July - Sleep Deprivation and Big Decisions

We have been busy over here at Casa Pelota (House of Ball). In June, we bounced back to the hospital for a week, due to a nutrition error (that I've since moved past but really was too angry to blog about at the time). We have mostly been working on finding our way, and learning how to be normal.

Normal is so relative, isn't it? In the last three years, our family has undergone a lot of change, and learning to be, "normal" has become our default when emergency mode begins to wear off. We are there again now, learning our new normal. Not going to lie, finding a new normal is exhausting, and getting to that point usually involves lots of tears on my end, some yelling (also usually on my end, Eric is a pretty quiet guy when he's working through things) and lots of productive family conversations.

Right now, our biggest barrier is sleep deprivation. Never in my life have I gotten so little sleep. We are averaging a little less than 4 hours a night. You don't realize how important basic needs are until you don't have them. One aspect of Sloane that I may not have shared much is that with her medical needs, Sloane has to have an alert person near her 24/7. This means a person has to be awake at all times and watching her. This means I can't ride in the car with her alone, and we also have to have a caregiver awake at night that knows her emergency cares.  Because of this- Sloane qualifies for 24/7 nursing. Of course, we have to make things interesting, and Denver, at this time, is experiencing an extreme nursing shortage. When we asked what that even meant in our care conference at the hospital, we were told this means children often don't go home from the hospital for more than 18 months. NOPE NOPE NOPE.  Eric and I - at that point- made the decision to jump in over our head and graduate from "the floor" in the hospital without full-time nursing.



Sometimes I look back and think- we had no idea. Were we crazy? Then I look at our life, and even with the extreme fatigue, our family is together and I know this is right for us. 

Another aspect of our new normal: we are grappling with how to be normal in our day to day interactions. We are learning what we can and cannot do as a family. This has a huge learning curve and is really hard.  We are learning to go to noisy chain restaurants so that no one can hear our suction machine... we are learning that Eric and I need one another and can't just be two ships passing in the night... we are learning to slowly move back to the things we love that sustain us. Some of this is just the art of living with a newborn. I had forgotten with it being four years since having Aiden. And some of it is straight-up having a medically complex child. This particular week stung for us as we missed our much-looked-forward to annual Ball family reunion in Minnesota. Our team didn't think it was a good idea to travel so far with Sloane, and we couldn't line up nursing for me to be supported while Eric went with Aiden. The whole thing really sucked.

All of the day-to-day challenges aside, Eric and I are beginning to take on big decisions for Sloane's future. I am learning that I can't wait to be told what to do with Sloane: I am learning to be an aggressive advocate for my child. I have spent countless hours talking to mothers, researchers, medical personnel, and the experts themselves: those with Treacher Collins Syndrome- to determine what is a good course of action for Sloane's surgical future. We are getting to the hot zone: Sloane will need a jaw distraction in the next 2-3 months, and we are furiously weighing our options on what is going to be best for Sloane's future. We have spoken with an expert craniofacial surgeon in jaw distraction in Ohio and feel really good about him, his experience, and the technique he's interested in doing with Sloane; we also are giving our Children's Colorado team a chance to convince us they may be a better option on July 30th.

Really, Sloane is doing incredible. We have established some therapies, and she's excelling in our home. I am so incredibly proud of her. She is blossoming and showing us her resilience on a daily basis. Aiden is as well, and I couldn't be more proud of how much he loves his sister. I love his innocence and devotion to her. I love that he doesn't see anything wrong with her, he just wants to be with her and see her smile. He has crazy loud, strange songs he sings to her, he brings her all of his favorite toys, and he wants to include her in everything. I love my littles very much.