Time Getting Cut Short

We were looking forward to going home. Stetson was eating well through his NG tube (feeding tube) and was breathing “room air”. We were talking about getting him discharged on Friday the 12th. Thursday, I brought the car seat in so that the nurses could do the car seat test and try to figure out how to comfortably strap him in without hurting his poor swollen belly and scrotum. All week I was meeting with Hospice care to get ready for him, bringing home oxygen tanks, feeding tube equipment, suction tubes, and an oxygen and heart monitor. I wasn’t able to hold Stetson very much during the week due to many people coming and bringing me equipment and training me on how to use it all. It became very overwhelming but I was so desperate to get him home where I would have time to hold him, rock him in a rocking chair, baby wear him, and get some really nice family pictures. In my head I had sort of a bucket list of things I would do with him before he left this earth. I was getting so close to bringing him home to be with me. Levi even said he wanted to hold him on the couch and watch sports because watching sports with his son is important to him. Levi and I decided not to tell family that he was going to get discharged. We wanted to be careful in case anything happened and we wouldn’t be able to take him home and it would be a wonderful surprise.   

However, on Wednesday things began to go down hill and eventually snowball into a massive mess. Stetson began to throw up all his food. He couldn’t hold down anything. Doctors began to wonder if the volume was too much for him to handle due to the pressure weighing down on his organs from the ascites (swelling). They decided to decrease the volume and slow his feeding pump down giving him only about 8ml of breast milk an hour. That didn’t seem to make much of a difference in his ability to hold down food. The doctors decided to try feeding him through an NJ tube instead. This NJ tube would go through his nose down to the stomach and into the small intestine. This tube isn’t as good as the NG tube because by passing the stomach meant that he would not get as much nutritional value but at least he would be keeping it down and absorbing enough to sustain him. 

The NJ tube has to be put in by X-ray because of how far down into the stomach it goes. They doctors sent Stetson to Primary Childrens to have the tube placed. Unfortunately the doctors were unsuccessful and sent him back to the U of U NICU until another attempt would be made. 

Thursday Stetson was again sent to Primary Childrens for another attempt to place the NJ tube. Finally they had success. Although the doctors were successful in placing the tube the x-ray showed that Stetson had a blockage in his small intestine. They believed it was the cause for all his feeding problems. They couldn’t see it on the previous x-ray because the stomach was shadowed and it wasn’t visible until the blockage moved past the stomach. 

The typical approach to removing the blockage would be surgery. However, due to Stetson’s prognosis and expected life span the surgeon wasn’t comfortable performing an invasive surgery. A different somewhat experimental approach was decided upon. We agreed to Stetson taking a medication that in some case studies showed success in helping break down this blockage that is called a bezoar. A bezoar is a stone like substance that forms in the stomach that is rarely ever seen in humans. The Doctors mentioned only seeing this bezoar a couple of times in their entire career. It’s believed that Stetson's bezoar formed because he wasn’t digesting his milk and it essentially crystalized and formed this stone. 

Although this was a setback we still were hoping we could at least take Stetson home on the weekend or at the latest Monday. Levi and I were disappointed that Stetson wasn’t ready to come home. Earlier in the week it looked promising. We were hopeful that Stetson could come home and spend several months with us before he left this world to return to his Father in Heaven. 

Even with all the delays we were excited to learn that we got special permission for Georgi to meet Stetson on Saturday. This was a huge deal because this request had to be reviewed by the hospital board. We were granted permission under the conditions that Georgi needed to wear a mask, be free of cold symptoms, and could only stay for 15 minutes. We were a little disappointed by the time limit and concerned that our 2 ½ year old wouldn’t keep a mask on her face but we knew we would make it work. When I told Levi the news he said, “do you think they granted us permission because Stetson is not going to be able to leave the hospital?” I responded, “I didn’t get that impression.” 

With some explanation of why Georgi had to wear a mask and play “doctor” and some bribery in the form of sour patch watermelons Georgi grudgingly kept her mask on. We were directed into a large storage closet next to the NICU. Two nurses wheeled Stetson’s bed into the closet. I asked Georgi “who is that?” Georgi exclaimed, “awe Stetson”. Levi held Georgi so she could see Stetson without obstruction. Georgi happily said, “Hi.” Then changing her tone slightly “awe booboo”. 

