Wednesday, June 21, 2006

Baratz family heart story.

I found out I was pregnant in March of 2002. I had the perfect pregnancy, no morning sickness, great checkups and minimal weight gain! I was scared I was going to have horrible labor, though, since everything else was such a cinch. The real nightmare began AFTER my son was born.

On Nov 3, 2002 we went to the hospital to have our baby. I had dreamed of this moment, how perfect it would be! I watched the baby shows on T.V. and always thought to myself, "That is how it will be when my son is born." After lying in pain for a while, the nurse checked me and found out that he was not head down and was going to have to be delivered by c-section. She called my OBGYN and he came and delivered Seth Daniel on Nov 3, 2002 at 2:31 pm. He held him up and said I had a beautiful baby boy. I caught a glimpse of him before the nurse took him to clean him and do the APGAR tests, and the doctor was right, he was (and still is) beautiful! While the nurse was cleaning him, I remember her saying the he wasn't as pink as she would like him to be. I asked what was wrong and was told that he was fine, that sometimes newborns don't breathe the right way when they are first born. So I dismissed it. She got him cleaned and my husband brought him over for me to see and kiss, and then carried him to the nursery. They put the pulse ox machine on him and his O2 sats were in the 70s. My husband suggested that maybe something was wrong with the machine. So the nurse drew blood for a blood gas test and the machine was working just fine. He was taken to the NICU and the tests began. I assume the heart was the first place they checked. I was still in recovery and no one had told me anything was wrong at this point. I was waiting to get to bond with my son, just like they did on T.V. After an hour or so, a couple of doctors came in (I don't even remember their names) to recovery to tell us there was a problem with his heart, but they weren't sure what and were running more tests. They said they could probably treat it with medicines. We were devastated to say the least. They finally moved me to a room and brought me something to eat, but I was unable to eat anything, for fear of what was wrong with Seth. When he was about 6 hours old, the doctors came back and explained to us what was wrong and that he would need to have surgery to fix it. They said he had what is called Transposition of the Great Vessels (TGV/TGA), which basically meant that his aorta and pulmonary artery were reversed. So the blood that was supposed to go from his lungs to his body kept going to his lungs and the blood that was supposed to go from his body to his lungs kept going back to his body and his body wasn't getting any oxygenated blood. They also said if he had to have a CHD that this was the "best" one to have because it was the easiest to fix. That didn't make me feel any better. My son was sick and my dreams of how things were supposed to be were shattered. My only focus was on him getting well. They said they were waiting on a transport team to get there to take him to OU Children's Hospital, which was across town. They arrived and brought him to my room before taking him so I could see and touch him. My parents took pictures of him and of me touching his little fingers and toes.

My OBGYN came in the next morning and stayed with me about 30-45 minutes and just held me and let me cry on his shoulder. Afterwards, he told my nurse that if I could eat, walk and use the restroom, under the circumstances he would let me go. I was out of the hospital at 10:00 the morning after having a c-section. My family took me directly to my son. He had to be put on a respirator so all I could do was touch him. I still had not held him in my arms. I just sat and stared at him and asked what that beeping noise meant and what that one was. There were some many beeps and machines, I wanted to know what all of them were for and what all the numbers meant.

There is a parent motel in the hospital and I was able to get a room because I was not leaving without him. We lived across town, but I had to be there for him. I couldn't leave him and go to an empty house. I happened to be in the room on Tuesday morning when his little blanket was being changed. His nurse asked if I had held him yet and I told her no. She said if I could stand there and NOT move, because of the vent, she would let me hold him while she changed his blanket. She picked him up, handed him to me and I got to hold him for about 5 minutes. I cried the whole time.

