Emery’s Story

Site created on April 30, 2018

For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind.
-2 Timothy 1:7

Newest Update

Journal entry by Kelsey Casburn

That cattle prod is probably looking pretty good to y'all right now, isn't it?

I'm sorry. To say it's been a whirlwind is an understatement. In the past 3 weeks, Emery has moved from our 3-month home in pod 2 to pod 9 in the less acute area of the NICU, gone from 10 liters on the high-flow to .4 liters on the low-flow, celebrated her 100th day in the NICU, had her first bottle, spent her first morning in a swing, taken her first full feeding at the breast (I don't know how to say that more gracefully, I'm sorry if that's TMI), hit 6 1/2 pounds, and graduated to tub baths. She is the sweetest, most content little girl who self-soothes, snuggles, sleeps, and she is surrounded by doctors, nurses, and therapists who genuinely love her and are actively cheering her on. We are so thankful.

Beyond the whole "cattle prod Kelsey because it's been a month since the last update", I present to you today's theme from Don Hertzfeldt's "World of Tomorrow": "That is the thing about the present... You only appreciate it when it is the past."

I feel like that's pretty appropriate for this season of the NICU. We've reached the point now where Emery's oxygen is low enough that she could come home on it if she needed to (although please pray that that's not necessary). Her eyes are fantastic. Her brain scans are clean. Her PDA is closed.

But she has to eat. And that's a loooooong process. 

After being intubated for so long, she has what her therapist diplomatically calls a "hyperactive" gag reflux, along with acid reflux and a groove in the palette of her mouth that can affect her sucking. While she is doing so much better than we expected with nursing (sorry, sorry), giving her a bottle is a pretty good balancing act. We also need her to stay awake long enough to feed at least every three hours, which has us repeatedly violating my father and mother-in-law's golden rule: Never wake a sleeping baby.

If things go well, we're looking at another 4 weeks in the NICU, but it could be more like 6-8 just depending on Emery. As God has reminded us several times in the past 105 days, we're working on Emery time here, not our time. We're just trying to be thankful for these extra sweet days that we've been given with her, and appreciating them without trying to be impatient to get all of this behind us. (Although let's be honest: we are completely impatient to get all of this behind us.) 

I was washing up before coming into the NICU over the weekend, and struck up a conversation with a dad washing next to me. He told me how miserable it had been for the two days they had been there, and he was looking forward to going home on Tuesday. Then he asked me how long we'd been there. 

Oh, since April. NBD, amiright?

He immediately had that deer in the headlights moment of backpedaling "oh I'm so sorry, that's so terrible, I can't believe it." And it was funny in a sweet way; that he felt so bad about his own stay in comparison to ours. 

I was talking to one of the respiratory techs about it later, and trying to put a funny spin on it, because it was - I mean, we win NICU, right? I know there are kids that do spend way more time there than we have, and with much more severe issues, but we've got to be in the inner circle of long-term stays. I just tend to forget that most normal people do not have 100+ day hospital stays in their repertoire of party tricks, and seeing his reaction to it was a good reminder to me that we are so blessed to have a baby who is a medical miracle. She was 1 pound, 8 ounces when she was born, and now she's 6 pounds, 12 ounces. If it takes her 150 days to come home, then it's worth it because if we were looking at the odds then she shouldn't be coming home at all.

So we're enjoying the days we have with her now, so that we won't look back on them later and think, "Why were we so completely impatient to get all of this behind us?"

Or, at least, we're trying to enjoy them.

Trying to try to enjoy them?

Let's just go with all of the above.

Love,
Kelsey

(P.S. I can only post so many photos at a time, so I'll work on more this week so you can see her 100 Day party and first bottle / swing / mohawk.)
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