"Have You Updated the Blog Yet?"

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

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...

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

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

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

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

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

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!

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.

You Might Live in a Hospital If – You know your best friend’s name because it’s on his uniform.

Joe works in Environmental Services at CHoP. He was a boxer for nine years and I would guess he was pretty good. He likes the Colts and the Cowboys, “straight down the middle.” I don’t understand it, but I respect it. He hates the Eagles, which is tough to do when you live in Phila – and enough to catapult you to the top of my list any day. We talk about football and PlayStation. He waited in line for three days this week to get PS3. He was the sixteenth person to get a PS3 at the store where he waited. The store only had twenty units. The kid who got unit number six was robbed at gunpoint in the parking lot. Joe and his cousins went out the side door. His biggest complaints were that he could only get one game (they started selling games three days before consoles, so now 800 people have games for a console they couldn’t get because they didn’t sleep outside for three days) and the tax on the console was $56. I told him he should have gone to Delaware where there is no sales tax. He told me his sister lives in Delaware and the store near her was giving away t-shirts. Joe and I agreed we would not wear those t-shirts. That’s like holding up a sign displaying the balance in your checking account as you walk into an ATM vestibule. I asked him if the t-shirt said, “I got a PS3 and didn’t get jacked in the parking lot.” Joe thought that was funny.

He also thought it was funny that I went to the Giants game last weekend in the freezing rain. He thought it was funny when the guy on the Bears ran a missed field goal back 108 yards. He still thinks it’s funny that Peyton is way better than Eli. He opined that, “every family has a frick-up in it.” Joe and I still have some differences to work out.

But Joe is very friendly. The Environmental Services group out numbers most other departments in the hospital and for the most part they don’t say much. When Joe rolls in I am afraid he is going to get in trouble for spending too much time in our room.

Erin says the Environmental Services guy who comes on weekdays is Moses. But her best friend is Walt: He gives us food vouchers for the cafeteria, checks in on Erin on a regular basis, and calls me Mr. Brown even though I have asked him not to. I passed him in a completely different part of the hospital last week, as he was leaving to go home, and he still took the time to stop me and ask how I was doing. Good people.

You Might Live in a Hospital If – The Concept

For almost three weeks we have been essentially living in the Children’s Hospital of Philadelphia. For a week before that we lived at Robert Wood in New Brunswick. For three days at the beginning of October we lived at St. Peter’s in New Brunswick. For the couple days after Molly was born we lived at University Medical Center of Princeton. With the exception of this 18 stint at CHoP, they’ve basically been layovers. But when you spend a full 24 hour period somewhere, you get to think like an insider. When you bring a suitcase, you’re living there.

I have mentioned people, places and things from the various medical institutions throughout the existence of this blog. I had an idea to write a post about the different types of nurses you encounter; the doctors; something about the food. Then I thought Why not make it a series?

So I will continue to post updates and other tidbits of information as well. But occasionally I will write about something that relates to life in a hospital. I’ll entitle these posts “You Might Live in a Hospital If – insert potentially clever but likely straightforward descriptor here” Since we’ll be going home Tuesday (see paragraph two of previous post re: my plan for rounds this morning) I will likely be writing about things that have happened in the past. I’ll do my best to have it make chronological sense, but since this is my blog I don’t have to.

These are in no way intended to incite sympathy. I don’t want anyone to feel bad that we have to live here. Remember, it’s always about perspective. I just want to give some in-depth insight [how do you like that? Incite and insight in the span of four sentences.] to what happens when you spend this much time in a hospital/(s). You know those guys who are always on Good Morning America or the Today Show, who give tips on how to travel? Tell you which rooms in the hotel have the best water pressure; suggest which airline to fly based on where you’re going, and what seat to get for the most legroom; teach you who to grease and how to grease them to get better seats at a game or a table with a view in a restaurant. I’m going to be those guys – but for less fun stuff.

If it doesn’t work, I’ll stop.

I'm Lovin' It

I’m just returning from the highest grossing McDonald’s in the US. After I wrote the last post about McDonald’s I had a friend tell me how the journal he kept while traveling in Europe talked about how he ate in McDonald’s everywhere he went, and even told what he ate. I would hate for this space to turn into that, but I couldn’t let this go.

You may recall me describing the scene from my last visit: A young lady handed me milk and coffee and I wondered if she actually thought I ordered milk and coffee. Just now I went down and ordered, “a large coffee with milk and two apple pies.” A completely different young lady asked me if I wanted a milk and a coffee. I guess that answers my question.

Incidentally it also came out to $1.82. The other night it was $1.75 for the exact same thing. Highest grossing McDonald’s in the US.

I Was Minding My Own Business, I Swear.

It seems actually being in the hospital gives me a) more material and b) more time to post. Unfortunately it also seems to provide opportunities to write about things other than Molly. That doesn’t make the site less about Molly, it just makes it more about what’s going on in our lives as a result of Molly.

This post is certainly no epiphany. It’s not even that interesting. I am having a hard time convincing myself to even publish it.

A story for you: I am walking into the cafeteria and I end up behind an employee in all black, head-to-toe. He is a food service employee; they all dress like that. I guess in an effort to support the home team, and break up the black floor-to-ceiling, he put an Eagles sticker on the back of his hat. I wondered silently if I could unpeel it without him knowing. But I was six feet behind him.

Now I am standing in line waiting for my sandwich. I hear, “nice hat, dude.” I am rocking the white, flex-fit, mesh-back sideline cap from this season. It is a nice hat, but I am not foolish enough to believe that the owner of this voice is genuine. I nod slowly as I look up and see Johnny Cash spinning his hat around to display his sticker.

“Yeah thanks. I saw that on the way in and thought about pulling it off.” He replies with something about wanting to see me try it or some such thing, and then walks away muttering something that ended with, “Eli, wee-lie.” I wish I could tell you what he said, but he appeared to be speaking with this bizarre accent that is indigenous to a 40-mile radius around Pattison and Broad.

Then a little while later I am waiting for an elevator on Molly’s floor. It was taking forever because, as I found out later, there was an incident on the seventh floor that left us with one shut down elevator, one stuck elevator, and one operable elevator. Apparently a woman on the seventh floor was in an altercation with an employee that resulted in the dispatch of security. By the time they arrived the husband was involved as well. They tackled him. She came to his aid. They both got cuffed. Eight security guards dragged them into an elevator; they fought in the elevator – eventually stopping it between floors. Elevators one and three shut down automatically. Then they got one working again. But I literally stood there for eight minutes waiting for an elevator. This was before I knew the story.

In the waiting area behind where I am standing there is a twelve year old kid. I hear him start going “oh my god, oh no, oh no.” His parents are naturally concerned. “That guy is a Giants fan,” he says. “That guy has a Giants hat on and I have a Cowboys hat on and Giants fans hate Cowboys fans.” I am not the only one standing there. I am sure I am not the only one hearing this. He keeps going. “Oh my god I can’t believe there is a Giants fan.” Strange. Like he’d actually never seen a Giants fan before.

The elevator finally arrives and as the doors open I turn to offer the young man some words of wisdom. I tell him, “Cowboys fans hate Giants fans. Giants fans don’t pay any attention to Cowboys fans because we’re all too busy hating Eagles fans.” I slide into the crowded elevator, next to a big food cart and from the other side all I can hear is somebody mumbling in a strange accent something about injuries and “being all done.”

