Theo came through the cath procedure fine, some bloody stools delayed our departure from the NICU. We came home on April 10th. (the 10th is special for Matt and I... we started dating on April 10th, we got married on June 10th and God let us bring our baby home on the April 10th!) We got home and had weekly checkups with the cardiologist at VCH. At our week 3 check up his o2 levels were low and something was going to have to be done. At 6lbs he was too small for the full repair, so we opted for the shunt. The shunt would make a new passage for blood to flow from the heart to the lungs. We had to arrive at VCH May 1st at 630am for his surgery. I had no idea what a bad day it was going to be. The hardest part for me was handing him over to the nurse knowing what he is about to go through. Such a helpless feeling. We sat in the waiting room for hours, they called with updates and all was good. He was moved to recovery in the critical care unit around noon. We were unable to see him right away, they had to get him settled in. Granny and Pa and my dad were there with us and we all went to the cafe and had lunch. It was about another two hours before Matt and I could go back. When we got back there he looked so pitiful, swollen and hard to recognize. Matt and I talked to the nurse and decided we'd let our parents back to see him. My dad and I came back in and that's when I realized something was wrong. Three doctors were around his bed and they were not looking at me or telling me what was going on. The nurse said his o2 was dropping and she couldn't figure out why. Finally, one of the dr's said they were ordering an ultrasound to see if the shunt was functioning properly. Within 5 mins the tech was there doing the ultrasound, he could not find the shunt, the dr's tried and couldn't see it either. So, our option was to go in through his groin (the same procedure he had a month ago) to see if the shunt had clotted. If it had clotted, Theo would immediately go back into surgery to repair the shunt through his same incision under his arm. It was about 3 hours later when they called us to the consult room, the shunt was clotted and they did not know why. So, back to square one. My poor baby had to go through that rough surgery not once, but twice. God saw him through it and he recovered well, we came home on May 8th.
He is doing well and his levels are good. We keep him on an apnea monitor, it is a wonderful peace of mind so we can sleep. I took him for a weight and o2 check today and he weighs 9lb 11oz and his o2 was 94-96. We meet with the surgeon on Monday for a follow up. And his full repair is aimed for September if his o2 level stays up. The full repair will consists of going through the middle of his chest and repairing the pulmonary valve, pulmonary arteries, fix the large hole between the chambers, and thin out the wall of the heart. We need him as big and strong as possible.
I want to thank everyone who came to see us, mowed our yard, cleaned my house, brought food, left comments, sent a card, text, email, or just thought and prayed for us. In times like these you find out how good people are and how amazing family and true friends are.
God has his plan and we will make it through!
Thank you!
Much Love,
Susan, Matt, & Theo
