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!

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

One Year Ago...

...Tom and I were in China, getting ready to meet Isabel for the first time. 

I'm doing much thinking these days about the difference adoption makes. 

Feeling a blog post coming in.

Be forewarned.

Happy Chinese New Year!

新年快乐！

VEPTR Expansion #3 and Thanksgiving Wrap Up

Lilly successfully underwent her third VEPTR expansion surgery on Tuesday the 20th this week.  She and I drove to Philly from VA on Sunday afternoon--stopping briefly to visit with Justin, Lita, Joshuan, Abby, Delaney, and Elly on our way north--checked into the Sheraton University City Hotel that evening ( no rooom at the Ronald McDonald House, unfortunately).

Monday was our usual pre-op day with a clinic visit with Dr. Campbell, X-rays, lab work, and a screening visit at the anesthesia resource center.  Different this time was an additional clinic visit with Dr. Carrigan to follow up on LIlly's weakness and lack of flexibility in her right hand that we discovered over the summer. Dr. Carrigan is a hand surgeon who works with Dr. Campbell and he had recommended the EMG test Lilly undewent in October.  Dr. Carrigan was happy with the treatment Lilly has been receiving for her hand in her OT visits, and will followup in 6-12 months to make sure things are still looking good.  Overall, the day went smoothly, and Lilly and I were done in time for a late lunch in the cafeteria and an afternoon at the Please Touch Museum, an awesome children's museum just a few miles from CHOP.

We indulged in Chinese food for dinner and did homework in our hotel room before proceeding with our usual pre-op bath and wip down with the special antimicrobial wipes thay provide for us each surgery.    Our show time for Tuesday wasn't until 1pm, so we made plans to spend the morning doing school work, sipping apple juice, watching movies on the iPad while Mommy exercised in the fitness room, sipping more apple juice, and then walking to downtown Philly to a Barnes and Noble bookstore to see Nana's new book, Agenda 21, on the shelves for the first time.  We bought a copy for Dr. Campbell as well.  How exciting!  Then we walked back to the University/Hospital district of town just in time to get our car from the hotel and get ourselves to Surgery Reception at CHOP.

I was excited to meet another VEPTR mommy in the pre op area--we had "met" on the VEPTR family Facebook page and her daughter has been at CHOP for about 10 days due to an ongoing infection.

Our wait was smooth and pretty speedy, and by 3:15 Lilly and I were headed back to the OR where I was again allowed to "suit up"and hold her while she breathed the gas from the ask to help her drift off to la la land.  Lilly comments contstantly that the surgery seems so very fast to her because she ggoes to sleep and as soon as she wakes up, it's over!  Not quite as fast for mama, but this time actually was pretty speedy.

I got to finish reading Agenda 21 in the waiting room--a wonderful distraction from the business of waiting--and Tom and my other 3 kids arrived just as I was finishing up the book.

Lilly woke up ravenous and spunky.  She devoured everyone else's dinner since the hospital didn't uet show her in the system and we couldn't order her a dinner tray.  She was happy to see her siblings and was feeling pretty good--other than being itchy from the morphine--thanks to good pain meds.

After Tom and the other kids departed to finish their drive north to Grammy's house, our night was spotty--hospitals simply aren't a place to get good sleep.  She was itchy and had tummy aches.  The next morning we dealt with nausea and pain and continued hives and itchiness.  She wanted to go for walks and play in the play room, but her nausea made both of those things short-lived.   We were thankful for the zofran the resident ordered for her, and by 3:00pm, we were discharged and ready to do battle with Thanksgiving traffic to get to Grammy';s house.

The drive, usually a little over an hour, was closer to 2 hours, but we made it.

So good to be in a place where I could rest and decompress.  LIlly quickly settled into playing with Isabel and her cousins Peter and Naomi, and it felt good to be with family.

Our Thanksgiving was wonderful--as always lots of delicious food and many many people with whom to share it.

Yesterday, we enjoyed a beautiful day to get out an dhike at a local park called "ringing rocks" where the rocks make beautiful tones when struck with a hammer.  We had more good food with a few of Tom's siblings' families who weren't present for Thanksgiving dinner.

Later today, we'll pack up and head home.  I know Lilly and I are both ready to get into our own space and our own beds.

I am ever so thankful for the wonderful care that LIlly receives at CHOp, for the love and care of family, and for the grace of God that washes me afresh each day.

So beyond me.

Today was one of those days that reminds me that, even when I might feel as if I have some semblance of control over our days, it's really truly out of my hands. 