Freakin’ Johnny Cash.

Freakin’ karma.

Freakin’ Eagles fans.

Quick Molly Update

Molly is progressing very nicely. Slowly - but nicely. As I type this they are administering her pain medication, from which they are starting to wean her. She is still eating continuously, at full volume (18 mls/hr), at 22 calories. The plan is to increase her calories to 24 this morning [As of two seconds ago when I asked the nurse if that had been done – it hadn’t. We’ll get to the bottom of that. We are beyond being passive observers; we now drive the bus]. After it’s determined that she can tolerate full volume/full calories, they will begin feeding her on a normal schedule – one which we can maintain once we leave: 72 mls/hr, every four hours. As a frame of reference, she was eating about 48 mls/hr, every four hours, before we came in for surgery. She has been tolerating feeds well since she started eating again on Wednesday. No reason to think she won’t do well, but we’re beyond assumptions.

Somehow I missed rounds this morning. I think the docs hide out in the hallway and jump from room to room based on which parents have vacated the area. They want to avoid the barrage of questions they receive from parents who have been here long enough to catch on to how things work. We’ve been here now for 18 days; long enough to catch on. Incidentally I wanted to be here for rounds this morning as much to meet the doctor as to fill them all in on my perceived plan of action for the next three days, which culminates in us walking out the door Tuesday afternoon.

The attending on this weekend is a Lawrentian. Erin had a Lawrenceville t-shirt on the other day, so they made the connection. She told him I went there. Then she told him I worked there. Then she told him what I did. Word is he isn’t psyched to meet me. SLC, he is your prospect, I’ll qualify him for you.

I have no internet access in Molly’s room. There is a jack, and I have an Ethernet cable, but according the IT guy who was here a few minutes ago it may be disabled. He is working on it, which I appreciate, because it is Saturday and there aren’t usually IT people here on the weekends (or at night). I have some work to do, so that would be nice to have. There are three computers in the lounge, but people are always waiting to use them so I don’t want to take one over for two hours while I work. Not that I could even get my work done in there with a hundred people.

Last night Erin and I stayed in the Penn Tower hotel across the street. I wouldn’t recommend it for a vacation, but it’s not nearly as bad as the reviews I read said it was. It was nowhere near the worst hotel I ever stayed in. It was relatively clean. But you can’t beat the location, or the price. We got a full, uninterrupted night of sleep while only leaving Molly for about 9 hours. And we were right across the street in case anything happened. For the record the Penn Tower gets two full stars more than Allegro pizza. We should have stuck with The Greek Lady.

Top Ten Reasons Gavin Kicks A$$

We’ve been concerned about how Gavin would respond to Molly since her diagnosis in March. How will we explain everything to him? Obviously we were concerned when she was born. Will he resent her for getting too much attention? And we’ve been very conscious of him during the last several weeks while Molly has been in and out of hospitals, particularly the last two weeks while she has been here. I took him to a Giants game a couple weekends ago, just the two of us. Erin and I took him to the Please Touch Museum on Saturday. We try as often as possible to have him sleep at home in his own bed, but when he can’t he loves spending the night at Grandma and Grandpa’s house. All in all he has been incredible. He amazes me on a daily basis.

So I offer my son a tribute. Gavo, you might just be my hero and these are the top ten reasons you kick a$$:

10. We go to the Please Touch Museum and afterwards all you want to talk about is the taxi. Last year when we took you to see Santa in NYC you would have been satisfied if we’d gotten right back on the train in Penn Station and headed back home. Someday I will take you to London, like you’ve been asking, and when I do all you’ll want to talk about is the big, big plane that takes us there.

9. Your favorite part of going on trips, admittedly, is eating Pop-Tarts.

8. At your first live Giants game you fell asleep on my lap for a solid hour, which included the eventual game-winning drive and accompanying crowd noise. You never once asked to leave until five minutes remained in the fourth quarter, which was about the same time everyone else was leaving anyway. And now, over a week later, you’re still telling me how “Shockey got hammered” and dropped the ball in the end zone.

7. You like eating everything bagels with cream cheese. Or everything bagels with egg and cheese. And you’ve even gone so far as to ask for an everything bagel with egg and cream cheese. Oh yeah, and eat it when I made it for you.

6. You can identify Kurt Busch’s #2 car as “the beer car” because it looks just like the bottles in our fridge. You can also identify Junior’s car, but you call him Dale Frunham Junior.

5. Last night when we went to the grocery store you actually picked the menu, pushed the cart, filled the cart, and scanned the groceries. Too bad you couldn’t buy them. But you did give me a hug, and since I would pay for those hugs it seems you sort of did.

4. Your favorite songs over the last six months have been Bad Day, Hips Don’t Lie, and Sexy Back. You have no idea what they mean and you make up your own words anyway, but you can identify the songs and tell me they’re your favorite.

3. The other day when you were playing on the floor you noticed that your knee hurt because it had a rugburn. You said you couldn’t play with your cars and push them around on the floor because it hurt when you did. You asked me to kiss it to make it better and I did. You haven’t even mentioned the rugburn since.

2. When we were leaving the hospital one of the first nights and you didn’t understand why mommy had to stay you started to cry. I told you to try not to cry because it would make mommy sad. You actually stood yourself up, wiped off your tears and gave mommy a big hug goodbye. Then when we got around the corner, out of her sight, you started crying again

1. You’ve never once asked why Molly is in the hospital. You're always anxious to see her and give her a kiss. You don’t even know she is sick. You know the tube in her nose is so she can eat, but you’ve never asked why no other babies have them. None of that matters to you. You just love her because she is your baby sister and you’re her big brother.

Incidentally, this post may lead to a follow-up:"Top Ten Things Gavin Says That Make Me Laugh Out Loud." Oh and also, this list could have been a Top Fifty. He is definitely my hero.

Delayed Reaction

It’s been a few days since I have added anything to this space. In that time a few people – more people than days have passed – have asked me when there will be another update. I guess people actually read this occasionally? I am not going to be so foolish as to claim an audience, but I will be sure to watch my language, and change names of people who may not want to be mentioned. I should probably be careful not to insult anyone I work with; try not to point out the annoying habits of people I interact with daily. It’s a good thing this is about Molly.

