It’s Almost Time To Come Home
Once Karlie was all healed from the tracheostomy surgery, she began to thrive. Her breathing was finally under control and she was so much more mobile. We began working with the physical therapists more and more to help Karlie build her strength and reach her developmental milestones. Karlie had spent most of her time laying down so even sitting up assisted was a lot of work for her. She could sit up for a few minutes before she got tired and had to lay back down. We practiced sitting her up every day and watched her strength and stamina grow. We were also able to get Karlie out of bed to play on an activity mat. Tummy time was a huge challenge with her omphalocele and trach so we focused more on showing her how to reach for the toys hanging above her. Karlie loved being out of bed and it was so fun for us to feel like we were doing normal baby things with her. Obviously our whole set-up was not normal but we didn’t know any different. We were happy and it finally felt like we could take care of our baby on our own.
Once Karlie was officially weaned off of her medications, the next goal was to get her feeds to the full volume that she needed. They increased the volume by 10-20 ml every 2-3 days and Karlie was tolerating it wonderfully. She was no longer vomiting, maybe little spit-ups here and there but that was it. Her doctors finally started talking about Karlie coming home!
The next major milestone we achieved was getting Karlie out of bed and into her stroller. The physical therapists wanted her to be comfortable sitting in her stroller and get used to the motion. It was quite an ordeal the first time we put her into her stroller. I believe it took 4 people to move her! Karlie was so happy once she was all situated in her stroller. She had the biggest smile on her face and thought it was incredible. We weren’t able to leave her room because that would be another big ordeal so I just gently pushed her back and forth and side to side. We got Karlie into her stroller at least once a day after that and she loved it every time. We would play with toys or just play with her and be silly. As the weather got nicer, the doctors gave us the okay to take Karlie on an adventure to go outside for the first time! The nurses arranged the whole thing between all the teams involved and it was quite an event. We had quite the entourage with us to bring Karlie outside. The hospital had a private garden we could visit so I was excited for Karlie to be able to look at something other than her NICU room. Karlie was more mesmerized by the polka dots on her stroller than anything else but it was still a great day.
Everything began to feel real once we had a meeting with all of Karlie’s specialists and discussed a plan for discharge. If everything went according to plan, Karlie could come home on June 6th! There were a lot of little things to get in order but the hospital had an amazing case manager who took care of all of it. Before Karlie could come home, both Sterling and I were required to complete a 24 hour stay at the hospital with Karlie. We were not allowed to complete the stay together, so we each took 12 hour shifts. I took the night shift and then Sterling spent the day with Karlie. We could still have assistance from the nurses of course but the idea was that we were the sole caregivers for Karlie during our shifts. It’s what I had been doing for months so for me it was a piece of cake. Our pulmonologist and case manager really pushed for us to have in-home nursing once we brought Karlie home. I didn’t love the idea at first because I felt like I had already spent so much time having other people take care of my baby. I wanted to do it all myself. That’s just not realistic and although we were confident taking care of Karlie, we needed the extra help. We luckily found a nursing agency that had nurses available right away. Everything was falling into place and June 6th was just a few weeks away at that point!
Another task that had to be completed before Karlie could come home was the car seat challenge. Karlie had to sit in her car seat for 90 minutes while her heart rate and oxygen levels were monitored. If her heart rate and breathing remained stable during the challenge, she would pass the test. Karlie passed with flying colors! She had no problem sitting in her car seat and even fell asleep for a good portion of the challenge. The hospital loaned us a special car seat for Karlie called a Jefferson car seat. It’s specifically designed for babies with omphaloceles. It has straps over each shoulder which click right over the baby’s chest, and then a strap over each leg that click together in between the baby’s legs. It leaves the whole abdomen area open. This keeps the omphalocele free from the pressure that normal car seat buckles would cause. Karlie had to have a special brace made to cover her omphalocele and keep it safe while she was in the car seat. We called it her turtle shell because that’s what it looked like. It was a hard plastic shell with a strap on the back. She didn’t seem to mind the shell at all and it was easy to get on and off. Once Karlie passed her car seat challenge, we actually practiced getting her into the car. We had the help of our NICU nurse, respiratory therapist, and physical therapist. Karlie required many hands and involved so many moving parts! We wanted to be as comfortable as we could when it actually came time to bring her home. We were feeling confident and June 6th couldn’t come soon enough!
