molly visited the orthapedist, and he gave her a good report. He said her hips are starting to work into the sockets and that her hands are looking good. We're supposed to keep doing what we're doing relative to her hip brace and hand splints.

I know last post I promised some variety of philosophical mumbo jumbo, but I haven't had time to put it together so it's worth reading. This time crunch has also gotten me thinking about the amount of time that passes between posts.

There are times where I post something regularly, and then there are spells (like the last month or two) where a lot of time seems to pass between messages. I've seen other blogs where the author only posts one day per week; others where it's two days per week. On the one hand this would add pressure on me to actually get something done on a particular day, but on the other hand it would keep you all from having to check the page on a daily basis.

So this one is for you - you're the ones reading, after all.

Would you prefer I:

Continue to post randomly; when the mood strikes or there is some news?
Post one day each week?

Feel free to vote here, or via email. Or not at all.

Sick on Your Birthday

2007-06-10T11:36:00.000-04:00

That's the worst. No one wants to be sick on their birthday!

Molly is ten months old today - 5/6 of a year - and she has stinking pneumonia

The pediatrician gave her super-powered antibiotics, and the cardiologist ok'd a decongestant, so we're hoping she kicks it quickly. I think you've all been around long enough to know what happens if she doesn't; and around long enough to know I won't say it out loud.

She is generally uncomfortable and has a lot of junk in her chest; we can hear it when she breathes. Pardon the graphic descriptor, but we're all friends here: since she can't cough the phlegm out like an adult, it gets stuck in there making it difficult to breathe. The only way to get it out is to spit it up after a feed, as she does every now and again (like just two minutes ago while I was typing this), which is disgusting to us but apparently a relief for her. She shows brief spurts of happy, smiling Molly - usually following one of these episodes (although that doesn't seem to be the case right now).

Her vitals have remained fairly stable. Since we now have a mini-medical facility set up in her nursery, we can monitor these things without going to the doctor (or that other place). So let's keep our fingers crossed.

In other news, the Triathletes for Trisomy 18 program continues to see steady contributions from far and wide. The current total is 93 donors and $17,675. Unbelievable. And if I haven't said it already, we can't thank you all enough.

Finally, your humble scribe is feeling philosophical again. I float this to you as a warning more than anything else: Either the next post will be really long and convoluted, or the next three to four will be inter-related. I've got some thoughts to put in order, but I've been asking myself some questions lately and what would be the point of this space if I didn't attempt to articulate them?

Guilty as Charged

2007-06-03T17:09:00.000-04:00

Triathlon season officially kicked off today for two members of Team Molly Bear. As a tune up for our big Team outing in July, Rob and I headed up to the Poconos for the Black Bear Triathlon: an extended sprint race. For some background, a sprint is typically a 500 yard swim, 12 mile bike, 3.1 mile run. Today's event was a 750 yard swim, 18 mile bike, 3.3 mile run. We drove the bike course yesterday to get an idea of the terrain, and in the car it seemed hard. Let's just say the difficulty in the vehicle did not translate quite exactly to the difficulty on the bike.

I finished though. That's really what it's about; making sure I am in shape for July 22. But I certainly have a lot of work to do in the next two months. Rob fared much better: he finished fourth in his age group; inside of 50 for the whole event, I'd guess.

My initial hope was to finish. My secondary goal was sub two hours. 2:18.07.

I'm not sure I've been clear: The bike was hard.

Relative to the race, fairly specific to the bike, I am guilty of numerous things:

1. Looking past the next game
It happens in sports all the time: a team looks two games ahead to a rival or a tough team, and overlooks their next game. Then they get beat by that team. I was clearly looking ahead the NJ State race, and the Black Bear put a beating on me.

2. Biting off more than I can chew
This was a tough course in the early part of the season. I was not in shape for it. A lot of that has to do with #1, the rest with #3.

3. Doggin' it
I haven't been working hard enough in the gym; I haven't been on my bike enough; I've skipped workouts. All of this has to stop now. Nothing changes your outlook like a good beating.

4. Poor concentration
Most of this post was conceived during that treacherous bike ride. I probably should have been focused on the next climb, or navigating the winding turns. Instead I was writing this post in my head, and begging for it to be over.

Which leads to the biggest thing I am guilty of:

5. Giving up
Obviously I finished, so I couldn't have literally given up. But the thought crossed my mind more than once. I actually considered just flagging down an official and having them call for a ride home. I was positive there was no way I could finish the bike course -- especially knowing the run followed immediately behind. I'd love to say I fought through it; got back in the game. But I didn't really. I just went through the motions and tried to do as well as I could having already checked out.

But ultimately the thing that kept me from actually throwing in the towel was that it's just not my style. Can you imagine if this post started off with, "Well I couldn't finish the triathlon this weekend."? Yeah I'd be pretty disappointed too. And that's another reason I kept going: I didn't want all those previous posts talking about perspective and determination to be contradicted. Not to mention that I would have had to tell my wife and little boy I'd quit.

And finally, the big thing: Molly's little face. I mean seriously, what's a hilly bike ride on a cool Sunday morning in the Poconos in comparison to what Molly does every day?

The BBQ Package

2007-05-30T13:00:00.000-04:00

How do you differentiate between a long weekend and a long weekend? I guess I could use text treatments? A long weekend would be the act of adding a day or two on the end of a weekend, and a long weekend would be a weekend that just seems longer than normal; the equivalent to a long commute. I guess it doesn't really matter, since this past weekend was both.

On top of the fact that my office closed in celebration of Memorial Day on Monday, I decided the take Thursday and Friday off as well. This extended weekend/mini-vacation was much-needed, and well used. However, we were pretty much non-stop the whole time. Basically we just packed too much into the five days, and forgot to leave any time to really take advantage of the time off.

Thursday we spent the day running traditional errands: groceries, lawn care, taking the car in for service, cleaning. Not that much fun. Totally necessary.

Friday and Saturday we had Trisomy 18 Foundation meetings at our house. We had guests from Canada and DC, and we got a lot of work done over one and one half days of pretty intense planning.

Saturday afternoon we had a BBQ; we'll come back to this.

Sunday we went to visit friends in their new house.

Monday we (actually it ended up being just me but don't get ahead of yourself) went to visit other friends for parade/BBQ.

Some other things were mixed in there as well.

For example, Friday Molly had to go to the GI doctor down in south Jersey. They changed one of her medications, and increased the dosage on the other; If that doesn't work we're supposed to try continuous feeds; If that doesn't work we're supposed to consider a j tube.

Molly was miserable for the trip home from the doctor and, in general, wasn't herself. She had a fever Friday night of around 102.

Saturday morning Erin took her to the doctor even though her fever had gone down. He said she might have a virus that's been going around and to come back Tuesday if her fever was still hanging around. She seemed to be feeling much better and gradually started working back to normal.

Saturday afternoon we had a BBQ; we'll come back to this.

Sunday Molly was pretty much her normal self again. Also, she started tolerating her feeds a bit better. The new medication hadn't been filled yet, so this was with just the alteration of the dosage of the other. In fact, I am pretty sure she only spit up once between Sunday afternoon and Tuesday afternoon. For reference, in a normal day she spits up four times minimum.

Monday Erin and Gavin woke up sick. They both had terrible coughs. They both stayed in the house all day, leaving me to play "single guy" at a family outing. I got a taste of what it's like to be the unmarried, non-parent in a house full of families. So I played the part: I drank a dozen beers, wiped sauce on my jeans, and gave the kids all the Skittles and Coca-Cola they could handle. Then I went home to my real life. Gavin actually stayed home from school on Tuesday, but both he and Erin seem better today.

Oh yeah, we had a BBQ on Saturday afternoon.

The BBQ Package

We were anticipating about 15 people; four of whom were children. I love a good cookout, and I know my way around a grill. But we figured since there were going to be several people we don't know that well, it would be better to spend more time mingling and less time cooking. The BBQ Package has it all, so why not.

Now if you haven't clicked the link to see what it consists of, please do. I mean they thought of everything. We didn't even have to buy napkins.

So I go out to pick it up at 4 pm (everyone has been there since 3) when it seems everyone will be good and hungry. We didn't put any appetizers out because it's all taken care of with this huge order.

I put the huge bags down on the floor and begin to unload the endless trays of food. To my surprise, the meat is all raw. Actually not all raw; the chicken and sausage is cooked and just needs heating. But the steak, burgers and dogs are all raw.

Are you serious?

Now please, people, give me your honest opinions: should I have known this would happen? I've told this story to several people and there have been plenty who think I should have expected raw meats. I am just wondering if there is a majority vote.

To me, you buy raw meat at the grocery store or the butcher. Restaurants sell it to you cooked.

No big deal, I lit the grill and got to work. But it wasn't part of the plan. I love the place the food came from and I am not about to boycott them or anything, but I just feel like something should be said. At the very least they need to make a change in their promotional poster to indicate the meat is raw.

Unless I am the only one who wouldn't know that already?!

When Did I Become a Grown-up?

2007-05-21T09:49:00.000-04:00

I started a post on this topic in December and it never materialized. Mostly because I was still pondering the answer. I basically determined there was no answer. It just happens.

You wake up one day, and you're a grown-up.

Well I am reconsidering that position. In some cases, apparently, you can pinpoint the exact day you wake up a grown-up. Sunday, May 20, 2007 was that day for me.

The concept of adulthood is a bit confusing. Does it have to do with age? Status? Behavior? I am not sure. Society's perception of "adulthood" is a bit arbitrary, wouldn't you say?

You turn 18 and you're an adult.

Now you can vote; You can go to war; Be tried as an adult. You still can't drink; Your parents can kick you out of the house; You can't rent a car. When I turned 18 I was a senior in high school; I'd lived away from home for more than three years; I chose not to vote; I didn't have any money. I was not a grown-up. Hell I have friends who are on the back side of 30 that still aren't grown-ups. Not that there is anything wrong with that: I just said I wasn't one before yesterday.

You get married and you're an adult.

I just don't see the connection here. You're part of a two person team so therefore you've got the added responsibility of looking out for another person. But that should just be an inherent desire. If you're married to the right person you would feel that responsibility at any age. The problem is people don't take marriage seriously anymore [obviously I don't mean all people]. And their behavior often makes it clear that they're not quite grown-up yet.

You buy a house and you're an adult.

To get a mortgage you have to be a certain age and portray a certain level of maturity. Basically you have to have a job and a steady income. An 18 year old kid who waits tables, full-time, in a fancy restaurant, can pull in 40 grand and buy a townhouse. He can use the living room for a whiffle-ball field and the kitchen for a meth lab. He's got a blackjack table upstairs where his bed should go, but he passes out on the couch in the second bedroom most of the time anyway because that's where the plasma and the Xbox are. Point being: Not everyone is sewing window treatments and working on the landscaping so they can have the curb appeal.

You have a child and you're an adult.

The philosophical aspect of this statement is so jaded I will leave it completely alone. But even for me, having a child did not make me a grown-up. Sure I had to come home at night, and even if I was a little banged up I had to get up at 6 am. But by the time Gavin was born I was steadily employed, married, and a homeowner so I was already behaving similarly to an adult.

When Molly was born, it got pretty real. We were dealing with emotions we had never realized existed; making decisions no one should ever be faced with; aging well beyond chronology. Even still, #96 in my list of the 100 things I have learned this year, which was posted on just over one month ago, referenced a denial of my own adulthood.

So what could possibly have been such an epiphany, if none of the things above - and not even the combination of all things above - made me feel like a grown-up?

Saturday night when I went to bed I looked out the front window; there was a mysterious vehicle parked in our driveway. No big deal: I wasn't going anywhere. I figured it would be gone by morning. It wasn't. Then I remembered that the mystery vehicle in question had actually been put there by my wife. And we had paid for it before putting it there. And it will be in the driveway for the foreseeable future.

It's a minivan.

I'm a grown-up.

I Never Thought it Would Be Me.

2007-05-18T11:50:00.000-04:00

It was bound to happen eventually, but, let's be honest, since I don't do much of anything related to care-giving, I never thought it would be my fault.

Last night, while changing Molly's diaper and getting her into her pajamas, I pulled out her button.

It's been in for a number of months, so the skin has healed around it, and it's supposedly removable. All in all it shouldn't have been too big a deal. But it was.

We were told the hole in her abdomen would heal like an ear piercing and we would be able to put the button back in like an earring after a few months. Well, since I was a big fan of the piercings back in the day, I have plenty of experience with putting earrings in. That is the worst possible analogy that could have been drawn.

In fact, it was more like stuffing a cucumber into the top of a Gatorade bottle. Sure, eventually you'll get it to go in, but not without some extra effort and a little mess.

She was not happy. She screamed right in my face while I was doing it. An hour later she was still mad at me. Two hours later she was asleep on my lap. She slept well and seemed comfortable. I hope we don't have to do that again any time soon. But at least we know we can do it.

Trinity won last night; I know you were all curious. Beat the number one seeded Cortland Red Dragons 2-1 in 13 innings. I listened to most of it; it sounded like an incredibly well-pitched game. The boys play Ithaca in the winners bracket final at noon today. Go Bants.

Which Weighs More?

2007-05-17T15:57:00.000-04:00

A twelve pound baby? Or a twelve pound rock?

That's right, folks, the Bear is now up over twelve pounds. This takes her completely out of the newborn category. Meaning, I don't know anyone who weighed over twelve pounds when they were born.

Quickly: wishing the Bantams of Trinity College luck this afternoon in their second round game in the NCAA New York Regional. If you read this between 4:15 pm and 7:30 pm on Thursday, click here for live radio coverage. If you read this later, click here for NCAA Regional coverage. Some of you may not know I played ball for the Bants a million years ago...ok nine years ago. The Class of 1998, my class, was actually the first Trinity team to make the NCAA tourney; we went two and a BBQ. They've done better since then.

Back to Molly.

She had a great trip to the cardiologist earlier this week. As I mentioned before, she now weighs twelve pounds. The doctor also told Erin she didn't need to see Molly again for ten months. We both said the same thing: "When she is ten months?" But no, she actually meant in ten months. When we go back next March the cardiologist is going to consult the surgeons about another procedure to remove he PA band and go ahead and close the VSD. This was also the first time we learned the actual size of the opening - it has always simply been referred to as "a large opening." According to the doctor the hole is 12 mm, just over 1 cm. That's roughly the width of the tip of my pinkie finger. We didn't ask how that related to the size of her heart, but it seems "large" is an accurate descriptor.

