Well, well, well, fancy meeting you all here!!! Let’s first take care of the elephant in the room…yes, I KNOW it has been quite some time since we have blogged. Trust me, we have heard you. The title of this post is so true though. No news, is good news. We have been busy with regular old life. No fear though, we have plenty of wonderful new things to report. So, in a nutshell…here it goes…

I started getting messages in late December like “hey, you forgot to blog this week”. Then this past month those messages were more like “I hope everything is ok. I see you’re not blogging. I’m here for you if you need anything”. Let me start this blog out by saying that Brooklyn is terrific. And by terrific of course I mean a mini person that screams at ear piercing volumes for no good reason, rips the glasses off of peoples faces and tries to stab them with them, and that likes to grab the diaper out from under her mid-change to shake like a rattle (clean or dirty). That’s our BroRo.

The simple reason we haven’t blogged is that we’ve just been tremendously busy. I remember telling a fellow blogger about my concern over the large number of blogs about infants with HLHS vs the smaller number of blogs about older kids. I was told it was because they simply got busy with being parents and working and life became…normal. I thought to myself at the time how AWESOME it would be to be busy and how AWFUL it would be to be normal.

Well we are now busy as hell, and it sort of sucks. And our lives now have routine and become pretty normal, and it’s great. Funny how that worked out.

In regards to BroRo and her health, we’re focused on three things.

1) Her heart is of course the biggest concern of all. On this front, we are winning. We really really are. She has had visits every other month with her local cardiologist and had echo’s at each one. Each time they tell us that things look terrific. On the most recent visit, we were told that there is a mild tricuspid leak (which she has had all along), but nothing they’re concerned over. Even better is the fact that they measured her ejection fraction at 51. This is up from previous visits in the 40′s. The ejection fraction measures the percentage of blood that is pumped out of the filled left ventricle with every heartbeat. A normal (you or I) ejection fraction is between 55 and 70. Her’s being at 51 is a good sign.

2) Her eating however has not improved. Brooklyn still gets 100% of her food and medicines through the G-tube. She gets a home visit twice a week from an occupational therapist, but things haven’t clicked yet. She does not like anyone else putting things in her mouth, she does not like cold or hot in her mouth, she does not like the texture of any food in her mouth. She will occasionally take water from a bottle, but will not take any formula or anything else. Once something is in her mouth, she will swallow it (with the occasional gag), but its a pretty tough battle to get to that point. We continue to be told that we need to just keep plugging away at it and it will come, but there is no timetable, and no proven path to success. It’s a trying situation, one that Meghan has certainly had her fill of (she’s very tired of answering the “how’s the feeding going?” question), but compared to the alternative…

3) As you may remember from previous blogs, Brooklyn was a puking machine. She would throw up about 25% of her feeds each day and pretty violently at that. Well that only got worse in December and January. She was throwing up about 5-6 times a day. The problem with this, outside of her discomfort and our massive piles of laundry everywhere, is that she wasn’t gaining weight. None. She did not gain an ounce from Halloween through the Superbowl. Not good. Then about three weeks ago we started mixing some heavy oatmeal in with her feeds. The thought being that this would settle better in her stomach. The good news is that it has started to work. She now only throws up one or two dimes a day and as a result has gained some weight over the last three weeks. The not great news is that the pump gets clogged up while trying to push oatmeal through, so we are now feeding her manually, which means my hand or Meghan’s hand or Grandma’s hand is the pump. It’s a very awkward and uncomfortable feeling to be forcing food through a tube from a syringe in my hand, direct to her belly. Especially when she groans and is obviously full, but needs to keep eating. Making it worse is that she now sees the tube and associates it with an uncomfortable full belly and tends to fight it from time to time. All that aside, we need to do whatever we can to make sure she keeps growing until she can eat on her own.

So that’s Brooklyn’s health over the last two months. Heart is good. Feeding is bad. The jury is out on her weight gain.

Aside from the medical stuff, Meghan and Brooklyn and I have had a very busy few months. I will fill you in via videos and photos below, but the highlights are:

1) First family trip (not to a hospital) to Miami

2) Baby’s first Christmas

3) BROOKLYN’S FIRST BIRTHDAY!!!

I will try and blog more often moving forward and thank you for continuing to check in.

Hello faithful followers! It’s been sometime, but boy have we been busy! I am writing this on New Years Eve at 10:30pm, waiting to ring in 2012 with Tucker (Brooklyn is sleeping and Tommy is working), and I find myself watching Dick Clark’s Rockin’ New Years Eve thinking about the year that just passed. Yes, PitBull and Nicki Minaj have that “reflective” effect on me. It goes without saying that this has been an eventful year. Before we recap though, let’s give you a quick look at December…

I was surprised at how emotional of a day yesterday was for me.

I took the day off from work to drive to Connecticut to go with Brooklyn, Meghan and Meghan’s family (parents, siblings, aunts, cousins, nieces and nephews) to the first annual “lets get together before Christmas so we don’t have to travel to someone else’s house during Christmas” event. We had a packed car with Meghan’s Mom & Dad, myself, Meghan and Brooklyn. It takes about three hours to get there and I spent almost the entire drive talking to my father in-law. During car rides he either talks (he’s a talker) or sleeps. It was a long talk about nothing of significance.

We arrived first at the party, so after a little while I decided to sneak out to see a friend who lived only about 15 miles away. I had heard that his father had passed away on Friday and I wanted to be with him, and to share my families thoughts and wishes with him and his. I got to the house, rang the bell and walked inside. It was dark and it was quiet. It was just me, my friend, his mother and one of their family members. We talked for a short while and we hugged. My friend was hanging in there, his mom was obviously and justifiably in tough shape.

I got back in my car to go back to the family holiday party. I got about 4 blocks and I started to tear up. I called my father just to let him know that I loved him and I asked him to hang around for a while.

When I got back to the party it was a full house. There were a lot of food and drinks being consumed, people were laughing and yelling (Italians), and a pile of kids were running around and playing. My daughter and my wife were happy and smiling. We sat down at a long table and ate and told stories and laughed. We smoked some Cigars and pseudo-argued. It was what i’d hoped it would be.

I had gone from a scene at one house to a totally opposite scene at another. It was the same time of year in both houses. Physically they were only 15 miles apart. Emotionally they were so much further.

That night while driving home after the party (with four small people sleeping in the car), I kept thinking about time.

I was so glad to have spent it the way I did. I spent time talking to my father in law, time with family, time to call my father, time to see my wife and daughter smile, and time with my friend during one of his hardest times. It was all time well spent.

It seems like people (myself included) are so busy that they wait until holidays or birthdays or anniversaries to spend real time with the people they like, love and value. Waiting until these events though is such a mistake.

When it comes to time, you are allowed to decide how to spend it and when to spend it. You just don’t ever get to know how much of it you’ll have.

We are leaving tomorrow to take our first family vacation. We are going to Florida and I couldn’t be happier to spend the time with my family.

And while it’s about three weeks early, i’m setting my new years resolution (and beginning it) now.

I want to make time and I want to spend it all.

Christmas is coming, Christmas is coming!!! I love this time of year for a few reasons. 1) A Christmas Story, Elf, Shrek Family Christmas, shall I go on??, 2) I get to work much less and hang out with Brooklyn much more, 3) we get to revive old traditions that we have been waiting since last Christmas to do all over again, and 4) we get to see old friends and family who we don’t get to see throughout the year (probably b/c I am working). This will be Brooklyn’s first Christmas and our first in our new home. We really couldn’t be more excited all around!

We have so much to be thankful for today. What are you thankful for?

A Happy Thanksgiving to all.

If you are looking for a BroRo update, you’ll get more details in the next posting. I will tell you that she is doing terrific. She’s happy and fat. She’s my kid.

Today’s blog though isn’t about her. It’s about me.

I like a lot of things in this world, but I only love a few.

I love my wife, my daughter and the rest of my family. I love to laugh. I love to earn. And I love Penn State.

As many of you know, I am an alumnus of Penn State. I went there when I was 19 intending to learn the law and become a lawyer.

Neither happened.

By the time I left though I learned something far more valuable, far harder to learn.

I learned pride.

