Day 7- BT Shunt Surgery Day

We were able to post earlier today on Bryan's phone, but we thought we should add more to fill you in on how it went. This morning was a roller coaster for us- we were told yesterday that her surgery would likely be today. At 4am this morning, the nurse called us and said they were preparing like she'd have surgery around 2:00. So we went to the hospital thinking she was going to go. The problem was, believe it or not, bed space.We were able to meet with our surgeon, sign consent forms and from 9-12, we were told she was going, then not, then yes. It was so nerve racking and frustrating. The Cardiac ICU was a complete zoo today...lots of kids, full rooms, and some children in an acute condition that required them to have surgery before Maddie and/or be on an ECMO machine. So, at 1:00, the anaesthesiologists came in, talked to us and she was ready to go. We were able to walk with her bed into the surgical wing, kiss her and we both walked away very shaken. It was the most difficult part of this journey yet. They started her surgery at 2:45 pm and she was out by 5:15 pm. It helped having my parents, Nancy and Aunt Maria here to pass the time. It was a beautiful day (a little cool) so we tried spending some of the afternoon outside. The flowers are all in bloom and everything is just so green here.

Her surgery went very well except the first shunt that was put in formed a clot inside and they had to remove that one and put a whole new one in. So, they actually performed that technique twice. The shunt that was put in was a 3.5mm gortex tube between her right subclavian artery (off her aorta) and pulmonary artery(to lungs). It's basically bypassing the right side of her heart, since her right ventricle cannot function. She has a single ventricle that works- her left. This is a temporary "fix" for Maddie though. She will out grow this shunt, then in 4-6 months, she'll have another surgery called the Bi-Directional Glenn. Her last surgery, which will finish the replumbing of her heart will be between 4-6 years of age and it's called the Fontan. These 3 surgeries are labeled the Fontan Procedure, which was developed in the 1940's. They are all open heart procedures. So, we've just started this journey with her. We feel like we've crossed one huge hurdle, getting through this surgery today. We got to go back and see her after she arrived in her new room, there are more wires, tubes, lines than I'd ever imagined. She is on the ventilator (which all babies are with this surgery) and hopefully will be able to go off of it in the next couple of days. That's our hope. She is also on a Morphine drip and she was completely out of it, takes a while for them to come to after major surgery. I thought I was prepared for this part, very difficult to see your own baby like that. But again...I have to remove myself, my feelings from this and look at it in a medical view- Maddie won't survive without having this done. For the most part, Bryan and I were very calm today. We had the support of my folks and his mom, as well as everyone back home. My faith is stronger than it has ever been and I'm sure that God was carrying us all through today. I felt His presence and was lifted up by Him. We also are incredibly grateful for all of the prayers from our family and friends. We know they were sustaining us in our time of uncertainty. Maddie is truly a little fighter yet a sweet angel from above. She is doing well and we were advised that we'd probably rest better if we don't stay in her room tonight (one of us can stay with her now, there is a little bed for a parent) but we decided not to. We're so exhausted and know she will never be watched over closer in her life than she will tonight.