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!😃😊❤
Birth
7 years later

*All posted pictures have been approved by Ellis. 😜🎉

2020 VBS experience: Zoom style

Our much anticipated event for the summer, VBS (Vacation Bible School), has come and gone too soon. For the past few evenings, kids were delighted to still attend VBS through Zoom and to see the faces of friends and teachers in the meeting. They didn’t have the in- person experience of learning the moves to the songs, playing games, and making edible crafts, but kids adjusted quickly to the new format enjoying it as much.

They bemoaned the fact that it was too short and they would’ve liked it if the church added more days. That’s saying a lot, because they had homework to complete and had to sit still in front of the computer for 90 minutes for 4 evenings.

What a different set up in 2020 than pre-pandemic programs. The familiar summer VBS meant being at church four afternoons for four days where all the activities are geared towards children having fun and learning about Jesus. As you turn into the parking lot, you can see car doors opened with kids getting ready and parents stuffing their bags with water bottles, extra clothes, or whatever else they think they may need. By the time you walk up to the registration booth, the upbeat VBS music thumps in the background and you admire the colorful decor, theme specific to that year’s VBS, displayed in and outside the church.

For parents, the range and pace of activities contribute to post VBS exhaustion with muscle aches and pains. I don’t know how the volunteers and pastors make it through the week with high energy and a smile on their faces.

It’s a bit of everything from learning about Jesus through stories and verses, getting up on stage to sing and dance the songs you just learned, hanging out with friends and teachers in your classrooms, making crafts, eating, and playing team games. The program reminds me of a pep rally: colorful; loud; fun; affirming; interactive; lively; and memorable.

I am truly grateful for the pastors, volunteer teachers and teens, parents, children, those working behind the scenes who made this experience possible. Each year my kids complain that VBS days are too short and ask how many months till the next VBS. They wonder what the music will be like and which color t-shirts they’ll wear in their grades. When I told my kids that the first VBS, which started over one hundred years ago, lasted 4 weeks, they asked why it had to be shortened to a week. VBS history is interesting and stemmed out a need for kids to have wholesome activities during the summer. Check out: wikipedia

Not to sound corny but this is my aspiration: I hope these summer experiences will be a step towards guiding my kids to Jesus and to pursue the things of God (in the way they live and work they choose). Although I know that’s the worthiest goal, I continually need to remind myself of this; it’s easy to get distracted by attaining more achievement and success. There’s got to be more than this; but there’s also fear for the unknown of what God has in store for me, for us.

Here are some VBS pictures of my kiddos through the years:

2016. Theme: Deep sea discovery. God is with me wherever I go. Genesis 28:15 Elliot’s 2nd VBS summer. You can see his eyes a bit puffy from going to the classroom by himself. Sister was too young to participate, but my friend was able to get her a goody bag like other participating kids. Ellis held that bag like it contained gold and carefully looked at each goody once we got home.

Kind words from an unexpected stranger

The other day I made a phone call to one of Ellis’ healthcare supply office. We’ve been their customer for seven years and never questioned their bill. They became a part of our family through the years.

I signed the contract, a scroll-like document, for all the supplies we needed at home when Ellis got discharged from the hospital at one-month-old. I led the way holding a baby carrier and the hospital volunteer pulling a red wagon filled with medical supplies to help load into the car. Here’s my list of supplies: feeding pump, pole, tube feeding lines, bandage tape, dark glass jug of MCT oil to mix with formula, gauze, scissors, IV bags, syringes, charger, oximeter machine, weight scale, pole, and a thick binder of instructions and phone numbers. I felt like I had undergone a super accelerated and condensed nursing program to bring my kid home.

Somewhere in the middle of all this, Ellis quietly sat in her car seat looking around at the outsides for the first time.

Something about that first month and going through traumatic situations together, we have been two peas in a pod. Since the time I held her on my knees looking at me in the ICU, with wires and tubes coming out of her, I have been lost in love as a protector and mom. We stayed together always. Even when admitted to the hospital, she would freak out if I was not on the bed with her. Nurses, exasperated with her crying, would just get an adult bed and have me lie down with her. It was better than the chair, but even a small baby takes up a lot of bed space. I always had cold butt as it stuck out to make more room for her in the middle.

That’s the backdrop for my story. Needing to reorder supplies monthly, it became an unquestioned part of our lives. We ordered religiously for the first 5 years of her life, but it’s been sporadic for the past 2 years. Lots of changes in diet, routine, and stomach upset that made us reconsider supplemental night time feeding of extra caloric formula. Also, to hear the whirring of the pump throughout the night keeps me in a state of half awake/ half asleep mode. Then, if you don’t follow close instructions, you end up with formula spills, stomach upset that leads to throw up, beep sounds from the pump, extension line wrapped around the kid during sleep, changing all the bedding in the middle of the night, wiping the carpet with damp towel so floor doesn’t smell like vanilla milkshake, or washing face and hands from the throw up debris.

