Calvin’s Story

Site created on October 29, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

Calvin was born with Congenitally Corrected Transposition of the Great Arteries (L-TGA). L-TGA is a rare form of congenital heart disease where the lower chambers of the heart (ventricles) are switched, and his left ventricle is on the right and his right is on the left. We found out about his heart about halfway through the pregnancy where they were noticing something while doing ultrasounds to measure the progress of him. I ended up having to come to Abbott for an echocardiogram and learned about what specifically was going on with his heart and what it meant for the rest of the pregnancy and what delivery would look like. Calvin did not like the plan and surprised us almost 8 weeks early on June 28, 2020. We were in the NICU for six days and transferred to the Special Care Nursery at Children’s until July 21st when we were able to take Calvin home.

On October 26, 2020 Calvin had a follow-up appointment with his cardiologist. Unfortunately, they did not feel comfortable sending him home due to the right side of his heart appearing larger and rounder than they would like it to be with his condition. This is where the next chapter in Calvin's journey begins and we will continue to do our best to provide updates as often as we receive them and can!

Newest Update

Journal entry by Meghan Boe

Happy New Year!

It has been some time since our last post! Blake and I wanted to take time to focus on Calvin and enjoying our first holidays with him. There have not been a great deal of changes for Calvin since mid December when he had his surgeries. He was slowly taken off of pain medications from his surgery fully about a week ago. Initially they had taken him fully off of his heart medication, milrinone, and it wasn’t the right fit for him yet. He went back up to a middle range dose and seems to be much happier. He still has his NG tube for feedings. That has been a big part of his recovery is getting used to eating again. Some feedings are better than others, but the remaining goes into his tube after trying 20 minutes of bottle feeding. He has had issues with throwing up several times a day. We are hopeful with being back on milrinone that might get better since prior to surgery while on milrinone vomiting was not an issue. He has been very sleepy as well, almost like having a newborn baby some days!

Blake and I have done 48 hours each at the hospital where we focused on his cares in a solo capacity meaning doing all feedings and medications on top of the normal stuff we could do without nursing assistance. We were trained on how to do NG feedings as well as flushing his PICC line and managing the pump. 

He continues to gain weight and grow! He was 6 months old on December 28th and he is wearing 6-9 month clothing, size 3 diapers, and has lovely arm and leg rolls. I will have to ask what his most recent height and weight are... Since getting back on Milrinone we have seen more of his personality that was there prior to surgery. Lots of chatting and he is getting strength back to get back to rolling from back to front. Gets stuck with his arm (mainly the PICC line arm) but great progress. 

Calvin has been in the works of teething. With him being a preemie it is hard to know where he will fall in the baby milestones. His corrected age is 4 months (if he was full-term) and that is what most doctors go with for milestones. He is working on sitting up more by himself, reaching and grabbing toys next and above him, likes to help hold his bottle when feeding. Overall he loves to watch and help. When nurses do vitals he always grabs their hands and whatever instrument they are using he likes to grab. He enjoys books, teething toys, grabbing moms hair, holding dads hand, cuddling, watching movies and sports (hockey and basketball duh), and his play gym. 

More updates to come (and pictures too)!

            Blake, Meghan & Calvin 

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