If you’ve never been to the Children’s Hospital of Philadelphia you probably don’t know it’s home to a 24 hour McDonald’s that is said to generate more revenue than any other in the country. It’s also notorious for having the worst service of any service-based establishment. I must say though, my last two visits (there have been three total: one the very first time we came here – 10/17, I believe, one Saturday evening when I realized the cafeteria closed an hour early on weekends, and one just a few minutes ago) have proven the poor service label unwarranted. Granted the first time we waited 12 minutes for a cup of coffee and an employee berated a customer who claimed not to have enough strawberry in his chocolate/strawberry shake, but seriously the last two times have been great. Actually the most recent one was also just plain weird. I went down for coffee. I ordered a large coffee with milk. The young lady went to the refrigerator and took out milk that would go in a Kid’s Meal and handed it to me. Then she grabbed a large cup and said, “you know this one is 75 cents? The small is free.” You’re telling me the highest grossing McDonald’s in the US would just hand me a coffee if I walked in and asked for a small coffee? And could she have possibly thought when I said “coffee with milk” that I meant a coffee and a milk? Then I asked for an apple pie. She said, “two for a dollar?” I said sure. So I am standing there confused for a lot of reasons. First, I am sure the commercial says you get any size coffee for 69 cents. But apparently the small is free and large is 75. I still can’t figure out why she has handed me a plastic container of milk, but I use it for my coffee and leave the rest on the counter, and now I have two apple pies when I wasn’t even sure I really wanted the one I ordered. Bottom line I spent $1.75. If I had gone with the small coffee and walked out before succumbing to the urge of a tasty apple pie I would have spent nothing. Even if I had gone for the single apple pie I could have snuck out for 50 cents. Highest grossing McDonald’s in the US.

So what’s going on with Molly Bear? Well she is currently sleeping comfortably. She didn’t have a great night last night so I am hoping she has a better one tonight. She started eating on Saturday afternoon and they’ve been increasing her volume every twelve hours. After three days she is up to 13 mls/hour. A normal feed is 60 mls/hour so we have a ways to go. But the good news is that she is tolerating the feeding well, she hasn’t had a fever, and in general she seems comfortable. No one seems in any rush to make predictions on when she will be going home. Today they mentioned that they wanted to keep a closer eye on her incision as it is starting to look more red than they’d like. Since immediately following surgery we’ve heard nothing but good things about the way her incision was healing, so it’s a little frustrating to have it flipped when you’ve started to focus on the road toward home.

Molly’s three month birthday was last Friday - pretty cool. Today we’ve been in the hospital for two weeks – not as cool.

How About Some Good News?

Molly Bear moved into a step-down room in the CCU this morning. That means after eight days she is no longer in the Intensive Care Unit. I haven't seen her yet, but Erin called as soon as she heard the news. I am heading down there this evening to spend the night.

The tests she had yesterday revealed that nothing is consistent with the colon disease they were concerned she had. She also had a PICC line put in yesterday so she can receive meds and nutrients without having to constantly remove and re-insert IVs in her hands and feet. Last night when I was there she looked better than she has in days. And Erin says she slept pretty well, too. She is going to start on formula soon, and her course of antibiotics ends tomorrow.

Perspective, I know, but the drive is BRUTAL. I am so tired of I-95. Whatever. Tonight I am looking forward to it.

Meeting of the Minds

Erin and I are completely fried. Luckily Erin writes things down or I'd be totally lost. I had a surgeon tell me last night we had met already yesterday morning. I do recall meeting someone, and that he was a surgeon, but if you had lined him up with nine other people I wouldn't have been able to pick him out.

So there are a few reasons for my long break without an update. Number one is above.

Number two is my trip to Boston; it totally threw me off schedule. Forty-two hours away from the hospital and I lost all track of what was going on. I really thought I would be able to update on Saturday afternoon but so many new medical developments arose that I didn't feel in the loop enough to write anything. I am slowly catching up.

Number three is that I was in a bitter spell: probably the result of numbers one and two. I think I may have caught up on sleep enough to overcome this now. However, I saw no point in writing something that was laced with bitterness and anger (sarcasm and cynicism I have no problem with). Sure we like to share things, but why bum everyone out when most of what you have is bad news?

So for updates on things that may have happened since Friday, check Erin's journal here.

Sunday night Erin went home to get some decent sleep. She hadn't had a good night sleep since before Molly's surgery. I stayed at the hospital with Molly. When Erin got back to the hospital Monday morning I headed to work. By 3 pm I was back at the hospital because one of the surgeons, an attending cardiologist, our nurse, and a social worker had scheduled a meeting with us for "between 3 and 4." At 4:48 our nurse brought us into a conference room where the social worker was waiting. At 4:50 the surgeon came in (the one who told me we'd met that morning) and told us he had five minutes. I actually had to physically stuff the words back into my mouth as they came out so as not to upset anyone right off the bat. I actually decided at that point to say very little for the rest of this meeting. Surgeon started talking and then the cardiologist joined us.

Basically the surgeon told us they needed to perform one test to rule out something and then after that they'd do a biopsy that would test for something else [I'm sparing you the details, but all these tests involve intestines, bowels and colons - so you're welcome]. Apparently they felt the need to get us all in a room to share their "planned course of action".

Then the surgeon excused himself, kindly gave us the go-ahead to page him any time, 24-7, and left the meeting in the hands of the cardiology attending. He then said something about how the cardiologists would proceed in treating Molly "medically" after the surgeons had explored all their "surgical" treatments.

Bottom line: Molly's heart and lungs look good. Heart surgery did what it was supposed. But other issues have arisen that they are treating now. More surgery (for things other than her heart) don't seem likely right now, but she is pretty uncomfortable. She is being treated with antibiotics, this is day five of seven. After all the tests are done, and the antibiotics are finished, they will slowly begin feeding her again. The schedule for going home is not even on the table right now. I'd guess at least five more days.

Erin and I were talking about the Jerry Springer show yesterday. In college I used to skip a Philosophy 101 class at least once a week to watch Springer. I tried to explain to Erin how it was a better show then: real people, fewer fights, and thought provoking "Final Thoughts" from Jerry that could be applied to real life, even if you weren't an exotic dancer toying with the idea of becoming a man. So in honor of the Jerry Springer Show circa 1995, my final thought:

When your actions have a direct impact on others, it's even more important to keep open lines of communication. Sometimes we get so wrapped up in our own desire to complete a task or reach a goal that we forget to keep the people informed who will be imperative assistants along the way. Inevitably something falls through the cracks and fingers begin to be pointed. Then we actually take two steps back. If we'd all just work together from the beginning we could avoid a lot of frustration and missed opportunities. When you sense someone's frustration, bring them in the loop right away. A lot of things can be worked out over an impromptu discussion of what you're planning and how you plan to get there. It doesn't always have to be a meeting. But if it is a meeting, make sure the agenda is clear and concise. Don't be late. And by all means, make sure you actually accomplish something before the meeting breaks. Until next time take care of yourself, and each other.

A Single Room

After some extended periods of fussiness, and a skyrocketing 104 fever, the doctors decided to move Molly to a private room at about 8 pm last night. They were thinking she may be getting too much stimulation with all the lights and alarms and people hustling about in the four-pod room she was in. Erin and I returned from dinner to an empty pod, and were quickly ushered to her new location. I'd be lying if I told you my heart didn't drop in that few seconds it took for someone to tell us what was going on. Her fever broke at about 4 am. She has been pretty good since then.

Her new room is huge. However, she won't be there long. After morning rounds the doctors decided to move her from the CICU and into a regular room at some point today. Erin got to stay with her last night, and I enjoyed one more night in a Sleep Room. Unfortunately the combination of karma (you'll recall I badmouthed these rooms in this space yesterday) and a new couple who were obviously not apprised of procedure, almost prohibited me from sleeping at all. You fill out an application in the morning and by 2 pm they determine who will be offered the five available rooms. That room is then yours from 7 to 7. Yesterday mine was room #4. At 10:30 pm when I went in to go to sleep, the door was locked. Someone decided to just go ahead and take a room. Fortunately there was another empty and they offered me that one. So even though I plan to go home tonight I went ahead and filled out an application for a room this morning. Challenging karma yet again. Erin says there is something wrong with me.

