Officially a VEPTR Graduate!

After the Thanksgiving festivities had wrapped up, Anna was back to JMU and Jared would soon be headed back to CU Boulder for a few weeks until Christmas, Lilly and I hopped in the car Sunday evening and drove up towards Philly (avoiding Thanksgiving traffic by leaving late) and spent the night in Delaware for early morning appointments at CHOP for Lilly's 6-month followup after her last VEPTR surgery back in May.  (our originally scheduled followup appointment got shifted because Dr. Anari was on paternity leave!  So excited for his wife and him and their new little baby girl!)

Early Monday morning, we got new x-rays and spent some time with Dr. Anari reviewing them and talking about how Lilly has been doing.  The x-rays confirmed that she has reached skeletal maturity, that her remaining two VETPR rods are looking good, that her spine is, indeed, auto-fusing and therefore the ridigity of her curvature keeps her thoracic cavity adequately expanded without the third rod that they had to remove back in May.  Her declared her officially a "VEPTR Graduate" and feels that, barring any complications, loss of pulmonary function, or hardware malfunctions, she will only require annual check ups and xrays from this point forward! The rods will stay in as long as there are no problems, with no need for further expansions.

We next saw Dr. Mayer, the pulmonologist. Lilly's pulmonary function test (PFT) administered that morning showed that her pulmonary function, while low, remains stable.  Her lung capacity and air flow are still only about 30% of what they should be for someone her age and her size (based on her wing-span height, which is a good measure of what her height might have been without her scoliosis and shows that her scoliosis has really taken a good 8 inches off of her actual height).  But, her daily functioning isn't severely compromised by this fact--she was able to take part in a Turkey Trot 5K on Thanksgiving, walking and occasionally running, she does weekly horseback riding, and she rarely gets sick and recovers in a normal amount of time when she does, showing good pulmonary reserve.  We are grateful for the fact that she does so well considering how low her lung capacity is.  We know this is not something to take for granted as many of the kids with severe spinal deformities like Lilly have much more serious lung issues that can severely compromise quality of life.   Dr. Mayer also felt that there is no need for him to see her unless she exhibits any marked decline in pulmonary function, and that annual PFTs when she sees Dr. Anari will be sufficient to monitor her status.

  All in all, great news.  Praise the Lord for Lilly's official "graduate" status!  It was good to be at CHOP, though very weird to be there and not be preparing for surgery the next day!

Pulmonary Function Testing

Lilly with Dr. Anari

Sleepy girl as we arrived to CHOP that morning.

A dreary morning, but CHOP is always bright and cheerful!

Giving Thanks

What a wonderful Thanksgiving we enjoyed this year!  Thanks to my brother, Justin, his wife, Lita, and their lovely kids, we had a warm  and festive and  yummy Thanksgiving.  I am grateful my parents could make the trip down to stay at Justin's for a few days, and we got to enjoy two days together. 

And, it was a joy to have all my kids at home together--Jared and Anna both home from college for a week and the younger two having 3 days off from school.  What a gift to have some family time.  

Posting, Processing, Prayerfulness, Purposefulness

In recent months, I have spent much less time than previously on social media.  I knew in my heart that too much of my time was frittered away scrolling, and--as much as I love keeping up with my friends and family and sharing about our lives in that way--I needed to guard my time well.  Life is precious and short, and there are so many things that vie for my eyes, my mind, my heart, my time, my attention.  I wanted to be sure I was giving myself to the things that matter the most.  Also--with subtle messages, some good, some not, constantly flowing through those same social media outlets--I also wanted to be sure the things that are shaping my thinking and my emotions are the right things.

It has been a blessed time of mostly being off of social media, just popping on now and then if I need to broadcast something or check on someone.  I have been more productive in my days--doing things more intentionally.  Even so, time still always seems short for the many plans and purposes I have.

One thing I'm realizing through this is that posting on social media used to provide for me an outlet for sharing how I'm doing, how WE'RE doing and for feeling connected with others. In addition, for me, some therapeutic processing happens when I can boil down *how I'm doing* into a quick social media update.  So this time away has forced me to take this processing into God's presence in prayer.  I have increasingly turned to Him to talk about how I'm doing, discern where I'm falling short, where I'm following His lead, where my activities and actions and attitudes are in line with His good purposes and plans.

It has been a blessing.

I'm grateful.

And I'm hopeful that I can still use words now and then for some therapeutic processing of life here on my blog, which (perhaps ironically!) I'll happily share on social media.  The kinds of words I'll share here will be, undoubtedly, more thought-through, and more worthy of my time and your time than any quick Facebook update could ever have been.

