Wednesday, October 8, 2014

Trotwood Time

The last few days since we've been home from St. Louis, we've tried to make an effort to spend some quality time with Trotwood, especially since we decided not to take him with us again this weekend. As of last week, I'm cleared to drive again as long as I stay away from the Percocet, and I don't really feel like I need the pain meds as I haven't been in much pain and feel like I'm healing well. Yesterday, Trotwood and I made a visit to his old preschool where he got to visit with a few of his friends that did not move up to kindergarten this year. Some of the children also asked him questions about what you do in kindergarten. Mostly, Trotwood just nodded or shook his head to answer the questions but it was still funny to see what the other kids asked him. Then, he got to play with some of his friends at a few of the different centers.
Today, Mr. Rochester and I went bowling with Trotwood. Well, Mr. Rochester and Trotwood bowled while I watched. I still don't think I'm supposed to pick up anything heavier than 10 pounds and I didn't want to chance anything with a 6 or 8 pound ball. It was still fun to watch them though.
I'm glad that Trotwood has had this week off of school. It's been nice to spend more time with him since our lives have been so crazy lately. It's so hard to leave him when we go to St. Louis...but then it's also hard to leave Little Dorrit in St. Louis when we come home to Trotwood. Either way, you feel a little torn in two. 

Little Dorrit is still doing well on the conventional ventilator and the medical professionals working with her still continue to try to wean her down on her ventilator and nitric oxide support as she can tolerate it. Her three necrotic toes are being treated with Betadine with the goal to have her body naturally reabsorb what tissue it can while getting rid of the dead tissue. After that happens, a plastics team will come in and clean up her toes however they can. Although I've mostly come to terms that Little Dorrit will lose three of her toes, sometimes, I still feel sad about the impending loss of her tiny digits and how it might affect her throughout the rest of her life. How will it affect her when learning to walk? Will she be able to run or dance? Will she need to wear special shoes? Mr. Rochester continues to remind me that her toes do not define her. And honestly, even writing about this, with all Little Dorrit's other serious issues, it almost sounds trivial to be so concerned about her toes which really will have little bearing on her cognitive development. 

We still have no idea what effect her bleeding and clotting issues have had on her poor brain and I don't think we will know until she is completely off of the nitric oxide - then they should be able to move her enough to take her to do the necessary imaging. Thankfully, we have not had one of those middle-of-the-night NICU calls in awhile and I'm so glad about that. Most of our updates right now involve little changes that are being made to her care. Each time I call the NICU to check on her or receive a call from a 314 area code, I feel a little less nervous about the news I may be receiving. We continue to hope and pray for the best but realize she will need much time to heal and for her doctors to determine what care she will need in the future. 

1 comment:

Julie said...

This post feels a lot lighter, I hope your heart has been feeling lighter too! We've been praying for your strength to be able to get through all of this. I'm sorry about little one's toes. Good news about the oxygen and things remaining in what sounds like stable condition? Hope you continue to feel better and better from your surgery and that things will continue to look up for all of you. Best!