"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.