Doing Well at Home

Believe it or not, our sweet girl came home from the hospital on post-op day 6!  Yes, you read that correctly - on Day 6 after her Fontan - she came home!!!  The best part - she has done well!  We are so thankful!

On Wednesday, post-op day 6, the doctors were on the bubble for sure.  Olivia had a pleural effusion and it hds increased since her chest tube had come out the day before.  She was on a lot of diuretics (still on lots of those) and they usually don't send patients home on so many.  They debated and debated and finally agreed to let us go.  BUT, we had to agree to come back the VERY NEXT morning for an appointment to be sure it was no worse.  They told us not to even unpack b/c we might be re-admitted immediately.  We were just thankful for a night in our own bed and for our girl to have a little normal.  Mommy was up and scared to death all night!!!  I even took a video in the dead of night of her breathing just so the doctors could listen to it the next day.  They had told us to keep an eye on it and boy I did!!  Her chest xray the following day showed to be a little worse, but clinically she was still presenting okay and not symptomatic.  They said she would be fine to take home, but we had to come back the next Tuesday for another chest xray.  Thankfully my mom was still in town to help out.  We kept Olivia in a bubble!  They said she could go outside and breath fresh air, but no hanging out with lots of children.  We went back the following Tuesday and she did great.  Her chest xray was a little better and they decreased one dose of her diuretics - even though we are still on all 3 of them.  She was and is still presenting okay and the effusion is not appearing to bother her.  We just have to keep her well until it completely goes away.  We have another appointment next week.

Emotionally, Olivia is doing better.  They told us she would suffer from post-traumatic stress and we definitely see it.  Because she can't express verbally everything she is going through, she is acting out a bit.  She wants mommy almost 100% of time.  Don't get me wrong - she still loves her daddy - she just wants to be touching mommy at all times :).  That means even at 2, 3, 4, and 5 am! :):):).

We are now in the midst of Hurricane Sandy!!!  So, at least there is no temptation to get our girl out :).

Julie

The Road to Recovery Begins Now...

Well, it is over - yet, it has just begun.  As I write to all of you, it is 4am and I am sitting in a "not so comfortable" sleeper chair in a 4 pod room on the 6th floor of the CICU at CHOP (Children's Hospital of Philadelphia).  We are blessed.  We are tired.  We are two proud parents of a very strong and very weak little Olivia.
I think the hardest part has been seeing my little angel want to cry but not quite have the energy to do it.  She is so tired, hurts so much, and seems like she's in a bit of shock.  It's 4am of post-op Day 2 and we aren't quite sure what the day holds.  Will it be a tough day or a much better day?  We pray her chest tube will get to come out this morning.  Although I'm not looking forward to that happening, it will make it so much easier on her to get moving.  Her bleeding is still more than I think they like, so I'm not sure we'll be lucky enough to have it removed.
We attempted her first walk yesterday which basically resulted in mommy carrying her around the unit for 1 lap - her little body just wasn't quite ready.  We got her to stand for a brief moment, but she wasn't very happy about her accomplishment.

Getting ready for the big walk

She is so strong!  She has been such a brave little trooper.

Great news!  We were told last Thursday that Olivia would need a blood transfusion as part of the bypass machine.  They told us she was O+ and Danny thought that he was a match, but wasn't 100% sure.  If he wanted to make a direct donation for her, he would have to do it on the Tuesday before her surgery b/c they only use blood that is 48 hours old or less for the bypass machine.  On Tuesday, we were still unable to confirm his blood type, but we did confirm that I am O+ - YAY!!!  We both decided to donate - JUST IN CASE!!  On the morning of surgery - they told us they had received BOTH donations bags - meaning that we were BOTH a match!!!!  They only gave her one bag during surgery, but after more bleeding than what they expected after surgery, they ended up having to give her the second bag!  So, she officially has both our blood running through her precious little body!!!  We were 100% her parents regardless, but we feel honored to have been able to do that for her!!! :)

Friday, post-op day 1, was tough but it's over!! :).  Every bad moment we have is one bad moment behind us.  Danny and I are sleep deprived and emotionally exhausted, but if our little girl can handle what she's going through -so can we!!!  Our family support has been incredible!!!  All our parents came up prior to surgery and also my 1st cousin, Tracy, and my best friend in world, Natalie.  My precious friend and co worker, Beth, brought us dinner last night from my company.  We are so incredibly humbled to have such wonderful friends and to feel so supported!  On the morning of surgery, an elder from our church along with our new pastor also came to pray with us before the surgery - so honored!