Today, day 17 since Lilly's expansion surgery, she began to run a fever. 

This whole week, we have been a little suspicious that something might be brewing.  Her incisions started looking a little funky early this week and started even having a bad smell (which reminded me of how they smelled when she had her last infection).  She also began having more pain, night terrors, and a bizarre itchy red rash (some like hives) all over her body, mainly on her legs, sides, and back.

Not liking what we were seeing, we had some blood work done on Wednesday and I kept the doctor's appointment for her on Thursday that I had almost cancelled when the doc late last week was able to put in some referrals (for other issues that have come up recently with her right hand function and strength and possible neurological problems) for us without actually seeing Lilly.

Of course, the day you go to the doctor is the day that everything looks great and they wonder why you are sitting there in the doctor's office...

• The blood work actually didn't look terrible--white count was normal and CRP was slightly elevated but nothing like how high it went during her last infection and could totally be attributed to recent surgery. 
• Her incisions actually began to look better because we had removed her funky steri strips and placed a fresh dressing over the incisions.
• Her rash was nearly gone.

So, of course, the family practice doc we were seeing (and Tom and I as well) were really no longer concerned about infection.  Ready to move on into the rest of our week--which included back to school orientations for all of the kids & Jared's marching band's first football field show--as well as get ready for next week--which holds big things like 4 kids starting 10th grade, 7th grade, 1st grade, and kindergarten as well as Chinese school for 3 girls on Sunday afternoons. 

(Oh, and not to mention my starting in my new role as a Core Group leader for Community Bible study, and Tom and me beginning to get the ball rolling for co-hosting/leading a new home group from church, and continuing to do my marathon training--only 5 weeks to go!--and hoping to up the intensity of all of my workouts now and maybe shed a few of the stubborn post-adoption, post-surgery pounds that are ignoring my attempts at self-discipline in eating and intense fitness regimen...and hoping to maybe even start teaching spin classes at a gym again...and...and...and...but I digress...)

Today, however, concerns quickly picked back up.  Lilly's sleep patterns have been all over the map this week. This morning, however, when she slept till 9:30am, barely touched her breakfast, wanted to be carried to and from the park and barely played at the park, and then just wanted to be held after lunch, I knew something was up. When she complained that her head hurt and her shoulder and arm hurt and she felt warm, I began the obsessive-compulsive temperature-taking. The first two times I took it this afternoon, it was normal. Then it began to climb. Highest today hasn't been too high...101.7...but anything above 100.4 is of concern when dealing with possible post operative infection.

So, making this long saga a little shorter...after talking with Doctor Campbell, we filled some remaining refills on her oral antibiotics from the last infection and started her on them this afternoon. She should start to feel better in a few days, and hopefully can start school on time without missing a beat.  Now we wait and pray that this infection has not made its way to her hardware, where antibiotics are ineffective. 

In the category of brutal transparency:  Did I mention this is not how I had planned to spend our Labor Day weekend before schools starts?  And did I mention that not only do I feel immense concern for Lilly but also pangs of mother guilt when Isabel suddenly feels the need to point out every scratch and owie she might have on her legs or arms and whimpers and whines when I carry a weary and feverish Lilly around but can't pick her up too?  I might also add that feeling so very out of control and inadequate for such circumstances just makes me want to eat chocolate--or maybe have a glass of red wine--and that's really not what will make those stubborn pounds slip away.  Clothes fitting too tightly doesn't enhance my mood at all either. 

Yes, it's all beyond me.

Thank the Lord He's got it all in His hands and nothing takes Him by surprise.  Earlier today, when Lilly's tylenol had kicked in we walked to the park.  On the way, she wanted to sing together.  When she asked me what I wanted to sing, the only songs I could think of were "When I am afraid, I will trust in you," "Our God is so big..." and "Jesus Loves Me."

Indeed, "they are weak but He is strong." Personalizing it a bit, I am weak, but He is strong.

The name of the LORD is a strong tower; the righteous run to it and are safe.   Proverbs 18:10

The Plague

So so good to be home.  So so good to sleep in our own bed and drink our own coffee.   So good to be without ICU IVs, monitors beeping, X-ray machines rolling through, sweet nurses taking vitals, and residents making rounds in the wee morning hours after rough sleep on a hard bedside bench.  Too bad we are as sick as dogs here.  At least we get to be sick at home. 

So, backing up a bit (and moving away from the little pity party--sorry), I know my last post said we might be discharged early this week. Dr. Campbell saw us last thing Friday afternoon, explained we'd do CT and X-ray on Monday and after he'd looked her over, she might go home Monday or Tuesday.