The year before I got to Penn State was a bad year. I was 18 years old, was living in Las Vegas without any supervision, and was going the wrong way in a hurry. I had multiple bad vices, had some bad people around me, and was in an overall toxic situation. After 1 semester I had a 0.4 GPA (4 F’s and 1 D). Early on into my second semester I had a friend from high school come to visiti me. He hadn’t seen me since the previous summer. He took one look at me and how I was living and asked me what the hell I was doing. He encouraged me to leave. I took his advice and looked for somewhere else to go. I applied as a transfer student to several schools. They all said no. I was looking at heading back home as a college drop out with very limited options. Then I got a call from that same friend. He had returned to his school and spoken to an admissions counselor about me. The admissions counselor had agreed to talk to me on the phone. His name was Jerry, and he was an admissions counselor at Penn State – Schuylkill Haven, a satellite campus of Penn State with less than 300 students on-campus (smaller than my high school). After a conversation and some letters written, Jerry and Penn State – Schuylkill Haven accepted me as a transfer for a probationary period of one semester.

When all other schools said no to me, Penn State said yes and gave me a chance.

My first semester there I made the Dean’s List. My third and fifth semesters there I worked with the student radio station and got to be on the same sideline with Joe Paterno while we were #1 in the country. My Senior year I helped other students to raise over 5 million dollars for children with cancer (THON) in the largest student run philanthropy in the country.

I was proud of who I was, who I was with, where I was, and what I was doing. I carried this pride with me when I left. I carry it still.

Last week my pride was rocked to the core. I was physically sick, I was angry and I was hurt.

You all know the story by now about Jerry Sandusky, his terrible actions (I assume his guilt), and the lack of leadership.

I want to share my thoughts with you.

Jerry Sandusky is not Penn State. Gary Schwartz and Graham Spanier are not Penn State. They worked at Penn State.

These men are cowards. These men are liars. And in the case of Sandusky, should he be found guilty of the charges, he deserves pain and fear and torture. His “prison justice” should not be swift.

Again, they are NOT Penn State.

And that brings me to Joe. Joe IS Penn State.

Joe donated millions of his own dollars to provide the library I studied in. Joe’s successes on the field created the exposure necessary to transform for an agricultural school into a leader in technology, engineering and business. Joe spent 61 years at Penn State teaching, graduating players, and setting an example by kicking bad apples off of his team.

Without Joe, we are not Penn State. We are Rutgers.

I look at his body of work, and because of that I can say without hesitation that I am still proud of Joe.

But Joe was wrong. And Joe has been wronged.

Joe followed legal protocol. As a citizen though, sometimes that’s not enough. Joe knew better. He was wrong.

In firing Joe immediately despite his resignation at seasons end, while not firing McQueery who actually saw the event, Joe was wronged. On Saturday when Joe Paterno’s image was not displayed once on the big screen at Beaver Stadium during highlights of the past 50 years of football, Joe was wronged. Yesterday when the Big Ten took the name Paterno off of it’s Championship trophy, Joe was wronged.

I have a closet full of Penn State shirts, hats and jerseys and I can’t wear any of them just yet. It’s not that i’m not proud of Penn State anymore, it’s that i’m still proud.

My continued pride makes me angry. Angry when I hear people in the media talk about how terrible a place Penn State is. Angry when people don’t read the details and lump together Paterno and pedophile in the same thought.

And angry when I look at the logo and think that the place I came to know as perfect, is no longer and never will be again.

I am angry and I am hurt, and that’s because I am still proud.

I have watched far too much Sesame Street lately. Brooklyn has this DVD of “Elmo Singing With The Stars” and when she watches it she pretty much turns into the baby I always wanted (a quiet non-emotional zombie child who wants to be left alone). The DVD has a number of songs that involve letters. Sheryl Crow with the letter “I”, Alicia Keys with the letter “Y”, and a bit I find REALLY funny with Ricky Gervais and the letter “N” (you can watch that by clicking here: Ricky & Elmo. Yes, it really is pretty funny.

Anyway, I’ve decided to steal a page out of the Sesame Street book and have todays post feature words that start with the letter “D”.

DOCTORS – We went to Boston on Tuesday and Wednesday this week in order to get her PEG tube taken out, and a Mic-Key button put in. The idea of this is so that we can finally give her some thicker foods to help keep her from throwing up, and if she were to pull the tube/button out, it would be something we could easily fix instead of rushing to the hospital/anesthesia/endoscope, etc. Also when she does take all her food and meds by mouth, we can pull this tube out easily (even at home) and let the hole close on it’s own (like an earing) so no more feeding related surgery. Anyway, Tuesday’s visit was pretty awesome. We visited with our cardiologists who told us that Brooklyn’s heart is doing as good as they could expect for a HLHS kid. They called her a “superstar” and were so glad to see that she has big fat cheeks, legs and even some baby boobies. She is in the 50th percentile for height/weight. They let us know that her heart was again functioning at or above pre-Glenn surgery levels. We may not have told you, but after the shunt cutting episode in July, she went home with depressed heart function (and it stayed that way for at least two local doc visits – we just got the “improved” news this week). They gave us the green light to let her “cry it out” (which we have yet to try) and even told me that it’s GREAT for me to continue to come up from behind her and scare her with a yell (something i’ve been doing for weeks – it gives her quite a shock and I find it funny). Ok maybe they didn’t say it was great, but they said it was ok and then looked at me like I was an ass. So that was Tuesday. On Wednesday we came in for the procedure. It took place in the Cardiac Catheterization lab and was scheduled to take about 10 minutes. In short, they were to put Brooklyn under general anesthesia, do an endoscopy (tube with camera attached down the throat), cut the PEG feeding tube, grab the “stopper” that holds the tube in place from the inside, and pull it back from the inside and up and out. We went in at 8am. They started drugging her up at 8:45. She was hammered by 9:00 when the doctor doing the procedure (our GI doc in Boston) walked in. Our doctor told us for the thousandth time that it would be an simple 10 minute procedure (they told us the Glenn was “easy” too) and that we should get coffee and come back and it would be done. So we left and got coffee. We got back out 9:10. They were still working, so we sat on a bench in the hallway. 9:15 came and went and we didn’t think much of it. 9:30 came and went and we were making stupid chit chat (the kind you know is forced to pass time). By 10:00 we had stopped talking. Then 10:30 came and we were pacing. Now we were thinking 10 minutes had turned into 90+ and wondering what could have gone wrong (the forms we had to sign presurgery included everything from a torn trachea to internal bleeding to death). At 10:50 our doctor came out. I said “How did it go?” She said “Well, It went.” Not really the response I was looking for. She then explained the events to us. In short, they couldn’t get an IV into Brooklyn for the first 10 minutes so they ended up sticking her in the head (I hate this) to get one. Then they went down with the scope, cut the PEG tube, started to pull the stopper back up and – WHOOPSIE – the scope dropped the stopper into her belly. Like a video game crane game they spent the next hour trying to “fish” out a foreign object from her stomach. They finally got it out safely, put in the Mic-Key button and called it a day. The doctor went on to say “They told me if something weird was going to happen, it was going to happen to this kid”. No shit. Drama aside, we got what we went in for and she woke up healthy with her new button.

DRUGS – Brooklyn got the first round of her anesthesia through her PEG tube. She was awake and lively and then they put in the drugs and told us she’d be out in about 10-15 minutes. At two minutes in, she stopped with the chatter, but she was still sitting up in the crib on her own. At five minutes in, she was awake, but couldn’t keep her big fat head up. They told me I should pick her up and hold her head which I did. Once I had her in my arms she turned and looked at me and just stared as if to say “I love you, man”. She did this half a dozen times, it was hilarious. Then by about minute 8 she was almost out. You could tell she couldn’t focus on anything, couldn’t keep her head up and was as close to asleep as you could be while still being conscious. So Meghan walked over to give her a kiss good by and out of nowhere Brooklyn straightened up and screamed “EEAAAKKKK!!!”. Meghan jumped back about 4 feet and the nurses and I (along with Meghan) laughed uncontrollably. It was the funniest thing i’ve seen from this kid so far.

DUCK – This week was also Halloween. Halloween is an old latin word that means “if you ring my bell after 9, i’m gonna get really quiet and make you stand there all night”. This was Brooklyn’s first Halloween. She can’t walk, and she can’t eat candy. Despite these minor issues, we took her trick or treating anyway. Brooklyn payed homage to her friend Ducky and dressed up like a Duck. It was very cute and the pants that came with the costume made her look like Nanny from the Muppet Babies. I dressed up like a tall guy in a sweatshirt. Meghan dressed up like the dwarf wife of a tall guy in a sweatshirt. We hit about six houses (all our neighbors) and then came back home. We are lucky to have some good candy neighbors. No homemade treats, pennies or raisins in our hood. Photos below.

