A Losing Battle

Being in the hospital was stressful, humiliating, and painful. Giving birth is not the most glamorous thing in the world and C-section recovery brings a whole new level to postpartum recovery. I do not recommend C-section for anyone! Not only was surgery horrifying but also, recovery is painful! My shoulders hurt the most. Apparently surgery can trap gas in your body causing extreme pain (in my case shoulder pain). Also due to a C-section I have to get shots in the stomach for approximately two weeks after to prevent blood clots. Being on a cocktail of painkillers plus 24hrs on magnesium made me feel hot, tired, and in a haze. The first night after surgery the nurses come in every hour to check vitals, which leads to very little sleep. On top of all that recovery entails, my prize, my baby, wasn’t even able to be with me. 

I wanted to be with him every second. Unfortunately, recovery made that impossible. I often was too tired to be in the NICU for too long. The morning after surgery I was still on magnesium plus the pain pills. I just barely made it to Stetson’s bedside before I felt like I needed to go back to my room; I felt hot and dizzy and could barely stay awake. I was getting so upset because I had just got to my baby and could barely be with him. Stetson’s nurse asked me if I was alright and I almost started crying because I was getting so hot it was making me sick and I just wanted to be near my baby. His nurse quickly rushed off to grab me a cold washcloth with ice. I dabbed my face and laid the washcloth over my neck, finally some relief. I appreciated that small gesture so much because I was able to feel comfortable enough to stay at Stetson’s bedside for a while. This time he was swaddled tight in a rainbow blanket. All swaddled up he looked like a typical baby. 

As the days in the hospital went on Levi and I had moments of hope and distress. At times we felt like Stetson was going to get better while other times we feared the worse. The doctors ran what seemed to be a thousand labs, ultrasounds, cultures, x-rays, etc. Stetson was a mystery, everything seemed to come back normal but he still was swollen. I was just hoping the doctors would find a cause that would have a clear-cut treatment and we would be able to take our baby home healthy and strong. However, a nurse told us the best-case scenario is the swelling goes down on its own and we never discover the cause. We were told from the beginning that 9/10 the doctors never discover a cause. They hoped Stetson’s body would figure out how to absorb the fluid and he would be able to pee the fluid out with time. 

I prayed Stetson would get better. It was killing me seeing my baby lying in a hospital with monitors all around him. I hated that I had to ask permission to pick up my own baby and that he couldn’t be in my room with me. I wasn’t able to nurse him and ended up pumping to provide him with milk. I hate pumping! Waking up to an alarm in the middle of the night is far more difficult than waking up to your baby, who you can calm and snuggle with, making it so worth those early morning feedings. I envied other parents in the NICU with babies that were just early. They had a clear-cut treatment plan and a clear path to success to leaving the NICU. Yet, I was here with my beautiful swollen little boy with no knowledge of when his journey would end or if he would even get better. 

The hospital stay was difficult. I was thankful I was able to see my baby frequently but upset that the pain medication made me so tired. I couldn’t stay awake for too long and this limited my time with Stetson. I was ready to leave the hospital but terribly sad that my baby wouldn’t be coming with me. How long he would stay in the NICU I had no idea but, I worried it would be a long time. I was concerned about the effect it would have on Georgi and our family. I also worried that he would seem to get better and then be taken from this earth anyway. I prayed he would get better. I begged God to heal him and if He wouldn’t, if he would take him early and not tease me with false hope. 

Levi gave Stetson a blessing immediately after his birth as well as right before we left the hospital for discharge. We left the hospital feeling anxious and worried. I was so concerned about Stetson and not getting to just walk up to the NICU to see him. While in the hospital I would pump in the early morning and instead of having the nurse take him his milk I would walk it to the NICU myself and bring it to him.  The first time I did I actually got lost. I’m sure I looked like a crazy lady who escaped from the psych ward. I was wandering the halls in socks and a hospital gown at 3:00am pushing an empty wheelchair. A man actually wheeled me back to my room. Fortunately I got Stetson his milk before getting lost. 