Lilly, however, had other plans. The PICU team that came through on Saturday morning took one look at her running around playing with Bella, totally free of IVs, O2, and any other type of tube or attachment, and said "this child does not belong in the hospital, let alone the PICU. It's orthopedics' call, but you may get to go home today."

We were not going to turn down the chance to break free, and were thrilled when, by 9pm or so, our amazing PICU team and the ortho residents had managed to get us in for CTs & X-rays, changed dressings, and written discharge orders. By 11pm we were at Grammy's house. Lilly played happily all day Sunday with her cousins, riding tricycles, swinging on the swings, and playing around the house. When we wanted her to "rest," we let her watch some TV with Bella. Bella fell asleep; Lilly did not. She's tough.  And apparently not tired.

Monday morning early, we headed back to CHOP for a quick stop in Dr. Campbell's clinic to get clearance to head to Virginia (and schedule her next expansion--August 14th).  By the time Anna was getting off the bus from school, we were walking in the door at home.  Aaaah.  Home.

But, yes, as I mentioned, we are sick.  It started with me--a little tickle in my chest and small cough on Friday afternoon and into Saturday.  We were discharged late Saturday night, and by the evening time I felt miserable.  Feverish, chills, painful cough, body aches, headache.  Good to be away from the hospital and with family members that wanted to take my little ones from me and play so I could go nap.  Bless their hearts.  I felt so miserable that every time I would lay down for a nap I couldn't help but cry a little bit as I fitfully dozed.  Yuck.  Fevers up and down Sunday and through Monday.  Tom succumbed MOnday afternoon at work and headed home to bed as well. 

My folks, who were going to leave once we arrived home MOnday but decided to stay to help when they saw how bad I felt, agreed to leave at my urging once they knew Tom had it too.  Not worth the risk after my mom's lengthy pneumonia hospitalization in Florida last year following Lilly's surgery. 

Today, Lilly (who has had a little cough for a few days) started with the fevers and the more violent coughing as well.  She is still tough, but it's clear she's not feeling great. 

We're just hoping Bella and Jared and Anna (and the wide swath of people--virtually dozens of family members--we have encountered between CHOP and home) do not acquire this bug either. 

Why is it I always find myself saying "once ___ is over things will get more normal again...?"  And yet, I'm saying it again.  Once we are all well and Lilly is back to school, we can get back into the swing of things again.  For at least 7 weeks until summer vacation starts--yikes! 

Oh, and BTW, you need to stop by here and read my Mom's take on being in charge of my children last week...she is hysterical.  She made me laugh so hard I couldn't stop coughing.

On Solid Ground

What an amazing day today.

First of all, thanks to the many of you who sent me messages or left FB comments of encouragement--you're awesome. And thanks to those of you who were prayer warriors for all of us today. It is so evident to me that God is hearing and answering our prayers.

It feels good to be off of the rollercoaster, standing on the solid ground of truth. And it feels good to have much to celebrate today:

It is exciting to watch Lilly standing on solid ground, supporting her own weight, and even walking from the room to the play room several times today. She spent much of the day out of bed, and--despite fears overnight that her breathing was not deep enough and her lungs were suffering--she nearly weaned herself entirely from any suupplemental O2 this afternoon, and is on a minimal amount of nasal canula O2 flow tonight just because she tends to desat at night.

She had one of her iVs and her last remaining drain removed today. Each tube removed from her body warrants a little happy dance as that is one step closer to discharge.

She is no longer on regularly scheduled pain meds, but on an as-needed basis, and has been able to stretch out those doses as well.

And last, but not least (forgive me if it's TMI but if you'd had a child go through major surgery you'll understand what a big deal it is) she had her first post op BM today. Hooray. Things are moving.

For her part, Bella had a good day as well and was SO happy to have her sister out of bed an in the play room with her. And you know Lilly is feeling better when the sibling rivalry kicks right back in as well. We spent much time today in the play room making crafts, bowling, and making bead necklaces. They also had a tea party in the room and played with their Bitty Babies (thank you Aunt Wen for passing along Kaylla's old Bitty Baby for Bella!).

And we enjoyed a visit from Grammy and Pop Pop. It's always good to have folks come see us here!

We have light at the end of the tunnel. Dr. Campbell is really happpy with Lilly's progress, and has a few milestones for her to meet but the "D" word (discharge) did come up today...possibly early next week. We need some followup X-rays and a CT scan,and Lilly needs to meet some PT milestones (we'll work on stairs tomorrow).

