As some of you know, Jake and I have had a twist in our story lately. One we never would have seen coming...
Jake was accepted to Optometry school at Southern College of Optometry in Tennessee. We were excited but nervous to be moving across the country! He was scheduled to start school the first week of September of this year. That's also the same week our first baby will arrive! Needless to say, it was going to be a crazy time.
At the beginning of May, I went in for my Level 1 ultrasound (my doctor routinely schedules these for every patient). We were excited because they are a little better quality than the normal ultrasounds you have, and we couldn't wait to see our cute little boy. He was perfect! We could see so much detail and it made it feel SO much more real and exciting.
After the ultrasound was over, our doctor mentioned that the ultrasound tech had noticed something different with his heart. He wasn't exactly sure what it was, but something didn't look exactly right.
About a week later, we had an appointment at Davis Hospital to have a more advance ultrasound, and to meet with a Maternal Fetal Medicine doctor. There they did another ultrasound, and noticed that our baby boy had a VSD (hole in the heart) and also that they may be a sign of Aortic Stenosis (narrowing of the aorta, because of a valve problem). We were completely shocked. You never want to hear that something is wrong with your baby, it was a lot to take in.
A couple weeks went by and we found ourselves at Primary Children's for a Fetal Echocardiogram, which is essentially a specialized ultrasound of just the baby's heart. After a 45 minute ultrasound, we were ready for some answers. We met with Dr. Menon (Pediatric Cardiologist) and after another 15 minutes he knew exactly what it was. The next hour (which felt like an eternity) to Jake and I felt like we were having an out-of-body experience, watching ourselves sit there. We were told that our perfect little baby boy has a congenital heart defect, called Tetrology of Fallot (TOF) with an absent pulmonary valve. This means that in his first year of life, he will need open heart surgery, and because of the valve that never formed, he will also need 4-5 valve replacement surgeries in his lifetime. The biggest concern with the missing valve, is if the baby will be able to breath on his own when he's born, or if he'll need to be on oxygen. They told us to expect the baby to be in the hospital for at least the first 3-4 weeks after he is born.
At the time I think we were both in shock, we just didn't even know what to think. I just remember sitting there just feeling numb. It was really hard, you just want your baby to be perfect. But even though we were feeling so heartbroken and sad, Jake and I were both also feeling calm and peaceful.
Once they finished explaining the details of the defect, they let us ask questions for as long as we wanted. Of course one of our first questions was that we are supposed to move to TN. To which Dr. Menon boldly stated that he wouldn't recommend it. He talked a lot about having family support when going through having a baby that is going to need special care. He also talked about the importance of availability, and being close to a Children's Hospital that has seen this condition before (within the last 3 years, they have seen 6-8 cases at Primary's of exactly what our baby has). It's definitely not common, but it is good to know that at least it's something they have seen before, and can fix.
As more of the details unfolded, we found out that the chances of survival are higher than we thought. What a blessing it is to be born in a time when medical technology is so advanced.
So, after thinking everything through, and talking to our families, we decided to postpone Optometry school for at least the next year. The doctors had mentioned that the first year is the most crucial, and the most stressful. SCO was so kind when we let them know we were going to have to stay for another year.
In the weeks since our initial visit, we have felt more confident and feel VERY blessed that things have worked out the way they have. It's easier now to look back and see the timing of everything as Heavenly Father guiding us in our lives. I can't imagine what it would have been like to find out our baby has this condition once we had moved to TN, and Jake had already started his first year of Optometry school. Most people aren't as fortunate as us, to be able to prepare for something like this ahead of time.
Over the last few weeks we have learned A LOT about TOF with absent pulmonary valve. We are just so glad that it is something that can be fixed, and that our little boy will be able to live a normal healthy life! We have met some families who have children with the exact same condition that are doing wonderful.
Even though we don't know what is going to happen in the coming months, the calming peace that we felt has stayed with us. We feel so blessed to have such wonderful families, friends, and support.
Now that we know more about his condition, we don't feel quite as anxious as we did when we first found out.
On the upside of things, our darling baby boy (who looks just like his dad) is growing strong and right on track, moving lots, and even though he has a little problem with his heart - we think he is still just as perfect!!
