|Posted by Sherri Viner on April 17, 2015 at 12:55 AM|
Today was finally the day we’ve been waiting for since our visit in which they told us that Nicholas has heterotaxy. Our appointment was the first of the day at 8:00 am so we didn’t have much time to think about what was ahead since we were rushing out the door. The mornings tone was set by a dreary rainy sky but the drive was fine except for the bit of traffic going into downtown.
We checked in and just a few minutes later we were being ushered towards the ultrasound room. We went into the exact room that we went into a month ago which made me feel a bit uneasy since this room didn’t give us the best of results. We had a very lengthy ultrasound, nearly 2 hours in fact. Luckily this time around my mom was in town. She was a much needed extra set of hands and was able to take Alexander into the waiting area when he got fussy.
Dr. Schneider, the pediatric cardiologist, accompanied the ultrasound tech midway through to look specifically at the heart. As I was lying there, there were a lot of heart terms flying around and I was trying to piece together what I’ve researched against what my untrained eyes could see. After they gathered all of the images and the doctor was finished taking down his notes, we went into another room to get an explanation of the scans. Dr. Schneider started by telling us that the baby has a very complex set of heart defects, which we already knew was coming. He went into explaining a few of the anatomical layouts but explained he was not very artist and wasn’t very good with diagrams. We would get those specific details when we meet with the surgeon in a couple of weeks along with the full write up of his diagnosis. We only got a few main things today along with a picture of things to come once the baby arrives.
The main notes from today were heterotaxy, stomach on the right, liver is more towards the left, most likely asplenia (no spleen), left atrioventricular valve atresia, right single ventricle, and pulmonary atresia. We will get the full laundry list when we meet with the surgeon. The very simplified version is that one side of the heart is not developed enough to function correctly and there is a connection missing that gets blood to the lungs. We will have to undergo a 3 surgery set; Norwood, Glenn, and the Fontan. The first will be done probably within the first week after birth where a shunt will be placed to direct proper flow. After a couple weeks of recovery in the hospital, we’ll be able to take Nicholas home for a few months to let him grow before we have to go back for the second surgery. The last of the series will be done somewhere between 2-4 years of age. It all depends on the child and the surgeon. Obviously this is a very simplified version of things to come and hopefully each of the steps goes as smoothly as it was explained...
Somehow I feel calm about everything. I’m not overly anxious, sad, angry, or scared. Before we were on a path but it was all shrouded in the darkness of unknowns. Now, we are on the same path but it has a little light shining on it showing us a little more of where we are headed. I’m just kind of relieved to be where we are, kind of like, we hit another checkpoint and we are just cruising along.
Our next appointments are with the neonatologist and cardiac surgeon in a couple of weeks and another ultrasound with Dr. Schneider in 5 weeks. So here we are again, the waiting continues until our next marker.
Categories: April 2015