Good news all around. Also sort of eye-opening. You all know my superstitious tendencies and I am certainly not going to take anything for granted. I've been skeptical to even make plans for Molly's birthday in August. But hey, it can't be all bad when there is something on Molly's calendar for March 2008.

$0.75

2007-05-10T09:30:00.000-04:00

Nine months is three-quarters of a year. Seventy-five cents is three-quarters of a dollar. Get it?

Anyway Molly is nine months old today! Very, very exciting.

It's been a stretch of birthdays for us, and it's not over yet. Going back a week and a half we had UJ's birthday, Erin's mom last Friday, Erin last Saturday, Molly today, and on Sunday Dublin turns six (or 42 in dog years). And Gavin now seems to be at the age where his friends are having real birthday parties, so amidst these two weeks of family birthdays we're mixing in birthday parties for two friends.

And obviously I am not forgetting about Mother's Day. I even got my cards already. And considering last year I had to ask Erin to wait in the car while I ran into the mall - on Mother's Day - to buy her gift, I am way ahead of the curve.

Molly got some shots yesterday: two in each leg. It was her six month vaccine. I seem to remember she was scheduled for them around her six month birthday, but she was sick and had to postpone them. She took it like a pro and, according to Erin, only cried later. It was probably one of those things where the doctor pushed the needle, and then they looked at her in stunned silence waiting for a response. Then, when she noticed they were staring at her waiting for a response, she started to cry.

Doctor said her lungs sound clear. She weighs 11 lb 10 oz with her diaper on.

Starting Monday she will have two sessions a week with her OT.

Total Slacker

2007-05-07T09:59:00.000-04:00

I am hard-pressed to think of a time since college where I have just completely abandoned a fundamental responsibility. It's totally irresponsible of me and I wish there was a better excuse. Hundreds of thousands of readers have likely found a new guilty pleasure for business hours. I'd imagine the US Weekly subscription rate has increased; fantasy baseball sites are seeing a record number of transactions; iTunes movie purchases have gone through the roof. And here I am thinking my lack of attention to this space only has an impact on me. Selfish, selfish man.

However I have said this before: when Molly is healthy I am less likely to post and more likely to enjoy her health. And I have been consumed by my full-time paid job, my full-time volunteer job, and my full-time training job.

Since we recently came clean to the fact that this is all about me, I may as well start there (if I haven't already).

The Triathletes for Trisomy 18 program is off to a roaring start. The early and generous participation has been as impressive as it has been humbling. The number of people who stepped up and contributed early has completely changed the perspective of the program. Our original goal was $10,000 and thanks to the 49 people who have given in the last two weeks we are merely $100 from that total. With this continued motivation from teammates and generosity from donors, I would not be surprised to see the total go up over $15,000. This would be a nice base for the Foundation, and a tremendous kick-start to a national program. Bottom line: thank you, thank you, thank you.

In preparation for the big race in July I have run in two 5k fun runs in the last two weekends.

The first was part of a larger celebration at Giants Stadium as we broke up the offseason with a Draft Day tailgate party. Even though the season is still months away we got together with some adult beverages and grilled meat products and spent the morning talking about who the Giants needed to draft to improve on last season's 8-8 record. Then we went inside the bubble and watched the draft on TV. Anyway before all that started I ran a 5k.

Then this past weekend, as part of a larger celebration at Lawrenceville, I ran in the Big Red Race. This race was the end to Alumni Weekend where 1200 of our closest friends come back to school for a weekend of parties and dinners and sporting events on campus. Since I work in the Alumni Office I get to partake in this splendid event. And by partake I mean work from 8 am until midnight Friday and Saturday. Nonetheless, it's a lot of fun.

The best part of the BRR is the kids race. Last year Gavin ran with the "Under 3" crew in the 25 yard sprint. He got a little nervous half way through when he couldn't see daddy at the finish line, and he ran back to Mom screaming his head off. This year he moved up to the 4-5 year old group at 50 yards, and ran it three times. Well only twice officially, but after he ran it with the girls the first time, he had to sprint back to the start line so he could run it with the boys. So three 50 yard legs, two races, no spills, no tears, one medal. Next year he is running the 5k with me.

Saturday was Erin's birthday, but since I was at work all day we didn't do anything special. In fact, we only saw each other for like eight minutes all day. Colleen and Steve were in town for their baby shower, which was Saturday afternoon, so she at least got to do something fun on her birthday.

Everyone will be glad to know that a couple Fridays ago Erin and I finally went to Changs. We had an excellent dinner. It was a little loud, and a little dark. I think that basically means we're getting a little old. But good times, nonetheless.

Now for Molly. As I said, all is well. She seems to be tolerating her feeds better lately. She has been sleeping well. Thanks to the exercises her mother and OT do with her, she is starting to grab hold of things, and balance herself when she is propped up in the boppy. So she isn't exactly sitting up, but let's see anyone argue with me. We were supposed to take her for a feeding clinic last week, but our cardiologist, who works out of the same office, called to tell us that would be a waste of time and money. We'd have had to pay a co-pay for each of the five specialists who participate, and they wouldn't likely have been able to help much anyway. She also had a hearing test a couple weeks ago that she failed. It's a pass/fail test, there are no varying degrees. We're scheduled for a more comprehensive test in a couple weeks where they will hopefully measure the degree at which she can or can't hear. We know she can hear. I don't care what the test says.

Ok so I feel a little better. There are new pictures on the Shutterfly site; I have updated on a couple weeks worth of happenings. Perhaps I can get myself back on schedule and keep this space more up to date. I monitor the traffic on the site, so I know people are checkin in daily. Thanks for bearing with me.

Triathletes for Trisomy 18

2007-04-24T11:59:00.000-04:00

The T for T18 page is set up on the Foundation web site. You can get to it by following this link. I'm also going to add it to the permanent links section to the right. An email will be coming to many of you in the very near future. Thank you in advance for your consideration.

Late Week Ramblings

2007-04-20T17:13:00.000-04:00

It's been a week since my last post. I apologize for that. However, I have said before that when all is well with Molly I tend to have less to say. And, thankfully, she has been doing quite well. Making her smile and laugh does not get old.

In my Drafts bin right now are several follow-up posts on my Hospital Rating System. I just haven't been motivated to complete them.

And it's also been a weird week for me emotionally. The tragedy on the Virginia Tech campus is still so fresh in my mind I find it difficult to feel sorry for myself. I don't remember what number it was, but somewhere in the top 50 of what I've learned from 100 posts is, "no matter how bad it is, someone has it worse" or something like that. Psychologically, I can't even compute/comprehend/grasp. I just don't get it.

Not to make more excuses, but I've also just been plain busy.

Most of you probably read Erin's recent CaringBridge update that explained what I've been up to on the volunteer front. I've recently joined the Board of Directors for the Trisomy 18 Foundation and I have been working closely with the Executive Director to create some strategies for increasing the cash flow of the organization to help further its mission. Much of the work is long-term, and most of it would not be interesting to my faithful readers. However, in the short term I will be collaborating with a team of triathletes to help pilot a program where we actively raise funds for the Foundation through sponsorship. I casually mentioned this effort in my previous post, and Erin described it a bit in hers. The email should be out shortly with full details and the variety of ways you can help. Donations to the Foundation are just one way.

For the record, I have no idea how I am going to complete this race. By this point last year I was well ahead of where I am today. And last year I was only running a sprint distance!

I know I have mentioned the Foundation before and there are plenty of links to its web site in this space, but, seriously, if you have never taken the time to read any information on T18 besides what I post here I would urge you to go ahead and do so. All the stories are so remarkably different, and all the people are so inspirational.

The Foundation web site recently launched a program called Legacy Pages. I'll actually be using this capability to enable online fundraising for the NJ State Triathlon, but most of the pages that are up now are parents telling the stories of their children. It's hard not to notice that the majority of the children have passed. This link will take you right to the pages, if you're interested.

My mom is in town for the weekend. It will be nice to spend some time with her. And the weather is supposed to be really nice. I'm looking forward to getting outside and running/riding my bike. No reason to prolong the weekend any longer.

Two Thirds Old

2007-04-13T23:58:00.000-04:00

Earlier this week Molly Bear turned eight months old. Very exciting. She weighs just under eleven pounds after losing a fair amount of weight as a result of her recent hospital stay.

She's been having a great week: tons of smiling; a lot of movement; minimal spitting up; and all around comfortable.

It's been less great for Erin and me as we traded a stomach bug earlier in the week, and I now have some annoying cold thing. But it's not about us, it's about the Bear. And she is eight months old and happy about it.

Speaking of anniversaries, ours is Sunday. Seven years. Unbelievable. You'd think we'd finally be going to Chang's, but we're actually going to try some new place not far from here. We figure we've waited this long for Chang why not put it off a while longer. Plus my mom is coming to visit next weekend so we're hoping to take advantage of the extra hands in the house and sneak off for dinner one night. Two weekends in a row out to dinner. Alert the media.

Be on the lookout for an email from me in the next week or so. I am going to begin a fundraising effort for the Trisomy 18 Foundation that will hopefully help bring in much needed funds for the organization's mission, and keep me focused on training for the NJ State Triathlon in July. I hope we can count on all of you to help us out. More to come.

What Have I Learned in 100 Posts? (51-100)

2007-04-10T21:17:00.000-04:00

So I banged out those first 50 pretty quickly. I thought it was going to be a little harder than it really was. So without further ado, the rest:

51. My short game suffers the most when I don't have time to practice.
52. Being angry is a waste of energy.
53. When it come to gyro: Greek Lady. If she isn't around: Efes.
54. It is possible to sleep on a stool if you're tired enough.
55. The Family Sleep Rooms at CHoP, while a nice gesture, are just barely big enough for a full-sized human male.
56. Theoretically one could watch The Office on a small screen in the corner of their monitor, while doing actual work on the remainder of it.
57. The last year has been brutal, and I can't even imagine how much worse it would have been without my in-laws.
58. What doesn't kill you does, in fact, make you stronger.
59. The Unsinkable Molly Brown was a reference to Margaret Brown, a wealthy American socialite and philanthropist, who survived the sinking of the Titanic.
60. Molly Brown was wealthy because her husband, James Joseph Brown, hit it big in the Colorado gold mines.
61. My grandfather's name was also James Joseph Brown.
62. We knew none of this before our daughter was born.
63. The Unsinkable Molly Brown is now a reference to my daughter.
64. If not for my buddy Rob, my dog would have to "hold it" for 15 hours more often.
65. Easter mass on the 18th green at Harbour Town tops any other.
66. A baptism, in the hospital, less than two hours after delivery, is an experience you'll remember forever.
67. Ditto having eighteen people in your hospital room at one time.
68. Karma wins.
69. It is possible to convince yourself that something you have said or done has created whatever challenge it is you're facing.
70. That's why karma wins.
71. Our pediatrician has an "I [Heart] Hot Moms" t-shirt too; I bought it for him.
72. It is possible to re-insert an ng tube almost anywhere; including a restaurant, a table in a break room, the back of a car, etc.
73. Regardless of how good you get at re-inserting them, the person to whom the tube is attached will always be better at extracting it.
74. I am incapable of being serious for too long.
75. Not saying anything negative is harder than you'd think.
76. It's possible to fall asleep in the Meadowlands while 80,000 people make a lot of noise.
77. They make Burberry shirts for babies.
78. You can't explain it, but moms just have a way of making things ok.
79. There are times when McDonald's is actually precisely what you need.
80. Molly doesn't like to have surgery, so she puts it off until she decides she is ready.
81. Hundreds of people will come out for a pasta dinner on a rainy, cold, Friday night, if they believe in the cause.
82. There is no way to sufficiently express your gratitude to people who would do something like that.
83. Have I mentioned anything about how much I love my wife?
84. Macy's in Herald Square may have the real Santa, but there are still seven fakes up there with him.
85. The Internet is taking over - otherwise I would never find out that Molly was coming home from people who read my wife's CaringBridge journal before me.
86. The terrific people from Peapod will do all your shopping for you and bring the groceries right into your kitchen.
87. There may not be anything worse than a person who thinks they know what they're talking about.
88. With very little difficulty, people I don't even know can find and read all this stuff.
89. I actually pretend they want to.
90. There are certain times during the day when it takes longer to go the last four miles to CHoP than the first 40.
91. Not only do the numbers on the monitor mean something, they're not all that hard to understand.
92. Every hospital has a play room, and you need a three year old to find it.
93. If the parking garage doesn't validate, it may be cheaper to take a car service.
94. It's possible for a baby to spit up after every single feeding, and not even seem to care.
95. If everything happens for a reason, I'd like to know what it is.
96. I refuse to admit I am old enough to have grown up problems, but that doesn't change the fact that I do.
97. There are some things you just don't talk about.
98. No matter what.
99. I'm a touch superstitious.
100. There are a lot of people out there looking out for us. So thank you.

Seriously though, there could be a hundred more things I've learned in the last year. And probably twice as many on a list of, "Things I Haven't Learned." There is no way I could acknowledge everyone who has had an impact on us in that span of time, nor could I appropriately thank you all for doing the things you all do to show you care. I just have to hope you know who you are, and what it means to us.

What Have I Learned in 100 Posts?

2007-04-09T14:49:00.000-04:00

So the other day yielded post number one hundred in this space. You may recall I said there was something going on in my head that led to the seemingly meaningless BLOG entry? I've been reading back over old posts. In fact, over the last few days I think I have read every word in all 100+ posts. It seems there was a gradual progression where the dynamic shifted. I'm positive it wasn't intentional. I am not even certain it was conscious. But at some point in the last year, it happened.

As it turns out, this blog, although entitled Molly Elizabeth Brown, is actually about me.

It's a sham, I know. I apologize. All this time I have been lying to you. But let's face it, if this were called Sean's Blog I wouldn't even read it. My readership is at an all-time high, and I have recently gone international, but I'll understand if you just want to call it quits.

This started as a place to inform people about Molly's condition and what was going on. It was meant to be all about Molly. And now it has some of that and, additionally, some of my thoughts about life in general. But what is it really?

It's completely filtered. It's completely censored. It's me writing only the things I want to share. Occasionally I offer some quick glance into my most intimate thoughts, but they're only my most intimate shared thoughts. There is an entire segment of my brain that exists only in that very space - not in this space. I often find myself driving in the car; or sitting on the couch; or in my office, when I am faced with a thought. That thought is then twisted around in my head until it becomes something I am willing to discuss here. In its raw form I'm not certain it's suitable for public consumption.

