Chronic: The Race Set Before Us

I am coming to terms with it.  This is not passing.  It’s not over after a surgery, or two.  Or after a therapy session, or three.  The first year is behind us, but there are more miles in this marathon.  I’m discovering what chronic means.  I’m learning that adopting a child labeled medically complex truly does mean “continuous care” and it will “require services from different practitioners in multiple settings over time“. 

 

We knew it would be a stretch, but we didn’t expect to unravel completely.   We cherished our comfy, together feeling, unaware we were wound around the wrong things.

 

Life is now a marathon of appointments,  surgeries, X-rays, nurse calls, research, MRIs, infection, complications, testing, PICC lines, anesthesia, ultrasounds, therapy, and care taking.  And our emotions dart between fear, hope, tears, weakness, hero mode determination, numbness, faith,  exhaustion, new joy, and gratitude.   Human feelings and supernatural strength step simultaneously together.

 

So we must face what chronic and complex mean.

 

The antibiotics will continue. 
The appointments will continue.
The care taking will continue.
The “catastrophic” insurance medical cap will be met. 
More procedures. More medical supplies.  More hurt.  More miles to go.

 

We wonder if our prayer team will start dwindling.
We wonder if people are weary of medical talk and prayer requests. 
We wonder if we’ll figure out how to truthfully yet concisely answer, “How is she?”
We wonder if telling the truth is whining, because we should be running the race better. 
We wonder if doctors are making the best decisions.
We wonder if God wants us to hope for miracles or accept realities.

 

Well intentioned people in our lives regularly encourage us with, “It will be fine.”  “She’ll be fine.”  “You’ll be fine.”  But what do you do when your heavy heart simply doesn’t feel “fine” watching your child endure continual procedures, tests and hurts?   Should we try harder to be fine? 

 

We wonder how parents of more complex children do it.  We think, “Well that family adopted a child with the much harder XYZ disease and they seem together.”  Or, “That family has adopted four kids with complex needs, and are adopting three more, what’s my problem?” 

 

But our child’s pain messes with us.  When discomfort comes daily, tears flow regularly, painful tests are ongoing, and caretaking that hurts is required, there is trauma to process.    Is my faith growing?  Yes.  Am I feeling blessed and refined?  Yes.  But there is still trauma to process. 

 

No matter the internal or external pressures we feel, we must give ourselves the freedom and time  to feel what is to be felt.  To look at the dark parts of the trail and not look away.  God is allowing us to walk through something chronically hard.  From the world’s perspective our child might end the race “fine”, but a parent’s heart still has steps to take.   

 

Read the rest over at No Hands But Ours. 

 

Special thanks to Tish Goff for her beautiful photographs.

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

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. 

Team Evie Update

"As soon as I saw you, I knew an adventure was going to happen." 

~Winnie the Pooh

 

The ride with tiny, but mighty Evelyn continues.  We are so humbled by, and grateful to, so many who have prayed for her, inquired about her, loved on her, encouraged us and helped in a hundred ways.  Forgive us for not doing a CaringBridge style update lately.  We appreciate your support so deeply and want you to know when to pray and when to celebrate! 

 

Evie had spine surgery in late May, and was so strong.  She recovered beautifully and clearly feels much better.  Thankfully, she is walking more easily and no longer has spasms of pain.  We know that that surgery contributed significantly to her overall well being.  Big neurosurgery celebration!

 

We are also happy to report that there have been no overnight hospital stays in June or July!   We have been able to have many, much needed days of summer fun.  (No big beach vacay yet, but we're dreaming one up for sometime soon.)  Our whole family has been able to rest and play, and we are so very grateful. 

 

The best news?  Evie's latest miracle is that our nephrologist reports that her one damaged kidney with reflux is currently functioning "mostly normally" and only suggested a new medicine and continued blood work!   Her bladder surgeries/procedures are saving her kidney.  Kidney party, friends, kidney party!  The unexpected news was a gift to our weary ears. 

 

We would love your continued prayers as Evie's journey is far from over.  Kidney infections remain our main concern, as it is so desperately important to protect that miracle kidney.  Our urologist is concerned and mentioned a potential "serious talk" about major bladder reconstruction.  This was in our girl's future, but years down the road. 

