Delaney Update: 4/30

It's very difficult to maintain one's focus and stay in the moment. Even more difficult when you aren't getting enough sleep or self-care. Thanks to family and friends for the reminder and encouragement to step away. Any new parent would feel anxiety about leaving a little one for the first time even without special needs. Hopefilly we will soon have much more of a rhythm in place and have a few more sets of hands available to take over for even a half an hour at a time. No one can be "on call" 24 hours a day with this kind of care and not get time away to recoup.

So, we do what we can in order to look to each day as a new day (Sounds almost oxymoronic). Today, at least for me, felt like that new day because my lovely, caring, nurturing wife took care of Delaney all night, solo, and allowed me to sleep. I still stirred in the night when I heard rustling and the occasional whirring of the vacuum we use to keep her airway clear. Nevertheless it was more sleep than I've gotten in many days time. I really needed it, and so thankful I was able to get it.

What I'm really glad for is that I was rested enough to be the good listener and caretaker I expect of myself especially when Lindsay needs me. She had some difficult moments today and I felt strong enough to be there for her. We always lean on each other and I don't want that to ever change - so we do what we need to to keep that strength in our relationship going.

We shared a lot together today about our fears. We explored some of the "what ifs" that race through our mind. We try hard not to dwell on them but it's important that we talk about it and express them. It's just not healthy to keep all of that bottled up inside. So, I thought I would share where that discussion led us.

I did some informal research this afternoon and in the process reeducated myself on brain biology, neurology, and some modern medicine. This was all triggered by my memory of when the doctors reported to us that Delaney's MRI showed "global trauma". We were obviously devastated, but it's difficult to understand what that means exactly. Global? Everything?

So I set out on google to get a better handle on what that might mean. I won't go into the parts of the brain here, but there are some clear connections to "what's missing" and what parts of Delaney's brain are affected. Each behavior that we worry about has a coresponding structure. We worry about her ability to suck, swallow, cough, sneeze, etc. and will those abilities return? If so, how? Can those parts of the brain be "rewired"? As it turns out, this is quite possible.

So in looking at possible ways to regain these lost behaviors, we came across a kind of physical therapy called Feldenkrais. We watched a video which illustrates how a young woman who, as a baby at 6 months of age, was given a similar diagnosis and overcame all of the obstacles, that similarly we are currently facing. Interestingly, at the time of the video she was attending college. Watch here: http://www.youtube.com/watch?v=CNVw4ZISLMs&feature=youtube_gdata_player . We are certainly going to be looking into this therapy for Delaney. Especially since we are already seeing her move a little more each day.

Today for about two hours she was waving her little arms around, eyes wide open. She is vocalizing more as well. One thing that we are grateful for is that her disposition seems to be intact. She still has the cutest little chortle. At one point I swear she was going to crack a smile! So we keep praying and holding, and loving this sweet baby.

As an aside, one of my "what if's" relates to the tragic CPR incident, in which Delaney was down for just over 20 minutes. I was reading today about "Cool Cap" for hypoxic-ischemic encephalopathy (HIE). If administered within 6 hours of an event such as this, has the possibility of staving off the lasting effects and preventing brain injury. Might this have been possible during this massive crisis? I made myself crazy thinking about it today. Then later brought myself back at peace knowing that there were just too many variables that night for anyone to have gotten every possible angle. I will say that I do think that NICUs across the country should be creating a protocol for the use of this device, and make it standard. I understand that some babies who require stimulation to restart their heart may only need seconds or a couple of minutes. However, those who go beyond 6-10 minutes should really be strongly considered for cooling therapy. I would like to see this happen so other children may be given the possibility of being saved from severe brain trauma. Make the option available to parents, educate them.

Tonight, I was really glad that my Dad was able to hold her for the first time. We feel horrible that it's taken him so long to experience his Grandaughter in that way. He was sick the first couple of weeks that she was born and then sadly things got so disrupted. It was comforted to see him cradle her in his arms - more of that warmth that I want her to experience. She deserves every wonderful thing in this world, and while I have any influence that's going to happen, early and often. It's good for the both of them!

I will leave you with this thought. You know that we get exasperated and angry at time. I shared a little of that in yesterday's post when I expressed how we "...ask God so fervently to make it right, fix our little girl...she doesn't deserve this!" Well, after a beautifully written note from one of Lindsay's friends, we got this message loud and clear...God isn't through with her (or us) yet. It's late, and I have more to say but will be adding that another day!

Goodnight, Moon!

Love, B & L & d