Georgi was excited to see him. She excitedly grabbed his hand and gave it a shake as if she was properly introducing herself. She played with his hands and “booped” his nose a few times. She was distracted by all of his equipment and kept the nurses and I on our toes as we directed her attention back to Stetson. Later she set back and looked at him and proudly announced, “okay! I hold him” as she leaned forward, both arms stretched in front of her; one hand ready to slide under Stetson's waist and the other on top of his shoulder. Unfortunately she couldn’t hold him but she had good form. With a little help she would’ve held him beautifully. Although the visit was short it was perfect. Georgi got to meet Stetson and the time frame actually was beneficial because so many other things distracted her. She blew Stetson several kisses and told him goodbye. Levi took Georgi back to the parking lot to wait for a friend to pick her up so Levi and I could have more time with Stetson. 

While spending time at the hospital Levi and I didn’t get a lot of time to actually be with Stetson other than the short visit with Georgi. We met with the hospice care team and got educated on more medical equipment. Stetson also had a busy and rough day. He got an x-ray and an ultrasound on his scrotum because it had become more swollen and bluish in color. The doctors wanted to make sure that it wasn’t bowel that was pushed down. Fortunately, it wasn’t, just fluid. Fluid that had moved down from his abdomen into his scrotum. Stetson’s IV also went bad and needed to be replaced. The nurses tried to place a line for 3 ½ hours and were unsuccessful. The IV was providing Stetson with the medication intended to break up his bezoar and also provide him with IV nutrition. Stetson was dehydrated and at an increased risk of infection if nurses continued to poke him. In order to give Stetson medication and nutrition he needed IV access. We talked to the nurse about doing a surgery to place a line that would give semi- permanent IV access. She could tell that we were unsure of putting him through surgery and she said, “You don’t have to place a line if you don’t want to. In his case it's completely ethical to not place an IV.” This took me aback because the alternative would be Stetson becoming more dehydrated receiving no nutrition. This seemed out of the question and counterintuitive to our goal of getting him home.  We decided to agree to the surgery and he went to Primary Childrens that night. 

Stetson endured the surgery well. The surgeon placed something called a broviac catheter. However, Stetson’s recovery of the surgery was a bit of a nightmare. Stetson’s nurse had pulled back on his Anderson tube (a tube in his stomach to suction stomach fluids out) and got frank (a.k.a fresh) blood. She informed the doctors and they discovered Stetson’s clotting factors dropped from 400 to 25.  We gave consent for the doctor to give Stetson a transfusion of clotting factors to help him. 

I had received all this information hours after we arrived at the hospital because I once again had to get checked in for high blood pressure, 173/114. Fortunately, the ER doctors worked quickly because they knew I was there to see Stetson. I was frustrated with myself for skipping my blood pressure check on Friday because I got busy getting ready for the weekend. Now it was Sunday and I was wasting precious time with my baby boy because I skipped a doctor’s appointment. Once I was discharged I got updated on all that he was going through. 

Stetson looked pale and sicklier than ever. He was in pain and I knew it. I felt terrible. I questioned whether or not we made the right choice by putting him through the surgery. However, I knew the alternative of not giving him an IV would be halting Stetson’s medications and nutrition and that would eventually lead to his passing. Of course I was going to give my baby the medication and nutrition he needed and surgery was the only way. However, looking at my pale sick baby I wondered if we made the right decision.   

Later that evening while we were taking the trek back home, the hospital called, it was Stetson’s neonatologist. I could barely hear her over the road noise but what I understood was Stetson was struggling to breath. Immediately I got emotional and worried that the surgery would be the reason for his demise. When she learned that we had yet to pass the hospital she asked us to come in. We told her we still had Georgi with us and she gave permission to bring her to the NICU with us. Once we got off the phone I told Levi we needed to say a prayer. I prayed that Stetson would be able to breathe better, to make it home so he didn’t have to pass alone in the hospital. After the prayer I felt anxious still, I knew exactly why she wanted us to come in. The doctor would talk to us about resuscitating and if that is something we would want to pursue. 

We were directed to a small room with no windows. Georgi was asleep in Levi’s arms. As we waited Levi looked at me and said, “I want you to know no matter what we made the right decision.” I didn’t say anything just nodded. 

