Six Month Mark

ritten Apr 6, 2012 5:41pm by Amber Gannon Medina

We are closing in on 6 months of hospital living and I still haven't figured out how to live a life outside of this place Mira calls home. I would like to give my spiel that any good mom would give-this place has become our second home, mostly because wherever Mira is, is where home is. Or maybe I would say that the nurses have become like family and so in turn the hospital is like a second home. Although some of these sentiments are true-our nurses are like family and Mira is my home-this place will always be the building (germ infested and sick smelling) that I feel comes between me and real life.

The first week Mira spent in her little CICU room I didn't know how I could handle being there day in and day out. I asked God to give me the strength to come back day after day-to a little space that felt like a prison. I condemned foolhardy and sentimental blog entries of parents who MISSED the hospital after they left! Of course now i see that condemning a parent of a NICU baby for anything they feel or say is ludicrous (we feel and say a lot of very extreme things). However, not a day goes by that I don't wish for home-our cushy couch, distractions, yummy essential oil smells, a place to receive visitors, a room for Mira to sleep in undisturbed, and most of all a place to let our guard down and to be ourselves.

Don't get me wrong-the nurses and doctors (Poor doctor Jeremy has gotten the brunt of our outbursts, nice guy that he is) have seen us at our worst. Crying, yelling, throwing things, mean gossip, passive aggressive backlashes, anxiety attack pacing-we have done it all at the hospital and in front and TO said nurses and doctors. For two introverted and very private people, this is a big deal and sharing emotions and fears in a public place can at times feel very unnatural and exposed.

Just recently I've also realized that if Mira had been healthy and at home we would have just started hitting our stride. I imagine we would have gotten some sort of a schedule down and we would have maybe started to feel like we could begin to reconnect to the people we are outside of being parents. The lady who loves gardening and yoga and the guy who is obsessed with MMA and likes to hang out with fellow railroad nerds. 

Mira's trajectory has left us with no chance to get used to ANYTHING! I imagine that a lot of parents feel that way about a new baby-just when you get used to one sleep pattern, another one comes along. But I also imagine if faced with that struggle, I would lament my few hours of missed sleep and be able to get used to feeling tired. After all, a crazy sleep schedule wouldn't kill Mira.....

Between the surgeries, struggles with reflux and vomiting, infections, inflammatory responses and extubations, I am having a hard time feeling like anything is a given and each surprise seems more like a threat. Every time I walk into the hospital, I will myself to not be surprised by what I find. 

It's going to sound so simple and maybe petty, but the hardest part to accept ga been our limitations-namely the tiny little space around Mira's crib where we perform ALL of our daily tasks. When Mira has melt downs, some times I day dream about all the room and distractions I would have at my disposal if I were at home. Mira is Upset!? Maybe Mira would fall asleep during a walk in the stroller? Maybe a ride in the car? Maybe just holding her and pacing the living room would soothe her? Maybe putting her in my ergo and doing some chores would knock her out?

When Mira is mad at the hospital, I have 4 things at my disposal. A bouncer, a swing, a tv that swings in OVER the crib and my body. I can rock her, I can bounce her and I can hold her-all of this no less than a foot from her bed (and her bouncer and swing go IN her crib!)

Ok, ok, I know how many weeks I was pining to hold Mira in my arms (and I am once again going through that), but the cords and oxygen and attachment to a crib are all so difficult. One word that describes how frustrating it is and one I never thought would frustrate as much as it does is the word limited. I feel so very limited. It's not something I am used to feeling and one I don't think I will ever be comfortable with.

As our time at the hospital comes closer (although I still anticipate being here another month to two months) I do realize the ways that we are lucky that we have spent half of Mira's first year here. First of all, the nurses have taught us ALL the best tricks! I've learned from the best of them how to expertly change a diaper, soothe a screaming baby, give a massage, bring down a fever, deal with cradle cap and teething, and so much more. I've been able to sleep through the night and have had the best babysitters you could ask for. I didn't have to struggle the feelings of isolation and loneliness new mothers talk about. I've also gotten pretty close to becoming the closest I will ever come to being an expert on my daughter and her condition. There is so much new lingo I've learned I should get my associates in a foreign language. I am particularly grateful for this as I am sure it will make me a better advocate for Mira as she gets to live her life with a heart condition in the "outside"world.

It's certainly not all negative. However, if I never had to find a parking spot here, wash my hands/use sanitizer every 5 minutes, eat the food at cafe west, be in Mira's hot stuffy room for hours on end or deal with those damn parent badges-I would be a lucky and a lot saner woman. 

The other day a nurse and I were talking about how I feel this experience has the potential to bring out either the very best or the very worst in people, and that we have a choice in which one it is. She very wisely said she thought it could bring out both, and I realized how right she was. I've been both the very best and the very darkest version of myself in this place. I've comforted people and yelled at old people who walked too slowly through the skywalk. I've learned a lot and then felt I knew better than the doctors (ok, I still stand by some of the "natural" remedies I use!). I've felt such love and warmth for some docs and nurses and admittedly great contempt and vitriol towards others.

So maybe this place is like basic training for life with a heart patient child? Who likes basic training? Who actually enjoys getting yelled at and running every day? Ok, don't answer that....maybe some of you do.

In the end, this hospital stay will be the most obnoxious and annoying, but also humbling and humanizing way to get a crash course in the new life we will embark on. It's been a place we have been surrounded by dozens of other families fighting the same sort of fight, and that insight will keep me from ever feeling too alone in this. With all of this in mind, I can honestly see this place in a different light. I don't think you could ever get me to say I enjoyed this experience, but I will say it's yet another blessing in disguise and I am starting to see just how rich life is with the kind of blessing that gives you more than just happiness.