A NICU Story (part 9)

 

From here on out our NICU stay would be less like a roller coaster and more like a train ride, a little bumpy but for the most part pleasant.  For the next 6 weeks Evie was in recovery. We weren’t able to pick her up from under her arms, she was still getting a couple doses of methadone to combat the addiction and we couldn’t bathe her for the a couple of weeks.

Well waiting patiently for the green light to get the heck of dodge Evie had a couple of first. At 7 months she got her first tooth and at 7 ½ months she got to play on the floor. This may not seem like a big deal but imagine being restricted to a bed for 225 days, for us it was very exciting.

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First time on the ground

During this time, we began to sprint Everly on the cannula a couple hours a day giving her a break from her CPAP mask. This was my favorite part of the day because I could kiss her face. Day by day the sprints would get longer and the oxygen would get lowered. In order for us to go home Everly had to be able to maintain her oxygen levels using no more than 1 liter of oxygen while on the cannula.

As our stay in the NICU began to wind down we started the frustrating process of getting medical equipment for home. Our insurance wanted us to go with a specific vendor but the vendor would not lend us their equipment unless we had a home nurse and I did not want a home nurse. This was something I would get asked about frequently by the doctors and nurses some would encourage me to get one but I knew that we could do it on our own. I guess that’s the perks of being in the NICU so long you become comfortable and confident with not only taking care of your child but also knowing the equipment.

Almost 4 weeks after the surgery on February 22nd I was visiting with Everly when I was pulled aside and asked if I had time for a meeting, I of course said “Yes.” In the meeting we talked about Evie’s recovery and how I was feeling about taking care of her since I’d be the one staying home with her. I told them the truth, I felt completely fine. I don’t know if it’s because we had 8 months to prepare but I wasn’t nervous at all I knew without a doubt that we could do it. It was decided than that Evie would go home on March 6th.

I walked out of the room with the biggest cheeser on my face. I immediately called Aaron and gave him the news I could hear him smiling through the phone. Let the countdown begin!

I think back to all we went through and the time we spent in the NICU. All in all we spent Halloween, Thanksgiving, Christmas, New year’s, Valentine’s day, summer, fall and winter there. Everly was put under anesthesia 5 times. She had 2 bronchoscopy’s, G-tube surgery, Pneumonia, Cardiac Catheter procedure and Open-Heart Surgery. Aaron and I also spent our first anniversary there. It was a lot to ask of a new marriage, but we made sure to put each other first even before Everly. We went in strong and came out stronger.

The day before we were getting out we got a huge surprise from friends, family and people we didn’t even know that donated diapers, wipes, clothes, money, formula, gift cards and even alcohol. We were given so much that to this day we still have diapers for Everly and we only just bought wipes for the first time, as for the alcohol let’s just say, mama drank that.

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All the donations

The night before we were getting out we stayed at a hotel it was both exciting and nerve racking. Of course, we were worried that something was going to go wrong and prevent her from leaving but I had a good feeling this time. We fell asleep like two kids waiting for Christmas morning.

And then it was time! We began packing our bags. As we were gathering our things there was a sense of urgency as if we need to get out as soon as possible before they find a reason to keep her. We put Everly in her car seat, started walking down the hallway, took off our gowns for the last time and walked out of the NICU. We did it! We got out! We put Everly in the car and the three of us drove home.

last
The last picture we took in the NICU
home
On our way home
we
The first thing we did when we got home!

A couple of weeks later a nurse that I had grown to love reached out to me. We chatted a bit when she revealed to me that when she first saw Everly her 20+ years’ experience led her to believe that she would not survive and she was right.

Everly doesn’t survive she thrives!

brother
The most recent picture of Evie, loving/torturing her brother
evie-feeding.jpg
Helping with her feed

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20170504_111845 (2)

standing

walker
Walking for the first time

Stay tuned for more blogging about what it’s been like since we’ve been home.

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