our baby girl has a very special heart.

Written on 9:40 AM by gracefully discovering:

It has been quite a while since I have taken the time to share my thoughts with the world. This past month has been an emotional roller coaster for my family and I. I am very hesitant to write this post right now and have been for the past month, but I know that I can only find strength in God, and with your prayers, maybe that strength and peace will come sooner. I have been given a bit of inspiration by reading blogs of other moms who have been or is currently going through what you are about to read about. Thanks Leigh Anne for pointing me in the direction of these women.

So here goes...Around our 12th week of pregnancy, we went to visit our Twin Specialist and he noticed that Fat Fat had some extra fluid on the back of her neck. He told us that this could mean a couple of things: it could be a heart defect or a sign of a chromosomal problem like Down Syndrome. He mentioned that her heart looked abnormal but that it was way too early to tell. We then took a blood test to check the risk of the fluid being caused by chromosomal abnormalities- the test came back an increased risk and they advised us to have an amniocentesis done to confirm or reject whether our girls would have down syndrome- because if Fat Fat had it, then Skinny would too because they are identical. (sidebar- skinny really isn't skinny or underweight, she is actually right on time...Fat Fat is just about a week ahead of my pregnancy schedule). That same day that we got the results from the blood test, we had an ultrasound done and a different Specialist in the office said that he was concerned about her heart too. He said that it looked like she was missing a chamber in her heart...that all four hadn't formed- but again it was too early to tell. He too advised us to have the amnio done. We scheduled the amnio- we had to wait until I was 16 weeks to decrease the risk of miscarriage since they stick a very long needle in my belly into the girls amniotic sac to get cells from their fluid.

On February 13, 2009 we go for our amnio. In order to do the amnio test, the Doctor has to do an ultrasound. While he is looking at the babies- getting ready for the test...he starts to really look at Fat Fat's heart. He spends a lot of time measuring and clicking and taking pictures...and then he tells us that it seems as if the left side of heart did not develop completely. That she has a severe heart defect and would be a very sick baby. After he says this- he is called to go and deliver a baby across the street. Mind you, he just told us that our baby girl has a severe heart defect and then he leaves and tells us that he will be back in about 20 minutes because he has to deliver a baby. SO IMMEDIATELY WE DO WHAT THEY TELL US NOT TO DO. WE GOOGLE IT WHILE HE IS GONE!

An underdeveloped left heart also known as Hypoplastic Left Heart Syndrome (HLHS) is a very rare and one of the most severe Congenital Heart Diseases that there is. HLHS is a condition in which the left side of the heart is underdeveloped, causing complications in the heart’s ability to pump oxygenated blood out to the body.

This affects one in 5,000 babies. Left untreated, HLHS is fatal, usually within the first few days or weeks of life.

There are really only two options for Fat Fat to beat this heart condition. She can have surgery and wait on a heart transplant.

The surgery involves a three-stage operation designed to re-route the blood from the lungs, through the right side of the heart, and out to the body by circumventing blockages on the left side.
Stage I (Norwood- named after her daddy..so this must be a good sign) Typically, the first operation is performed within the first few days after birth. To improve blood flow to the body, the main lung (pulmonary) artery and body artery (small aorta) are linked to make a new, larger aorta. A passage or shunt is created using soft plastic (Gore-Tex) to provide blood flow to the lungs. The wall separating the heart’s top two chambers is also removed.
Stage II (Glenn Shunt) Normally performed between four and nine months of age, the second operation reduces the workload of the heart and removes the Gore-Tex shunt. Blood from the head, neck and upper body is routed to the lung arteries. This allows blood to flow into the lungs for oxygen
Stage III (Fontan) The third operation is performed as the child begins to develop the need for more blood flow to the lungs. This surgical procedure is designed to separate the red (oxygenated) and blue (unoxygenated) blood and will improve the child’s energy levels. A wall is created in the right collecting chamber and the chamber is attached on the base of the lung artery.

This surgery doesn't FIX the problem, it just reworks some things so that she can live a normal life.

So as you can imagine I'm crying by now and Nick is of course still researching on the handy dandy Iphone. The Doctor comes back from delivering a very healthy baby and wants to look at her heart some more. He confirms that it is in fact HLHS and tells us of our options. He says very bluntly that we can do a selective termination before 24 weeks; we could have the surgery; and get on the list and wait for a heart transplant once she is born. (information overload at this point and I'm really not comprehending anything) He says that he is going to send a referral to Texas Children's Hospital so that we can get an Echocardiograph done- which is basically a more fancy ultrasound of her heart. This will give us a better understanding of what exactly is going on and what our options are once she is born.

Now, he is ready for the amnio!! And all the anxiety that I had prior to coming to his office for the amnio has gone to hell and all I can think about is my baby girls heart. Yes the amnio was uncomfortable- but it was the least of my worries.

We got the results back from the amnio and THANK GOD everything is normal- no chromosomal defects= no down syndrome. With those results, we know that at least one of the girls is healthy....and we are praying that Fat Fat pulls through and gets healthy too.

We go this Friday to get the Echocardiograph done and the closer we get to the day, the more anxious I get. The good news is that, we live in Houston with one of the BEST Children's Hospitals in the Country- so our baby girl will be in good hands. We are very lucky because people all over the Country travel to come here to have their children treated in a hospital that is 20 minutes away from our home.

I have been trying to keep myself busy at work and not think about it. It helps, but as soon as I'm alone, my mind starts to wander and I think about her. I have not been able to sleep through the night since we have found out about her special heart. I feel helpless because there is nothing that I can do to protect her from this. I can not fix her heart and make it better. Our Pastor preached about "worrying" and not trusting in God...and I felt like he was talking to me. But it is truly difficult to not worry about our precious baby girl. It has been so hard not to think about what she will have to go through- if she will make it, or what kind of life she will have. I KNOW that God is able and will not put more on us than we can handle- and that He never makes a mistake...but the part that worries me is not knowing what His plan is...I KNOW that he is a miracle maker and can fix it, but is that what He wants to do? I keep looking and asking God for peace and understanding through all of this. I know that we can not control what HE has in His plan...and Lord knows that I wouldn't want to....I just pray that whatever the outcome is-that He gives us the strength to deal with it. I have had so many different emotions and feelings...many of which I have never really experienced before, which is pretty scary. Nick has been so strong through all of this for me- and I hope that I am able to return the favor to him when he needs it- because I know that he will. But the good thing is that for the past week and a half I have been able to talk about it without tearing up. So I guess I'm getting a little bit stronger.

I hate to keep going on and on with this post...but I just ask that if you are reading this and you believe in God and the power of prayer that you please add our baby girl to your conversations with your God. Please also pray for our families strength, peace and understanding. This is going to be a very long road and we are going to need as much prayer as possible.

Thank you in advance!