Stetson's Home Coming

After learning that Stetson was on life support we knew we needed to go to the hospital together the following day. Levi only worked a half-day so he and I could drive down to Primary Childrens that afternoon. While at the hospital we continued to be trained on Stetson’s equipment and gain understanding how to best care for him at home. We were happy that Stetson would be home in a few days but, sad all at the same time. Stetson would be leaving the hospital in the most tragic way possible, sick, broken, and unable to heal. Still the night before Stetson’s arrival I felt like a child on Christmas Eve, anxiously excited. 

We enlisted the help of many earthly angels to prepare the house for Stetson. Setting up the nursery, cleaning the house, and unpacking the remaining boxes from our move. I never got the chance to truly decorate a baby nursery before, Georgi stayed in our room for her first year of her life and once she had her own room it was pretty basic. I badly wished Stetson could be in our room, however all his equipment made that impossible. Decorating a nursery for him was special; even knowing that he would only be in it for a little while I was proud that we had a room dedicated to him. His nursery was complete with a beautiful quilt hanging on the wall with his name embroidered on it. A bookshelf in the corner to hold all his extra tubes and medical dressings. A white and gray rocking chair that was donated to us so Stetson could have all the things that a newborn should have.        

Stetson had to be transported by ambulance in order to make it home safely and the welcoming committee was more than we ever expected. The members of our ward lined the street, holding balloons and handmade posters. People that admittedly I hardly knew; yet they all came to welcome Stetson home. Family was there too, my parents, siblings, Levi’s siblings, etc. We decided to have Georgi stay with Levi’s grandma because she would want to hold Stetson immediately and it would take awhile to get Stetson settled. The last thing I wanted to do was tell Georgi “no” to holding her little brother. Although she is little, she had waited far too long to hold and snuggle her brother. It would have been an unrealistic expectation to have her wait for so long in her own home.

Finally the ambulance arrived. Everyone clapped and cheered. The life flight team informed us that Stetson traveled well as long as he had his binkie. One member of the life flight team said we could take our time and let everyone come take a look at him and give him a true welcome. Stetson would stay in his isolate and the life flight team would wait until we were ready to bring him inside and settle him in. We decided to allow everyone line up and one by one they came to greet Stetson, it reminded me of a wedding line. I was surprised that the life flight team was so accommodating but I appreciated it. So many people have supported us in our journey I couldn’t deny them a chance to at the very least get a glimpse of my baby. Some people in my situation may of handled things differently, knowing that they have such a short time with their baby they may of wanted to keep them all to themselves. But I want people to know who Stetson was. I want many to remember him. He is a choice spirit and deserves to have the world know who he is. One by one people came and gave their support and congratulations. Those who came to support us got to see my beautiful baby alive and it was wonderful. 

After everyone had a chance to come and see Stetson they went on their way to enjoy the rest of the day. Levi and I waited in the garage with Stetson and the life flight team. The Hospice team hadn’t sent all the equipment like we originally thought causing us to wait in the garage for sometime. After awhile they finally arrived and we were able to bring Stetson into his room. 

We wrapped him in a bright Yellow knit blanket and Levi carried him down to our basement apartment. Once many others and we crowded into his tiny nursery it was an overload of information. We signed papers, got more training on his equipment, met with nurses, and spoke with a social Worker. It was very overwhelming and took several hours before we finally got our home to ourselves. 

Finally it was just Stetson, Levi and I. We decided to let Georgi stay the night with family over the weekend as we tried to get over the learning curve of caring for Stetson. Every night a nurse would come to our home to help train us on his cares and the schedule of his medications, flushing of tubes, changes in tube equipment, etc. We hung a white board in the nursery and it had scribbles of information all dedicated to Stetson. It’s amazing how much care one tiny little person needed and we were plunged into a world of being Stetson’s parents and nurses. Being a parent is already a daunting task but Stetson brought that task to a higher and more fragile level. 

I sat in the rocking chair holding my swaddled sleeping baby. Levi sat across from me. The sun was starting to set and I was loving every minute I got staring at my baby finally home after a month in the hospital. I was thinking about all the wonderful things I’d get to do with him, bathe him, dress him, get family photos, have Georgi hold him, I was filling my mind with all the wonderful memories I’d get to make with him. 

Levi broke the silence and we chatted about how great it was to have such a large welcome party for Stetson. Levi said, “when I came outside I almost cried.” Then he mentioned that it made him a little sad having people line up to see Stetson, that it reminded him of a funeral. I have never been to a funeral and I suppose my own child will be my first one. I don’t know what to expect or how it’s done. I just said, “Oh it reminded me of a wedding.” I could tell Levi was thinking about how little time we would have with Stetson and what would come soon for our family. I wanted to help him take his mind off the tragedy that would greet us. “It was good to have people meet Stetson. Now he will be remembered by more than just family.” 