Luckily my mom has been staying at our house and taking care of Dublin. Also, since she is there, she was able to deal with our broken refrigerator. When it rains it pours they say, and in this case it poured from the full ice bin that melted once the freezer stopped working. Someone is going out to look at it this morning, but doesn't it just figure? Thank goodness for moms.

Back to Molly Bear. She is now resting comfortably in her huge room. Erin is sitting with her enjoying the quiet. I'll head home tonight, into work tomorrow morning, and up to Boston tomorrow afternoon. I'll be back here by lunch on Saturday and will try to write an update then...once I figure out what's going on. In the absolute best case, I'll be able to write it from home - with everyone there.

The Day After Surgery

Molly had a good night last night. She has not as good a day today. I think, like anything else, it hurts more the day after. They have taken her off morphine and started her on a lesser pain medication. Obviously they don't want her to be in pain, but they can't overdo the pain meds either. She is currently in Erin's arms - screaming her head off.

All in all she looks good though. There is some talk of moving her to a step-down room tonight, but we'll have to wait and see. If she is still as uncomfortable as she is now, it seems odd they'd move her. Hopefully she'll be able to come home by the weekend.

She started on formula last night and has been tolerating her feeds well. Some of her discomfort could be from the food - starting again after not eating for almost an entire day? I'm not a doctor, what do I know?

Miraculously, in this gigantic hospital there is no place to pick up a wireless signal.

Erin and I got to stay in a Family Sleep Room last night. It's a little misleading. If they were to call it a Medium-sized Individual Sleep Closet you'd have a better idea of what it looked like: twin bed, chair (basically on the bed), one light. I could touch all four walls from the center of the room. But I slept like a rock - at least from 8 pm until 9:30 and then from 10 -3. Otheriwse not so much. But I shouldn't complain because the alternative to a FSR is a recliner in a public lounge or a bench down in the lobby.

Highlight of the night was dinner. The Greek Lady delivered up a gyro, souvlaki and some baklava. She will be called upon again tonight. If you're ever in the neighborhood, I highly recommend it.

Molly's Out of Surgery

Surgery went well and Molly is in recovery now. She is still out of it, but Erin and I get to hang out with her. Actually Erin and G-ma and Grandma are currently hanging with her - I am typing this post.

She looks good. She is a tough kid.

Update from the Hospital

Since nothing can ever be simple, we were thrown yet another curve ball this morning when we arived for Molly's surgery. During the surgeon's briefing this morning the doctor who performed the catheterization indicated that there may actually be a second VSD, a muscular VSD, which is rather small and difficult to locate. The surgeon came in to speak with us and gave us all of this new information.

Apparently he would have to close the larger VSD, take Molly off the heart and lung machine to allow her blood to flow on its own, determine whether or not there was a smaller VSD, locate it, and finally go back on the machine to close that VSD. While he explained this to us he was much less assertive than he had been in our previous discussions. While there was no strong recommendation, he seemed happy with our decision to go with a banding for this surgery.

So Molly is in the OR as we speak. Our first update was 10 minutes ago and all was well. We'll know more in an hour, when the procedure should actually be completed.

Molly's recovery and hospital stay should be shorter with this surgery, so that's nice. Unfortunately, as you may recall from an earlier post, this is only a temporary fix. This will get her out of heart failure and ideally prevent us from having many episodes like last week's trip to the ER, but one can't tell. At any rate, if this surgery is successful, and it allows her to be comfortable, and keeps her out of heart failure - all best case scenarios - it will still require a follow-up surgery in a few months to close the VSD(s).

Stay tuned. I'll try to update again later.

Molly's Home for a Few Days

Molly came home from RWJ on Saturday evening. Her fever was down for the better part of two days, and she had held down several consecutive feedings. She probably could have come home sooner, but she was having a hard time digesting her feeds. Turns out there was a slight mistake regarding the amount of time over which she receives her formula. Apparently shortening that time by 30 minutes makes her throw up. Go figure.

Everyone at Robert Wood was fantastic. I was a little skeptical at first because I wasn't a huge fan of the folks in the ER. But let's face it, they have a job to do. And in the first few minutes a 6 lb 10 week old arrives, that job is not to make her dad feel good. So after everything calmed down I changed my tune. Her cardiologist was phenomenal, and took really good care of her. All the residents were great. The nurses couldn't have been nicer.

I think Gavin was a big fan of his visits to the hospital. There were a bunch of animal sculptures in the lobby that talked when you pressed a button. He loved that. He also found some enjoyment in pressing the buttons on all the elevators. And then, of course, there was the play room on the fifth floor. I must admit, I had fun with the Spider-Man puzzle.

As of right now I think the plan is still to have surgery tomorrow. The cardiologists indicated that being fever-free for 48 hours would be enough for them to go through with the procedure. I guess we'll find out for sure in the morning, but as of this morning it looks like it will happen.

More to come.

Yet Another Hospital

As you know, Molly woke up with a cold on Monday that caused her surgery to be postponed. Well she continued to be fussy and uncomfortable for the following couple days. On Wednesday she was extremely warm and was having some difficulty breathing. Erin took her to the pediatrician, who immediately had her sent to the hospital; Robert Wood Johnson, the fourth she has been in since birth. Her fever was 103.1 and her breathing was incredibly labored. The diagnosis upon admission was congestive heart failure. She was treated in the ER, and within an hour or so, she was settled in a room in the pediatric ICU. Erin and I were able to stay with her the whole time. They treated her fever, gave her antibiotics for infections, and put her on a machine that assisted her breathing (she was breathing on her own all along).

Thursday started out fine. When she woke up her fever had gone down and her breathing was stable. She got a little bit upset (because a phlebotomist stuck a needle in her while she was sleeping) and ended up with a spiking fever and needing breathing assistance again. By the afternoon she was sleeping comfortably and her fever was once again working its way down.

As of this morning her fever was gone and she was breathing completely on her own. She is still being treated with antibiotics, and she is being monitored closely, but she seems to be progressing. If she gets healthy enough in the next couple days she will be having surgery Tuesday, as planned.

Postponed

Molly woke up with a cold Monday morning so the hospital told us not even to make the trip down. We've rescheduled (tentatively) for Tuesday, October 31.

It's kind of a bummer because people had made travel plans based on a surgery date of 10/23, and now they have to shuffle things around. It's also tough to mentally prepare yourself for something and then completely scale it back so that you can get ready to prepare yourself again in a week.

Not to mention that 10/31 is Halloween. Hopefully it doesn't have much of an impact on Gavin's Halloween plans. I think this is the first year he has been able to understand, and as a result he is really looking forward to dressing up and going out to trick-or-treat.

I'll post Molly's surgery date when it's confirmed. Once again, thank you to all of you for being so supportive.

The Answer is Yes

We've decided to go ahead with the surgery. Molly is on the schedule for Monday. We're waiting to hear back from the hospital to determine what time she needs to be there. I have no explanation for how we came to this conclusion. But we're in 100% agreement and we're going to stand by this decision no matter what.

