Day 75

Today’s post is not about Tess. It’s not about Memorial Day either, at least in a traditional sense. This morning I heard that a fellow NICU mom lost her son. The sense of loss I feel for her is devastating, and I’m honestly struggling to come to grips with what they’re going through. Their son got excellent care. He was 5 months old and still in the NICU, but got an infection and passed away in their arms. 5 months of NICU time with your child is intense, concentrated and focused. Not even coffee can cross the world-nicu barrier! We don’t spend time with our babies while grocery shopping, cooking, walking through parks, while doing anything else. When we’re with our kids, they’re our whole world – because we have to leave the world to see them. I worry that people will be insensitive to her grief, as her son never left the hospital; that people will think he must have been sickly the whole time and they saw it coming. The truth is much simpler: they lost their beloved son who they knew as intensely as any parent, and their lives will never be the same.

The NICU is baby Russian roulette. When Tess got extremely sick over Easter, this could’ve been her. A minor infection can actually kill. The horror of watching your child progress and then be taken from you in an instant is the ever-looming fear that NICU parents face every day, and it’s one of the reasons we look forward to departure with such intensity.

I don’t know what to do to show them how sorry I am. All I can do is keep this little boy in my heart, think of him as I watch Tess grow, and respect the life he lived with his parents. He will not be forgotten. If we lost Tess, that would be important to me – that people remembered her little life.

We’re on our way to see her now, as Dave’s response to my sadness was to immediately put our daughter in my arms. Smart man. Take a moment to be really, really grateful for our families, and to think fondly of those who are no longer with us. And if you can, send a little love into the world for people whose loss may be in the overwhelming stages. This is my memorial to O, and this is how I will remember him; this boy I never got to meet.

After a very rough morning that included Karyn also bursting into tears at the thought of my friend, we had a shockingly good morning at the hospital. The doctor said he’s writing in her chart that she should be going home this week. She’s taking 70% of her food by bottle, she’s still on room air, and her eyes are improving.

In response to this delightful news, Aly decided we should do all of the discharge stuff today, ahead of time. She put Tess on the list for her hearing test (we’re not worried), we’re learning infant CPR and passing that today, watching all the other pre-release videos, and Tess is going to do her carseat test! We’re not running out the door in the next few days, but that way it will all be taken care of so when we’re discharged we don’t have to worry about it. I’m wondering if Aly just thinks we need cheering up. it’s working!

4:30 PM
Tess passed the hearing test, we watched all our videos and gave her a bath, and she took 1.5/2 bottles. Not ideal, but what are ya going to do? She’s attempting the car seat test as we speak. So far her chances are 50-50 from what I can tell. We’ll find more out later. We’re also supposed to show off our CPR skills to the respiratory therapist that can sign off. It would be really nice to walk out of here with most of that done, even if the carseat test is a lose.

5:30 PM
Well, Tess was low on her oxygen for the carseat test. If worse comes to worst, they’ll send her home in a car bed. I’d rather not. Also, no one came to test us on infant CPR, so that will have to wait for later. A total win would have been great, but getting things checked off counts for something. We’re off for a quiet sushi dinner, slightly blue but hanging in there. Funny thought? Our entire life rides on the appetite of a preemie this week.

5 thoughts on “Day 75

  1. Yeah 🙁

    It’s a hazard when you hang around pediatric hospitals too much. I still keep Isabella close to my heart – a micro premie whose organs started failing when Ben was in NICU. It’s impossible not to internalize it. After 5 years of hanging around children’s hospitals too much I feel like every child I know is sick or dying. But in truth most kids are perfectly healthy. Ask the nurses if they have NICU reunions and if they have photos of their graduates. Pretty awesome.


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