Letting Go

(Warning: this post contains details describing the passing of a child and may be distressing to some readers)

The first night with Stetson home, I thought that I wouldn’t be able to sleep, but since Stetson was hooked up to all his monitors I actually slept soundly, confident that an alarm would alert me if anything were to happen. I only had to go into the nursery and interrupt Stetson’s sleep twice, once to change his diaper and the second to empty his Anderson Catch and give him some more painkillers. Stetson was on a cocktail of morphine and Lorazepam to keep him comfortable and calm. Ultimately comfort was the main goal of Stetson’s hospice care. However, we had the option of giving him more interventions if we felt like that would fit our family goals. Levi and I knew our plan and goals may change based on how Stetson’s health seemed. While he was in the hospital we only got to be with him for a few hours a day, having him home meant that we would finally get a full picture of his health. We would be able to see his comfort level during all hours of the day and assess our goals for him based on this increased understanding. Levi and I decided that we wanted as minimal intervention as possible. We didn’t want Stetson’s remaining days to be filled with doctor appointments, hospitals, surgeries, pokes and needles. We also worried about keeping Stetson on his supports for too long because we ran the risk of Stetson getting an infection from frequently changing his IV lines. With time Stetson’s other organs would begin to fail and we risked him being in more pain or having a less peaceful passing. It’s a strange conversation to have with your spouse, about when we should take Stetson off supports and allow him to pass. I felt incredibly guilty even thinking about the conversations Levi and I would have and continue to have. I felt like I was responsible for Stetson’s death and that it would be me taking his life as opposed to natural causes or accident. It’s not supposed to happen this way. No one should ever be faced with the decision to take their child off of life support. This is a decision my children should be faced with, for me, when I’m old and gray, not the other way around. I felt selfish if I kept Stetson on supports risking infection, more organ failure, more pain, and likely more doctor and hospital visits. However, I felt guilty for taking him off. How could I, as a mother, deny my baby medical intervention? I should be fighting for him, making the doctors learn more about how to heal him. But I knew I wouldn’t; I couldn’t fight for him in that way. I couldn’t watch my dying baby being forced to live with so much invasive medical care knowing that no matter how badly I wish there was a cure there isn’t one. Stetson was going to die, he was dying, and all his medical supports were just buying time. Levi and I just had to decide when we were going to let him go. Our first priority or bucket list item was to have Stetson meet as much family as possible. Levi’s family came Saturday morning to meet him. We decided to have only two additional people in the room at a time. We had everyone wash their hands and sanitize their phone before going in the room. Stetson was held by over a dozen people that day and he enjoyed every little bit of it. Every baby loves to be held and Stetson was no different. I think he loved it so much because he being deaf doesn’t get the same type of sensory stimulation as others. Stetson cried very little and was content being rocked by so many. My family came to see him in the afternoon. Georgi stayed with my parents the night before and when they arrived Levi and I took Georgi into Stetson’s room so we could have time with just the four of us. Although it wasn’t Georgi’s first time meeting Stetson it was the first time we were all together as a family in our own home.

Gerogi climbed onto the footstool and leaned over the crib to get a better look of Stetson who was swaddled in a white blanket. She reached in the crib and tried to give Stetson his orange binkie, “here you go” she said trying to push the binkie past Stetson’s lips. Levi and I let her interact with Stetson in the crib for a little bit before we let her hold him. Levi sat in the gray rocking chair and then pulled Georgi onto his lap. I got Stetson’s tubes and IV lines arranged so that Georgi could safely hold him. Levi supported Stetson and Georgi wrapped her arms around Stetson’s shoulders giving him a hug. She used one hand to occasionally press a finger against Stetson’s lips to “shhh” him (even though he wasn’t making any noise). She would move her body back and forth causing Levi to gently rock the chair so she felt like she was rocking him. She uttered in a small voice “I love you” and nuzzled her face against Stetson’s cheek. She held him for a long time frequently nuzzling his face and giving him kisses. It was the second introduction but it should have been the first, free of facemasks, nurses, and not in a hospital storage closet. The day was filled with people holding Stetson and other than the occasional diaper change and medicine administration there was little more I could do as far as traditional newborn care. Often I caught myself looking at the clock thinking, “I need to feed him”, or “He’s starting to fuss. I better nurse him.” I was surprised how much I had to constantly remind myself that Stetson couldn’t eat and if I tried to nurse him or give him a bottle it would hurt him and make him uncomfortable. It was unnatural telling myself “my baby doesn’t need to eat”. He got all his nutrition through two plastic tubes feeding into a central line in his chest. Stetson didn’t fuss for the want of food but because he was in pain from his swelling, or pain from a dead GI track and gas build up in stomach. If Stetson didn’t need more medicine or a diaper change we would hook a syringe to the end of his Anderson Tube and pull air and gastric juices from his stomach to give him relief. Then swaddling him and giving him his binkie were the other needed steps to ensure that he was comfortable.