The Mixed Emotions of a Hard Road Ending

Bless the Lord, Oh my soul, and all that is within me, bless His holy name. Bless the Lord, oh my soul, and forget not all His benefits.” Psalm 103:1-2

 As promised, I have taken some time to bring my reflections and feelings to words on the screen.  And, as always, taking time to write provides my own little therapeutic vehicle to process life.  Thanks for tagging along as a spectator on my therapy session as I explore the emotions that swirl as this portion of this arduous road—the bi-annual VEPTR expansion and revision surgeries--comes to an end (read more about that here).

The path we have walked medically with Lilly has been arduous, involving surgeries 2-3 times a year.  Before I proceed, let me make it clear that I am aware that there are many people who have walked, are currently walking, or will one day walk MUCH more difficult paths, some with outcomes that are heart wrenching.  In between our surgeries, we usually had a brief period of time where "normal life" without prepping for an upcoming surgery or healing from the previous one was taking place.  I am grateful that our path—while arduous—has a positive outcome. The Lord alone knows the plans He has for each of us, and He gives the grace and strength to live those plans out, whatever they look like for each of us.  The verse from Jeremiah 29:11: “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future” resonates with me, especially since looking at this verse in the context of the entire book of Jeremiah makes it clear that these words were spoken BEFORE God’s people were sent into exile—a time of great hardship and punishment—prophesying the restoration that God had in mind all along.  Plans for our good and for a hopeful future sometimes involve times of hardship along the way, none of it a surprise to God.

Therefore, I can embrace this arduous road, knowing it was also a God-ordained and God-directed means of showing His grace, His power, and His provision.  It has been His tool of refinement in our lives and hearts, used to build our trust in Him and train us to model our hearts, affections, and actions after His. And it was literally the means by which Lilly was given the chance at longevity and good quality of life.

Musings on the Miracle of Lilly

The end of this road arrived a little earlier than we had expected.  You can read that back story here.

On our 3-hour drive to Philly in the wee hours of Monday morning on May 15^th, Lilly and I were listening to an Adventures in Odyssey audio drama series depicting the life of a courageous polish social worker named Irena Sendler who risked her life to rescue orphaned children living in the Warsaw ghetto during World War II.  During one of the more intense segments of this audio drama, a Jewish mother was having to give up her youngest, who was malnourished and ill and would surely die if he stayed with his family.  Irena acknowledged during this scene that this woman loved her child so much that she had to make the terrible decision to give him up.  Driving across the bridge from NJ into Philly’s university district as we listened, I couldn’t help but reflect—the day after Mother’s Day—upon Lilly’s birth mother who made the choice to relinquish her newborn in an act that I choose to believe was made out of love because she knew Lilly needed medical attention that she could not receive in China.  The fact that this same child and I were en route to one of our nation’s premier children’s hospitals to receive another in a series of life-saving surgeries just made me tear up as I drove—knowing that God had led her to us, to all of this hard road. What a privilege to be a part of that plan.

When we adopted Lilly, we knew she had a severe spinal curvature.  We knew that, without treatment, her life would be of poor quality and short duration.  We knew that medical treatment options existed in the US, although—because we were new to this world of congenital scoliosis and thoracic insufficiency syndrome--we had no idea what life would look like as we entered into the world of special medical needs with faith and trust and a healthy dose of trepidation. 

These were the first photos we received of Lilly when we were
considering her adoption.

Lilly truly is a miracle, surviving nearly 3 years of malnourishment in an orphanage, being able to walk and move normally with a split spinal cord and severe spinal curvature, being able to function and breathe with severely compromised lung volume and air flow, and enduring so many years of surgeries, radiology studies, anesthesia and sedation, needle pokes, infections, tests, and hospital stays.   

She has been with us for 10 years now, and she has been undergoing regular surgeries for nearly 9 of those years (starting with her first surgery—-a spinal cord de-tethering surgery at University of Alabama Birmingham—in September 2010).  


We do not take this miracle for granted.  These surgeries have allowed her thoracic cavity to remain open and stable as her body grew, enabling her lungs to grow and function more effectively, literally giving her room to breathe.

This was the before (r) and after (l) X-rays from Lilly's VEPTR implant surgery in February 2011,

when she grew 3 inches in one day.  

Musings on Secondary Gains

For the largest of her surgeries—the spinal cord de-tethering, the initial implant of her VEPTR hardware in February of 2011, one of the washout and hardware removal surgeries after her first infection later in 2011, and the re-implantation surgery in April of 2012–Tom was able to be present, and we together weathered the pre op fasting, the waiting rooms, the hospital living, the praying, the caregiving.  Those times it was comforting to me to have Tom there—his presence, his support to me emotionally, his medical expertise all making me more at ease.  I cannot imagine having to walk this road without him, especially those more intense surgeries and hospitalizations. 

