Miss Mira has the Patience of a Zen Yogi

Miss Mira has the patience of a Zen Yogi

Written Oct 30, 2011 9:50am by Amber Gannon Medina

Mira had a very restful day yesterday...She was pretty much knocked out the entire day and evening, with just a little eye opening in the evening. We figured she had had a busy morning with the addition of two more drainage tubes, and was taking a much needed rest.

The doctors explained why they thought this was all happening. When I asked why her heart was pumping too much blood to her lungs, they explained that all of these secondary issues-over pumping, arrhythmia, low blood pressure-are simply because her heart is trying to heal. That in essence she needs to heal and to "grow" out of them. So this really is a lesson in patience. 

I think one of my favorite parts of our day is what they call "mouth care". With being so sedated, Mira's mouth and lips get pretty dry and she can tend to look like she is foaming at the mouth (of course she gets teased by us for that-I think she is already used to our sense of humour). So we get to dip a Q-tip into the breast milk I am pumping and "rinse" out her mouth and rehydrate her lips. She loves it! She smacks her lips, and opens her eyes real wide and blows bubbles, and it just generally seems to make her day. Afterwards, she seems relaxed and sleepy and content and I love that little connection we get to share. I am finding that the little things can make a difference for me-the mouth care, holding her hand when she grabs for us, making sure she sees our faces when she opens her eyes. However, I am noticing my attitude is everything. When I can stay positive, those get me through, when I am feeling dark, it just doesn't seem like enough.

John and I are finding that one of the biggest challenges we are personally facing is simple exhaustion. We have been going home every night to recuperate and sleep in our own bed, but we find that once we get to the hospital and sit down and settle, we are SOOO tired. I don't know if its the stimulation of hospital life, the hard work it takes to get to the hospital and into her room, or the multiple updates on her condition-but we can't keep our eyes open. I do know the stress and uncertainty have to be major contributors. We have discussed spending a bit less time (right now we are averaging 7-8 hours there every day), but I wonder what else I would do, and then there is the fact that I really miss her when we are apart. Its a hard place to be. 

So as of right now, we are waiting. The big milestone we are working towards is the closing of her chest. And so we are hoping all these measures are getting her better so that she can have her medications lowered, which will help her edema, which will then allow her chest to finally be closed.