Levi and I spent the day in Stetson’s room handing him off to the many visitors that came to hold him because this may be their only chance. Later after everyone left and the nurse had come and gone, I held Stetson skin-to-skin. After about two hours I decided it was time to put him to bed. I laid him in the crib and decided to change his diaper before wrapping him up. Once I was done I looked up in time to see Stetson stretch his little arm up and catch his tiny fist under his Anderson tube and pull it from his mouth. I told Levi and we attempted to place the Anderson tube back. I tried several times, but each time I choked Stetson and he threw up. I was getting flustered and upset. I was causing him discomfort and I was angry that I couldn’t place the tube easily like I had before. Once again I tried and again he threw up. Finally after three tries I got the tube placed. The tube was in the right spot but it wasn’t down far enough and Stetson was fussing so much that I couldn’t push it down further. I told Levi that I was getting too worked up and I had to leave the room. When I left Levi called the nurse and over the phone instructed him on how to get the tube down further and secure it in place. Thankfully Levi was able to calm Stetson down and secure the tube well enough that we could wait until the nurse came in the morning to adjust it and make it more comfortable for Stetson. Sunday we didn’t block out specific times for people to visit like we did Saturday, we let people come all at once and stay as long as they wanted. Just as long as they left before the nurse arrived that evening. Around 1:00 we planned to have Stetson’s baby blessing everyone got dressed in their Sunday best. I wanted to wear a new dress I had, it is black with white flowers but was torn wearing a black dress because I didn’t want it to look like I was already attending a funeral (Levi and I decided we didn’t want anyone wearing black at his funeral). Eventually I decided that there are enough white flowers on the dress to make it seem cheerful as opposed to gloomy. Once I was ready I pulled out all of Stetson’s white outfits to decide if I was confident enough to dress him again. He had three white or cream colored gowns. Two were too large even if I managed to dress him they would have drowned him. The other white gown would have fit him perfectly but I decided I hadn’t yet recovered from the dressing fiasco on Friday. With no white gown selected I decided to wrap him in a blanket that was sewn into a sack. The sack had several large buttons down the front. I opened the sack and laid Stetson inside. When I buttoned up the blanket I threaded his IV lines and po-sock monitor in-between the buttons. Next I moved Stetson from his large oxygen tank to a portable one. Levi came into the room to help me move Stetson from his nursery into our living room. I had the small oxygen tank strapped over my shoulder and I held Stetson in my arms. Levi followed closely behind with the IV poll. As we walked out of the room the house was filled with reverent silence. We had everyone gather in the living room with Stetson in the center. Extended family and friends that couldn’t be with us joined us over zoom. I handed Stetson to Levi and all the priesthood holders gathered around him. As Levi spoke the spirit filled the room. I listened intently to the words that were said. I hoped that maybe some profound words would indicate that Stetson was going to miraculously heal that his mission on earth wasn’t coming to an early close. Though I knew deep down no such promise would be made. Knowing this I wished for some understanding as to why my baby would leave this earth so soon. I didn’t get such clarity.

