We arrived at CNMC at 7 a.m. and were very quickly taken back to do some paperwork and get Scarlette changed into a hospital gown. She woke up in a very good mood and was happy to get to play with mommy and daddy while we waited. The anesthesiologist came in and spoke with us, and then told us they would be coming back to take her to the O.R. at 8:30. 8:30 came very fast and it was so difficult to put my baby in the anesthesiologist's arms. I kissed her about a million times, told her how much I loved her, gave her back her binky and said a quick prayer. As they walked through the door to the O.R. I lost it in Mitch's arms. I had faith that the Lord would watch over her, but I admit I feared as to what exactly His plans for her were. I was terrified that it would be the last time I saw her sweet, smiley face and it was extremely hard for me to gain my composure. Mitch comforted me and after I had calmed myself as much as I could we walked back to the waiting room.
The first thing we did when we got back to the waiting room was read all the prayers that had been emailed to us, it was over 20 pages long! I cried through some, chuckled at some of the comments "she looks so smashing in her Gymbo" comes to mind, and overall felt a great amount of peace and love that SO many people were crying out to God for safety, mercy, compassion and wisdom for the surgeon and his team. We still are in awe of the outpouring of support you have all shown to us.
The concierge had given us a pager to send us text message updates when Scarlette had been put to sleep, when she had been put on bypass, and when the surgery was over. Waiting for that first update seemed like FOREVER! But at 9:30 we received the first text, and were assured that Scarlette was doing well. After that I felt SO much more at ease. We had made it over the first hump!
We got the next message at approximately 10:30, that Scarlette had been put on bypass and that she was doing very well. We were told that it could be anywhere from 1-3 hours before we heard from her again from this point so we were prepared for a long haul
! Not even an hour later we got the third message! Scarlette had been taken off bypass, was doing extremely well and the surgeon was on his way to speak with us about the surgery. Oh, my goodness, what RELIEF this message brought to me and Mitch. We were practically beaming!
Dr. Jonas came in and spoke with us about the surgery. He said there were no issues at all during the surgery, and that Scarlette is very strong. He did say that the ASD (hole in her atrial wall) was bigger than they had originally thought, but since he had just repaired it we should see a marked improvement in weight gain, energy level and a reduction in breathing rate. If I had ever doubted that she REALLY needed this surgery, it was put to rest when he told us this. Also, the cor triatriatum membrane that they thought she had was actually not that but just an extra piece of skin attached to her atrial wall and even though it wasn't affecting heart function they removed it just to be safe. He told us that we would get to see her up in the Cardiac ICU at approximately 2 p.m. I told him as long as she was okay they could take their time!!!! :0)
At exactly 2 p.m. we got to see our baby again. I admit I had to fight hard to keep my composure, because as happy as I was to see her, it's terribly hard to see your child in that state. I ran to her bedside and started stroking her hair (pretty much the only accessible point as you can see in the pictures) and telling her how well she did and how much mommy and daddy (and Jesus!) love her. The nurse explained all the tubes/wires/buttons/machines etc and I won't bore you with the details, but Mitch wanted everyone to know he counted 27 things attached to her!
At this point, it was all about pain management and weaning her off machine oxygen and onto breathing on her own. Each hour she was administered morphine, and as the hour waned we could see her getting more and more uncomfortable. Because of the breathing tube, she cannot make any noise (it goes right through your vocal chords) but she was grimacing in pain. I was quick to let the nurse know when her next dose of morphine was, because I didn't want her to be in any pain at all.
The next step would be removing the breathing tube (extubation) but only if she could support breathing on her own. We had a little scare at 6 p.m. (right as I was about to l
eave for the night and let Mitch take over) where she woke up pretty alert and freaked out because of the pain, restraints, etc and she dropped her saturation very low, but the nurses were quick to suction her and stabilize her and after that we decided it was best not to wean her off the morphine for the time being. I said good night to her and Mitch and headed home around 6:30, though after that event it was quite difficult. But today had taken quite a toll on me, and doing it 7 months pregnant was extremely hard because of all the fun hospital furniture I got to sit in (LOL). I will go back tomorrow morning at 8 a.m. and be there until 8 p.m. tomorrow evening so I have to get my rest while I can!
At about 8 p.m. tonight they extubated Scarlette and although she's still having some discomfort she's doing really well on regular nasal canula oxygen. She has been weaned down to 2L and if all goes well should be completely off oxygen by tomorrow night. They are still giving her morphine but they are weaning her off very slowly.
We thank you all SO MUCH for your prayers during one of the most difficult challenges we have ever faced, and ask that you continue to pray for swift healing for Scarlette. The next few days will be difficult, but it seems like a reasonable trade-off for a much better quality of life, not to mention years added on to her life by her heart not being taxed day in and day out like it was previously. I will update again tomorrow!