Made of Gray

The New Normal

Raising the Rare Child, 201 Days in the NICUHolly D Gray12 Comments

Normal? This is the new normal we have been craving for months. Caleigh is home!

Our last family photo in the NICU

Load'er up!

Here's how our last day in the NICU started......On Wed. we got to the hospital around 9am and Eric and I preceded to pack all of Caleigh's many...many things. When your baby is in the hospital for 6 1/2 months things seem to accumulate quickly! We waited on doctors, waited on our home health nurse to bring Caleigh's IV pump, talked to our case manager many times, looked at schedules, waited on home health some more, and then started saying our goodbyes. When home health showed up it was 4 o'clock. We spent the next hour going over Caleigh's IV pump, hanging her new TPN and packing up some more of her stuff. We said some more goodbyes, cried a lot, smiled a lot and then made our way to the car. When we were finally pulling out of the hospital it was 5:50. Whew! We were already tired and then........

Caleigh's very first car ride!

She didn't know what to think.....so she went to sleep

We pulled into the garage, got Caleigh out of the car, had to hook up her feeding bags asap, she had meds that were due as well. After Eric unloaded everything we had to set up the pumps on the IV poles, we ordered pizza, home health made a huge delivery at 8:30pm, we gave Caleigh her first bath at home around 10pm and then we preceded to play the up an down of trying to get Caleigh to sleep. 1 hour here, 2 hours there; needless to say we are officially broken in as new parents. On top of her crazy NICU schedule Caleigh has to get meds around the clock. Babies without short gut tend to eat every three hours and sleep between feeds, but Caleigh's belly is always full and she has never had a normal schedule so our goal is to work towards one.

Of course, we stopped to take the front door picture!

Oh, and I failed to mention that I got horribly sick that night! Some kind of stomach virus! Eric was such a trooper and stayed up with Caleigh all night while I was up and down and back and forth to the bathroom. Did I say it was horrible yet?? Cause it was! The entire time Caleigh was in the NICU I was there every single day and I didn't get sick once, but the night that my NICU stress was relieved I guess my body decided to give in. I'm worried about Caleigh getting the bug but so far she seems to be doing well. My mom came over on Thursday and helped us out. Unfortunately the whole day is a blur. It could have been sleep deprivation or being sick, either way I don't recall much, but I'm happy to say that I feel all better now. Whew!

Caleigh is doing really well, Eric and I are so excited to have her home, but I can't stress enough that our home now looks like a hospital. Supplies everywhere, IV pumps, poles, bags and all her medicines........

Here is just a glimpse of Caleigh's med schedule.......

6am - Mylicon, Reglan, Ursodial, Zantac

8am - MUD (baterial overgrowth antibiotics, 3 meds)

9am - Prevacid

Noon - Mylicon, Reglan

2 pm - Ursodial, Zantac

6pm - Mylicon, Reglan

8pm - MUD

10pm - Ursodial, Zantac

That's 19 doses of medicine per 24 hr period.

During all of this we are turning Caleigh's feeds on for 4 hours and off for 1 hr. We are super busy trying to get used to the schedule.

But you know what? Despite all the 'hospital' that we had to bring home, we are extremely thrilled and still a little shocked that she is actually at home with us. This morning I sat in bed holding Caleigh until 10am, in my PJ's, drinking coffee and just soaking up the moments that I have dreamed of for so long.

PJ's, yep I'm not getting out of them until Monday when we have our first doctors appointment. I have been dressed and at the hospital for 6 1/2 months and for a few days, at least, I refuse to 'get dressed'......

I'm so excited that I get to hold Caleigh when I write on the blog dedicated her.

Of Course there is lots more to talk about.....until next time.....

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