Another round of appointments

We had an ultrasound, OB appointment, and fetal echo last week. The ultrasound showed that Cora is growing normally, she's already two pounds! We got some really good 3-D pics of her. The OB appointment was fine. He just wanted to check in and see that everything was progressing normally. He told me that I'm now on the "3,3,2,2,1,1 plan so I go back on the 21st. The fetal echo was normal also, nothing new. That is both good and bad to us. I keep having this hope that the sinusoids will go away. Its so hard to think about my little girl waiting around for a heart, with her health getting worse the more she waits. If the sinusoids go away or turn out to be small, then she can have the Norwood, Glenn, and Fontan surgeries. That would make me SO happy!!! The good news was that the valve betwen the left and right chamber is still wide open, allowing the body to mix red and blue blood and pump pruple throughout the body. If that closes, it gets really hard to treat, and she'd have a much smaller chance of survival. We were suposed to meet with a cardio-thoracic surgeon and have so many questions for him! Unfortunately, he was performing a Norwood procedure at the time, so we'll have to wait until Feb. We met with a neonatologist who will be caring for Cora right when she's born. He was so nice, and we really liked him!!! He asked all kinds of questions and seemed genuinely interested in everyting. He then wrote a letter to everyone involved explaining us and our family, Cora's condition, the complications, and the expected care that she will receive. The letter was so nice, I may have to scrapbook it later. He told us that right when she's born, we'll get a few minutes with her and then she'll be taken over to Children's for an echo, cardiac cath, other tests, and medication to keep her heart open and able to pump blood to the body. He said some things that made me cry for the first time in a long time. The closer we get, the harder it is to deal with everything. He told me that Erik's job will be running back and forth between Children's and Barnes, relaying all kinds of info to me. My job will be to stay in bed and try to recover from the C-section as fast as possible so that I can get up and go see my little girl. I lost it at that point. It is going to be so hard for me to sit in bed without being able to see Cora and make sure that she's okay. I know that it won't take long for me to get up in a wheelchair to see her, but its going to feel like an eternity. I also know that Erik will do everything he can to make I know as much as possible about Cora while taking care of me in bed. Its just really hard to think about right now.

Update

We had an ultrasound and fetal echo this week and also met with the new high risk OB and pediatric cardiologist this week. There wasn't much that had changed. She is still growing normally. The cardiologist told us that there is a chance that we can have surgeries with sinusoids, so that gave us a lot of hope. They also looked at her mitral valve, which allows the two chambers of the heart to mix blood. Sometimes, this valve closes or gets really small, which can also cause problems with the surgeries. Thankfully, the valve is still open and not causing a problem. Erik and I are still keeping our spirits up. We are so thankful for everyone's thoughts and prayers. We have an amazing group of friends, family, and co-workers!

HLHS

We found out on Wednesday that our baby has what is called HLHS (Hypoplastic Left Heart Syndrome). This is a defect of the heart where the left ventricle is very tiny. It is so small that it is non functional. This is the most complicated and hardest to treat congenital heart defect. I am very lucky that we found out prenatally because some babies go home with no symptoms of anything, and end up in the ER a few days later when certain blood vessels close. If anyone wants more info on this condition, here is a website that explains it pretty well.
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/hlhs.htm

There are two options with this condition: a series of 3 surgeries or a transplant. There are benefits and risks to both. So far, my doctor believes that my child would not be a candidate for the surgeries, so when she is born, she will go on the list for a transplant.

Erik and I were totally blind sided by this info. We went in for a routine utrasound on Mon. They wanted us to go in to Barnes for a better one so they could see more. We didn't think much because the dr told us not to worry yet. The sonographer at Barnes told us what was going on. We are doing all right and just trying to keep in mind that miracles happen every day.

If anyone has any questions or anything, I would be glad to talk about this. Thanks!