Preparing for and Enduring Surgeries and Procedures for Medical Needs Children

 



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*Note: I have no training in trauma. I simply have a few notches in my medical momma belt, and gently offer here what I’ve learned.

Many of us adoptive parents said yes to the adoption of almond eyed, precious ones with needs, and by doing so, stepped outside the familiar territory of parenting healthy little people. We did so willingly, though we had no idea what that would look like, or how it might feel.

What breaks our hearts the most is watching our kids endure the poking and testing and NG tubes and chemo infusions and enemas and casting and surgeries and invasive tests and blood transfusions and echocardiograms and sleep studies and catheterizing. And how could we have known how those blasted IV sticks would make us crumble?
 
But it is all needed. So we do it.

Our family is with you, as our small people have experienced hospital stays, surgeries and a whole host of corrective and life-saving medical procedures. This is our offering on how we prepare and endure.

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Parents


The most essential advice is, for us the emotional mom and dad, to stay calm. It’s going to take some time on our knees, because for every procedure, we need peace and trust like a protective blanket. We’ve simply gotta grieve another time. It’s our most important gift to them. They sense our tension and respond.

 

Take turns being the comforting parent. There are often many people in a hospital room during hard moments. We try not to add to it by adding noise and distraction attempts. One parent voice at a time.

 

Don’t make assumptions about what kids understand. Do they understand that medical professionals are helpers that have to do uncomfortable things to make us better? Do they understand that their casts/bandages will eventually come off or that bleeding will stop?

 

Surrender your efforts to make it all better. Let God be the God of your child.
 

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Leading Up to a Procedure or Hospitalization

We are open with our kids. On a level they can understand, we tell them what to expect. We do this in pieces, step by step, when needed. If anesthesia or sedation will happen, we might say, “The nurses will give you some medicine to make you snooze while they help your body. You won’t feel anything. When you wake up, it will be all over.”

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We purchase sticker books, such as Usborne’s Dress the Teddy Bears: Going to the Hospital Sticker Book and Going to the Hospital Sticker Book. We read books, such as Franklin Goes to the Hospital, The Berenstain Bears Hospital Friends and The Surgery Book for Kids.
Sticker and reading time helps us explain what nurses and doctors do, why they wear masks and use stethoscopes, what a hospital rooms look like, and what an IV machine does. We read these before, during, and after hospital stays.

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Dolls and toys expose kids to medical equipment in a fun, hands-on way, such as dolls in wheelchairs and Doc McStuffins doctor’s kits.

The International Children’s Ostomy Educational Foundation even offers ostomy dolls free of charge. We use these for conversational play.

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Before a hospital stay, we let our kids shop for something fun for the hospital, such as crazy socks, a water bottle, slip on shoes that they can wear (once mobile) when walking the halls of the hospital, hair accessories or nail polish.
 

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Promises

On the way to the hospital, we make some promises to look forward to. Then, in the hard moments, we can remind them of plans we made.

“You’ll get to see the big aquarium in the lobby.”
 

“There is a library and play room in this hospital. Should we check those out while you are here?”
 

“If you ever need it, let’s calm ourselves by doing our family hand shake. Or I can hold your hand and we can do big cheek breathes. I could rub your back too.”
 

“Mommy and daddy will buy you a balloon from the gift shop while you are with the doctors and nurses. You’ll see the balloon as soon as you see us. We’ll pick out a balloon for you from the gift shop. What kind should we look for?”
 

“All these people are here to help you. Should we draw them some of your cute pictures when you are finished?”
 

“After the nurse finishes, how about I snuggle in bed with you and watch a princess movie?”

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Just Before Procedure

In the last moments before a procedure, we hold back those tears pooling in our eyes, remind them of our promises, pray, say we love them and distract.

Sing a song.

Make funny stuffed animals voices.

Talk about what flavor popsicle we should choose afterward.
 

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During Procedures

If in the room during hard things (IVs, urodynamic tests, etc.), use a gentle and steady voice, even if they are screaming. We try to “ground” them by:

Holding their hands and questioning, “I’m holding your hand. Do you feel it?”

Ask them to squeeze your hand as hard as they can.

Touch their face and ask them, “Can I see your eyes? Can you see momma? I’m right here.”

Kiss their forehead or rub their hair. “I’m here. I’m here. Do you feel my kisses?”
 

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Let Them Feel

When I was a new medical momma, while my in-pain child was sobbing during an IV/NG tube placement or invasive test, I found myself repeating, “You are OK. You are OK.” Somewhere along the line, I stopped saying this, and started offering permission to acknowledge hard things.

The truth is that what they are experiencing doesn’t feel OK. So, instead, I say, “Does this hurt, baby? I promise if you’ll be brave, it will be over very soon.” 
 
