My Baby's Heart

For those of you who know Bella, you know her story but for those of you are stumbling across this here is Isabella's story (in the short version).
After birth, her pediatrician noticed a heart murmur. She was then after three echocardiograms and a cardiac cath diagnosed with Truncus Arteriosus. It is a congenital heart defect that means her aorta and her pulmonary arteries are basically one vessell. That means she was pumping mixed blood at all times leaving her in a constant hypoxic state. She was also found to have a deletion on her 22nd chormosome called DiGeorge Syndrome.
So, on February 27th she has open heart surgery to put a homograft in to extend the pulmonary artery from the aorta to allow her to pump blood the way it is suppose to. She stayed in the hospital for 17 days after surgery.
7 days at home after surgery, she was on a helicopter back to Children's Mercy with Respiratory Distress. 7 more days and we were back home. She was doing okay at home and we thought the worst was over. Then after a month at home we were back on the helicopter to Children's Mercy for another 24 day stay. Still at this time they could not give us any clear answers as to why she was having respiratory distress.
This time we went home for 10 days and then back again by med flight. They decided to finally put a trach and a feeding tube in. She was doing great for a really long time. She stayed for 47 days and was on her way home. We really thought the worst was over this time. We went home with 24/7 nursing care with a ventilator, suction machine and the whole nine yards.
We were home for a full 4 days when she when into septic shock and needed flown back out to the hospital. This time she was in really bad shape. I remember sitting with my mom telling her I thought this was it and that we were going to loose Isabella. This was July 30.
So back in the PICU. On August 1st she was still very critical and she coded. They did chest compressions for approx 20 seconds and came back out of it. She has now started having seizures.
From the sepsis and the 106 temp and lack of oxygen she suffered some brain damage. Doctors tell us she is now blind and deaf. Matt and I have noticed that she is responding to us when we talk to her and she is responding to other noises around her. They are telling us now that she can see lights and shadows.
For the most part she is doing really well right at this moment. The cardiologists say she has small pulmonary vessells that lead out to her lungs and that her truncal valve is insufficient and the homograft they put in is insufficient. So right now our only option is to wait and let her grow. She has gained a pound and 1/2 in the last week!!! That is saying a bunch because we were stuck on 8 pounds for 4 months.
So right now I am sitting here in the PICU with Isabella and my husband. I was inspired to create this blog by some new and dear friends of ours Micha and Jason. They also had a baby with a heart defect but sadly they lost her last night as she passed away to be with GOD.
I want to thank all of our family, friends and all of the others who have been praying and raising money for us. We love each and every one of you.
Love
Matt, Megan and Isabella