More to come.

Decision Time

I was exhausted last night. I had to go back and read what I posted because I was not certain it even made sense. But I promised to keep the site up-to-date. Upon further review it seems last night's post does, indeed, make sense. However, it doesn't offer much detail.

We left the house quite early - before 6 am - for our 8 am appointment at Children's Hospital of Philadelphia. By the time we left it was almost 6 pm. By the time we got home it was almost 9. It was a fairly long day. Physically and emotionally draining.

Here's a run-down of Wednesday, October 19:

6:10 am pull up in front of a dark Starbucks that opens at 6. "CLOSED due to water main break" reads the sign on the door.

7:15 am arrive at CHOP. Using our "sophisticated institutional knowledge" we find our way across the street to an Au Bon Pain for coffee and breakfast.

7:40 am check in on the 6th floor of the Wood Center building in the "Cardiology" department. Find humor in the fact that both the Main Hospital and the Wood Center have cardiology on the 6th floor. We head to the Main Hospital where we're supposed to be.

8 am check in on the 6th floor of Main Hospital.

8:05 am we're back in a prep room. Nurses are asking us questions and filling out paperwork and taking measurements, etc. We're told the doctor who is performing the procedure would like to speak with us.

9:55 am he appears. He is tall, probably 6'5". He doesn't have the same appreciation for personal space I do. He has me backed into a corner. I consider climbing out the window.

10:05 am he walks away having explained to us that there is a chance they may have to put Molly on a breathing tube during the procedure and, if this happens, there is a slight chance she may not be able to breathe on her own again. He agrees to send the surgeon in to see us.

10:10 am the surgeon is sitting with us explaining how the surgery would go and why the catheterization is going to be helpful. He asks us to consider what we're hoping to accomplish from this surgery. He seems concerned that Molly will need assistance breathing and that if she does she may have trouble recovering. He says the catheterization is a good idea because it will give us a lot of additional data. He doesn't seem concerned that Molly will need breathing assistance during this procedure. He tells us he'll contact Genetics to come see us. We're not sure how we feel about the cath doctor; we're positive we like the surgeon.

10:30 am a nice woman arrives to put an IV in Molly's left hand.

10:40 am and three pin holes later Molly has a nice, secure IV in right forearm. Molly doesn't particularly enjoy needles. She also isn't psyched that her last feeding was 12 hours ago.

10:45 am two masked, capped, and scrubbed women arrive to transport Molly to the 3rd floor. We accompany them down the elevator and into the hallway outside the exam room. We say goodbye to Molly and head back up to Cardiology where we meet a geneticist in a private room.

11 am we're joined by a genetics counselor and we continue to answer questions about Erin's pregnancy and ultrasounds. They give us some statistics, which we already know and then we wrap up. We have about 20 minutes so we decide to go outside and make some phone calls.

12:05 pm we're back in the Cardiology Reception area when our nurse comes out to tell us Molly is doing great and she was numbed with local anesthesia and given a mild sedative. No breathing concerns. Next update is in one hour.

12:30 pm we're back across the street at Au Bon Pain having lunch. We decide to eat outside since we have thirty minutes before another update. We make a few more phone calls.

12:50 pm my phone rings. Molly is done. We need to head back to the 6th floor.

1 pm we arrive at the reception area and we're ushered into a conference room; not the same one we met in a few hours earlier. I make a joke about home field advantage and how I think we should switch to the other room. It breaks the tension, but we're both visibly nervous. I refuse to sit down; Erin is maniacally rubbing her "angel of worry". I am assuming they would have told us if something were wrong. I am not sure I am making a good assumption.

1:15 pm Erin's sister Cara arrives to visit on her break (she works at CHOP). We tell her we haven't spoken with anyone yet and she excuses herself to wait in the reception area and eat her lunch (half of Erin's lunch).

1:30 pm Cara is talking to the person at the registration desk. She is using her status as a nurse to gain access to Molly. She passes our waiting room on the way to the recovery area.

1:35 pm Cara is back and she confirms that Molly is ok. She is going back to work. Erin and I are relieved.

1:40 pm the doctor who performed the catheterization arrives to tell us everything went well. Deep down I wonder why no one told us that over the phone and instead made us wait 40 minutes in a private room. I confirm that I am not a huge fan of the cath doctor.

1:45 pm we're back in recovery (which is also the prep room) with Molly. She has to lay still until 4:30 pm. She is mildly sedated but certainly knows we're there. Occasionally she lets out a muted roar. But then she falls asleep again.

2:15 pm the surgeon is back to see us again. We continue to discuss to discuss the risks and scenarios and weigh one versus the other. He shares some of his experiences with us. He gives no indication of what he thinks we should do. Actually that's not even accurate - he doesn't even have an opinion. He recognizes this is entirely a personal decision and we need to come to a conclusion based on what is best for Molly, as her parents. He confirms this by reassuring us there is no right decision. Surgically speaking he has no concerns; he knows he can do the surgery. Recovery is a different story. Progress another still. He wants us to make a decision that "one year from now we'll all look back on and be happy with." He's good people.

2:45, 3, 3:30, etc, we're hanging out. Nurses come by to check on Molly often.

3:45 pm the surgeon returns one final time. He recommends that we take Molly off the schedule for tomorrow and take her home. The decision is agonizing and it can't be made standing in a recovery room on the cardiology floor of the hospital. There is no harm in waiting. He is going to get her on the schedule for next week.

4 pm I call home to let everyone know we're coming home, with Molly, in the next couple hours. I make this call on the way over to Au Bon Pain for the third time today. Three cookies, and another cup of coffee.

4:10 pm I return to the recovery room to find out that the surgeon has Molly on the schedule for Monday. We have to let them know by Friday if we want to have it. I reconsider my previous opinions of our surgeon.

4:20 pm Molly gets set up for her first formula feeding since last night at 11 pm. Her feeding takes about an hour and then we'll be discharged. Cara's shift is over and she is now hanging out with us. The recovery room is now empty except for us.

4:45 pm the geneticist and genetics counselor we met earlier stride through the sliding doors led by a third woman. She identifies herself as, "the one we didn't meet earlier." She washes her hands and asks if she can "look at Molly." She starts to push past me in the chair I am in (something about these people and my space) to get near Molly. The whole other side of the bed is free of people and she is squeezing into a small space between two people in chairs. I completely shut down. I decide I am not going to say anything out of fear that my filter has worn thin; shutting down is safer. I move to the opposite side of the bed and take my I am only here physically stance. A thorough examination ensues. After they ask us the same questions they asked us earlier, and write down the same things they wrote down earlier, and spew the same stats they spewed earlier, the one we didn't meet earlier asks, "So how can we help you?" I swallow my tongue. My angelic wife grins at me, looks back at the one we didn't meet earlier, and politely states, "I don't think you can." Somehow it seems so much nicer coming from her. Have I mentioned how much we like the surgeon?

5:10 pm Molly is finished eating and we're starting to get her ready for discharge. Cara is on her way home. Chinese food is on the menu.

