"Get a good night's sleep....it'll be better in the morning."
A phrase often said after a hard day or when facing a difficult situation. There is more truth to that saying than I first realized. Did you know that it is during REM sleep that our minds consolidate our memories and process information. Research has shown that when faced with a problem, allowing time for it to "incubate" and getting a good night's sleep actually helps people cope and find better solutions.
I have talked a lot about how sleep deprivation was one of our greatest struggles when caring for Ellie. The irony is that Ellie was actually an amazing sleeper, we just had to be awake to care for her while she slept. When she was a newborn she couldn't sleep laying down or her airway would flop closed and she couldn't breathe. My mom and I took turns watching her through the night while she slept elevated in her swing and would reposition her as needed to keep her airway open. After she came home with her trach we would swaddle her up, connect her to all her machines, and then take shifts staying awake monitoring the equipment, responding to alarms, suctioning as needed, and making sure Ellie didn't wake up and need something since she had no audible voice. As she got bigger and stronger and we became more comfortable with her care we were able to try and get some sleep. At first we slept on a mat in her room, but gradually over the months I became sensitive enough to her sounds that I could sleep around the corner in my bed with the video monitor on full blast. Scott slept too deep to wake up to the monitor so I pretty much took over her nighttime care asking Scott for help when I needed it. It was about this time that I hit rock bottom. After 6 months of no more than an hour or two of sleep at a time I felt on the brink of a nervous breakdown. I was sooo exhausted, yet I had developed a fear of sleeping. I was filled with anxiety whenever I had a chance to lay down and close my eyes because I was so tired yet I was terrified to fall asleep and miss something that Ellie needed. I would fall asleep only to jolt awake a short time later with my heart racing not knowing how long I had been asleep and panicking if Ellie was okay. With encouragement from Scott and my mom I went to the doctor to talk about my increasing anxiety. After talking about our current situation he told me that with the amount of sleep I was (or wasn't) getting anxiety and depression were inevitable. He prescribed me more sleep - easier said than done. So I tried to let Scott and my mom help out more by taking shifts sleeping in Ellie's room while I tried to sleep in our room with the monitor off. I would still wake up to every alarm I heard but it did help me get some sanity back. As time went on our nights seemed to get easier. We had more nights when I only had to get up every 3 hours to refill her feeds and check all her equipment before returning to bed and less alarms going off between those times. I started to think we might actually be able to do this after all. After her first birthday and our move to Omaha, Ellie had a surge in development that we were so excited about, but wreaked havoc on her sleeping routine. We quickly learned that trach masks, feeding tubes, and rolling babies don't go together very well. Ellie made a sport of chasing the light of her sat monitor until she managed to pull off her sock and the underlying probe; disassembling her trach mask tubing and thereby disconnecting her oxygen; opening the medicine port or altogether disconnecting her feeding tube - subsequently "feeding the bed", as the tubie community calls it, and emptying the contents of her stomach all over herself. Any stretch of sleep we did get usually resulted in walking in her room to find a scene such as this.
One, sometimes two, middle of the night baths and complete bedding change outs became the usual as we tried to find ways to "Ellie proof" all her equipment. In the mean time Ellie started developing some less than ideal sleeping patterns as she discovered that it was super fun to wake up and play from 3-5 every morning. We were in Omaha without the help of my mom and Scott had such a demanding work schedule that I was once again left running on fumes. But at last there was help on the way! On August 1, Ellie was officially enrolled in Nebraska's Katie Beckett program and with that we qualified for night time nursing hours. We could have a nurse come for 8 hours every night to care for Ellie while we slept! This is exactly what we had prayed for and dreamed about for the last year! But when it finally became reality we realized what it actually meant. We would be inviting a virtual stranger into our home each night while we slept and trust them to care for our daughter. It was actually pretty nerve wracking and if there had been any other way I probably would have chosen it, but as it was, I knew things could not keep going like they had been. So we met with the nursing agency to discuss our needs. We decided to start by only having a nurse come 4 nights a week and we would see how it went. They said they had the perfect nurse to meet our needs and the next day we met our nurse, Danai. She was so kind and I immediately felt comfortable with her and once again was so grateful for the blessings that were being poored out on us to receive a nurse that was such a great fit. Danai worked her first week of shifts with us where we were orienting her to Ellie's care and nighttime routine. Before she could start her second week with us Ellie was hospitalized and died. Once again, it feels like a cruel joke. Like we belonged in a line of Alanis Morriset's song Ironic. We moved 1000 miles across the country to obtain the nursing help we needed just to have Ellie die the week after our nurse began.
