Home.

We’ve been home for 3 days now.
It’s been okay.

Day one: Home around 2, did all the laundry and dishes, made 10,000 phone calls, got my Little S back, and then the in-home nurses came and brought Rae’s medical supplies:

Bags for her feeds

The pump, which can be charged up and ported around in her backpack if needed

Huge and tiny syringes

Extra tubes

More medical supplies, tapes and whatnot

IV pole

Also, not included by the medical staff, but by very, very wonderful friends:

Not the babies, check the counter, wine. 
Lots of wine.
And cupcakes and brownies and pie and ice cream and coffee.
These people GET ME.
These are momma’s medical supplies (once the babes are in bed, obviously).
The first night home was how I expected, long, and nerve wrecking. We have to set her pump to go off every couple of hours to make sure she doesn’t pull out the tube and waste all the feeding times. She ended up sleeping on my chest by 12:30.
Day two: Little S got ahold of Rae’s juice cup that had a double dose of Miralax in it (doctors orders for Rae)…so that was an interesting morning.
We tried to keep things as normal as possible, if not for Rae’s sake, then for Little S’s. Poor thing has been thrown off his routine, so we went to MOPS.
By 4 PM, the stomach bug had hit me.
Again.
Yes, I did just have it 2 weeks ago.
And no, I’m not pregnant.
I promise.
3 under 3?
 
Day 3: The rest of day 2 was fever induced nonsense ramblings, according to Big S. He claims I said something about being an icicle and Frozen and then fell asleep instead of taking my medicine. He took super good care of me on Saturday. I was in no shape to show him how to use the pump on Friday night, so she missed her NG feed, unfortunately, but we did do one on Saturday during naptime. It is almost IMPOSSIBLE to feed this girl when she’s awake. The slack on her pole is 8 inches, max. She crawls with vengeance almost, smacking and tackling into anything and everything in her path, with the most ferocious snarl you’ve ever seen on a almost one year old. It’s almost frightening. And definitely hilarious. So that means, for now, feeding with the tube hooked up to the pole is impossible. I may look for a small backpack suitable for my petite one, especially since we’ll be traveling soon.
But last night went great.

She slept all night until 6 AM, in her own bed. The beeping of her pump didn’t wake her, which is awesome!

Today we planned her birthday party.
Apparently that’s still happening, March 5th is still next week even though I’m stressed and getting over being sick and just slightly overwhelmed. That’s annoying. I really thought someone would change that for me. Whatever.

She’s doing great, for the record.

She’s taking her feeds well. She’s at 24 ounces of formula a day, about 8-10 by mouth and the rest via NG tube. The formula she’s on now is Elecare Junior, which is 30 calories per ounce, so it should plump her up. We go through the formula really, really quickly though. About every 3 days, she goes through a can. And she is so, so happy to have her graham crackers back. I’m pretty sure she’s eaten an entire box since Wednesday. The plan for now is that she’ll be seeing the in home nurses 2-3 days a week (it’s $110 a visit…out of pocket…so we may be opting out of that) and our pediatrician and the GI every week, we’ll continue with the neurologist, we’ve had a genetic chromosome workup done and should be hearing from them next week, and per the hospitals request, we will be pursuing early intervention therapy for her spasticity issues and her hand weakness, even if the MRI shows nothing.
As for me, I’m doing alright too.
I’m not going to lie, it is overwhelming. I’m up all night checking her pump and her tube. I’m always afraid when she rubs her face that she’ll pull the tube out. I’m trying to make sure she’s eating enough during the day to sustain her energy level, I feel like she’s not as hungry since she’s getting so much more at night than she’s used to. I’m terrified before I hook her up to the pump. I have to take a syringe and check for the tube placement before I hook her up. I have to listen to her belly and pump air through the port of the NG tube and make sure I hear a “whooshing” sound, which indicates the tube is in fact in her belly and not her lungs. I feel like I have to check this 30 times, even if I hear it the first time.
But, I’m holding fast to the truth that Jeremiah 29:11 claims, “For I know the plans I have for you, declares the Lord, plans to prosper you, and not to harm you, plans to give you a hope and a future.”
That goes for both me and Rae.
He’s got this.
I’ve said it a hundred times, and I’ll say it 100 more. Somewhere, somehow in all this mess, God’s got a plan that is way bigger than what seems like the biggest thing I’ve ever dealt with.
Wednesday Big S and I will celebrate our 3rd wedding anniversary.
We’ll also meet with the neurologist and hopefully have an answer, or at least a plan.
M

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