It Gets Worse Before it Gets Better?

It gets worse before it gets better?

Written Apr 11, 2012 2:19pm by Amber Gannon Medina

I find it strange that my emotions or my "place" in this journey never feel right. When I feel like I am supposed to be handling everything well or when I expect to be a mess, I always seem to be feeling just the opposite. 

I never know if I sound like a broken record on this blog, so if I repeat myself please just skip forward until you find me say something new. Its been two weeks and a day since Mira went through her second staged surgery (The Glenn-I feel like that surgery should always be in CAPITAL letters....) and instead of feeling relieved and happy that she is doing progressively better and better, I feel spent, slightly broken and emotional. 

I don't know if its the shock of going through such a stressful week wearing off or if some sort of new reality is settling in, but it has been tough. The first few weeks of Mira's post operative recovery was mostly us trying to get her through some dicey issues-severely high vascular pressures which resulted in two surgeries instead of one, different breathing problems (collapsed lung, pocket of air in the lungs, etc), extubation, chest closing, chest tube drainage and most recently low oxygen sats. 

It has felt never ending, and honestly I think if I had to boil down my emotional state, it would have to do with recognizing our new reality. I have enough experience and heard enough stories of Hypoplastic kids to know that most likely our life will never be straight and narrow. It will never be worry free or a given. 

When you are stuck in a hospital for six months and you are waiting for that magic second operation that is supposed to make your daughter "all better", the implications of that surgery has major implications. In the weeks leading up to Mira's Glenn, this surgery meant a chance for freedom, an opportunity for Mira to be her version of "all" better, for some of her problems to go away. 

Yet, Mira's path doesn't seem to ever follow where my expectations lead. This fact is a blessing, it is frustrating and sad, it is sometimes funny, and mostly it is scary. 

In utero, Mira was only supposed to have a coarctation of the aortic arch (at one point, we were even told she might not have to have open heart surgery!). Once born, it was a possibility that Mira would be a candidate for a two ventricle heart. Once we knew Mira would receive the Norwood, she was supposed to be an excellent, strong candidate. Initially, her doctors felt she would be able to go home around Thanksgiving. 

Every step of this journey has been more difficult than anyone ever thought. 

It has been especially difficult seeing Mira's state after this 2nd surgery. I am sure it is too soon to really know, but Mira seems different. She seems to have matured and aged between the time she went in for the Glenn and the last few days. She seems wary and (am I projecting this one?) sad. Her eyes don't connect to mine the way they used to, and her happy waking hours are pretty far and few between. I realize she is still recovering from a numerous intense surgeries, and so I hope that she is taking her time to get back to maybe a different version of herself. 

I miss her though. I've been spending less time at the hospital and of course I feel horribly guilty. I can't describe the way I have felt being there lately-if I could boil it down into a single description, I would bring up the metaphor of a rat in a cage. There has to be some way out, some sort of different scenery to see, a way to get to that piece of cheese. Instead, I spend my days there feeling like I am ramming my head into the same four walls while I wait for Mira to wake up and then once she does I wait for her to seem to recognize me. 

On top of all of this, we are being bombarded by confusing messages about Mira's next steps. On one hand, I feel like doctors are telling me that there are still so many more hurdles we have to jump over before we can even begin to talk about discharge. After talking to her doctor yesterday and discovering they will have to address her low oxygen sats by possibly doing a cardiac cath, today when I received an update from her nurse we found out she is having issues with Chylous (when the small amounts of milk she has been given in her gut leak into her chest cavity...). 

On the other hand, people have begun talking about her going home. We've been warned that we might be sent home with Mira on oxygen. That we will have to learn her feeding tube and her meds and that we may be sent home having to give her her twice daily shots of lovenox (a blood thinner). She hates those shots. Those shots bruise her entire upper legs. For whichever reason, I absolutely loathe the idea of giving her those. I know, I know, you do what you have to do for your children, right? I would move the earth for Mira if that's what was needed, and in fact because of my limited scope and experience, that is what I feel like I am being asked to do here. I feel like I am asked to stretch myself to my outer limits, and then when I do that, I am asked to do it again.

I would love a break. I would love it, but I am afraid I wouldn't know what to do with it. Every break we have gotten, has been brief and followed by a shocking scary reality check.

I don't want anyone to think I am feeling sorry for myself or my family. We are blessed in more ways than we struggle. I couldn't bear to think of doing this without John (or Pow) or our friends and family. We are blessed with excellent care for Mira and the means to pay for it. We are close to the hospital and so are able to be at home throughout all of this. We have an amazing daughter, who is the strongest and bravest fighter I have ever met or seen (and I watch UFC with John-those guys got nothin on her!).

Its just that I am waiting. Waiting to finally not be surprised or scared by how difficult this is. Waiting to feel like-wait, we've got this! Waiting to not feel like a truck ran over me. 

Honestly, the denial I rely on can be more trouble than its worth, but it does get me through the toughest times. In fact, that very same denial had me imagining life after this surgery as our reprieve-and maybe its still coming. However, my new struggle is-how can I be OK if life doesn't have what I envision as a reprieve? How can I accept this new way of life, without feeling stressed with every hiccup and unexpected detour? 

Most of the time, I find myself feeling negative or scared or worn out and I find a way to rephrase the thought. As in-THIS WILL NEVER END (This one has crossed my mind a lot) rephrased to, ONE DAY AT A TIME! Yet, sometimes I try and try and each time I try it pops right back to-THIS WILL NEVER END! 

This experience has taught me what an imperfect human I am. There are some days I hate people whose lives look perfect. There are some days I hate having to go through this. Some days (like today) I try my hardest to go to the hospital and instead sit on the couch intermittently crying for most of the day. I guess instead of fighting it all the time, or trying to figure out why this tough phase is rearing its ugly head, I am just going to let it be. I am just going to let it be, and trust that GOD will help me find my way back to being the person I am at heart-loving, giving, and not spiteful.