DINE – Yeah, so hold on to your hats here. Brooklyn had her best week of eating yet. She ate her whole bowl (a very small bowl) of sweet potatoes. She did this three times. Once with OT, once with Meghan and once with me. They key has been to distract her with TV so she doesn’t think about the food in her mouth. Then she chews (not sure why, only two teeth), moves the food around with her tongue and swallows. This is a big deal. She is moving in the right direction.

DESCENDENT – While we were in Boston on Tuesday we got word that it was Brooklyn’s uncle’s birthday. He lives in Rhode Island, so after the cardiac workups we took a drive down there. For the first time Brooklyn got to meet a ton of her family (cousins/aunts/uncles) and a guy named Fish. They are a large group of small people and Brooklyn did really well with them (she usually gets upset around groups). She is the youngest on this side of the family, but has some relatives close in age she will hopefully be able to play with more in the future. Unlike most families with loud kids, in this family the older you get, the louder you get. Brooklyn was probably the quietest one in the room. All kidding aside we really enjoyed this visit. There is no better way to spend time then spending it with family.

DONE – My coaching responsibilities for this year are over. I will miss it, but i’m relieved to have the extra time. We went 3-4 and lost our last game on an extra point. I will miss most of my fat little 7th and 8th graders. It was a fun filled year in which we had some good wins, some bad losses, and everything from concussions to in-practice diarrhea to a kid calling himself Jesus.

DAFT – Yeah, I had to use the Thesaurus on this one. Daft is another word for Crazy. My wife has always thought I was crazy, but especially this week when I bought a cabin. It’s a pretty good size cabin and is on about 1/2 acre of waterfront property. I picked it up really cheap and don’t know what i’ll do with it yet, but it wasn’t a deal to be passed up. The fact that it doesn’t have running water isn’t a deal breaker for me, since cabins have windows made exclusively for peeing out of. Anyway, at a bare minimum it will get a poker table and a bunch of chairs put in it so let me know if you wanna come visit and get dealt in.

DEMAND – We got some bad to worse news this week when we heard that a friend of ours has cancer, and that cancer has spread. So when you’re doing your prayer thing, don’t ask for help for our friend, demand it. He’s one of the good guys. Go win the fight B.B.

DATE – If you’d asked me a year ago about Brooklyn’s first birthday, I’d have told you it was very questionable. Well now we are actually planning it. It’s gonna be a blowout and we want all of you to be there. Please save the dates 2/16-2/19 of next year. We will email you individually with details as we get closer.

DOWN – 296. Down 18.

DONE. New videos and photos below.

Ok, ok, I hear you all! I honestly don’t have much to blog about and considering this has been my first day off in over 21 days, it wasn’t exactly the first thing on my list to get accomplished, BUT…
Here are the highlights:
Sleep – or lack thereof. Patterns are a changing, oh yes, and then there is teething! She is all over the place lately, and we have literally just sent an e-mail out to our Boston cardiologists to see if the “cry it out” method is appropriate for Brooklyn, b/c we have run out of ideas. She does really well in the car seat, both in the stroller and in the car itself but I don’t want to get into a habit of driving around for hours on end just for her to wake up and start screaming during the transition. Anyway, any other kid I would leave in the crib and let cry till their too tired to produce tears. Unfortunately, the presence of HLHS has made me (forced me into) exactly the parent I NEVER wanted to be in regards to many things, including sleep discipline. Oh well, hopefully we get the go ahead from Boston to let her scream till her little heart is content!
Doctors – We have upcoming appointments with Albany cardiology this week, and have finally re-scheduled the G-tube procedure for November 2nd.
Eating – I honestly don’t have the time or the energy to get into this right now. It is what it is, and we are working on it. )
Visitors and trips – Brooklyn was finally able to meet some of her many cousins this weekend. We had the pleasure of hosting the Johnston Damaso’s for about 18 hours this weekend. Between our schedule and theirs it was all we could squeeze in, but WELL worth it! Along the same lines of meeting new people and seeing new things, Tommy and I had our 4th Anniversary this past week. As a gift, Tommy is taking all THREE of us to Miami in December! We are VERY excited, and of course once the initial excitement finally wore off (more about buying a bathing suit for Brooklyn than anything!), I became equally as anxious about traveling with her. Another thing we will clear with Boston when we go next week, but something to look forward to for sure. Lastly, Brooklyn was introduced to the Skidmore Field Hockey team this past weekend when we had a team dinner at a local athletes after a game vs. Union. She had a great time meeting all the girls, although all at once was a BIT overwhelming!
That’s about all I have to update for now. Enjoy some pictures below!!!

I don’t know about all the blog readers in other areas of the world, but for those of you here in the Northeast, you got to see firsthand today just how terrific the autumn weather is. I’ve lived and visited a lot of different places and nothing compares to a day like today. The weather was in the 60′s/70′s, the sun was out, the wind was blowing, and the leaves were falling. No traffic, no smog and everyone spoke english (for those of you who think Florida and California top this). Of course we now have to pay for a day like today with five months of cold white hell. Overall it’s a trade off i’m wiling to make.

What made it even better is that I learned today that my kid loves the fall weather. When we were inside she was a whiny pain in the butt. As soon as we got outside though she was wide-eyed and smiling. She was quiet (!) except for when she would laugh at people going by. How cool is that? My kid likes the fall AND likes to people watch! If she grows up to like pistachio nuts and Samuel Adams Octoberfest then we will REALLY have fun together each fall.

We were pretty lucky this week and Brooklyn’s cold broke for the most part. She no longer sounds like a hungry bulldog and her cough seems to be in the rearview mirror. We are planning to reach out to Children’s Hospital this week to see about rescheduling her tube removal. No, she is not eating by mouth yet. This is really a change in equipment to prevent her from pulling the tube out. As far as progress she is making some in the form of the pacifier which she is FINALLY taking again on a limited basis. It is a small step in the right direction, but it is a step none the less. Any progress at all is welcomed!

Guess what else we got this week? A tooth. Two actually. They’re not in all the way, but on the bottom you can see and feel them. They are sharp and look to be white.

We are also REALLY excited to report today that our friend Marisa finished the first of two marathons that she is running with BroRo as her inspiration. They are both a couple of tough broads. Marisa is running 52.4 miles in two cities this month and in doing so is working to raise awareness and money for Sisters By Heart (a group we are very fond of). You can follow her via facebook at: http://www.facebook.com/event.php?eid=158952454184115 You can also learn about and contribute to Sisters By Heart at: http://www.sisters-by-heart.org/

The past two weeks also included some other good stuff. I had a birthday. Meghan had a birthday. And Penn State beat Iowa. “WE ARE….”

I didn’t have to be reminded what this week was, I already knew. I haven’t forgotten, and never again will look at October 7th, of any year, the same. Yes, it is the day before my birthday but that’s not what I am talking about. October 7th 2011 is the day Brooklyn was diagnosed with HLHS. Don’t worry, I remember it like it was yesterday.

You might remember from previous blogs that Meghan and I met a family the last time we were in Boston that had a baby born with HLHS and with the same name as our daughter…Brooklyn. We got to meet her parents a bit and share some of the same stories. They were just like us, same heart issue, same feeding problems, same name, only about 3 months later.

Meghan found out this morning that the other Brooklyn didn’t wake up this morning. I don’t know the specifics, but it hit us like a ton of bricks. I think she was about four months old.

Please keep her parents and her siblings in your thoughts. Meghan and I hope they find the strength to get through each day, starting with today.

First let me tell you something about me, then i’ll update you about my kid.

ME: I have had a very self indulgent decade. I’ve almost never said no to myself. I have pretty much visited, seen, done, bought, and experienced anything I wanted to.

I have also eaten anything I wanted to, in massive quantities, and it has finally caught up to me.

The proof is in the numbers. Ten years ago I weighed 195lbs. Last week I weighed in at 314lbs (thus the PI reference). That’s 120 lbs over 10 years. Thats a pound a month for a decade. I have essentially gained my wife.

Now over these ten years i’ve seen what’s been going on. I have a mirror and I’ve gone out and got new clothes. I’ve thrown away the receipts for the near $50,000 I’ve spent on fast food alone (sickening). I’ve talked about losing weight and even made a few lame attempts at correcting my eating patterns, but i’ve never really cared enough to follow through.

I do now. Brooklyn has given me a reason to care. I need to keep up with her. Literally and Figuratively.