All in all, everyone's spirits were much better today. Here's hoping for continued progress over the weekend and a speedy return HOME!

Would Someone Please Turn Off the Ride?

...I think I'd like to get off.

Today has been a hard day.

Let me start by saying--and reassuring you--that Lilly is doing great. She is amazing and is making fabulous progress in her recovery. Bella, too, is amazing and is doing a great job of rolling with things here, despite having minimal understanding of what we are doing and why, showing amazing amounts of trust and--even though we sometimes expect even more--great amounts of patience with this whole experience. These girls are amazing. My older two back home--according to Nana and Pap Pap (who are also wonderful)--are amazing too. And I have an amazing husband who is doing his best to make sure Lilly's medical needs are being met well, care for Bella at night, stay plugged into work as much as possible while we're away, and make sure I am doing ok through this experience.

It's this mama that is having a hard time.

A few weeks ago, I alluded to a yet-to-be-written blog post about feelings of guilt and feelings of failure.

Those are two huge emotions. They plague me frequently. Especially lately.

Today was one of those days. Because Bella is pretty quickly bouncing off of the walls in this hospital room, I have felt compelled to get her out of the room to the play room or to roam the hallways or the sidewalks outside when she and Tom are at the hospital during the day. As a result, I have been missing much of Lilly's care and the medical discussions surrounding it. Tom, being a medic, is the better one to take part in these discussions (even though I like to pretend I understand what they are talking about). So I feel like I am not an integral part of Lilly's care and surely Lilly must feel like her mama no longer cares about her the way I used to. Those feelings were affirmed today when, upon my return with Bella after wandering around the hospital for a bit, Lilly declared that "I like Daddy better than you. And I want him to sleep here with me tonight. I don't want you."

Ouch.

Yes, I'm the grown up, and I totally knew what was behind those words. I didn't outwardly react to her words, but simply said "well, I still love you and am glad I can be here with you even though it's harder for me when I want to help you AND Bella." But her words cut into my heart. (side note: I am sleeping at the hospital tonight...as Bella and I were packing up to head out for the evening--and I had reached a place of peace about that prospect--Lilly realized she didn't really mean what she had said and was afraid NOT to have mama here.)

At the same time, when I am in the room and Lilly is needing my attention (and that of her daddy and all the nurses and a crowd of others--as was the case today when her O2 sats rapidly fell through the floor and she was in sudden, excruciating pain) I feel like poor Bella is left to sort of sit quietly in the corner, eating whenever we remember to feed her and whatever we manage to scrape together for her between cafeteria runs and snack bags and the many leftovers from Lilly's tray that she barely touches. It makes me feel like Bella surely feels like a second class citizen in this family at the moment. Even though Bella cannot articulate her feelings in the same way that Lilly can, her nonverbal communication of her feelings is increasingly clear to us.

And in the background of all of those emotions are the ones I feel when I think of my other two kiddos at home whom we left behind for 2 weeks just the month before last, and who are, once again, left at home without mom and dad. Not to mention the feelings of guilt associated with expecting SO MUCH of our extended family during these frequent occasions.

Hospital living is hard. Parenting virtual twins--one of whom is still learning our language and developing age-appropriate skills and behaviors--is hard. Being away from older children is hard. Commmunicating well in a marriage relationship through all of these circumstances is hard.

And so it is time to switch gears...riding the rollercoaster of guilt and failure is no fun and is just not right. Instead, I am will choose to do as Paul instructed: "Rejoice in the Lord always...do not be anxious about anything, but in everytthing, by prayer and supplication, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

So let me express my thanksgiving:

Lilly is recovering so very well. Her pain has been managed really well (love the pain ball!), she is able to sit up with a little dizziness, and today she even stood up and took a few very small steps toward me. She had her chest tube removed today and is slowly being weaned off of her O2--all wonderful steps toward going home.

Bella is doing better than I could even have imagined with all of this. And she is totally charming all the nurses. And our ICU room us directly across the hall from the play room. How awesome is that?

The older kids are faring very well! And I love that our family members are getting to know our kids so much better by living with them for extended periods, especially because the US Air Force is quite likely going to move us far away from family once again in the next year or two.

Tom and Bella have a wonderful hotel room suite tonight a a very reasonable cost thanks to the Ronald McDonald House discount...still hoping for a room at the Ronald McDonald House at some point but the waiting list is long and not many folks are being discharged to open up space.

Yes indeed, my heart and my mind are both in need of guarding in Christ Jesus. Very much so. My very wise Mom once told me "The years are short. It's the days that are long." May I look to Him first thing each day and throughout each moment of these long days.

