We drove away from the hospital full of excitement and fear. Being a first-time parent is scary enough, but being a first-time parent of a child who is reliant on the machines they are attached to is terrifying. We felt confident we could do it, but honestly, we weren’t sure exactly how. But as with all things related to Teddy, we took a deep breath and dove in headfirst.
My mom was still in town, so she got the house ready and had a “Welcome Home” sign and balloons ready to greet us. As scary as it was, walking into our house for the first time felt amazing. We were finally home all together. We took a deep breath and began coming up with a plan to manage it all. We found out we were potentially coming home, we had scrambled to get together baby supplies, which not only meant tiny baby clothes/diapers, pack-n-play, and a bassinet, but also an IV pole, a basket to carry machines in up and down the stairs, a battery pack that we could plug his equipment into as we walked around the house, and more medical supplies than we knew what to do with. I will tell you what, a NICU nurse is the absolute best at sneaking you bags and bags and bags of extra supplies, so you are set for months!
We got home in the early afternoon and settled in. It felt so weird being able to hold our baby not tethered to a hospital monitor. It was nice to snuggle and play without monitor alarms going off, nurses coming in to check on us, and constantly rounding doctors. Teddy was wide eyed and taking everything in. He seemed so excited and confused but loved every minute of it. I can remember lying in bed with Teddy lying next to us and thinking just how lucky we were to be having that moment. There were so many times I thought it wasn’t going to be possible, but there he was alive, strong, and HOME.
I am not going to lie, the first night was terrifying. We were told insurance wouldn’t provide a home nurse and since he didn’t come home on oxygen, we also didn’t have a monitor to keep tabs on his oxygen and heart rate. Could we sleep while he slept? What if his suction stopped working and he started choking while we were sleeping? Thankfully, Teddy was always an amazing sleeper and rarely had any issues overnight. Once he was asleep, he rarely woke up. We thankfully also had ordered an Owlet oxygen monitor, which wasn’t perfect and the doctors didn’t recommend, but to us was definitely better than not having anything. So we all snuggled in with the Owlet app open on the phone and Teddy safely sleeping in the bassinet attached to his suction machine and feeding pump.
The next morning, we woke up breathing a sigh of relief. We were exhausted, but we did it! We made it through the first night! Teddy did amazing and slept soundly the whole night. Jason and I dozed off and on but did manage a couple hours. The equipment all worked perfectly, thankfully. The next day brought a few scares with a clogged suction tube and some elevated breathing, but overall, we managed and found a routine and tried to remain calm. We took it easy and just tried to find a routine. We all laid in bed and played. Then we went downstairs, played and napped. We did his medical cares and made sure the suction remained working. We remained scared, but also felt like we just might be able to do this. We made it through another great night and breathed another sigh of relief.
The next morning, we got ready to tackle our first time leaving the house to take Teddy to his first of many outpatient doctor appointments that had been scheduled. As we loaded Teddy into his car seat and started getting everything together, I noticed his color started to change. He started looking pale and gray and breathing heavier. I asked Jason and my mom to make sure they saw it too. He was crying, because he hated the car seat, so we thought maybe that was it and pulled him out. It got better once he calmed down, so we tried again and again he started turning gray. I put on the owlet and Jason called the NICU doctor. As she started asking questions the owlet confirmed our worries, Teddy’s oxygen was in the low 80s. His baseline was 94 and anything below 90 required oxygen support. We told the doctor on the phone, and she said it was best to head straight to the ER. So, we loaded up Teddy into the car, scared to death with a 20-minute drive ahead of us.
Once we got to the ER, they took us back and his oxygen had gotten lower. They put him on oxygen support and decided we needed to go back to the NICU because they didn’t know why it was dropping. As they wheeled us back to the same room we had left two days earlier, we passed by one of our favorite nurses, the one that had walked us to the car two days earlier giving us a hug and telling us we could do it and we were ready, and she believed in us. As my eyes met hers, I completely lost it and started bawling, feeling like I had failed my child and her.