Figuratively, she has fought and perservered. She does her best with a challenged heart. I on the other hand have quit more times than I care to mention. I’ve failed, and worse still I have intentionally damaged the good heart I was blessed with.

Literally, I’m starting to see myself having trouble keeping up with her as well. Lately I have been home during the day watching the baby. When I pick her up or carry her around or upstairs, I feel it. I’m out of breath, I sweat like an animal, and I have pains daily in my hips, ankles, knees and back. To top it off, my blood pressure which has been perfect my whole life is no longer perfect.

That all ends right now.

I have put myself on a diet, added in a simple exercise routine to do daily, and found a “sponsor” to talk to on the regular to keep me on track. I also have scheduled a physical with my doctor so I can get a clear picture of where i’m at right now. I’ve set a goal of dropping 50 lbs by Brooklyn’s 1st birthday (144 days from now) and when you read future blogs from me, I will post a number at the very end. That will be my current weight. Ok, that’s it about me.

MY KID:

As Brooklyn goes, she has overall been doing well. She is sick right now with a cough and some nasal congestion. Sometimes when she breathes she sounds like a bulldog. It’s cute, but not funny. What is really not funny is how uncomfortable she is when she’s tired. Sunday night she would cry solid for 3 hours, then sleep for 30 minutes then cry for 3 hours, sleep for 30 minutes. This is how it went from 8am to 8pm. I took her to the doctor and he said just to keep the humidifier on and to watch her. He said if she gets a fever to call him right away as pneumonia would be REALLY bad for her. So far no fever, and she even was pleasant today and slept pretty good. Fingers crossed.

Besides the obvious, we also want her to get healthy because next week she is scheduled to go to Boston and get the PEG tube taken out. No, this doesn’t mean she’s eating orally. Damn. As you’ve probably seen, she has this big old tube coming out of her belly. She now likes to grab it and tug on it. It’s only a matter of time before she yanks it out and we have to rush to a hospital, educate the local doctors to her condition, and put her under in order to put it back in (otherwise no food or meds for her at all). To try and get ahead of this, we are going in on Tuesday next week to get a cardiac assessment done. If she checks out (which we expect she will), they will put her under anesthesia next Wednesday and go endoscopically to her belly, remove the tube and put in a Mic-Key button. This is sort of like a gas tank cap for her belly. She shouldn’t be able to pull it out, and it won’t hang or get in the way anymore. We are told this is a ten minute procedure (even though we will be in Boston for two days). We will keep you posted on that.

Here are some pictures and some videos of Brooklyn from the past week or so:

It’s cold! Literally, in one day the seasons have changed! I actually love fall and am only complaining because I wasn’t ready! Poor Brooklyn has sleeveless and short sleeve onesies only in the “ready to go” drawer! I need a few days (or weeks in my world) of warning so I can get out the warm clothes! Truth be told though, I LOVE that she gets to wear feety pajamas again, she is so darn cute!!!

***I’d like for this weeks blog to help my wife and I. I will need your help to do that. Please read the brief blog below and help us settle things via the comment section (this could very well end my marriage)***

My wife is short, I am tall. I can do math in my head, she stops counting when she runs out of fingers. She can run or jog, I can hardly walk. There are very few things we have in common or do the same.

This has now spilled over to raising our kid. We have a difference of opinion and priorities with BroRo. I have listed five areas below. Please take a look at them and comment. Please list the number, and who you think is right (This could very well hurt my marriage).

1) Meghan – Naps should be at the same scheduled time each day. Tommy – Naps should happen when she’s tired.

2) Meghan – She has to get the full doctor recommended amount of food each day. Tommy – When she’s full or throwing up, she should be done eating.

3) Meghan – She should get a bath every other night. Tommy – She’s shits and pisses herself, lets bathe her every day.

4) Meghan – It’s ok for the cat to sniff and lick her. Tommy – He licks his ass. No way.

5) Meghan – The car seat needs to face backwards like the directions say. Tommy – she can’t see anything cool that way and we’re all gonna die if we hit something at 65 anyway (see video below). Let’s turn her around.

Yes Meghan, you are right. I am a fat piece of crap. But please understand that i’m right too. You are an angry little elf.

Below are some pictures and videos of the nicest one in our house right now. Enjoy.

Sorry, sorry, sorry. I have been yelled at over the last few weeks for not blogging, so a big generalized “sorry” goes out to all of you. All is well, as you can tell from Tommy’s post last week, but things have been ridiculously crazy and hectic for me so blogging has honestly been at the bottom of my list of things to do.

Here are some of the highlights of things going on with Brooklyn (besides poker games, and playing at the office with Daddy…)

First of all, I apologize for not blogging on Sunday. We had a hurricane and lost power. I suppose I could have driven through floods and over fallen trees to get a generator and a wireless card so I could have blogged on time, but I figured i’d rather stay in and live. We did good by the way. We have the only dry basement in town and the only yard without a downed tree in the neighborhood. Even that damn Charlie Brown christmas tree in our back yard is still upright.

As far as my wife not blogging the previous Sunday, I can’t say anything except that unlike the hard working oompa loompas, she is from the lazy midget tribe. In fact she might be their leader.

Actually nothing could be further from the truth which is why I find myself in the position I am in right now…at home during the day with BroRo. Last week Meghan went back to work full time. By full time, I mean she is out of the house now from 7am to 7pm, Monday through Saturday (at least for the first few weeks). She is one hard working puta.

Now some of you may wonder why she is going back to work. There are two reasons. 1) God hates me. 2) Meghan’s benefits package from her job is AWESOME. It provides complete healthcare coverage for us and our heart baby (buying this out of pocket now would SUCK). It also provides our kid, and any to come, with their entire college tuition paid for in full at one of 450 schools (which will be even crazier money 18 years from now). Finally, it provides Meghan and I with health benefits for life if she stays until age 45 AND a healthy retirement finance package. All told, it’s a multi-million dollar benefits package to say nothing of her salary. She also gets summers off, holidays breaks off, and can often times go into work a bit later than the norm. Girls with great benefits packages are hot.

On my end, I can run my businesses from home. This means we can keep our full income and be here for the baby most of the time (we also have a steady dose of the Grandmas coming by to help). I just need to make the most of my time while BroRo is napping, when one of the Grandmas comes over, and at night.

Sounds like we have it all figured out.

What we didn’t figure out ahead of time is that I am sort of a poor excuse for a parent. I don’t read baby books to my kid, I read the obituaries and the Daily Racing Form to her. I don’t watch Sesame Street with my kid, but we do spend quality time watching SportsCenter and the stock ticker. And I just don’t seem to get nervous/worried/protective about much, even to the point where I let a neighbor who I had never met before take her for a walk alone around the block yesterday. Everything was fine, but I should have thought that one through more.

She has Meghan, and Grandmas Cate, Eloise & Celia to do the nice baby type stuff with.

That stuffs not for me. I think more like Chris Rock did when he said:

“Sometimes I am walking with my daughter, I’m talking to my daughter, I’m looking at her, I’m pushing her in the stroller. And sometimes I pick her up and I just stare at her and I realize my only job in life is to keep her off the pole.” “Keep my baby off the pole!” “I mean they don’t grade fathers but if your daughter is a stripper you f*&$#@ up.”

That’s both funny, and accurate.

As far as i’m concerned my kid hasn’t been “perfect” since day one. Further I think any parent who honestly thinks their kid is perfect or has a need to raise the perfect kid, is a douchebag. I just want my kid to have fun and to want and think for herself.

I’d also sort of like her to stop sticking her fingers down her throat.

I can tell you that after a week or so of the throwing up, the tube feeding, the diaper changes, the throwing up, the doctor visits, the not sleeping, the throwing up, the outfit changes, the walks around the block and the throwing up that it’s really as good or bad as you want it to be. If i’m selfish, and need to stick to my agenda, it sucks. If I just go with it and work my agenda around hers, it’s cake.

It only took me eight days to learn that lesson. Thats one more day than it took god to create the earth. Not bad.

Below are some photos and videos of BroRo from the last two weeks. Enjoy.

I started writing a different blog posting earlier today.

It was about how well Brooklyn has done in the twelve days since we’ve been home, and how she will turn six months old on Tuesday. I’d started writing about how she had great cardiologist and pediatrician visits this past week and about how she is 3 weeks away from finally finishing her Methodone. And it also talked about how Meghan was going to return to work in a week, and how Brooklyn took her first trips out in public this weekend to Target and Jumping Jacks.

Then Meghan and I made a phone call.

It was to a couple that we have never met. A couple who we were told out about from our nurse practitioner in Boston.

