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

Ellis’ update: Heart is well! Instead, it’s abdominal migraine.

It’s been a few days since I’ve been able to update even though Ellis got discharged Saturday night. I had little time to sit down and actually write something that made sense. I was running on fumes and any quiet moment still kept my adrenaline running. Once our family got home, all the tiredness and a dash of crankiness swept over me.

While in the hospital, I had to answer lots of questions and repeat explaining her symptoms to various specialists. Typical questions: What brought her in for the last 2 hospitalizations?; What tests did they do?; Did she throw up again?; How many times?; Does her stomach hurt?; Where does it hurt?; Did she pee?; How many times?; How much?; How much did she drink?; and, What did she eat?

Even though the nurses asked Ellis these questions, she refused to answer or give eye contact. She clammed up immediately pretending that they weren’t there. In the first and second hospitalizations she was reluctantly cooperative, but the multiple lab draws, check-ups, EKG’s, ultrasounds, and x-rays drove her to the limit. She had little control of the situation and felt vulnerable.

Drama went down when asked to change into a hospital gown before her heart catherization. She was used to wearing her own pj’s in the hospital, but for a procedure she needed to change. This brought on a flood of tears and downright refusal to change. She stiffened her body and wouldn’t let me take off her clothes or even put on the gown. Thank you nurses for your patience, kindness, and smiles!!

The first day we went to the emergency room I had my first meal at 5:30 p.m. We stayed in one of the back rooms with Ellis dry heaving and squirming with stomach pains. She was getting intravenous fluids for her dehydration, but the doctors felt uncomfortable managing a healthy amount of fluids in her body: I learned that it’s a fine balance of how much fluid she can retain in relation to her output. All of this can negatively affect her heart function.

The emergency room doctor informed us that Ellis’ “significant and complex medical history” exceeds their hospital capacity. Best care for her requires a transfer to our familiar hospital, Lucile Packard Children’s Hospital via ambulance. At first the diagnosis was UTI, which was getting treated with intravenous antibiotics, so I didn’t know why we had to transfer. I just received a bill from last month’s ride, so naturally I was hesitant at first. I was told UTI was not the main factor and something else could be contributing to her sickness. l was advised that it’s best to rule out the heart as causing her stomach pains.

Back at LCPH and saw familiar faces again. First 2 nights pushed my physical and mental capacity farther than I thought I could handle. Her symptoms remained a big mystery and these symptoms got us readmitted 3 times. Everyone was trying to figure it out: Is it heart related or gastrointestinal? To get to the final diagnosis they had to rule out other causes. This required a heart catheterization, which is an invasive exam that requires anesthesia. She overheard the conversation and after they left the room, she said “Tell me what are they going to do. I’m scared.”

On the third day, her condition started to slowly improve. This was evident with her smiling, talking, going to the bathroom, and saying she’s hungry. Like I mentioned before, she refused to answer questions or look at anyone who came into the room. It was hard to see her this lethargic: I missed her funny laugh, cute talking mannerisms, her running around, raspy voice, and the healthy Ellis I know.

Sleeping on the daybed with mommy instead of the hospital bed. Don’t care about the crazy bedhead. 🙂

Thankfully, all of these tests showed that her heart is working well! The previous sicknesses too were not related to the heart. This is a huge relief, because her single ventricle circulation is precious and must stay healthy as long as possible before more interventions are necessary.

What made me sad at goodbyes at night was Elliot tearing up and wiping his eyes. His lingering hugs almost made me cry. It’s a matter of who needs me more. I shared this with a close friend who has walked this journey with me many times, and she reassured me that Elliot is stronger than I think. Yes, he is. This is part of growing up and, hopefully, building resilience. But any mom will have pangs in her heart to feel the warm embrace of your child who doesn’t want to let go.

Through our five days in the hospital, I was holding up. I didn’t fall apart. I didn’t get sick. I didn’t have high expectations for my condition. But thankfully God gave me grace. He blessed me through friends’ acts of encouragement and generosity, phone calls from family, and Chris and Elliot who visited every night. The latter one gave us a sense of normalcy for our family and a chance for the kids to play together.

Thank you everyone for your encouraging comments, support, and love!! These experiences show me how much goodness exists in the world even when the situation seems bleak.

I know there was much more thoughts I had, but my mind hasn’t processed it yet. And if you’ve read this far, thank you.

After all the tests, final prognosis: Abdominal Migraine. Children, from ages 5-9, get this unexpectedly that can last from several hours to 3 days. It’s not a head migraine but a migraine in the stomach. We are resuming an old medication, seeing gi soon, and figuring out its triggers. It may be stress related. I think this may contribute to my stress too!! Next time it happens we will have to go back to the Emergency Department for treatment. This is life for us: a strange norm.

In the e.r. again with stomach issues

Today was Ellis’ third trip to the e.r. in one month. Speechless. Familiar frantic drive, packing overnight hospital bag, phone call to Chris to hurry home to babysit Elliot.

I hope this time they find the root cause of the severe stomach cramps and dry heaving. She shakes while her body is hunched over her throw-up bag. No answers. The symptoms come fast and severe: they immobilize our family into basket cases.

Waiting for test and imaging results in the e.r. Looks like another hospital stay.

I pray that I don’t fall apart. I’m holding up, but this is a lot of mental, emotional, and physical strain to take: 3rd e.r. visit in one month. If we stay, 3rd hospitalization.

You know it’s weird when lab people and nurses recognize you. I just saw the front desk lady from Standord heart center in the e.r. this afternoon: her son was sick. Small world.

My heart goes out for Elliot. He’s just doing his thing and he gets thrown into these overwhelming days: mommy crying, running around packing overnight bag, Ellis throwing up, me calling people for help.

He’s familiar with the emergency drill but today we couldn’t follow through with our afternoon plans and picking up Chik fil A. With tears in his eyes he said, “Ellis is getting kind of annoying.” But just yesterday he held her blankie while she was throwing up. Complex relationship. We’re figuring it out.

Thanks Chris for holding down the fort at home! Doctor is calling the children’s floor to get us admitted.

Today is one wild december day.

Ninja pose this morning

In the er this afternoon

No definite reason for dry heaving