We were waiting for quite some time and I worried that maybe Stetson was still struggling to breathe and she was working on him. I had Levi go check on him while I waited with Georgi. After a few minutes he came back and told me that Stetson was fine but he was back on highflow. 

The doctor finally came in and apologized for the wait (she had a new patient admission). She explained to us that Stetson was struggling to breathe so she had to “bag” him a couple of times to give him breathes. She said that she wasn’t positive that she would need to do anything more but just in case she wanted to know what our plan was and what procedures we are okay with perusing. She also mentioned that she believed he is stable enough on the highflow that there wasn't a need for us to stay in Salt Lake. We debated for a while on what to do. I worried that if Stetson passed, resuscitation would do more harm than good. The doctor clarified that Stetson was still breathing and she could put a breathing tube in before he flat lined. I then asked her if that meant he would suffocate once it was removed. She explained that there was a possibility of him breathing fine once the tube was removed. She also explained that if he didn’t breathe again he wouldn’t suffocate like we imagine. She said he would be given pain and anxiety management to keep him comfortable and once his O2 hit a certain threshold the body gets relaxed and feels calm and goes in a comatose like state and he would be really comfortable. After some discussion we agreed to allow for a breathing tube to be placed if he turned for the worse. That way we could come back and say good-bye to him.               

Stetson’s little body was struggling. I couldn’t tell how severe his condition truly was. Doctors and nurses are very talented at providing you with information as if they are talking about the lovely weather. I decided this is a good thing. Throughout my experience in the hospital and in the NICU it's better to have news delivered calmly and in a relaxed manner. However, sometimes this makes it difficult to understand the urgency or magnitude of the situation. It wasn’t until the evening of Tuesday march 16th that I truly understood this.                     

Tuesday evening we had a meeting with a Nurse Practitioner from Rainbow Kids to talk about our plan and goals for Stetson. Levi and I had struggled to know how to move forward with Stetson’s care. We shared with her our goals to have him home, get family pictures, baby wear him, bathe him, watch sports with him, have him meet family. As we talked with the Nurse I finally understood the magnitude of Stetson’s medical condition. She clearly explained what was happening to Stetson’s body. Stetson’s bezoar developed because his GI tract has very low motility, meaning that his body is unable to move food through his digestive track quickly causing it to sit and age in his stomach, forming this rock-like mass. Although the medication was breaking up this mass because of this low motility he would get another mass, meaning the blockage isn’t the root of the problem but his GI tract is. Essentially his GI tract was dying and not able to do its job. Stetson won't be able to physically eat again because his body can’t digest it and it would just sit in his stomach building pressure and causing pain. After hearing this I realized that Stetson was on life support that nothing could be done to fix his ability to eat. I told the nurse “I never really realized he was on life support.” She nodded and said, “all we are doing now is just buying him time.” I became very emotional and told her that the two things I wanted to avoid were having my baby suffocate and or starve to death. The thought of Stetson not being able to eat devastated me. I truly thought Stetson’s blockage would resolve and we could start feeds again. That wasn’t the case. I felt so hopeless and guilty. The thought of pulling back care for Stetson to let him die is completely unnatural, how could I as a mother stop care? I voiced this to the nurse and she said, “You won't be stopping care, you're changing his care.” 

A million thoughts went through my head. I still couldn’t believe that my baby couldn’t eat. He never would be able to again. We were told 6-8 months and already time was fleeting. He was almost a month old and I doubted I’d get more time. At that moment I knew I would stop pumping. I applaud women who are able to pump and donate their milk, it’s life saving. But I couldn’t, I can’t, already I was drained and I wasn’t going to spend time in the hospital pumping instead of holding my dying baby. 

I wondered how he would die? What choices would Levi and I need to make? And could we make them? I told the nurse that I felt like I was choosing how my baby would die. She responded, “ You’re making choices to help him go peacefully.” Again I told her how I didn’t want him to suffocate or starve to death. How, can I withhold food from my baby? Even, if it is in the form of IV nutrition. I imagined him crying and uncomfortable, rooting, desperately searching for relief and receiving none. I told her “ I don’t want him to die crying.” I imagined him feeling panic and scared. Suddenly, Stetson’s demise became more real and devastatingly sooner than expected. Anyway he left this earth felt terrible and tragic and not peaceful. I understood his body was failing him and it all felt painful. 