But I will say this: in the few instances where I have let my guard down and more than alluded to - but actually expressed - real emotions, I have been impressed by the people who have picked up on it and called me on it (offline comments; emails; phone calls). In most cases they had advice to offer that was worth listening to. In some cases it was just nice to know people were paying attention.

I want this site to be more than just a place where I give a daily (or weekly) update on Molly and how she is feeling; I'd like this space to be useful; maybe help someone learn something.

That may be asking too much of myself, but for now, I'll start with what I've learned. One hundred things, in no particular order. And if this were a reading comprehension exercise, many of these probably would not be found in the existing text:

1. Trisomy 18 occurs in about 1:3000 live births and is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%) live at least one year.
2. Statistics, these in particular, can be frightening.
3. My daughter is tough as nails, and is determined to be part of the <10%; if she has anything to say about it she will be part of the smaller percentage that lives for many years.
4. Optimism is a powerful emotion.
5. Realism always trumps optimism.
6. You can think for your entire life that certain issues are black and white and as a result would never render making a decision difficult. But unless you've been forced to actually make that decision, don't be so sure.
7. Spending hours alone with your thoughts is healing.
8. Spending hours alone with your thoughts can make you crazy.
9. My son kicks more ass than Daniel LaRusso.
10. I feel badly for people who have no one looking out for them.
11. I question whether or not people who have no one looking out for them are looking in the right place.
12. Complete strangers can become close friends just by doing something to show they care.
13. People who genuinely care are never worried about saying the wrong thing.
14. People who don't actually care make it clear by saying nothing.
15. I don't dislike people as much as I thought I did.
16. Faith doesn't define you, it directs you.
17. Praying doesn't necessarily mean you go to church, kneel in the pew, and ask God for forgiveness. You can simply sit quietly and ask no one in particular if they can help get you through the next five minutes.
18. It's not going to get any easier. That's true for just about anything.
19. The fastest way to get completely out of shape is to stop exercising and eat take-out and/or hospital cafeteria food for one month.
20. It only takes twenty minutes to get from my office to RWJ in New Brunswick, when my wife calls to tell me she is in an ambulance with "lights and sirens."
21. Genetics counselors, so far, have not knocked my socks off.
22. Nurses, so far, have completely amazed me. In every hospital, on any floor, in any scenario, nurses rock.
23. Perspective is a funny thing.
24. One of these years I am just going to give up cheese for Lent.
25. My dog can "hold it" for fifteen hours, if necessary.
26. The flexibility I've been afforded by my employer has been invaluable.
27. The medical benefits made available by that same employer have enabled us to continue living in our house.
28. My grandfather said a lot of things that make more sense now.
29. Family is a relative term.
30. Our family - immediate, extended, or otherwise - keeps us from breaking down.
31. Nurse practitioners can prescribe medication. And on top of that they get to wear street clothes.
32. As bad as it gets, someone has it worse.
33. The spider dies at the end of Charlotte's Web.
34. There are times when I can write for hours without stopping.
35. There are times when I go days without thinking of something worth writing.
36. The phrase "worth writing" is completely subjective.
37. My wife is a saint. She is well over the three miracle requirement.
38. I really, really love the New York Giants.
39. I really, really don't the New York Times.
40. Molly knows exactly what I am saying to her, and her expressions are as good as a verbal response.
41. Tomorrow comes whether you're ready for it or not.
42. There are not enough hours in the day to do all the things you want to.
43. There are barely enough hours in the day to do all the things you need to.
44. There is no way to put more hours in the day, unless it's the one day at the end of Daylight Savings Time.
45. Occasionally people know what you're talking about when you say Trisomy 18 and when they do it will likely catch you off guard.
46. There is a web site where many of those people congregate and this web site has been an invaluable resource for us from day one.
47. The people who run the organization that makes that resource available to us, mostly do so for free and I was so impressed that I recently volunteered to join them.
48. I find it hard to believe my little boy doesn't know what's going on, which makes me even more proud of him.
49. I'd have to say the same about my little girl.
50. There is a point in time where people grow tired of reading things, even though you may not be tired of writing them. This is a good point at which to stop.

Fifty more to come. But not too soon.

Happy Easter

2007-04-09T11:04:00.000-04:00

We had a nice relaxing weekend and managed to get some new pictures on the Shutterfly site. Gavin had a boatload of egg hunts and never seemed to get tired of them. I think he was sneaking candy the whole time, to be honest with you.

Molly's been doing really well the last few days: she is tolerating her feeds well and sleeping like a teenager. When she is awake - as she was all day yesterday - she is alert and happy.

When we got home last night we were all exhausted. Gavin managed to stay up talking to himself in his room until after 9 pm. Molly made it through most of the Sopranos. Mommy didn't even come close. It always amazes me that I can be physically tired from doing virtually nothing. The price you pay for the benefit of sitting around for a couple days, I guess.

Molly Likes Holidays

2007-04-06T08:50:00.000-04:00

Molly has returned home after nearly two weeks in the PICU at RWJ. It seem she likes to make it home for any major holidays. But we're planning a small Easter gathering to minimize the exposure to people, hence germs, hence respiratory infections. We're not "those parents", by any means, nor do I feel we would need to explain that to anyone, but we're going to do our best to keep her out of the hospital for as long as possible.

She slept in her bed last night and was perfectly happy doing so. She spent a few hours in her bouncy seat before bed. Gavin is extremely excited his mom and little sister are home. Erin is relieved to be home. I am looking forward to resuming my training schedule (I have five triathlons scheduled this summer, the first of which is June 3, and I have been on my bike and in the pool just twice).

So all is well for now and I have only good to report. Lent is almost over and I am not sure how I fared overall in my sacrifice. I think I did pretty well, considering.

In the works: "What I've Learned in Posts 1-100". Hopefully that gets done this weekend. Thanks for checking in. It's nice to know you're all out there.

Journal Update Notification

2007-04-04T15:43:00.000-04:00

Since I am apparently the last person to sign up for Erin's Journal Update Notification, I presume most of you have heard the good news about Molly's impending release from RWJ. You know my deal: a little superstitious; don't want to jinx it. But it seems likely tomorrow is the day. Report is that Molly had another great day today and she and Mommy enjoyed some cartoons, and a few cooking shows [not sure why Mom would be watching those since she doesn't cook anymore]. But, again, you all probably knew that already.

What a Difference a Day Makes - Post 100

2007-04-03T08:27:00.000-04:00

Seriously, when I got to the hospital last night to visit Erin and Molly, it was like I was walking into a different room. Well, actually, a lot of that had to do with the redecoration the previous night's nurse had undertaken for some feng-shua or whatever that stuff is. But it was also like a different little girl was there.

Molly looked fantastic: Her color was much better; her breathing was easier; her numbers looked good; and most importantly she seemed happy and comfortable.

If you had asked me over the weekend when she would be coming home I would have told you there was no way to guess. If you asked me now I would tell you she is heading in the right direction. I won't jinx it, but she seems to be making good progress.

I'm sure the celebrity treatment she got from her nurse yesterday, and the short walk they took outside, helped the healing process. I'm glad I made the drive up there yesterday afternoon, even though it was only for a half hour. Seeing her that happy made my day.

Now for the part that excites me and no one else: This is the 100th post on the Molly Brown blog. When I think back to post number one, on March 10, 2006, this space has come a long way. And when I read back that far, I am reminded that we have too.

Karma - Brown XII: Hostility in the Hospital

2007-03-31T12:22:00.000-04:00

"...and fighting out of the purple corner, with an unblemished record and all wins by knockout, Karma!"

I'll sugar coat it for the benefit of my loyal readers: this morning has been wretched. Molly stopped throwing up around 10:30 last night, and slept well after about 12:30. She woke up alert around 6:45. Since 8:30 she has been crying.

She just settled down a few minutes ago, but she is not sleeping so I expect an interruption to the silence. She seems fairly comfortable now, but the loose coughs upset her and then it takes her a while to settle in. Her fever is back. She is off food again after being on briefly this morning. Her heart rate is steady; she is on room air, with the cannula blowing one liter gently in her direction; pulse/ox hovering around 80 (as long as she is over 75 the doctors are satisfied).

The kicker is that I feel terrible. I know I said I would not respond to anything short of a "Code Orange", but, of course, that was not taking into consideration the fact that I could be the "Code Purple". They haven't called it yet, but the nurse is clearly keeping an eye on me. In our ongoing battle, Karma came out swinging this morning and has me light-headed and incredibly nauseated. If I could keep my mitts up long enough to be defensive I might stand a chance. But I am pretty much just hanging in there hoping for a bell. Otherwise the knockout punch is coming.

The good news is that the bed is hard as a rock and the shower is a few inches bigger than I am. So I have no chance of getting the things that typically make one feel better.

Freakin' Karma.

Late Night Molly Update

2007-03-30T23:03:00.000-04:00

Molly had a pretty good day today. I got here at about 6 pm and got the full download from the day time nurse.

So far tonight she's had a rough time. Oddly, she's been throwing up a lot.

The doctors have decided to discontinue her feeds for now in hopes that she'll stop. Her cough is pretty loose, so it may be that that's upsetting her stomach. Her lungs sound really clear, however, so it seems the coughing is helping.

She's on the nasal cannula and her numbers are good. They're going to let her sleep with that cannula, as opposed to the CPAP, and see how things go.

Right now she is coolin' in her bouncy chair, which is in the crib, and watching her mobile that we brought from home. I am not sure why she won't go to sleep, but she won't. And if she keeps coughing and chucking, I won't either.

There were two separate "Code Purple" calls a little while ago. Both on this floor; on the other side. I came to find out that Purple is for something happening to someone who is not a patient. The two calls were unrelated to one another, and in very close proximity. Maybe they both had the fish for dinner? "Code Orange" is a bomb threat. So while I am concerned for the two Purples, and I hope they're ok, I won't be reacting to anything short of an Orange.

You Might Live in a Hospital If - You Have a Rating System

2007-03-26T23:01:00.000-04:00

When you go to Vegas you want to stay on the Strip, and if possible in a five-star hotel. If you're trying to impress a girl, or a client, you take them to a five-star restaurant. Some people [not us] spend their honeymoon at a five-star resort. Titanic was rated by many, not me I refuse to see it, to be a five-star film. Seems to make sense that five stars is the most you can get, and to get five you have to be good.

So for the sake of competition, let's get some ratings out there. I'm going to tell you who has the best and worst of everything from pillows to paninis. We'll rate all kinds of things from the four hospitals we have visited since Molly was born in August. At the end we'll add up all the stars and see what we find. To make it easier on me I'm using a four-star system and ranking them against one another. Four is the best and one is the worst; anything in between is just in between.

Category: General

Parking - it's easy to find parking at all four places and there are an adequate number of spaces in all four places as well. I've never been unable to find a spot in any of them. Visitors, on the other hand, find it more difficult to park in some than others. RWJ validates for $2; CHoP $3, but their rates are far higher; Princeton ocassionally has no attendant so it's free; St. Peter's garage is the most accessible.

****SP - Close proximity to the hospital; validation; good rates for those who can't (or forget to) get validated.
***UMCP - Close to hospital; plenty of spaces; good rates; chance for free exit.
**RWJ - Pretty far from hospital; good validation; decent rates; limited spaces.
*CHoP - Really far from hospital; good validation; expensive rates; limited spaces; bizarre phenomenon where it might take 20 minutes to get through the line to exit the lot.

Security - The strange thing about all these hospitals is none of them are in particularly nice neighborhoods. Even UMCP, which is in the town of Princeton, is in the least attractive part of town. So security could be an issue. Some of these places have a human presence, others have electronic security, some have pretty much nothing.

****CHoP - They'd get more stars if I were giving out more than four. You can't get anywhere in the building without showing your bracelet. Someone checks you at every door and before entering any elevator.
***RWJ - There is a security person at the main entrance, but you don't have to check in with them or anything. They make their points in that every door is locked and has to be opened by someone looking at you on camera. You press the button; they ask you why you're there; they open the door; then they check you out.
**SP - They have someone at every door. I was actually detained at one point while they checked my ID and called up to the floor Molly was on. They lose points because this happened the night after someone entered the building and snuck into multiple patients' rooms to play with their feet. It was on the front page of the paper.
*UMCP - How can they be worse than SP you ask? Well they have no security at all. When Gavin was born my buddy, Tall, rolled in with a six of Miller Lite and a large Conte's and made it from the parking deck all the way to our room without anyone saying a word.

Physical Plant - These hospitals vary quite a bit in size. They also span the spectrum in age. They're all completely different from the next.

****CHoP - This place is gigantic. And it's modern. And it's fancy.
***RWJ - It looks pretty new from the outside. The Children's Hospital is brand new. There are some places that look pretty dingy inside, but for the most part it's nice.
**UMCP - It's small in comparison, and from the outside it just looks like a building. It's not terribly fancy, but it's not bad. The rating system is inflexible; it's third best.
*SP - If I could give it fewer stars I would.

There will be more categories. Scoring will be cumulative. So far it goes like this: CHoP (9), RWJ (8), SP (7), UMCP (6).

RWJ Stay Three; Day Three

2007-03-26T20:22:00.000-04:00

Things change pretty quickly around here. I just sent an email to a friend a few minutes ago and stated that Molly's fever was down. Literally a few minutes ago I was saying this. Now it's back. At that point she was also asleep. Now she is not. She is quiet right now though. And a few minutes ago she wasn't. So when I say I am trying to keep everyone updated, you should know that by the time you read what I post it may no longer be accurate. I can't even promise it's accurate by the time I post what I type.

There is something just wrong about watching 24 on this little TV with the sound coming from this tiny speaker on a remote control with a wire attached to it. So I am not going to watch it. Please don't tell me anything about it. Seriously.

According to recent test results, Molly doesn't have RSV or the flu. That's all I really know. She is still on oxygen, but it's down to about 30% and her pulse/ox is still in the low 80s. I'd like to see it higher, on less oxygen. I'm not a doctor, I just play one in real life.

She is so tired that she doesn't even want to cry. I mean she wants you to know something is wrong, but she wants to do so while using the least energy necessary. The worst is when she sneezes or coughs though; you can tell how much it hurts. All kidding aside, she is way tougher than I am. You too.

So I am going to kick it with Molly tonight; get some work done real quick; catch up on my reading. I am also going to try to catch up on some emails. So if I don't send you one, and you think I should have, please feel free to remind me tomorrow.

The Tale of the Oatmeal Blueberry Pancakes

2007-03-25T08:33:00.001-04:00

For those of you who are only checking in to see how Molly is doing I will spare you the suspense: I haven't talked to Erin yet so I have no update.