Before we left the hospital we got approval to live in the Ronald McDonald house. However, we decided that it wasn’t the best fit for our family. Due to Covid, there are lots of restrictions that would limit people who could come and help with Georgi as well as twice weekly Covid testing.  Levi wouldn’t be able to stay with us during the week if we had someone stay and help with Georgi. Also we are confined to our room unless at the hospital or out in the community. We knew this would be too hard on Georgi, she was away from home for approximately 5 weeks and hadn’t adapted. Her lack of sleep was difficult on all of us and I couldn't imagine what a difficult transition it would be on her being stuck in essentially a hotel room. Also, she couldn’t come with me to the NICU and I didn’t know who could stay at Ronald McDonald house for an extended period. Meaning I would need to take her to someone every day. This didn’t seem to solve anything for us. I also wanted to be home back in my own space and I really needed my daughter to sleep. We decided to go home and find childcare for Georgi and I would drive down to the hospital everyday to see Stetson. Weekends we would stay with family that were closer to the hospital. We were grateful for the mile exception Ronald McDonald House made for our family. We didn’t want to kick a gift horse in the mouth but we knew that Georgi needed to be home. I needed to be home. I needed to be back in my own space and have my daughter finally sleep. I was desperate to have her near me and to pay back her sleep debt. 

Being home was a lot better for our family. The three hour round trip to the hospital every day was difficult but worth it to see my beautiful baby boy. Georgi was also finally sleeping. After discharge my mother and mother-in-law stayed with us. They actually unpacked my house and organized it so I could focus on Stetson. It was also nice to have Georgi watched by both grandmas at once. Even though I missed time with Georgi it was good for her to be in her own home and her own bed. 

I kissed Georgi goodbye every morning and made the trip to see Stetson. I held him as long as I could. I’d spend approximately 2 hours with him. While family was watching Georgi I took advantage and spent more time with Stetson. Rather than feeling the need to rush home to relieve the babysitter. Everyday was special. I took pictures and videos to send to Levi while he was at work. We just waited and hoped our baby would get better. That the doctors and geneticist would be able to heal him. 

Levi and I decided to participate in a research study. This study would hopefully find answers to Stetson’s condition or hopefully lead to research that would benefit children like him. We were told that we had about a 20% chance that the study would give us any answers but we decided it would be worth it for future children and hopefully help progress medical treatment. The research team took blood from Levi, Stetson, and me. I didn’t really believe anything would be found from this study and I thought that research studies take years and turn up small findings. I figured I wouldn’t hear many updates about the study for years to come.  Part of me still wishes that were the case.

It was a Friday, 13 Days of Stetson being in the NICU. Levi and I had a meeting with our care team, which consisted of our neonatologist, genetic research team, and Rainbow Kids (an organization that does palliative care). When we got to the hospital I had no idea what was coming. I thought we were just going to talk about Stetson's medical goals and care under the same assumption that no labs or results have turned up any new information. I assumed Stetson was still a mystery. We met the Nurse at Stetson’s bedside, she introduced herself as Ashley; she would walk us to the meeting. She said, “I’m going to warn you that we are going to talk about some really hard things.” As soon as she said that my heart leaped into my throat and I got teary eyed. The nurse gave us a minute before we walked to meet the rest of the team. We drew the curtain that surrounded Stetson’s bed to give us some privacy. I cupped Stetson’s hand in between both of mine. I told Levi we should say a prayer. He asked me to say it but I told him I couldn’t. He insisted and I eventually choked a little prayer out. I regained my composure and we walked hand in hand to the room where the team was. 

The room had the chairs/benches arranged in a misshapen circle. Levi and I sat together on a bench. There were nine faces staring back at us. Two neonatologists that have been caring for Stetson, Four genetic doctors from the research team, two social workers from Rainbow Kids, and nurse Ashley.  Dr. M from genetics talked first. Again she warned us that we were going to talk about some hard things. She as well as the rest of the care team introduced themselves before she continued though I don’t really remember any of their names. They all looked at us with pity and Dr. M asked if she could get us something to write with and take notes. I pulled my small gray journal out of my purse and handed it to Levi. Ashley said she would write down notes for us as well so we could just listen. Dr. M started by saying, “Stetson is a very special little boy.” It’s funny when people say that I don’t feel proud or honored but I feel anxious and despair. 

Dr. M explained what they were going to reveal to us findings from the research study. They are positive of their findings but are running continued testing to further document confirmation. She directed talking points to two other geneticists in the room. Though what was being explained and what I could comprehend is a bit of a hazy mess. 

