october 5th, 2012 (part 3)

Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

October 5th, 2012 - part 3

I was so excited to see Matilda round the corner with the resident smiling, papers in hand. The MRI was long, but it went well. I was half listening to the summary and half watching Matilda's stats drop. Tyler and I stepped back, but remained in the room. With hands shaking I posted this on Facebook:
Just brought her back. She is having trouble breathing. Please pray.
This was the moment we met Rhea. She was not Matilda's nurse that night, but she took charge immediately and lead the team of doctors and nurses alike. Despite being on a ventilator, Matilda was refusing to breath. It was one of those moments where time stood still and the only word that remained in my brain was "please". Nothing more, just "please".

I remember Tyler reaching for my arm and suggesting that we step out of the room. He was terrified with tears in his eyes. At any moment it could all be over and I wanted to be there. I was being asked to endure watching my newborn wither away, so that is what I intended to do. I wanted to take it all in, even the worst of it.

I don't remember how long they fought to keep Matilda alive. I remember looking at the anesthesiologist. I wanted her to step in and do something, we made eye contact and she gave me the saddest look. I was angry. I wanted her to focus on Matilda; I guess that is why they usually ask parents to leave. Not for the parents, but for themselves.

Rhea is strong, bold, and enthusiastic. I still hear her voice echoing, "Doctor! Doctor! Don't you want to call for x-ray?". I think Matilda took the resident by surprise. We were so focused on finishing the double exchange transfusion, that the thought of Matilda throwing a curve ball was off the radar. The PICU at Mount Sinai really works as a team. I cannot say enough that the nurses were just as important in saving Matilda as the doctors and surgeons. And that is the way it needs to be. Doctors need to focus on researching, thinking and problem solving. Nurses need to be present, aware, and ready to get their hands dirty... and they do loads of thinking and problem solving too.

Then it was quiet, calm. Before we knew it was over, it was over and everyone walked away breathing a sigh of relief. I posted this on Facebook:
That was scary. She is stable now. They have not stopped and are jumping right into the transfusion. Thanks for the prayers, I could not think of any words, I was terrified.
I can easily say that from that moment forward, whether Rhea was our nurse or not, if she was on the floor, we felt comfortable and confident Matilda would be well taken care of. The nights were always scary, for numerous reasons, but nurses like Rhea made them feel okay. The following is from her point of view:
Matilda Smith, the little one in Bed 7. The moment I actually met Matilda was definitely a memorable one. Of course I knew about her and was helping to prepare for her return from the MRI and upcoming night in a calm, easy manner. But instead here came lil mighty Tilda in a "pay attention to me!" fashion. So there we found ourselves, nurses, anesthesia doctors and residents in the teamwork situation that we all thrive for, working to get her settled back into Bed 7. She must have really been bored all day because at this moment she was all about causing a little scene. In particular, I remember the look on Kelly and Tyler's faces as we did our "PICU dance" around their child. They were calm and nervous, but mostly wholeheartedly trusting of us with their little girl. It was as if they were like "we know you guys got this". That pretty much sums up the Smiths for the next few months and the duration of their stay. It's a true blessing to get to know a child's family as well as we did with them. Fast forward a few months and we get to see pictures and hear stories all about "lil mighty" and how she thrives with her older brother and parents. To me the stories that come after patients have left us gives us such hope and courage to continuing doing what we are doing. Thanks to the Smiths for being a part of our great memories.
We were calm and collected. We held it together in front of the doctors, nurses and staff. But I was not okay - that night I had a panic attack. After the storm, there was a moment of quiet. I stood looking at Matilda. She was a mess. She was lifeless. Her body was stiff and frozen. In that moment I felt the world come crashing down on my chest and I could not breath. It hit me as hard as anything. My baby just almost died.

Then just as fast as Matilda went from not breathing to breathing, a doctor walked in to debrief the situation. I could not let my emotions take over. I needed to listen. I needed to focus on understanding the situation.  I needed to be a parent. Matilda always came first. I calmly sat in the chair while the room filled back up in preparation for the continued transfusion and wrote this on Facebook:
I want nothing more than to take away all her wires and tubes. I hate seeing my newborn in this way, so limp, so bruised, so skinny. My heart aches and my sadness is deep. I want to snatch her off that table and hold her tight in my arms. I want her to be better, I want my little girl back.

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