Skinny

- Draft

Written Nov 12, 2011 4:23pm by Amber Gannon Medina

Mira is getting down right skinny! 

Last night John and my schedules worked out so that we could both spend time with Mira at the same time. It felt cozy and we actually had fun with Mira...She had her eyes open almost the whole time we were visiting, so much that she started to notice the stuffed animals I have been dancing across her crib. Her little legs were kicking, her eyes were watching us, her lips kept pursing and smacking and she practiced sticking her tongue out at us (I am sure this will be perfected by the time she is old enough to be seriously defiant!). And being the Mira that she is, she of course had to try and pull her ventilator out of her nose.....

She looked so well and so much like a healthy baby that I wanted to pick her up and take her home. Sometimes the desire, the urge to pick her up is so strong and so primal that its hard to shake. Its so difficult to let that rational part of my brain interrupt the motion to scoop her up and cuddle her. Of course, I logically know this would be disastrous, but my mom heart thinks she would be much happier and get better if she was cradled in my arms.

Mira is looking so good-low chest tube output, peeing well, lowered on a lot of her meds, excellent breathing on her own, and as I mentioned, SKINNY (not as edemic)-that the doctors are talking chest closure either tomorrow or Monday. I love how since this whole thing started, the doctors seem to enjoy surprising us with when and what they are doing with Mira. However, I just want them to attempt this chest closure when she is ready and well enough...We have been warned the chest closure is dicey-sometimes the kids just can't handle it and they have to reopen it. Mira's chest is open now and so her heart does not have as much pressure pressing on it and her lungs have more room to expand. Once they close it, her heart and lungs will have less room to beat and expand and many times that is too hard on their bodies. Needless to say, I am excited about this one of multiple hurdles she is going to jump, but also very very nervous.

I wonder if Mira's one month birthday is contributing to this new meloncholy and overwhelmed mood I am entering. Its so hard to know what I am feeling or how to go forward because I've never been through anything so extreme in my life. Nothing even close. And its been a month of daily visits to the hospital, of intense worry and sorrow. A month of watching my daughter endure dozens of procedures that hurt and cause her to suffer. 

I imagined getting more used to this situation by now. I was prepared to already be in the swing of seeing her in the hospital every day and I thought I would be more comfortable missing her when I was at home. Yet, for some strange reason it is getting worse! I feel angrier. I am sometimes consumed with petty feelings and some days I feel like crying. A lot. As in all day long. 

I know this isn't a post about me. This is supposed to be about Mira.