We don’t know what they look like, where they live exactly, or what they do.

What we do know is that they have two young kids and had their world rocked this week when they found out the baby they are expecting has HLHS.

And now they have to make a decision that they never expected to have to make.

We talked for a little while. We told them how we felt and came to make our decision and what has happened since. We asked them what their concerns were or any questions we could answer. We gave them our contact info and the blog URL (which they had not read) and said goodbye.

And then I scrapped the other blog completely and decided instead to use this forum to follow up with that couple. I realize that sometimes things get said over the phone and you try and remember them all, but amid the chaos and worry, things can get lost.

So to the couple with the shotty phone service we talked to today, I want you to know these things:

Sorry for not blogging Sunday night (especially to the ladies at the bank!), but once Brooklyn was finally down to sleep it was time for me and The Real Housewives of New Jersey to reunite! I am all caught up now, and tonight ready to update you all on our week that seemed like it would never end…

There is a saying i’ve heard hundreds of times in my life that I never really understood before today.

“He is beside himself”

Well today I was beside myself. And not in the often sad way you usually hear about.

It took several hours for us to be discharged today. We had x-rays and vitals and education about medications. We then got our discharge paperwork and were on the way out when we bumped into an ICU doctor who was in the room when Brooklyn first came back from surgery.

This doctor wasn’t surprised she was going home.

This doctor was surprised she survived at all.

(Meghan and I read the discharge paperwork and are so glad we didn’t realize at the time, and maybe still don’t fully realize, just how crucial and how minute-to-minute things actually were).

Then we got in the car and drove home. Brooklyn had an awful headache (her Migranes are terrible and she won’t take the pacifier to soothe) and cried on and off the entire ride. We didn’t mind.

Let me get back to the beside myself thing. What I can tell you for sure is that I was driving, and we made it home safe. But I don’t remember seeing other cars on the road or exits or rest areas. Physically I was behind the wheel. Mentally I was riding shotgun.

To put it in one statement – I was consumed with what wasn’t.

I was consumed with how ten minutes one way or the other could have been a game-changer to how the rest of my life would have played out. I was consumed with how a little less oxygen could have changed a life not even yet really lived. I was consumed with my wife and how strong she was today, but how humpty-dumpty she almost became. I was consumed with the hugs the doctors had given us just after surgery. I was consumed with other peoples kids who had coded just a few doors down and the ones still laying on the 8th floor.

And then we got home.

All three of us went into the living room and we laughed a bit. Meghan and I fed the baby and gave her some meds. And as I type this my wife is upstairs reading to our daughter. I can hear my wife reading on the baby monitor, and I can hear Brooklyn responding to her.

All three of us went into the living room and we sat on the couch and we laughed. Later, Meghan and I fed the baby and gave her some meds. And as I type this my wife is upstairs reading to our daughter. I can hear my wife reading on the baby monitor, and I can hear Brooklyn responding to her.

And I’ve stopped being consumed with what wasn’t.

I don’t want to anymore.

I have to go give a kiss goodnight…to what was.

We are going home on Tuesday!!!! Thank you GOD!!! We have either annoyed people enough, or made enough of a stink that they are ready to kick us out. No problem here, I am happy to go! Truthfully though, Brooklyn has made great progress and she will receive her last dose of Adivan in the morning, then we are free. Let’s not kid ourselves into thinking we are out of here in the morning though…discharge paperwork can take FOREVER. One way or the other though, this is my last night sleeping in the pull out chair!

Since I was very young, I have had the good fortune of being surrounded by truly funny people.

I was born into a family of funny people. My mothers side of the family, who I describe simply as “the jews”, are a warm hearted bunch of schlemiels (and maybe a couple of yentas). My fathers side of the family, who I describe simply as “the italians”, are a colorful group who laugh best in a large group at a busy dining room table. Despite some tough personalities on both sides, laughter always made an appearance.

I was also born into a much larger group of funny people. When I was three, my family opened a comedy club. This was just at the beginning of the comedy boom when stand-up was “in” and clubs were busy every night. Every weekend there was a new group of comics in town to go see.

In elementary school I used to love to watch the shows and laugh. Lots of times I didn’t even know what a particular joke meant, but the crowds would erupt, and I would join in with them. I would memorize the jokes and tell them to my classmates. I once called my mother a schmuck because I thought it was a funny word. She and her wooden spoon helped me to learn its meaning. Besides my mothers lesson, I learned then that being funny made me popular.
In my teens I began to work the door at the comedy club and would socialize with the talent after the shows. I was amazed at the fact that simply by being funny, comics (often times some ugly and awkward people) were able get women or free drinks or feed whatever other vice they had – gratis. I learned that funny gets you things.

In recent years, I got really lucky and married up. When I met Meghan, I wasn’t necessarily the charming or super delicious person that I am right now. We met at a concert and then not again for a few years. When we met again however she remembered me as the funny guy. Eventually I broke down and accepted her marriage proposal. I learned that funny makes you memorable (and desirable).

Over the past 10 months though I have learned perhaps the best lesson about funny. Funny keeps serious at bay. And not just for you, but for those around you. When Meghan and I got the diagnosis with BroRo, we were very serious for about two weeks, but then eventually let humor soften things and get us to the birth. We joked and pranked our way through six weeks in the hospital this winter, and another two weeks this month. We have, and continue to, make our docs and nurses laugh and let them know that it’s ok to joke with us (which they really appreciate).

We recognize the seriousness of what is happening, but even more so we recognize the seriousness of letting the seriousness take over.

Funny can make you popular, it can get you things, it makes you memorable, and most importantly – it keeps serious at bay.

I am very quickly losing my patience today, and just felt the need to write it somewhere. A quick vent session if you will, so please don’t judge.

Today was our big Echocardiogram. If you come in for surgery, you HAVE to have one of these before being discharged so they can make sure what they did in surgery is working the way it should. We were a bit concerned going into the procedure today because when our surgeon came to talk to us immediately following surgery and “the event”, he said that her heart function was pretty poor and actually worse than pre-surgery. This is, however, to be expected considering the trauma the heart went through during surgery. It is a muscle after all, so think about the one day you get off the couch just after the new year and decided to go the gym. You get really excited about the idea of getting back in shape that you give a good 3 sets of 10 to every machine, free weight, medicine ball, kettle bell, you can find until complete failure (or better yet, you have experienced even just the “warm up” of Insanity with Shaun T). The next day, and maybe even that night, you want to die. You can’t sit, you can’t stand for too long without your legs shaking and giving out, you can’t walk, and god help you if you have to go to the bathroom! That is how Brooklyn’s heart felt after the trauma that was her surgery. We were scared though that maybe it wouldn’t recover.

First let me get right to the good stuff. Brooklyn met with Neurology today.

“She looks great. We don’t have any concerns.”

I can’t describe the deep breath I took immediately after they said that. YESSSSS!! This was such a relief. We have been getting the same response from our Cardiology team, but they specialize in Cardiology. To get this response direct from Neurology (especially at this hospital) was so reassuring.

My euphoria was rolling right along until tonight when a little air came out of that balloon. Not in a long-term sort of way, but tonight was the first night that Brooklyn got her methadone….from me. Here I was, holding my happy little kid. She’s looking at me with big eyes and smiling. She’s perfect.

Then I gave her the methadone.

It was like I put her into a coma. Her smile went away, her eyes fluttered and then closed, and then reopened. They were no longer happy eyes. They were glassy and zoned out. Her arms fell to her sides and didn’t move again. It was awful. Then she went to sleep. A methadone sleep though isn’t like a regular sleep. Her eyes are closed, but her heart rate is still the same as if she was awake. I guess the coma analogy is pretty accurate. I’m so done with these drugs. Fortunately she only has 2 or 3 more days and then she’s off of them.

I keep reminding myself that these people are the experts and this is what they do.

Along those lines, I want to talk about something else I think is worth noting.

Meghan and I have gotten a lot of private messages via the blog and her facebook account from other parents who either are in Boston now, have come to Boston, or are deciding if they want to come to Boston or not. For that last group of parents on the fence I can recommend: Yeah, Go To Boston!

Now there are great care centers elsewhere. I hear a lot of good stuff about Philadelphia, NY, LA & Michigan among others. I decided today though to take a look at this US News & World Report rankings that I keep seeing posters of in the lobby.

