Medical Momma Toolkit: A Tips, Tricks and Encouragement Series

Parenting a medical needs child changes everything.  It is refining, refocusing, hard and hilarious.  In our first year of medical needs parenting, we've learned lots of lessons, most of them by trial and error (heavy on the error if we are putting all our cards on the table).  This year has stretched and blessed us, and also given us a big connection with other medical families.  My circle of solidarity with medical mommas has widened, and my heart longs to serve and encourage them. 

So, I give you a new series, the "Medical Momma Toolkit: Tips, Tricks and Encouragement". 

Guest Posts:

• Day Surgery To Do List by Sharon Ankerich
• To Travel or Stay Local for Medical Care?  by Sarah Fischer
• ER Visits and Advocating for Your Child by Brittan Gotbeter
• Extended Hospital Stays by Whitney Fowler
• Allowing It To Fall Away: Relationships by Becky Ketarkus

 Original Posts:

• Picture Books About Hospitals
• Videos about Hospitals and Medical Needs
• What to Pack for Your Child's Surgery or Hospital Stay
• Medical Needs and Marriage: Ten Tips and  Date Night Q and A Printable
• Hospital Life 101
• Day Surgery: What You Can Expect
• Making the Most of Specialist Appointments
• Dealing with Insurance
• Medical Trauma and Your Child
• Preparing and Staying Connected with Siblings
• Mom and Dad the Advocate
• Helping a Medical Needs Child Cope
• Friendships and Community
• Counseling, Anyone?
• A Time to Laugh
• Post Hospital Stay Shell Shock
• Medical Needs Momma Funnies

Republished Posts:

• God of My Children
• 10 Things Families of Medically Fragile Children Want You to Know
• Letting Others Bless You (A Mary to Martha Nudge)
• 20 Ways to Help Families Facing Medical Challenges
• Upheld
• Chronic
• Saying Yes to Complex Conditions

I am so grateful to the medical mommas who have agreed to guest post, and I anticipate learning a great deal.  As for me, I have no expertise, just an eagerness to share some tips, tricks and encouragement with you, and a hope to bless you in your medical journey. 

Courage, dear hearts. 

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

Hemmed In

The feeling of peace we had during Evie's hospital stay can not be explained.  It was hard for our girl.  It was a flashing sign that yet more medical intervention is needed. 

It was exhausting.  It was emotion loaded. 

Yet somehow, I found myself telling friends that we felt hemmed in. 

 

Psalm 139:5 You hem me in-behind and before;

You have laid your hand upon me.

 

Yes, the hospital was amazing, but the hemming was deeper than that. 

It was arriving at the Ronald McDonald House and finding a care package decorated with flowers waiting for us. 

 It was little Chinese-American, Ohio native friends nourishing us with their kindnesses 

and comforting us with their songs.   

 It was art drawn by the brothers of another special little patient friend. 

It was mac n' cheese (served up by RMH volunteers) with a pig-tailed little buddy who fights a  similar battle.

 It was connection and laughs over egg rolls and pad thai, served up on a rolling tray table between doctor rounds. 

 It was stories told by THREE mommas who had Evelyn's file before us and love her still.

A reminder of God's perfect sovereignty. 

 It was "Cookie Wednesday" and too much to say in too short a time with mommas in the Dr. Levitt fan club  (and a few bonus China mommas). 

(I'm thinking I was taking a little snooze behind the eyelids in this one.)

 

 And when you feel the hemming in, love wins over anxiousness, fear and a hundred unknowns. 

 

Deepest thank you Jennifer, Olivia, Jill, Erin, Erin, Jane,  Amy, and Jennifer. 

Your encouragement was game changing. 

 



Tiny But Mighty Medical Update





Love bears all things, believes all things, hopes all things, endures all things. Love never ends.

1 Corinthians 13

 

This journey with Evelyn has been a marathon of endurance. It has challenged how far our faith will go, and how much our hope will endure.   We love our girl with all that we are though, and will do whatever it takes to make her well. 

 

Since before her adoption, we knew that Evie would need to be seen by out of state specialists.  In April, we planned a trip to Cincinnati Children's Hospital, but Evie had other plans.  Though we rescheduled for July, we eventually decided that we wanted her to be seen by the top pediatric colorectal surgeon in the world, Dr. Levitt, who had moved to Nationwide Hospital in Columbus, OH. 

