The Day that Changed Everyting

September 23, the day our world turned upside down. This day I will never forget. The day the outcome of our pregnancy journey changed.

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.

                                                        21 week ultrasound picture

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.

The Big Day

Monday September 14, the day we got to catch a glimpse of our little one and found out if we were having a boy or girl. We woke up so excited for this day and could not contain our joy. We dropped Annabelle off at daycare and went to Bob Evan's for breakfast. At breakfast we discussed if and how we wanted to find out. To that point we had not made a decision. While eating, we decided that we did want to know the gender this time unlike Annabelle where we waited until she was born to be surprised. Now how to find out and were we going to share what we learned with anyone. John and I thought about this and decided to find out at the ultrasound and we would tell our families later on at a gender reveal party.

We finished eating breakfast and headed to the doctor's office. We waited patiently to be called back to see our little one. The time came and we eagerly went back to the ultrasound room. The technician asked if we were finding out the gender today and we said yes. She started off very quickly and we saw all of the heartbeat, feet, hands, arms, legs, spine, organs, brain, and got a good profile picture. Below is a picture of our little one.

Definitely a difference between bellies. Very small this time around.

The technician continued on with the ultrasound going through getting all the measurements/scans she needed for the doctor. In the process she got a quick glimpse as to what we were having before the baby moved and found out it's a girl!! We were so happy to hear we were having another girl because it did not matter to us what we were having as long as she was healthy. She quickly told us this without getting a It's a girl picture. I was bummed when we didn't receive one but she was moving too quickly for her to get a snapshot. As she was getting all the measurements the technician asked about my due date and when I had my first ultrasound. I told her that we actually had two ultrasounds, one at 7 weeks and another at 8 weeks. She said those would be the most accurate to give an appropriate due date and continued on. I noticed with all the measurements that the baby was measuring 2 weeks behind which is not good.  The technician finished up and escorted us back out to the waiting room. John left to go into work since we already saw the baby and he had a meeting to get to. I thought it was going to be a quick in and out with the doctor.

I was called back to meet with the doctor and my unsettling fears became true. She came in with a look on her face and had me wishing John was still here. She gave me the news that the baby was 2 weeks behind which is something that I noticed myself. Annabelle was also measuring small but she was not that far behind so I knew this was serious. She then walked over to me and placed her hand on my shoulder to prepare me for the news. The doctor then told me that she did not had the best look at the baby's heart. She said that there was some features of the heart that she could not tell if they were there or not and she did not know if this was causing the growth restriction in the baby or if it was unrelated. She didn't know if the size of the baby was causing us not to see what she needed to see. The doctor recommended me to see a Perinatologist (high risk OB) for another ultrasound within the next couple of weeks.

I left that appointment in total disarray. I was angry, sad and confused. The first thing I did was call John and told him the news. I don't know what was going through his head when he received the news but I couldn't stop crying. He kept telling me that all was going to be ok and we have to stay positive. My mom and sister Bobbie kept telling me to stay positive and that everything is going to be ok and the baby will be fine. I knew after what I went through in the first trimester that something was not right and my gut feeling was correct.