Current goal: get all of her nutritional needs by oral eating. This is a lot to ask for these heart kids because their heart works overtime in pumping blood, burning calories quickly. Weight gain is painfully slow. When she says “I’m hungry,” I panic. I feel that if she does not eat something right at that moment, she will pass out. I see that as a reflection of myself as a good parent. It’s irrational, I know.

Well, it just came to my attention that I was not aware of the fine print from the company. We receive lots of hospital bills, insurance company letters, packets of Explanation of benefits, and duplicates of hospital bills that are overdue, insurance pending, or payment not processed yet. The paperwork is confusing and interpreting the deductible, out of pocket, maximum, OMG, it’s baffling for lay people like me who do not fully comprehend the billing terminology.

Anyways, last week I received 10 separate bills in one day from the collection agency. It was kind of funny as I handed Elliot the empty envelopes to recycle. I didn’t realize our bills were this overdue. I assumed that we weren’t being charged for months we didn’t order supplies, which were quite a few months. Well, I forgot that we were renting the pump. Fine print: If you have the pump, you pay for the monthly supplies whether you order or not. Had no idea.

Spoke with the customer representative, billing department, blah blah blah. All the same thing. I don’t know where my anger was directed: me or this company. I couldn’t believe my oversight and complacency; I couldn’t believe their fine print and the continual repeat that this is their policy. It seemed unethical to not update parents of this billing practice from time to time. When your kid has a chronic illness, a lot of things fly straight through your head and forgetfulness runs rampant. You’re too tired and too worried.

I was exasperated and asked to speak with the supervisor. The lady asked me, “for what?” and I got majorly pd off. But there’s Ellis looking at me as I’m talking on the phone; she knows it’s about her because these phone conversations begin with confirming patient’s name and date of birth. Ugh, can’t get too mad on the phone or she may think I’m mad at her. She may think she’s to blame for my frustration.

All these things are going through my mind, and in the middle of it, Elliot calls “Mommy” like 5 times asking me if he could eat the peanut butter-jelly sandwich on the counter and Ellis announcing that says she needs to poop. Adult reality and kid reality; my mind felt like mush.

Ok, I’m taking too long here. I didn’t have the bandwidth to carry this conversation further. I called the collection agency to settle the debt. I needed to be over with this or it’ll hang over my head the rest of the day, the week.

I’m so mad that I’m sobbing on the phone as I tell the collector our account number and all that confirmation info. The guy must’ve thought I was nuts or either being dramatic to get a lower settlement. I explained the situation and asked what final settlement amount he could offer. I thought he may assume I’m not sincere with my story, so I had to explain that I was going to pay the bill but that this whole situation upset me tremendously.

I never expected to hear words of comfort from a debt collector: Don’t be too hard on myself.; It’s understandable how I could’ve not known in the middle of all this medical drama with your kid.; It’s a shame I wasn’t notified about this during a service pause.; He apologized that I was going through this but that now I know and can decide whether to continue business with them.

I cried more thinking how God comforts me through unexpected people. He knows the big toll caretaking has on me emotionally, physically, and spiritually. But when I feel the day is too long to bear, He sends surprises in is perfect timing. Knowing that He cares so much to convey affirming words to me made me sadder with gratefulness and humility that He acknowledges a flawed person like me.

It was a surreal conversation. You don’t usually think of a debt collector showing this kind of thoughtful understanding to a collectee. His kindness made me cry more. Settled the debt, cancelled the account, and cried because I felt relieved to have this behind me.

The kids asked me why I cried. I explained that I was mad at myself for a stupid mistake of mine. I apologized to Elliot that I was short with him when he was just asking about a sandwich. Ellis shakes her head side to side like a grown up, saying “Mommy, it’s ok. Everyone makes mistakes.”

p.s. I am posting this without further edit. It takes so long to edit that it may keep me up through the night. I’m not upset anymore and have made peace with the situation. The medical supply company is just doing their business and I have the choice to change providers. No hate…I’m over it now.

Kid’s bible study videos: “The So & So Show”

*This turned out to be a longer post than planned. I’m hoping it’ll be useful for parents with young children searching for a biblical and engaging bible study show. And it doesn’t really matter the age, even grown ups will enjoy it too.

For Sunday School, my kids have been excitedly watching “The So & So Show” shown on the People’s Church website. On Sundays, our family usually tunes into an online service at Central Church in Las Vegas with pastor Jud Wilhite. As a spevial guest, he invited his pastor friend Herbert Cooper, senior pastor at People’s Church in Oklahoma, to preach that Sunday. Oh wow, his message was powerful, Jesus centered, and entertaining with his jokes and personal stories.

Few weeks ago, I felt like listening to a sermon (it’s a weird thing since college) and typed in the web address People’s Church. https://peoples.church/

Their main website was finicky that day or it could have been my ultra-slow internet connection. Anyways, my sophisticated trouble shooting method involves furiously clicking and tapping on keys. Kids joined me and I knew my quiet time was over. Clicked on the “Kid’s Home” and was surprised it loaded.

We clicked on lesson geared towards 2nd-5th grade students. But they also had groups for preschool and kindergarten/ first grade children. It was the perfect discovery for us during this shelter-in-place.

