Cardiac Visit 5/6/11

We had an appointment with Dr. Christine Falkensammer today and it went relatively well. Usually, the ultrasounds take about 30-40 minutes but today it was only 20 or so. After about 15 minutes it actually starts to hurt. He is a very active baby so they usually have to push on my stomach to get a clearer picture but luckily today that was not the case. Once we were done Dr. Falkensammer explained the whole HLHS process again. I think she likes to do this because she can answer any new questions that we may have. We were worried about the size of the baby's foramen ovale but it has continued to remain the same. We didn't want it to get any smaller. From the 1st to the 2nd visit the f.o. had actually improved in size. They call the small opening a restrictive atrial septum. We talked about the 2 openings of the baby's heart; the ductus arteriosus and the foramen ovale. The ductus arteriosus usually closes shortly after delivery. We need the d.a. to remain open until his first surgery so they will administer Prostaglandin to help keep it open until then. The foramen ovale usually closes around 3 months of life but with an HLHS heart they will use this opening to help blood flow for the rest of his life. They will make his f.o. a permanent pathway for blood to flow between the right ventricle and pulmonary veins.

I find that it is easier to explain with a picture. I have labeled the formamen ovale and the ductus arteriosus in orange. You can also see that our baby's left ventricle is almost non existent.

Once her explanation was over she reiterated that all the babies she has dealt with make it through the 1st surgery. They usually lose the babies that have chromosomal problems which our baby does not have. She then told us, again, that they lose most babies between the 1st and 2nd surgery. 20% of babies pass away during that time from blood clots or other problems. We are trying to stay positive and think of the 80% that make it to the 2nd surgery between 3-4 months. After the 2nd surgery the chances of losing our son are very minimal. I don't even want to know how much sleep I am going to lose by checking on him every 2 seconds. She also explained to us that there has not been any long term research on HLHS babies so it is still a case by case basis. Around 20 years ago they started saving HLHS babies and performing these miraculous surgeries so in the medical world this technology is still new and risky.

I enjoy going to these appointments only because it helps us get a better look at what we need to prepare for. The hardest thing about these appointments is dealing with reality. We live a normal life for a couple weeks then we go to these visits and we are reminded time and time again. I stopped reading my Pregnancy Week by Week book because it gets depressing. Every week they tell you what the "norm" is and it gets too frustrating. On the other hand we are doing extremely well. There has been less tears, less emotional stress and more praying going on in our home. Seth and I will never be prepared for what is to come but we pray to be strong. We take each day at a time and sometimes I really forget about all the stress. The hardest part about this is choosing a baby name. Ugh!