 

What's next for Evelyn is a week of consultations and testing with several specialists at Nationwide Hospital in Columbus, Ohio. There will be no surgeries on this trip, just lots of time with a team of doctors who specialize in kids like Evie.   Its time for the best of the best of surgeons to see our girl, so we are making the trek mainly for one particular surgeon.  Thanks to grandparents watching three kiddos and a Ronald McDonald House saving a room for us, we have big hopes for this trip. 

 

   We'd love your prayers for...

~safe travels

~Evie's heart and anxiety with more testing and more appointments

~wisdom, discernment and heart of surgical specialists

~gentleness of medical staff anytime they interact with Evelyn

~no more kidney infections

~for Mark and I to have endurance in our faith, hope, emotions and attitudes as we continue navigating this journey

~continued medical miracles

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.

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! 

10 Things Adoptive Parents of Medical Needs Kids Want You to Know (NHBO Post)

Our plane from China touched down just five months ago. With our two newly adopted kids, both with emotional and physical needs, we stepped out into new lives, all things from before suddenly family history. Life now is both harder and more blessing rich. Six hospital admissions, two surgeries, and a thousand tests and appointments later, our hearts are a mix of weight and awe. We’ve had to hold our daughter down over and over again through IVs, blood work, MRIs, x-rays, sedation and medical probes at a time when bonding should have been our only concern. The beauty is that we’ve seen God meet us exactly where we’ve needed Him over and over in ERs, specialists’ offices and on our bathroom floor with medical supplies spread round. On a trek that we weren’t qualified to traverse, we’ve been carried.

Many of our adoptive friends share a version of this story, and if allowed to speak for them, these are some things we’d like for you to know.

 

1. Sometimes, “How is she?” is a hard question to answer. We’ve probably answered it at least five times that day at church, school or gymnastics. Spoon up some grace if we hesitate and fumble through a response while passing each other casually in a hallway. We might just not have the energy for a coherent, summed up response for medical issues that are complex and heavy on our hearts. Still, know your remembrance was appreciated.

 

2. Sometimes it’s easier to share medical updates on FB, a blog, or in group email updates. We do want to express our hearts, and these help us do that when we can string our thoughts together to share at once with everyone we care about. Most likely, we can’t remember who we’ve updated and who we’ve missed. We want you to know the latest medical details, and we deeply cherish your walk alongside us.

 

3. All the time, we need you to PRAY. Nothing is more comforting to us than knowing that our girl has an army of prayer warriors fighting for her health and heart. We’ve felt the covering of your prayer during surgeries and procedures, and it has carrying power. We are always ready with an answer when you ask, “How can we pray?” And it matters much to us when you simply say, “We are praying.”

 

4. All of the time, your messages, texts and phone calls are of high value. When you email us prayers, we’ve probably read them two or three times. We likely have listened again to your phone messages while waiting for a doctor’s update. They are instruments of God’s provision of peace. Unfortunately, our to do and to go lists are long, and the thoughtful responses don’t happen. Don’t give up on us. 
We need you more than ever.

 

5. Sometimes we’d rather just hear about you. If we tend to constantly push the conversation back in your direction, go with it. Know we appreciate your effort to ask about us, but we still want to know how YOU and YOUR family are doing. Our path doesn’t eclipse yours. Have a struggle or need to vent? Tell us. We can handle it.

 

6. Sometimes we worry that we are burdening you with too much medical talk, and we find ourselves pretending to be more positive than we feel. We don’t share because we’ve already shared so much. Our medical journey doesn’t end after a surgery. There are always appointments, therapies, decisions, more surgeries and more days of at home care, and we wonder how many times we can ask for your prayer. We wonder how many times we can tell you that we are worried and weary.

 

7. Often we hear, “Let me know what I can do.” Though so grateful, most likely we are clueless about how to answer. We appreciate your offer and likely need help, but probably don’t have the energy to let you know how. It is a gift when someone asks specifically, “I would like to help you. Can I babysit your kids for an appointment this week?” Or, “I am planning to bring you dinner. Does Tuesday work?” While an incredible blessing, being served over a long period of time is also stretching. We see the care overall as extravagant provision from God, but on an individual basis, we feel like a burden.

 

Read the rest at No Hands But Ours. 

