Uneventful

Written May 16, 2012 4:00pm by Amber Gannon Medina

It has been a pretty uneventful few weeks with Mira. Thank God! 

She has been working on her feeds, and as far as I am concerned she is doing amazingly well! Its pretty difficult to impress doctors, but even they are happy with where she is in her recovery and progress. After a few weeks of her having some difficulties with throwing up her feeds, they switched them to continuous NG feeds, and she is doing much much better. In fact, where she was throwing up a few times every few hours (and feeling fairly miserable as a result) before, she is now "urping" a few times a day-at the most.

She is also doing really well with what we refer to as her "reserves". Before her Glenn Surgery, when Mira would get upset her renal numbers (Renals are a number that shows how "happy" her organs are. The thought is, if your body is going into fight or flight response, your least important organs will shut down first-like the kidneys!) her numbers would plummet into the 30's, and would take a long time to trend back upward. Now when Mira gets upset, her numbers drop into the 60's! And sometimes they don't even change at all.....Its a big improvement, and really one that shows that that her heart is doing much better.

Her pleural effusions are also getting much better...Each day's X-ray looks a little better than the previous day's image. These have been helped along by a new diuretic that Mira was prescribed, and I am really happy that she doesn't seem to be in imminent danger of having a chest tube again. Those things look awfully painful and it was no secret Mira was not a happy camper with them in!

It seems that once you get too comfortable, some shoe drops or falls, or whatever that saying is. This week, it was an unexplained fever that came on very unexpectantly. Unfortunately, Mira still has a Central PICC line and because of the fear of a blood infection (associated with an IV), they had to put her back on antibiotics. It seems that her fever broke the night before last and we are just hoping all her cultures for bacteria and infection come back negative. Mira has a history of getting fevers that are never explained (sometimes she gets them just from being upset) and that mysteriously go away on their own....

With all this awesome progress, I can't explain why I feel so depleted this week....I am happy that Mira seems really content, and we have had some wonderful days together! I think that sometimes when life settles down, two things happen in our new world.

First, I think hospital life hits you over the head. I am like a broken record, but "living" in a hospital just takes something out of you. The food is lousy, the air is canned, and the lights are unnatural-everything feels artificial and not of this world. There are days when I leave the hospital, and I feel like I've spent the day on another planet-entire weather systems have come through or something newsworthy may have been talked about all day, and I have been shut off from it all. It can make life feel topsy and turvy and I have trouble grounding myself in the here and now.

The second part of it has to do with being saturated with this whole experience. I've come to understand that once you reach a certain level of stress and trauma, it takes you a very long time to drop down to your pre-trauma point. John and I have both noticed that because of this, we've had very little patience for normal, every day things. If someone in a car cuts us off, we get very very angry. If something small produces anxiety for me, it can balloon into something that I obsess (just a little bit) over...and if something like Mira's fever crops up like it did this week, some of the old waves of feeling like our world is toppling over, come back to haunt us. Its like our minds know it isn't that bad, but our bodies and emotions don't listen. 

Its hard living like this.... and its this new found relationship with stress that catches up to me. Especially when there are quiet weeks...This little nerdy, nervous part of me says (while wringing her hands!)-Amber, don't get too comfortable-remember the last time you felt fancy foot and free? It lasted a day, and before you knew it you were walking into Mira's room and feeling a face slap from a new unpleasant surprise! 

I wonder when I will feel more myself? I think the old "myself" is probably dead and gone, but I wonder if this new lady can learn better ways of coping with this up and down roller coaster of a life?

I am sitting on my couch right now, staring out at a gorgeous day and the whole time my mind and heart are with Mira. It is also another Sophie's Choice....Do I stay here and get things done, take a nap, maybe a bath, cook some healthy food OR do I get my ass in gear, throw a granola bar in my bag for dinner, go to the hospital, get filled in on the medical updates, stand around Mira's crib for hours (don't get me wrong, she is a joy to hang out with and its always a blessing! But its also extremely exhausting!), and come home to a sink of dishes and a crazy dog who needs a walk and me, just a body with no energy.

Gosh, I sound like a whiner. I don't want to be. I am just starting to see that being a mom seems to always be choosing between yourself or your baby-is there any way to choose both? I have it in my head that having Mira home would help with that feeling of being pulled between two worlds, but maybe I would feel the same? It would just be in different areas.......

All I know is that I wish there was some magical way to fill my poor empty self up again....I wish there was some way to feel less of that sense of free fall/ungrounded/no time/emptiness wave. I am just so tired and worn out.

And yet, one of the most freeing feelings I've felt since having Mira is that it isn't about me anymore. It isn't about me, and Mira needs me. Someone needs me, and that gives me only a little wiggle room to fall apart for a few hours (maybe a day?), and then pick myself back up, put those pieces together and go play with her, go comfort her, stand around her crib for hours, make sure she is getting the care she needs, be active in the decisions they are making......

Can I take a nap first?