But for most of these surgeries, it has been Lilly and me traveling to Philly alone while Tom presses on with excellence to manage his own full plate at work and cares for those at home in my absence.  Mostly it has been me waiting in the waiting room alone, suiting up to go into the OR and sing her to sleep alone, tending to her in recovery alone, enduring the “hospital sleep” alone, working with the nurses to ensure good pain management on the floor alone, and finding ways to help her make the most of hospital time alone. 

Such times of solitude and physical and emotional toil have had multifaceted results.  First, the many mother-daughter trips to Philly have provided a special time of bonding that Lilly and I have both cherished and which Lilly sees as one of the silver linings of having to have regular surgeries.  These surgery trips have also made me stronger than I knew I could be, brought my selfishness to glaring light and trained me in sacrificial love, made me more attuned to Lilly’s needs, more knowledgeable about medicine and hospitals, and more comfortable in uncomfortable settings involving physical pain and suffering for those I love.   

The “waiting room” portion of these trips—that period of time when Lilly is in the OR and there is nothing to do but wait and pray (which I have always been able to do with a supernatural calm and peace, trusting God and trusting our excellent doctors)—have provided unique times of solitude several times a year during which I am forced to withdraw from “normal life” and its responsibilities and reflect on the bigger picture.  It’s been a rare chance to process life, write on my blog, or meditate and pray more deeply.   I’ve written about that before here.  During those times when Tom was with me, the waiting room was the perfect place for conversation at a deeper level with one another.  Indeed, it was in the waiting room during Lilly’s big VEPTR implant surgery that Tom turned to me, saying “I think, as long as Lilly comes through this OK, we should start to pursue another adoption” and our pursuit of adopting Bella began.  (You can read more about that here!)

And, though I’ve said I was alone, this was only in a physical sense.  I’ve never seen or felt more clearly God’s presence and His care in such tangible ways as I have in these times—through the loving care, support, and prayers of so many dear family members, church family, friends, neighbors. Social media and texting truly helped me to know you were all there, lifting us up, cheering us on.  Special visits from friends and family members at the hospital over the years.  Special gifts for Lilly.  Special care for Jared and Anna, who were so often left behind. And the practical support over the years—childcare, dog care, meals, rides, special outings with Bella—was invaluable.  Thank you, Lord, for using your children to be your hands and feet.   And thank you to those of you reading this who were a part of that essential support team. You know who you are and you know I love and appreciate you each.

Musings on the Losses

So, with it being an arduous road, why mixed emotions?  Why any bitter mixed with the sweet?  Because this road—the surgical VEPTR journey—coming to an end marks some losses.  We will miss CHOP, and its amazing people.  CHOP has become for us a home—a place of comfort where the people care about each other.  Literally every single person we have encountered—the doctors and nurses, techs, child life workers, cafeteria workers, janitors, EVERYONE—has truly cared about Lilly’s wellbeing—physical, emotional, and mental.  These people not only gave all their expertise and wisdom and skill to care for her body, they worked hard to connect to her heart and make her feel comfortable.  When she was new to this journey, even the sight of someone in a white lab coat or scrubs would elicit tears of terror.  I would have to literally leap to her bedside to assure her I was nearby anytime someone entered our room during the night.  Today she sometimes is so calm and quiet when nurses come in to check her vitals or administer meds at night I barely wake up.  If you know Lilly well at all, you know that she is not always quick to warm up to people, even people she sees regularly.  But there have been a handful of nurses that have really earned her trust and her love and Lilly will carry on lengthy conversations and share life with them.  SO sweet to see. 

Not just the medical staff, but the child life staff is too wonderful for words.  So cliché, I know, but true.  They excel at their jobs—to make a hospital stay fun, take away some fears, and allow kids to be kids even in hard circumstances.  They have done whatever they can do to keep Lilly calm and entertained each time we are there—sometimes inviting her for craft time or music therapy, sometimes bringing a craft to the room, sometimes sitting with her to use an iPad with photos and sound files to explain what an upcoming MRI might be like for her without sedation.  Another of the silver linings of surgery in Lilly’s mind has been the excuse to do fun crafts all day long! So God really just put the icing on the cake as we were departing CHOP from her final surgery, suitcase zipped and wheeling behind us, as we entered the atrium to find a huge child life event celebrating trauma survivors and offering several tables filled with craft projects with many of our favorite child life friends running the event.  It was like God gave Lilly one final craft hurrah as she graduated from CHOP. 