These are gut-wrenching parenting moments. Unfortunately though, they are experiencing trauma.
And processing pain is essential. We don’t want them to soldier through or hide their feelings. Crying is a healthy response. It’s alright if they aren’t “fine” or “okay”. We can’t take away hurt, but we can help them process through it.
 

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After surgeries are over, we don’t just move on. They’ve experienced trauma, so we find ways to let them talk about what they experienced and how they felt. It’s not fun, but it’s helpful.

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Special Requests

Be an advocate. Talk to doctors and nurses about your child’s past medical trauma and adoption attachment.
 

Ask to hold your child during breathing treatments or finger pricks.
 

Ask for permission to be with your child until they are on “loopy meds” or asleep. (Some hospitals allow this, some don’t, depending on the procedure. Just ask.)
 

Request to be in the recovery room when your child wakes up.
 

If a hospital doesn’t allow this, don’t panic. Most don’t. Kids are far more resilient than we imagine.

We always tell our child later where we were and what we were doing while they were “asleep”. “We were in the waiting room waiting for a nurse to come and take us to see you. We prayed for you the whole time and went to buy you a balloon. We never left.”

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Hospital Room

Provide familiar, sensory comforts: a favorite soft bear, fuzzy blanket, Play doh, something to squeeze or chew on. Rub your child’s back, listen to favorite tunes, or do a family handshake. Get in the hospital bed and hold them. On our last hospital stay, we used a diffuser with our daughter’s favorite scented oil.
 

Sometimes kids need to zone out. If your child is upset, it might be time for showing #769 of Frozen. If they are crying, turn it on and just gently ask questions and talk about the movie. Stick with it. They will eventually calm down when the room is calm again.
 

Other times, they need to not watch that 123rd movie. Turn on familiar tunes and read books. Color in a coloring book. Be the calm they need.
 

Tell them that after this is over, they’ll be going home and will soon start to feel better. Make no assumptions that they “get” what is happening.
 

Take full advantage of hospital play rooms, libraries, child life specialists, and art carts.
 

Find things to celebrate. “It was yucky to get your NG tube, but you did it! You are so very brave. Let’s make funny faces on SnapChat.”
 

These times are not fun. For every medical procedure we endure, I vote that we parents get badges or chocolate. We’re a strong bunch though, and we can do hard things.

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In the end, most of the time that we wear a hospital ID sticker, we’re just doing our best, moment by moment, then hour by hour, until it’s day by day and we finally head home. We can’t expect ourselves to respond perfectly, but we can take some intentional steps about preparing our kids.

The good news is that these days will pass.

Even if there is more medical fun to come, we’ll walk into hospitals and we’ll walk back out. We’ll be the firm foundation for our little people, even if we are melting inside.
Because we love them, and it’s just what we do.

Courage, dear heart. – C.S. Lewis

Originally published on No Hands But Ours




Hospital Gratitude: Ronald McDonald House

Dear Ronald McDonald House of Central Ohio,

 

Hundreds of families stream through your doors each week, and you find each one a room, serving them with great love and care.  You give, and you give and you give, offering up hope to families coping with hospital stays.  Without asking anything in return, you serve families carrying the weight of their child's medical needs, and it is no small thing.  We were one of those families twice in the past few months (and will be again next week) and we want you to know how very grateful we are.    

 Finally spotting your sign at the end of our long, anxious car rides is such a welcome site. 
Ronald's red & white socks just make us laugh, and the giggles are a gift.   Evelyn is not so sure, but she's warming up. 

 You've welcomed us with waiting, comfy and clean rooms just across from the hospital, and then pampered us with check in toys and treats.  When we arrive, we're heavy knowing medical procedures are to come for our two year old.  It's a loaded moment, and your kindnesses have mattered. 

 Twice you've given us pre-hospital admission and pre-surgery meals and memories.

And just because kids need to be kids, you've created a space where a little girl can imagine she's a fairy princess. 

Even after our hospital admissions, when we'd been there for days, you still had more to give.  Toys magically appeared by our door, bringing smiles and much needed distraction. 

And your volunteers?  We hope they know they matter.  That they are appreciated.  That each meal they prepared, the toys they donated, each room they cleaned, the handcrafted toy car they gave, the box of bakery cupcakes left on the counter, the smile from the volunteer at the front desk, all mattered tremendously.  We did not get to hug all those volunteers to express our thanks.  We just found the hot meals waiting and gratefully dished up comforting plates. 

Nevertheless, gratitude overflows. 

 

Seeing moms and their kids, churches and groups of company employees giving away their Thursday nights and Saturday mornings to volunteer restores hope.  There is much kindness in the world after all. 

