Finally Home and an Update on Addison's Heart

After weeks of waiting, we finally got orders to come back to Houston. We went through out processing everything that had just been in processed and got on a flight to come back to Houston. As you might imagine, the flight home was somewhat uncomfortable for me at 7 months pregnant but I made it! And it was worth it! We took a cab from the airport to the car dealership where we had put a car "on hold" since we had sold our second car before we left. That night we came over to see the house we had closed on a few days before. Thank goodness we actually liked it! We will really like it when all of our furniture comes back from Italy in mid August. A few days later I flew to Midland where I spent some much needed time with my family. Both my mom and Curtis came back to Houston with me the following week to help with some things at the house and also to be there for my first round of appointments at Texas Children's. What a blessing it was to have them here. 

Addison with her toe in her eye at 30 weeks

The first round of appointments at Texas Children's consisted of another echocardiogram of Addison's heart, a meeting with a cardiologist, an ultrasound, an appointment with a maternal fetal medicine specialist and a few days later an appointment with the cardiac surgeon. Let me start by saying that the whole process at the hospital the first day was amazing. I was blown away by the timeliness of the staff and the sincere care I felt by everyone we met. People were kind and made us all feel like individuals. We weren't just another case to them and that is something I don't think you would get everywhere. 

These appointments gave an update on how Addison is doing. We learned during the echocardiogram that her heart still has only one ventricle. Her specific case (only having the left ventricle) is very uncommon (.1% of all congenital heart defects) but they can still work with it. Another complication has come into play though. Her aorta—which supplies blood to her extremities—is very small. Right now it is not an issue because babies in utero have a tube that takes oxygenated blood to their extremities. This tube closes though within the first 24 hours of being born. So, when Addison decides to enter this world, she will start receiving PGE through an IV almost immediately and this will trick her heart into thinking she is still in utero and will keep the tube open. From there, she will be reevaluated and will most likely have open heart surgery within the first week of life. This is different from what we originally thought but I know now that nothing will be for sure until she is born. Even though medicine and technology are both very advanced, it is hard to measure anything perfectly on an active baby in utero. It is amazing to me they can measure anything in her heart at all!

This past Thursday, I went back for a second round of appointments. This time we talked to a neonatologist, a genetic counselor, had another sonogram and toured the Neonatal ICU and the Cardiovascular ICU. 

The neonatologist explained that when Addison is born, I will get to see her briefly. She will then be hooked up to whatever she needs to be hooked up to (oxygen, IV, etc.) and will be placed in an incubator. From there Winston will go with her to the NICU where she will get situated in her new home. Like I said earlier, she and her heart will be reevaluated and decisions will start being made about what will be done next. 

The NICU and CVICU tours were hard and emotionally draining. They made things very real. In both ICUs we saw babies of all sizes hooked up to different tubes, some on ventilators and all fighting for a chance at life. In just a few months we will be there with Addison and seeing what it will be like is hard to swallow. This was not part of my vision. Having my baby taken from me at birth and being hooked up to machines and taken away to a NICU is not what I had in mind when I first found out I was pregnant. But - I am so thankful. We could be in a place or time when they wouldn't even know she had a problem with her heart. I could be all alone without the support of family and friends. I could be a single mom wondering how I am going to pay for all of the upcoming medical bills. But that is not the case. We have some of the best doctors at our fingertips, all fully paid for by medical insurance provided to us by the Army. I have wonderful support of family and friends. I have a loving husband who is truly amazing. And more important than anything else, I have my faith in Jesus Christ. 

Addison at 32 weeks

At this point all we can do is pray. We are praying for miracles and know that God can perform them. We are praying for Addison to be a fighter. We are praying for doctors, surgeons and nurses to make the right choices. We are praying for peace. We ask you to please pray with us.