And all it took was two weeks!

And all it took was two weeks!

Written Nov 5, 2011 7:43am by Amber Gannon Medina

We feel like Mira has finally turned a corner. Amen!

Yesterday when we came into her room, she looked like her old self! Small and sweet and so much less edemic. I could squish her limbs and actually feel her bones! Everything had been puffed up so much, when you squeezed her legs or arms all you could feel was edemic fluid. She also looked very content-extremely peaceful and angelic in her sleep. The doctors seem to be very pleased with her progress, and we feel relieved that they seem to be happy with these strides she is making.

This is all amazing news! If I were to be totally honest with myself, I would admit I am scared of not anticipating a setback-these three weeks have not been what we (or any of us, including doctors) expected! This lady has been an enigma, a mystery, a woman with a mission to do things her own way (who does that sound like?). It feels dangerous to believe this is just the start of her getting better, and hoping her improvements are by leaps and bounds:)

So I am NOT going to be honest with myself, I am going to be wildly optimistic. I am going to think we will have her home soon, and that she is going to grow and thrive better than any one ventricle patient these doctors have EVER seen in the whole history of their practice! I figure if she stumped people in how slow her post-op recovery was, she can surprise them in how well she does after turning her corner. Without being dramatic, I felt like she was making people wonder if she really wanted to make it through this. I am so glad that doesn't seem to be a question anymore-this toughie is here to stay and to thrive.

There are a number of reasons we all see that her condition is finally on the upswing! As I've mentioned before, her edema is a lot better. This was the major obstacle in getting her chest closed. The doctors think if she continues to improve like she has, her chest can be closed sometime this upcoming week-just writing that makes me feel happy and so relieved. Can you imagine? Most kids are able to get their chests closed 2-3 days after surgery. Its been two WEEKS since her surgery. Moving in that direction is such an important step.

Mira did have another exploration surgery yesterday. Whereas the other explorations were to try and fix a problem, this one was more of a maintenance. They simply wanted to wash her chest out and replace the dressings and bandages that had been leaking all over her bed (but again, getting rid of the fluids is good!! Keep it up little lady:). They also wanted to try and use her chest patch to start to close her chest (do I call it a hole?) just a little, and then see how she did. This was the exciting part-a step in the right direction.

We were told things went well and that she was knocked out for the night. John and I took the opportunity to vege out in front of the TV and eat cookies. Although, the eating cookies part isn't new, the relaxing and being home before 9pm was, and it felt really good. Of course, I fell asleep halfway through the movie we tried to watch.....

Another huge step in her progress is that they've been able to keep weaning her off her meds without her vitals taking a nosedive. Before her upswing, they would wean her off something, and her blood pressure would plummet and they would have to give her fluids to raise her blood pressure-which, of course, would make her swell more. It seemed like everyone felt it was a vicious cycle, and they've been excited that they haven't had to giver her so many fluids.

I really have to say that Mira wouldn't be doing as well as she is without her nurses. They've been such amazing advocates for her and supports for us. I never quite understood what people meant when they sang the praises of nurses. I had never really been in a situation to experience how wonderful they are. Well, here it is. Halfway through this, I had read an article talking about just how important good caregivers are for babies like Mira. They are the ones who will notice little changes in her condition. They sometimes know if something they tried before did or didn't work. Mira is so lucky to have nurses who care about her and are working to get her better. Not only are they wonderful caregivers for Mira, they are wonderful support for John and I. There are many blessings in this whole crazy business, and this is one of them.

Every day there are the tiny things that make getting through this thing doable. Being able to see Mira, having a vanilla cappuccino, writing Mira's care update, seeing the sun shine and the fall colors stand out on the trees, receiving the support from all of you, reading an article that had nothing to do with hearts, taking a hot shower, eating good food sent by loved ones, and last but not least feeling so grateful that we are all alive to experience this and to love someone so much our hearts hurts when hers does.