The blessing Levi gave spoke of Stetson only needing to come to this earth to receive a body. I know that this truly was a blessing. Stetson was being saved from all the trials and heartache that come with this mortal life. But I still wish I didn’t have to endure watching him go.

Sunday was the day everyone was to travel home. Levi expressed to me that his mom was willing to stay and help with Georgi and he thought it would be a good idea. I wasn’t thrilled by this suggestion. In fact I got a bit upset about it. I really wanted time alone, just the four of us. I protested, but Levi insisted telling me that he really felt like it would help us a lot and we could focus on Stetson knowing that Georgi was also getting the attention she needed. I reluctantly agreed. And I’m so glad Levi pushed it because having my mother in law there turned out to be a huge need and blessing.

That night the nurse came to change the dressing over Stetson’s broviac catheter. Levi’s mom was getting Georgi ready for bed while Levi and I assisted the nurse. We moved Stetson’s crib away from the wall and laid Stetson on top of a chux pad in the center of the crib. I had to hold Stetson’s arms above his head to ensure he wouldn’t pull on the central line or move around as the nurse changed his medical dressing. I sat on a footstool and pressed my head against the crib railing. I didn’t want to watch as the nurse re-dressed his wound and I didn’t want to see my poor baby red in the face crying. Levi rubbed my back and asked me if I was okay and if he needed to take over. I shook my head “no”. I knew he wasn’t in pain but was just uncomfortable. I just hated seeing him crying. I felt like it hurt him to cry and that it was hard work on his weak little body. Levi and I also made the decision to take Stetson off of his lipids (fats) that night. This would get rid of one of his IV lines. We decided to slowly pull back on his nutrition giving his body time to adjust and allowing him to be more comfortable. It’s hard knowing that we pulled back on his nutrition. We decided to slowly take this support away because Stetson could and would die while on it. We wanted to be able to hold him and spend time with him without lines and machines before that happened. We also knew that we were forcing his body to do work when it didn’t want to, causing discomfort. After the nurse was finished we let Georgi in the room to say goodnight. She was very excited to hug him goodnight but Stetson was over-stimulated and started fussing when Georgi started touching his feet. His heart rate monitor started beeping and blinking red signaling an increase in his heart rate. We had Levi’s mother take Georgi out of the room and Stetson relaxed.

