Caden Update 1/18: First Visit to Rochester


This was a big day for our family and for Caden. First of all, I have to say a huge THANK GOODNESS for Becca being here. She held down the fort and was a huge support during an extremely long day and the days to follow. It was an absolutely beautiful drive to the city. The sun was shining and it really put me in a good mood. I was scared when we left, but that just brought a peace over me. The day was LONG so I'll break up the day to make it easier to follow. The majority of information came at the last appointment of the day.

9:45 New Patient Intake Appointment This was our first appointment of the day. It was basically like a first pregnancy appointment since we were meeting a new team and they were getting to know us. They asked a bunch of questions and chatted with us about their practice. They have 7 Maternal Fetal Medicine doctors who rotate for delivery. Each of them did a 3 year fellowship to specialize in high risk pregnancies. We really enjoyed everyone we met. They were very welcoming and answered lots of questions. Basically, the information that we learned at this appointment is we are planning for a "normal delivery." They will monitor my progression as we get closer to the due date in hopes of keeping Caden in as long as possible. They want us to try to get him to at least 39 weeks, but want to prevent us from delivering in Buffalo. We will deliver in an operating room in case any emergency action is needed and we'll have a whole NICU team present. They will take Caden immediately to start his scans and get him hooked up in the NICU. Matt can go with him, but I will have to stay behind until I'm cleared. Then we can all hang out in the NICU. They will then review his scans and decide when his first surgery will be. Not much is set in stone until he is actually here and the surgeon and cardio team can review his echo out of utero. We will go back to see them in a month and then weekly after that.

10:45 Genetics This was a quick appointment where we just reviewed family medical history and ruled out any additional genetic anomalies. All of his genetic testing came back negative so there weren't any concerns about additional complications. His condition is an isolated heart issue, but if we ever have any more kids or if he ever has kids the pregnancies will be monitored extremely closely.

1:00 Ultrasound and Full anatomy scan This was about an hour and a half long ultrasound. Caden was quite cozy, and ironically, didn't want to cooperate for any heart pictures. He is growing well 2lbs 13oz and everything besides his heart is developing perfectly. It's always so fun to get to see him <3 He is breech (feet down) right now so they are going to be watching to make sure he flips. Please pray he does because if not we will have to get a C section and I'll be separated from him longer.

3:00 Fetal Echocardiogram and meeting with Cardio This was the bulk appointment. It started with a fetal echo (scan of his heart). He was MUCH more cooperative this time and showed off his heart like a champ! (and can I just say THAT BED WAS SO COMFY!! It was padded and heated... ahhhhh! I could have laid there all afternoon, especially after the long day we'd had.) After the scan, the cardiologist came in to look at a few things and then brought us into another room to chat. Caden's official diagnosis is Hypoplastic Left Heart Syndrome with Mitral Atresia and Aortic Atresia. His is a severe case, but we are believing for the best! She explained that they will also be watching for a narrowing or closing of his PFO which would result in another surgery before his 3-stage surgery. She said some HLHS babies will require this and it would happen almost immediately after delivery. She also had concern about his pulmonary veins and a condition called anomalous pulmonary venous return. Basically some of his veins would need to be rerouted which could lead to some serious complications and added stressors for him. Right now, she can't be sure because his heart could just be blocking her view so they won't be able to plan for this until his initial scan after birth. This is scary news! He has enough of a fight to go through right now so please pray with us that this is just a fluke and that his veins are doing exactly what they should! For now, the right side of his heart looks strong enough for the Norwood with a GT conduit and it will take place in his first week of life. Again, our big concerns are that first surgery and the recovery after. It is extremely hard on the body, but we know this little guy is a fighter!!

We are feeling much more informed and prepared going forward. We will head back to Rochester in about a month to see the perinatal team and to meet with the neonatologist and tour the NICU and the pediatric cardio ICU. We will also meet with the social workers to set up accommodations at the Ronald McDonald house and begin to make plans for our new life.

There is still a lot of unknown and a lot to learn, but each day is a step closer to meeting our little man! For those of you asking how we are doing, we are exhausted and overwhelmed, but thankful and hopeful. Thank you for checking in with us and for praying for our family <3 We feel completely surrounded with love and support!