And the ladies who bake cookies almost every afternoon?  Oh my.  They could have made them at home.  It would have been easier.  But the smell of peanut butter blossoms baking on a cold afternoon after hours of sitting by a hospital bed? 

 

Tell them it makes all the difference. 

 

 One of the bakers might just have received one of my teary-eyed hugs. 

You matter, Ronald McDonald House, to our family and so many others. You step in at hard moments and take the hand of families who are physically and emotionally exhausted. 

 

We were distracted when we were there and didn't fully express the level of gratitude that we felt.  So, thank you. The gift you offer matters. 

 

With much gratitude,

Our Team

Hospital Gratitude: Visitors

Remember to give thanks when you are weak.  Let the thanks nourish you, let God's grace make you strong.  ~Ann Voskamp, One Thousand Gifts

 

In July, we took Evelyn to Nationwide Hospital in Columbus, Ohio for a week of tests with the foremost colorectal surgeon in the world, Dr. Marc Levitt.  Our outpatient status changed to admission when she developed a kidney infection.   In the midst of a hard experience, thousands of miles from home, we were blessed with the gift of visitors, and they were game changers. 

 

This surgery trip was no different, and we still can't take it in.  Somehow, though four states away from home, we were lavished with love. 

 Our thoughtful China adoption buddies, Jennifer and Olivia, visited once again, bringing smiles, songs, dance numbers, princess supplies, lunch from Panera, magazines and a fat bag of Trader Joes treats for momma.  Their big, generous hearts brought huge blessing to our day.   These two are a team on a kindness mission, always loving, always encouraging.  They love big and love well and we are deeply grateful. 

 And then there was Erin, who visited Michelle (another surgery momma) and I from Colorado.  As in she flew in from the other side of the country to spend one hour encouraging us on the night of our kids' surgeries.  This sweet soul is incredible generous of heart.  She walked into Evelyn's hospital room and my mushy brain couldn't even put together who she was. So out of context, so far from home, and so impossible that she'd make such a trip.  We've been messaging for months.  I've prayed for her and she's prayed for me.  Then suddenly, there she was, on a day when a hug really meant something. 

 

She and I are forever connected by Love Without Boundaries.  Both Evelyn and her Bekah received love and care at the Heartbridge Healing Home for medically fragile children in Beijing.  Our hearts were broken a few months ago when Bekah passed away after a heart surgery.  The loss is immense.

 

We overflow with gratitude for Erin, who though still mourning the loss of Bekah, came from so far to encourage us.   

We saw no shortage of surgeons during our hospital stay, but this one blew us away. 

Meet Dr. Smith, Evelyn's brilliant and kind urologist.  From Atlanta. 

 

This man saved our girl's life back in December 2013, just after we returned home.  He's kept right on saving her life, performing bladder surgery in January, then again in March, and treated multiple kidney infections.  He's a gift directly from God.  And though he's a busy surgeon, he's led our medical ship in so many ways. 

Dr. Smith was in Columbus for a conference and remembered Evelyn was having a surgery in November, so he spoke with Dr. Levitt, and ended up standing in our hospital room. 

Our gratitude can not be measured. 

These special ladies are some of my "me too" mommas.  Stephanie's daughter, Abby, had surgery on the same day, so we exchanged notes in the hallways and parent break room. 

 

Jennifer lives in Columbus and came by to visit, just as she did in July.  She came bearing chocolate and toys, and the connection of someone who gets us.  Her son, Justin, has a similar condition as Evie. 

He too was Love Without Boundaries baby. 

 

We so wanted a sweet photo of the two of them to send to LWB, but it was just not our girl's best day.  Much gratitude to Jennifer for her visit, her love, her friendship, and her understanding when we needed to rest. 

 Finally came these two incredibly generous families.  They are relatives of our sweet friend, Rachel, from home.  She has family in Columbus, so she called on the troops.  And they came.  They prayed over us, smiled at us, hugged us and brought toys, water bottles and treats. 

 

We got to know each other on our hospital couch, and they spilled out love all over the room. 

They didn't know us, but they came anyway. 

 

Evelyn felt good at one of the visits, but not great at the other.  Both families made her smile though, and both were angels to our family.  Both challenged me to serve bigger and farther outside my comfort zone. 

 The toys and chocolate were a fun treat, but it was the presence of these kind souls that mattered most.  They nourished us with themselves and were walking, talking agents of God's lavish love. 

 

 

Never underestimate the power of a hospital visit, friends.  Even the shortest ones make an impact.
 I'll admit that I've never visited anyone other than family, but that will be changing.  

Courage, dear heart.

We are at Nationwide Hospital in Columbus this week with our tiny yet mighty Evelyn.  She was admitted on Sunday, with surgery on Monday. 

