Three years ago this month, we reached an incredible health milestone for Ellis. She finally underwent the 3rd phase of her heart surgeries. This was the goal to reach, meaning that she would’ve survived the first 2 surgeries and was doing well enough to undergo the 3rd one. She’d finally have normal oxygen saturation and less stressed blood circulation through her lungs and heart.
I’m not saying the above for sympathy or to be dramatic, but it’s honest sharing of fears we had of “oh no, the worst could happen.” When I talk about these fears with few close people, I’m stopped right away saying everything will be ok. Chris can’t even go there and shuts down when I get hysterical about Ellis’ health. It’s hard because others feel uncomfortable hearing this stuff. I end up consoling them and feel silenced again. Can’t be positive all the time even though I try.
I didn’t pay too much attention to what the doctors said about her skin and nails turning pink post-surgery. But there was an immediate difference; her nails turned pink and the bluish tint on her face disappeared. Now, she could cry and we wouldn’t have to freak out like lunatics that she’ll pass out from it.
The recommended time to undergo this procedure was 2-4 years of age, depending on the child, and she was already 4. The only hurdle was her slow weight gain; the goal was 30 pounds. The extra weight would provide some cushion and more energy for her body to help in recovery. Her weight hovered in the mid 20s for over a year, and each weight check at the doctor’s office filled me with anxiety. I dreaded hearing that her weight-to-age percentile suggested “failure to thrive”: her weight didn’t make it on the chart compared to similar aged kids.
Since she was born, I’d panic at the small gurgling sound coming from the bassinet or car seat. The first few times caught me off guard, but this became a regular occurrence for our family. Throw ups were a way of life that interrupted whatever we were doing; this happened often during mealtimes, and I was surprised at how we were able to clean it up and go right back to eating. This became our norm. I could even drive with my left hand with my right arm to reach back to comfort or hold the bag.
Back in the day before Elliot could talk and Ellis was just months old, Elliot became my unofficial helper. When he’d hear the familiar throw up sounds, he’d run to me pointing to the baby that something was wrong.
On seeing my panicked face, his little legs would run to fetch me a barf towel for his sister. Through the years, Elliot’s been a good sport about this even though I can sense more of his frustration. When he was younger, he overlooked it and wondered why she was always doing this; more prone to help. But after many incidents of accidentally touching it, or walking over it with his bare feet (like he did recently), he’s less patient about it.
The other night I started swiping through old photos on my phone, going all the way back to 2017. Remembering how the surgery was postponed 2 times, 2 vacations cancelled the night before the trip due to Ellis’ sickness, and latent fear of the future, I cried again. It’s weird how I tell myself that I’m done crying, but I can’t help it. Even though there were many fearful and sad moments, I try to remember the good memories of how we made the best in that situation.
They were small things: Elliot taking a ride in the hospital wagon, picking out food from the cafeteria, Elliot surprising sister with a small toy each night, Ellis saving a Jello for Elliot, me enjoying coffee and treats that friends brought, sitting down with friends to just sit there and get hugged, and thankful that Chris held us all afloat in this chaotic time.
Hearing the past, Ellis whimpered a little while Elliot assured me that the wetness from his eyes were from yawning.
I reminisce wondering how we made it out alive, albeit my nervous breakdown that came later. Help of our wonderful friends and family members sustained us. If we were alone, I’m sure we would’ve crumbled under the pressure.
God loaned us a fragile one, perhaps to make us stronger despite our fears and weakness and realize that He is the ultimate peace giver in the storms. It’s our story of experiencing God’s presence in a vulnerable situation, unlikely time of feeling extreme love, and finding unexpected joys in that hospital space.
*All posted pictures have been approved by Ellis. 😜🎉
Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!