5:35 pm we're walking out of the recovery area and thanking all the nurses who have taken such good care of us. The nurse practitioner [sidebar: we're not sure what the difference is between a nurse and a nurse practitioner. So far in our experiences the only thing we have come up with is that nurse practitioners wear street clothes and nurses wear scrubs. That's probably not it though.] is handing us her card and reminding us to call Friday with our decision.

5:55 pm we're pulling out of the garage and heading home.

7 pm we're eating chinese food and watching Jeopardy with the whole family, at the Logan's. My mom has been there all day, since arriving from Boston at noon.

8:40 pm I am trying to get Gavin into the shower so he can get to bed at a reasonable hour. I have promised him he can watch a show before bed. His lunch still needs to be made. Tomorrow is the big fire house trip. I just want to go to bed.

9:45 pm Gavin is asleep. My mom is holding Molly while she gets her formula; they're both asleep. I am blindly typing an update on this blog. Erin is on the other computer typing a message to her support group. Very, very tired.

Catheterization Pt. 2

Molly went in for her cathererization today. Ultimately all went well and we're home now. After the requisite four hours of lying flat, we were able to bring her home. If we had decided to go through with the open-heart surgery that she was scheduled to undergo tomorrow, she would have had to spend the night. Obviously we chose to hold off.

She is currently on the schedule for Monday. We're supposed to call the hospital Friday with our decision.

I'll write more detail about the day tomorrow morning. Far too tired right now.

Catheterization

We returned from CHOP this afternoon. With the exception of a little blood being drawn Molly is just fine. We're scheduled to be back there tomorrow morning at 8 am when they will begin the catheterization. She has to lie completely still for six hours - requiring sedation - so she'll probably spend the night tomorrow night. Not sure yet.

Although we met a number of doctors and nurses today, we didn't get a chance to meet with any surgeons. More to come tomorrow after the tests are done. There is a possibility she could go for surgery on Thursday. Not sure yet.

Seems to be a theme: Not sure yet.

CHOP

We're heading to Children's Hospital this afternoon for some pre-admission tests (chest X-ray, blood, etc). This procedure will take a few hours and then we'll head home. Tomorrow morning, bright and early, we'll likely head back to Phila. Tomorrow Molly will be admitted for a coronary catheterization and depending on how things go she will probably have heart surgery later this week. That would be open-heart, for those who read the post the other day. We're keeping our fingers crossed. Please do the same.

Molly's Big Weekend Out

Molly was nine weeks old on Thursday, October 12. We certainly haven't been keeping her in a bubble, but we have avoided exposing her to extended visits to crowded places [if only I had a good excuse to do that]. Since this past weekend was so nice, we decided to get her out and about. It ended up being a weekend of orchard visits.

Saturday we went to Delicious Orchards in Colt's Neck. Sunday to Terhune's in Lawrenceville. We got pumpkins at both places, and donuts at both places. We also picked apples at Terhune's. Lots of fresh air, a hay ride, a bee sting...all in all an eventful couple days.

Molly's Second Echocardiogram

Molly had an echo done when she was born. It confirmed what we already knew: she has a large hole in her heart - a VSD. Yesterday she had another. We've seen the cardiologist a few times, but this was the first time she wanted to do a follow-up echo.

The process was frighteningly similar to the day we went for Erin's ultrasound and learned of Molly's condition. The technician was thorough and silent and then the doctor followed up with a parallel examination. Silence. Less disturbing this time, however. I guess because we basically knew what to expect.

Right.

So once again we get just a little unexpected wrinkle. VSD, yes. A few other defects, yes. But in addition we learned that many of the problems Molly is having gaining weight can be attributed to these problems with her heart. For the last several weeks we've been doing all the things we possible could to increase her calories/volume, but it turns out that's not going to help if her heart has to continue working as hard as it is currently. She basically burns all the calories she takes in; it's like someone with a healthy heart running wind sprints all day.

Now we're faced with yet another decision - or two. First: surgery or no surgery. Second: more invasive or less invasive. The more invasive surgery is open heart surgery where they actually open up her heart and attempt to fix all of the defects. The less invasive surgery would be to band an artery that is currently allowing an excessive amount of blood to flow through it. The band would be put on to decrease the amount of blood traveling through it, and thus increase the pressure in the left side of the heart. Both surgeries have their pros and cons.

Actually surgery, in general, has its pros and cons.

52 Hours in the Hospital

So we were admitted at dinner time on Tuesday. The room was small. There was no bed for an adult. There was a pull-out chair, and they eventually secured a recliner as well, but there was nothing comfortable about this room. It's a pediatric floor. Would you assume most children who stay there are accompanied by a parent? Maybe two? Would making the room comfortable for those people make sense?

Why are we in the hospital? Right. Of course.

Molly was admitted on Tuesday so she could have a feeding tube inserted. She has not been eating particularly well for the past few weeks and this is going to help. We're going to up her intake, but distribute it over a longer period of time. It looks worse than it is. It's not uncomfortable for her and the tube can actually stay in place for about six weeks. If all goes well, she will gain some weight and some strength and by the time a tube change would be necessary, tube feedings will not be.

Worst Birthday Ever

OK so I know this blog isn't about me...

Tuesday I turned 31, and it was the worst birthday ever. It started out pretty well: my son wished me happy birthday right away, my wife gave me some excellent winter workout gear, my family called me bright and early. As soon as I got to work, all down hill.

I guess I shouldn't complain. I have mentioned perspective before in this space and this seems to be completely out of focus. But for some reason this year it really got to me. Now don't get me wrong - I practically had a breakdown last year for 30, I am not trying to hide that fact. But this birthday was much worse.

Work was just crazy stressful: a lot going on; things taking longer to complete than necessary; meetings; unreturned phone calls/emails.

On the bright side my mom sent me a delectable cheesecake. Unfortunately the mail room failed to take the time to deliver it to me, and I had to take time out of my already hectic afternoon to go over there and get it. Love the idea that "REFRIGERATE IMMEDIATELY" yields little more than a phone call a few hours later. Remind me not to put "FRAGILE" on anything coming in or out of our mail room. The cake was consumed. I had a small piece the following day.

But here is where the "Worst Birthday Ever" title was secured: we had to admit Molly to the hospital at about 6 pm. Nothing to be too concerned with; it was a planned procedure. But we got a whopping two hours notice, and we were supposed to go out to dinner. I spent the last six hours of my birthday in a cramped, old hospital room witha tiny little TV. I know, I am a whiner. More on the actual things people care about in the next post.

Permanent Picture Link

I am adding this link to the Links on the right hand side of this page. On that Shuttefly page you can find all the pictures we ever take of Molly. Please feel free to view any and all of the various albums. And if by some chance you have pictures of her, you can put them up there too.

A Little Behind Schedule

OK so I could probably work on the frequency of my posts. It's just that with the time restrictions we have these days I find myself using spare time for things like sleep, grocery shopping, landscaping, etc.

Let me catch you up on what's going on these days:

Molly is now 26 days old. She just went to the doctor this morning and she weighs 5 lbs. 8 and 1/2 ounces. She is up one ounce from her last visit.

She is on two medications, which seem to be doing precisely what they're supposed to: slow down her heart rate, and release excess fluids.

She is eating much better: that is to say, she finishes her one ounce bottles with regularity.

All in all she is doing fairly well.

