The kind of day when eating a slice of pie with your fingers just works.

The kind of day when eating a slice of pie with your fingers just works.

Written Nov 3, 2011 10:38pm by Amber Gannon Medina

As I am sitting here gearing up to eat a delicious meal delivered to us by a Miss Emily and adorable Willoughby, my mom asked me if I was as exhausted as she felt. It was a good question, but I couldn't figure out how to answer. The emotional and physical stress of Mira's situation has created such an unpredictable struggle between adrenaline and complete and utter exhaustion. Some parts of the day I feel like I could accomplish anything and everything, and then before I know it, BAM I can barely move my limbs.

I notice the days Mira's condition stays pretty steady and there are no real surprises, I feel fairly human. Today was one of these days. 

Yesterday we received a bit of somewhat difficult news about Mira. Her surgeon met with us and actually admitted to us that her condition has stumped him. At one point I admit that it had irrationally crossed my mind that the doctors were not doing everything they could-that they had been allowing Mira to flounder. Hearing that they WERE doing everything in their power made me feel better. 

Mira's doctor told us that she has been diagnosed with something called SIRS (Systemic Inflammation Response Syndrome), which can be fatal in babies who have had the Norwood Surgery. God, that was really terrifying to hear. Basically, suffering from SIRS seems to mean that Mira's body is finding it difficult gaining equilibrium after a serious surgery. They call her a "leaky baby" (they call her that very lovingly!), and explain this means a  lot of her fluids are leaking into her tissue and leaving her very very edemic. 

Even though this is very serious, and her condition is critical (the doctors words...) they all seem to think she is going to recover. They say her vitals are good and she is headed in the right direction. Still, finding out she is fighting such a serious case of inflammation and that its can be a cause of death in cases like hers....It is very very scary/

Today also had its challenges. Trying to live up to her leaky baby status, Mira is leaking from all of her chest bandages, including her heart bandage. The nurses had to change her bedding twice since she had completely soaked through it. She also had a little temperature after receiving an ultrasound that she didn't want to be a part of. 

So with all of these little issues, the plan of action is to go in and do another exploration surgery tomorrow. I guess if we are counting her explorations as surgeries, this will be her 4th surgery in 2 and half weeks. For this one they will not explore the heart, but they will redo her bandages and tubes (so they are no longer leaky) and may also wash her heart out with antibiotics. The risk of infection keeps increasing the longer she has tubes and an open chest, and its imperative they catch any infection immediately.

Even with all of her swelling and issues, Mira was in such good spirits today! She was so awake and aware-even pulling at her breathing tube and smacking her lips. Before we left tonight she got her mouth care and it looked like it was the best thing EVER in her book. It was so fun to hang out with my daughter when she is so engaged and present-It made me feel happy and light hearted! When she is on a roll, she is very very funny!

We will make sure to update you on her exploration tomorrow. Even though it is nerve wracking that she will be put under again, we don't anticipate any complications, and the surgery should be uneventful-at least that is what I am hoping!