"But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love." Psalm 59:16-17

A Whole New Dynamic at CHOP

Where to begin?

We had a wonderful weekend with Tom's family in New Jersey celebrating Easter. Bella got to meet many of her cousins and experience her first taste of a Cantilina Sunday dinner, and seemed to truly enjoy herself. It was fun to watch her slowly take it all in as more and more people arrived to hunt for Easter eggs and enjoy brunch at Grammy's on Saturday as well. And it was, as always, just good to see everyone again!

Lilly had begun to show signs of anxiety over the weekend, knowing that the big day to re-insert her VEPTR rods was quickly approaching. For Lilly, the sweetness of knowing she was going to miss a lot of school nearly outweighed the dread of surgery and hospitalization, but by Saturday night, as we read "Curious George goes to the Hospital" before bed together with Bella (who has had incessant questions about the days to come at the hospital), Lilly began to whimper and express her fears.

Totally founded fears.

The surgery today, Dr. Campbell had warned us, would be just as difficult as her initial VEPTR implant since they had had to remove 2 of her 3 rods due to infection. They planned to reinsert the two and expand the remaining third. So I was feeling nearly equally as anxious as Lilly (maybe even more so...but how can one really compare levels of anxiety?)

It has been just a little over a year since her original VEPTRs had been implanted. That surgery was a doozy and recovery was painful and tough. Since that big surgery, she has had 3 other surgeries and 5 other hospitalizations, none of which have been any fun at all. So who can blame her for feeling a little anxious?

So after our lovely Easter weekend, on Monday morning it was time to get down to business. We packed the car and headed to Philly, where Nana and Pap Pap were waiting (after their Easter festivities with my brothers in Baltimore) to scoop up Jared and Anna and take them back to VA for school to start on Tuesday. Meanwhile, Lilly, Bella, Tom, and I hung around CHOP most of Monday for consults with Dr. Campbell, X-rays, lab work, and a consult with anesthesia prior to Lilly's surgery this morning.

Lilly was the first case of the day today with a 6:15 am show time; she was back in the OR by 7:30am. Around 8:50 we got word that they had just begun to open her up, and by about 11:50 or so we got word they were closing. Dr. Campbell was really happy with the results--good tissue coverage in back, successfully separated scar tissue that had attached her lungs to her rib cage (her lungs had actually been herniataing through her ribs slightly), successful reinsertion of the two VEPTRs and successful lengthening of the 3rd remaining one.

Dr. Campbell has started ujsing a new pain management technique called a "pain ball" which injects a local anesthetic to her VEPTR sites, and that seems to really be taking the edge off of her pain. She has had only one morphine rescue all day long, and a little zofran for nausea. She has really been comfortable all day long, praise the Lord--just thirsty. I know the coming days will likely be hard, but I also know my Lilly is a little trooper, ready for the challenge.

The biggest difference between our experience today and previous surgeries (besides being more knowledgable about what to expect rather than blissfully unaware of just how hard this journey can be) is that we now have sweet little Bella in tow.

Normally, Tom and I are able (thanks to fabulous family members who help with Jared and Anna) to both focus on Lilly and take turns taking a break from the hospital room. This arrangement--with me spending nights with Lilly and Tom being my morning "coffee boy" and bringing Starbucks when he arrives from the Ronald McDonald House in the morning--has become comfortable, even though we'd both rather be at home in our own beds drinking our own coffee.

But now, we are taking turns caring for LIlly and entertaining Bella. We have spent a lot of time in the play room and roaming the hallways and going for walks outside today. I am spending a lot of time answering endless questions about what is happening here with Llly ("who is that? Are they here to help Lilly? Is she still sleeping? Does her back hurt? What are they doing to her now? What is that machine? Will we go home tomorrow? Where is your bed, mama? Who is that person? And that person? And why are they wearing gloves? And what's that noise? What did he say? What did she say? What are you doing? What's daddy doing? Where are you going?" And on...and on...and on...)

I'm sure, for Bella, this is all extremely confusing. We were so thankful to have Tom's sister in law, Wen, here for the day to help take care of Bella while we were focused on Lilly. She was able to help reinforce what we've been telling Bella about the likely length of our stay here (Yesterday, after simply getting x-rays, our first stop for our pre op day, Bella said "OK, are we done now? Can we go home?"). She really has no concept--how could she? We briefly discussed letting her ride back to Grammy's house with Aunt Wen where daddy could come back to get her the following evening,but quickly decided against that plan when she showed a disinclination to even go grab lunch downstairs with Aunt Wen while we waited for word from Dr. Cambpell from the OR. The coming days will be filled with lots of playroom trips, and--hopefully--as Lilly feels better, some playtime together in the hospital room. For Tom, his evenings will no longer be his chance to relax and unwind after stressful days at the hospital, but will be spent trying to communicate with his own child who does not yet speak his language and who can be easily frustrated when Mama is not there to help interpret.

