Hey, little putzer

Hey Lil Putzer

Written Nov 10, 2011 9:29am by Amber Gannon Medina

There are some things about myself that are difficult to admit. The parts of yourself that are selfish, vain, shallow and petty have come into sharp focus as I go through this experience. It has been hard to face them, but I am trying to look at it as a way to acknowledge I am a human going through something that feels extraordinary.

For instance, no matter how nice everyone is at the hospital or how "homey" they try to make the room or the cafe-I hate it there. I don't like the smells, the lighting, the noises, the sickness. For awhile I felt guilty-was I saying that I didn't want to be with my daughter every time I dreaded going to the hospital? Some days I would rather just drive around in my car or go to the bookstore and read about Kim Kardashian than go to the hospital.I realized that I could separate the two things-I adore sitting with Mira and talking to her and seeing her look at me, and i can't imagine missing a day with her it is just that I hate that our visit has to be in a hospital setting. 

Another not so pleasant side effect of this has been my very visceral reaction to seeing parents with their healthy kids or watching pregnant women sauntering around. Do they know how lucky they are? Do they realize the privilege they experienced bringing their healthy kids home only to worry about what cute outfit to dress them up in? I envy the pregnant women who are day dreaming about holding and rocking their newborns and setting up their nursery. I was there once, and I have to admit it was a much cozier place to be. Now, I am completely aware that I have no idea what other peoples' trials and tribulations are-maybe the new mom with her baby is suffering from PPD? Maybe the pregnant mother to be doesn't have a wonderful husband or partner like I do. Everyone experiences suffering, its just that I wish we weren't. I wish Mira was happy and healthy and sometimes that desire is so strong I feel it in my gut, my heart and my head all at once. And it really really stings.

Yet, I go back to the reality that I love Mira. A lot. And Mira has Hypoplastic Left Heart. And I wouldn't trade HER for anything. So there we are-right back at the start and I've wasted a lot of time and energy thinking about what if's......

Mira is definitely a putz-er. I've always thought good mothers are supposed to accept their kids just how they are, and so I am learning to be OK with this. Yes, I wish she had had her chest closed two weeks ago, and yes I do worry about how she has a hard time with her arrhythmia and low blood pressure. However, she seems to be taking tiny tiny baby steps towards getting better, and I am celebrating every last one of them!

Examples: 

Her edema is so much better! Her once stay puff marshmellow arms and legs and face are wrinkly and have a shape to them. The physical therapist said the time it takes for her skin to snap back after pressing on it has gone down from 30 seconds to 20. 

Her chest tube output is no longer bloody. After discovering (via another chest exploration) that her heart had fused to her sternum and that every time Mira coughed or hiccuped it was causing tiny (I want to say tears, but am not sure if that is correct) abrasions that were bleeding. After detaching the two, Mira's output has been less and it has not been bloody. Another baby step!

Her numbers indicate that her heart is no longer pumping too much blood to her lungs. This had been a problem all along-they were worried that her shunt was too big and that it was causing too much of her blood to be pumped to her lungs. After an exploration and a lot of echos her surgical team concluded that this was not the case, but that she might have to grow into shunt...Her numbers are showing that she is doing much better! 

When I look at all this evidence, I hope that it means she is getting better, that she will be home by Christmas to get all the love and presents she could hope for. I started out with these huge expecations and it is amazing to me how they have changed. Each day I try to take the little things that indicate she is improving. But each day, I go back to the very stark (yet freeing) truth that Mira's future is not promised. So I spend each day with her remembering that.

I also remember no ones' future is promised and with that in mind I want to thank everyone that is supporting us, everyone we love and who loves us back. I encourage everyone to tell people in their lives that they appreciate them, to give their kids as many hugs as they can, to thank their parents for everything they've done, to do something special for their partners. To not waste any time or take anything for granted. Mira has given me the gift of seeing and feeling all this firsthand and I am hoping she is giving that gift to everyone whose life she touches.