 

It's been a week of hard things and sweet things. Recovery and giggles.

NG tubes, two IVs and a PICC line.  Nurses, surgeons making rounds, cafeteria trays kept hidden, antibiotics, pain meds, an amazing Ronald McDonald House, Elsa socks, and vitals checks,

but also stillness, focus, and tender moments. 



Steps forward and steps back. 
Things to share and things to hold close. 

 Snuggling and playing. 

Times of strength and times when we allowed ourselves not to be.   

 

 After about a day and a half of pain and feeling out of it post surgery, our mighty one's puffiness receded and she started taking walks with her daddy. 

Then she had a couple days of energy surge, and had playtime with buddies and preschool craft hours.  She's watched Frozen 23 times, painted turkeys from a rolling art cart, blown bubbles, had her nails polished in every color, and was loved on by some incredible nurses.  

The end of the week brought fussiness, some weakness, extreme attachment to her momma, the return of pain meds, and lots of extra resting.  Still, she giggles and likes to walk the halls looking for babies. 

Our girl has been NPO (nothing my mouth) since Sunday.  For the last seven days, her hydration and nutrition have come from this IV bag, in the form of dextrose, sodium chloride, and potassium.  Amazingly, she only asks to eat and drink a couple times a day. 

 

This week we've leaned in, stilled ourselves and focused on loving well.  We have stories to tell of fellow patient friends, master surgeons, serving grandparents, a surprise visit from our urologist from home, the blessings of visitors, friends loving us well at home and nurses who are angels in training. 

 

Our hope is that the NPO order will be lifted tomorrow night or Monday.  The prayers of Team Evie are powerful, encouraging and carrying for us.    

 

Evelyn is now a wee bit more tiny, but still is a mighty little soul.   

Courage, dear heart. 

-CS Lewis

Evie's Miracles (Ancient Cell Phone Edition)

So, Evie's miracle quota seems to have no bounds. 

Spine surgery in two spots of Friday, released on Sunday.  Playing by Wednesday. 

 

Our neurosurgeon had prepared us for the worst case scenario of ICU, extended hospital stay and lots of time laying flat at home. 

 

When she came out of surgery complication free and was placed in a regular room, we knew many prayers had been answered.   

 

She spent two days hanging out horizontal doing lots of snoozing and watching "Happy" on the iPad.  Then balloons sent from KY brought smiles, and visitors started to arrive bringing lots more joy with them.   All things look brighter with Grandma in the room.

We've learned that hospital rooms don't have to be boring. 

A super special overnight guest turned the last night into a slumber party!



Big love to Aunt Jen who showed up with Chipotle, perfect stuck on your back toys and braiding skills.  

More big gratitude to Jace and Karen who brought "bips", chocolate and a book on Saturday night, then arrived Sunday AM with donuts and milk.   They've clearly mastered the art of hospital visitation!

 

 Finally, our girl rolled on out in a red wagon. 

Back home, she chilled on her back and slowly started to sit up for short periods. 

 

Then, all of the sudden there was this. 
Our tiny but mighty girl pushed through aches and pains and started playing again. 
Two rows of sutures down her tiny back and she's smiling and sticking noodles in play doh. 
Oh, girl.  You inspire me.  

Thank you, God, for hearing our prayers and blessing Evelyn with another miracle. 

We are in awe of You and her.

Surgery Day

 Yesterday was spine surgery day for our girl.  Thinking we'd hit traffic, we left way early, only to make it there with tons of time to spare.  So, we headed to the hospital garden to take care of some veggies and herbs. 

 These pre-surgery mornings are hard on a momma's heart as you know she had no idea what was coming.  She was just gardening, living moment to moment.  Such wisdom in how she lives. 

 Next, we headed in for lots of hours of food and drink free waiting.  Listening to "Happy" over and over and over again kept her mostly distracted. 

 

Then, after a flurry of nurses and doctors came through, she was given loopy juice and then we walked into surgery.

 

Mark and I walked back down the hallway without out her, control totally released, an experience we've had too many times. 

 

Two hours later, we got word that surgery was over and went without complications.  She had two procedures done, but both were easier than expected.  They has warmed us that ICU was an option for her first night due to her other issues, but she was eventually placed in a regular room.  She was fever free in recovery, but very traumatized, taking her a couple hours to calm down. 

 

She ended the night puffy and loaded up on pain meds, but managed to munch on a few chips. 

 

She'll need to remain on her side, due to the incision on the back and bladder needs on the front.  So, the next days will involve lots of more pain meds, getting her to eat/drink and keeping her still. 

 

 

This day was very hard on our hearts, but we thank God and celebrate a successful surgery.