It all started when we went for our 20 week scan. We thought we were just going to find out if it was a boy or girl. Two weeks later we I got a phone call saying there were some things wrong with the scan and they wanted us to go to a specialist to have a closer look. I was worried after this first phone call but the appointment was not going to be for a week and half, so I put it out of my head and figured that it was a mistake and that everything would be ok.
We went for the appointment thinking everything would be fine. They did a long ultra sound and then said she had to review the photos with the doctor and the doctor would be in to see us. At this point I looked at Kirk and started to worry. Why was the doctor coming in to talk to us?
The doctor came in and proceeded to tell us that the left side of our daughter’s heart never fully grew. She told us that it would definitely require a surgery. She also recommended that we take an amniocentesis test to find out if the baby had Down Sydrome or any other diseases. She said it is common when the baby has a heart disease to also carry other diseases. This test is performed by sticking a long needle into your stomach to test some of the fluid from the placenta. This test is risky for the first 48 hours while the sack is resealing. So we left worrying about a miscarriage, that the baby was carrying another disease besides this heart problem and finding out what was going to happen with this surgery.
I was a mess. I couldn't stop crying. I was so far along at this point if we had found out that there were other problems besides the heart disease then we would only have two days to decide weather to more forward or to terminate the pregnancy. The thought of terminating the pregnancy in the beginning was unthinkable. As the days went on, the thought started to become a possibility. There were so many things that could happen and so many uncertainties. I was worried I was not strong enough to handle everything. I wanted to her what everyone else would do even though I know nobody’s decision mattered but ours. I was so unsure, scared, and depressed.
The test came back that the chromosomes all matched and they thought everything would be ok. We had already decided to move forward. The following week after the results came back we had our appointment with the cardiologist.
We went into this appointment thinking "ok we can get through this one surgery". We sat through another 40 minute scan. The doctor came in to speak to us. We ended up there for over a hour and half while she explained to us that our daughter had Hyper Plastic Left Heart Sydrome. This was one of six rare heart diseases. She would require at least 3 surgeries in the first year to year and half of life. The first surgery would take place in the first week of life, the second between four to six months and the third when she reaches 25 to 30 lbs. We were told the first surgery holds a 20% fatality rate. We were told that our daughter would be born and we would have ten minutes to hold her and meet her for the first time before they take her away to the NIC Unit. This crushed me even more. They would have to hook her up to a IV right away to start her on medication to prevent her valve from starting to close. She would remain in the NIC unit for those days before the fist surgery while they perform a bunch of tests on her to confirm nothing else was wrong and to prepare for the first surgery. After the first surgery she would remain in the hospital for 8 to 12 weeks.
We went home again so upset and so unsure of what to do next. We both went back to work and everything kind of became a bad dream. We had a follow up appointment with the cardiologist 4 weeks later. The doctor did not find any changes from the previous appointment. We reviewed some details from the first appointment since the day of the diagnosis was such a blur. She did find the one artery to be slightly smaller than usually. The artery should have measured 4 millimeters, however our daughter’s was measuring between a 1.5 and 1.7 millimeters. They said there was hope for this to grow, and to keep our fingers crossed because this would cause problems in the first surgery if it didn't grow.
At our next appointment 4 weeks later the artery showed growth- it was measuring between a 2.5 to a 2.8 millimeters. Again they want it to be around a 4 millimeters, but this was much more hopeful!!
My next appointment with the cardiologist was 4 weeks later. I was also able to meet with the surgeon and go over the first surgery again in detail. For the first time it started to become clear. Reality was starting to sink in and in three weeks we were going to do this. We made the plan: December 7, 2010 they were going to perform the amniocentesis test again to make sure her lungs were developed since it would be a few weeks early. If the lungs are developed then I will be induced. They said it was ok to try and deliver vaginally but if the baby even blinked a eye wrong they would move me into surgery for a C- section. They scheduled the first surgery for the following Wednesday (December 15, 2010). They took me on a tour of the hospital, including the NIC Unit and the PIC Unit. This was a wake-up call. This really was happening to us and this was coming quick. Have you ever seen an infant with a breathing tube down its mouth? That’s hard enough- try picturing it as your own child. Its devastating. I lost it again. Some of these babies we so drugged- it was unbelievably sad.
Once again went home and we put everything out of sight and out of mind. Now it is November 28, 2010 and it is hitting me hard. This is happening next week. Our bad dream is going to come to a reality. I keep thinking about all the “what ifs”. We are tired of waiting. We just want to meet our little Grace and know if she will make it.