Wednesday, September 23, we woke at our normal time and proceeded to go about our routine in the morning with getting ourselves and Annabelle ready. We had our perinatal ultrasound appointment at 8:30 am. This was not an exciting time but rather I was anxious. We dropped off Annabelle at daycare and proceeded to the hospital for our appointment.
This was not my first time at the Perinatologist. I had weekly ultrasound appointments there with Annabelle later in pregnancy for her growth restriction and not being able to feel her kick. Even though I have been here before, I was still extremely on edge and my blood pressure reflected that. The nurses asked if my blood pressure was always that high and I responded with no I am just nervous. They took the rest of my vitals and I went back out to the waiting room to be called back.
We were called back by the sonographer, Nervously I walked back to the room. I couldn't even tell you what her name was because the day was such a blur. She proceeded to get all the vital information the doctor would need and we saw on the screen the baby was still measuring 2 weeks behind. She finished up with her scans and left to show the doctor the results.
We waited patiently for the doctor to come in. I couldn't contain my nerves. I sat there nervously watching the door waiting for her to walk through. My eyes were focused on that door and wanting to see her reaction as she came through. All the sudden the door opens and she walks in. Her face. I could tell by her face. This was something serious. She proceeded to tell us about the babies weight and that she was concerned with how small she was. Then, the news came. She found an issue with the babies heart. She told us it was either pulmonary atresia or pulmonary stenosis but she was leaning towards pulmonary atresia. To confirm her suspicions, she sent us to Cincinnati Children's cardiology for a more in-depth scan.
At Children's, my mom and dad met us there for support. We were both scared and did not know what to expect. The sonographer called us back to get started. It was an in-depth look at the heat called a fetal echocardiogram. When she finished up, the doctor reviewed the sans and came in with a bunch of information. I am glad my parents were there for the support when she told us the news.
Our baby had not only pulmonary atresia, but also a smaller right ventricle and tricuspid valve. This is known as hypo-plastic right heart syndrome (pictured below). This means the baby will be born with half a functioning heart, only the left side. A single ventricle heart instead of a double. My heart sank as I heard this news. I didn't know how to handle the news, neither did John.
The doctor further explained to us that our baby girl would have to undergo 3 open heart surgeries and the first one within the first week of her life. We were devastated to say the least. How can we do this, how could this have happened, why did this happen, what did I do wrong were all the questions I kept asking myself during this time. It is even more strange when there is no family history with a heart condition in either side of the families.
We both missed work on Thursday from the emotional roller coaster and news we just received. We tried to go in on Friday but both of us ended up going home early. We spent the weekend trying to wrap our mind around this news and sharing it with our families. Everyone was in shock when we told them. It is a very hard concept to wrap your mind around. I am still not completely there to say the least. It is something I struggle with everyday. Each day I take with a stride and get very emotional when discussing our situation with others. We don't know what kind of outcome she will have or how healthy she will be due to this congenital heart defect and IUGR. The cardiologist recommended a follow up fetal echocardiogram in 4 weeks to check on the progress.
Meanwhile, my OB and Perinatalogist recommended the best course of action was for me to transfer my care to a Maternal-Fetal medicine doctor (extremely high risk doctor) in Cincinnati so the baby will be easily transported to Cincinnati Children's immediately after delivery. I will not get to hold my baby girl when she is born nor get to see her until after my c-section is over. This is a hard pill to swallow. I will not be in the same hospital as my child and will be away from her not by her side for at least 2 days.
I will now receive weekly ultrasounds to keep an eye on our daughter to make sure she is still growing and the flow of blood in the umbilical cord is moving forward. If something looks off, then our situation will be re-evaluated. All this news in one day was just overwhelming and this was 1 month ago to the day we learned of our daughter's defect. Our lives have now changed. We will be having a daughter with a disability.
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