We’re in the home-stretch here as I fully intend for this to be our final post about our time in Arkansas…which means it could be a little longer than previous posts, since it covers several weeks of time.
No hating allowed! 😉
Let’s pickup where we left off – Christmas Eve. It was a super rough day because we saw Charlotte regress after having such a rapid turnaround. My parents (who’ve never spent even one Christmas away from Omaha) drove down to be with us in Arkansas. It meant a whole lot to us.
Within an hour of Charlotte arriving at Children’s, they successfully got a PICC line in her leg. WHEWWWWW! They also took some blood gasses and they were starting to look good again, so they began to wean the oxygen down. It was now a waiting game as she received a four-day course of steroids to shrink any swelling in her airways before she’d be ready to come off the ventilator again.
There was always the possibility that it wasn’t actually swelling and there was an obstruction in her airway (like a growth or something) but we’d wait to see if she failed extubation again before getting an ENT evaluation to check for anything abnormal anatomically.
We sang Christmas songs at Charlotte’s bedside that evening. It was so peaceful and we could finally relax because she was doing well again.
Christmas morning was bittersweet because Charlotte wasn’t with us but the family we were staying with really made it special for us. They had a few gifts for our family, which JoJo especially enjoyed since opening presents is a favorite activity of hers.
Jonathan and I had left all our Christmas presents for Josie in Omaha so a quick run to Target and a few Melissa and Doug toys later, we had plenty for her to open. I’d forgotten to buy Jonathan anything until a couple days before Christmas and after assessing his Amazon Wishlist, only one of the items would actually be able to make it to the house before Christmas. It was a nose-hair trimmer so that’s all I gave him. LOL
That afternoon we went back to the hospital and opened some gifts at Charlotte’s bedside. My heart broke as we left when I saw another baby’s bedside surrounded by dozens of loved ones. The hospital has a strict policy of two visitors at a time unless it’s critical enough to invite family back to say goodbyes. We had to walk past them as they wept on one another’s shoulders. My heart shattered for them. The NICU is a place where you realize as a parent how precious and fragile life is and that none of us are in control. All we can do is trust God with the lives of our kids and do our best to protect them in ways we can.
The day after Christmas they ended up losing Charlotte’s arterial line. This was allowing them to take blood from her artery so they could measure her blood gasses but they could poke her heel to test, just wasn’t as easy or fun for her. This meant that I could FINALLY HOLD HER!!! It was just perfect. Jonathan also got to hold her the next morning.
On December 28th, after all the steroids were given, it was time to try taking her off the ventilator again. It’s funny since I absolutely wanted this to happen but I was also super scared it would end up like last time. In the NICU it’s easy to get used to where your kid is at and if they’re stable you don’t want to mess with it. Even good steps can be scary because it always poses a risk of stable becoming unstable. I was at her bedside when they took her tube out and she did amazingly. I even heard her CRY!!!!!! That’s when I was certain the steroids worked and it was swelling and not an obstruction preventing her from breathing. She hadn’t cried the last time because she couldn’t get the sound out so this was quite the improvement.
BUT THEN JoJo, Jon, and I all got struck with the flu!!!!!! Nooooooooooo!!!! This meant that we couldn’t get into the NICU (because hello, sick babies). Thank the Lord that my mom was in town (she stayed while my dad went back to Nebraska for work). She moved into the hospital for the next several days while we took every conventional and homeopathic remedy available to get the flu gone fast.
Of course the day Jonathan finally got better, he had to fly down to San Antonio, TX to attend SEEK 2017. I was also coming out of the woods so I ventured back into the NICU but made sure to wash and sanitize myself every few minutes! Since Jonathan was gone, my mom stayed at the house with Josie and took care of her all day while I stayed with Charlotte.
The house we’d been staying at, while awesome, was 25-30 minutes from the hospital. You can only imagine how much we spent in gas money that month doing several roundtrips each day! I got a call saying they had a spot at the brand new Ronald McDonald House across the street from Children’s. It was gorgeous. The rooms were like a hotel. The living rooms were so comfy and the dinning room/kitchen had a giant glass enclosed playroom off of it where kiddos could play. Oh and they also had a Golden Doodle named Mac that Josie became OBSESSED with. We were so grateful a spot there opened up so I could walk to the hospital but also have access to a kitchen during the day to cook meals. The families we met there were also invaluable as we all got to lean on one another while undergoing some of the hardest chapters of our parenting journeys.
Charlotte’s big task after getting off the vent and oxygenation well was learning how to feed. They predicted she’d have trouble for several reasons. She had a lot of choking going on so we literally had to take it one feeding at a time. We’d offer her bottle and then whatever she didn’t finish in a 20 minute window, she’d get through her NG Tube. With almost every feed she’d do better than the last, which was encouraging since her first feed she only took 9ml…so I thought it would be forever before she’d be able to take the 75-90ml at a feed a baby her size would typically take. We were even told sometimes the feeding issues would take longer to overcome than the initial respiratory! EEP!
It took her a little over a week before she decided to suck down an entire bottle but once she gone and done it, the girl never looked back. She was slamming the bottle consistently so it was suddenly time for us to move into a live-in room to take over her care completely before discharging. I packed up our van with ALLLLLLL the things we’d accumulated in Arkansas and sent my mom and Josie home, knowing we’d only be a few days behind them.
Jonathan flew back to Little Rock on Saturday January 7th right as the Docs said that if by 9am the next morning she’d continued taking her feeds, we would be discharged immediately. Just in time!!
We could hardly believe it was happening so fast. It’s as if she decided she was done with the hospital and it was time to get home! Fine by us, Charlie! 🙂 On January 9th we were discharged from the hospital. We took that last night in Arkansas to visit with her birth family one more time since it’ll be a little while before we make a trip back down South.
The next morning we hit the road to beat Winter Storm Jupiter (which ended up not being as big a deal in Nebraska as they thought it would be!) Charlotte did great on the trip and it was soooo very good to get home and start the settling in process.
It’s funny because while we were in Arkansas for six weeks, it felt like we were never going to leave and we couldn’t imagine life beyond the hospital walls. Here we are, two months since we were discharged, and its starting to feel like a bad dream. It’s getting hazy. It’s harder to recall the horrendously negative emotions I all too often experienced. And when I look at Charlotte, I can’t picture her face with tubes anymore unless I look at a picture.
We’re humbled and grateful we got to see Charlie completely heal and come home. We’re filled with thanksgiving when we think of ALL THE PRAYERS that were lifted up on her, ours, and her birth family’s behalf. We praise God for seeing her through this rocky road and restoring her. Thanks again to everyone who walked this road with us. We couldn’t have done it without you.