Pictures

Click here for some early pictures of Molly. This is the same link found in the Welcome Home post. I'll try to post a link to recent pictures every once in a while.

Molly's First Bath

Hey every first is a big deal to us. She had a few baths in the hospital, but today was the first at home - in the kitchen sink.

Gavin's first bath was in this sink, and I am pretty sure we even used the same towel.

She doesn't seem to enjoy bath time as much as her big brother. She let out some good screams.

Welcome Home, Molly!

Today was quite an overwhelming day for all of us. Molly got to see her house, and her room, and her crazy dog, Dublin. Erin and I were overjoyed to bring her home. She's made it farther than we thought she would, and we couldn't be happier. We'll take each day as they come and do the best we can with whatever we face.

For now we're just really excited to be here, as a family.

Incidentally my T-shirt, which reads I [heart] Hot Moms, was a big hit on the maternity floor.

For a whole bunch of pictures from the hospital/our first days at home, please click here.

A Dose of Reality

We were very fortunate that Molly arrived safely. Her weight at birth was much more than expected, and she was breathing well on her own. All along the goal was to get her here so we could spend as much time together as possible. It's been a blessing.

However, the reality is that the condition with which she was prenatally diagnosed still exists. We've been so overjoyed by her just being here that at times I think we lose sight of that reality.
This morning we had a cardiologist from Children's Hospital come in for an echocardiogram. After her examination she confirmed what we were aware of all along: Molly has a fairly severe heart defect. The VSD we learned about in the early ultrasound is quite large, and there are a few other defects that we've learned about since.

Often times a VSD can correct itself. Also, in some cases, surgery can fix the defect. Additionally, there is medication that can help to slow down the effects. In our case, medication is the only plausible option. The hole is too large to correct itself. Surgery is painful and invasive, and with T18, it would only be a temporary fix. The medication can help regulate the blood flow, and slow her breathing.

She is strong. She seems healthy. All signs point to positive things. However, we always have to remember the real issue here. Doctors have indicated that her problems will present within 4-6 weeks. Honestly it's hard to think that far in advance.

Molly's Baptism

Father Pat, the priest from our church, came to the hospital tonight to baptize Molly. The unbelievable nurses at the hospital had been carrying around a post-it note with Father Pat's phone number on it so he could be called as soon as Molly was delivered. Since we were unsusre how long Molly would live, we had made arrangements in advance for this to take place at the hospital, as soon as possible.

As discussed, Father Pat came over right away Thursday night. And in a very special ceremony, in the hospital room, with most of our family (Erin, Sean, Gavin, Grandma and Grandpa, G-ma and G-pa, Colleen, Cara, Monica, and Jane - our delivery nurse) Molly was baptized at about 9 pm.

The gown Molly is wearing has been in Erin's family for something like 130 years. Over 40 people have worn it, including Erin's mom, Erin and all of her sisters, and Gavin.

The Long-Awaited Arrival of Molly Brown

Tonight, at 7:12 pm, Molly was delivered safely. She weighed 6 lbs 15 oz and was 19.5 inches long. She is a trooper.

She's a good size. Her breathing is good; her heart rate is good. So far all is well.

If things continue to go well we can take her home on Saturday morning.

Another Visit to the Doctor

We're now a week beyond the estimated due date and still nothing is happening. Molly's heartbeat is strong, Erin's vitals are all good, but Molly is not moving. She seems hesitant to get here.

We've decided, along with the doctors, to induce on Thursday morning. Hopefully by Thursday afternoon she will be here.

At this point Erin could still go into labor on her own. But we're not banking on it.

Off the the hospital Thursday morning.

Molly's Due Date

Today is Molly's official due date. We've been going to the doctor every seven or eight days the last few weeks to try and determine when she will make her appearance.

The visit today revealed she is in no big hurry to get here.

We go back in seven days.

My First Triathlon

Ok so you're probably trying to figure out what my first triathlon could possible have to do with Molly? It sort of ties in to the previous post, which I believe I started by posing a similar question. The answer is also similar: THERAPY.

Also mentioned in the previous post is disdain I had for turning 30. I have since gotten over that - you know, perspective and all. But what that did was turn me on to a whole new form of exercise. Actually even before that, my friend Cyrus, a diabetic, convinced me to ride in a charity bike ride for the American Diabetes Association. I didn't even have a bike and the ride was 30 days away. So I bought a bike and started pedalling. When the ride was over I was looking for something to keep me motivated (since in the back of my mind I knew 30 was coming). I decided on triathlon.

Looking back I have no idea why I didn't just keep riding my bike? Why add two more sports? I was never a fan of running, and I couldn't swim more than 25 meters without resting. In hindsight, the idea never should have gotten off the ground. But it did.

I started training in the winter. In February. Coincidentally, a few weeks into training we got Molly's diagnosis. At this point there were a lot of things on my mind, and a lot of things on my plate. The first decision I made was that I wanted to spend as much time as possible with Erin and Gavin. The second decision I made was that I wanted to go through with the triathlon. I knew that in order to do those two things I would have to give a couple things up. That's when I decided to take a leave of absence from my duties as a volunteer firefighter.

Well after I got squared away with my time management, a funny thing happened: I began to look forward to training sessions. Instead of a 2 mile run that I could get done in 15 minutes or so, I started to go on 5 mile runs that took closer to 45 minutes. Sometimes I'd break up the run with a brisk walk that would drag it out to more like an hour. Bike rides easily climbed in to the two hour window. And I was going to the gym six days a week often times. These sessions gave me time to think. They helped clear my head. And they often made me feel better.

So finally, today, I completed my first race. I only slept for three hours last night, and that will likely be printed in the Trenton Times tomorrow, since my wife told a reporter. But I got there bright and early this morning, ready for action. My goal was to finish. My secondary goal was to finish in less than 90 minutes. I crossed the finish line at 1:26:59, and immediately felt a sense of accomplishment. It even choked me up a bit to see my very pregnant wife, and very excited son at the finish line, cheering me on. They are my motivation, and my support system, and I wouldn't have even gotten out of bed if not for them. Not just this morning, but most mornings. And they were really happy for me.

It didn't take long for me to start talking about how bad my time was. And how much better I was planning on doing next time. I just need more therapy.

A Golf Outing

How is a golf outing relevant?

Today was the 1st Annual Emma Marie McCabe Golf Classic. This event was organized by a family who lost a child last fall, to the same disorder we're currently preparing for. October 3, 2005. Those of you who know me well may recall I was preparing to turn thirty and not taking it well. How incredibly ridiculous of me! This family was coping with the loss of a child who had only been born three days earlier, and I was complaining about a number. Perspective is a funny thing.

But here is something else: October 3, 2005 was less than 10 months ago and these parents are out and about, socializing, functioning, thriving. Their grieving, of course, but they're ok. I have no idea how we're going to handle this experience. I have no idea what's going to happen with Molly once she is born. We don't anything. Every day from now on has more of a question mark than any previous day. But now, after seeing Emma's parents up close and personal, I do know this: we will get through it together.

The golf outing was organized to benefit the Trisomy 18 Foundation. I learned about the event through the newsletter you receive from the Foundation as a member. Erin and I became members right after learning of Molly's diagnosis. I can't begin to articulate how helpful this site has been. At the beginning it served as a place to learn, then it became a place to share, and it will eventually become a place to heal. For Erin, the access it affords to other mothers with similar experiences has been an invaluable resource. The message boards and support group has been her main source of therapy. And it's been a huge help.

