Well, Taylor has been home from the hospital for two weeks and we are now 4 weeks out from her surgery. All is well here at home, if a bit hectic! But it would be that way anyway for us. :)
Taylor was released with a feeding tube on July 11, which she promptly pulled out the first night and we did not fight her to put it back in. We have worked hard with her to increase her bottle feeds and she is doing really well. She is also taking solids in small amounts again with her new favs being avocado and hummus! She gained about 6 ounces between doctor's appointments in the last 10 days and is finally over 16 pounds!
Every day she continues to get better. Her personality, vocalizations and almost all of her motor skills are back. She is still struggling to roll over which she could do before surgery, but she is working at it. She is kind of like a turtle stranded on its back when she is in her crib except she gets stuck on her belly and screams till we come get her. She is sleeping well - usually all night or at least until 4 or 5 AM when she gets hungry and then goes back to sleep till around 7.
Jason and I went back to work for part of the week last week and the majority of the week this week. My brother, sister in law and their two kids are coming Thursday and we are looking forward to some time with them this coming weekend.
Overall her follow-up appointments went very well. Pediatrician thought she looked great and doesn't need to see her (unless she's sick) till her 9 month appointment in September. The pulminologist also thought she looked fantastic, especially since he saw her in the hospital on the vent and right when she came off. He is not particularly happy that her SATs hang out in the mid to upper 70s, but is willing to live with that if the cardiologist is happy. We don't have to see him again until late September unless something changes with her breathing. She will remain on her daily nebulizer to keep her airways open and will start an asthma inhaler in August just to protect her airways as much as possible going into the fall allergy and cold season.
We had our follow-up with the cardio on Friday and he was very pleased and actually didn't have much to say - which is a GREAT thing! Her echo looked good and the Glenn is functioning just as the team hoped it would. Her blood pressure is right where it needs to be and she has good profusion. All things that make the heart doctors happy! We talked about her SATs being in the 70s and whether or not that should be a concern and the answer was NO. Basically his opinion is that she was diagnosed late, has had two major surgeries close together which drastically changed her anatomy and her body is tolerating all of the these changes extremely well and she looks fantastic. He expects that she will only get better. That does not mean her SATs will necessarily go up but as her lungs heal and she grows there is hope they will. No cause for concern unless she seems "bluer" or SATs consistenly are lower. If that is the case then we might have to take her in for a Cath to see what is going on or plan for the Fontan a bit early. I think the real telling comment was that he doesn't need to see us for 3 months - the end of October!!! I was shocked and so relieved at the same time. Right now the next surgery is not until she is 2.
The only other tidbit is that her clot seems to still be resolving itself and her left leg is a bit bluer than the right. The blood vessels will eventually work around the clot and it should dissolve. For now Taylor will stay on aspirin every other day and we will schedule an ultrasound on her leg as a follow-up.
Thank you for the continued prayers, calls, cards, emails, meals, gift cards for dinners, offers to babysit and so much more. We have been so blessed!!! Taylor is a mighty little girl and we look forward to seeing you out and about with her very soon!
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