Looking back, I often wonder if I had been able to get more sleep if I might have dealt with the emotional aspects of Ellie's diagnosis and care better. I also wonder if I wouldn't have been so sleep deprived during Ellie's last hospital stay if I might have had a clearer head and not missed the subtle clues that I should have noticed. Would I have been able to piece together the puzzle of what was going on inside Ellie's body before it was too late? If I hadn't been totally and completely desperate for sleep on August 30, 2014, I would have responded to Scott's call about Ellie crying by going to the hospital to see what was going on instead of telling Scott I needed him and the nurse to take care of it because I was too exhausted and didn't know what to do. I will never be able to forgive myself for that.
It was so discouraging and overwhelming not to be able to find a way to get help with Ellie during the nights that first year. I would pour my heart out in prayer begging for a solution only to face another sleepless night with no respite in sight. I felt so alone and didn't know how I was supposed to maintain that level of care throughout Ellie's life. Little did I know that her life would not be as long as I expected. After Ellie's death, all the feelings of confusion and anger at why we couldn't get help with Ellie turned into immense gratitude that I had been the one to care for Ellie throughout her life. That she had been such a central part of our life for the short time we had her. I was so grateful for all the nights I spent with her - that practically doubled the time I got with her on earth. I finally understood that while I was begging Heavenly Father for what I thought I needed, he could see the whole picture and knew I could survive 15 months with little sleep and instead gave me the gift of time and memories with my baby.
If I thought nights were hard with Ellie I had no idea how hard they would be without her. After Ellie's death nighttime became my worst enemy. The sound of her noisy machines running had always been in the background and now the silence of the night was suffocating. I would lay down in bed only to shoot up gasping for air as the weight of guilt, regret, disbelief, and grief crushed me. For the next few months I had to take a sleeping pill each night before bed just to make it through the night without having panic attack after panic attack. Miles started coming into our room almost every night and climbing in bed with me. I was so grateful that someone needed me and I so desperately needed him to hold in my arms. One night Scott had to travel for work which left me home alone with the kids and unwilling to take my sleeping pill for fear I would be too groggy if someone needed me. I was terrified to face the night alone. One by one the kids all trickled into my bedroom throughout the night and climbed in bed with me. Never has this happened before or since. It was as if they knew I needed them and they all were there. I took this picture at 3 am and sent it to Scott saying, "I guess there was no need for me to worry about spending the night alone."
It's a year later and I still dislike nighttime. Often times when I am having a hard time sleeping I will run a load of laundry just so the quiet humming of the machines can break up the silence. Every single time I flip on the light switch in the hall I can't help but think about all the times I did that as I went back and forth between Ellie's room at night. I still wake up and instinctively look at the night stand to check the video monitor. I have put my favorite picture of Ellie looking up from her crib in its place so I can feel a little closer to her when that happens.
As I have been trying to figure out my purpose in this new life I came across this quote by President Gordon B. Hinckley
It was just the message I needed to take a step I had been contemplating and go back to work as an RN doing Pediatric Home Nursing. Last month I started a job for Maxim Healthcare, the same nursing company that we worked with for Ellie's nursing hours. I will be providing care for two families with trached kiddos. One of them is my dear friend Lorena and her daughter Alex. The other is a family out in Freemont who currently does not have any nurses because their son is such a high acuity they require experienced RNs which there are not a whole lot of in this field. Being surrounded by the same equipment and providing the same cares as I did with Ellie brings with it a definite ache in my heart, but overall it has been very cathartic for me. I feel a great sense of purpose in providing these families with the relief I know they need. If they can get even just one night of sleep knowing their child is taken care of than it is worth it to me.