Graduating from the VEPTR program also marks a physical milestone for Lilly, which in Lilly’s mind, means a loss.  It means she is done growing.  She began this journey as a tiny 30-pound 3-foot-tall 4-year old, and she is now 13, still tiny at 4 foot 3.  Lilly longs to be a taller human being. In my heart I know that she may be tiny, but she is mighty.  If height were dependent on strength of character, she would be a giant.  And I am confident she will do mighty things that God has planned for her.

Looking to the Future

The ending of this hard road is like a graduation without a ceremony. As we graduate,  I am grateful that graduating doesn’t mean the ending of the friendships with other VEPTR families that we’ve met along the way who are literally scattered across the country. The love and support in the community—both online and, when we’re able to make it work, in person—is such a gift. I intend to stay connected to this community.  We will rely on those ahead of Lilly on this journey for advice for her future, and we will cheer on those coming up behind her, offering our own expertise and experience. 

We will also be back to CHOP at least annually to just check in and make sure she’s doing all right and her remaining hardware is intact.  I intend to see if there are ways we can somehow serve CHOP during these visit.

I also intend to find other ways to have mother-daughter bonding time that doesn’t involve anesthesia!  I am confident we will find a way to incorporate some crafting into these times! J And I will have to creatively find ways to withdraw for those times of solitude that allow me mental and spiritual space to reflect, breathe, and write.

Some things I am grateful that the future will no longer hold: I will not miss the logistical hurdles I maneuvered when planning these medical trips and absences from normal life.  I will NOT miss not getting to be there for after-school homework time with Bella, or concerts or awards ceremonies or other special occasions.  I will be happy to not have to celebrate any other family birthdays from a hospital room as we did for at least one of Anna's birthdays.  I am grateful to not have to find substitutes to fill my classes, or to rely on friends, neighbors and family members to help in so many ways. I am grateful Lilly will not miss out on swimming or even just "normal" bathing while incisions heal.

We may just need to hold a “graduation party!” A season of our lives that, at the outset, seemed endless is ending.  Lilly’s life as a VEPTR graduate is beginning, and the future holds its own unknowns and scary possibilities.  Knowing how our sovereign Lord has ordained our steps and faithfully provided for each of our needs gives me comfort for the unknowns ahead.  Thank you, Lord, for your goodness and grace to us. 

All the hospital bracelets.

A Gallery of Lilly's Medical Care Through the Years

A Gallery of Lilly's Medical Care Through the Years

Surgical VEPTR Journey Coming to a Close

I’m sitting here in Lilly’s hostpital room after surgery number 21 yesterday.  I have so many thoughts and emotions running through my heart and mind as I sit here and as I sat in the waiting room last evening while Lilly underwent what is likely to be her very last VEPTR surgery.  I was too weary last night to try to capture all the thoughts and emotions and turn them into words, but I would really like to try this morning, while we are fresher and while Lilly is resting fairly comfortably.

Let me back up just a little.

Last October, after Lilly’s last expansion surgery, Dr. Anari let us know that—since Lilly had nearly reached skeletal maturity—she would only have one last expansion surgery, likely to happen late in summer of 2019 to give her time to complete any growing her body still wanted to do.  Hearing that there may only be ONE MORE surgery after so many years of this life was such a surreal thing.

Fast forward about 5 months, and we noticed a spot on Lilly’s lower left side of her back where it looked like one of the anchors for her rod was eroding through her skin from the inside out.  This same spot had been a problem a few years ago and had required and extra clean out surgery and has necessitated plastic surgery to be involved in nearly every surgery since to ensure adequate coverage over that anchor.  So we kept a close eye on the spot, and even made an extra trip up to CHOP in April to have Dr. Anari take a look at it.  We decided to keep watching it and waiting, hoping it would endure until her expansion surgery a few months later.

Last week, however, the spot was getting markedly worse, and by Friday her hardware was clearly visible just under the thinnest layer of translucent skin. I had been sending photos regularly to Dr. Anari’s nurse practitioner, and she called Friday to say that Dr. Anari wanted her to come up Monday morning and probably surgery Monday afternoon or evening.

After a full weekend of fun activity, we hit the road early Monday morning (5:30am) to see Dr. Anari in Clinic at 9am.  One look told him that, yes, the time had come to address this spot.  His plan involved removal of all the hardware on her left side Monday afternoon or evening as an “add on” to the OR schedule. He believes she has enough auto-fusion of her spine that her body will be ok without that rod and he will not expand the right side any further since expanding unilaterally would not be beneficial without the supporting structure on the opposite side.  He'll monitor her to see how she does without that rod, and, as long as her curve doesn't progress, she'll graduate to annual visits for monitoring. The bottom line--something Lilly and I both slowly processed throughout the day as we waited--is that this would today could very well be Lilly's FINAL VEPTR surgery.