We were told that he would have his surgery in probably 3 days. Well, day 3 came and we still had not met the surgeon. It wasn't until Seth was 7 days old that we finally met Dr. Christopher Knott-Craig. He came in to tell us what he was going to do to fix him. He is very soft spoken so I felt like I was straining to hear him. He made sure we understood everything, answering all of our questions before he left. Seth's surgery was scheduled for the following morning, Monday Nov 11, 2002. After Dr. Knott-Craig left, Seth's nurse told me that when she returned from lunch she would let me hold Seth as long as I wanted, even though he was still on the respirator. I think I bugged her all morning about her hurrying to lunch. When she FINALLY returned from lunch, I think I held him for about 4 hours. I only put him down because respirator. therapy was there to give him a breathing treatment.

Mon, Nov 11, 2002. A man we went to baby classes with entered Seth's room. He was going to take him to surgery. He was Seth's anesthesiologist. We saw him at Children's the day after Seth was born. They had Seth in the cath lab and he walked by and remembered us. We told him what was going on and he immediately went to the cath lab to get a report. I don't know if he requested to be in there for his surgery or if we just got lucky, but I was so glad he was there. I had to go back to my OBGYN (my mom took me while hubby stayed at the hospital in the waiting room) to have the stitches removed. He let me cry on his shoulder some more. When we were leaving, he told me to call him as soon as the surgery was over and tell him how Seth was. We go back to the hospital to wait. My parents and aunts and cousins are there with us. It was the longest day. Finally around 1:00, Dr. Knott-Craig comes in to the room. My husband wasn't there when he came the day before to tell us what the plan was, so he didn't know who he was. I immediately got up and said his name and my husband jumped up and reached for his hand. He said that everything went great and he figured he would be able to go home in a week. I had my doubts, but he was the doctor so I would just pray that he was right. At the moment, we had to work on getting him off the respirator. For some reason, it just wasn't happening. The day after his surgery, Seth formed a clot in his chest. Dr. Knott-Craig came to talk to us and calmly stated that he would be fine. He was going to remove it in his room, not the O.R. He said he would unzip him, remove it and zip him back up. And that is what he did. All was well, except we still couldn't wean him off the oxygen. Apparently, Dr. Knott-Craig had a patient, years before, that had problems coming off the oxygen; he remembered that one night when he was at home in bed. He called the hospital, gave the nurse and respiratory therapy his orders and Seth was off the next day. I could finally hold my baby without the tube down his throat!! We got to take Seth home one week after his surgery. I will never doubt Dr. Knott-Craig again!!

Seth will be 4 years old on Nov 3rd. He is a healthy, happy little boy. He doesn't have to be on oxygen or take any medicines (I'm knocking on wood). When we meet someone for the first time, they are amazed when they hear our story. Seth is the last person they would have ever dreamed to have gone through this. When Seth feels comfortable with the people he will ask me if he can show them his heart. I tell him yes and he raises his shirt and shows them his scar. We had our yearly check-up on June 15, 2006. Everything went well. He told his pediatric cardiologist he wanted to be a bull rider when he got bigger. She just laughed and told him he had to go to college first. Then she asked him if he was sure he didn't want to play foot ball for the Sooners! I think he said he would think about it!

Dr. Knott-Craig is leaving Oklahoma and all the parents of "his" babies are saddened. I can't speak for the other parents, but for our family, he is our HERO. We told him that if, God forbid, Seth ever needed another surgery, we would come to UAB and find him. We don't have anything against the doctor(s) that are going to be at OU Children's Hospital, but in our eyes, no one can ever replace Dr. Knott-Craig. And I believe the other parents feel the same. They also said something about flying to Alabama if their child ever needed another surgery.

I think this is a wonderful thing Saving Little Hearts is doing. It helps me so much to be able to talk about this. I still wonder sometimes if maybe I had done something different then he wouldn't have gone through this. The doctors told me it was a fluke thing, but I still always wonder. When I got back to school after maternity leave, one of my students asked me if Seth had not had the surgery, would he had....I didn't even let him finish the question. I told him that was NEVER an option to me. It just wasn't going to happen.

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