Monday, January 27, 2014

Returning to the hospital - the difference between the PICU and the NICU

About a year ago JAM was breathing fast, upwards of 100 breaths per minute. He didn't seem in distress, but this didn't seem normal either, so he was brought in to the PICU (pediatric intensive care unit) to be monitored.

We were fortunate that this was the only time for a year that he needed to be in the hospital for an emergent need.

I learned that the PICU is different from the NICU. I learned that in the PICU a baby needs their mom or dad near them always.  Here's a list of advice I wish I'd been given prior to being admitted:
Six months old, size of newborn
  1. Warn the PICU nurses that your six month old son is the size of a newborn. Otherwise the hospital gown will wade on him.
  2. Sanitize and scrub in. A lot. Because PICU parents aren't as careful as NICU parents when it comes to germs.
  3. Best pump milk in the hour before his feeding time and keep the fresh milk in the room with you. I made the mistake of giving it to the PICU nurses, they put it in the fridge or freezer, I called to tell them it was his care time -- and it was over an hour before I saw that much-needed milk again. I was in tears by that point because I HAD the milk, I had a hungry baby, and yet I could not feed him.
  4. PICU nurses don't know what you mean by "care time." They aren't paying attention to when your baby needs to eat next. That's your job. They'll chart what he takes in, but they won't think ahead that it might be time to grab some milk. Thus, "care time" means nothing to them, and rather than ask you what you mean when you page them, they might just ignore your page and go on with charting. [Okay, this probably isn't normal. I think I had particularly cranky overworked nurses the night I was there.] Since they don't equate "care time" with "He's awake, so come take baby's temperature and blood pressure now and bring some milk while you're at it," be specific. Say "My son needs his milk from your freezer now." Don't assume they'll come in to help weigh diapers and such. As the nurse so kindly said to me when she finally DID bring his milk much much later, "this isn't the NICU, we don't do things like they do down there."
  5. Don't plan to leave baby's side for the duration of the stay. You'll rest better if you can stay at baby's side. Bring yourself snacks, sandwiches, etc. Plan on having friends bring you food, or be sure to sneak away - and tell the nurse you're leaving - as soon as baby finally falls asleep for a nap. And then come back fast. My six month old in the PICU had a weak cry in a hospital room far too big for him. He would have cried for way too long - so long that he would have given up crying and gone to bed hungry - if I hadn't been there to page the nurse for him. 


Last weekend JAM went back into the PICU for the second time. I'm grateful we've avoided it for a year. I'd hoped he'd never go back. I hope THIS is the last time.

Staying strong in the PICU
This time I was prepared. I brought a phone charger, books, phone, jammies, toothbrush, Jonathan's formula and his own toys. We didn't bring enough books for a sick toddler, and in the rush out the door after his nap time I forgot JAM's glasses, but Steve fixed that the next day.  We brought our own snacks, and I planned a day or two in advance who would be able to bring me food when Steve wasn't able to make it to the PICU to relieve me for a meal time.

My nurses were fresh (because we didn't show up at 11 pm this time around) and involved me in every part of his care that they could.

Despite Jonathan being sick and sad, over and over again this weekend every nurse and doctor that saw him commented on how well he was doing for his gestational age at birth. "He looks amazing for a baby born at 25 weeks." "Um, he was born at 23 weeks." "Oh wow, he looks really good." 

I reminded them that they normally get the more medically fragile kids of any population -- they're working in a PICU -- but I still stored their compliments in my back pocket, saving them for a rainy day.

In the end we have to add another specialist - a neurosurgeon - to our list of people that follow Jonathan. Not a lot is known yet, and we aren't terribly concerned at this point, but it was a bitter sweet weekend. It reminded us of how amazing Jonathan's road has been, and was a cautionary tale of how fragile he is still.
And a day later, feeling much better at home.

I think this quote from Steve Saturday night sums it up:
When we said "for better, for worse" this isn't what I imagined... I didn't think they'd come at the same time. An amazing baby that I couldn't imagine being without, that also can throw my world upside down in just a day.

The other Steve quote from this weekend comes from Fiddler on the Roof. Steve used it to express how greatly relieved he was while simultaneously being exhausted by the ups and downs that are preemie parenting.  (I'm telling you, the roller-coaster starts after the NICU.)

(Tevye): I know, I know. We are Your chosen people. But, once in a while, can't you choose someone else?

We are so blessed, and so grateful for our son. Jonathan has navigated some very tricky waters. It'd be nice to go back to boring some day, wouldn't it?  I could go for that.

On a completely different note, I'm on facebook now. I made the page right before JAM took his trip to the ER, so not a lot is on there yet, but feel free to "like" me there.

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