Wednesday, March 28, 2012


I haven't posted in awhile in hopes that my next post would be: bought airplane tickets flying home today!  Turns out too many people were worried about Olivia.  Everyone was right to worry, yesterday's cardiology appointment was a depressing one.  The blood transfusion that magically saved the day is only a small band-aid on this gaping wound. 

In order to understand we must go back in time: "Only 15% of HLHS babies have 2 superior vena cava's," Dr. Spray said pre-op. "There was no second vena cava, everything went fine though," Dr. Spray post surgery.  "Theres a huge thing carrying blood right there," echocardiogram radiologist when asked if she still saw the extra vena cava.  "It's just a big vein," said a cardiology attending.  "Olivia's earlier cath's only showed it to be a small little vein," Dr. Schatner said yesterday.  She then proceeded to explain (praphrashed in a mixed up incomprehensible way, but how I understood it):

The large vein has grown since her norwood on her pulmonary artery.  It turns out it is growing and slowly it will siphon more blood from the direction we want the blood flowing.  Meaning lower sats, until finally when she gets older it has grown so big that her sats would be at a very dangerous level.  The only option is to do catheterization number 3 and coil off that vein before it gets too bad. 

From my understanding HLHS kids on the path to a fontan circulation, which requires all 3 surgeries to complete, grow these tiny little veins along their arteries (or something like that).  Sometimes these collateral veins take too much blood away from the fontan circulation that it gets very dangerous.  Olivia has one of these veins that must be coiled off for her to survive now.  Her last 2 catheterizations went through her leg, and the last one it took them 2 hours to find her pulse in her leg (very scary).  This cath will go through her neck.  I haven't had time to research going through the neck vs. the femoral leg artery, but the neck sounds just as scary.  I guess the only good news is that we won't have trouble finding her pulse in her neck after the cath. 

Typically CHOP likes to wait 6 weeks to bring a post-op child to the cath lab, but the great Dr. Rome doesn't think it is necessary to wait.  The greediness to want to get home inside of me is happy, but I am still worried maybe it is too early.  I told them we can wait or we can do it now I would trust their opinion.   Right now I am waiting to get the call for them to schedule it.  If she gets her cath friday and everything goes great, we still might be able to get home before Easter, which would be so amazing.  

If that wasn't enough her eating of the enfaport is random.  Sometimes she loves it, other times she hates it.  Sometimes I have to fight with her to drink it, and other times she'll just drink half of what she needs.  With all the diuretics she is on, she needs to get almost 670ml's a day to hydrate and get some nutrition from her formula.  Yesterday before she went to bed we were at 450ml's.  I figured I would feed her at 10pm, and she took 4 oz, but I didn't think she'd wake up at 2am and 5am to get 8 more ounces.  At 5am she didn't want it, but she woke up crying like she was hungry, after a 10 minute fight she took 4 ounces.  This morning it was a fight to take 2 and a half ounces.  If she isn't careful she will end up in the hospital before her cath and maybe even an ng-tube.  AHHHHHHHHHHHH!   I just want to man scream. 

To describe how I feel right now can be summarized as depressed.  In detail I am excited to be going home, helpless about this cath, mad about her feeds, empty from missing my other kids so much, lonely without my wife who always knows what to do.  It is like that empty hopeless lonely feeling you get in the pit of your stomach when everything you wanted behind Door #3 turns out to be a donkey wearing a sombrero with a cart full of donkey crap and the audience is laughing at you.  If I was a lady i'd be crying myself to sleep every night, as a manly man the tears just don't come, so it just feels like emptiness.

The good news is that if everything goes perfect, she eats well, and her pulse comes back in her neck we might just be able to get home April 4th.  Anything past April 4th and the emptiness will be so empty that it could fill a bottomless pit. 