So as I type this update, I am enjoying the stillness of not having to answer constant questions and the white noise of the bubbling water from LIlly's chest tube. Tom and Bella have headed to the Ronald McDonald House in Camden NJ for the night (only one night was available, but they'll take it) and I am praying that Lilly, after resting comfortably pretty much all day long, will sleep well tonight. We shall see.

Stay tuned. And thanks, as always, for reading!

Gearing Up.

Wouldn't want to get too comfortable in our new family dynamics or routines, now, would we?  No, never.  I would have to change the title of this blog if we did.

Now that Bella has been home for nearly 6 weeks, it is time to head back up to CHOP and proceed with Lilly's VEPTR treatments.  Yes, that means surgery.

Here's the plan:

We will head first to New Jersey for Easter weekend to spend a few fun-filled days with the Cantilina Clan, allowing Bella to meet the gaggle of cousins, aunts, uncles, and Grammy and Pop Pop (whom she has met only on skype so far).  Hoping she'll still want to keep us after witnessing the true chaos of a Cantilina Sunday dinner--with the fun exponentially compounded by the annual Cantilina Easter Egg hunt courtesy of Auntie Em.  Even the older kiddos are excited about attending this annual event, which they have only once previously in their entire lives been able to attend.  It is epic.

On Monday, Lilly will see Dr. Campbell and have lab work done prior to her surgery (on Tuesday the 10th).  Following this office visit, Tom will drive Jared and Anna south to meet up with Nana and Pap Pap somewhere between Baltimore and Philly on I-95 to hand them off and let Nana and Pap Pap take them back to VA to get ready for school to start back up on Tuesday.  Tom will then drive back to Philly to meet up with Lilly, Bella (who is not anywhere near ready to be left with family members while we're gone with Lilly), and me.

We are praying that we are able to get a room at the Ronald McDonald House so that there are many resources for entertaining Bella during Lilly's hospitalization.

Then Tuesday is surgery day.  Because Lilly's infection has been successfully eradicated (praise the Lord!), it's time to put those rods back in her back to help straighten her spine and open her chest cavity, allowing her lungs and her heart to have room to function properly, especially as she grows.  So Dr. Campbell will work his magic and--Lord willing--Lilly will soon regain the height she lost when the rods were removed.  Dr. C told us to expect this surgery to be every bit as difficult as her initial VEPTR implant surgery was last February (see here to re-read all about that big day or navigate to that general time frame last year if you like!), so we are expecting probably a 7-10 day hospitalization.  Maybe longer, maybe shorter (please!).

We appreciate your prayers for our family as we face this upcoming surgery with even more trepidation than usual since we will have Bella in tow as well this time. 

Please pray for:

• Safe travels to and from NJ this weekend and Philly on Monday. 
• Good health in the lead up to Tuesday.
• A successful, safe, and smooth surgery for Lilly.
• Wisdom and strength for Dr. Campbell and his team at CHOP.
• Wisdom and discernment for Tom and me as we care for Lilly and help her team manage her pain and help her get back on her feet post op.
• An extra measure of grace and patience for Tom and me as we not only manage Lilly’s physical and emotional needs during this time, but also as we care for Bella and help her with  a fairly big diversion from the routines to which she has just begun to grow accustomed in our family.  May Bella’s presence be a fun and helpful thing to Lilly, not an extra drain on each of us during a stressful time.  And may Bella not be upset by Mama staying at the hospital with Lilly at night while she goes with Baba to the hotel.
• A smooth and quick recovery for Lilly.
• That a room might be available for us at the Ronald McDonald House in Philly.
• Good health and safety for Jared and Anna, Nana and Pap Pap (Laird and Harriet Parke, my folks) while they are here without us.

If anyone wants to send Lilly a card or e-card while we're at CHOP, here is the mailing address and a link that explains how send an e-card:

Child's full name and room number
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399

http://www.chop.edu/ecards/ecards.cfm

Thanks for following along and for your prayers!

Free at last, Free at last! Fever Free at last!

