I kind of wish this post was a how-to guide on getting more sleep with a newborn or, even more so, a manual on resting as the parent of a disabled child. It is, in actuality, neither of these things, but I am still excited to share some of the possibilities for catching Aimee a 'Zzz' or two.
We are currently in hot pursuit of safer, more consistent, fuller nights of sleep for Aimee. Between her more frequent sobbing sessions, her reflux, her lack of visual abilities (causing her to confuse night and day), her seizures, and her apnea/shallow breathing, Aimee gets much less than an ideal night sleep and does her best to make up for it during the day. We won't ever be able to resolve all the reasons, but we are hopeful that a few of her nighttime battles can be subdued.
On Friday we met with the Childen's Hospital Durable Medical Equipment specialist in regards to ordering a bed. She recommended some nicer looking versions of hospital beds with nice hefty looking price tags. We told her about the comfy lift bed that we had already looked into and she agreed it would actually resolve more issues for about a tenth the cost. You may remember me sharing a photo of this bed before. It will allow us to keep Aimee quite elevated without having to strap her down (as they actually do when she is at the hospital). It can be used on top of her current bed or even directly on the floor for when she needs to stay in our room during sickness. We are hoping that it will provide a great solution towards longer periods of better sleep for Aimee. The therapist estimated that it would be sufficient for the next 7 years, at which point we may be in need of a lift machine in order to move her.
Another element we are considering adding is a video system for night monitoring. We feel really limited in our knowledge of how Aimee is doing from across the house with the simple baby monitor we have had since she was born. It is nearly impossible to hear the quality of her breathing, to tell if she is just coughing or actually choking, to hear if her mask is leaking, and there is no way to see if she is seizing or even just awake. I find myself making several trips to just check in on her. A video feed won't resolve all these issues, but it may help with a few.
Also, in two weeks, Aimee is having another sleep study done to reassess her apnea severity and potentially adjust the pressure of her bipap machine. We are hopeful that her recent surgery will mean positive results in this area at least. The nights that she sleeps well and keeps her mask on overnight, we are nearly guaranteed a happy, energetic Aimee the following day. How lovely it would be to see this happen more frequently!
All in all, we have great hope that these simple changes may mean longer awake day periods full of energy and joy for Aimee. Here is to a night full of 'Zzz's!
