Last night as we were getting ready for bed I felt really uneasy about where Gracie was--so uneasy I was literally scared to death for her. Before I layed down I called the hospital and found all to be well--she was resting comfortably, the only change was that her high flow was increased from 4 liters to 5 liters. I felt comforted and went to sleep only to have Morgan join us in bed at 1am because of her teeth and her way of dealing with all that is going on. About 2 hours later, we couldn't handle Morgan being in bed with us so we took her back to her bed--needless to say that when my alarm went off at 4:30am to pump and call the hospital I ignored it and the next thing I knew we were getting a phone call from the hospital.
We were told that Gracie wasn't doing too well, her blood pressure and heart rate were extremely high and no one knew why. Apparently after the nurse did her morning assessments, she went to the next bed to assess the other little girl she was caring for and within a minute Grace's alarms were going off--her blood pressure sky rocketed along with her heart rate and the weird thing was that she was sound asleep. So they gave her some fluids and eventually she relaxed and the numbers came down. But a few minutes later, as the attending was sitting watching her, Grace's heart rate went from the 170s to the 210s within 15 seconds and she was still asleep. She started having irregular breathing and they decided to reintubate her to be safe. It took quite some time to calm her down and a lot of sedatives but she seems to be stable now.
The doctors are puzzled--they have no idea what caused the episodes or what to do. They did an echo, all looks fine. They did an ultrasound of her head--and that is normal. So the next step is probably to go back to the catherization lab and possibly stint open her conduit (what was placed in her heart in her first surgery). Hopefully by doing this they will be able to help whatever narrowing may be affecting the squeeze of her heart that is effecting her blood pressure.
We are so grateful for great doctors and nurses that know what they are doing and that are willing to keep us involved in Grace's care. The fellow on, told us that he wouldn't necessarily consider this episode a step backward--if anything it has given us additional information about Gracie. Something needs to be done because her heart can't handle working on its one when she is extubated without some help. Basically he feels that Grace plateaued in her progress and we just need to get over that hump. I kind of think of it like this: some heart babies have a really fast recovery, where everything goes according to plan. Others, however, their road is more curved and whindy, in that it may seem that they are just going in circles, but those circles are just part of that whindy road that eventually will bring them out of the woods. (Have I confused you all with my little analogy?)
Please continue to pray for our Gracie, she needs all the help she can get. She is so strong and I know she is a fighter and wants to survive--looking into her big, beautiful eyes I can see she isn't ready to give up yet. Thank you all for your love and support.