The nurse explained that withdrawing respiratory support or IV nutrition are actually peaceful ways of dying. She said we know this from interviewing people that are close to death or who have had near death experiences. She also explained the physical changes the body goes through as it’s dying. In terms of respiratory support withdrawal she described something similar as the neonatologist when we were debating about what intervention we would pursue the night he was struggling to breath. She explained that the body does something similar in terms of nutrition. His sugars would depilate and he would become very sleepy and in a comatose state. Again she stressed how we would manage pain through medications to make him as comfortable as we can. I asked her if he would feel hungry and she responded, “it's very unlikely. Think about when you have a tummy ache you don’t want to eat.” She was reassuring me that if withdrawing on Stetson’s IV nutrition was something we were going to do that it wouldn’t be scary or painful. Stetson has a lot of pressure build up from his swollen abdomen and the lack of motility in his GI tract would cause a buildup of pressure if he were to have food in his belly. His Anderson tube helps relieve the pressure in his stomach by draining all the gastric juices that he produces which typically help break down food and pass through the GI tract. Stetson’s digestive system is dying and the build up of stomach bile would cause discomfort and lead to him throwing up, risking aspiration. In essence Stetson’s GI tract is failing rapidly and forcing food or nutrition would cause stress on his system to work when it doesn’t want to.

The rest of the conversation was figuring out how to get Stetson home if he could leave the hospital. If he couldn’t, what would the alternative goal be. We discussed at length our options. Our ultimate goal being Stetson coming home. Stetson’s scrotum is so swollen he couldn’t travel in a car seat making his only way to safely travel being ambulance transport. If that wasn’t attainable we discussed finding an airbnb that we could stay at until he was off life support. If neither of those options would work we would stay at the hospital and hopefully get permission for some family to be with us as we took him off his supports. 

After the phone call ended I still felt terrible. I understood what the nurse was telling me about withdrawing respiratory support and IV nutrition being peaceful but I struggled to believe her. I can’t imagine either of those being peaceful and I realized that any possible way for Stetson to leave this earth seemed painful and scary.

As the days went on I worried Stetson would get worse and if that happened his passing would be less comfortable and more traumatizing. I told Levi I felt like I was killing him and that I’m the reason he would go. I tried telling myself that it’s not my fault. His body doesn’t work as it should and I can’t do anything about it. However, no matter how much I told myself this I’m not convinced. 

I feel guilty and selfish no matter what path we choose. To limit his life support in a matter of a week or two, or to drag it on to hopefully get more time with him. Then there was the possibility that he could pass no matter what medical support we give him. Causing him to pass hooked up to machines and I would miss the chance to get pictures with him without tubes and lines taped to his face. I’d miss the opportunity to baby wear him, to dress him, to bath him. All the little things mothers typically get to do I’d miss out on if he passed being attached to medical machines instead of being off of them. I didn’t know what was right and I stressed feeling like I had to have a timeline in my head before he came home. Levi told me we could take it a day at a time that we didn’t need to set anything in stone. However, I was still stressed and I worried about what his condition would turn into if we waited to take him off supports. No matter what direction we choose I feel terrible, guilty and selfish. How could I possibly be faced with the choices that were ahead of me? My reality is a nightmare and I never could imagine I would face such difficult trials.

Sometime passed and it was decided that Stetson would arrive home by ambulance on Friday. We called our family and told them that if they wanted to see Stetson the nurse suggested no later than Sunday (just in case).

We scrambled to get things ready for him. Sanitizing the apartment. Setting up the nursery. I desperately wanted Stetson in our room with me but his equipment is too large to fit in our room. However, I enjoyed decorating his room with a rug and bookshelf. Hanging a special quilt on the wall just for him. 

Friends and family came to help us prepare for Stetson. People provided meals, helped clean, set up furniture, etc. Throughout our trial people around us have carried us and for that I’m grateful. Although my little boy is leaving this earth he has already impacted my life in a capacity I never could have imagined. Already people love him and know of him. Most have never actually met him and many may never get the chance to see him or hold him. But I know that he will be remembered and I know that although his time on earth is short his memory will live on, not by family and I alone, but by thousands. Saying he is one in a million is a gross understatement; he is one in billions. His little life has a great purpose and I’m sure when he leaves this earth, he is being called to an even greater one.

 

“Stetson’s Homecoming” Coming Soon…