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In recovery phase now

Thank you doesn’t seem adequate enough to express our appreciation and gratefulness for all your prayers,  check ins, support, texts,  treats for our kids,  encouragement,  refreshments, and conversation!! We are overwhelmed and humbled by all the love that’s been showered upon us.

I wish I could’ve updated sooner to let you all know how it went,  but it’s been crazy the past few days.

Update:

Ellis successfully made it through her third Fontan surgery; this completes the three stage surgery! Now her oxygen saturation is in the normal range of the high 90s like someone with a healthy heart. Doctors say she will be pinker and no longer blue. There’s no more mixing of blue and red blood, and her right heart will not overwork itself  to supply blood to both the lungs and the body. Exercise tolerance is up too. Older brother may have to up his game at their next throw down match.

 Long term goal:

The goal is to maintain the health of her heart and the new circulation she has as long as possible.  Some children with HLHS get heart transplants at a later age.  I’m not too informed of when this may be necessary.  And to be honest,  I want to be in the dark about this as long as possible.

Surgery day,  September 25th:

After waiting six hours in the waiting room,  the surgeon finally came to tell us the great news that surgery was successful: no surprises; no unexpected discoveries; no changed plans.  Our faces immediately lit up and our shoulders relaxed.  I finally saw a smile on Chris’ face.

So fickle is human emotions because at that moment it felt like I had overcome the world. I was taken aback by my reaction to how I felt 5 minutes ago in the waiting room.

However,  I started to minimize the severity of the situation and got mad at myself for having been a nervous nut all this time.  I thought how silly I had been to have worried so.  This is all in hindsight after I received positive news.  Oh my short term memory! How you play with my mind…I forget that in the midst of it my soul lost a pulse here and there. Through this experience God has been teaching  me so much about the power of prayer and the gift of family and friendships.

As mentioned earlier, getting to this moment began at 20 weeks pregnancy: in all, it took about 4 1/2 years to even sit in that waiting room for 6 hours.

It occurred to me that this personal experience parallels my college years and helps me to relate better to the experience,  except I took the long route and finished in 5 years.  I’ve been going to classes, cramming,  pulling all nighters, falling asleep in class,  applying theory to practice, experimenting, coming up with excuses for missing deadlines,  writing papers, taking tests,  going out on socials,  etc. Monday was like submitting my thesis to the department.

I am so excited yet worn down in this recovery phase. But I am looking forward to some autumn fun by taking the kids for pony rides,  picking pumpkins, drinking lukewarm hot chocolate, and seeing the kids eat turkey legs for Thanksgiving dinner that we usually order from Whole Foods.

 

Once again,  thank you everyone!! Once I get some down time, I’ll update again. ❤❤❤❤

 

 

 

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I got this…I think

Tomorrow Ellis gets admitted into the hospital.

We needed to have another difficult conversation. Alison, the Child Life Specialist at the hospital, coached me on how to delicately facilitate this conversation.

In late July, she had a heart catheterization. That procedure was described to Ellis as a “heart test.” That play session involved a doll that was supposed to be her. This time, the patient was a giraffe that had an “ouchie” on his heart. He came to the hospital for a “heart fix.” To do this, Ellis put the sleeping mask on the giraffe, a blood pressure cuff, medicine straws (IV lines), and band-aids.

When I walked into the consult room after meeting with the anesthesiologist, Ellis was busy taping band-aids on the giraffe and interacting with Alison. They soon wrapped up the session with Ellis removing the sticky band-aids from the giraffe’s legs and arms.

Now that she had a chance to care for the giraffe’s heart ouchie, it was my turn to relate the conversation back to her. I waited for the best time except I could find none. Time was running out, so Saturday afternoon, I asked the kids to have a small chat with me on the couch.

Not knowing how to start the conversation smoothly, I began by restating what they already knew: Ellis has a fragile heart. Both nodded “yes.”

“Well, the doctors say it’s time for her to get a heart fix on Monday,” I said with trepidation.

“Nooooooooooo, I don’t want to go back to Stanford (anything related to the hospital),” replied Ellis, already tearing up. Her strong facade usually keeps her from bursting into tears right away. Instead her lower lips quiver and she looks away.

Elliot got up on his knees like a bunny and wiped his tears on my shirt. His eyes got red and he wanted to know when we were leaving and coming home.

I explained how the doctors are going to fix the ouchie on her heart. I was so thankful that Alison armed me with some pre-written lines on what to say. However, I was surprised that it involved talking about the tubes and wires coming out of her body. Even those specifics were brought up to reiterate the fact that they would make her heart stronger and bigger!

I assured her that doctors and nurses will take very good care of her. Once she feels better, we will move from the 2nd floor (ICU) to the 3rd floor (recovery) where we will be able to eat, play, sleep, have Elliot visit, and even go to the play room and library. Like last time, she can help me pack her favorite things in her suitcase.

Ellis’ cardiologist called me on Friday night to check in. She told me not to be surprised if Ellis gets angry with me after she see wakes up from the surgery. She’ll also be cranky and agitated as a result of the anesthesia. If I were Ellis, I would be livid at me too.

How could you, a person I trust and love, bring me to the hospital for this? If only she knew. That talk is for later.

