Hawk eyes this afternoon

Sitting on the couch hawk eyeing Ellis. Morning was fine until she complained of a headache. Told her to drink some water. She did. Didn’t make much of her complaint.

Cuddles with me on the couch during online church service and she gives me that look. It’s the I’m going to barf look. Now I realize she’s serious. Elliot turns to me and says “I’m scared” probably thinking we’ll be away at the hospital for a day or two.

Several rounds of throw ups and I imagine this situation getting worse with dehydration and continuous vomiting. When I get her nausea medicine from the fridge, the expiration date was April 2020. Good news that we haven’t needed it in a while but when you’re stressed you get irritable and irrational.

Gave Chris the evil glare since he’s the medicine manager & pick-up person: not his fault but I felt like being mean to him. These kinds of situations bring out the worst in me towards him. He takes it in stride but it doesn’t make it good either.

Our hospital bag is packed and I’m dressed to drive to th ER if the headache continues. As I was getting ready, grumpily and anxiously, she fell asleep. Maybe she’s sleeping it off. It’s been an hour.

Pediatrician did mention that her abdominal migraines would become head migraines as she gets older. Her proposed remedy: dark room, quiet space, cool air, and sleep.

We’re the only ones in the living room, mild breeze wafting in from the open window and water flowing sounds from the fish tank. I pray and hope her deep sleep will relieve the headache. And I pray the others in the family will forgive me for driving them out of the living room and being so irritated.

At church today the message was about being a light in the world. I did not live up to that, maybe more like a cannon ball.

Thanks for reading my harried thoughts. I’m so thankful to have this space to share the ups and downs of my life adventures with you all.

A few Sundays ago…hopefully after her migraine she’ll be this smiley again today

Can’t sleep even though I’m tired

Every time. When I have an upcoming day slotted with various specialists’ appointments for Ellis, sleeping is impossible. It’s a 6 months check up that we have done for years that I can’t get used to going.

I’ll take a long nap later.

What I want to do. Rest and enjoy the ride.
How I’ll probably feel in the morning

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. 😜🎉

7 years in a nutshell

Seven years ago tonight, I arrived at the hospital to get induced for labor at 36 weeks. It was a fearful night full of unknowns and insecurity. The birth plan was for the baby to be born the next afternoon, so she could be taken to the NICU for care before the shift change for the medical team.

I didn’t know if the next day was going to be the worst day of my life: would we see our newborn and begin the medical care to bring her home soon, or were we going to leave the hospital with news that every parent dreads?

For 16 weeks, our family prepared for the best and the worst. When we first found out that our 20 week fetus had a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), we were terrified from the news and prospect of how we would be able to navigate the future. Doctors sat us down telling us the hardships ahead: surgeries, emergencies, hospitalizations, oxygen saturation, weight and eating issues, feeding tubes, etc. We were lucky to have found out early on, because she could get timely intervention after birth. In some unfortunate cases, the condition is discovered after birth and doctors can lose valuable time to give appropriate care. If no surgical intervention is involved, the condition is fatal.

After the first surgery, the most precarious time would be the first year with survival rates of 20-60%.

Our faces turned white and breathing short. After the doctors explained the diagnosis of this condition, we were counseled with the option to terminate. Feeling like I was in a dream, I had to ask the doctor how much time I had to decide. Chris and I said nothing to each other on the drive home. We picked up lunch, ate at home, and took a nap. Elliot, 1 1/2 year old at the time, was mad that we had the audacity to nap and not give him attention: he came over and bonked us on the head with an empty plastic milk carton. That was his nonverbal cue for ‘I want milk.’

It took us a few days to process the news. We didn’t talk about it, and when we finally discussed it, we both agreed this baby was God’s special gift and he had good plans for us: difficult but good. And the rest is history. It’s been indescribably difficult with lots of unexpected hospital trips, constant nightmares, depression, and a heart held in fear of the worst.

Yet in the storm, God has blessed us so much through her. We call her the ‘game changer,’ because our lives turned upside down when she arrived. What we foresaw for the future stayed in the plan phase. I couldn’t have imagined this kind of life or have wanted it, but now I can’t imagine something different. In difficult times God never lets us down. This is weird to say yet some of my fondest memories are these hospital stays, which made me realize that memorable moments do not only mean happy experiences but hard ones too. We talk about those times with tenderness, disbelief, and humor in recalling what happened. On occasion, Elliot still talks about the day I cried and had to drop him off at our neighbor’s house when I had to drive Ellis to the E.R. He says the chips he had with our neighbor that day was the best ever.

These experiences try our spirits and stretches our faith. We kick and scream, metaphorically, when we think Ellis is getting sick again casting a dark gloom over me. Chris knows that I get super sensitive and start yelling. Don’t ask: I just do because he asks questions, that seem non-common sense about what to do. We know this is my coping mechanism, so he’s aware it’s not a personal attack.

But I love my little girl with her funny laughs, wild hair, and spunkiness. The best is when she hugs me and loves on me at random times. One time I had a nightmare and cried in my sleep. It was late at night but she woke up, turned over, and patted me on my back saying, “Mommy, it’s okay. You’re just tired.” The she fell back asleep. It’s like she was the comforter that night.

We’ve been through a lot together and have seen each other at rock bottom. We’ve cried holding each other for different reasons, but fear was the underlying motivation. But when I feel her warm arms around me, I’m reminded how God has made her stronger and bigger all these years. A miracle.

God had different plans for us; plans we wanted to refuse at first. Still, we don’t know what the future holds but we trust God by looking at how he has brought us through the sudden storms. Moments when my heart drop from terror of the worst outcome, I can do nothing but sigh and give it to God. I don’t do this because I’m super holy or have great faith. The weight of the issue drowns me and it’s so deep that I can only give it to God for keeping my heart safe.

Heart clinic appointment…a long day ahead

I don’t know who’s more anxious: me or Ellis. It’s a super early appointment that lasts hours seeing different specialists. And why I’m still not sleeping is just nuts.

Brings back awful memories for our family. Condition has stabilized so much but it triggers a bunch of stuff and my nightmares get worse days before these visits.

I packed a barf bag and baby wipes just in case.

Throughout the day, she’s been reminding me that she’s scared of shots. Me too. We’re both exhausted at the end for different reasons and we come home to Elliot eager to play and talk about all that’s happened. My goodness, all I can do by then is change into jammies and conk out.

He also wants to know if Ellis got a post- clinic prize and if he got one too. It’s a strange tradition we started since she was a baby. I didn’t want Elliot to resent his sister for all the times I’d be with her running to and fro appointments, so I’d get prizes for both Ellis and Elliot from the hospital gift shop. When she got older, she’d pick his prize.

It’s saved us a lot of grief so I can’t complain. But this means we have a bunch of random toys.

Anyways, we’ve come a long way in a positive direction thanks to God and the medical doctors caring for Ellis. I always feel funky the night before these appointments, which only exacerbates my insomnia.

Thanks for reading…needed to share before falling asleep.

The appointment where brother tagged along