October 7 - Down Syndrome Awareness

Today I am feeling nostalgic and was going through some of my original posts. I am going to share a post from my first year participating in the 31 for 21 blog challenge in October 2011. Here was day 5 back then when I emotionally shared our experience with Connor's open heart surgery. He has come such a long way since then...

Day 5 - Open Heart Surgery

Connor's surgery was scheduled for April 1, 2010. April Fool's Day, really?  Jeff, Connor and I went down to Children's Hospital Boston on March 31 for Connor's sedated echocardiogram that was needed prior to surgery. He had several done since birth but this was his first sedated echo. We were there for most of the day for other tests as well and since Connor was born prior to 37 weeks, hospital policy required him to stay overnight after the sedation. Here is Connor the morning just before going in for surgery.

He was so peaceful. I am happy he did not understand what was going to happen next. Handing Connor over to the doctors at this point was the hardest thing I have ever done. The surgery took approximately 6 hours and we were given updates every few hours. Overall, sugery went smoothly and we will forever be greatful for Dr. Pedro del Nido. The surgical procedure included the repair of complete AV canal defect with Dacron ventriculoseptal defect patch and pericardial atrial septal defect patch. Primary closure of PFIO and closure of cleft MV and cleft TV. After completing this portion for the surgery, Connor was taken off bypass, but a small residiual ventricular septal defect was seen so bypass was reinstated to repair this defect. Basically I believe this all means that the doctor repaired 3 holes as well as the valve along the middle.

This is what we saw when we were finally able to enter into the cardiac PICU to see Connor. They had told us he would have lots of tubes and wires, but I really had no idea what to expect. They told us all of the medical things that we needed to know, but the main thing I remember the nurse telling me was that it was best for us to not talk near Connor and not to touch him as he was still aggitated and hearing our voices or feeling our presence may make that worse =(  All I wanted to do was sit there and sing to him and hold his hand and tell him everything would be ok, but for the first few days I wasn't even able to do that. The first two nights after surgery, Jeff and I both stayed at the hospital with Connor and after that we alternated nights since Makayla was still at home and it was realy difficult leaving her. She was fantastic through everything and had a great time with family while we were away.

Four days after surgery Connor was extubated, but then the following day a pigtail was placed for Chylous effusions. I never completely understood what this meant, but the pigtail was there to drain a milky fluid that had built up. Connor was no longer able to have regular formula and was given prescription Monogen and it had something to do with the triglycerides. He was on this prescription formula for the next 8 weeks. Connor did have a favorite nurse named Liz in the PICU who spent 4 daytime shifts in a row with him. She was fantastic with Connor and great at explaining everything to us. All of the nurses were awesome, but we will always remember her.

Here is Connor all tucked in and resting comfortably...

Big Sister Makayla comes for a visit...

Six days after surgery, Connor was transferred from the PICU to the inpatient cardiac floor. Things were certainly more relaxing in this room. He went from having a nurse all to himself to only seeing a nurse every few hours or so. Huge difference. The pigtail was removed and Connor went for another sedated echocardiongram. Everything looked great! Connor was discharged on April 9, 2010 and came home to heal.

It was certainly a long 10 days of our lives, but now Connor's heart is doing great and he only has to follow up with Cardiologist once a year!