After the first show, my kids were hooked and watched the same episode several times. Now they ask when the next “The So & So Show” will be online.

The So & So Show Vinyl Stickers
https://store.thinkorange.com/the-so-and-so-show-stickers.html?category_id=229

Here is a brief overview if you’re interested in watching it with your kids. New episodes are uploaded every Saturday.

  1. Upbeat worship song and dance (one of the worship leaders looks like our babysitter, and they talk about it each time the camera focuses on him)
  2. A talk show setting hosted by 2 White middle-aged guys, named Jon and Brandon, who use fun props, over-dramatic reactions that kids find appealing, and relatable dialogue to introduce the topic of the week
  3. This introduction transitions to an interview with a surprise guest, called “Someone who knows stuff” (ex. slime expert, cotton candy maker, phony sound maker for movies, etc.)
  4. Then, a video bubble pops up with the Bible story host named Kellen, a young Black guy with a halo-syle Afro. He interacts with Jon and Brandon and connects the story to the week’s topic. The story is short and presented in a casual manner, and Kellen also narrates the skit played by various people (adults, kids, and puppets).
  5. Final part of the show ends with a Reveal the Question, a question of the day. Thought-provoking questions that challenge both kids and adults about your relationship with God.

This week’s question: HOW DOES GOD TRY TO GET YOUR ATTENTION?

We are tremendous fans of this show! Here’s a link to the poster of the show’s cast. I love how Bible stories are told in engaging ways that help kids to understand the story and learn what it means to follow Jesus.

Big, last minute discovery for me:

While double checking the spelling of the host’s names, I discovered a new thing!! “The So & So Show” has its own YouTube channel (I just subscribed). It’s also a popular curriculum resource developed by a church ministry company called ThinkOrange.

They provide a variety of curriculum, resources for different age groups, and I believe these shows are pre-made for churches to supplement their children’s programs. The website has a store where tou can stickers, books, and posters. I can imagine my kid’s excitement when I tell them we can get their merch. aye yai yai…

Please check out this show at https://peoples.church/pc-kids-at-home/ and if you want to hear an inspiring and spirit-filled message, check out Herbert Cooper.

God bless and praying you will start the new week fresh and with faith!

Depression trigger incidents

About a week ago, Ellis plopped herself next to me on the couch and asked what I was writing on my blog. When she says something funny, she always asks me to put it on my blog and to say that she said it. She’ll take silly selfies or blurry pictures of our pet fish and ask me to post them. She probably thought it was a post like that.

Turning my face to hers, I quickly closed my computer and said “nothing.”

She’s learning how to read, so I can imagine her sounding out “depression.” Too young to talk about it with her. But this incident made me reflect on the unintended consequences of what I’m sharing.

This mental health issue started before Ellis’ heart journey. I wanted to clarify that, because I have been writing sporadically about it in my blog. In each of those posts, I reference it back to my current life circumstance of raising a heart child. However, it’s been a long-standing issue.

Last night a new thought occurred to me: what if in the future Ellis blames herself for my problem? In no way do I want that. This problem is mine.

It started years before having children and came to a full meltdown in 2009. Years of pent-up stress, meeting familial expectations, exhaustion, feeling lonely, no job prospect after graduation, student loans, and fears of failing at the last step overwhelmed me the day before defending my dissertation.

I never knew my knees could shake and buckle like that in public and wanting to just shut myself into a room. I went down to the subway station to take the train to Korean town for comfort food. Well, the place started spinning and I began to sweat while short of breath. I put one foot into the subway, thought I would collapse once the doors closed, and jumped out right before the doors closed.

Claustrophobia and panic attack: in the middle of rush hour in Midtown NYC.

I’ve had previous episodes, but the 2009 one was the most blatantly painful one that showed me what a meltdown looked like. In that phase of my life, I coped by avoiding uncomfortable situations that triggered panic, worry for days if I had to go to a new place, or gritting my teeth with a smile when the panic set in.

The first time I sought professional help was with postpartum depression. I dreaded going to the doctor assuming they’d put me in the ward. When I left for the doctor’s office, I asked Chris not to be surprised if I didn’t come home for a few days. I shared the same concern with the doctor, only to be told that many new moms suffer from postpartum depression.The depression saga continues with ups and downs. This is the first time seeking help for medication management outside of a general practitioner’s prescription, which is an unfamiliar thing for me. I want to step away from the the cloud constantly hanging over my head.

My ambivalence with seeing a psychiatrist keeps me from seeking God. He has compassion on me. Like a friend said, the mind is part of our body and it needs medical attention too. There’s no shame for a cancer patient who takes medication or seeks treatment.

However, there’s an unhealthy perception that I haven’t prayed harder or my faith is weak. Is it bad to want to be happy? And what happens afterwards when I am no longer sad and anxious? Lots of soul searching and feeling torn in wanting to get better but scared to go there as well. I know…it’s a dilemma.

ahhhh, to look at the ocean and feel its breeze