Once Stetson was settled down and all his medical dressings, tubes, and IV lines were taken care of I just held him skin to skin before bed. I held Stetson skin to skin every night. It was just him and I slowly rocking back and forth. Most of the time I’d just stare at him, thinking how cute he was and how much I love him. I’d place my hand on his head and rub him with my thumb. Occasionally, I’d use my fingers and trace his face, trying to see if I could get a little smile, sometimes I would. I’d take his little hand in mine and kiss it and press it against my cheek. I also kissed Stetson in a very specific way so he knows it's me since he can’t hear and often is too sedated to open his eyes. I think Stetson saw my face less than ten times. It's insane how your children become your whole world and these little moments will be all I have left with Stetson. Monday we had the nurse come in the afternoon, since we were more confident in changing his IV lines and could change them in the evening without assistance. The nurse noticed that Stetson was definitely jaundice, which she explained is typical when someone is on IV nutrition. This meant that Stetson’s kidneys weren’t working as well as they should be. Stetson also developed a hernia and we worried it would get worse and cause more pain. We didn’t want him in pain and we didn’t want him to go through surgery. Even though Stetson had a hernia and no longer had lipids he looked a lot less swollen and more comfortable. It was really hard for me to wrap my brain around the idea that less nutrition made my baby more comfortable. When I said this to the nurse she said “it's easier on his body.” Before she left she would ask, “Do you need anything else.” I said, “No, just as long as we're doing the right thing.” To which she responded, “you are, you are doing the right thing. It’s hard letting go. But I’ve seen families hang on and that’s hard too.” Each day we assessed Stetson’s comfort level to see if there was any foreshadowing of new symptoms. Daily we discussed when we would pull back on supports and how much we would pull back. This conversation became exhausting. Every time we discussed it I became emotional. I never felt confident that we were doing the right thing. Each support we took away felt like I was taking a lifeline from Stetson. Yet I knew he wouldn’t last even with the supports. I became worried that Stetson would pass on his supports and I would miss the chance to baby wear him, dress him, and bathe him. I didn’t want Stetson to die confined to his room with tubes and lines attached to him. I was in a situation where no matter what path we chose I felt selfish and guilty. I prayed each night that Levi and I would have clarity to know what to do and when. I even prayed that maybe we would take him off his supports and he would be fine, he wouldn’t die, and he’d grow up with Georgi. Deep down I knew this wouldn’t be the case. I was at a constant battle with myself. I had to frequently remind myself that despite Stetson acting like a typical newborn, sucking a binkie, sucking on his hands, yawing, sneezing, crying, pursing his lips, he was dying. He was dying and I couldn’t stop it. All I could do was try to make his passing as peaceful as possible. Throughout the week we had many visitors. We wanted to allow family and close friends to come and hold Stetson so he would be a physical memory to more people than just us. We also received visits from our social worker and a chaplain. Although I was open with how I felt to the chaplain I didn’t have much confidence in the things he told me. He did his best to reassure me and to help me feel confident in the decisions Levi and I made and would make. Meeting with the social worker was the same story. No matter what people told me I still felt guilty. Earlier in the week Levi and I decided to discuss taking Stetson off his current nutrition of TPN and move him to D10, which is essentially sugar water. The conversation was difficult and I cried the whole time. Levi reminded me that no matter what we decided we could change our mind, at any point we could put Stetson back on as much support as we wanted. We could even bring him back to the hospital and they could care for him until the supports would fail. Every decision we made we could reverse. But I didn’t want to, I knew I couldn’t put Stetson through all that intervention just to buy myself time. I knew that I wanted to hold him without tubes, lines, and machines. I knew that I wanted him home away from the hospital smell of sanitizer and Band-Aids. I knew that I wanted him comfortable and I wanted him surrounded by family. I worried Stetson wasn’t going to make it before we took his supports off. I worried he would go in his sleep before Friday. I decided to contact the photographer to plan a time for family photos. We decided on Thursday though I still worried he wouldn’t make it. Every night I just prayed that Stetson would make it one more day; we weren’t ready to let him go yet.

Wednesday I got braver and decided to dress Stetson. I selected a navy and white striped gown. My hands were no longer clumsy. I easily threaded the IV line through the neck opening without it getting caught or tangled on his nasal cannula or Anderson tube. I even got to put little socks on him. I stood back and looked at him and gushed at how cute he looked. I put a hat on him but decided he looked better without it. I was a little disappointed I waited so long to dress him but glad that I got to while he was still with us. I was confident enough to take Stetson out of the room and put him on his portable oxygen tank to be in the living room with my mother in-law and sister. Later that evening we took his po-sock off because he was doing so well with no dips in oxygen or heart rate. Although I occasionally took Stetson back to the room I kept him on his portable oxygen tank to avoid the hassle of switching him back and forth. Having him out of his room was really enjoyable because we got to enjoy the company of others. After we got Georgi to bed Levi wanted to hold him and watch some sports. We stayed out in the living room for quite some time. It was getting late and I decided to do skin to skin with Stetson. When Levi handed him to me he looked a little pale. Levi said he probably was just comfortable being held. I held him for a bit examining his face. He looked slightly purple around his eyes and lips. I moved him around and he didn’t respond. I put my hands under his armpits and supported his head with my fingers and I held him out in front of me (something he hates). Still he didn’t respond. My heart sank and I began to cry “Levi he’s going, he’s going to go”. I hugged him and kissed him. I pressed his face against mine. I was crying the whole time, wishing I had more time. He was still with us but he couldn’t breathe. Levi ran to the room and put his po-sock back on. The alarm rang with his heart rate and oxygen levels so low. Then Levi checked the oxygen tank. It wasn’t on. Levi cranked it open and turned the flow up high. Stetson gasped as we pushed oxygen into his lungs. He’s color gradually came back, again he was stable. Thank-goodness Levi stayed calm and was able to discover the problem. Somehow moving Stetson between the living room and the nursery the tank got turned off. It didn’t matter how the tank turned off, I was just grateful that we got at least another day with Stetson.