This is about breakfast.

I figured since the kid really wanted them I might as well make them. So after a Google search, and a few friendly recommendations from afar, I decided I would go ahead and make them from scratch; trying to keep it as healthy as possible. I will say they turned out nicely after I stole bits and pieces from various recipes. I wanted to take a picture, but I can't find the camera.

It took a little longer to make them since I had to do some research, but I thought making Gavin wait a little while would be a fair trade for him making me get up before 7 am. We decided to have a sleepover in mom and dad's room last night and despite being less than half the size of his mother (who has no concept of even distribution of mattress space) he actually takes up more room. At times last night he was actually perpendicular to me, at one point even seeming as if he was trying to push me off the bed with his legs.

So in the end the pancakes came out looking and tasting great. There is one minor adjustment I would make next time, but I am happy about it. Gavin sat down and started eating and couldn't stop telling me how good they were. He even said he'd be having another when he finished his first two. Then he lost some steam, and here's the kicker, he told me, "blueberry isn't really my favorite. I'd rather just have clear pancakes." He also suggested maybe using Craisins.

So I guess my next "from scratch" will be Gavin's Clear Pancakes, but for my first I give you "Solo Dad's Sorta Healthy Blueberry Oatmeal Pancakes":

To make oatmeal mix one cup water with 3/4 cup instant oats and microwave according to oatmeal package. In a small bowl beat one egg and milk like you're making a scrambled egg. In a medium bowl mix the following dry ingredients: 1/2 cup flour, tsp cinnanmin, tsp baking powder, 1/2 tsp salt. Mix egg mixture into dry mix until well blended, add oatmeal and stir completely. Then add a 1/2 cup frozen blueberries to mixture and fold in (that's the change. I used about a cup).

I used a griddle and heated to 350. They cooked for about 3 minutes on each side. Flip when the edges start to crust.

We topped with a tablespoon of low fat vanilla yogurt (rather than butter) and maple syrup.

I doubt this is at risk of becoming a regular thing, but maybe something easy like this will come in handy for some of you. Next time you want to impress your kids/wife/girlfriend/random girl who came home from the bar with you but you think you may want to see her again rather than let her sneak out of the house while you're in the shower, you can make pancakes. Although in order to do that you need to have some basic staples in your arsenal, and I feel like most of the people I am thinking would benefit from this need recipes using only ketchup, light beer, Chinese take-out condiment packages, and baking soda.

What a Miserable Grouch

2007-03-24T19:21:00.000-04:00

That would be what people are saying about me. Not that I am normally miserable. But once I get sick I become this hideous beast. And I've been sick all week.

Plus as it turns out I am a much more negative person than even I anticipated. I thought I had issues with aggressive driving, but I kicked that without incident. Since giving up negativity for Lent I am appauled by how easily it flows.

Anyway to the business more interesting to the audience:

This was supposed to be a big weekend. Erin and I were heading to a Dierks Bentley concert last night and then Erin was going to go down to AC for a bachelorette party tonight. So the concern for being left solo with two children for over 24 hours was far outweighed by the excitement for the DB concert. Then the spiral.

Molly was up a lot of Thursday night and had a fever for most of the day Friday. She was extremely irritable around dinner time and Erin and I decided to skip the concert because we knew it would be a rough night for Molly. Gavin stayed at Grandma and Grandpa's for his much-anticipated sleepover, but Molly came home with us. Her breathing was labored, her fever wasn't going away, and her mood was sour. We put her on two liters of oxygen and her pulse/ox was in the low 80% range. That's where she should be on room air; with oxygen she should be in the 90s - especially with that much. She ended up sleeping for maybe 20 minutes at three different points during the night. It was miserable.

So this morning I took the Bear to the pediatrician. He never even took her out of the car seat. He told me to take her to the hospital. I called Erin, who was getting ready to leave for the big bachelorette evening, to tell her we were going to RWJ. She decided it would be best if she came too, and so I picked her up on the way.

Molly was brought into the Pediatric ER (third time in the same pod) and stabilized. She was in really bad shape for a while, actually. She looked as bad as she's looked since the first time in that pod on October 18 (two weeks before heart surgery). They worked her into pretty good shape in a hurry, and aside from being really tired and uncomfortable, she was fine. We were admitted and brought to a room in the PICU at around 2 pm.

As is always the case, there were numerous tests. These typically involve gathering blood, mucous, and urine. These are all sent off to some lab to test for a variety of things and then gradually the doctors can narrow it down to something. They also did another chest x-ray. The first thing they told us was that although little had changed since her previous x-ray, it did look like she had some pneumonia in her right lung. They also said that she was presenting with some symptoms of meningitis and encouraged us to let them do a spinal tap.

Imagine if you will your humble author sprawled comfortably on the "bed" watching a movie and dozing off while Erin deals with yet another doctor or nurse or nurse practitioner coming in to look Molly over [she handles that because, well frankly, she is much better at listening and remembering and answering the questions that are actually being asked]. Half asleep/engrossed in a movie I've seen seven times I notice they're there, but I am paying little attention until I hear the words "spinal tap" and suddenly spring into action.

Last time we were there we were told they'd like to do a spinal tap because there were some symptoms of meningitis - same doctor said it, in fact - and Molly turned out to have a urinary tract infection. Erin knows I am not a fan of the spinal tap and thus was looking for me to interject. I simply asked if we might wait until some other results came back before jumping to an assumption that required a needle to be stuck in the very vehicle that enables my very petite, nearly eight month-old daughter to move the little bit she is able. The doctor pushed back a little on the time we would lose by waiting. I pushed back with a maybe we can split the difference recommendation.

In the end I lost. Ultimately I am not going to refuse medical care that may be necessary, but I am going to register my disapproval. And I did this one last time, as I was signing the consent form, just for the record. We were asked to wait outside while the "lumbar puncture" was administered - as if we were planning to stay there anyway.

By the way Erin just called me a few minutes ago to tell me the spinal tap results came back negative.

So now Erin and Molly are at the hospital while Gavin and I are home for a sleepover and some oatmeal blueberry pancakes for breakfast. He's been asking about them all week, and Erin says I told him I'd make them, but I have no idea how and I can't find the recipe. So, basically, help a brother out if you can tell me how to make them. Or why anyone would want them.

A Well Written Article and a Babbling Blogger

2007-03-19T08:46:00.000-04:00

This article is written by a father who lost a child to Trisomy 18 in 2005, and also happens to be a reporter for the paper.

I was struggling with exactly what to write about the last article I shared, and I am glad I didn't spend too much time on that exercise. My main point was that I wanted people to see a perspective other than my own on the subject. That article was mostly about hospice care, and at points a bit slanted toward religion, but it did a great job of telling the story and letting the reader see into the lives of the family. The video was fantastic, because it was almost entirely about the people.

This article is right on the money, mostly because it's written entirely by someone who has been there. I feel like I know this author, through the emotions he articulates, and I can't even relate to his ultimate grief.

Basically what I want everyone to see is how lucky we are that Molly is doing as well as she is - I celebrate her triumphs in this space with news like monthly birthdays and saliva bubble tricks; and I share her pitfalls in terms of high fevers and regurgitated formula - but at the same time we have to be sure to keep it all in perspective. This is a serious condition, with one in 3,000 odds, and no treatment programs. We've been fortunate to find doctors who are willing and able to perform the surgeries she needs, and provide the care she deserves, but this is not always a luxury people are given. Often people are told, "Enjoy the time you have. Keep her comfortable."

If baby steps count for anything there have now been two articles published in the last week, in newspapers that circulate to over two million people, discussing a condition that I had never in my life even heard of before March 13, 2006. Hopefully it helps raise awareness. Perhaps even get some more people to join the dedicated few who have been working feverishly behind the scenes to support those one in 3,000 and find the data needed to make it more like one in 30,000.

If You Have to Ask

2007-03-16T21:42:00.000-04:00

I've heard that if you have to ask how much it is, you probably can't afford it. I just assume I can't afford it no matter how much it is, so I buy it without asking so the person selling it thinks I can afford it.

The same seems to be true of a lot of things. If you have to ask, you should probably carefully consider what follows. Think about it: how often do you say, "Do you mind if I ask you something?" This is inevitably followed by something personal or potentially offensive: "Could you loan me $5,000 so I can buy that plasma TV. I'm not sure how much it is but with $5k in my pocket I am sure it's in my range."

That's obviously a silly example, but I hope it makes sense. It's basically the same idea as checking the price: If you're seeking permission to ask the question, you should probably reconsider the question.

Mind you this all stems from my Lenten sacrifice. Since I pledged to give up making negative comments, I am usually careful to consider what I say before I actually say it [This has not been without setbacks, of course. See sometimes my mouth works faster than my brain and completely ridiculous things just come spewing out. Like when I was watching American Idol the other night and I saw the big kid with all the curly hair and rather than taking the time to say something positive - well or even meet in the middle with something only slightly negative - my reckless trap let out, "I can't believe someone married that guy." What a jerk. I know. But at least he wasn't there to hear me.]. This also makes me more attentive to what others are saying. I have decided that it would serve everyone well to take a minute to think about what they're saying before actually doing so. It might make the world a happier place to live; albeit less fun.

Get to the point already.

I was once told that there are only three things you should absolutely never ask someone: 1. How much money do you make? 2. Why don't you have children? and 3. Are you two sleeping together? These are three things you should ABSOLUTELY never ask, and if you take a couple minutes to analyze them, it'll make perfect sense. In addition, however, there are a number of things you should probably never ask, and most of them are prefaced with the request to ask them.

"Do you mind if I ask..."
"I hope you don't mind me asking..."
"Would it be okay if I asked..."
"Can I be honest with you..."
"Will you be honest with me..."

Obviously this isn't a hard and fast rule. "Will you be honest with me? Do these pants make my butt look big?" or "I hope you don't mind me asking where you got that burrito?" are clear exceptions. However, in my humble opinion, "Would it be okay if I asked if those are real?" and "Do you mind if I ask what's wrong with her?" are never appropriate. Especially if they're designed to start a conversation with a stranger.

Now let's just assume for a moment mine are not real. And there I am in the plastic surgeon's reception area where I am waiting to see Dr. Boneshaver about some rhinoplasty. I may be perfectly comfortable extrapolating that the buxom young woman next to me has already enjoyed the good doctor's services, but would it be appropriate of me to ask her about it? Perhaps. Maybe if I were to say, "I hope you don't mind me asking? Do you know anything about this doctor?" But certainly not if I were to say "Do you mind if I ask what's wrong with those?" She might be there to talk about fixing a scar from her knee surgery; or his daughter, waiting to go to lunch. You can't presume to know anything for certain, even if the environment suggests you should.

I know, I know. The point.

The other day when we were in the waiting area for Molly's follow up to her g tube surgery, a woman approached us holding her baby. I'd say the little girl was nine months old? She was cute. She had earrings. Nodding toward Molly, in the general direction of me and Erin, this cute little girl's mom says, "Do you mind if I ask what's wrong with her?"

I quickly calculated a few responses:

"Nothing."
"What do you mean?"
"She's small."

But honestly, I never intended to say anything. My wife, because this entire process has made her tough as nails, simply said, "She has Trisomy 18." It was clear this woman had no idea what that meant, and she proceeded to tell Erin she was only asking because her daughter looked just like Molly when she was born. At that point the receptionist called me to fill out some paperwork and I didn't return until the cute baby with the earrings - and her mother - had gone off somewhere. She turned out to be perfectly nice. And she was only asking because she thought maybe her daughter and Molly had something in common.

Perhaps I am hyper-sensitive because I am trying to keep it positive?

Or maybe there are actually four things you should absolutely never ask someone.

Sew Buttons, They Don't Stick

2007-03-14T17:04:00.000-04:00

That's another thing my grandfather used to tell me if I ever asked "So?" in response to something that was said by another person.

Miss Molly just returned from visiting the surgeon who put in her g tube. Everything looked good and she had healed nicely, so they went ahead and outfitted her with the "button."

This highly anticipated piece of equipment has a balloon that goes into her abdomen through the hole made during the g tube surgery, and is filled with water. The filling of the balloon prohibits it from being pulled out. If we ever need to remove the button, we use a syringe and remove the water from the balloon and pop it out. When the button is in place it basically lies flush against her skin so there is nothing to catch on car seats, or clothes, or little fingers.

When it's time to eat we connect the extension tube to the button at one end, and the feeding bag at the other. She then eats exactly the same way she has been eating since the g tube surgery, and effectively the same way she has been eating since the ng tube was first put in last October.

Molly was an absolutely perfect baby during the exam and procedure. She was completely still and didn't make a sound (other than occasionally talking a little).

Tomorrow Molly is scheduled to meet her new OT, and we bought a little Tummy Time mat in anticipation of her homework. It was also sort of a reward for being such a good baby for the doctors.

Vesicoureteral Reflux and the Voiding Cystourethrogram

2007-03-13T13:29:00.000-04:00

Doesn't that sound like some twisted Grimm fairy tale? Well it's actually the procedure Molly had this morning, and the condition they were testing for. You can learn more about it here.

It turns out Molly does have some reflux from the bladder. It means the urine is leaving the bladder and some is heading up toward the kidneys. This can cause chronic urinary tract infections (you may recall that was what landed Molly in RWJ two weeks ago, and what prompted this test), and possibly kidney infections. The doctor said on a scale of 1 to 5, Molly's condition is probably a 3.5.

She'll be treated with low-dose antibiotics for up to a year. Then we would have a follow up. In many cases these conditions clear up on their own. Molly's is not terrbily severe, so as long as the antibiotics work there should be very little to worry about.

Tomorrow it's back down to CHoP for the g tube follow up.

Newspaper Article

2007-03-13T12:06:00.000-04:00

A friend sent me this article this morning from a paper named for a city not far from here. If you know me, you know I would not have found this article without the help of said friend (or the subsequent friends who have also told me about it) because I avoid reading this particular newspaper for personal reasons, which I promised never to bring up in this space [in paragraphs one and two of this post).

I have just finished reading this article and I have some thoughts. I do not, however, have time to express them right now. Please check back for a future post where I will share my thoughts. In the meantime, please take a few minutes to read the article. And feel free to share your thoughts if you have time.

