Rainbows come and go. They are often a glimpse of the light at the end of the tunnel before another storm hits. It was a brief reprieve until we experienced yet another nightmare.
Reactions to food allergies span from an aggravating itch to life-threatening anaphylaxis. One’s experience can lay the foundation for a healthy fear that supports safety. This fear can also morph into an unhealthy version which resembles a phobia. Young minds and bodies learn how to cope the best that they can with with fear. In our family’s case the solution was to drink water. If the water goes down, so does the air. Although, we don’t feel safe, we are safe. This was sweet Ellie Rose’s strategy a few weeks ago. Pair this strategy with a poor appetite from an upper respiratory bug and you get dangerously low electrolytes.
Ellie’s hyponatremia led to a seizure. Unlike most seizures, she didn’t wake up. She went blue and laid still. I couldn’t find a pulse and proceeded with chest compressions. The emergency team arrived swiftly and after a quick debrief, we were on our way. We rushed to the hospital, where we awaited her awakening. She had moments of aggravation and calm. They decided to sedate her to complete tests. The full MRI, EEG and EKG all came back normal. They proceeded to do a spinal tap, to investigate her cerebral spinal fluid. After the lumbar puncture, they decided to extubate. After the sedative wore off, she woke.
I share the happy ending first before describing the torment because those 18 hours were the scariest that I’ve ever lived. I relived the scary unknown of our NICU days and hung on that hope. The thought of losing my little girl now- to something so preventable- was heartbreaking. The mom guilt was insurmountable. Sleep, food, anything else except for our living breathing family meant nothing. Thoughts raced, questions were proposed, and my hands still felt tied. I couldn’t help but think about what life would be like if she didn’t wake up, or if she woke up different. I knew either way she would be loved all the same and that we would make it through. I believe this because love never fails.
I stood next to her and held her cold hand waiting for it to squeeze back. In those still moments, I rubbed her legs thinking of all the cartwheels. Praying for her gymnast dreams. I thought about all the other children and their parents, who gazed at their children with perhaps less fortunate circumstances. My heart broke for them and still does. I sat in gratitude for my education in healthcare and comfort in the hospital setting and felt compassion for those that may not feel that same way.
She extubated easy and with a few coughs was breathing on our own. We then waited for her to wake up from her slumber, unsure of what awaited. About 2 hours later, she stretched and opened her eyes. Her first words, “Aren’t I supposed to be at the dentist?” At that moment all fear vanished, and joy was insurmountable. We knew our Ellie Rose was back. She was right! Her siblings were at the dentist. We didn’t care at that moment what the road ahead meant, are Elliott was awake.
Her mind was clear, but her body was aching. The lumbar puncture was painful and led to hyperemesis. Although we were discharged, we returned quickly when she couldn’t eat or keep food down. They assured us that her electrolytes were stable, and she needed to wait these symptoms out. We remained in the hospital until her nausea subsided enough to go home safely.
Elliott Rose Vanderwall is a force to be reckoned with. She is determined, hopeful and gracious. However, she is not patient. The next days were aggravating as all she wanted to do was return to the trampoline. After a quick week, she is back to her moving, shaking and flipping self.
It took me awhile to find the courage to dig deep and share. In these moments, I find writing healing. I write and share because I hope others find comfort in these words knowing that someone else has walked a similar path. To them I pray for patience, hope, and perseverance.
Today, we still live in the most chaotic home that I know. But it feels different. I feel different. I was challenged with the longest 18 hours of my life and was rewarded with perspective. I pray that it is not fleeting but lasts. Being quick to anger is easy but slowing down to listen is hard. I not only come away from the situation with gratitude but with a readiness and listen more and for longer. To pay closer attention to what’s going on in the shots of our little one, when a tantrum erupts and when coping strategies don’t seem quite right.
I also want to use this space to say thank you for all who waited with us and joined us in prayer. Ellie also felt very loved and cared for during this time. You were our light after this storm!