All in all - life is hard, but God is good!  Bing is on the road to recovery.  Every bad day we experience is a bad day behind us and one day closer to seeing that little personality we love so much.

And just for pure sweetness:

Been Way Too Long - Surgery Coming

It's hard to believe that we are now less than 1 week away from Olivia's surgery.  It will take place at Children's Hospital of Philadelphia (CHOP) on Thursday, 10/4/2012.  While we are very grateful and thankful to be here and to have her at one of the best pediatric hospitals in the world, the thought of anything but a perfectly successful surgery still terrifies us to think about.  We have a lot of family and friends coming up to be with us for the surgery, and we are very thankful for that too.

What Olivia has:

Single Ventricle Heart  -  her heart only has one pump where normal hearts have 2
Asplenia  -  she has no spleen...she was born without it.  This makes it more difficult for her body to fight infections.
Heterotaxy Syndrome  -  some of her organs are not in their "normal" location.  For her, it is her liver and stomach.
Cyanosis  -  referred to as "blue babies" due to low blood oxygenation, causing the hands, feet, lips, etc. to often have a bluish color

Normal Heart Function

In a "normal" body, the blood comes from the body (depleted of oxygen) back to the heart.  The heart pumps (one pump) the blood to the lungs to get oxygenated.  The lungs send the oxygenated blood back to the heart.  The heart pumps the oxygenated blood back out to the body ( 2nd pump).

Olivia's Heart Function

Since she does not have a normal 4 chambered heart with the proper divisions and function, the blood from her body (deoxygenated blood) was coming into the heart and mixing with the blood that was coming from the lungs (oxygenated blood) and a mixture of each was flowing to the lungs and back to the body. 

1st Heart Surgery (in China)

That surgery was called a bidirectional glenn.  That surgery rerouted the blood from the upper half of her body straight to the lungs by connecting her Superior Vena Cava to her pulmonary artery.  This reduces some of the work on the heart and makes sure that the deoxygenated blood from the upper body is going to the lungs to get oxygenated before going to the heart and then out to the body.

2nd Surgery (this surgery at CHoP)

This surgery is called a Fontan.  This is the 2nd surgery, intentionally done in phases, and it does the same thing as the 1st surgery for the blood coming back from the lower half of the body.  This is done by connecting the Inferior Vena Cava to the pulmonary artery.

The goal (as I understand it) is to reroute all of the blood coming back from the body (oxygen depleted) straight to the lungs to get oxygenated, then to the heart, then the oxygen rich blood goes back out to the body.  This prevents the mixing of the oxygen rich and oxygen depleted bloods.

Well, that was probably a lot more than you cared to read, and hopefully, it is factually accurate.  It is at least the way that I have come to understand what is happening and what they are going to do to correct it.

Now for an update:

Olivia is doing great!  She is growing and learning and has developed an incredible personality.  She has really come a long way with her speech therapy.  She is now able to put a lot of words, phrases, sentences, and thoughts together.  She is able to recognize and say her letters of the alphabet, but not say all of them in order.  She is working on counting now.  She is able to get to 12, but she leaves out the 7.  We are working on potty training and that is going very well.  Best of all, with Danny staying home with her, we have been able to reduce her exposure to other children with colds, which has reduced the number of colds she got and the length of time it took to get over them.

Please keep us all in your thoughts and prayers!

Lots of New Pictures :)

 Okay - we've now made this mistake twice - posting pics before we write!  When we do that - we can't put the text first - oh well!  Hopefully this post okay. :)

We've had a big past couple of weeks.  DeeDee and MawMaw came up June 1st and leave leave tomorrow morning :(.   Clearly i wrote this a couple of weeks ago and never posted :(

The last weekend our moms were here we had a photographer come to take family pictures.  here are some of the pictures.