If anyone is interested, I encourage you to visit the site. You can learn how friends and family can help. You can sign up to receive a newsletter. You can donate to the cause and insure that this site will exist for the next family that needs it.

Also, an enormous thank you to the friends, family and co-workers who participated in the event today. Despite the heat at first, and the subsequent torrential rainstorm and accompanying thunder and lightning, the event was a huge success. Fourteen people played golf as part of the "Sean Brown" group, which became a big joke at registration as all 14 were registered as me. And one additional person joined us for dinner (which actually ended up being a small gathering at Conte's while a few of us die-hards closed down the golf course). I hope you all had a good time, and realize how important it is to Erin and me that you were willing to be part of it.

Things That Help, and Things That Don't.

We're currently on a vacation that originated solely to get us some time away from day-to-day and all that entails. It's been relaxing. It's given us time to think. It's given us a chance to be together, just the three of us. We've spent the mornings alternating between walking slowly on the beach and running maniacally down the beach trying to wear out Gavin. It's too cold to actually "go to the beach," but it's a nice place to spend some time.

Between the 12 hour drive and the down time on the beach, we've spent a few minutes discussing the subject that serves as the title of this post. We're going through a very difficult process that most people are not able to comprehend. Before the doctor said it to us, we'd never heard of Trisomy 18. We don't have a lot of friends who have lost children. We don't hang out with therapists. So it's not unusual that in casual communication people find themselves at a loss for words.

There is no guideline for what helps and what doesn't. But there are certainly things people can say and do that will help. And conversely there are things people can say or do that won't. In a previous post I linked to this site. There are some good tips there.

Rather than list a bunch of things that do or don't help us cope with what we're going through, it may be more useful to direct people to this page (same site, different page). Check it out if you're curious.

In the meantime, remember this: the fact that you recognize that there may be something that does or does not help shows that you care. Caring is what we need most. Just making an effort means a lot.

"We" and "Us"

If you've been reading the previous posts, you've noticed that they're all published by me and thus written in my voice. You may have also noticed I refer to "we" and "us" when discussing the decision-making process and/or the status of the pregnancy.

I think it's clear to say everyone recognizes that I am not actually carrying the baby. People may also be wondering how much input a person not carrying the baby can have on the decision.
This is an incredibly strange position for a man to be in. All the fathers out there can identify with attempting to sympathize with their partner while she does all the hard work: gaining weight, losing sleep, having their body taken over, not to mention actually delivering the baby [if you've only witnessed child birth through the "real-life" movie they show in Health class, you have no idea. The nurse's insisted on putting a chair behind me during delivery because it's not unusual for dad's to pass out. Fortunately (or unfortunately) I've seen worse and was at no risk of passing out. Some of you out there - and I have a few of you in mind - make sure you know precisely where that chair is because you'll need it]. With any pregnancy there is a fine line between identifying and annoying. As they get more pregnant, they get more irritable, and it's perfectly within their rights. This is when you need to be careful, as a man.

The point here is this: I recognize that I can't possibly know what my wife is feeling just being pregnant. There is no way I can attempt to know what she is feeling as she carries a baby with a potentially fatal condition. My goal in this process is simply to identify and support. I hope I am doing a good job.

And as for the decision-making process, for the curious, I went full-circle. Erin knows this now so I guess I can share it. Mt first instinct was to end the pregnancy at diagnosis. I didn't share this at the time. After countless conversations with Erin, where my sole intention was to present both sides of the decision, I decided that what I really needed was to meet the baby. Erin decided this for herself as well. Sitting back and letting Erin decide was always my intention, I only offered input when asked. In the end, it's just fortunate we both saw things the same way. It made an incredibly tense time in our lives more manageable in that we had no tension between us.

Thank You, All.

We can't thank you all enough for the genuine care and affection you have shown us over the past several days: The replies we received to our email of March 18, the phone calls, the visits, all of the kindness people have expressed, we can't thank you enough.

It's only going to get more difficult for us as time goes on. We can only hope everyone continues to be so supportive.

Making a Decision

We talked to a lot of people. We asked a lot of questions. We read a lot. Gathering information, hearing experiences, and getting opinions was helpful, but it certainly wasn't going to make a decision any easier. In fact, it didn't do anything for the decision. That's not meant to say we didn't value what we learned, it just, in retrospect, had no impact whatsoever on our decision. Ultimately we made that call based on our opinion of ourselves.

My mantra throughout this process has been, "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." We had no choice but to make the decision and it ultimately had to be made based on what we needed to do to move on with our lives.

For both of us, after much deliberation, what we needed to do to move on was meet the baby.

Our options are limited to begin with, but determining we want to meet the baby narrows those options to two: induce before 24 weeks, go through labor, and deliver a premature baby with little chance of being born alive; or carry the baby as long as possible (hopefully to term) and deliver what we hope to be a viable baby. In those terms, for us, the decision was clear.

Tonight we met with a doctor who specializes in delivery of sick babies. It seems he was under the impression that our decision was for an induction in the next few days. What we actually wanted to do was discuss our options with one additional doctor. After a brief, late evening meeting in Cherry Hill, we had finally come to an absolute decision. Carry the baby to term.

We decided that we wanted to let nature take its course and, if we're lucky, we'll get to spend some wuality time with our baby. For us, as soon as we made the decision to carry the baby to term, we could start spending time with her [the doctor in Cherry Hill was actually the first person we asked to tell us the sex of the baby].

Tonight, on the drive home from Cherry Hill, Molly Elizabeth got her name.

A Note to Our Friends...

After a few days of alone time and a great deal of reflection (not to mention a too-long-not-to-be-noticed absence from work) we've decided to send the below email to our friends and family:

Friends,
Please let me apologize in advance for providing this information via email, but I need to ask you all to respect my desire to avoid discussing this repeatedly. Erin and I are tremendously appreciative of the support we've received thus far. I'll attempt to bring you into the loop and express my sincere gratitude for all of your kindness.

This past Monday we had a comprehensive ultrasound and an amniocentesis. The results of the amnio revealed that the baby has an additional chromosome #18. Trisomy 18, the name of this particular chromosomal disorder, is quite severe. Among other things, the ultrasound also revealed a ventricular septal defect: an opening between the lower chambers of the heart which prevents the heart from pumping blood correctly. This particular chromosomal abnormality combined with the severe heart defect (which is not an unusual symptom of Trisomy 18) create what our doctors consider a lethal condition.

Again, I apologize for sending this in an email; it's just easier than talking about it. I promise to try to keep you all informed.

The support of our friends and family will get us through this. Thank you.

Sean and Erin

In retrospect, we should have been more clear on a few points. 1) If you have questions, please ask us. It's not that we don't want to talk about it, it's more that we don't want to explain the scenario over and over again. 2) Please act normal. It was difficult enough to handle the news on its own. This discomfort was compounded when it was clear there were people who thought it better to ignore us completely, than say the wrong thing.

I can certainly respect this. Here is what the Trisomy 18 Foundation recommends.