The next day we scheduled family photos at our house. We scheduled the nurse to come after photos so she could help us put Stetson back on his IV line and place his Anderson tube. We decided Stetson would be stable enough to take photos without his major supports, though we left him on his nasal cannula. We had him swaddled for pictures and we took all his stickers off his face. For the first time I felt like I could see his whole face free of obstruction. He was so beautiful, and I was amazed how much the swelling went down in his face and neck, he actually had a neck now. I was sad the nasal cannula had to stay but we tried taking a few photos without it and it was clear he needed it even though he was on a low flow. Levi and I timed his medication just right so he was comfortable the entire time we took photos. Stetson loved being swaddled as it was comforting to him.

(Photo Credit: Amber Rust @ www. twocolorphotography.smugmug.com)

(Photo Credit: Amber Rust @ www. twocolorphotography.smugmug.com)

(Photo Credit: Amber Rust @ www. twocolorphotography.smugmug.com)

(Photo Credit: Amber Rust @ www. twocolorphotography.smugmug.com)

When the nurse arrived she assisted us in hooking Stetson up to his D10 line. In the short time the line was disconnected blood had clotted in it and it took some effort to flush the line and clear the clot. Stetson didn’t seem to react at all to the nurse clearing the line. She also tried to get Stetson’s Anderson tube back in. Unfortunately, she tried three times to get his tube back in. Poor Stetson choked and gagged and threw up on a few of her attempts. His throat was just too dry to get the tube down. The nurse said she didn’t want to keep trying causing Stetson and I both stress and discomfort. We decided to see how Stetson did without the Anderson tube and we were instructed to call the nurse back if he seemed uncomfortable. I was glad to not have the Anderson tube. I found it to be a pain to deal with and I liked that I could see more of Stetson’s face. That night Levi’s mom left us to return back home. Although I wasn’t super thrilled to have help, it turned out to be invaluable. She watched Georgi, made meals, and allowed Levi and I to get the sleep we lacked. I’m so glad Levi insisted we have help. The night without her turned out to be a disaster. Stetson frequently had his oxygen and heart rate drop. He was able to stabilize himself but it happened so often I wondered if it was a sign he was going to pass soon. We ended up calling the nurse three times that night. The first time was to ask if his frequent dips were an indication that he was near the end of his life. She said that she couldn’t answer that because everyone is different but if he was stabilizing than I shouldn’t need to worry through the night. The second time was to ask about pain medication. Stetson could not settle down and we could tell he was in pain because he would furrow his brow, get red in the face, and let out a weak scream, not a cry a scream. The nurse gave us the “okay” to give Stetson more painkillers. We ended up giving Stetson three doses of morphine in a three hour time period, trying to get his comfort level back up. Eventually, we called her again asking her to come place the Anderson tube to give his stomach relief from pressure build up. It was approximately 4:00am when she arrived. While she and Levi were getting the Anderson tube ready, I heard Georgi crying. I went to check on her. When I got in the room she told me her tummy hurt and then seconds later she threw up. I ran her to the bathroom and plopped her in the tub. I had to strip all her bedding from the bed and toss it in the washer. Once I got her cleaned up and sheets back on her bed it was after 5:00am. Georgi ended up throwing up two more times that night. Stetson was still in pain and fussing. Levi finally got to bed at 5:30am. I stayed up with Stetson rocking him until 6:30am. I called my sister to pick up Georgi so Levi and I could catch up on sleep once she woke up. Levi and I were able to get some much needed rest but as we were taking care of Stetson his alarms started going off. We waited a few seconds to see if he could stabilize but he didn’t. He started to turn purple. I picked him up and pressed my face against his “my baby, my baby.” I said in a panicked voice as I tried to hold him and rock him. Levi was crying and turned up the flow on his oxygen tank “why isn’t it working.” Stetson was dying and there was nothing we could do. We were sobbing, shouting Stetson’s name, gently shaking his arms trying to get him to take a breath. I asked “what should we do? Should we just hold him now?” Levi still at the tank with tears flooding his eyes said, “I don’t know”. Finally, Levi turned the flow to the max and Stetson let out a cry. I rocked him trying to help him relax and stabilize. This was the second time Stetson started to fail while on supports and my heart was failing with him. When the nurse came we told her what happened. She asked “Was that scary for you?” we both answered “yes”. We didn’t know what to do and we didn’t know if we should do anything. The nurse told us that it would be perfectly fine if we decided to not do anything. She also said it is perfectly fine for us to do something. Again she reiterated that we could choose to give Stetson more support if we needed to. We expressed to her that with the alarms going off we feel like we need to do something and we can’t just let him go. She told us that it’s perfectly acceptable to take the monitors off or to do more intervention. She could tell that we were struggling with what was happening. “Tell me how you’re feeling?” she asked. I shrugged my shoulders as tears filled my eyes. “Talk to her honey.” Uttered Levi. I unloaded on her. Again I expressed “I feel like I’m killing him. I logically know that his body is failing him and that there is nothing that can be done and he will eventually die even on supports. I logically know that. But I feel like as a mom I should be fighting for him. I should be giving him all the support he needs to let him live. How can I as a mom let him go. No matter what I do I feel incredibly selfish and guilty.” The nurse stared at me intently as I managed to