Praise the Lord!  Lilly has been off of her antibiotics since last Wednesday morning, and had some labs drawn yesterday to check for any signs of remaining infection.  Labs were CLEAR.  We are so happy, elated, thankful, relieved! 

We are praising the Lord that our long ordeal with Staph aeurous is, it seems, over, after a long 8 months.  As Dr. Campbell said, it has been a "bump in the road" of her regular scoliosis VEPTR expansion surgeries, and now that we are through this, we can resume her treatments for straightening her spine and expanding her thoracic cavity.  She is scheduled for re-implanting her hardware on 10 April--so we are now working hard on getting her to gain some weight prior to her next surgery--and will continue regular expansions thereafter, Lord willing. 

On a side note, she is still sporting 3 "steri-strips" from her last surgery in December.  These are the little strips of tape that cover the stiches where she has incisions, and we are instructed to let them stay on until they fall off on their own.  Lilly does NOT like anyone to mess with her steristrips, and she dreads bathtime because (like a bandaid in water), they tend to come a little bit loose and flap around when we're rinsing her hair.  Mommy does not like to let the steristrips just kind of hang out indefinitely when they are barely hanging on (like a tooth hanging on by its last little thread) and just wants them off.  Solution?  The "Steri-Strip Fairy" has begun to make some nighttime calls to Lilly's bedroom, leaving a penny for each steri strip that comes off (two pennies if Lilly allowed someone to peel it off, which, apparently, is NOT incentive enough).  Only 3 steri strips to go!! 

We are so thankful that she is healthy prior to our trip to China--our worst fear had been that she would continue to be feverish and fighting infection while we were away.  Now we are just dealing with anxiety over the prospect of Mommy and Daddy being away for so long...praying that she will have peace in her heart and will feel completely safe and comfortable with everyone who is lined up to stay with the kids while we're away.

Here, by the way, is the little girls' room now that we have unbunked the bunk beds in preparation for Isabel's arrival.  When they're both older we will re-bunk them, but for now this seemed safer and they can see one another at night.  Lilly is so happy that she will soon have someone sleeping in the same room. 

Health Updates on my Girls...Fitting Together Puzzle Pieces

Last week was quite a week. 

I was blessed to be able to attend a women's retreat with ladies from our new church home--Chantilly Bible Church--and it was wonderful to get away, get to know some new friends, enjoy crisp fall weather, and hear some teaching from the Word. 

Everything was great...until the text message I received from Tom on Sunday morning, in response to my text to him asking "Are you guys getting ready to go to church?"

His reply: "No.  Lilly had fevers last night. We're staying home."

Gulp.  My heart sank.  Backing up a few days:  Lilly had finished her last round of antibiotics on Tuesday the 15th, just 5 days prior to the fevers beginning. 

"Please Lord, let it be viral.  Please Lord, let it not be the infection still lingering." 

We dosed her with tylenol and motrin round the clock to keep the increasingly higher fevers at bay.  Her pain levels began to increase in all the usual places to the point where we were back on oxycodone and valium to manage it. 

While I was home nursing Lilly, the school nurse called midday Monday to let me know Anna had come to her office feeling nauseous.  This news almost made me feel relieved, thinking that Lilly might also be fighting a viral stomach bug.  After all, she had wretched a litle bit Monday morning after taking some medicine.  Never before have I so wanted my child to show sings of the stomach flu.

So, Anna joined us at home that Monday with one of the bizarre "stomach bugs" that she tends to get now and then.  I say they are bizarre because they do not follow the normal pattern of a 24-hour bug.  Rather than feeling absolutely miserable for 24 hours, having no appetite, and basically keeping nothing down, she feels ill once every 6-8 hours or so, but has an appetite in between and seems pretty normal otherwise.  It's just that pesky throwing up every now and then that means she can't go to school. 

So, as Lilly continued to fever and suffer from pain (with no signs of any other illness...no nausea, no upper respiratory syptoms, no issues with digestion or urination), Anna was home with us for the next 2 days of school.  By Thursday, I thought she was ready to try again and sent her to school.  That was the same day Tom had made arrangements for Lilly to get in for some lab work and chest x-rays to figure out what was going on with her.  So, while I was at Ft. Belvoir's hospital with Lilly, I got another call from Anna's school nurse to let me know she was back in her office, complaining again of nausea.  Tom had to leave work early to go pick up Anna.  Meanwhile, Lilly and I picked up our new prescription of oral antibiotics, the blood work showing that her white counts and other markers for bacterial infection were highly elevated.

Back home again with both my girls on Thursday afternoon, I started connecting some dots with Anna's mystery illnesses.

