I gave birth to the most amazing little girl. She was born beautiful and healthy. We went home happy and healthy, but just 3 short days later we were readmitted with extreme levels of jaundice. I struggled with it a little, mainly because it wasn't easy as a first-time mom to see my baby girl under lights. But ultimately I knew she would be ok. I was stressed then, but little did I know that was nothing! My sweet girl, J, wasn't eating well and I was told it was due to jaundice. The levels came down from 19.9 (which is what we were admitted with) to 4.2. My sweet baby girl still wasn't eating for me. I was beyond heartbroken! It was so important to me to be able to breastfeed. Except it was worse than that - J was no longer just refusing my breast, she wouldn't take a bottle either. It was 120% terrifying. We also tried to give her my breast milk by a syringe, but she only spit that out. I was frustrated, scared, exhausted, and hopeful that my baby girl would get better and very soon.
After about 2 or 3 attempts at feeding, my little princess still wasn't getting full feedings of 60 ccs. My doctor started to talk to me about putting her on a feeding tube. My doctor was kind and gentle about it; he almost asked my permission. My heart shattered, but we put the feeding tube in. As much as I hated the idea of it, I knew my angel needed the nutrients of my milk. As hard of a pill as all of that was to swallow, I found deep comfort in knowing that she was at least getting my breast milk. For the first few days I was still offering my breast to J; if she didn't take it within 5 minutes I would offer her a bottle. If she wouldn't take that, we would gavage my milk through her tube. My nurses and I would take turns trying to get her to eat. Sometimes she would take it all via bottle, sometimes she had zero interest! Sometimes she would only take half of the 2 mL she needed. I began to settle into the idea of a feeding tube because she was ultimately getting what she needed.
A week later, I finally decided my nurses were going to evict me if I didn't take a shower. It was only my 2nd shower since I had given birth and J was stable, so I decided it was ok to take a lengthy shower. I shared my thoughts with my nurse and she was happy to accommodate. She told me she didn't have time to sit in the room with J the entire time I was in the shower, so she was going to hook her up to a heart monitor and pulse oximeter. No big deal, right? This is when we discovered a much bigger struggle. You see, in the 30 minutes I was in the shower, my nurse learned that J was de-saturating into the low 80s. My baby girl was struggling to breathe and we had no idea for how long. They put us on low-flow oxygen from the wall. I was beyond terrified. I was assured that she was on the lowest setting possible, and would work on finding out why this was happening.
The low-flow oxygen worked for about 10 hours. In that time, she went from the lowest setting to the highest, and that still wasn't enough. I can't even begin to remember all of the tests that were done to determine what was going on, but about this time I was also informed that J tested positive for Adenovirus. When I asked what this was, I was told that it was basically the common cold. And they were going to do everything they possibly could to manage her new condition.
We were now in isolation. At the time it felt so stupid to make my nurses put a gown and mask on in order to come in the room, all for a silly cold. When the highest level of the low-flow oxygen wasn't enough, they moved us out of the tiny corner room into a slightly larger room just three doors down. The reason for this was that J was officially on high-flow oxygen. She was on 2L/40%; I was told that was the most she could be on before being moved to the PICU. To start off in the new room we were on 2L/40%; within a few hours we moved down to 30% and we stayed between 30-35%.
In this timeframe, all kinds of testing was being done. Some were easier to swallow than others. They did an EEG to check for seizures because one of the nurses thought they saw a twitch of her mouth. They did a spinal tap and blood culture test as well. Both ended up coming back as normal. The EEG was also normal. I will never forget the spinal tap. They had my baby tightly curled in a fetal position while they struggled to pull fluid from her spine. They promised me she was in no pain and very numbed up. She squirmed and squeezed my finger as I sat at the edge of the procedure table crying and praying for her to be ok. All I wanted was for J to let out a blood-curdling cry. And nothing. She laid there and took it and she squeezed her mama's finger for comfort. At that moment she had to have known I was there with her, for her.
