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Heart-fix anniversary: 3 years later together

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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. 😜🎉

Categories: Faith journey HLHS Hospital visits Mom lIfe Personal growth Raising kids

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singlikewildflowers

Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!

34 replies ›

    1. Right Diana, look at Ellis now! She is full of personality and spunk. God has blessed us beyond measure. Thanks for your prayers and support. I appreciate it so much.
      You noticed the profile pic! Elliot didn’t like his hair style in that photo, so I had to change. 😉
      Growing up…I’m sure we’ll have future disagreements about hair and clothes. I did with my mom.

      Liked by 1 person

      1. And she’s a beautiful little lady. He certainly has and you’re utmost welcome. Haha! Yes, I noticed. Aww, Elliot! 😃 Which child doesn’t? I also had those with my mom. It’s always good to see you on here. Hope you’ll have a blessed weekend.

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      2. Thank you Diana! These guys have been through a lot together, and it’s made them closer. Elliot is protective of his sister and vice versa. I hope they continue this tight bond.
        hahahah, you can relate too! My mom used to hate the low rise jeans, when they were all the rage in the 90s, and would get so mad at me. But at the time, those were the only kinds of jeans sold in stores. Fashion is fickle.
        Take care and have a great weekend! Please give Jerry a high five from me. 🙂

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      3. Esther, you’re utmost welcome. I trust that all is well on your end. I’m hardly on at the moment as I’ve been busy with life. I can’t stay on long, but I hope you are well. I’ll try to catch up with your blog soon.

        I’ll definitely do that! 😄 Take care, my friend, and have a blessed week.

        Liked by 1 person

      4. It sounds you’ve been busy! Hope you are taking care of yourself and feeling well without your headaches.
        Thanks for stopping to say “hi.” Always delighted to hear from you!! Take care and you have a great start to a new week too.

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      5. I’m good by God’s grace! I’ve been enjoying the downtime and relearning to draw again. I haven’t had any headaches recently, save one, so I’m thankful.

        How have you been? I trust that all’s well on your side. May God continue to bless you and yours. Take care, my friend. 💙

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      6. Drawing sounds wonderful! I hope the learning process is going well and you enjoy it. What do you draw?
        I’m good over here in California. Autumn is here and days are shorter. Don’t know how I feel about that yet, but it’ll get shorter soon.
        Hope you are well and thank goodness for infrequent headaches. God bless and have a wonderful start to a new week. Hugs…

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      7. It certainly is and I’m loving it all over again. Since I’m relearning, I’m currently drawing fruits & objects. I’ll be posting my drawings to the blog soon.

        I’m always happy to hear from you; always happy to hear that you’re doing well. Thank you and may God continue to bless and keep you. 💙

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      8. Yes, please post your drawings! That’ll be nice to share with your readers.
        I love to draw too but they’re more cutesy things. Wish I could do still life but that’s way out of my league.
        Happy drawing!
        God bless you too and have a great weekend. 🤩🤩

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  3. It’s okay to write about it and share, Esther. I’m glad you did. I know it’s hard to talk about it with your friends because they don’t know how to respond to you. Don’t apologize. After you share, if they don’t know what to do, relax and let it be silent for a while, don’t change subjects. Don’t say you’d be fine because you don’t feel fine sometimes.

    Elliot is so sweet to his sister. I’m glad to hear that. Can Ellis tell you how she feel? It’s been a long journey to come to the 3rd year surgery and got it done. Does Ellis have any favorite food? Let her eat anything she wants to eat.

    My daughter was a premise. She was always on the low end of normal weight. The doctor said if she wanted to eat ice cream, let her eat it.

    Thank you for sharing the photos and the milestones. Chris is so helpful in doing so many things.

    God is good and his kindness last forever!

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    1. Thank you Miriam for your thoughtful comment!! I feel much better reading through the comments and seeing how supportive readers are. One of my big worries is that I’ll come across as emotionally needy so I hesitate to write about it although blogging is the space to be vulnerable. Writing definitely helps me to sort through those emotions and thoughts.
      Ellis has full access to the pantry for treats anytime. But she’s not into sweets nor carbs. She likes protein. My son, on the other hand, loves what she doesn’t like. When they were younger, he could eat whatever Ellis had to keep it fair. She would only eat a quarter of her ice cream, and then give the rest to her brother. Now he knows that he cannot start off the morning with a chocolate cookie.
      You must’ve had a stressful post birth too with a preemie. Those babies are so fragile and small. It is amazing how they grow, develop, and get healthy in the NICU. Thank God your daughter grew and now she is a mom of 2!! God’s mercies.
      Both kids have a special bond, thankfully. Elliot has been through a lot watching his sister and us going through some awful times. I’m sure it has made him feel insecure, left out, and scared. Chris and I used to worry so much that he may feel resentment but at one point we just let go. No one’s life is perfect. I pray that God will make up for missed experiences and make him a stronger kid because of this situation.
      I agree with your last statement: God is good and his kindness lasts forever.
      He does have a good future and plan for us, although it feels like the world is falling apart.