choke out how I felt. Then she spoke. “You’re not killing him. You’re not.” She went on, “ you have been given a trial that no parent should have to face. And you have handled it with a lot of grace and a lot of courage. You guys are the power parents and we have nothing but respect for you. What you’re doing is hard and is very unselfish. You’re right your job as a mom is to fight for your child. Making sure your child is comfortable and not in pain is also your job. You can at any time decide that you want to do more intervention and you can also decide to take him off and both are completely acceptable.” I don’t remember everything she said but as she talked I felt relief and some understanding and I knew no matter which path Levi and I chose, it was going to be difficult. Before she left Levi and I asked some questions about what it would look like before Stetson passed what we would see. She told us he would become cold, unresponsive, and have color changes. She also mentioned that the body does some things that may seem scary and look uncomfortable but Stetson wouldn’t be in pain, it's just how the body reacts when it shuts down. She also said the doctor increased Stetson’s pain medication and to give it to him even if he didn’t seem like he needed it. Levi and I went back into Stetson's room once again and the monitor sounded the alarm. I picked him up and sat in the rocking chair. Levi again fussed with the oxygen tank. Again we were crying feeling hopeless. I muted the alarm and said, “Quick give him a blessing.” Levi was distressed and responded, “I don’t know if I can.” I encouraged him to do so. Before he knelt down Stetson recovered and stabilized again. Levi blessed him not to be in pain and to peacefully go when the Lord calls him back home. After Levi finished we looked at each other, tears in our eyes and we just knew we needed to let Stetson go. Levi was holding Stetson in his arms now and I removed his po-sock from his foot and turned the monitor off. Once again Stetson turned purple and stretched his head back and strained his face as he made a choking noise gasping for air. We both looked at him in fear seeing our baby trying to grab air. Levi’s tears poured from his eyes as he looked at Stetson then back at me “should we turn his air up.” I looked at him crying and put my hand on his folded arms, as I shook my head no. I knew it wouldn’t do any good, Stetson was leaving us and this time I had to be the strong one for Levi, he had carried me throughout our whole journey and it was my turn to be strong. I knew Stetson was going to leave us regardless of our efforts. But again, Stetson recovered and gained back his color. I asked Levi “Should I get Georgi home?” he nodded yes and I texted my sister to get Georgi home. As we waited we turned on church music and held each other. Levi worried that Georgi wasn’t going to make it home before he died. I told him that Stetson would wait for her. We removed his Anderson tube and decided we wouldn’t remove him from his IV nutrition until Georgi made it. We left his nasal cannula on and would leave it on for some time. I heard my sister walk in the house. I rushed out of the room and picked Georgi up, “Come say goodbye to your brother.” I brought Georgi in the room and we all sat on the floor holding Stetson in our arms. Levi clasped the broviac catheter and I unscrewed the IV nutrition from it. Stetson was now free of his tubes and lines; the only thing he was connected to was oxygen. My sister left and it was just our little family together in the house. Stetson’s color would turn red, purple, and pale then back to normal. His breathing slowed and became irregular. A lot of time passed and Georgina was getting restless. She was too little to understand what was happening. We moved Stetson to the portable oxygen tank and took him into the living room. We asked Georgi what she wanted to do with her brother and she said, “watch something.” We let her pick a movie and she selected “Tangled”. We sat on the couch as a family and watched the movie. Before it was over Levi suggested taking Stetson outside. We felt it was important for him to be out in the fresh air before he missed his opportunity. I dressed him in a white gown and beige hat. Stetson was still with us but his life was fleeting, he was unresponsive and very still. Though his breathing was slow and quiet, I could still hear his occasional groan and irregular breaths. I placed Stetson’s tank over my shoulder and placed him snuggly in my wrap so he was close to me. Georgi was insistent on bringing her baby doll in the stroller. We didn’t walk far just up our street and back. It would be Stetson’s first and last family outing. When we got back we fed Georgi dinner. While she ate Stetson felt very cold. I pulled him out of the wrap and held him out away from my body. He was pale and his lips were purple. “Levi I think he’s gone.” Levi came over and held him in his arms. He pressed his ear against his chest. We looked at each other, tears once again filling our eyes. Suddenly, Stetson gasped, bringing air back into his lungs. He wasn’t gone yet but he was very weak. Stetson hung on all night. We got to read scriptures as a family, sing our favorite hymns and we prayed together. Once Georgi went to bed Levi and I traded off holding Stetson. There were a few moments when he opened his eyes, although his eyes were open his face was pale and I prayed he wouldn’t die with his eyes open. I made sure Stetson didn’t miss skin-to-skin time. Stetson hadn’t missed a night without it and I wanted to make sure he got that time with me one last time. His body was very cold and I’m not sure he was even aware enough to even know that I was holding him. I kissed him my special way and kept telling him “mommy’s here,” even though I knew he couldn’t hear me. Levi and I held him close and just watched our baby’s life fade. He threw up a couple times but we reacted quickly and used the oral suction equipment to make sure his airway was clear. We weren’t going to let him choke and we continued to give him his oral pain medication to make sure he was comfortable. We even had some sugar water droplets that we gave him so he could have something sweet to taste.

