Heart-fix anniversary: 3 years later together

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.

3 months old

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.

Playing with Hot Wheels car and rocking bassinet. Elliot is 2 and Ellis, very baby

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.

Just stepped on Ellis’ throw up and in state of disbelief. Got mad at sister for not making it to the toilet on time. Mixture of crying and laughing. Summer 2020

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.

Hanging out together during recovery of 3rd surgery

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.

Waiting for the doctors in the surgery waiting area. This is my favorite picture of us holding onto each other. Her little hands on my chest, familiar smell of her face, and her usual warm embrace made my heart break. Outer body goes about doing what I need to do as a caretaker; still smiling; inside, withering under fear.
ICU. She woke up groggy and started crying slowly with a hoarse voice from the effects of the breathing tube. She asked me to come closer to her and asked if her stroller were nearby. When I said yes, she told me to get it so we can go home. Nurse turned on “Beauty and the Beast” movie for her…she hates that movie to this day.
Later in recovery, doctors recommended she take walks to help drain the blood from chest tubes. Amazed at the miracle.
My favorite peeps
Discharge morning
2020. Growing up, and finally lost her first tooth!πŸ˜ƒπŸ˜Šβ€
Birth
7 years later

*All posted pictures have been approved by Ellis. πŸ˜œπŸŽ‰

Cee’s Odd Photo Challenge: In nature

Odd features of nature are cool to capture on camera and even cooler to see in person. This was evident at San Diego Safari Zoo and the San Diego Zoo where they sustain unique plants and trees native to California, as well as recreate and conserve natural habitat s for animals. It never gets old to see its odd beauty again and again.

I forgot to note its name, but the flower in the middle looks like a ripe banana.

A jungle of untamed trunks

My son named this tree “Sausages”

This post is about oddness found in nature but I couldn’t resist adding the next photo. An odd look after playing games.

Not the kind of look you would expect after winning a prize except when someone else’s prize looks better

Jello water is not regular water

Since my last blog entry, the kids and I have been running around town enjoying our newfound freedom. We’re still wary of colds and viruses for Ellis’ sake, but we’re not afraid like we used to be.

(update: 2 weeks after I started writing this entry…Elliot just finished his 5 days of antibiotics for bronchitis. Ellis caught it from him and aspirated from water she sips in secret. Mama’s usual paranoia made a quick comeback.)

The one thing I absolutely wanted to do this autumn was visit a pumpkin patch – on a farm. Previously, we’ve only been to the seasonal pop-up pumpkin patches on vacant lots around town. They’re fun too with their assortment of pumpkins and other activities, but it doesn’t feel like the real thing. An actual farm setting would have less traffic noise, less fences, and less concrete.

We finally crossed off pumpkin patch on our list of to-do activities! It involved a hay ride on a tractor around the sunflower and corn fields, playing on hay stacks, and riding new rides by themselves (first time ever), and exploring different kinds of pumpkins. Ellis enjoyed the setting but she would’ve been happier if she could drink regular water like the rest of us. Every time she sipped her thickened water from a thermos, she would whine, cry, or get angry.

Other than the water ordeal, Ellis is doing great. She’s still on the thickened liquid till her vocal chord heals. It’s uncertain how long it will take to heal or how to fix it in the meantime. She asks me constantly why everyone drinks regular water but why does she need to drink “yucky, jello water.” I’ve learned to keep electronics away from her durung these fits: she tries to throw my computer to the floor, yank off chargers, or press a bunch of random keys.

I remind her, with a forced gentle tone in my voice, that this will not last forever. It’s to keep her healthy, which means we can go adventuring together to fun places.

She nods yes, but two seconds later, she repeats the same question. I then talk about how her lungs don’t like water, but regular water could sneak in there and make her sick. It’s as though she’s making up stuff about what I’m explaining. She asks, “What’s lungs? Is that inside my body?” In her mind, I’m probably the stingy witch who gluttonously drinks water herself but withholds this precious commodity from her parched daughter. The evil laugh is shrouded in long-winded talks about health and lungs.

I anticipate therapy sessions for all of us. However, as she matures, I hope she realizes how hard it was for me to say “no,” when the first thing I want to do is give in to her simple request. Doctors tell me to supplement her hydration by giving water through her stomach tube if she refuses the thickened liquid; I can’t even begin to imagine how that feels.

In my internet search of finding pre-thickened liquids, I learned that difficulty swallowing is more common than I assumed and can stem from various causes. I found thickened coffee too, decaf and caffeinated kinds. As a coffee lover, I don’t know what to make of that. But I’m sure that if that’s the only coffee to drink, I’d buy themΒ  by the crates. I may even learn to savor the taste.

She makes an effort to drink it. When she holds the straw to her mouth, Elliot and I begin our cheering chant. “Go, Ellis, go! Go, Ellis, go!” After she takes a quick sip, looking very focused with her eyes closed and nose squished, we finish with a group hug and tell her we’re very proud of her. Now she wants us to cheer every time. Oh this DIVA!

Through these experiences, we’ve all learned to become caretakers in our own ways. I thought Elliot would resent his sister getting a lot of attention, but he’s proving to be a good big brother: playing along and making a big fuss over her. Other than that, usual squabbles still occur and sibling competition is fierce. Having grown up as an only child, it’s interesting to observe the constantly shifting dynamics of love and hate between them.

 

Trying to get a butterfly to land on his finger.