On a positive note, Olivia watched Sesame Street the whole time I wrote this blog post, what a good girl giving me a little break.  She whined a little bit as I posted the cute pictures, and started crying as I hit Publish!  Now she's better, in daddy's arms. *spoiled rotten*


  1. Oh man Brett, I feel your pain. Bodie spent 5 months in the hospital interstage and it was Hell. It felt like an endless pit of depression. I felt like I was failing both him and my daughter (3-year old at home with daddy) on a regular basis. I was failing my son because I couldn't get him well enough to leave the hospital and I was failing my daughter because I couldn't give her the quality time she needed (we were lucky our hospital was in our home city, but I was still a good hour away, so didn't see her nearly as often as I wanted). So, although I might be projecting what I felt onto you (us women are good at that, I'm afraid), I do understand what you're going through. Some thoughts:

    1. Collaterals are TOTALLY common post-Glenn - and are easily addressed in the cath lab. It's a simple, expected procedure (as much as anything is expected or simple with our kids). let's put it this way - I'm not surprised to hear this is what's going on, just because I know SO MANY HLHSers who've had this happen between the Glenn and Fontan. And almost all of them, went into for a cath, got them coiled and were home the next day. So, not to minimize your fear at all, but you should know you're in good company.

    2. My mantra when we were in the hospital was always "It doesn't matter how long it takes to get home, ONLY that we get home." Just focus on the end goal.

    3. Honest to God, it doesn't matter how long you are in the hospital, once you are finally home, this will all fade to a bad nightmare - I PROMISE. Seriously, once we got home from his almost 5-month stay, within like 2 weeks it seemed like a bad nightmare that had happened to someone else. Trust me, she will recover from all of this faster than you will (and, if you're anything like me and my husband, you'll have some serious PTSD to deal with - and you'll be trigger-happy for awhile in terms of freaking out about every little thing), but you will eventually both get to the point where this will all be a distant (very bad) memory.

    Hang in there - and look to those of us who've walked in your shoes to know that YOU ARE NOT ALONE and YOU CAN DO THIS!!!

    Heart Hugs,

  2. Dear Brett,

    I could almost feel your disappointment and heartache as I read this post. )-: I feel let down right now as well, since as I stated in my post of last Saturday that I have been following your blog since January.

    The only thing I really can do for you is pray, pray, pray!! Which, I HAVE been doing. Olivia is ALWAYS in my daily prayers, and will continue to be. (Your whole family as well)

    God Bless, keep the Faith, and remember that our Lord Jesus Christ walks beside you always.

    Peace & God Bless,
    Pamela M.
    Coventry, RI

  3. Dear Brett,
    I've been following your blog for a couple of months now. I have to admit it's been for a selfish reason. My son Jasper was born with HLHS on 10-29-2011. I follow your posts hoping they will help me prepare for what we will be going through. Jasper has not had his Glenn yet because he hasn't gained enough weight. His gallbladder was full of stones and had to be removed when he was a little over a month old. At this time he only weighs nine and a half pounds. He had a ng-tube in for a week and then had to have a g-tube put in when his gallbladder was removed. He eats much better after his gallbladder was removed, so we don't use the g-tube. The ng-tube was so not fun. He actually puked it up twice and I had to pull it myself.
    What you wrote today really struck home for me. I feel you described the emotional state of a HLHS parent perfectly. Holidays make being in the hospital so much harder, especially when you have other kids. Jasper spent Thanksgiving and Christmas in the hospital and my daughter did not want to celebrate Christmas in the CVICU.
    I know it's tough but hang in there. That beautiful baby couldn't asked for a more devoted daddy.
    Oakland TN

  4. So glad to hear form you, even though it's not the update that you wanted to give us. The pictures are adorable! Praying everything goes smoothly and in good time.

  5. I am sorry to hear Olivia needs another procedure, but am relieved by the other postings saying this is normal and shall too pass.

    Your family is in our prayers every night. While I know you want to be home with family and friends and I know you cant wait to get back to work, you are being the best dad Olivia could wish for.

  6. You are in the best place for Olivia! There will be many more holidays to come and to enjoy with Olivia being come with family. Think about what good Friday is. You can do this.

  7. It's good to express your feelings, Brett. You don't have to live up to anyone's notion of what a manly man is. We women know that sometimes those tears and primordial screams are cathartic. The journey that your family is making is courageous. Unconditional love is not always easy but is very rewarding. Treasure the moments - even the sad ones - and live in each day moment by moment by moment. The present is the gift no matter what we want for the future. You, Melanie and the kids are making each moment special for each other.

    Olivia's laughing eyes remind me of that cute baby named Brett for whom we named one of the most mischievous but loving characters at Hullen Ridge Castle - Boobrett the Jester. We should review those Boobrett stories together sometime. Perhaps with your expertise we can finally get those e-books done. Love ya! Janie Kreisman Soslow. P.S. Annie says "hi and hang in there."


Olivia loves to hear her mommy/daddy read your comments!