The research collected blood samples from Levi, Stetson, and I. What they discovered is that Levi and I both have an abnormality in our “genetic code”. The gene that has this abnormality is the Cathepsun gene, which controls 2 different enzymes. Unfortunately, Levi and I gave Stetson our abnormal gene causing him to develop Galactosialidosis. Galactosialidosis is a lysosmal storage disease, which in layman's terms means that when his cells break down and try to rebuild new cells he can’t. His body tries to break down the cell but can’t do so correctly and his body creates/ rebuilds bad or broken cells. This disease is what they call “life limiting”. Over time Stetson’s organs will start to fail. He’ll lose function of his body and he’ll digress in breathing, swallowing, and so on. This disease is very rare; only 150 cases have been documented. Out of those cases only 32 of those were neonatal. Stetson is literally one in a million.  

The care team explained that this disease is autosomal recessive meaning that we have a 25% of this happening to our other children. They said we don’t need to worry about Georgi that she is healthy but she may want to test herself in the future to know if she is a carrier. However, her chances of finding a significant other with the same recessive gene are rare less than 1%. I suppose Levi and I are also one in a million. 

As this was all being explained to us I only had one concern. How long did Stetson have? Based on the knowledge they have, 6-8months. In 6-8 months I will watch my beautiful baby boy fall apart.    

The team delivered the news as best they could. Often pausing if we had questions. Frequently we didn’t. Some of the Doctors asked some on our behalf. Such as if we needed to worry about Georgi developing it later in life. What our options would be for future family planning, and what goals we may have for Stetson. The whole time I wanted to just fall down and die where I sat. At one point I debated just leaving the room because I didn’t want to hear anymore. I wanted to reach for Levi’s hand but I never did. I didn’t know what to do. It was then I learned that the human heart is made of glass and mine had shattered. 

Stetson’s disease has no cure. We now have to make decisions on what his short life will look like. What we wish to achieve in his care. We said our big concern is if Georgi would be able to meet him. We also wanted to be able to take him home. 

His neonatologist said that our goal would be to move him off a bubble c-pap on to a high flow or nasal cannula so he could go home. His care would also be based on our moral standards and goals, which will likely change as time goes on. They also said we didn’t have to make any decisions right away and that we could take time to digest. They also mentioned several times that we are not alone and would be there to help in whatever capacity they are able.

After the discussion came to a close it was awkward and I just wanted to leave the room. The team left us alone and Levi and I just embraced saying nothing. Finally we decided to leave the room and go spend time with Stetson. 

His nurse Vicky quickly drew our curtain for privacy and asked us if we needed anything. I told her we didn’t need anything. Levi held Stetson first, I wanted him too since I had seen him everyday that week. Levi only gets the weekends and has held him very little. I could be patient. Vicky came by and bent down in front of me and placed her hand over my clasped hands. Her eyes were teary and asked “If you need anything just let me know.” I didn’t say anything just nodded. I’m not sure how long we stayed, we held Stetson as long as we could. When we laid him back in the crib he was fussy and crying. Vicky came over and said she would snuggle him for us and make sure he was settled. We thanked her and left. 

Throughout the evening family had asked for updates. We didn’t know what we were going to do. We texted enough to satisfy their curiosity, something like how much he measured, his level of breathing, etc. Some family asked specifically about our meeting with the care team. I just ignored them.     

The next few days felt strange. I didn’t know what to do. I just felt like any hope I had shattered in moments. I felt physically sick and other times I felt numb. I was so hopeful that I could put Stetson’s funeral arrangement away and never think about them for years or ever again. Now I had to move forward with the funeral plans. I had to once again think about what he would wear, what his head stone would look like, and what would be said about his short life. People often tell me I must be special but I don’t feel special. In fact I feel hated. I feel like God hates me. I know Stetson is special and I don’t know why God needs him so badly but I wished God would just heal him because I need him more.

 The next day Levi and I went to the hospital to see Stetson. As we were walking to the NICU I stopped and broke down crying. Levi embraced me in a big hug. I said, “I wish God took him sooner.” Levi replied, “ No you don’t. It wouldn’t have made it easier. Honey, it wouldn’t have been easier. It still would be hard.” I knew he was right but I just felt like I had been tricked. I really thought he would get better and come home.