Lilly with Emily, Dr. Anari,s nurse practitioner 

We spent the day distracting ourselves at CHOP by hanging out in the atrium, and, once we were in a room, enjoyed a visit from our friend and fellow VEPTR warrior girl, Mary, and her sweet momma, Naomi, and her grandma too. One of our favorite child life workers, Elizabeth, also hooked Lilly up with a lego set to help pass the time.  

Mary brought Lilly a rainbow unicorn.  SO sweet.  

We love the beautiful atrium.

We have kept a "hospital caregivers' guest book" for the past 6 years (a few years into our VEPTR journey) and we realized yesterday morning as we checked in to see Dr. Anari that it was 6 years to the date that we had begun using the book!  This is Lilly's first entry--her depiction of herself with me).  

Dear ones who understand this journey and cared enough to stop in to help pass the time while we fasted and waited. Mary was here for her pre op appointment (surgery next week) and was sure to badger Dr. Anari about making sure he took care of Lilly today! :) 

There was some question yesterday as to whether her surgery would proceed that day or if we'd have to wait overnight.  The Lord answered our prayers by allowing it to proceed Monday night after a very long day of waiting and fasting.  Lilly was a trooper throughout it all. We were so grateful to receive word about 5pm that it would proceed as we'd hoped.

THis was early in the day, as we were just arriving to CHOP after a dreary, early drive.

At last, it was go time.  It was such a different experience being admitted to a room before surgery, rather than being admitted through the OR.  They brought her from her room to the pre op area, and, as usual, I was able to suit up to go back to the OR with her and sing her to sleep.  She fought the sleep and I had to sing nearly two whole verses of Amazing Grace before she began to drift off.

Dr.Anari is such a wonderful man and we are so grateful that Dr. Campbell hand-picked him to take on his patients.

At Lilly's request, we took a sad photo--because of her mixed feelings about being done with surgeries 

It was a very different experience having surgery so late in the day.  I was ravenous and exhausted from such a long day, so once she was in the OR around 6pm I went down to get some dinner before the cafeteria closed.  I then made my way back to our car parked at the Buerger CEnter across the street to retrieve our luggage and Lilly's entourage of stuffed animals and blankets.  I had some time in the surgery waiting room to rest my eyes and do some reading.

It was around 8pm that I got word that the hardware was out and they would be closing.  It was around 8:45 that Dr. Anari came out to give Tom (by phone) and me a report.  He was able to successfully remove the hardware on the left side without too much "digging" in her pelvic bone, and he had to leave in place a hook on her ribs on the upper left that would have been very difficult to get out and leaving it in has no risks.  He had her hardware sanitized and packaged up in a Ziploc for us to take as a souvenir!  We'll now watch and see how she does with only the remaining rib to rib and rib to pelvis rod on the right.  As long as she's doing all right, we'll be looking at only annual trips to CHOP for monitoring, and, Lord, willing, no more surgeries.

I was able to get into the recovery room to be with her once she started waking up, around 10pm.  She was so sleepy in the OR they actually had to give her Narcan to get her to start waking up.  And because of that, they were hesitant to give her any additional narcotics for pain initially. As a result, when she woke up, she was in intense pain.  It was difficult to watch her in so much pain.  The recovery room nurses were great and quickly got anesthesia to order her some pain medication.  The balance became keeping her pain managed while also trying to keep her pulse ox sats up. Eventually, we found the balance and got to go back to our room with nasal canula O2.  It was after midnight before we were starting to settle in for the night, though dosing schedules and vital sign checks meant that we really didn't get to settle down for sleep until closer to 2am.

Hospital sleep is never good, but as far as hospital sleeps go, we did all right.  When Lilly has daytime surgeries, she often awakens the next morning very very early, but this time she actually was quite sleepy until after 8am.  It felt good to rest, even if it was sporadic.

Today, she is still in quite a bit of pain so we're keeping pain meds on a schedule.  She has been nauseous on and off, so the combination of pain, fear or pain, and nausea has kept her in bed so far today.  We're going to try getting her up and moving soon--I think she'll feel much better once she starts moving.

THe plan is for discharge tomorrow (Wednesday).

I'm going to wrap up this post here, and do another post at a later date with some of the emotions I'm processing.  It will take me some time to find the words.

One thing I need to say is that, even though I'm here alone with Lilly, I feel as if I have a team of cheerleaders and prayer warriors supporting us.  Thank you.