Obligatory, Straightforward Molly Update

2007-03-12T09:34:00.000-04:00

Molly has now slept in her own room for five consecutive nights. She actually seems to sleep better in there, too. She wasn't the slightest bit fazed by the early daylight savings change. The rest of us took a bit of a beating though. I am sad to admit that I was even up at 2 am to change the clock ahead. I think my sleeplessness was compounded by the confusion caused when I tried to find something to watch on TV just before 2 am and was only able to find things starting an hour later. Then it dawned on me: the clock and guide on the TV are both smarter than me.

So aside from the fairly regular oral evacuation of her formula, Molly seems to be feeling well and happy. In fact even after any of the aforementioned events she tends to get smiley. I guess this could inadvertently add credit to the adage that babies are not really smiling at their parents, they simply have gas.

I'm sure most of you have seen the latest picture of Molly, but in case you haven't, check it out here on Erin's site. Speaking of Erin's site (as opposed to my site), we're thinking of combining the two sites via a central hub using a .Mac page. It will certainly take more effort to get it organized, but it will be more convenient in the long run. And it will just give us some more flexibility in terms of content. Stay tuned for details on that [By the way, do you like how I write as if millions of people are reading this. Funny right? Like it's going to take some big marketing effort and a gradual migration of data to make sure we don't lose any page views].

This weekend Gavin and Molly went to their cousin's birthday party. In addition to having a bus in front of the house exclaiming that it was fun, it was fun. The kids all spent an hour running, jumping and non-stop moving aboard the Fun Bus and there was a full-on chocolate ice cream cake. If you ask me it doesn't get any better than a self-contained gymnasium that parks in front of your house and comes with babysitters, and a four-inch high pile of chocolate ice cream and those crunchy things.

In other anniversary news, Molly's seven month birthday was Saturday, and Friday was the one-year anniversary of the first post on this site [please hold you applause until the end].

As for the rest of us: Gavin has a cold, which Erin may be contracting as well. This means Molly is likely next (but hopefully not) and I am not far behind. We have a busy week this week with doctor appointments tomorrow and Wednesday. Tomorrow we head to New Brunswick for a bladder thing, and the next day we head to Phila for the follow up on Molly's g tube surgery. We're not sure if they're going to change her from the tube to the highly anticipated button Wednesday, or if this is for a subsequent visit? But we'll know soon enough. And, as always, you guys will be the first to know after the ones who know already.

I Planned on Resigning This Morning

2007-03-07T08:45:00.000-05:00

But it turns out I didn't win the MegaMillions Jackpot.

Plus it actually would have been silly to quit. I mean I enjoy what I do, and it's probably not the best time to give up the medical benefits. Not to mention I could have taken credit for soliciting the huge gift I would have made to the School.

But like I said, I didn't win.

I did spend a fair amount of time yesterday thinking about winning it. C'mon you've done it before. And you should all be sad for me [unless one of you won, in which case forget about me and get to your lawyers office immediately]; because a bunch of you stood to benefit from my "what-ifs".

Get this: I'm only practical because I have to be.

For a few minutes yesterday afternoon, when I had a lump-sum take-home (after taxes and splitting the balance with the person who actually purchased the ticket for me) of roughly $92m, I was driving a Bentley; Ten $2m trusts were set up (some of the beneficiaries don't exist yet, and hardly any of them are my kids); I had built four houses (only two of them were ours); Lville had a new turf football field and a $1m endowed annual fund gift; a couple other charitable gifts were made and large expenses were handled; and then we started living off the conservative return of almost $3m/year without touching the principal.

That's when I realized that after paying my lawyer, investment guy, cleaning person, and landscaper, $3m/year wasn't really all that much money and thus I would have to keep my job.

Or I could downsize my houses; drive an Escalade; make those trusts $1m each; keep grass on the football field; give a couple thousand bucks a year to the annual fund; and live off a much larger return?

Or maybe a combination of the two?

Sure, the best case scenario would be to change very little about your lifestyle and just be comfortable with the fact that you - and a few generations afterwards, if invested properly - would never have to worry about money again. But what are the chances that you could do that? I am fairly certain I would have to start spending like a rapper.

But like I said, I didn't win. Although someone from NJ apparently did.

So back here on planet Earth there is little to report on Miss Molly. She is home resting; wearing one of her hand splints; spitting up occasionally after she eats; and blowing raspberries at her mother at like 4 in the morning. The visiting nurse came the other day and she weighed nine pounds two ounces. Her lungs sounded clear. Yesterday a respiratory therapist came and showed Erin how to hook up Molly's breathing monitor.

We're Back

2007-02-28T21:53:00.000-05:00

Molly is home and in great spirits. She is currently hanging out on the couch watching TV with Mom and Dad. She has assured us she has no desire to go to any hospitals for a while. Erin agrees.

Comments

2007-02-27T09:04:00.000-05:00

I've gotten some questions lately about Comments in this space. Let me explain the process:

When you submit a comment you're given the option of doing so under a name (yours or a made up one, I suppose?), or anonymously (which should negate the need to make up a name). After you submit the comment I get an email telling me you have done so. I then have to make the decision to publish, reject, or moderate your comments. In most cases it's pretty clear to me what comments people want posted and what comments they want kept private. But I am only a recreational mind-reader, so, at times, I presume I could be mistaken. I will never moderate your comments - unless they're offensive - in which case you've probably wandered onto the wrong web space. If I select to publish, it forever becomes part of this travesty of modern technology and will be attached to its corresponding post for all to read.

So here is the deal: If you click the profile link you will find my personal email address. If there is something not for public consumption that you wish to share, please do so using that address. If it's something you're comfortable publicizing, please submit it as a Comment. From this point forward I will publish all Comment submissions.

The fact that people have been asking leads me to believe some of you out there may have something to say. If you have a question, or a suggestion, or advice, please feel free to share. By all means, let's make this interactive. Even I get tired of just listening to myself.

This is Harder Than I Thought

2007-02-26T15:27:00.000-05:00

It's been difficult to avoid the negative comments lately. Particularly with Molly ending up back in the hospital; and a new hospital at that. What's going to be even more difficult - and I should have thought of this sooner - is keeping to my previous years' sacrifices. Remember, I mentioned the altered driving behavior and the disappearing F word? Well those things seem to be related to one another, and with all the driving I have been doing lately it seems that I have more to think about than I ever imagined. But I can do it.

Also, at the end of my previous post it seems I may have suggested we're not happy with the medical care at RWJ. This could not be farther from the truth. They are a tremendous bunch of doctors and nurses and their facility is top-notch. We've just gotten used to the way things happen at CHoP and we began to take for granted the fact that virtually everyone who we came in contact with knew everything there was to know about Molly and her needs. Now we go to another facility and they need to know everything from square one.

It gets very frustrating when you have to answer very basic questions. It's obviously for the patients own good and the medical staff's preparation, but it will never get less annoying when someone asks, "does she have any medical conditions we should know about?". We also tend to forget that we spend every minute specifically dealing with Molly and her needs. These people see hundreds of patients every day. I suppose they're entitled to a few questions.

We did get a compliment from the pediatric ER doc the other night. After going through the Q&A with us and gathering as much intel as possible he shook his head a little and asked "are you health care related? I mean are you physicians or something?" We're not foolish enough to suggest we could be, but it was nice to hear. Erin and I got a laugh out of it later. I said, "You would have to be a nurse and me a doctor. You know all the gritty details, know how to do all the hard stuff, you keep track of her meds and all that. I just come in, ask a bunch of questions, and then leave."

At any rate, what I should have said at the end of that post was that it resembled going to a new tax guy. With a new tax guy you have to start from scratch: How many children? Household income? Charitable contributions? It's always more time-consuming and a little bit frustrating as compared to going to the guy who has been doing your taxes since you were single and renting an apartment for $750/month. And, more than likely, just because the new guy has a shorter waiting list it wouldn't justify making the switch.

I'm Too Old for This

2007-02-25T02:19:00.000-05:00

Why would I be sitting at the kitchen table, with a Miller Lite and a deli bag of roast beef, typing on my wife's new laptop, at 2:20 am? It's certainly not because I just got home from a frat party.

It took Baltimore twelve years to replace the vanishing Colts with the expansion Ravens (and they had to steal them from Cleveland). It took Molly less than 24 hours to end up back in the hospital.

At around 4 pm on Saturday Molly had a relatively high fever. We called the pediatrician who sent us to the ER at Robert Wood in New Brunswick. We arrived there around 5:30.

I don't have the energy to describe the visit in detail, but I will say that it took several hours to collect blood and urine to send out for lab results. We were told the labs would take one to two hours, which would have been great had the samples been taken right when we arrived.

Just after midnight we were told we'd be sent home. There was nothing in the test results that indicated anything too abnormal. Her fever was down; she was calm. I took Gavin out to the car so that we could pull around and wait for Mom and Molly. He promptly fell asleep (after all he had been stuck in an ER pod for six hours). After waiting outside for 30 minutes I decided to scoop Gavin up and head back in to check on the girls. Molly had a temperature even higher than the one that led us there in the first place.

The doctor reversed her decision, and Gavin and I drove home. He is asleep. I am not so much. Who knows what the girls are doing.

Oh yes, and in the spirit of my Lenten sacrifice: It may be wise to stick with one hospital and one set of care-givers, especially if they're as great as those at CHoP. If you decide to switch for some reason, you may be disappointed.

Bears and Colts

2007-02-24T12:39:00.000-05:00

On March 29, 1984, under cover of snow and darkness, Robert Isray, owner of the Baltimore Colts, packed the entire organization into Mayflower trucks and relocated to Indianapolis. On February 23, 2007, minus the snow, Erin and I busted Molly Bear out of the Children's Hospital of Philadelphia and relocated to central New Jersey. In both cases, the move was kept a big secret until the next morning.

Around dinner time last night Erin was informed that Molly would be discharged after she had her evening meds and her 6 pm feed. So I arrived around 7:30, made two trips to the car with all the stuff we accumulated over nearly three weeks there, and by 8:30 we were all on our way home.

Molly had a good night sleep last night, in her own bed. Same goes for everyone else in the house (well, except Gavin because he slept at Grandma and Grandpa's).

She brought some oxygen home with her, which we're only going to use as necessary. This, of course, requires another monitor and some wires. So the home care company delivered two huge oxygen tanks and they will deliver this machine to monitor her breathing. We'll have a regular hospital room set up here in no time.

Molly is also on a whole bunch of medication. I am not sure what they all do, but there are five of them. I am quite certain I have never picked up five prescriptions from Walgreens before.

More to come. Right now we're just all enjoying being home.

A Little Superstitious

2007-02-23T12:04:00.000-05:00

Anyone who knows me knows that I am slightly superstitious. I have been this way my whole life. It's another one of those things I could control, but choose not to. What none of you know is that just now is the first time I have ever written that word. I even had to look it up to make sure I spelled it right.

At any rate, because I am slightly superstitious, I have been hesitating to post an update.

So there is this baby I know. She has apparently been doing well the last couple days. I haven't seen her myself, but this friend has seen her a lot and from what she tells me the little girl is doing really well. The hypothetical consensus is that this little girl might be discharged tomorrow morning. This would be great for her parents, so let's keep our fingers crossed. I mean hypothetically...for this little girl I know.

On a personal note [you know, since everything above is hypothetical and about someone else], I gave up making negative comments for Lent. Many of you know that I have this thing about coming up with things to give up for Lent that might make me a better person. To me, giving up cheese, while certainly sacrificial, does not do anything for me except keep me from eating cheese for six weeks. This is not to take anything away from those who choose to give up cheese, it's just not for me. So, for example, last year I gave up aggressive driving/yelling at other cars, etc. It has changed the way I behave in an automobile, even now a year later. A couple of years ago I gave up the F word. Granted I didn't say it often, but it is now virtually eliminated from my vocabulary (with the exception of about a four hour window every Sunday, and usually one or two Monday nights, from September to January).

This year I am giving up making negative comments. This will be even more difficult than last year. And I am actually going to need some help. In fact, right now I am going back through everything I have written so far and trying to ensure there are none there. Where you can help is by pointing them out if you find them (not just now but for the next six weeks). I am not sure I will even recognize them. But I must warn you: there is a difference between negative and cynical (look it up), and there is a difference between negative and sarcastic. If you're going to call me on it please make sure it's not one of the other two things. For the record, I would sooner give up exhaling than cynicism or sarcasm.

Maybe I should have given up being superstitious?

She Should Be Home Already

2007-02-20T15:14:00.000-05:00

Molly had a really good weekend. She was back to full strength, full volume feeds for the better part of Saturday and all day Sunday. She was being weaned off oxygen, and was comfortably working down to none. On Monday morning it seemed that the most likely scenario was that she would be going home that afternoon, and taking some oxygen with her.

Then she spit up.

A lot.

And her belly got really big and hard as a rock.

So I left the hospital knowing she would have to stay another day. But I didn't realize they had taken her from full feeds to IV fluids only. They also took her for a procedure to check on her colon and intestines, to find out what was going on in that big, solid belly. All of this made for a very trying day for the Bear and her mother. And getting all worked up makes it more difficult to breathe, and thus unlikely they would try weaning her from oxygen. In fact, they gave her a bit more to keep her comfortable.

You see how quickly things spiral out of control?

Ultimately she had a pretty good night last night and has been doing well today. Unfortunately, as of this afternoon, she is still on IV fluids only. The build-up from there to full strength/full volume feeds takes a day and a half. So if all goes well we would be looking at a Thursday discharge.

But we know better.

The good news is that she is feeling well and is in good spirits.

Uneventful

2007-02-17T21:26:00.000-05:00

Sadly, and miraculously, the class this morning yielded very little material.

Erin and I decided yesterday to switch it up and I ended up going home for the night. I came back to CHoP early this morning in time for the class. Erin thought it would be a good idea for both of us to go. She says it's so she feels more comfortable with the information, and since she is a visual learner she'll understand it better with first-hand experience. I think it's because she was afraid I'd come back from the class and tell her that she could only flush the tube using her left hand and that it would be more effective if she did it wearing a wool hat. How could she argue if she wasn't there?

But what really happened was pretty status quo. It was basically like a CPR class. There was a realistic-looking toddler dummy with a g tube in its stomach. The nurse showed us how to secure it; then she made us do it; then she made us repeat everything she told us about cleaning and caring for the stoma, which is apparently Greek for mouth, "like the mouth of the stomach." ["Scholars maintain that the translation was lost hundreds of years ago."] I half expected to get a sticker at the end of it. Instead the nurse wished us luck and then told us she needed to use the ladies room.