WOW! I knew they were good, but this good? Anyway, below are the results of the report. They speak for themselves:

Pediatric Cancer – Number 1 in the nation – score: 100 out of 100

Pediatric Cardiology & Heart Surgery – Number 1 in the nation – score: 100 out of 100

Pediatric Nephrology – Number 1 in the nation – score: 100 out of 100

Pediatric Neurology & Neurosurgery – Number 1 in the nation – score: 100 out of 100

Pediatric Orthopedics – Number 1 in the nation – score: 100 out of 100

Pediatric Urology – Number 1 in the nation – score: 100 out of 100

Pediatric Diabetes & Endocrinology – Number 2 in the nation – score: 93.6 out of 100

Pediatric Gastroenterology – Number 2 in the nation – score: 99 out of 100

Pediatric Neonatology – Number 2 in the nation – score: 93.2 out of 100

Pediatric Pulmonology – Number 3 in the nation – score: 90.3 out of 100

You can find the rankings here: http://health.usnews.com/best-hospitals/pediatric-rankings

I still don’t like the Celtics much. I can’t stand the Patriots. Oh, and those

Brooklyn got the “A-OK” this morning on rounds to Move On Up…..(c’mon, you know it)…To The East Siiiidddeeee! Our piece of pie will come when we get to go home, but for now this is a step in the right direction!

Last night I didn’t get more than ten minutes of sleep at a time. It’s not because I didn’t want to sleep and it’s not because I wasn’t totally exhausted. It was because Brooklyn cried…the whole damn night. And since we are so far along, we now have a nurse to share with another room instead of a nurse to ourselves (which in the overall scheme is a good thing).

Right now she is dealing with some really serious headaches. Since her surgery improved her circulation to the upper half of her body, her head is getting a lot more blood than it ever has before. This is healthy for her in the long run, but it’s also new for her and she needs to adjust. The doctors said it would be like having a migrane headache that could last for up to 10 days. Her sensitivity to sound and light is unbelievable and it never gets dark our quiet in here. Ouch. On top of that she has the pain that comes with just having had open heart surgery. She’s also WAY overtired. Oh yeah, and now she’s constipated.

She was given Tylenol, Methodone, Miralax, Morphine and a Glycerine Suppository, but no relief on any fronts. Since her throat hurts, she won’t take the pacifier, so calming her that way is out of the question. Oh, and I still can’t pick her up. You sorta just get to hold her hand, stroke her hair, and get screamed at.

Who wants to babysit tonight?

Anyway, while I was standing cribside last night I got to thinking about my father. Those of you who know him, know that he’s a hustler. He likes to work and make money and enjoys constant action. What you might not know is that he originally was a teacher. It’s what he got his degree in and what he originally started to do out of college.

I think despite his successes elsewhere, he was meant to teach.

It is July 25th, Christmas in July!!! Father Bob stopped by yesterday to give us a special prayer based it being Jesus’ half birthday. The picture on the prayer had Santa in a bathing suit riding waves, so Brooklyn thought it appropriate to give us lots of gifts today! Where oh where do we begin…

Last night was my fourth night this week Sleeping in the Cardiac Intensive Care Unit (CICU). At times it can be rough. The lights rarely turn off, alarms and bells sound on the regular and the padded bench is the second most uncomfortable place i’ve ever slept (slightly more comfortable than Las Vegas Blvd). Two nights ago there was a code blue call (cardiac arrest) for a boy down the hall. Then yesterday evening there was one for the girl right next door. It scares you and makes you thankful all in the same moment.

Every once in a while though, sleeping in the CICU can be rewarding, like this morning. At 4:15am the alarm went off in our room. I got up and saw the nurse calmly turn it off (it was for high heart rate). Then I looked in the crib and Brooklyn was awake! She was moving her arms and legs all around and her eyes were open. They had stopped giving her the paralytic medication and she woke up…much faster than they’d expected. They quickly sedated her so that she would not pull out any tubes or stitches or staples, but she was and is definitely awake. She has a little Robert Downey Jr. look to her right now thanks to the morphine, but she’s certainly back. I have put a photo below.

Welcome back kid!

I also wanted to take a minute to address something in this post that is very important to Meghan and I. Yesterday we spoke to someone whose opinion we value a great deal. He told us that he was so angry with the surgeon when he heard what happened. He was furious and thought for sure we would be to.

We are not angry and have not been. Not for one fraction of one second. At first we were probably too freaked out to be angry, and then by the time we understood what happened, we were (and are) totally totally grateful.

At rounds this morning, they felt that Brooklyn was doing well and ready for chest closure. YAY! While most heart families have experienced this before, since most kids come back from their Norwood (first surgery) with the chest open, this is ALL new to us b/c Brooklyn came back chest already closed from the Norwood! They don’t have to move her at all for this procedure. They create a mini OR and sterile field right at her bedside in the CICU, and kick us out. At about 10:30am they said they would get started in the next hour or so and that it could take a few hours. So we packed up our things, kissed the peanut goodbye, and decided to get some laundry done.

After two solid hours of nothing, Brooklyn moved her belly. Then her ankles, legs, toes, arms, fingers, and lips. She fluttered her eyes, but her eyelids were too heavy with fluid to open.

This means that there is either minor damage or no damage at all. It’s impossible to know now, and we will never know 100% until we take her home and watch her grow up (a possibility very much in jeopardy the last two days), but they are VERY VERY VERY happy with everything they’ve seen. We will still need to do an MRI and possibly a CT.

We have now seen some of the worlds best doctors, who are schooled not to show emotion, show emotion.

It’s amazing to have been recesitated for 18 minutes straight and be as good as she is right now. On Wednesday morning she was in the right place, at the right time, with the right people. Amazing.
There is some video below that you can see a bit of her movement. Sorry it’s not clearer, but the key grip was running late. You can also hear one of the doctors in the background. Since BroRo’s chest is still open, they had to put her back on a paralytic before she moved too much.

More to come.

It seems like every day in the Cardiac Intensive Care Unit (CICU) there is something to look forward to. Yesterday it was the head ultrasound (best deep breath I ever took) and this morning it was watching the nurse shift change in hopes of getting a hot one (we did so-so, shes a 2 beer kinda girl).

Now later this morning/afternoon we have to look forward to Brooklyn being taken off of the paralytic medication. She has been totally immobile with her eyes closed since she went into surgery. After the head ultrasound yesterday (which ruled out severe brain damage or brain death), they look to see if she moves her fingers, hands, legs, toes and opens her eyes. They don’t know how long it will take for the paralytic to wear off, but bet your ass it will be too long as Meghan and I sit by the bed waiting for something to happen.

If she reacts well it is likely they will take out the breathing tube shortly and let her breathe on her own. If there is not a good reaction, or no reaction, we will wait another day to close up her chest and then take her to get a CT scan and see whats what.

So my mantra for today is “Twitch Bitch”.

I’m anxious to see the body and brain talking well.

24 hours has past since surgery and since Brooklyn has been in the CICU. It has been a whirlwind and all I can think is “this was supposed to be the easy surgery!”. I’ve gone through a lot of emotions of sad, mad, “whatever”, hope, pity, denial, happy, and completely void of all emotion. All in 24 hours. Today was a good day for her, and we continue to see signs of improvement from all ends. Here is an update on the 5 things Tommy listed from before:

As I mentioned last night we have four big obstacles with Brooklyn. The brain, the heart, the lungs and her right leg. We have some questions answered, but a lot more (including the big one) remain unanswered.

The good news we have received so far is that the repair to Brooklyn’s heart was successful and her heart has stabilized. Her heart rate is good, her oxygen sats are good and there is no internal bleeding. Her blood pressure is good for the most part although it has moments of instability that they combat with medication. It’s very much a balancing act and one that our doctors and nurses seem to be winning right now.

Brooklyns chest and lungs came back looking surprisingly good as well. With her chest cut open, our 15lb kid got over 1800 chest compressions from an adult. Despite all of this she has no broken ribs and only a bruise on one of her lungs to report. This should not be a long term issue and her lungs have pretty much been drained. This by the way is the reason her chest is still open as they didn’t want the lungs to swell after the compression and cause trouble within her chest cavity. If things maintain as they are they may look to close her chest up by Saturday.

As far as her right leg, we need to give it a bit more time. They are getting pulses throughout her leg, but it’s certainly been damaged. They had to rush to bypass through the artery at the top of the right leg. This is not ideal because it’s further from the heart and because the artery is much smaller. Meghan and our doctors and I do see signs of improvement, but it’s far normal right now. Her left leg is cool and although puffy, is still soft. Her right leg is ice cold and like a piece of wood. The color is getting better, but it’s very very full and very very heavy.