 

So, we packed our bags, dropped the kids with their grandparents and checked in at the Ronald McDonald House for a week of outpatient testing and consultation.  When our first two tests ended by 10AM on a Friday, we made a last minute decision to drive four hours back to KY to be with family for the weekend. 

 

Unfortunately, by late night Saturday, Evie woke with vomiting and a 104 degree fever, so we were off to the ER.  The small town ER got her fever down and did a culture to determine that she indeed had the kidney infection that we suspected.  They treated her fever and nausea and planned to send her by ambulance to Louisville.  Meanwhile, knowing that she was to have a procedure under anesthesia that Monday morning, we emailed Dr. Levitt just as a heads up.  Though he was travelling out of state, and not a urologist, he emailed us ALL NIGHT, urging us to get her back to Columbus. 

 

Early Sunday morning, we convinced the local ER doctor to let us sign a waiver going against his suggestion to get her to the nearest children's hospital.  After he named every hospital in between Bardstown, KY and Columbus, we headed out in the pouring rain for our four drive back to Nationwide. 

 

With adrenaline pumping and prayers flying, we cruised quickly up the highway until we hit gridlock traffic outside Cincinnati.  Undeterred, and highly trained in defensive driving, Evie's mission minded daddy inched in front of three lanes of traffic, drove the wrong way up the median on I75 and proceeded up an exit ramp, successfully keeping us moving north toward the medical mecca for kids with Evie's needs.

Thanks to Dr. Levitt, she had a direct admission and was being treated by mid-morning. 

(Guess I bragged too early about no overnight hospital stays in June and July!)  We were immediately impressed by her medical team, as all of her testing was rearranged with an effort to not extend our stay, though focusing on the kidney infection. 

 

That first day and night she continued to be sick with spiking temperatures.  On Sunday night, a team rushed in in the middle of the night for an x-ray and blood culture, but thankfully the infection had not spread.   

Weary from two scary nights, we spent the next few days snoozing and letting meds work.    Soon though, it was time for all the yucky tests, each a physical and emotional challenge for all of us. A couple times a day, transport came to stroll Evie through the hallways for her renal ultrasound, X-rays, VCUG, cystoscopy, barium enema, and urodynamics study. 

 

Our girl is so very brave and so incredibly strong.  Though she would sob and rub her feet together in pain, she never resisted.  Mark and I just held her hands, whispered in her ear and prayed.  Thankful for incredibly gentle doctors and nurses, we watched computer screens, trying to understand why red lines that weren't flat would mean more surgery and more treatment.   

As yucky as each test was, she rolled out from under anesthesia looking like a resting angel, her smile soon returning. 

Don't ya know that hospital stays aren't all bad? 

 The silver lining is that they always result in lots of comfort "bip" consumption. 

(Thanks to Jill for the giant bag of happiness!) 

  And sometimes some sneaky "bip" stealing.   

 

We did have some fun making hallway rounds searching for people to say hi to, playing in the playroom and enjoying  all the toys that kept arriving at the hospital and Ronald McDonald House. 

Well worth each of the 600 miles from home, Nationwide Children's Hospital is an amazing, comprehensive clinic for kids with issues like our girl's.   Urology, nephrology, colorectal, neurology, and other fields are not discussed in isolation.  Every specialist that we saw discussed ALL of Evie, past, present and future.   Because she was admitted, we were blessed with lots of time with the surgeons.  They sat on our couch discussing options and drawing explanatory diagrams.  When Dr. Levitt would ask for a test time to be altered, someone from his team would scramble to make it happen. 

 

On our last day, we had an early morning test scheduled, then open time before our whole team clinic appointment.  When we arrived that AM, we passed Dr. Levitt in the coffee shop and he asked where we were headed.  Later, while in the middle of our testing, we got a message saying that we could come over when finished for our clinic visit.    Four surgeons with full waiting rooms changed their schedule so we wouldn't have time between appointments.   

 

 The hospital is new and well designed to comfort and care for families.  Even the food was good!  So impressed!

