ICU isolation

95 Days Old

Sometimes over phone conversations I have these moments of clarity... by talking through things, I process parts of this journey that I had not been able to process. This is probably why therapy works so well. 

During Gracie's entire life, we have been go go go ... and so much so in survival mode. 

All. The. Time.

This whole experience is so heavy and so... weird. 

Nikko and I have been fighting for our little girl's life for 95 days straight, and every day there have been different challenges. 

When she was first born, we were on nec watch and had to get x-rays of her belly every 6 hours. We watched her ween from CPAP to nasal cannula, back to CPAP, to off all respiratory support, to back on high flow nasal cannula. We watched her have ENT, speech and OT all try to evaluate her swallowing (she failed every test) and get her successful at feeds. We watched her obstruct her own airway and code right in front of us. We watched her fail her sleeps study with "severe obstruction". We fought to throw out safe sleep practices and to implement reflux protocols and positional protocols to help her enlarged tongue block her airway less. We fought to initiate a transfer to CHOP and was initially denied by insurance. We fought to get her to a BWS specialist. We have returned to her room to a dozen medical professionals explaining that they had to bag her after another code. We have collaborated with neonatologists, pulmonologists,  radiologists, ENTs, opthamologists, speech, occupational and physical therapists. Most recently, geneticists, plastic surgeons and anesthesiologists. 

Nikko and I have been together for 92 days straight, 24 hours and day, and we have been fighting for her...and that is just so exhausting. 

Exhausting, isolating, and weird. 

We are in this weird space of covid, where we have to be super careful because our daughter has no immune system and chronic lung disease (as almost all preemies do from underdeveloped lungs). So we hardly ever leave the confines of either of the hospitals or our room at Ronald McDonald house. 

We haven't seen any family or friends in months and have created this weird codependency with each other. 

We go to the hospital together, we leave the hospital together. We eat together, sleep together, watch tv together, research together, talk to doctors together.

We have been traumatized together. 

And when you experience this level of trauma, for so long together, it becomes a weird space of being afraid to not be together. 

It feels like we have lived this entire life, isolated from those we love. 

We have become parents, parents of a critical ill child, whom not one single person has met in real life.

I am proud of us, how much we have overcome, survived and how close we have grown together. I also know at the end of this experience, Nikko and I will have a lot of healing to do ourselves. It will take a long time to recover from this trauma and how isolating the ICU really has been.