We toured the NICU at the hospital I'm delivering at and talked to one of the neonatal doctors. It was interesting seeing the NICU and some of the babies in there. They all looked so tiny. And some hooked up to so many things, I thought, "that will be our baby". We talked to the doctor and she just went over some things with us. I was a little nervous because I wasn't sure they would have had any HLHS babies before. She said they have had them before, not many, but have had them. She said there in the NICU was where he would be after delivery and they would start his lines and meds there. She said Matt will be able to go with him. It made me feel good to know Matt can go with him and he'll at least have his daddy close while they hook him up. And Matt will get to visit him with other visitors and I will get to visit him sometimes. It was nice to get a better picture of what will happen and where he will be!
I see my OB doctor and have NST (non stress test) twice a week, in the same appointment. I saw them last Monday. The NST measures baby's heart rate with their movement. Little stinker was moving so much he moved away from the monitor a few times and kept having to be adjusted, but in the end it was all normal. I had blood drawn just to check for preeclampsia and it came back normal.
We saw Dr. Sharma (pediatric cardiologist) last Wednesday. It was just a follow up appointment for him to look his heart over again with ultrasound/echo and make sure everything was the same as last time. Dr. Sharma is really nice and asked how we're coping with everything. Doing the best we can. It took him a long time to look over his heart because Coleman kept moving, flip flopping back and forth. He would find what he was looking for and be about to take a picture, then Coleman would flip over. Dr would say, "Ok well we'll look at this part then". He had to zoom out and back in every time he moved to keep up with what position his heart was in to tell what was what. And to top off all the moving, Coleman got hiccups lol. I smiled because that was the first time I'd been able to feel him have hiccups and I could see them on the monitor, his whole body would jump about every 10seconds. I was excited about it. The doctor wasn't so much lol but he was very patient with everything and never once got frustrated. My little wiggler put him to work! During the echo he had said Coleman's aorta seemed an OK size and that at least they won't have to reconstruct one for him in surgery - a little good news. But after he was finished he said he reconfirmed he has hypoplastic left heart syndrome and it's still a severe thing. He told us again that him or one of his colleagues would be on call and come at delivery to check him and do an echo on him. He answered some questions we had. One main question I asked was if I was going to be able to hold him before they took him. He said I would be able to hold him as long as he's not in distress, as a normal baby. Me and Matt would both be able to hold him. That made me so happy and tear up. I want to get to hold my baby!
Last Friday I had another OB appointment. I was seeing Dr. Cox, first time I'd seen him before. They always measure me and listen to his heart. He said his heart rate was high, about 188, and he asked if he'd been moving a lot because that could be the cause, and I said yeah a little. So he said he would see on the NST. During the NST Coleman's heart rate stayed about 185-202 the whole time, higher than a normal rate. I was praying, "God please don't let anything be wrong with him". The nurse came in and checked my temperature, it was 99.5. She said the doctor was looking over my NST (they can check it from outside the room). I was hoping nothing was wrong. The doctor came in and said his heart rate was still high consistently. He said he called Dr.Allaire to consult him about it and if it could be related to his heart defect in any way. Dr. Allaire said no not likely and asked if I was sick and to check if I had a fever. So that's why he got the nurse to take my temp because I hadn't said anything about feeling bad. I've had a cold off and on since I've been pregnant, I felt ok and figured I was getting over a cold, so I didn't mention anything. He said a fever can cause the baby's heart rate to be high/tachycardia. He gave me Tylenol and said he would keep me on the NST monitor another 20-30mins to see if it helped, if not he said he would send me to this hospital for blood work to check my white blood cell count for an infection, and to be monitored for a couple of hours. I sat and watched the monitor longer and Coleman's heart rate stayed high. Dr. Cox came back in and said he was sending me to this hospital for the blood draw and to be monitored for a little while. He said he honestly thought it was just because of my fever and that I would be fine to leave within a couple of hours, but he just wanted to make sure. I asked how this could affect me or Coleman and he said he wanted to give me the worse case scenario so I wouldn't be wondering what would happen. He said worst case scenario, Coleman's heart rate won't go down and that puts the baby in distress, they would have to deliver. But he said he really didn't think it was going to be a worst case scenario, he really thought it would be fine in a couple of hours and he wrote me a prescription for sinus infection.
I ate something really quick because I hadn't ate lunch yet and then went on to the hospital and met my mom there. I got into a gown and all hooked up to their monitors and we waited. They came and drew my blood. They said I had an irritable uterus, it was contracting about every 5 minutes, but not a constant time and not anything I could feel. We talked to the nurse I had for a long time, she was really nice. I told her about his heart defect and she told me a story of a little girl she knows with something similar and how she was doing really good. I asked her if they put all the babies born there on pulse ox monitors (monitors heart rate and oxygen level), and she said no she didn't think so.
I had read CHD/HLHS moms getting petitions signed and passed to make hospitals do this because it can show that a baby has a heart defect. A lot of heart defects aren't caught until after birth and sometimes that's too late. A simple, painless test could save a baby's life, and most hospitals don't do it.
Anyway, we waited a little while and the nurse came back and said I was good to go home. Coleman's heart rate had came back down to normal and was doing good and what it was supposed to be doing. She also said my blood test was normal. So, his heart rate was up because I had a fever. I needed to take the antibiotics Dr. Cox had wrote for a sinus infection, take Tylenol for fever, drink plenty of fluids, and rest.
This baby's not coming out yet!
Matt didn't get to come to the hospital while I was being monitored because he was at work and I didn't want him to have to leave. We need him to have as many hours saved as possible. He called and text many times while I was there though! He's nervous for anything happening to me or Coleman. He has been very good at checking on me and making sure I feel ok and not doing too much. He doesn't want me doing anything! I'm so blessed to have him. Such a great caring loving husband. He really keeps me together through everything too!
I followed up with Dr. Cox today. I am now 34 weeks. He was glad everything was ok like he thought. He measured my belly and asked when the last time anyone had measured him was. I told him Dr. Allaire did last and I laughed and said he feels big! He said yeah he kinda does. He looked it up and said his last measurements were good and average so he wanted to check my fluids to be sure they were ok too.
So I had a quick ultrasound to check my fluids. The tech was measuring everything and had it where you could only see the back of his head. She said he has hair. I said, "He has hair?!". She said yep and went back and showed me what she said was hair after she said my fluids were good. I laughed and was so happy. I've always hoped he would have hair. I told Matt a couple days ago looking at the back of his head with his hair stick out under his cap that I hope he was hair like his is full and curly in back. Coleman may not have a lot of hair, but at least he has some! My NST was good too, and for once I had to try to make him move enough during it. The doctor said everything, fluid and NST was good. He said, "I bet it's great for you to hear anything is normal!". I said, "Yeah it's true, we barely hear anything is normal anymore.". That was probably my happiest ultrasound because I was so genuinely happy and it was such a good surprise to have after everything else going on.
So we had some scares, but some small happy news too. It was good to get some questions answered and have a couple of things to smile about, like holding him and him having hair. The little things make me so happy. I still struggle of course with my feelings and about certain things. Things make me sad and frustrated. Things that people take for granted and I feel that they should appreciate what they're given. But I try to think their situation is different than mine and their worries are their own.
But I won't get into all that right now. I will be happy about the baby that we're blessed to have :) and no matter what happens we will always be blessed that we have Coleman. He's touched our lives and so many others already.
Praying our little heart warrior will get to grow up as a miracle and touch many lives!