It was past 1:00am and Stetson was still with us. Even though we wanted to stay up, our physical need for sleep was difficult to overcome. We decided to dress him in a soft gray gown and swaddled him in a blanket that had “cowboy phrases” written on it. We laid him on his pillow in-between the two of us and we fell asleep, our arms wrapped around him. I woke up at 3:17am and peeked at Stetson. He was still with us, breathing slowly and irregular. I picked him up and nuzzled him. I kissed him in my special way and once again said “mommy’s here.” I laid him back down and put my arm around him. I woke up to Georgi walking around in the hallway; it was a little after 4:00am. I looked over at Stetson and I knew he was gone. I grabbed the stethoscope to double check since he had fooled us so many times. There was silence, not even an echo. Georgi came into the room and crawled up on the bed and said, “Stetson, happy.” And she leaned over and kissed him. I woke Levi up. He carried Stetson to the bedroom and laid him in the crib. I called the night nurse and told her that Stetson was gone. When she arrived Levi was in Georgi’s room trying to get her back to sleep. I watched as the nurse unwrapped Stetson from his swaddle and placed her stethoscope on his chest in several spots then she looked at me and with sympathy said, “he’s gone.” I sobbed, I already knew that was the truth. She said nothing just stared at me as I held Stetson’s hand. “Now what do I do.” She said typically she cleans the body and when we were ready she would call the mortuary but we could have as much time as we needed. Levi got Georgi back to sleep and was now in the room with me. I told the nurse that I wanted to bathe Stetson. She removed his medical dressing from his chest, I was a little bothered that she didn’t use an adhesive removal wipe to do so but I said nothing. I took a wet wipe and thoroughly cleaned every part of his body as gently as possible. His flaky skin just fell off and I was able to see his body free of bandage residue and flakes. When I finished Levi and I stared at him for a moment. Levi uttered, “Now I can really see how sick he was.” The nurse came and tied his central line in a knot and cut it so the remaining line was flush with his skin. I then wrapped his diapered body in a yellow knitted blanket, the same blanket that we used when we carried him inside our home for the first time. I sat in the rocking chair and waited for the diener to come and take Stetson’s body to the morgue. I didn’t understand why some people say when someone dies they don’t feel like they're there anymore. When I looked at Stetson I could still feel him. Although he was gray in color and his lips were purple, I still felt like he was my baby. The diener arrived and gave his condolences. I asked him if they needed to cut Stetson’s body at all. He said for the embalming process they had to do a few small incisions but they would be minimal and they would be very respectful of his body. I was grateful he said that and I could tell he was sincere. In the past I worried that the diener doing the embalming process would make fun of Stetson’s swollen little body. I knew this was an irrational fear but for some reason I was very concerned about it. Wrapped up in clothes or swaddled in a blanket Stetson looked completely normal but unclothed you could see something was terribly wrong. Levi carried Stetson to the garage and laid him on the gurney. The blanket fell exposing Stetson’s feet. I carefully covered his feet back up and kissed him one last time in my special way. After a few moments a white sheet was laid over Stetson and the diener and the nurse wheeled him away.

