Delaney Update: 5/18

I am writing to you today in a much more rested state than yesterday. There were little to no issues that woke us up, aside from the usual tossing and turning. To our amazement we found ourselves asking each other, Did you suction her? No, did you? We may have actually gotten six hours of sleep! It's funny what you take for granted in life, and what has to happen for you to see it.

Yesterday was a busy morning. I had to leave right away for my own doctor's appointment, both a well check-up as well as a follow up for my ankle which has been aching for over a month, almost no healing. So, it's gotten to the point where I really need to figure out what's happening and get this fixed. I have to take care of myself so I can take care of others. My doctor is recommending physical therapy, and possibly an MRI on the ankle to ensure there isn't any significant tearing. I'm fine with getting it looked at and the physical therapy, but it's a matter of when. I will make it happen, but time is not so flexible these days.

When I returned from my doctor's appointment, our Nurse Sue had come and gone. One thing I didn't mention yesterday is that all of the spitting up we had experienced over the last few days was due to her feeding tube which had become dislodged slightly. Sue repositioned the tube and she has been feeding well without incident ever since. It was relieving because we want her to continue to gain weight easily without a lot of extra intervention.

Our Feldenkrais practitioner was also still here finishing up. I updated you a little bit about that, but we were both astonished to see how Delaney behaved later that evening. I really should have had it on video, and wish I had thought about it. She was highly active for at least three hours last night. So, imagine the video that I posted a few days ago over a much longer period of time and a lot more movement. Her head turned from side to side, and her eyes swept back and forth. She focused on the toys we have hanging from her crib which have high contrast black and white designs on them. We got such a kick out of that. Again, we so easily take for granted the little things. We get so excited about the littlest of behaviors, but when you have taken such a blow as we have...it's rather humbling.

Today we were visited by Dr. O'Shea, and it was so helpful for us to get some guidance on somewhat of a timeline and what direction we should take with her care. She gave us a lot of reassurance that we are doing all of the right things. She gave us some sense of really what should happen next, and then gave us a lot of confidence about what we should feel optimistic about. It's so helpful to have a medical professional be able to arm us with not only solid medical advice, but also great parenting advice on how to support each other. Dr. O'Shea gave Delaney her immunizations which make us feel so much more comfortable. She certainly doesn't need to complicate matters by getting an infection. We want to protect her as much as possible. She really likes that we are using PT/OT resources, and stressed that Delaney will need a lot of help to learn/re-learn what other babies are more naturally going to acquire. It was also helpful to get somewhat of an education on the kind of brain injury that Delaney has sustained. I was struggling to understand the difference between her brain injury and traumatic, which is a critical difference as we look toward other therapies. She has more to overcome potentially, but her brain is still developing. There is much we don't know, so we do everything in our power to stimulate new connections.

While we may have ruled out HBOT (for now) we have a lot we can still do to pursue brain healing and development, particularly because we are seeing so much spontaneous movement. There is just too much risk involved with an infant. Especially since she has a compromised heart. She has already sustained a hugely traumatic event and there is a risk for blood clot, embolism, and a critical increase in blood pressure to the lungs. It's not something that we are willing to risk at this stage. She is currently very delayed, to what degree she can "catch up" is yet to be determined. We want to do everything possible to help, but we aren't going to be cavalier about trying experimental treatments. The possibilities using safe methods are wide open!

We are so blessed to have the family and friends that we do. After the last post we received many messages offering support to give us respite. I actually have to sit down and organize who to call first and maybe start some sort of a rotation. I feel like a baseball manager...batter up! Who's on deck? Stay tuned, you will be contacted.

Looking forward to more nights like last night, in fact this will be the first night that we will be able to sleep in our own bed in many many weeks. Beaumont Home Medical came to give us a quieter O2 concentrator with much longer tubing that will allow us to move the operation upstairs. Again, one of those little things that can so easily be taken for granted. It should be a good rest of the day, and a wonderful night. Now if we can get this weather to break?!

God Bless,

B & L & d