      Liked by 1 person

  4. Three years! Both seems so recently and so far back in the past. She has come a long way. ❤️ And I agree with others; you don’t need to guard your feelings. We care for you and your family.

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    1. Thanks Erin! You’re right…it does seem like the distant past and yet so recent. I’m so blessed to have friends like you who are always there to encourage me and keep me linked into the neighborhood news. lov ya, and have a good weekend!

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    1. Better to share than bottle up emotions, but the mind goes through leaps and turns just to get the feelings on paper.
      Thank you Andy! I appreciate your comment. Hope you are having a good start to autumn.

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    1. I’ve shared similar parts of this story in the past, but each time I post about it, I tend to fight against my own fear of not wanting sympathy. I can’t control how other people respond, but I can write honestly and that’s all I can do. Writing teaches me a lot about life and myself.
      Thank you for your sweet comment and encouragement! I so appreciate it!!

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    1. Thank you so much!! She’s been busy growing and developing her own personality. I feel blessed to be her mom and to be on this journey with her. It’s got its moments, but her sweet hugs and typo emails she sends me (even though I’m a few steps away from her) makes me happy.
      Have a wonderful rest of the weekend and happy autumn!

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  8. That was such a nice way you put the story and photos together Esther … the good times, the bad times, the fears, the years … she looks health now, sporting that first tooth loss. I am amazed at all that hair at birth. Wow! Ellis is a lucky girl, blessed to have such a loving family and doctors who are attending to her and giving her the best possible care.

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    1. Thank you Linda!! Your kind comment means a lot to me. I tried to put photos of different phases of her life. It was a pain finding the pictures to put together, but we all got nostalgic.
      She had so much hair that it even showed up in the ultrasound. She had hair that shot up like a troll and when it was blow dried, it looked like she’d fall over from the heaviness of her poofy hair.
      It’s been a ride and continues to be, and my attitude about it has improved over the years. One thing is learning to say “no” to commitments (still learning the painful way) but it’s on my mind. I can only do so much without going nuts.
      Thanks again Linda for your thoughtfulness!!

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      1. Amazing that Ellis’ hair showed up in the ultrasound! I looked again and thought “that is an amazing amount of hair at birth!” I, on the other hand, had no hair for a very long time and my mother fashioned it into a curly-cue on the top of my head. Yes, I imagine it is trying every single day and easy to lose your temper due to stress and worry. You are in my thoughts and prayers, even with the wildfires now becoming a memory.

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      2. I had no idea an ultrasound could pick up distinct images like that. We also got a 3-D picture of her in the womb. hahaha.
        Like you, I did not have much hair as a child: wispy fuzz. I lived in Korea with my maternal grandmother till I was four, and her home remedy efforts to encourage wild hair growth, she shaved my whole head to make thicker hair grow. I guess that was the rage at the time.
        Yikes, no difference. Hair is still fine and eyelashes normal length. And my young aunt wanted me to have longer eyelashes, so she trimmed mine. hahaha, yep, a little weird.
        Thank you for your thoughts and prayers! Appreciate it. 🙂 Hugs…

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      3. You became a guinea pig of sorts for hair growth but all done in love. My mom used to tell me that she would twist my hair in that curly-cue with some water and if it “fell” while we were out, she used her spit to “re-fashion” it.

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  9. The post about Ellis fountain operation was the first post I read on your blog … 🙂 Her life is an encouragement to us. I am glad that you are OK and that you can celebrate your third anniversary.

    Greetings from Croatia 🙂

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    1. Thank you Manja! Yes, I do remember that first time connecting with you and you sharing your son’s journey with us too. It’s hard for the kids, but the families also go through a lot trying to create a balanced growing up experience for everyone.
      I’m encouraged to hear that our story has been encouraging to you. There’s so much on our mind from the beginning when you find out about the condition. I’ll stop by your site too soon. I did the other day and the translation feature was not working for me, so I’ll try again. Was happy to see Felipe’s big smile!

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