PICCs and "Bips"

2 Weeks
1 Nasty Infection

1 Cancelled 10 day trip to Cincinnati Children's Hospital

2 PICC Lines

2 Hospital Admissions

2 Late Night ER Trips
5 Dr's Appointments

10 Days of IV Meds
2 Medicine Deliveries

1 Home Health Nurse

4 Dressing Changes
4 X-rays
3 Babysitters From Kentucky
10 Meals Delivered
10-15 Bags of Lay's Potato "Bips"
6 Weary Family Members

On Monday, April 7, we prepped a zillion suitcases to be loaded into our Cincinnati Children's Hospital bound van.  This trip had been planned, prayed over and emotionally prepped for.  Our plan was to see 6 specialists over a period of ten days. 

Bladder surgery #2, just two weeks behind us, my mom had just left, taking Sophia with her, with a plan to meet up.  As we lined up those suitcases, the urologist called.  10 minutes later, we were making  cancellation phone calls, repacking bags and coordinating childcare.  More infection and US hospital admission #5 (&6).

 Before long, with suitcases still lining the hallway, we settled into room 243 for 10 days of IV antibiotics, well stocked with Lays "bips".  (Thanks, Aunt Jen!)

Visitors arrived on day 2!  No picture evidence, but sweet Aunt Janie came all the way from KY to help out with the kiddos and encourage the patient.  Also, Evie's amazing pal, Lucy, and her fabulous momma came by to bring smiles. 

 The second floor nurses are all pals now, so they loved our girl well, and are familiar with her stranger anxiety. 

The perk to being a frequent flyers is that you know how to bust your kid out of their room, and where to go to find some joy and beauty. 

We LOVE our local children's hospital and appreciate the endless ways that they make families comfy.  We can't say that we love their sleeper sofas or their oddly chefy meatloaf, but have massive gratitude to the nurses, techs, doctors, and child life specialists.  The love and care they show over and over again, day after day is immense.

 

On Tuesday, it was decided that Miss Evie needed to be out of the hospital and away from further infection risk.  In went a PICC line, and she rolled out of the hospital late Wednesday in a red wagon. 

Her siblings were extra happy to have her home, especially her biggest fan, Sophia, who had been in Kentucky waiting for us to drive up for the Cincy trip.   

 It felt a bit like we were finished, and we were ready for a long snooze, until the doorbell rang with a big box.

Then our WONDERFUL home health nurse arrived for PICC training.  We have logged it as 1.5 hours toward our nursing degree. 

Every eight hours, we gloved up, flushed the line and gave meds, crazy grateful for medical technology and the comfort of home.  Only concern, Evelyn's PICC arm was one giant, NASTY red rash.  Looking back, we never should have brought her home, because Thursday night, she scratched the PICC right out, so off to the ER we went. 

By 10:30, she was admitted and they brought us a meal in a brown paper sack.  First thing we found as we opened it?  Well, Lay's of course.  The patient prefers them classic flavored, but was quite pleased with her late night sour cream and onions.  She may or may not have scratched off the PICC with full understanding that hospital trips equal Lays potato "bips". 

The next morning, I left her sobbing and scared in a scary room full of gowned and masked nurses and a doctor who sedated her and inserted a new line.  With one look at her arm, the PICC nurses determined that she had had an allergic reaction to materials used in the other line. 

Eventually, we rolled out in another wagon, and made it back home to our people, happy to have it behind us. 

 

 Unfortunately, behind us didn't last long.  Her PICC dressing filled with blood so we text a picture to our nurse, who told us to head back to the ER.

Thankfully, they had Classic Lays this time, and after a dressing change and another X-ray, they arrived back home at 5AM. 

 

Our second week was filled with lots of appointments, meds every eight hours and the gift of more meals from friends. The dressing got bloody a few more times and we waffled with the nurse about another ER trip, but finally used parent intuition and stayed home.  The PICC process takes time and we had to keep her still, but it was an easy process.  She even had a dose in carpool two times, with some Lays as a distraction!

 

 Finally, on Friday after a couple tests, the PICC came out.  We'd gone to battle with bacteria and won!  Though she cries with ever nurse and doctor, Evelyn has been through so much and is just used to these procedures, which sadly helps.  We freely admit that this two weeks was particularly challenging, but God met us EVERY day. It was exhausting, but all doable. The hardest part was seeing our girl deal with poking and prodding over and over again.  We looked into her face as she sobbed and held her down far too many times.    Thankfully, our girl is the toughest person we know and has now moved on to normal two year old fun with crayons, Elmo and bubbles!

Giant thanks to mom, Janie, Madeline, Aunt Jen, Angela and lots of friends for all kinds of care.