The brain. This is of course the big one and we have no idea. The possibilities include everything in a range from normal function to brain dead. We are waiting for a bedside ultrasound. This won’t give us a lot of answers, but if there are major problems with the brain, this will let us know. Once she is stable enough to be moved, they will do a CT scan which will answer some more questions. We did not have a photo of her brain before the surgery, so even if we do see some small spots or things like that, we can’t know what was a product of the first surgery and what is a result of yesterdays events. The doctors are working out a plan to pull her off the paralytic medication to see if we get fingers and toes moving, but we won’t get that far today. When we open her eyes and shine in a light her pupils do respond which is a positive, but not necessarily an indicator either way.

At some point they are going to get the scans of the brain that they need. Then they are going to bring Meghan and I into a room and give us the results.

It’s like driving 150 miles per hour into a blind curve.

Hopefully I don’t sound like a broken record, but thank you everyone for your prayers and comments. It’s a bit overwhelming in a very good way. We have been sharing some of them with Brooklyn. She doesn’t know all of the people writing her (and actually we don’t either), but that doesn’t matter. Please keep them coming.

As Meghan and I were being updated throughout the day today, we were getting the broad strokes of the surgery. We had a little time of concern and a good time of joy at the end.

Early this evening we got the specifics. It’s all concern now.

As the doctors were opening Brooklyn’s chest today, they had to cut through a great deal of scar tissue. They cut through very carefully towards the sternum. What they did not know is that Brooklyn’s shunt had grown to attach itself to the inside of the sternum. In cutting the sternum, they cut the shunt.

When this happened, she gushed blood continuously.

The picture painted for us is that everything stopped and there was a rush to stop the bleeding and get her on bypass. This took 30 minutes. For the first 12 of those minutes she still had good blood pressure.

The other 18 minutes were our doctor doing chest compressions to keep the blood moving long enough to get her onto Bypass.

What this all means is that we don’t know if Brooklyn was getting enough oxygen to her brain over those 18 minutes. We don’t know tonight, and probably won’t know tomorrow. Maybe by Friday.

It is very possible she received some degree of brain damage.

Our doctors are worried.

We are scared.

It is also possible that because her body was so cold and because they jumped into the compressions right away (unlike a runner passing out in a field alone), she may be ok.

No one knows and no one can get us answers.

We can just wait and wonder.

We have a baby who is swollen, chest open, paralyzed and we don’t know what the status of her brain is.

This is to say nothing of course of the fact that her heart is not quite functioning as they’d hoped it would be, her lungs have a bunch of blood and other fluid in them, and one of her legs has poor blood flow (purple) due to the emergency bypass.

I have posted some photos below. They are not for those with weak stomachs (chest is open).

We really are doing our best to stay positive.

It’s hard.

I will be spending the night in the ICU with Brooklyn. They are working feverishly to get her heart stable about 5 feet from where I sit and watch. With all the brain worry, it’s easy to forget she has to survive the heart surgery still.

Meghan is at our temp housing trying to keep herself together. She got no sleep last night, so she was already a shell of herself before tonight.

One of us will blog tomorrow when we know more.

We realize that this is something of a personal situation, but we have been so public with everything so far, we are going for broke. We had 489 people visit our blog today. Not hits by a bunch of users coming back time and again, 489 different people (in 25 states and 57 countries). Thank you everyone for your support. It means a great deal and helps the long minutes become shorter.

Our nurse liason just found us in the waiting room.  She came over with the hospital chaplain.  She must have seen my face b/c she quickly said “oh no, no, it’s good news!  The Chaplain just happened to be following me!!!”.  Oh – My – God …. literally!!

4:15pm – OFF BYPASS!!!!!  PHHHEEWWWWW!!!!  My blood pressure just dropped significantly and is hopefully evening out right about now.  The repair is working the way they want it and we are good to go.

No specifics just yet in regards to the initial blood loss, how quickly she was able to come off bypass, etc. etc.  We will be meeting with our surgeon within the next 45 minutes or so and he will give us the nitty gritty.  We are just happy she is done and off bypass!  We were starting to feel like “that guy” in the football draft that the cameras are on who doesn’t get picked F-O-R-E-V-E-R, and has to keep looking like he is interested in even playing football anymore!!

Tommy will blog later tonight with all the rest of the details from our meeting with the surgeon, trip to CICU, etc.  For now, this is the end of the  frequent surgery updates.  Thank you all SOOOOOOOOOOO much for your thoughts and prayers today.  It certainly helped, and definitely helped keep our mind off of things!  Keep ‘em coming though cause we aren’t done yet!

3:40 – We are now over seven hours in. It’s a pretty significant time being under general anesthesia. The hospital liason came by a minute ago to tell us that Brooklyn is back up to temperature, or “warmed” as they put it. That said, she is STILL on bypass and her chest is STILL open. The initial repair we are told is done and they are doing testing and “fine tuning” to make sure the repair works the way they want it to before taking her off bypass.

We have a hundred questions, as i’m sure many of you do and when we know more we will keep you posted.

Sadly there is no liquor store here at Children’s Hospital.

1:37 pm – they are still working on the repair and we are told she is still in good/stable condition.  Still on bypass and still “frozen”.  The initial excitement took them some time to correct and get back on track so as Tommy said the end result is that the surgery itself will be longer.  Awesome (

They do not have a time table for finishing the repair, but our surgical liason will call back around 3pm for an update.  Please keep praying for our peanut!!  This could be the longest few hours of our lives just waiting for the official report (and more importantly for her to come off bypass cleanly)!

12:25 – So we didn’t get a phone call at 12:00. Instead our doctors just came out to see us. They told us that when the doctors were using the saw/scalpel to open Brooklyn up, they accidently cut into her Sano shunt. This is the shunt that she got during her first surgery. They had to rush her onto bypass through her femoral artery (in her leg) as opposed to directly through the heart. As a result of the shunt being cut, she lost a lot of blood very quickly and she did have a blood transfusion. The part that was damaged (shunt) was a part they were going to remove anyway. The long and short of it is that she is stable now. She is going to be on bypass longer than expected, but they do expect her to be fine. We continue to wait in the parent area and will keep you posted when we know more.

11:05 – Just got the call that Brooklyn is on the heart and lung machine (bypass). She is stable and they are working on her heart right now. There is no timetable for this but they will call again around noon.

9:55 – Got a call that they just opened the chest. All is smooth so far. They will call back around 11:15.

Today is finally the day. I slept and Meghan didn’t. More importantly, Brooklyn did.

She has passed every test so far and is as ready to go as she can be.

In about 45 minutes they’ll take her from us. After she is behind closed doors they will put her to sleep and drop her body temperature to 18 degrees. They they will open her chest and put her on bypass….and stop her heart.

All this before 9am.

Surgery can last anywhere from 3 to 8 hours depending who we ask.

We will keep the blog posted throughout the day.

Good luck BroRo.

Well, I now officially remember how much I hate this whole thing. It’s easy to forget when you have a chunky, bubbly baby at home and have a few doctors check ups every now and then. It all VERY quickly comes back to you when anesthesia says “ok, we have this under control, you guys can leave now…”. Blllaaaahhhhhhh.

I have a gift (several actually). I can sleep through pretty much anything. Regardless of whether it’s a party downstairs, a Puerto Rican couple screaming and using pots and pans to make a point or even a homeless guy outside my window playing Jingle Bells on a recorder in mid July…I can ignore it and get some shut eye.

The only two things that I CAN’T sleep through though are 1) Brooklyn screaming after being awoken by a convoy of ambulances every 20 minutes for eight straight hours and 2) My wife poking me while i’m in a dead in sleep to ask me “Can you see the baby? Is she sleeping?”. Seriously???

This is how I started my summer vacation.

After this exhilarating first night of women’s soccer, changing rooms (and floors) with our truckload full of baby crap and no sleep I awoke to find that the baby was actually in a pretty good mood. She was up (shocker) at 5:30am and was staring at me as if to say “how’d you get in my room?”.

Today can best be described as a cardiac scavenger hunt. We spent the day at pre-op admitting, being told where to go and what to do next, then doing it, coming back, crossing it off the list, and going to the next place. We must have walked 3 miles just within the building today.

We got to the hospital by 7:15 and didn’t start with anything medical right away. Instead we had a photo shoot. Brooklyn was chosen to be one of the kids on the Children’s Hospital brochure for kids with Congenital Heart Diseases. She was really good for the first ten minutes or so of photos and then they brought in this cute little boy and she got all kinds of diva on us and we had to end the session early. Unless that kid likes a girl who screams in his face and then sticks her finger in her mouth to gag herself, I’d say she ruined her chances with him.

