At my 24 week appointment it was just a short routine appointment. They listened to his heart as always and measured my belly and told me what was going to go on at the next appointment, the glucose test. The doctor also said at my next appointment (28 weeks) I would get another ultrasound because they couldn't see his heart good enough on the anatomy scan. He said not that they could see anything wrong, they just couldn't see it good enough. He gave me the drink for the glucose test so that I could drink it at home and come in for the blood draw and appointment and not have to wait an hour there.
I was really nervous for the glucose test. I'd heard horrible things about it. And I was really scared I wouldn't pass it and I would have to eat certain things. I didn't know what I would eat if I had it. I thought "it'd be my luck I would have gestational diabetes and not get to eat what I want" I was so scared.
Matt went with me to that appointment to help calm my nerves about the test and because we were having another ultrasound. The glucose test wasn't bad at all, super quick and easy. The doctor had already seen me and did his routine. The only thing he said was my hemoglobin was a little low and I needed to take extra iron and he gave me some samples. I reminded him we were suppose to have another ultrasound to look at his heart and he put us in line for that. Me and Matt waited for that and I told Matt to watch my belly. It was twitching around with him moving all over. That's the first time he'd really seen my belly move. They called us in to the ultrasound room and we walked over to go in. I remember the lady at the desk telling the other one she would do the ultrasound "it was only to look at the heart". We went in and she did her thing. We made small talk and me and Matt were just happy to see our baby again. She looked at his heart a while and kept moving the probe all over and said she just couldn't see it all. She did look at it a while though. She finally got done and said she would go tell the doctor. I started getting a little nervous about why she needed to tell the doctor anything. Matt tried to calm me down and said it's ok. The doctor came in and said that they still couldn't see all parts of the heart good enough and that they were going to send us to see Dr. Allaire for an ultrasound and that they have a better machine and can see everything better. That's what they specialize in. Basically a level 2 ultrasound. I started getting a little panicked and asked could something be wrong and what could it be? The doctor said he wasn't sure, but that Dr. Allaire would be able to tell anything. They got us an appointment to be sent over right away. I started crying on the way out of the office. Matt was still calm and trying to calm me down because they hadn't said anything was wrong, but he was still a little bit nervous I could tell. We got Dr. Allaire's office and waited a little while before a lady came and got us and started the ultrasound. She looked at everything in great detail and told us what she was looking at. I had asked her small questions like when she mentioned the cord I asked does the baby get wrapped in the umbilical cord. I was trying to stay calm. Matt was sitting near my feet watching the screen.
Dr. Allaire came in while she was still scanning. He started looking at the heart right away and about a minute later said that he did see something wrong with the baby's heart. My heart sunk and I looked over at Matt sadness stricken as he walked over to sit by my head and hold my hand. The doctor went on to say that the baby's left ventricle was not developed and that this was a complicated heart defect. He said he would diagnose it as Hypoplastic Left Heart Syndrome (HLHS). He said there were other things like a couple of the valves weren't developed. He was telling us so many things my brain went into override with all the information and emotions. He also told us that these type heart defect can be linked to genetic defects. I looked over at Matt and my heart sunk again even further. (For those that don't know, one of Matt's sisters has Down's syndrome). We had opted out of the genetics test at 12 weeks because we didn't want to worry about it and it wouldn't have changed anything. The doctor was giving us all of the information at once and I was in shock. I was crying. I had a lot going through my head, "Is he going live?" being the main thing. He did tell us that the baby would have to go through surgery after delivery. That there was a 3 stage heart procedure that baby would have to go through. One at birth, one at about 3-6 months, and one at 3 years. He also told us that I could still deliver vaginally, I wouldnt have to schedule an induction as of right now, and that I would be able to deliver at the local hospital still that they would transport him to Egelston, the children's hospital. Information overload! He told us we could get genetic testing done, an amniocentesis or a blood draw. We decided to go ahead and get the blood draw while we were there. We sat it small room on a couch and I cried for a while while we waited. Matt was researching HLHS on his phone and trying to be strong and calm me down at the same time, but he was upset too. I felt like we had been thrown in a whirwind and our world was coming apart. This is when the 'Why us?" feeling began. Dr Allaire set us up an appointment with a pediactric cardiologist, Dr. Sharma, for as soon as he had an opening. He said they would be able to tell us for sure everything that was going on and the positive diagnosis. Dr. Sharma's main office is in a different town, but he would be able to come to his Gainesville office just to see us the next morning.
We left Dr. Allaire's office and I cried more.This huge thing had suddenly been put on us, our baby's life was in danger. We weren't sure what all of this meant. We just knew we wanted to keep him and love him and let him be able to live his life. We were already so attatched to him and now knowing this and having to fight for his life, I'm pretty sure we're attatched to him even more. We were both just in shock and right away scared for our baby. I felt sick. I hadn't ate all day because of fasting for my glucose test. We went to Chickfila and ate. We both barely ate any of our food. We still had to tell our parents. Matt called his mom and told her while she was at work. We went by my mom's house because she was off that day. She instantly started crying and we tried being strong for her telling her he would be ok and about all the surgeries. We went home and talked and I cried and rested. But I couldn't let my mind rest. I called and told my family and texted my friends. I was very emotional. By that night I had already had so many people tell me they were praying for all of us and so many peoples support it was amazing.
The next day we were the first car at Dr. Sharma's office. We waited for them to unlock the door and went in and waited. As soon as Dr. Sharma came in we came back with him. We went in the ultrasound room and Dr. Sharma looked at Coleman's heart for about an hour. He looked at every detail of the heart so he could see exactly what was wrong. It took even longer because Coleman was being a wiggle worm. After he got finished looking we went and sat at a table with him and he explained everything to us. He had 3 print outs of hearts. He showed us a normal heart. He showed us a baby's heart, a baby's heart has holes that stay open until a few hours after birth. And he showed us Coleman's heart. He said Coleman does have Hypoplastic Left Heart Syndrome, the left side of his heart is underdeveloped. He does not have a left ventricle, the main pumping chamber. He said his mitral valve is extremely small. He said he has double outlets, the blood does not circulate like a normal heart and the blood mixes together wrong. He said his aorta is a little small. All these things related to HLHS. He said HLHS is the most severe form heart defect he could have and that it is fatal without surgery. He did say it was a little more mild because his aorta is exteremly small. He explained the surgery to us, but it was complicated so I won't even try to type it. He said at birth him or one of his colleagues would be there and that Coleman would have lines put in him to keep the holes open and meds ran. He said I would still be able to deliver at the hospital here that it wasn't an urgent right away thing because of the lines. They would be able wait until a bed opens at Egelston, within a couple days, to transport. He told us there were 2 or 3 doctors at Egelston that specialize in pediatric cardiology and one would be doing the surgery. He said recovery time varies with each baby so it would depend on him. We asked a few questions and he could tell we had already done some research and seemed more prepared for what he was telling us. He said the pregnancy is high risk now and I would have appointments more often with my Ob to do non stress test, to monitor baby heart rate and contractions, and more ultrasounds there. He also wanted us to follow up with him in about a month so that he could do another ultrasound and make sure everything is the same. We felt like we had asked all we wanted and he did a good job explaining things. We felt more knowing about what was going on, but of course still scared.
I will update more later about more doctor appointments I've had and my test results and ultrasounds and my emotions and feelings. I wanted to get the main part of the background down tonight before bed. If I left anything out about Coleman's condition or the delivery or whole process that you're curious about, let me know and I'll be happy to answer it. I really don't mind talking about it at it. Yes, I'm emotional, but I love talking about my baby :) and I would love to help raise awareness about CHD and Coleman's condition.
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