Molly had a great day today. I'll be amazed if she sleeps all night since she has been sleeping most of the day. Keeping my fingers crossed. She had one spell where she got really mad and seemed generally uncomfortable, but aside from that she hasn't even really made any noise. She is on split feeds (half formula/half Pedialyte) at full volume and they are going to keep her on that plan for the next day or so. She seems satisfied with that. She has not gotten any pain medication since 7 am. Tomorrow morning general surgery will come by to change the dressing on her incision. Can't complain.

Ironically, I am exhausted from doing nothing all day. I like to think I am going to bed soon, but there are factors that may prohibit this from happening. Be on the lookout for a future post outlining these factors.

Back in the Room and Resting

2007-02-16T12:10:00.000-05:00

Molly had a great night of sleep last night and was taken from the room this morning while she was still sleeping. They very briefly wheeled her into a pre-op room where she woke up momentarily and then fell back to sleep. I think she was too tired to realize what was going on and, thus, was unable to fabricate a fever, cough or sneeze, or spit up. Bottom line: they got Molly in for surgery right on schedule.

By 8:45 the doctor had come out to tell us the procedure went smoothly and there were no surprises. A few minutes later we were up in the recovery area with Molly. We were surprised at how large the tube is but since it will later be replaced by a small button that sits flush against the skin, it's not a big deal. She was a little groggy from the meds, but she opened her eyes when she heard our voices.

Now we're back in the room [the shared room we've been in for the last week] and Molly Bear is sleeping. She'll get pain medication as necessary, but all in all she is doing really well.

I'll post another update later. If not today, then certainly after I take the G Tube class tomorrow morning. I am spending the night here tonight and the class is at 9 am tomorrow. So I'll be solo. I will be on my best behavior for class, but you'd have to be crazy to think I am getting through that session without some valuable fodder for a future post.

Surgery: Take, I Don't Know, Five?

2007-02-15T22:35:00.000-05:00

Molly is on the schedule for 7:30 tomorrow morning.

I don't want to jinx it.

There was a good chance the surgery was going to happen this afternoon, but then Molly went ahead and gave herself a fever. So the doctors postponed it. By the time I got down there she was smiling and spitting bubbles. Yeah, pretty much laughing.

Her temperature went back down to normal at around 6 pm and by 7 pm she was on the schedule for tomorrow morning.

Erin and I had our romantic post-Valentine's Day dinner in the cafeteria. We had talked about going to PF Chang's [we planned to go for my birthday in October and still haven't been] but this only cost us 26 cents; well, two vouchers and 26 cents.

I am going to take a nap and then head back down there.

This is Interesting

2007-02-14T21:56:00.000-05:00

So I made a joke in my last post about getting my information via my wife's web site and suggested perhaps there was someone out there who could fill me in on how my daughter was doing. Imagine my surprise when a call comes in from a CHoP number and someone other than my wife is on the other end. Actually that's not that weird, but what follows is. Here is my best attempt at a transcript of the phone call:

"This is Dr. Yang from the anesthesiology department at Children's Hospital."

"Hello."

"I have a few questions to ask you about your daughter. You know she is here in the hospital?And we're trying to squeeze her in for surgery tomorrow."

"Ok well you are aware that my wife is actually in the room with my daughter and while I am happy to answer any questions you have it may be easier from a logistical point-of-view if you just go and talk to her."

"Well I went to the room and no one was there. And we need a consent in case we can get her on the schedule tomorrow."

"Blah. Blah. Blah."

"Blah. Blah. Blah."

"Ok. Thank you. Goodbye."

So half way through I realized the call wasn't that funny or weird and I changed my plan. But the point is that someone from the hospital called to get consent from me when Erin is already down there. It seems silly.

And it just goes to show you that we're often as in the dark as anyone because after I talked to the doctor I called Erin and, although she knew there was a consult planned, she had no idea they were talking about tomorrow.

What I got from the doctor was that Molly is doing pretty well. In fact, according to Dr. Yang's boss, she is "the healthiest she's been in a long time." So they want to get her in for surgery because if they don't she is going to be sent home.

So let's hope she gets in tomorrow afternoon [Dr. Yang gave me a 40% chance it'll happen tomorrow] and then has a speedy recovery.

Not the Spider, the City.

2007-02-14T10:16:00.000-05:00

Charlotte. This wouldn't happen if we lived in Charlotte. Don't get me wrong, I don't really know anything about Charlotte. But I do know it's the farthest south I would consider moving, and there are probably very few ice storms there.

This weather is awful.

Gavin and I are currently hanging out in our PJs, which is cool, but we were planning to go see Mom and Molly for Valentine's Day and with the current state of meteorology and the forecast for the rest of the day, it's not looking good. I was supposed to relieve Erin for the night and, if I don't get down there at all, that's pretty much impossible. Then tomorrow I have to go to NYC for an afternoon meeting and that makes it unlikely I can get down there then. So poor Erin will have to spend five straight nights there. Plus she won't get her Valentine's Day gift until Friday [and those of you who know what it is know how excited I am to give it to her].

So it may not seem like it, but all these concerns are completely selfish. Ultimately what's going to happen is I am going to have to stay down at the hospital all weekend (which will likely include Monday since I am off for President's Day and three nights still doesn't compare to five).

Hey while I am thinking of it, if any of you have any insight into when Molly might be sent home please let me know. That would be great.

As for medical updates, as far as I know Molly is doing ok. Yesterday they lowered her oxygen levels a bit and she was still breathing well. Hopefully they lower it some more soon, and ultimately take her off completely. There was also a plan to put Molly back on some formula (in conjunction with the Pedialyte). All signs of improvement. Of course, I'll have to talk to Erin to find out if any of this information is still accurate. Or maybe she'll post something on the CaringBridge site. I am not averse to getting my information that way; it is the technology era after all.

Kids Say the Darndest Things

2007-02-12T11:10:00.000-05:00

By now you all probably know that Gavin frequently says things that make me laugh out loud, but I am not so used to something that does the complete opposite. Here are the two ends of the spectrum, both events occuring in the last sixteen hours:

Laugh out loud:
I walked in to Grandma and Grandpa's house after being at the hospital for two days. After hugging me and telling me how happy he is to see me, Gavin starts to take my hat off my head. I assured him I did not want to take my hat off (I'd been at the hospital for two days, remember, and I need a haircut pretty badly). My grandmother always told me to take my hat off in a building. I usually obeyed, but most times reluctantly. We've decided to instill this habit in Gavin at a very young age, and he is very good about it. Recently he tried to get me to take off my hat at home and I told him it was ok to wear your hat in your own house. So as I am begging him not to take off my hat last night he reminds me, "Daddy it's rude to wear your hat in someone else's house." How can you argue with that.

The complete opposite:
Grandma and Grandpa took Gavin to see Charlotte's Web yesterday. On the way to school this morning he was telling me all about it. I don't recall this, but it seems the spider dies at the end. I asked him if that made him sad and he said, "no, because I was just watching the movie. But it made the pig sad because he was the spider's friend." I asked if he knew why the spider died and he said "because I think she was just getting a little old. I don't have to worry because I am just starting to grow big."

In hindsight that may have been a good time to address the fact that sometimes spiders die from things other than "just getting a little old." Instead I said nothing.

A Shared Room

2007-02-12T08:11:00.000-05:00

Molly spent her six month birthday at CHoP, much like she spent her three month birthday there. Except back then she had a private room. I spent the weekend down there with her and I was surprised by the fact that it really wasn't as bad as I thought it would be. First of all we had the far bed in the room, so by default we get more space and additional privacy (no one has to walk through our area to get to the other person in the room). Second of all, the parents of the other baby were only there for a total of six hours during the 48 hours I was there.

Molly slept a lot during the day, so I caught up on movies. At night, she was up a lot, but the nurses were so on top of things that by the time I heard her cry and looked up, someone was already there. The biggest problem about the shared room is that the babies are never on the same schedule. So when Molly was up the other was sleeping. When Molly was sleeping the other was up. When one monitor was going off it was inevitably while the other baby - and by extension her dad - was sleeping.

From a medical perspective there is very little to report. Molly continues to be congested and therefore occasionally spits up after eating. They have put her on an additional acid reflux medication (this one deals with the reflux part, her other deals with the acid part), but since she spit up this morning I guess that is not going to totally solve the problem. She is still getting some oxygen, but it is just to keep her levels up without working too hard. Erin tells me she had to have a new IV put in last night, so I am sure she is a little agitated today after getting yet another needle stuck in her.

No word on her release date, or a date for surgery. You'll be the first to know - after the others.

Journalistic Integrity

2007-02-09T09:54:00.000-05:00

Don't get me wrong this space is filled with contradiction and creative exaggeration, but it's been brought to my attention that there are some blatant inaccuracies in my recent posts, and additionally some confusing medical information. For the sake of journalistic integrity I will attempt to clear these up through the following addendums:

1. The flood. As it turns out the flood only effected a couple offices on this floor. When my colleague called to ask what I needed from my office it was purely precautionary. There were offices actively flooding, and there was an inch of water on the floor in certain spots. Neither of these things apply to me. In fact, as I survey my office for the first time since the incident, with the exception of a variety of personal items missing, there is no indication of any tpe of disaster.

2. Pneumonia. Molly officially does NOT have pneumonia. The x-ray from Princeton showed a spot that the technician assumed to be pneumonia - based on the diagnosis from our cardiologist/pediatrician. When we got to CHoP and the doctors compared her x-rays with those taken during her last stay, it seemed there was very little difference. When they took a new set of x-rays they confirmed that there was no change since her stay just after heart surgery.

3. The spot presumed to be pneumonia. This spot is actually a small section of her left lung, which partially collapsed after heart surgery. In some cases they spring back. In her case it likely will not. We knew about the collapsed lung all along but it appears I never mentioned it.

4. How sick is she currently? Molly has a lower respiratory infection, which is viral. It could be any number of actual viruses, and we will probably find out exactly which one soon. For now all that is really important to know is that since it is viral it is not likely to respond to any medication. It just needs to run its course. She is breathing comfortably with the help of some oxygen. She is eating normally. She doesn't seem particularly uncomfortable.

Last night they moved Molly to a shared room. This is the first time since her immediate recovery from surgery that she has been in a room that was not private. Tonight I am going to stay down there and I would be lying if I said I was the slightest bit happy about being in a shared room. Erin says it's not so bad, but I don't really believe her.

Back at CHoP

2007-02-07T13:02:00.000-05:00

So we're back down at Children's Hospital now and Molly did not have a very good night. It seems she was having some trouble breathing, even with the help of the oxygen, and required some additional assistance. They put her in a little tent that acts like a humidifier, and traps all the oxygen in so she can use it more effectively. Unfortunately it's like sitting in a greenhouse so it's fairly uncomfortable for her as far as body temperature. They removed the tent a little while ago and she is breathing more or less entirely on her own. She seems a bit more comfortable as well.

The doctors mentioned something fairly interesting this morning. Apparently the fluid in the left lung that they detected on the x-ray may well have been the partially collapsed lung she has had all along. It seems odd that the cardiologist would have heard what she thought to be fluid, when no one else had, and actually be wrong. But that remains a possibility. The doctors here are monitoring the situation. If it';s not pneumonia, and just the collapsed lung, then they'll have to keep working to find the actual cause of this long illness.

She is currently on fluid only and no formula. There is some concern that the milk-based formula can add to her congestion, and there is also a concern about aspiration since she is so congested and tends to spit up more feeds as a result. Part of the discomfort she is experiencing right now may well be hunger.

That's the latest update from down here. I'll post again when I have some more information.

When It Rains, It Pours

2007-02-06T23:42:00.000-05:00

I've used that before, you may recall, when our refrigerator broke and Molly was at CHoP recovering from heart surgery. It's cliche, yes. It's also offensively accurate.

Today I fully intended to write a post about Molly's trip to the cardiologist. Her appointment was at 9:15, so I figured by 11 am I could post something about something.

At 4:04 pm I got a call from a friend at work asking me what I needed from my office. She was slightly frantic.

"I got all the pictures from the bookshelf, what else do you need?" she asked.

"Umm, excuse me?"

"From your office. What do you need from your office?"

I was thinking, have I been fired?

Apparently the first thing she said was that there was a flood. My office was one of many currently flooding. Cell phones being as reliable as they are, I missed the key to the whole conversation. Fortunately I have not been fired. Unfortunately there is an inch of water on my floor. But why wasn't I in the office when it flooded, you may ask?

When the cardiologist listened to Molly's lungs this morning she heard some fluid in the left lung. She's been sick for nearly six weeks now, but every time she was examined her lungs were clear. This time not so much. Since we were in Princeton, the doctor recommended we go to Princeton Hospital (UMCP) for an X-ray. Before we headed out to the hospital she did another ecko and let us know that the heart looked pretty normal, she just wanted to check on the lungs. We were fast-tracked at Princeton and ended up back at the cardiologists office by a little after 1 pm. The x-ray confirmed a little pneumonia in Molly's left lung and the cardiologist told us she had called ahead to reserve a bed for her at CHoP.

So by 3 pm we were settled into the room right next door to the last room Molly inhabited before she left in November. Weird actually. It's literally next door. The room she is in shares a bathroom with the room she was in last time.

Bottom line is that she has pneumonia and she'll require some in-house treatment for a few days at least. We're not sure exactly what the course of action will be; we'll know more after all the tests are done. The doctors seemed generally positive - well one of them did, the other may have actually been a robot.

It's nearly midnight and I am wondering if any of this even makes sense. I'm sorry if it doesn't, but there's nothing much I can do about it. I am going to bed now.

On a much more bizarre note, someone in the elevator was saturated in Southern Comfort and now all I can smell is SoCo. I nearly had to pull over on 95 because it kept making me gag. All you kids out there: drinking to the point of near-blind intoxication will haunt you not only for the following 36 hours, but periodically for the rest of your life.

BLOG

2007-02-05T16:57:00.000-05:00

The Washington Post's Style Invitational asked readers to take any word from the dictionary, alter it by adding, subtracting, or changing one letter, and supply a new definition. Here are a few of this year's winners - ones that are relevant to me and/or this space:

Sarchasm (n): The gulf between the author of sarcastic wit and the person who doesn't get it.

Inoculatte (v): To take coffee intravenously when you are running late.

Karmageddon (n): its like, when everybody is sending off all these really bad vibes, right? And then, like, the Earth explodes and it's like, a serious bummer.

Decafalon (n.): The grueling event of getting through the day consuming only things that are good for you.