Our next stop was supposed to be admitting. To try and save time, Meghan went to admitting to fill out paperwork while I took the baby and the stroller o’ crap and headed to Cardiology. No sooner did Meghan turn the corner in the hallway than Brooklyn just lost it. She was screaming like someone had just stabbed her. In the hallway – screaming. In the waiting room – screaming. In the stroller – screaming. In my arms – screaming. In a private “lets take mercy on that dad” room – screaming. She was screaming notes that Mariah Carey couldn’t have hit as a teenager and breaking them up with turning purple and holding her breath. And all this before anyone even saw her for anything. 30 minutes of ear piercing later Meghan returned. Brooklyn was exhausted but still trying to scream – it was sad and funny (well woulda been funny if it wasn’t me) all at once. Then Meghan tried to change her diaper, BroRo pissed everywhere on the exam table, and then she pretty much passed out.

Then we were able to get to work.

She got weighed. She got her oxygen sats done. She got her head circumference taken. She got her height measured. All checked out great.

Then she got an EKG (photo below). Results were great.

Then she got an x-ray. Mommy doesn’t like taking Brooklyn in for x-rays. So….how this kid has any voice left is beyond me. The good news is that the x-ray came back clean.

Then she got blood work. They had to use a second nurse to hold her down (video below of the screaming), but her blood work came back clean.

Then we got to meet with someone from anesthesia. In addition to putting her under general anesthesia on Wednesday for the open heart surgery, they have to put her under general anesthesia tomorrow as well (the day before open heart) so they can do her Echocardiogram and MRI. The reason is they need to control when she does and does not breath so she will get a breathing tube tomorrow as well. The lady went through all the risks with us, which are all quite sobering, and of course we agreed since our other option is…yeah, exactly.

Then we got to meet with a cardiology fellow who explained the surgery and got us to sign another form saying that the hospital will never ever never ever never ever get sued by us for anything never ever. We of course signed this too.

Then we got to meet with some lady doing a study on Insulin or something??? I had a bag of chocolate covered pretzels by that point so I don’t know what she was saying. But Meghan was listening and we signed up.

Then we got to meet with our cardiologist. We talked heart for a while. Then he told me a joke. Then I told him one. Then I told him that I thought Brooklyn might grow up to be gay. He said “well its a good chance with thighs like those.” Needless to say I really like this guy.

Then we got to meet with a nurse and talked about our first surgery and stay here, what to expect this time around, etc. She asked what questions we had, which by that point were none. She took mercy on us and let us go.

The only person we didn’t meet with is our Surgeon. The cardiologist said we were going to see him tomorrow anyway, and it would make sense to just wait til then to see him once since he will have MRI and Echo results at that meeting.

And then after all the screaming and bleeding, all the poking and puking, Meghan and I decided the best thing for Brooklyn was not a nap or quite rest at the hotel. Nope, not us. What a tired baby really needs after a day like this is a loud crowded restaurant. So we went to Bertucci’s. This is the first time Meghan and I have eaten out since February 23rd (our last day in CICU). Within 5 minutes of sitting down, Brooklyn was crying. 3 minutes later she was throwing up while being held over the restaurant bathroom sink. Then she was remarkably good and let us eat. Probably not our best idea yet, but we made it work.

And now we are back at the luxurious Best Western. Everyone got a nap and we are now getting ready for tomorrow. On a personal note, for all soon-to-be married or maybe-considering getting married couples…get the double beds in the hotel room. It, like me, is a gift. I’m thinking about doing the Leave it to Beaver thing in our bedroom when we get home.

As far as the schedule moving forward, it goes like this:

TUESDAY – 10am – Brooklyn goes under general anesthesia and gets the breathing tube. Then she gets a MRI and an Echocardiogram. She is NOT scheduled to get a Cath unless the doctors see something they don’t like and want to get a better look at. Depending on her condition she may or may not come back to the hotel with us tomorrow. If they have trouble getting her IV’s in and don’t want to repeat the process on Wednesday, or if she has trouble getting off the anesthesia, she will stay at the hospital. Otherwise, she’ll come back to the hotel.

WEDNESDAY – 7am – Brooklyn is first on the surgery schedule. I won’t go into these details yet. I’d like to just get through tomorrow first.

Below are some photos and videos from today. Enjoy.

The long awaited trip is finally here. Ugh. Not exactly sure how I feel about it. We are pretending it is a vacation until we can’t fool ourselves anymore! We packed up the house, gave Tucker a few extra treats, and headed down The Pike yet again. We decided to stay in a hotel for the few days that Brooklyn is with us, and once she gets admitted to the hospital we were fortunate enough to be able to score the same apartment building (but different space) for her inpatient period (thank you Low!!).

Bring on Boston.

My wife and I were both in agreement last night that we are looking forward to getting there and getting this surgery done. Not because we are in love with the idea of open heart surgery, but because we are starting to see some “not fun” things.

The biggest “not fun” thing we we are seeing lately is a change in color. BroRo is slowly getting a grey tone to her and some bluish purplish spots from time to time. Her fingernails, her toe nails, her lips and the tip of her nose are getting blue more often. Sometimes she gets purplish from the waist down for about 30 seconds, but then her color comes right back. It’s weird to see, but it’s becoming more normal these days.

Quarantine?? Yes, after 2 and a half months, Tommy and I have officially finished the Lost series on Netflix! All of you suckers had to wait 6 long years to find out it was Locke in the casket, or that Jack was the chosen one, or that Sawyer and Juliet would find their way back to each other. Two and a half months is all it took for us, and now we are finally FREE from the hold this show had on us!!!

My wife and I are very different people. We’ve always known this. We don’t think the same and we don’t have many common interests. Despite this, we have a strong marriage and are best friends. On occasion we disagree. The formula for this is as follows: Tommy THINKS he’s right vs. Meghan CAN’T be wrong.

When it comes to the care of our daughter, we are totally in step with one another. That doesn’t mean however we see things the same way. Ultimately, our equation in relation to our daughter is like this:

Meghan worries about the small day to day things, but sees Brooklyn doing well in the long run.

I don’t get worried at all by the small day to day things, but I don’t see a Brooklyn in the long run.

Don’t jump on me just yet. I’m not saying I think she’s going to die. I just can’t picture her any older than tomorrow. My wife can see her going to dance classes and things like that. If I clear my mind of everything, close my eyes and try really really hard, I can’t even see her crawling. I can see my young nieces and nephews as teenagers, and I can even see my brothers newborn walking with his parents. I just can’t for the life of me see past tomorrow with my kid. I’m pretty sure this is how I deal.

I don’t envision and I don’t expect.

Somewhere along the line I convinced myself that this is how it had to be for me.

We are 23 days away from surgery and I don’t envision us bringing her home. I don’t envision us not bringing her home either. I don’t even envision us walking into the hospital. I envision nothing.

I don’t expect any problems. I also don’t expect a smooth ride. I expect nothing.

I just know, as much as I’ve ever known anything in my life, that whatever the moment is…I will handle it.

How did we celebrate?? With 4 more shots of vaccinations of course! Booo. This round seemed to be worse than the last, but 18 hours later we were ALL back to ourselves after a very uncomfortable and fever ridden day.

Brooklyn was the youngest Nicchi in the family for a whopping 112 days. She no longer has that distinction. And no people, I did not give birth. My Brother and his wife welcomed their first baby this past week. His name is Cooper and he was born a little early (4 weeks) and a little small (6lbs). He has more hair than BroRo already and he looks a little like the delivery guy from my chinese place. His name means barrel maker, which only matters if he grows up to make barrels. Most importantly he is healthy (!) and should be going home anyday. Congrats all around. Here is a photo of the little man:

Back on the home front, we had a pretty interesting week with BroRo.

BroRo mighta kinda sorta figured out how to sleep again. This may be just a tease. Or maybe the Ambien chewables are working. Only time will tell.

Brooklyn also met the UPS guy this week. He rang the doorbell and I opened it. I signed for the package (thanks to all the young Rotondo/Damaso ladies for the heavy brick/tile type thing) and the UPS guy said “How is the baby?”. Without hesitation I replied, “I think she’s becoming a racist.” Then the UPS guy laughed and I laughed and he left. We are either going to be the first people on the delivery route from now on or we are never getting another package again.