Sometimes life just isn't fair

[KeithTalent]

Sorry to hear, but good luck with everything. At least it sounds like things are progressing positively now.

KT

 

[Chapbass]

This thread should help somewhat. My son was born 2.5 months early last August at 2 pounds and the hospital staff, friends, and coworkers recanted similar experiences they had with early/lightweight births and it helped us. So far so good. Good luck to your family.

I'm a very similar issue. Doctors told my parents that I had a snowball in hell chance to live, and most predicted that I would have tons of issues (disfigurement, defects, vegetable brain). I was about 2 mo early and just a tad over 3lbs at birth. Still, I turned out just fine, not a single problem (I'm 27 now).

OP, obviously it is still a serious issue, but don't dwell too much. Definitely with being the "fixer" type person, it can be completely unnerving, but the best thing you can do right now is be strong for your family. Remember, the human body can do amazing things, and you have amazing people working in your corner.


EDIT: ps: Olivia is a classy name, if I ever have a daughter, that is among the very top of my list of names.

 

[Sho'Nuff]

Bump for update #2

 

[sixone]

Update 2 (04/12/2012) - Went to the Cardiologist today. The good news is that he is happy to see that Olivia is growing. The bad news is that she is now starting to show signs of infant heart failure (rapid breathing, a "gallop" heartbeat, distended liver). As a result, we decided to increase the Lasix from 1X a day to 2X a day. FWIW, he did say that she was "doing reasonably well" given her heart disease. I also learned that getting her out to two months of age is very important, because performing the surgery before that time can interfere with natural changes in pulmonary physiology that occur during that time (e.g., natural reduction in pulmonary vascular resistance). The risks of side effects of the surgery go way down after that point too. Already starting to look at doctors at Boston Children's. That in and of itself is a bit nerve wracking (it makes the whole situation a lot more "real"), but at least it is giving me something to focus on.

New pic:

What a beautiful girl.

 

[Dr. Zaus]

Bump for update #2

She's beautiful, I've got a six month old girl; this could have been anyone of us, this made me cry. I'm praying for her and your family.

 

[bfdd]

Good luck man, hope for the best.

 

[Syn]

Hang in there I know it's hard.My youngest son was born with Wolff–Parkinson–White syndrome.When he would have attacks you would have to smother his face with a ice pack to bring him out of it.When that didn't work he would have to go into the ER where on two occasions they had to flat line him and bring him back to restore normal heart rhythm.It's hard seeing your kid's heartbeat go flat on the monitor.We fought with it for 5 years until finally the only Dr. in the region at the time at Children's Hospital Birmingham cleared him for corrective surgery(his heart and vessels needed to be a certain size).

Now he is a normal 14 year old driving us crazy.Never had to take another med or anything since he was 5 years old.

And on Nov. 10th 2010 my 10 year old girl was hit by a truck while crossing the road.It was a direct impact to her head and she received massive head trauma.She was spending the night with a friend for a long 4 day weekend.I rolled up on the scene before the ambulance got there on my way home from work.Words can't describe seeing your free spirited baby girl laying on the road in blood not responding to anything.They called in air rescue but I beat them to the hospital which was 1 hour away from my house.They lost her once on the way there and nearly lost her when they did emergency brain surgery.She was in a coma for 2 weeks and everyday of that two weeks was touch and go.

She will never be the same as she was,she will never climb another tree and can only ride a bike with training wheels.But after nine months of physical,speech,and occupational therapy she is able to walk on her own and go to school now.She had to relearn everything all over again and can't remember a good chunk of her first 10 years on this earth.She is 12 now and my inspiration,I used to be her hero but now she is mine.Be strong,miracles do happen.Sending prayers your way.

 

[Darkstar757]

Aww she is beautiful. You are still in my prayers bro.

 

[Sho'Nuff]

Bump for update #3 (05/04/2012)

 

[Azraele]

Bes t of luck with the surgery. Is the enlargement permanent?