I found the email from which these were taken to be highly amusing, and timely. If I recall it came on a particularly reflective day. I thought about trying to come up with a catchy name for a BLOG in this same manner. But apparently the word BLOG stems from "web log" and thus already basically is one of these words. But that wasn't good enough for me, so here I go [with my own artistic leniancies; I'm not trying to win anything from the Post] in no particular order:

Blaahhg (n): an especially tiresome web log.

Bulletin bored (n): A place to read notices that make one weary and restless through lack of interest.

Diaryhea (n): a daily record with an excessive flow of personal activities, refelctions, or feelings.

And my personal favorite:

Jourinal (n): a record of experiences, ideas, or reflections intended for private use yet stored in a public recepticle.

Anyway that was hardly the point of this post - although I must admit it was kind of fun. When I remember how I even got to that, I will post something about it. But I must warn you, I started this post nearly two months ago and it's just now gotten this far.

Karma Rears Its Congested Chest

2007-01-23T09:19:00.000-05:00

Some people like to drive around looking at Christmas lights; some people like to visit antique stores; some people travel around collecting stickers from every town they visit. We go to hospitals. And they give us bracelets.

Because my little girl was born with the same sick sense of humor as her old man, we have postponed a third scheduled surgery. Molly's been sick for a few weeks, but she was getting better. We told them this over the phone yesterday. They scheduled us for first thing this morning and told us we would be a go for surgery unless she was really sick. So we got up this morning and drove down there at 4:30. Wouldn't you know it, she was more sick this morning than she has been for a week.

Molly was evaluated by a nurse, then by the head of cardiac anesthesiology, then by the surgeon. Everyone - including Molly's parents - agreed that this entirely elective surgery should wait until Molly is healthier. They assured us we could get in for surgery on 48 hours notice, and we should call when she is well so we can schedule it as soon as possible. In the meantime we're going to go to the pediatrician and see about some antibiotics to kick this thing.

Guess who has only sneezed once since we left the hospital? And I am not absolutely certain that wasn't actually a giggle.

Surgery Tomorrow

2007-01-22T20:53:00.000-05:00

As of right now surgery is scheduled for tomorrow. We have to be there at 5:45 am. The doctor said that as long as she isn't too congested and uncomfortable they'll go through with it. So we're heading down there assuming it'll happen. I'll post something as soon as possible.

Lockdown

2007-01-21T11:09:00.000-05:00

Just the other day I was talking to my buddy, Charlie, about how badly I could use a day off. An entire day of nothing. See when Charlie and I were younger we used to designate certain days for Lockdown. On one of these days there were no plans; no visitors; comfy clothes all day; a couch and a TV. If Lockdown can fall on one of those weekends I referenced in my last post, all the better. But if not, then DVDs and Seinfeld reruns can certainly pass the time. [Who am I kidding, when we did this they were VHS and Seinfeld was only on Must See Thursdays] It's much harder to pull this off as I get older and my level of responsibility increases. But it's certainly possible to have a modified version of Lockdown.

I was explaining this to some co-workers shortly after that discussion and they all seemed to think it was impossible to do this. Either there were too many things that absolutely have to get done over the weekend, or there are individuals who are incapable of staying inside and not doing anything for an entire day. I tried to describe how they were looking at it from the wrong point-of-view. You see Lockdown is something. Waking up and moving to the couch to watch TV is the plan. These are your priorities for the day. I guess you either get it or you don't. Regardless, I am a huge fan. So Erin and I decided that yesterday (Saturday) would be one of those days. We had no plans so we decided to make Modified Lockdown the order of the day. Going to sleep Friday night, I was really looking forward to it.

Can you guess how this story ends?

At 7 am yesterday morning we were in the car; Gavin still half asleep and in his pajamas, Molly unhappy because she is hungry. When Erin went to feed Molly at 6 am, her tube was clogged. This has happened before, usually through some effort the clog subsides and all is well. In the rare case that we're unable to unclog the tube, we simply replace the tube with a new one. In this particular instance the clog would not subside, and there were no extra tubes. Since you can't just buy these at Walgreens, we called the answering service for our pediatrician. When the doctor called back she told us to go to the nearest hospital and go to the ER. She said she'd be shocked if the hospital didn't have a replacemnet tube. We should have realized at that point what we were in for.

We arrived at the University Medical Center at Princeton and the ER was virtually empty. The good news was there was no wait to be brought back to a bed. The bad news was once we got to the bed all we did was wait. Now keep in mind we love UMCP. We chose to deliver Molly there even though everyone was encouraging us to go to a hospital that specialized in delivering sick babies. We couldn't have been happier with our experience there for either of our children. To say the least, they didn't have the tube we needed.

The first doctor that came in to see us was on his way home. He checked her out; looked for some writing on the tube; went home. The doctor that replaced him looked a little more awake. He couldn't believe it when we told him all he needed to do was get us a tube and we would put it in.

"Hey Bill, they don't need anyone from neonatal, they can put the tube in themselves."

Medical professionals were astounded.

We thought we'd end up teaching a class.

Ultimately they got a nurse from neonatal down and she put the tube in - the wrong tube. We ended up having to stay in the ER because the only way we could feed Molly was with their apparatus (the valve of their tube was too narrow for the dispensing cone on Molly's feeding bag; so it wasn't actually the wrong tube, it just wasn't perfect).

The whole time we're there I am on the phone with the home care company to see if we can get a new tube delivered, or if they can direct me to a place where I can buy one. None of the above.
So we leave Princeton planning to drive to Robert Wood in New Brunswick. We figure if RWJ can't help, St. Peter's is right around the corner. And if that doesn't work then we'll take a leisurely drive down to CHoP. Secretly I was hoping to visit all the hospitals Molly has been to in one day - a Lockdown day no less!

Instead of going to New Brunswick we decided to drive to Clark, because it's a good 20 minutes further and they won't charge us another however much it is to visit two ERs in one day. The woman at the home care company - Sharon, the only person in the whole building because it's a Saturday - went back into the warehouse and tracked down the last size 8 they had (size 8 being the size they told us they used at Princeton; we should have taken into consideration this would be a different brand). When we arrived we quickly realized that an 8 was roughly the size of the coaxial wire for cable television, and in no way suited for our daughters nasal passage. We tried it anyway. Fortunately, there was also one size 6 left. Sharon went and found the size 6, the perfect fit, and we put it in on the cafeteria table.

By the time we got home it was about 2 pm. Gavin was at Grandma and Grandpa's, and Molly was sound asleep from a stressful morning. I decided to take advantage of the quiet and clean up a little and then relax. I settled in on the couch at around 2:45 and spent a solid fifteen minutes resting. Then it was off to the grocery store.

Gotta love a good Lockdown.

Glorious Weekend

2007-01-15T09:36:00.000-05:00

To me there are a few weekends of the year that just can't be beat: the first weekend of the NCAA hoops tourney; the Masters/US Open weekends; the Ryder Cup (it's every other year, and every four years it's in Europe so it comes on TV at like 6 am); and the first two weekends of the NFL Playoffs.

Last weekend wasn't that great because the Giants played and that always stresses me out. This weekend, however, was perfect. Just relaxing and watching football; little emotional involvement. All the games were good, and I would have only liked to see the outcome of one change (I was pulling for Seattle). And, let's face it, to me, an Eagles loss is a close second to a Giants win. I mean it's almost just as good. Don't get me wrong anyone beating the Eagles makes me happy, but I am really rooting for the Saints. So it was double-good.

So in addition to all this great football, my mom came up for the weekend. It's always nice to have her around. She was only here for a couple days, but at least she got here. When my mom comes up here it's like Christmas: yes, I mean we always get stuff, but it's also like having a whole family around. I don't know how she does it, but she actually holds Molly for like 12 hours at a time. When the whole family is around for a holiday like Christmas, everyone passes Molly around to the point where Erin and I have no worries about where she is or what she needs. When my mom is here she somehow accomplishes that feat on her own.

As for Molly, she is still not feeling well. She is very congested - though improving. She has not been tolerating feeds well, but she is still getting a lot of food in her. When the nurse came last week Molly weighed 8.7. Up two ounces from the previous visit, despite the stomach issues. She went back to the orthopedic doctor this morning to see how she is progressing with her hips. we can move from three diapers down to two, which is nice. He said she is still a little stiff, but seems to be improving. There were no x-rays, so nothing is certain. She was also fitted for purple, neoprene gloves. The purpose of these gloves is to keep her little finger spread out a little more, and to keep her from folding her thumbs in. Hopefully this will help her skeletal and muscular development.

We're still scheduled for surgery next Tuesday. If Molly doesn't shake her cold it's not likely to happen.

A Pattern and a Warning

2007-01-08T08:37:00.000-05:00

So it's now one day before surgery and Miss Molly has herself a cold. As a result, they're going to postpone her surgery. You may recall, this exact same thing happened with her heart surgery. I am starting to think Molly Bear has an aversion to surgery.

I'll keep you posted on a reschedule date. I think the surgeon only does them on Tuesday, so it'll be some Tuesday not too long from now.

As of this morning we'll start getting Molly better; she is going to see Dr. Paul in a couple hours.

As for me, well I am all kinds of grouchy: it's Monday morning; it's raining; the Giants lost to the [fill in obscene descriptor of your choice] Eagles last night; and I have a physical this afternoon that prohibits me from eating and/or drinking anything (which includes coffee) beforehand!

Happy 2007

2007-01-02T10:47:00.000-05:00

It's been a very hectic couple of weeks in the Brown house. We had a great Christmas with the family and a relaxing new year's eve with the sisters. Between the Hilton Head Browns and the Wilberts up from Houston, we had plenty of people to spend time with - and lots of additional babysitters.

The day after Christmas Molly's nurse came over to check on her. She weighed 8 pounds 2 ounces that day. Then a couple days later she went in for her four month physical and she had ganied another half ounce. Molly seems to be steadily gaining weight as we continue to gradually increase her intake of formula.

Next week is the stomach surgery. We'll keep everyone posted.

Hope you all had a nice holiday and we wish you the best for a happy and healthy 2007.

"Have You Updated the Blog Yet?"

2006-12-21T09:21:00.000-05:00

I feel like I find myself apologizing more and more these days for falling behind on posts. Sometimes it just seems like I don't have anything significant to put up here, and rather than a boring three sentence update I just say nothing. Maybe I'll start making a priority of updating at least once every three days, even if not to say much at all. Or maybe I won't. We'll see what happens.

We went back to CHoP yesterday to have a pre-admission examination for Molly's surgery on January 9. At that time she will be getting a g tube, to replace the ng tube she currently has. Our understanding is that the only difference will be the comfort and convenience. The tube she currently has goes through her nose and down her throat. I am sure you can all imagine the discomfort that creates. She is often congested and frequently sneezes just from the tube being where it is. There is also a high likelihood that she could pull the g tube out through her nose - as she has done a couple times already - which requires us to re-insert the tube [by "us" I mean Erin; I just hold Molly down]. This tube will be tucked in her clothes and will relieve both of those issues.

The surgery itself is supposedly routine [as routine as any surgical procedure performed on a four month old, seven and one half pound baby can be] and should only have a recovery time of a few days. If all goes well we will be in and out of the hospital in the span of a couple days. However, if you recall, the heart surgery was supposed to be in and out as well, and we spent three weeks there. We'll hope for a quick discharge, but defer to what's best for her health, obviously.

I have some other posts brewing in my head. Some directly contradict things I have said already. It's a delicate balance. Plus, with millions of readers out there I would hate to post anything less than stellar.

One Third Old

2006-12-13T08:28:00.000-05:00

Molly Bear turned four months old last Sunday. To celebrate, the Giants won for the first time in thirty-five days. It was a happy day in the Brown house.

And we got our Christmas tree, too. It's too skinny, but we like it anyway. Almost any tree is nice once you get all your own lights and decorations on it.

I'm not sure exactly how much Molly weighs right now [amended at 4:20 pm after the nurse visited the house: Molly weighs 7 lbs 9 ozs], but I'd guess she is creeping close to eight pounds. It's good that we're not sure since the place where she typically gets weighed is the doctor. That means we haven't recently been to the doctor.

We're still playing with her formula dosage and frequency. It seems every time we get her on a good schedule with a max quantity she starts to spit up her feeds. We've backed her down some and have started working back to maximum intake.

For the past couple weeks we've all been fighting colds. Molly and Gavin seem to have it the worst. Molly has been congested for weeks. It certainly makes it more difficult for her to breathe, but she doesn't seem too terribly uncomfortable; and even with the congestion her breathing is a million times better than before the surgery. And Gavin has this wretched cough that he can't shake. Poor kids are on all kinds of cold medications.

My Grandfather Once Told Me...

2006-12-07T11:02:00.000-05:00

This space is in no way at risk of becoming a political forum or a platform for preaching ethics. I will never push my opinions on another as relates to politics, religion, morality, etc. I will push my opinions on people as relates to sports, specifically my beloved Giants – who absolutely stink right now.

I am Catholic. And Republican. And a cynic. I fly an American flag outside my house EVERY day and support our troops in every location, foreign and domestic. I drink too much coffee. Sometimes being organized takes over me. All of these things are true. None of them are out of my control.

My Grandfather told me a lot of things. As is the case with most kids, some you recall and some you don’t. There is one particular thing he said to me about ten years ago that still resonates today. Actually it resonates more.

When I was a sophomore in college I was skeptical of authority. I questioned everything. People, as a species, annoyed me. I’d say 50% of the statements I made above were false in 1996. In fact, in 1996, I doubt I would have made those statements because it would have meant I had to classify my beliefs, which were all over the place. At the time I was not going to church. Ever. Consciously, not just because I couldn’t find the time. I remember my grandfather would constantly ask me if I was going and I would always tell him no. Finally one day he asked me, “Don’t you believe in God?” I replied, without hesitating, “I don’t think so.”

He believed in God. He went to church. He practiced Catholicism. He did not question my response. He did not get upset. He simply asked, “Well then what do you believe in? You’ve gotta believe in something.”

At the time I shrugged it off. Whatever. I believed in sleeping late, skipping class to watch TV, not voting because - well - what difference can my vote possibly make? Marriage was overrated. The drinking age was too high. The death penalty was unfair. I was 20 years old and a sophomore at a liberal arts college in central Connecticut. I would have been better off if I believed in anything.

I don’t claim to have it all figured out now. Not even a little bit. But I definitely agree: You’ve gotta believe in something.

Our family has been faced with some difficult challenges this year. We’ve had to make some unfair decisions. I can’t speak entirely for Erin when I say this, but I can speak for myself without a doubt: none of the decisions we made were a result of me being Christian, conservative, sarcastic, patriotic, addictive, or obsessive. I had to remove myself from all of these things that define who I am, and make the decision that was best for our family.

