Alexis's Heart

Last week was a whirlwind like I have never experienced before. Actually, it started last Friday. Last Friday, May 31, Jason and I went to the doctor to have the second ultrasound done on baby girl (Alexis). We had to go back because the ultrasound technician was unable to get a good picture of her spine the first time around. They were running ahead of schedule so I was called back before Jason was even there. A different technician than the time before (but who I have seen several times during my two pregnancies) started the ultrasound and was telling me what we were looking at as we went along. She said Alexis's head was the right size, she was still a girl, etc. But then, she started taking a lot of pictures of her heart. I couldn't remember what was normal, but she got very quiet while doing it. All of a sudden she flips the lights in and says, "I need to take this picture to the doctor, then I am going to take you to MFM." I was very confused and asked what MFM was. She said, "It is just over there. I will be right back." And off she went. Jason walked in the room while she was still talking to the doctor so I quickly updated him on what little information I had. She came back in the room and said, "Are you ready to walk across the hall to MFM?" So I wiped all the ultrasound gel off my belly and off we went. Apparently MFM stands for Maternal Fetal Monitoring... She walked us into an office and told the woman at the desk, "This patient needs an appointment first thing Monday morning for a heart anatomy scan." and she walked out of the room. The receptionist set us up with an appointment for 8am on Monday and said, "see you then!" Both Jason and I were so confused about what was going on because nobody had told us anything! We then asked the receptionist what was going on. She was surprised that the tech hadn't told us anything but said, "If nobody told you anything then it is probably not a big deal. If it was a big deal I think she would have mentioned something. It is probably just a small thing she found that she wants us to take a closer look at. I wouldn't worry about it." Then she sent us on our way. We were in complete shock as we walked back to our cars and we didn't even know what to think! Not only that, but we had the whole weekend to speculate and try to figure out what might possibly be wrong. I refused to do any research because I didn't want to freak myself out unnecessarily, but Jason decided to look up a few things. Monday morning, after a tough weekend, we were back at MFM for the ultrasound. After about 40 minutes, 10 of those focused on the heart alone, the ultrasound technician said she was going to take the pictures to the doctor and he would be in to talk to us in a few minutes. When Dr. Rayburn came in, he introduced himself and asked the technician to show us the picture that had her the most concerned. What she pulled up was a picture of Baby Alexis' heart, showing the 4 chambers. Dr. Rayburn explained that the left side of her heart, the side that pumps blood to the body, was underdeveloped. He didn't give us a name for the condition although he said he would be willing to speculate if we wanted him to. He then said he wanted us to go see a cardiologist because they have better machines and can take better pictures of the baby's heart. He also mentioned that there was a possibility we would need to deliver her out of state, but that was not necessarily a requirement. He kept reiterating that the next step was to see the cardiologist. Jason said, "Can you please give us a real-deal assessment of this? It is a big deal, isn't it? Since it is the side of the heart that pumps blood to the body..." and Dr. Rayburn said, "Yes, this is very serious. It is not the most underdeveloped I have ever seen, but it is still significant." So, the technician took us to the receptionist and has us schedule an appointment with another of the doctors at MFM, an appointment with a genetic counselor, and then to another person to schedule an appointment with the cardiologist at a different hospital. That appointment wasn't able to be made at that moment, but she said she would call me once she had something set up. Jason and I walked out of there in complete shock. We didn't know what to say or to do, other than to cry and pray while hugging in the parking lot. We eventually had to go our separate ways, Jason to work and me to pick up Levi. We both made a lot of tearful phone calls while still in the parking lot and were basically devastated. I didn't even know what the condition might be called or if there were surgeries that could be done to help fix it. I just knew that my little girl was very sick and would require either a miracle or immediate help once she was born. Over the next few days we cried, prayed, and talked to all of our family members. We also started to research. Unfortunately (or fortunately?) the only condition that ever came up when we typed in "underdeveloped left side of the heart" was Hypoplastic Left Heart Syndrome. We started to look into HLHS much more and realized it was a VERY SERIOUS condition that will kill the baby if not addressed immediately after birth. We could not be 100% sure that this was her diagnosis until we went back to the cardiologist on Thursday, but we were becoming more and more convinced that had to be it. We were hoping for another diagnosis but wanted to be prepared if that was, in fact, her diagnosis. Thursday morning came and after an echocardiogram that took about 45 minutes, the doctor confirmed she has HLHS. He then took us to a conference room on the other side of where we were, and told us to get comfortable while he went and made a few copies for us. He explained to us the surgical procedures Alexis would go through and how things would progress once she was born. He said HLHS is not treated in any hospitals in New Mexico, so normally patients are sent to Denver. He said we could basically choose where we wanted to go, if we had any family in other big cities. We told him we would look into it and see what we thought. He told us as soon as she is born she will have to go on a medication to keep a valve open that normally closes once babies are born (within a few hours or days it is completely closed). This valve allows the oxygenated blood and the deoxygenated blood to mix in the heart, sending a diluted mixture to the body and to the lungs. Once the valve closes, the left side would be responsible for sending the oxygenated blood to the body and her's would not be strong enough to perform that function. A few days after she is born, she will have to have surgery that allowed the blood to continue mixing in her heart, and the right side of her heart would send the blood to her lungs and the rest of her body. This is an open heart surgery and she will have to be hospitalized for at least two weeks, probably more, provided God doesn't heal her before then. Between 2-6 months of age, she will have to have another surgery that allows the blood from her upper body to go straight to her lungs, rather than mixing in her heart first. At 2-3 years old, she will have the third surgery that does the same thing for the blood from her lower body. They basically have to rewire the heart so the right side pumps all of the oxygenated blood to the body, and the deoxygenated blood bypasses the heart completely to go straight to the lungs to get oxygen. Once we knew here diagnosis, we were devastated, because we knew that this was one of the very worst congenital heart defects a child could be born with. There is only a 75% chance she will live until her second surgery, and even then she is not out of the woods. We are also encouraged because we know God already has His hand on her, and He is going to do great things with her life. He allowed us to detect her defect before she was born (if she had cooperated with the first ultrasound, we never would have found it because the first technician didn't notice anything wrong) and he has given us a ton of people who are praying for us and supporting us. We are praying for healing. We believe God will work a miracle in this situation, either through healing her before she is even born, or through the doctors and surgeons after she is born. We have a lot of hard decisions to make now, but I will leave that for another time. I plan to write regularly to make sure everyone stays updated on her condition. I don't know what the next step is, specifically, but I will just keep praying that God shows us what to do and where to go from here. I am confident He will do that for us! Thank you for the prayers. Until next time...