Its Me Again

Its Me Again!

Written Jan 14, 2012 9:51am by Amber Gannon Medina

I am guilty! Its been so so long since I've updated our Caring Bridge Website....I thought about reading our last entry in order to jog my memory with where we left off, but I can't bring myself to be reminded of how bad off Mira was just a month ago.

There have been so many accomplishments, and I can't take credit for any of them. Mira has been working so very hard to get well, she is such an inspiration. How can a tiny person be so vigilant and tenacious? If I didn't see it for myself every day, I don't think I would believe someone so new and small would have such an inner reserve of strength.

The biggest and most exciting accomplishment has been Mira's extubation! Mira was extubated on December 29th and it was a rocky start. Within a few hours of being extubated, Mira's numbers were pretty low. Being reminded of her first attempt at being extubated, I wasn't sure she was going to make it this time either. It was a really rough 24-48 hours, but her doctor really felt that the majority of the issues stemmed from her agitation and not from physical limitations. She would get so anxious and/or upset, that she would start breathing fast and that would speed up her heart rate and raise her temperature. Her doctor felt that by keeping her fairly sedated for a day or two, she would be calm enough to breathe on her own. And it worked!! Mira is doing so well now! Her high pressure oxygen is on a setting so low that for all intents and purposes she could be on regular oxygen!

A huge chunk of what we need to focus on now is her nutrition. After several failed attempts at feeding her through her stomach (with an NG tube), she is having to receive all her feeds through her NJ tube. All her food now goes through a tube that is threaded down her nose and past her stomach into her intestines. One small victory for me has been a switch from her being fed formula to getting all breast-milk! It has been almost THREE months of me pumping every 2-4 hours (and feeling like it was a big waste of time, because she was not eating any of it) and a freezer FULL of milk.....I am hoping the immune boosting properties will help her poor little immune system (she has been on antibiotics for her entire life-not so good on the system!) and also help ease some of the tummy problems she has been struggling with.

As far as the non medical stuff....I wish I could find some literature on long term stress or burnout. I google stress and burnout and mostly I find books on work related stress. I WISH I had work related stress-boy would that feel like a walk in the park compared to this! This week I came down with the flu and was out of commission for two days. I didn't dare go to the hospital for fear of getting Mira sick too (although this morning I woke up in a panic about being at the hospital the day before I knew I was sick, and being with her last night without a mask! Its been over 48 hours since I was sick, but when I googled "contagious" it said I could be UP to a WEEK! I feel like an idiot....)

Being sick brought up a lot of different emotions....At first I laid there and felt miserable that I couldn't see Mira. After awhile I started to realize how much I had been slogging through my life like an automaton. Get up, go to hospital, go take Pow out for a walk, go to hospital, go home and eat and then sit on couch. I did this EVERY day, for 12 weeks......"It" has hit me like a ton of bricks. And I am not sure I know what "it" is yet. I know if I had to boil it down, it would be burnout. Plain and simple. But burnout with my new life will never be plain and simple again. It has to do with waking up almost every day feeling like its a new day and that I can DO this, only to be reminded by something (Mira being sick by some unexplained phenomena, our house and life being in utter chaos due to complete neglect, missing out on most every social outlet, etc) that I am full up to my neck with stress and that my coping skills are being stretched to the limit every day. It takes so much out of you and I feel like Good Amber and Bad Amber are in this continuous epic battle. 

Good Amber loves being with Mira and she is able to follow her very detailed schedule so that she not only gets to spend time at the hospital, but Pow is not neglected and the house is fairly livable and she works out and gets enough sleep and takes all her vitamins....Oh and now that Mira is eating breast-milk, Good Amber is also being very careful about what she eats. Good Amber also stays up to date on EVERY new piece of news having to do with Mira and asks the docs as many questions as she can.....

Oh, but Bad Amber is not something I like to admit to. She thinks things that I tuck away the instant they pop up. She is not someone I admit to very often. She likes to feel sorry for herself, wonder why this had to happen to HER.....She likes to imagine getting on a plane that is jetting off to some place faraway where she can pretend none of this happened to her. She sometimes wishes she could just down a bottle of wine every night so that she could take away the edge of stress and sadness. And the worst part of Bad Amber is she wonders why she decided to have kids in the first place. Yes, that's right, that is why I have to tuck those awful thoughts away. Because no one should feel that, its awful even to write let alone think.....Yet, I want people to know that when they think people are strong or that those same people are doing things they can't fathom doing themselves? Well, those people might be thinking things that are not very pretty. 

No matter what I go through I never forget the only things I know for sure (Now I sound like Oprah!). That I love that Mira with all of MY heart. That I will do anything for her. That she is an amazing person. And when I remind myself that, I try not to be too hard on myself for thinking those dark thoughts. But I am hard on myself anyway-There is no room for the Bad Amber. She pops up every now and then, and when she does I go for a drive or a walk and remember how amazing it is that afterwards I can go see Mira and spend time with her. I remember how many people are supporting and loving us. I remember that I am insanely blessed that she is even here, and that if she can do all she is doing to stay alive, then I can behere. I can be strong, I can be present and happy. I think admitting that you have weaknesses is part of where you gather strength from-after all, how would you know what lightness is without seeing darkness?