In the meantime, she’s back to playing with her dinosaurs and Peppa Pig. Both kids have been busy building their imaginary worlds except for the occasional bursts of tears and sadness that she does not want tomorrow to come. I asked her if she was scared. Yes, she is. I asked what scared her. She said “wires.”

I pray that the next few weeks will be uneventful. We just want to do the following three things well:  surgery, recovery, and coming back home together.

We got this…sort of.

CYMERA_20170922_211926We will become stronger, braver, and more resilient as a result of this.

Joshua 1:9

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will go with you wherever you go.”

Even still, my faith is little. Praying for supernatural strength and that God’s presence will be in our midst and in the operating room guiding the hands of doctors and nurses and everyone involved.

 

 

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Update on Ellis for September 25th

2017-09-18 01.15.04
Ellis’ “I can do anything” pose!

September 25th is soon approaching.

Ellis will have her third open heart surgery that day. This will be the last part of the three staged reconstruction surgery for children with HLHS: a condition where the left side of the heart is severely underdeveloped or non-functioning. These surgeries usually take place soon after birth, at 4 to 6 months, and at 3-5 years of age. We’re told that after this surgery she’ll have three chest tubes draining during recovery.

Concerned friends and family always ask if this will be the last one. I wish I could confidently say “yes,” but the truth is I’m not sure. Additional surgeries may be needed in the long run. For now I can only focus on one medical hurdle at a time. It’s been an uphill battle getting to this stage and I have no margin to spare worrying about new health issues we may navigate years later.

The past four years have taught me the importance of essential things that I often took for granted: family, friends, health, peace, time, rest, priorities, gratefulness, and faith to keep us from falling apart into gazillion pieces. Many nights I could do nothing but mumble incomprehensible prayers to God when Ellis throws up for the umpteenth time and turns blue in the face. Other times when she is quiet in the car seat, I panic that something has happened. I reach over to make sure she is responsive and warm; out of habit, I ask Elliot to see what his sister is doing when we’re on the road.

One thing that surprises me although it shouldn’t is that God listens to prayers, those said and unsaid. He has done amazing things in hopeless and anxious-filled situations. Like in the throes of feeling disempowered and exhausted, God would send encouragement in tangible and intangible ways to refresh our spirits to keep going.

It’s been two years since Ellis was admitted to the hospital, so this upcoming experience is shaking me out of complacency. When she was a baby it was easier to do the hospital thing; now she understands and has awareness of what’s happening. Once again, we’ll be meeting with the Child Life Specialist to prepare for her for the upcoming hospital stay. Boy, do I have a newfound appreciation for this resource at the hospital!

Ellis has the hardest experience but I’ve learned that witnessing is also a tough job. The worst part is waiting by the operating room elevator and seeing a group of doctors and nurses wheeling her out in a hospital bed with wires, lines, and tube coming out of her body. This sight brings me to my knees. But I am there to hold her and comfort her through this experience, so I regain my composure and follow them to the doors of the ICU where I need to wait till she gets settled in. I tell myself I can do this, but inside I feel like a quivering chicken.

I’ll be there soon enough: in one week exactly. In the meantime, I’m going to eat more chocolate with my kids, make messy dinosaur crafts, try bubble gum for the first time, sneak in naps when they are watching YouTube, nag them to brush teeth (especially after they tried bubble gum), build another sloppy fort in the living room, and dance like looney birds to Kidz Bop!

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Mommy, you smell like grandma

The other day Elliot surprised me with a hug while I was sorting laundry. He closed his eyes, gave me a tight squeeze and said lovingly, “Mommy, you smell like Cranky hal-mon-ee (grandma in Korean). A couple of years ago, my mother-in-law surprised them with a crane named Cranky for Christmas from Thomas the train collection. Ever since then, that nickname has stayed although it has no ties to her being a cranky person.

They love her, so I took it as a compliment.

How could he have known that his comment would baffle me? I’m pretty sure most people don’t like to be told they smell like an old person. If my mother-in-law were not a tidy person I would have questioned my hygiene habits. However, she is an obsessive cleaner who sanitizes door knobs and toilet flush handles after visitors leave along with other cleaning quirks.

That comment brought memories of my mom’s sweet odor when she cuddled me when I was younger; she smelled warm, sweet, and play dough-y. I thought it was the lotion she used, but years later she smelled the same. Then, there was the odor of my eccentric grandmother who smelled like soy milk, too much powder on her face (it had to be 2 shades lighter than her skin tone), and dried fish (cooking with anchovies and not fond of brushing teeth). It was a funky combination of odors, but I loved its familiarity.

These days I love the smell of my kids when we cuddle or when we’re hanging out on the couch together. I can’t articulate what it actually smells like, but I’ll borrow Elliot’s words to describe it: “makes hearts come out of my eyes.”

An article about the science of smell states that a biological explanation exists as to how a sense of smell allows mothers to recognize their own child’s pheromones from someone else’s. This article explains that babies are familiar with their mother’s pheromones soon after birth; they learned the smell while growing in the womb. Also, when a newborn baby learns to breastfeed, they can find mom’s breast by smelling her pheromones. It’s a natural way of bonding between mother and child.

http://www.inforefuge.com/science-of-smell-mother-infant-bonding

It’s no wonder that mothers love babies’ smell! I assumed the intoxicating smell was from the trace of formula, baby’s soft breath, or scent of shampoo; turns out to be an amazing phenomenon and an unmistakable bond between mother and child.