We had to ignore what other people would think. We had to block out what other people believe. We had to figure things out for ourselves.

So what do I believe in?

Whether or not I believe in God is not relevant here, nor will it ever be relevant in this space. But I can tell you for one I believe in honesty; being honest with yourself.

That wasn’t really a big epiphany.

And for another, I believe in people. Anyone who knows me is going to find that completely shocking. But it’s true. This experience has made me believe that people, in general, are good.

Or at the very least, they tend to be honest.

When Molly was diagnosed in March, the very first decision we had to make was whether or not to continue the pregnancy. I have talked about this before so it shouldn’t be news to most of you, but this was not a decision we made immediately. If you go back to those things I said about myself earlier, a couple of them would indicate that the decision should have been obvious. Here’s a secret – my mantra - No matter what you think you'll do in a given situation, you have no idea what you'll actually do until you have no choice but the make the decision.

Admittedly, at first, a great deal of how we weighed this decision had to do with other people. What will people think of us if we decide to end the pregnancy? What will people say if we continue? Will we be able to deal with people asking about the pregnancy as it progresses, especially if they have no idea of the circumstances?

I must say, thinking back to those days, it seems ridiculous that we put any weight on those things. First of all, factoring other people’s opinions into our decision would have been being less than honest with ourselves. Secondly, it would have been selling people short.

People, as it turns out, aren’t so bad after all. And lucky for us, we know some of the greatest people out there. I believe that.

You Might Live in a Hospital If - Your Daughter Has a Reputation

2006-12-06T09:14:00.000-05:00

When you’re the father of a daughter who “has a reputation,” the first thing you’re supposed to do is buy a shotgun. Luckily it’s not that kind of reputation.

When you’re in the hospital you have very little privacy, and the standard recognition of night and day do not apply. They do their best. You get a curtain. But there is no knocking; “Is this a good time” is rarely uttered; and when it is “I’ll come back later” is never the response you hear.

Except for Miss Molly.

Now don’t get me wrong, we still had to live by the same rules as everyone else, but as time wore on we started to notice some changes in the routine. It appears you just have to be vocal; express your concerns. And in this case Molly was the first to do so. Here is a quick list of some of the things we noticed:

Every hour the nurse is supposed to measure and record the patient’s vital signs. Molly was not a big fan of this. So little did she enjoy this process that most hours they would leave the blood pressure line blank, because Molly wouldn’t calm down long enough to get an accurate reading. Eventually, we noticed that nurses were actually sending their aids in to take the vitals.

IV teams respond as needed and go all over the hospital changing IV needles, etc. Naturally no one likes being poked and prodded. Especially when it happens as often as little Molly had to deal with it. She would always let the IV team know she would rather they not be doing what they were doing. After a couple days we noticed that the IV team would arrive much sooner after being called, and when they got there they would ask us questions about preferences and where veins are best found. After a few more days we realized teams were responding without being called, just to check in, and saying things like, “oh we know all about Molly Brown.”

Even though she was hooked up to a number of machines, we were able to take Molly out of her bed and hold her fairly often. Since she likes to snuggle so much, this often calmed her down. Doctors round once a day, on their schedule. At first we used to leave the room and give them their time to meet. As time passed we would stay in the room, but stand clear of them. Then eventually, it seemed they were making rounds more on our schedule. They’d meet as a group outside the room and then one would come in to check Molly out. And if Erin was holding her the doctor would say, “no don’t put her down. I’ll check her right where she is.”

You know what a Boppy is? Well it says right on the tag “NOT FOR SLEEPING.” Certainly a hospital is not going to allow a baby to sleep in something that clearly says it shouldn’t be used that way, right? Not so much. We let Molly sleep in her Boppy at home, and we told the nurse that one of the first nights after surgery. That nurse decided to bend the rules a bit for the sake of comfort. The next day we gradually worked it into a new nurse’s head that the Boppy was a good way to settle her down. By the third day it was on her chart that she should be in the Boppy more often than not. She still sleeps in that very same Boppy at home.

It seems you just need to yell a little bit.

Friday Night Carbo Load

2006-12-03T11:53:00.000-05:00

Let me tell you all about this amazing group of people. Actually, it's a safe bet most of the people reading this know all about them. Seeing as you probably are the very people to whom I refer.

Up until the other night I had only experienced a Friday night pasta dinner when it was followed by a Saturday football game. Unbelievable is the only word I can come up with now that I have the experience of Molly's Pasta Benefit.

First, there are the wonderful people from The Bridge Academy. These folks came up with the idea, planned the whole thing, spread the word, cooked the food, arranged the tables...on and on. They did a tremendous amount of work. I couldn't possibly try to name them all, and if I did I would miss some people. So if you helped in any way to make Friday night such an amazing event, you know who you are, and we are deeply grateful.

Then there are all the people who attended. We put a guest book at the door to try to get as many people to sign it as possible, but by the time we got there the room was practically full. At 6:15 I'd guess there were nearly 100 people there. By 6:45 the parking lot was full and additional tables were being brought in. Most people say they're no good at this but I can safely estimate, within a few either way, that there were a whole bunch of people there.

And finally there were the thoughtful people who, though they were unable to attend, sent their generous gifts and kind thoughts to us anyway. We can't thank you all enough.

The amazing thing about it was that I didn't even know half the people there that night. I knew my friends and family, the folks from my office, and most of the Bridge people. But those people invited other people, some people read about it in our church bulletin, others just saw the signs and fliers out and around. The compassion people have for other people, when they're faced with adversity, is truly astounding.

I didn't get a chance to say anything while we were all there, but I did have notes written on a card in my pocket just in case. If I'd ended up addressing the group I would have said something like this [liberally translated from the notecard that I wouldn't have used because I like to speak without notes]:

People are always telling us how good we look considering what we're going through. They tell us they're impressed by our fortitude. We inspire them. The simple fact is that we don't know any other way to act. And we thrive on the energy we get from one another. But what you all couldn't possibly know is this: without the love and support we get from our friends and family - all of you out there - on a daily basis, we would never have the strength to be there for one another when we need it most. So thank you all for giving us the ability to do what we do.

I swear, it's on a notecard. I'll show it to you if you want.

The entire event was incredible. It was eye-opening. It was inspirational. Aside from all that, there were some excellent little sidebars that made me really happy. I am sure Erin has her own. Those of you who were there may have your own as well. But here is a quick list of things that made me jump back, in no particular order:

One of my buddies came out on a train from NYC, straight from work, still in his suit. He stayed for one drink and some food, and 45 minutes after arriving was on a train back to the city.

Another buddy drove all the way from north Jersey, alone, knowing no one other than Erin and me, with an 18 month old and a 6 month pregnant wife at home. He stayed for an hour and headed back north.

The placemats on each table housed business cards/logos of people who sponsored the event. Out of the corner of my eye I noticed one I recognized. One of my roommates from high school, though he couldn't be here, was thoughtful enough to partially sponsor the dinner from all the way down in Louisville.

A woman I waited tables with in 1996 was there with her husband and two adorable children. The event was at her husband's fire house and they saw the sign and wanted to support the cause. Turns out her husband's sister is a very good friend of our very good friends, and I'd actually held her little boy at a birthday party in October, without even knowing that I used to hang out with his mother.

A couple that I have known since high school (when they were just dating but already sharing the same last name) were there with their two handsome little boys. Word of mouth traveled through friends of friends, etc. I was completely caught off guard when I saw them, although I knew exactly who they were. Out of context, you know? I was so busy trying to connect the dots for how they ended up there, I forgot to even say hello. [By the way, if you guys are reading this, post a comment to the blog with an email address where I can contact you. I won't publish the comment, so I'll be the only one who sees the address]

Again, I can't even articulate how incredible the whole event was. Words can't begin to express our gratitude for all of your support and generosity. You all should have some great karma coming your way. But don't quote me on that, cause you know how much karma and I butt heads.

Saturday in Santaland

2006-12-03T07:13:00.000-05:00

Yesterday we took our annual [last year was the first year, but someone told me two years makes it a tradition] trip to NYC to do all the touristy things people do when they visit Manhattan in December. It was just Erin, me, and Gavin. Molly is still too small so she stayed with Grandma and Grandpa. We'll take her to see a local knock-off Santa. But the real Santa doesn't even seem to be the big draw. For Gavin, I think the train ride is the best part of the whole trip, but we go through the motions of doing all the other things as well, because, you know, we took the time to go all the way into the city.

Again this year he was thrilled with the train. As soon as we got a seat he started asking if we'd be going through a tunnel. By the time we reached Newark I think everyone in our car knew there was a tunnel coming up, and there was a little boy who'd be pretty psyched once we got there. Anticlimactic if you ask me considering the tunnel takes all of two minutes and, you can't see anything outside the train anyway. But he was happy.

The day started out on the eighth floor of Macy's, in Santaland, home of the real Santa. If you're a kid and you're reading this, stop now. There are at least eight Santas up there. They keep the line moving at an incredible rate and an elf meets you and escorts you to your real Santa, keeping the kids preoccupied all the way. But there I was trying to count how many alcoves they had that could be hiding additional Santas. Ask any of the elves how many are back there and they'll tell you, "just one." I tried last year too. The line was just starting to build when we arrived so we made it to the big guy in about 15 minutes. The train city is way more sophisticated than the one I remember from my childhood, but they still have the staples. And I am sure it took longer to get through the line back then.

After Macy's we started walking up toward Rockefeller Center. We cut straight across on 34th and noticed a really long line across the street; I mean we're talking New Kids on the Block in the Solomon Ponds Mall circa 1988 kind of length. Turns out it was a line to go up to the observation deck of the Empire State Building. I am happy to say this was not in our tourist itinerary. I know what the city looks like from up there, I have seen it from a plane. I don't need to freeze on a platform after waiting two hours in line and squeezing into an elevator with forty other people to get there. But hey if any of you guys think that sounds like fun, go for it.

We ultimately decided to go have lunch early - one because Gavin was asking if he could have something to eat every time we passed a street vendor (mid-town on a Saturday during holiday shopping season that translates to two per corner, minimum), and two because last year we waited an hour for a table at around 12:15. We made our way to the Heartland Brewery after taking a couple pictures in front of a fountain on Sixth Ave. I'll put all the pictures up on the Shutterfly site, with captions.

After lunch we finally made it over to the tree. I think they need to make the city a little bigger; particularly around Rockefeller Center, and the Fifth Avenue store fronts, in December. There were so many people there we actually found ourselves, at times, unable to move from our spot. I'd imagine it's a lot like the elevators to the observation deck of the Empire State Building, only minus a destination. The tree is a little gappy this year, if you ask me. That is to say, it has a lot of open areas between branches. I wouldn't tolerate that for my tree, but then again I don't have to find an 80 foot tree while hanging out of a helicopter.

After the tree we headed up toward FAO Schwartz. Talk about an efficient line: that thing starts around the corner, almost as far across as Madison, and you're in the store in less than ten minutes. We had to make a quick stop at Bergdorff Goodman, but we didn't buy anything. When we finally got into FAO it was straight up to the piano where Gavin got to do his best Tom Hanks, and then out. It's this gigantic toy store and for two consecutive years now we have gotten in and out without so much as touching anything that resembles a toy.

We caught the worst cab in NYC right out in front on Fifth and were on our way to the train station. Gavin fell asleep in the cab, which was very impressive considering the accelerate, brake, accelerate, change lanes, honk, brake pattern our driver was following. It was also unfortunate in that his brief nap on the way to Penn Station was enough to keep him awake the whole way home on the train. And since the tunnel is the beginning of the ride going home, after we came out on the NJ side everyone was subjected to repeated requests for another tunnel that was never actually going to be reached.

A good day. And officially a tradition.

Hips Don't Lie

2006-12-01T10:37:00.000-05:00

So it seems Molly has mild to moderate hip dysplasia. We knew this a while ago, but chose to put off dealing with it while faced with more immediate concerns. We double-diapered her for a while, which is a casual method of treating dysplasia and is precisely what it sounds like: an extra diaper. But we even put that off for a while around the time we went in for her NG tube.

At any rate, Molly Bear is heading to the orthopedic doctor today. She had an ultrasound months ago, and even had an orthapedic appointment scheduled, but we're just now getting to it.

Many newborns have this condition, and in most cases it heals on its own or with little treatement. In some cases it may require a brace until the hips realign. It's not a huge issue.

This kid had heart surgery; she is not the slightest bit nervous about her doctor visit today. [she told me herself this morning]

She did have a whole bunch of shots the other day. She wasn't even that fussy afterwards. I think once you've been through what she had to go through, things don't hurt as much. I got a flu shot yesterday and I still feel like OB punched me in the arm. If you don't know OB you're missing out, but the point is he punches hard. And Molly is tough.

All That Turkey Made Her Chubby

2006-11-28T09:38:00.000-05:00

We couldn't have been happier to have Molly home in time for Thanksgiving. It made for an even nicer holiday.

Once a week is certainly not an acceptable quantity of posts, so I promise to do a better job. And don't forget, since Erin and I do not coordinate even a little bit, you can always check her CaringBridge site for updates as well.

At any rate, our visiting nurse came to the house on Thursday morning to check in and see how Molly was doing. We're happy to announce that on Thursday Molly weighed in at a whopping six pounds and fifteen ounces. You may recall that was her birth weight? So after three and a half months she is back to where she started. We always joked around that we'd throw a party when she got back up to 6.15, but we just had a big dinner instead. You know, since it was Thanksgiving and all.

The yesterday Molly went to her pediatrician and weighed in at seven pounds two ounces. A healthy increase after a big weekend of eating with the rest of us. She also got some shots, which she was not a huge fan of.

This morning she went to the cardiologist who said her lungs are clear and her heart sounds good. Her incision is healing nicely. Everyone is pretty happy with her progress.

Next step is going to be to change from an NG tube to a G tube. My understanding is that the G tube goes directly into her stomach rather than through her nose and down her throat. I'm sure she'll be happy about that. More to come when I figure out what all this means.

MOLLY IS HOME!

2006-11-21T19:03:00.000-05:00

After three weeks, Molly is finally home. She was discharged this afternoon around 3:30. Unfortunately I was unable to get back from Boston in time to bring them home from the hospital, but what a great "welcome home" to have the whole family home again.

Thanks to all of you who have been so caring and supportive of us during the last few weeks (and months). We're very lucky to have such wonderful friends.