Today was not the greatest day, in fact, it was our worst day so far. As one of our favourite nurses described it to me, some heart babies have a honeymoon period and seem to be so healthy, but the honeymoon usually ends. Hope seemed to be doing well in the morning when Shawn arrived and he was told that they are looking to bump her surgery until Thursday now. After a few hours, Hope started to show some changes in her usual behaviour. Her heart rate was up in the low 200's and stayed there for quite a few hours. She was running a very high fever and her oxygen saturation levels were dropping constantly and taking longer to go back up.
They ran blood work, urine cultures, her gases and continued to watch her. They decided to start her on an antibiotic for the next 48 hours until her cultures come back. This basically guarantees our surgery being moved to Thursday as they won't operate until infection is completely ruled out. For the first 4 hours I sat next to Hope, I wasn't allowed to hold her or touch her too much as they were trying to get her body temperature down. This was a small dose of the reality ahead and it was torture, I was brought to the brink of tears repeatedly and had to fight to hold back the flood.
When Shawn and I returned to the hospital after dinner, Hope had been put on oxygen and will likely remain on it until her surgery. The need for oxygen shows that although Hope is doing very well for a baby with only half a heart, the heart is starting to struggle and needs surgery soon. One of the bad things about the oxygen is that it makes Hope lazy in her breathing. This is causing her oxygen saturations to still take dips, but they seem to recover more quickly. I think the most difficult part, is knowing that this is only the beginning of a long road with Hope that is going to get increasingly more difficult.
To top off our emotional day, this was our last day with Sadie. I wanted so badly to spend every moment with Hope, but knew that I wanted to spend time with Sadie before she was away from us as well. Before Shawn and I tucked Sadie in tonight, we took some time to pray with her and I cried through the entire prayer. Although it kills us to have her gone for 11 days, we know that it is not only the best thing for us, but also for her. Sadie is going to be in her glory with her cousins and her aunt and uncle. We know that she will be well loved and cared for. We are sure going to miss the way she makes us laugh and the smiles she brings. When I said amen tonight, Sadie looked at me and said, "Amen".
After spending some more time with Hope at the hospital this evening, Shawn and I prayed over her and left her in the capable hands of our favourite nurse. She has been known to spend a lot of time cuddling our little girl, this is such a blessing to us and it truly makes us sleep a bit better.
Tomorrow morning my mom is going to be at the hospital for rounds in the morning. Sadie is leaving after lunch and Shawn and I have decided to spend the morning with her before she goes. I imagine we'll have a tough time saying good-bye and yet, will try to keep a strong composure for Sadie's sake.