 

As hard as this week was, over and over again, we got little blessings and signs that God had gone before us once again doing immeasurably more than we could have asked for.   Though Evie was unexpectedly sick and we heard hard things, we still left feeling carried and blessed. And Evelyn?  She just smiled and took it all in, scoping out opportunities to play. 

 So what's next for our tiny but mighty?

 

We are caring for Evelyn a bit more carefully each day, and have added new meds for her bladder.  She was also given two new antibiotics to address some dangerous and highly resistant bacteria that have colonized within her little body.  If her fever goes up to 100.5, we'll be heading to the doctor.  The hope is that infections will be eliminated, so we can put major urology surgery off a few more years.  Though she's mighty, she's still tiny.   

 

She is scheduled for major colorectal surgery back at Nationwide in early November.  They'll be moving things around, improving muscles and removing a fistula.  If kidney infections continue, she'll also have bladder surgery at that same time. 

  

 Prayer requests: 

~That antibiotics will effectively treat bacteria and prevent infection. 

~Discernment as we discuss combining urology and colorectal surgeries.

~That the medications that she's on will be effective, but eliminated if not absolutely necessary. 

~For hope, gratitude and faith to endure as we navigate this medical marathon. 

~For Evie's strength and little heart. 

~That we as a family will have lots of joy and fun on the in-between days, and that we'll lean in to what the Lord is teaching.

Thank you so very much, Team Evie.  We are in awe of the number of people who STILL continue to pray specifically for our girl.  Your enduring dedication and support are the hands and feet of the Lord's abundant love and provision.  We love each of you tremendously. 

Big fat gratitude to Dr. Levitt, Dr. Wood, Dr. McCleod, and a host of AMAZING nurses.

Thanks also to my parents for caring for our kids so we could both be present in Columbus.  Grateful. 

Evie Update: Tethered Cord Surgery

 Surgery time has come again for our tiny but mighty, Evelyn. 

On Friday, May 23rd, she'll have surgery to release her tethered spinal cord and dermal sinus tract.

 

This will be Evie's 9th hospital visit in the US, and we don't even want to fathom the number in her two years of life in China.  Though we hate the thoughts of walking back through the doors of the hospital and all the trauma that that brings, we feel surprisingly, mostly, at peace.

 

We've sat in waiting rooms before.  We've released control of our girl again and again.  We've done IVs and antibiotics.  We've walked into hospitals and we've walked back out.  It's less scary now. 

 

This surgery, though it will be hard on Evie, is a fairly common neurosurgery.  We feel confident in our neurosurgeon and more confident in our God of miracles.  He has a tract record of them. 

 

The recovery is a 2-5 day hospital stay where she will have to remain laying flat.  She'll then be prescribed with time to be flat at home as well. 

 

Prayer Requests:

1.  Safe, no complications, surgery

2.  Wisdom and gentleness of all medical staff

3.  Minimum hospital stay

4.  Release from fear/pain for Evie

5.  For the hearts of her siblings who worry and make sacrifices

 

 

We were informed of Evie's condition during her first hospital stay in December.  At that point, we were told that she has VACTREL association, or a series of related conditions, of which she has three.  

 

 VACTREL

abnormalities of vertebrae (V)

 anus (A)

 cardiovascular tree (C)

trachea (T)

esophagus (E)

renal system (R)

 limb defects (L)

 

 

 

Tethered Cord Explained:

 

      In the case of tethered spinal cord syndrome, a child's spinal cord is abnormally attached to the tissues around the spine (most commonly, at the base of spine). As a result, the spinal cord can’t move freely within the spinal canal.  This abnormal attachment is associated with progressive stretching and increased tension of the spinal cord as a child ages, potentially resulting in a variety of neurological and other symptoms, including motility.   

We are a thousand times ready to have this behind us.   At the same time, it is before us, so we'll face it, pray endlessly, try to find some joy, try to love well, connect with medical staff, release control and rest in the new trust that has developed in us. 

 

But when it is behind us, summer is game on! 

IVs, Angels and Lavish Love: An Evie Update

(forgive the blurry cell photos)

 

We are now a week post-op with Evelyn, and are ready to start reflecting back.  Gratitude swells up first.  Team Evie prayed in such force over her, and it was felt.  Many prayers were answered, and we are incredibly grateful. 

