october 13th, 2012

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 13th, 2012

It was during the weekends when I needed the most support, when I missed Parker the most, and when the feelings of hopelessness lingered longer. Three things happened on this Saturday that sparked a new determination in remaining hopeful.

I was exhausted from a long and frustrating night recapped in this Facebook post:
Well, apparently Matilda had her days and nights confused. She was up all night and mad! It is so frustrating, not that she was up, but that I cannot take care of her. Our night nurse kept leaving and I kept having to go find her to tell her Matilda needed her diaper changed, or to be swaddled, or to be held. I just want to be able to pick my baby up and give her what she needs. I also think she is hungry, but they say she is not ready for bottle feeds yet. Saturdays are slow in general so the doctors are just finishing rounds, then they will come talk to us.
I opened up to our day nurse Gina and she encouraged me to do two things. To find an inner peace for myself and something outward for Matilda to hold. She heard my frustration of needing to hold my baby and sympathized with the emptiness I felt. But she also shared her expertise in understanding what the patient needs, explaining to me that Matilda knows what I am feeling. She is alone in her isolette and she too wants to experience a bond, a closeness. She laid out the facts and expressed that although Matilda cannot be swaddled and pampered like a regular newborn, she would benefit from a stuffed animal to hold and snuggle with to give comfort. I had never considered that because of the SIDS guidelines, but Matilda was being monitored and her emotional well being needed to be cared for, too.

So I left the hospital in search of something snuggable. And while I was out I found my inner peace in the form of prayer. It was this day that I started praying the rosary regularly. Some days I would pray it once and others days I would pray it three or four times. It was powerful and it fought hard against hopelessness.

I started my day tired and worn, dreading the long weekend ahead. And now, as I sat holding Matilda with her new giraffe (which we rightfully named Gina) snuggled in her arms, I felt the warmth of happiness that had been dwindling.

The phone rang, our dinner was downstairs. I handed Matilda back promising to pick her up before bed, and I bounced down the hall only to be stopped in my tracks. The baby from across the hall's father was there. We had never been so close, eye contact was made, and then our walls instantly vanished. We both knew. He knew about Matilda and I knew about his girl. Our conversation did not last long enough. We both had so much to say. His girl was two months. She received a transplant, but they had not closed her yet. She had the same exact diagnosis as Matilda, they tried all the same treatments. Everything I said about Matilda was matched with a nod and the affirmation that Matilda was indeed on the same path as his baby girl. I wanted him to say something different. It made me angry. But it was exactly what I needed to hear. I needed the time to process and pray about the real possibility that Matilda's liver would not recover in time.

My relationship with this father grew over the next few months. He was always one step ahead and able to guide us through the process. He would invite me to see his daughter so that I could prepare myself. I saw her when her abdomen was still open, I saw her during the big sedative wean, and I saw how quickly she was moved to the floor once her wounds were healed. He would stop by to check on Matilda and give us inside information about insurance, pharmacy/medication, preparing to leave the hospital, and transitioning to home. I am not sure that I would have been as strong as I was without him leading the way. I am forever thankful for their kindness. I simply adore their family.

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