Longing for Boring Days

My friends Levi and Lindsay brought me a burrito from Cafe Rio. A few bites in, I had the realization that the burrito was in fact BIGGER than Dalley. It also weighed a lot more too.

Today I feel tired. I feel so exhausted from being stressed, scared and worried for the majority of my days. I long for boring days in the NICU when there's nothing to report besides resting and growing.

Monday morning I got a call from the NICU. It's not usually good when I get a call from the NICU before I've even had a chance to get up there for the day. The NNP (Neonatal Nurse Practitioner) that was looking after Dalley for the day was concerned about another infection that could potentially be presenting in her stomach or intestines. Her abdomen is abnormally distended and when they push on it, it was causing her some pain. These are some first signs of an infection called Necrotizing enterocolitis or NEC for short. I don't know much about NEC, other than it is common in really tiny preemies, that it is an infection in the wall of the intestines, and that I met a mom who had a baby die from the infection.

The words from the NNP saying that they were worried it could lead to that had me racing in my car all the way up to the NICU. Why does the world seem to be driving like they are on a leisure drive through the mountains on a Sunday afternoon, when I am trying to get to the hospital in a hurry?

I enter the NICU and I'm immediately greeting by the Neonatologist to tell me they are very concerned with her belly. They had completely stopped all feedings, put her back on the TPN fluid, and put another large tube down her throat and into her stomach. This tube was hooked up to a device that was sucking all air and fluid out of her stomach. The goal was to put her digestive system completely at rest.

I felt the tears starting to burn my eyes. How many times can I beg and plead for a miracle? How much more can Dalley take? I know she's tough, but none of us are invincible.

When I went to see her they were taking blood samples from her PIC line and from another site. They sent them off to be cultured to make sure the infection hadn't once again entered her blood stream. I looked in at her and saw her gagging on the giant tube that had been put down her throat. Sometimes I feel like such a coward when I have to walk away and bawl during these moments. I cannot watch her suffer. I wish I was stronger. I wish I could sit next to her bedside and tell her it's going to be okay.  But All I could make out to her was a whisper of, "I'm so sorry. This just isn't fair."

Fast forward to today......

They are starting to rule out an "infection" of her gut. But the size of her stomach is still concerning to them so they will continue to watch it vigilantly. The poor little girl just needs to poop. It's amazing to me how victorious a full diaper is to me.

Tonight I was also told that one of the blood cultures that was taken yesterday is growing positive for another infection. It came from the PIC line location again. I hate that the PIC line is necessary for medication delivery. It's a double edged sword. The site that is feeding the body the life saving drug... is getting infected. The other blood culture hasn't grown anything yet so they are "hoping" that it was a contaminated sample. If her blood were truly growing an infection then both cultures would be growing the same thing. Another sample was taken from the PIC location again today and if it tests positive then we will know we have yet another infection on our hands.

I just want her to have a break.

"Kicking these infections butts!" 

One of our primary nurses and one of our favorite nurses, Jane, is on watch tonight. She can seem to make miracles happen for our little Dalley girl. Fingers crossed that tonight is no different.

Good night from our worn out family to yours.