 

The week leading up to the surgery prepared us well.  It was a week where God's love for us felt nothing short of lavish.  Two friends offered to do laundry, one offered to pick up groceries, another offered to send a maid to clean our house, and another brought dinner.  I said no to most of these things, but then a wise mentor kind of friend emailed me reminding me to allow others to walk this road with us.  She told me that if God prompted people to help, that I shouldn't stand in the way.  Honestly, I had started fighting some fear as we looked ahead at the next few months.  Not knowing this, these friends were used to send us a clear message.  God's love is lavish.  He's IN the details, and won't stop providing. 

 

Friday we arrived at the hospital with our little trooper, having followed the no food or drink orders. Our saint of a sister,  Jen, babysat the rest of the littles. 

 

Our mid-day surgery kept getting pushed back due to emergencies.  No complaints from us though, as we got time to snuggle with the patient, we LOVED our nurse and quiet is a rare gift.  Our surgeon's nurse was a gift, saying things that were such a comfort. 

 

 Soon enough, after a dose of loopy juice, a nurse came to get Evie.  We experienced again the feeling of walking her to the doors we couldn't walk through with her, where control is released.  We stood there for a minute, then turned to walk in the opposite direction, trying to figure out how to act normal. 

 

Mark and I opted for a walk in the sunshine, while we waited on word.  These moments are defining ones in our marriage, where we look at each other knowing that the other is the only other person who understands fully.  

 

Eventually a call came that Evie was fine, but the doctor was still working.  In that moment, we knew the surgery was taking longer than expected.  A while later, she was moved to recovery.  Our gift of a surgeon came in to tell us that the revision of her last surgery had become a complete new surgery.  So, we were moved to wait in an overnight room.  Again, another call came that she'd developed a fever and was thrashing around upset.  Later, as I was out getting water, a nurse came to see if one of us could come to calm her down.  The sweet news is that she calmed immediately when Mark entered, such a sign of how far her attachment has come.  In the future, a nurse said that her chart would be marked with "stranger anxiety" so that we can always be in recovery.  After her fever broke, Mark was rolled down the hallway on her bed, with Evelyn tucked safely in his arms, an image that won't be forgotten. 

 

For the next two days, Mark and I alternated between staying with her and our littles at home. 

One of the gifts of this stay was that we were placed in a big and quiet room.  After twelve hours of sleep, despite regular vitals and meds changes, our girl awoke puffy, but smiling.  We spent the AM eating Lay's potato chips and forking some Cheerios. 

Finally, when cabin fever set in, our wonderful nurse brought us a wagon and we hit the hallways.  As we trek along this medical journey, we are learning to take advantage of new things at the hospital.  This time, we hit the library for DVDs, picture books and People magazines.  

 Navigating a wagon and an IV pole around the hallways without knocking things over or ripping the tubes out of my girl is always interesting.   On this day, one of our angels appeared, a hospital volunteer, who has spent every Saturday for 17 years serving. She strolled us around the hallway helping, and then back up to our room.  Later in the day, she appeared with a blanket for Evie, as I'd mentioned that we'd left hers at home.  An hour later, she arrived with a baby doll.  Yet again, she arrived inviting us to a party being thrown by volunteers.  She walked us all the way, and then strolled us around through the party where Evie received a balloon, stickers, glow bands, food, treats, another doll and more.  This time it was her who experienced the lavish treatment.

Our second angel appeared when Evie's IV stopped working.  IV insertion has always been a several hour battle.  Her veins are whispery and fragile.  Thankfully, her chart has been marked for this, so now only an IV specialist is to attempt it.  The woman who was called in was one of the kindest nurses that we'd ever encountered.  She was wonderful to both Evelyn and I, and got the IV going on only two attempts.  We also learned from her expertise that our girl was likely a preemie baby. 

Finally on Sunday, we strolled out of the hospital.  So many prayers had been answered, and our strength, wisdom, gratitude, and appreciation for home and health deepened.

 

The lavishness continued for us, as my mom arrived that same day for a week and half to help us with recovery! 

 

Now, Evie is having spasms of pain and occasional fevers, but is incredibly tough.  She still smiles, and more than anything, just wants to be one of the big kids. 

 

Stitches will be removed Tuesday, and her next stop is Cincinnati Children's Hospital.