I regained my composure and said, “Okay, I’m ready to see him.” The nurse was swaddling him when I noticed he was pushing his eyes open.  “Look his eyes, he’s opening his eyes.” Levi and I were elated; it was the first time our baby stared back at us. Levi exclaimed, “Hi buddy, welcome to the world.” Finally I got to hold my baby and have him look back at me. You don’t know how exciting that moment is until you’re waiting for it. Levi spoke as I held him “see you wouldn’t have wanted to miss this.” He was right. I’m terrified for what I’m going to witness. However, I’m so glad I got to see my little boy. I got to see him smile, cry, yawn, sneeze, and finally look at me. I got to see his beautiful blue eyes and his beautiful blond hair. I got time with him. I don’t know how much longer I have with him but I’m so glad I got to see and hold my perfect little boy that must be a giant in the Lords kingdom. I’m so grateful and so unbelievably depressed at the same time. But Levi is right we should be grateful that our Child is guaranteed a spot in the Celestial Kingdom with our Father in Heaven.

     

 

Summary of Stetson’s days in the NICU

DAY 1 IN NICU

Stetson is stable, breathing bubble c-pap (level 7), given FFP (fresh frozen plasma) to help blood clotting, lines in belly for IV & arterial catheter to draw blood and check pressures, line for nutrition umbilical venous catheter, (no feeding).

DAY 2 IN NICU

Stetson is stable with no change or progress. Doctors Drained 30cc of fluid from Stetsons abdomen and sent it to the lab for testing.

DAY 3 IN NICU

My Blood pressure went on the fritz due to a panic attack and was unable to spend much time with Stetson as doctors had to get my blood pressure under control. Later that evening I got to hold Stetson for the first time.

DAY 4 IN NICU

I got discharged from the hospital. Stetson was Stable with no change.

DAY 5 IN NICU

Stetson is struggling to digest food and is pushing it back up into his feeding tube.

DAY 6 IN NICU

Stetson went to Primary Childrens for upper GI endoscopy to try to find out why he is unable to digest food. The Upper GI came back normal.  

DAY 7 IN INCU

Stetson still can’t digest food. X-Ray revealed fluid in lungs and increased abdominal size 44cm.  Stetson’s got all his belly lines removed and now has a pic-line. We were unable to hold him because he’s struggling to digest food due to belly pressure.  

DAY 8 IN NICU

Doctors drained 80 cc (nearly 3 oz) of fluid from Stetson’s abdomen to test for chylothorax.  

DAY 9 IN NICU

Stetson was moved from NICU room #1 to room #3. The move upset Stetson and he had trouble breathing and he went up on his bubble c-pap to #8. He had his first bath and enjoys his hair getting brushed. Doctors ran a urinalysis for MPS enzyme. He measured 42 cm in abdomen  

DAY 10 IN NICU

Stetson’s abdomen measured 39.5 cm and he kept all his food down.

DAY 11 IN NICU

 Stetson had an Eye exam to check for signs of MPS and to ensure the strawberry spot on his eyelid didn’t go down into the eye. Eye exam was normal.

DAY 12 IN NICU

Stetson had no significant changes and seemed stable.

DAY 13 IN NICU

We received Stetson’s diagnosis.

DAY 14 IN NICU

Stetson opened his eyes for the first time.

Day 15 in NICU

Stetson was moved off of bubble C-pap to high flow. His pic-line was also removed and is able to receive oral medication. He no longer needs morphine for pain management.

DAY 16 IN NICU

I learned how to place a G-tube (feeding tube through the nose) and was able to try breastfeeding. Stetson was fussy and frequently throwing up because of pressure on his stomach making the increased volume of food difficult to digest.

DAY 17 IN NICU

Stetson is breathing on his own. Doctors slowed down feedings and decreased breast milk volume to try to help him digest it better.  

DAY 18 IN NICU

Stetson is struggling to hold down food. He went to Primary Children’s for an NG tube (feeding tube that goes past the stomach to the small intestine) to be placed (they were unsuccessful). Doctors Halted feedings for several hours then re-started them with lower food volume.

DAY 19 IN NICU

Stetson had an audiology screening and learned that Stetson is deaf. Doctors attempted to place another NG tube and were successful. They noticed on X-ray a blockage in the lower intestine. Stetson’s Liver enzymes are slightly elevated.

DAY 20 IN NICU

Doctors will give Stetson a medication to help break down his intestine blockage. For now he is only on IV fluids and his feedings are still halted. Doctors said his blockage is likely due to his condition and will likely happen again.