J also had an IV put in her left arm at the same time. In the next few days, I found great comfort in holding her constantly. The Pediatric specialist found it best to not attempt to feed her anymore. We were only giving her nutrients by tube now. J was rarely out of my arms at this point. Her stats were better when she was with me vs. when she was in her crib. I know that sounds crazy, but more than one of my nurses noticed in and commented on it.
As J progressed, we took multiple chest x-rays. They looked smoky or cloudy. It was questioned as to if she was aspirating her food. So they made the choice to stop feeding her milk altogether. They were going to feed her nutrients through that IV line. My heart hurt. I so deeply wanted to be able to feed her like every other baby
Originally, I was told that 2L/40% was the highest level of oxygen we could be on before we were moved to the PICU. By this time, J was on 2L/60%, where she stayed for about an hour. Very suddenly we were being moved to the PICU. We were not even there a total of 24 hours. They placed an arterial line in her right hip. Not long after this, they started to tell us that they were running out of options and we need more help than they could give us. This is when we discovered we would be HELP-Flighted to Denver. We left town within a few hours of knowing. Our St. V's doctor did one more thing before we left. He put a breathing tube in. I felt so powerless. I wished it was me instead. I still do. Nonetheless, I couldn't change it.
They placed the tube just before we left. I was told that once she had the tube in, I couldn't hold her again. I held my baby for the last time until the night that she died. I wish that I would have known it was the last time before the night that she died; I would have held her longer. But my mind was focused on getting her better.
Once the tube was in, we left pretty quickly. I remember the hall being full of a going-away parade for J and I. In the hall stood our friends and family, but it didn't stop there. Nurses that we had all week were there, L&D nurses came to say goodbye. It was amazing.
This is really where our story ends for Billings. I did skip many details. I want to tell you how each nurse impacted us, but first I felt it was necessary to understand our story in order to understand the level of gratitude I have for so many of these women.
After telling people our story, they ask me how I got through it and what I'm doing. I tell people I had 3 kinds of nurses: some average ones, some really wonderful ones, and then some life-changing ones. Melissa doesn't just fall into the life-changing category; she full-blown leaped into it. One of the most painful things I had to do with J was watching her get a spinal tap. J struggled with it and I think I struggled even more. They needed to place an IV after that and I told them I couldn't stay for that and that I had taken all I could for the moment. I left the procedure room and looked at Melissa. In a firm but sobbing voice, I said, "Leave her head alone." She said, "Ok I'll try. If I have to touch her head I'll come to get you."
Melissa was the only person I ever left my baby with. It didn't matter that it was only for 5 minutes, it was the trust that I had for her that allowed me to give her 5 minutes alone with my baby. Melissa is the best nurse I have ever met. But what made me give her so much trust? Melissa held, touched, looked at, and handled my baby girl just like I did. She did everything with my baby with genuine love. And there were plenty of nurses who handled my J with care, but Melissa treated her like she was her own baby. Not only did Melissa take incredible care of my baby, but she also took incredible care of me, too. I had mastitis, and Melissa even massaged my boobs to relieve my swollen, clogged, and very tender breasts.
Melissa felt like family because she treated my baby and I that way. When J and I were leaving for Denver, I truly had the thought of, "Can I take her with me?" Melissa made me feel like I could have disappeared and she would have been the exact same advocate for J that I was. Not even my family had that level of trust from me.
I decided about a week after J passed that I was going back to school to be a nurse. Let me explain the significance of that: I hate math, science, and blood. So why would I do that? Remember how I said Melissa was life-changing? I meant it. Nothing can ever bring J back or make any of this any better. But I feel like J passing has to be the start of something good and not just her death. And I considered all of my options. I truly believe that I can help even one other mommy the way that Melissa helped me, that it might make all of this a little better. Not ever ok, but a little better. My baby girl would want me to help other babies and mommies that are in our position. I don't think I would ever have gone down this road without the genuine love of Melissa Cunningham. She is truly inspirational and has forever changed my life. My family will never be able to thank her enough.