Levi and I didn’t know what to do. We both weren’t sure how we felt. Once again I had my sister come and get Georgi so Levi and I could sleep. Once we were in our room, sleep wasn’t easy to come by but eventually we both fell asleep and didn’t wake up until the afternoon. No one tells you what to do once someone you love dies. The days following everything you do seems inappropriate. Levi and I didn’t really talk much but I decided to get ready for the day. I felt the need to put on my “Sunday best”. I thought if Stetson was meeting God that day then I needed to dress as if I were taking him there. I imagined Hannah might have done the same thing when she gave her son Sammuel to the Lord. (1 Sammuel ch.1, Old Testament) Levi and I ended up running errands of all things. We also went to pick up Levi’s suit for the funeral. I gave my family permission to stop by as they were driving through from Idaho. We ate dinner together and we showed them the cemetery where we would lay Stetson to rest. I don’t think Stetson being gone really hit me until late that night. Before going to bed I walked passed his room and I expected to see him sleeping in his crib. When I didn’t it actually shocked me. I viciously got pulled back into reality. I went into his room. It still smelled like him but faintly. I picked up the clothes he wore last and breathed in deeply trying to hang on to his scent because I knew it wouldn’t last forever. Stetson was gone. My baby was no longer with me but now an angel in heaven. I prayed he wasn’t in pain anymore. I prayed I did the right thing because part of me still wondered if I did. I prayed that all the promises of my baby being in heaven living with God the Father and his Son were all true. I sometimes still wonder if it is. There are times that I believe with all my heart that I will see Stetson again and other times I feel increased doubt followed by anxiety. However, I’m so grateful for my belief in God because I don’t know how I could survive without it. Even though sometimes my faith shrinks I’m reminded that doubting does me no good. Some people may read this and think that I’m brave or strong. The truth is Stetson and Georgi must have made a deal in the pre-existence(life before we all came here). They knew that Georgi had to come first because if Stetson were first I wouldn’t have other children. I wouldn’t want to be here anymore. My life would become empty and have little meaning. Georgi saved me. She is my earthly angel because if it weren’t for her, I wouldn’t want to be brave or strong. Georgi saved me and continues to save me. I don’t have just one angel baby, I have two. One lives in heaven and the other lives on earth.