Friday, June 28, 2013

More than we bargained for

This afternoon we had another doctor's appointment. We assumed we were just going in to meet with another perinatologist but it turned out we had another ultrasound first. I'm not complaining about that at all because I love getting to see Alexis as much as possible. However, when the doctor came in after the ultrasound she said they could see some fluid around her heart. It wasn't a ton, and it didn't make them super concerned, but it was enough that we have to go back every week for the next month to have it monitored. If it gets worse, they will deliver her early, which would not be a good thing. The doctor kept saying that we want her to be as big and strong (her exact words were "rough and tumble") as possible before she is born. We will see how the next few weeks go, but prayers for that to be resolved would be fantastic! We also get monthly anatomy scans, so we will see her at least 2 more times in her entirety before she is born. The technician was able to get some 3D pictures of her and she is looking pretty cute! We had no idea going into the appointment today what the next couple of months would bring, but apparently it is a whole lot more appointments with the perinatologist (high risk pregnancy doctor), the ultrasound technician, and the cardiologist. We are thrilled to have the chance to receive such great care, and we feel very fortunate about our situation in that respect, but it is hard thinking about what is coming up so very soon, and why all of these visits are necessary. Another prayer request that we have is for guidance in picking a hospital. We are leaning towards Denver, but only because that is really the only one the doctors talk about. We are still planning to go look at Dallas and Houston, because we want to be sure and pick the best one for our situation, and we pray that God makes it very clear where we should go. We want to make sure we follow His plan through every step of this. Thank you so much for your continued prayers and support. We will keep you updated as much as possible.

Saturday, June 22, 2013

Another echo, same results

We had another appointment yesterday to remeasure and take more pictures of Alexis's heart. (She was not cooperating this time and it took the U/S tech a little while to get all the pictures he needed because she was making it very difficult. Our feisty little girl always kicks and punches wherever the ultrasound wand is placed on my belly and it is very weird seeing her move onthe screen and feeling it at the same time.) The doctor saw the same thing and said, in regards to HLHS, she has a less severe case. We are very pleased to hear that. We talked a lot about how to pick a hospital when the time comes and he gave us his 2 cents. WE talked about Children's Hospital Colorado (Denver), Texas Memorial Children's Hospital (Houston), Mott (Ann Arbor, MI), and Texas Children's (Dallas). He said they are all very good hospitals and should not have a problem handling Alexis because of the severity of her condition. We were hoping he would really have an opinion about one or another because we are having a hard time choosing. He said they already sent their initial report to Denver, because that is the hospital they use most often, but he would be happy to send our report to any other hospital we want him to. He also offered to call any hospital we wanted to investigate and talk to the staff there about the specific statistics for HLHS as the hospital. He was encouraging in that he said the survival rate is up to about 85% through the first two surgeries, and reiterated that we should go to a hospital that does a whole lot of these surgeries all the time. We are still very confused about where to go, because we know that God will do His will in her life, but we also want the very best care for Alexis possible. We want to make sure we pick the hospital that will give her the best care so we don't second guess our decision if something goes wrong. We want to be close to our family, too, so we have their support and they are able to be there for us as much as they want. We don't want that to be the only factor we consider though. Sigh. Not sure how we are going to make this decision other than pray that God paves the way for us! Thanks for the continued prayers.

Wednesday, June 19, 2013

How are you doing?

So many people have asked us how we are feeling now that we know exactly what condition Alexis will be born with. My standard answer is, "Okay." Of course, we are not excited about having a medically fragile infant who may not even survive her first surgery, but we have decided to put all of our faith and trust in God, rather than medical technology. Of course, we know that God could use the medical technology to save her, but ultimately it is His will that will be done in her life, and we are so grateful that He already loves her enough to keep her and us right by His side through all of this. We still have not made many of the major decisions regarding her care (which hospital to go to, etc.) but we have decided we will basically do whatever it takes to be able to bring her home with us. I am so thankful that we have hope outside of our own understanding, and I know that her life will have a purpose and a meaning, no matter how long she is with us. Right now, both Jason and I feel like she is going to be with us for a long time, and we have a tremendous peace about that, but we know it is going to be a tough road through her birth and her first months of life. There has been such an outpouring of support for us and so many people have offered to help us in any way they can. What I ask for at this moment is just prayer: that she would be born healthy and that she would be healed, either through a miracle or through the doctors and surgeries. We know God is in control, but we also know that He listens to and grants the desires of our heart, as long as they are in accordance with His will. We are praying that He would heal Alexis and use her for GREAT things to further His Kingdom. She is already impacting lives and I can't wait to see how that continues once she is born. Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Proverbs 3:5-6 Delight yourself in the Lord, and he will give you the desires of your heart. Psalm 37:4

Monday, June 10, 2013

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...