So we are finally home and getting back into the swing of things. The first night went very well. Everyone was very excited to have our baby back at home. Her brother couldn't stop giggling when we picked him up and he saw his sister in the car. I could tell Juliana was happy to be back at home when I put her to bed and she smiled and went right to sleep. She spent quite a few nights in the hospital fighting her way to sleep, so it was nice to see her comfortable again.
Juliana is stronger and definitely bigger than ever. She is talking (well baby talking) a lot now and her voice is so strong. She still is not sitting up or rolling but we keep up with our exercises. We are trying to get her interested in her feet but she is still mesmerized by her hands. It's so hard to believe that almost one year ago we started this journey. As she becomes more aware I begin to worry about how all of this is going to effect her in the future. I hope that we will be done with the long term hospitalizations soon. We have one more surgery to go which is causing some anxiety for me. I don't know if I can take another month or two in the hospital but the reality is that I have no choice. She needs to have this surgery or she will never get off TPN and be able to eat like a normal child.
Fortunately her lungs sound great. They actually are the best I have seen/ heard in her whole life. Too bad it took 12 days of rest on ECMO to do the trick, Now that we are home I am able to wean her oxygen and she is doing fabulous. We are taking it slow with only one wean per day and her oxygen sats remain in the high 90's. She is still grabbing on to her cannula and pulling it away from her nose whenever she can. When she does do this her sats drop into the high 80's which makes me very hopeful that she can come off the oxygen within the next month or so.
Now that Juliana is out of the hospital everyone wants to see her. We went to her pediatrician on Tuesday morning and will see audiology on Monday and then off to Boston on Thursday to see what our team thinks and what steps we are going to take next. I am thinking surgery probably in July or August, but her surgeon is unpredictable sometimes so we will have to just wait and see what he thinks.