Before the nurse came we kept Stetson in his bed swaddled and sleeping. While Stetson was relaxing Levi and I made a schedule for family to come see him. We didn’t want to overwhelm Stetson but we also didn’t know how much time we would have with him and we wanted to ensure that he met every family member that came to see him. We decided to break up the day so not to overwhelm Stetson and us. Levi’s family would come in the morning and my family would come with Georgi in the afternoon. We dedicated a time to Georgi and us to hold and see Stetson without interruption. After she had sometime with him we would have her spend the night with Levi’s family so that way we could have another night to adjust to our new nursing responsibilities. After informing the family of the plan we waited for the nurse to arrive. 

While she was there I decided to attempt to bathe Stetson and dress him. I imagined bathing him would be this loving and peaceful moment. At the Hospital Stetson seemed to really enjoy getting a bath especially getting his hair washed. I desperately wanted the smell of the hospital off of him and I attempted to sponge bathe him in the crib because he was still hooked up to all his lines and still had his cord stump. This was far more difficult than I expected and wasn’t at all how I imagined. I ended up just washing his head and tried to be as quick as possible because Stetson was not enjoying my clumsy efforts. I also learned that he couldn’t get as clean as I would have liked, I couldn’t wash his face well because of all the stickers he had on his face holding his nasal cannula and Anderson tube in place. His skin was also incredibly dry and flaky but lotion was out of the question because the oils would prevent his bandages and stickers from being secure on his face and he was constantly being swabbed with alcohol in order to keep everything sanitary. The poor little guy was fussing the whole time and I felt incredibly incapable. After what felt like an inadequate bathing, I decided I wanted to dress him. I pulled out a light blue baby gown from a drawer. I figured a gown would work best due to his swelling and all his tubes and lines could be fed through the bottom. However, I quickly learned my idea was flawed. Going over his head would be difficult with his nasal cannula and Anderson tube and going by way of the bottom would be difficult with his IV nutrition going into his central line. I finally decided pulling the gown up from his feet would be the least invasive and the IV lines had enough slack that they could be threaded through the head opening. I attempted and Stetson once again was fussy in my clumsy attempt. I managed to get the outfit on but it was too large and Stetson was very upset. His cries stressed me out and I felt like my efforts were comparable to a toddler trying to dress a baby doll. He sported the little blue gown for perhaps 60 seconds before I decided to free him from drowning in fabric. I laid his little diapered body in the bed and he was still crying, then suddenly I noticed his cord stump must have been snagged in the process of dressing and undressing him. I thought I was being so cautious of his stump but an IV line must have snagged it. He was bleeding a little. I freaked out, uttering panicked apologies to my baby. The nurse came in and told me that it was okay and he doesn’t have his nerves fully developed around the belly button and he would be all right. I cleaned him up and swaddled him and gave him his binkie. In less than a minute he was completely calm. My little mama heart was already feeling discouraged and the night had barely even started. The nurse helped reassure Levi and I. 

Stetson’s IV nutrition was cold and needed to be room temperature. Levi had to be the nurse's “chicken” and warm up the IV bag against his skin before we could hook it up to Stetson’s central line. The nurses waited until we could demonstrate the million step process and show competence although I truly felt incapable. While we waited I decided to change Stetson’s diaper as I was doing so he managed to get his little hand up to his Anderson tube and pull it out. Fortunately the nurse had an extra and I was picked to place the new tube. We swaddled Stetson tight and I laid him on my knees with his feet against me. The nurse held his head and gave me instruction on how to place the tube. I was incredibly nervous but she said it was easier than placing a NJ feeding tube which I have already done. She had me dip the tube in KY jelly before feeding it down Stetson’s throat. She cradled Stetson’s head between her palms and had the binkie ready with her fingers. I slowly fed the tube to the back of his throat and she popped the binkie in his mouth. With each suck I fed the tube in deeper until it was at the right spot. Stetson didn’t even react; it was like he was drinking the tube down as if it were milk. We swabbed his cheek with several swabs and taped his tube in place. I couldn’t believe how easy it was and I got some confidence back as the nurse praised me on my efforts. 

It was late when the nurse left. Levi and I were ready to endure the night with Stetson now that all his tubes and IV fluids were changed out and secure. We couldn’t find our baby monitor so we decided to facetime each other’s phones for the time being. We thanked God for the opportunity of having Stetson finally home with us. We knew the time wouldn’t be long. I suspected for about a week. But we were so grateful for the time we had and for the time we hoped to get. Stetson was our miracle. He had endured so much in his little life he deserved to finally sleep at home in a beautiful crib with shelves holding little treasures for him and to wear clothes and be swaddled in blankets that were just his. We weren’t sure what it would be like having to care for such a sick and high maintenance baby but we were ready and welcomed it because we finally had our little boy home.