 

[crashtestdummy]

Best of luck to you! I can't believe that I never saw this thread earlier. I'm so sorry you guys are being put through this nightmare. I've got a lot of connections to that hospital. They're the best of the best.

Not that there are many silver linings to this, but the one advantage to having a VSD so large is that at least you guys know it now. A lot of people have very small defects and never know it until it gives them a stroke (a la Tedy Bruschi).

 

[digiram]

Best of luck with everything... don't know how I would even handle anything like this.

 

[Sho'Nuff]

Bes t of luck with the surgery. Is the enlargement permanent?

Wrong type of defect. She has a VSD, which is a hole in the septum (muscle wall) between the two ventricles. A patch is put in during surgery to close the hole. It should be permanent, as the patch is impregnated with a compound that encourages cellular ingrowth.

Edit, just reread your post and realized you were asking about the enlargement of the left side of her heart. That should be temporary. Once the patch is in, it should return to normal size.

Sorry for the misunderstanding. Though you were talking ab out another type of heart defect.

 

[Sho'Nuff]

bump for updated

 

[sixone]

Update 05/16/2012

I wish I could report that things are going well, but unfortunately they are not. About two weeks ago, my daughter decided that she was no longer interested in eating. She has gained a whopping two ounces in the last two weeks, and exactly 0 ounces in the past 7 days. Not good, considering that she needs to gain 2 lbs to have a good chance of making it through corrective surgery without significant problems.

While I have not been able to contact her cardiologist yet today, I am certain that we will be headed to the hospital this afternoon to have an NG (feeding) tube placed. As a former EMT, I know that NG tubes are not really a big deal, though they are uncomfortable. But as a father, I am nervous, worried, and downright scared for my little girl. I don't think I have every felt this helpless. Two steps forward, three steps back.

I'll post as things develop and when I can actually bring up the nerve to write more.

 

[rcpratt]

Damn. Hope the feeding tube gets her weight up.

 

[ixelion]

I'm sure she will be fine, babies are born with worse defects and have survived just fine.

 

[rudeguy]

Payers going out to your family...

 

[clamum]

Wow. Sorry to hear OP. I hope she gains some weight and the surgery goes well. Stay strong for your wife.

 

[CurseTheSky]

Best of wishes and best of luck. I hope everything turns out well.

 

[MrChad]

As a father of 3, I cannot imagine what this must feel like for you and your wife. Stay strong and stay positive, and I wish you the best of luck for you and your daughter.

 

[notposting]

Will keep praying for your family. Just got an email from sister-in-law, a friend of theirs gave birth last night--an hour later and their child was gone. I can't imagine being in either of your positions as a parent (we have a little boy ourselves).

Can be hard to get the weight on...our little boy is pretty lean and doesn't pack the weight on at all. Is there any waiver process at the hospital or alternative hospitals to look at?

 

[kevman]

I'm sorry to hear about what Olivia's going through. We lost our first one shortly after she was born. You are on the right path and I pray that all works out for you and your family.

 

[alkemyst]

personally I don't understand that cut to her neck even with the cord wrapped.

I also don't understand how many asshats above are rising to this, but if they are genuine so be it.


I'd get a second opinion on everything.

 

[Sho'Nuff]

personally I don't understand that cut to her neck even with the cord wrapped.

I also don't understand how many asshats above are rising to this, but if they are genuine so be it.

I'd get a second opinion on everything.

The cut on her neck was incredibly minor, and healed in a matter of a few days. Relative to her heart disease, it is a nonissue.

Not sure what you mean by your second comment. But if its derogatory to the kind people who are trying to support me, please take your comments elsewhere.

As for second opinions, we have gotten them. We've seen several cardiologists, and all have confirmed the diagnosis. Heck, the murmur from her defect is so loud that my wife and I can easily hear it. In any event, Boston childrens will repeat all tests the day before surgery. Again, to confirm the diagnosis and treatment plan.