The last time she suffered from this illness was back in February when Nana was staying with Jared and Anna while Lilly, Tom and I were in Philly for Lilly's initial VEPTR placement surgery.  This was when Anna had also first begun to complain that she had weird "static" and "morse code" noises in her left ear and had trouble hearing out of it.  At the time, I had written off the weird ear issues as just part of whatever her weird viral stomach issues had been and thought it would pass.  The stomach issues did, the tinnitis in the ear did not.

So, as you know if you have been keeping up with us, we have traveled a long road of evaluating Anna's hearing which will culminate in getting her first hearing aid this week (she is SO excited, BTW).  There hasn't been any other episodes of the "bizarre stomach bug" until now.  But there have been recent episodes of dizziness/vertigo, which also required her to come home from school. 

By now, you are probably all wondering why it has taken me so long to connect the dots....

I believe that Anna's bizarre stomach bugs are not at all infectious.  I now believe they are simply another aspect to her inner ear issues, triggering the nausea center of her brain.  Researching unilateral hearing loss in children, I have discovered that often times other symptoms can include dizziness and nausea.  We tried giving her some dramamine at night Thursday night and some Robine Friday morning before school (both anti-emitics that help with motion sickness), and she felt great.  Confirmation.

I hope to discuss this theory with her ENT when we see him this week. 

Lilly, meanwhile, has been on her antibiotics again now for 3 days and has been fever free for over 36 hours now.  Again, confirmation that the infection is still here.  She is still having some pain, especially at night, but hopefully that will also soon subside.

So, both Anna's and Lilly's puzzles are getting pieced together.  I am thankful for answers, even though, in Lilly's case, it raises more difficult questions. 

What to do next?

We hope to consult with Dr. Campbell this week to get his take and discuss some possible solutions to the lingering staphoreous infection.  I won't even begin to discuss what my mama's brain starts to list as possible treatment options...I only pretend to have medical knowledge because I'm married to a doc.  But I have enough knowledge only to be dangerous and/or cause myself worry.  So I won't go there with you.

This morning, I am hopeful that both of my girls will be back to school (Lilly, of course, having missed the entire week last week, is nervous about re-entry) and our lives will have some semblance of routine again, at least for a few days until Thanksgiving break. 

Thanks for sticking with me on this long post.  It was probably written more for me that for you...it helps me to process our crazy lives when I write it all out!

Moving Forward

Just a quick update to let you all know that we have, finally, received our Virginia child abuse clearances.  Our homestudy update has been finalized, reviewed by CCAI, and our supplement 3 paperwork is on its way to the USCIS lockbox as I type.  A few days from now, CCAI will file our I800 paperwork to USCIS so that our I800 approval process can run parallel to the supplement 3 processing (as I understand it). 

Our best guess is that we'll be traveling sometime around February of next year.  Not soon enough!  Especially after receiving this new photo of Isabel taken by a family who just returned home with their little boy, who was also at Luoyang Children's Welfare Institute.

I just want to hug this little girl and kiss those cute cheeks!  Lilly says she looks like she needs lots of hugs.  I am thankful for the holidays around the corner which are always a huge time warp and will be a divine distraction from the wait.

On a separate note, we are *hoping* we are moving forward on the post op infection front with Lilly....but as she is currently under the weather with fevers and some pain (having just finished her last round of antibiotics last week--5 months after this all started), we are praying that the infection is not recurring.  Because Anna has also come home from school today with nausea and sore throat, we are hopeful Lilly is simply fighting a virus...please pray with us that this is the case.

Feeling Ready to Get Home

Keeping this short tonight...we didn't get a long nap today, so I'm ready to join Lilly in slumberland.

She had a fabulous night last night. We remained roommate-less, and she slept SO soundly that she managed to barely awaken for her bladder (I did have to change some sheets in the middle of the night), and to entirely sleep through the blaring pulse ox alarm that persisted when the little light sensor came off of her finger (because she had rolled all over the bed and the wire was wrapped around her body), a blood draw early this morning, and the administration of oral meds early this morning.

We had a fun and relatively uneventful day. She barely complained of any pain all day (a little muscle spasm just before bed tonight) and is moving around pretty much normally. We spent much of the day in the play room, where we found all sorts of fun activities. Her appetite continues to be good, and we did have a consult with the nutrition department to gain some strategies for increasing her caloric intake (gonna' have to do that without upping mine!). The infectious disease team stopped in to discuss management of oral antibiotics upon discharge...we are going to go with a much less potent antibiotic for a few weeks post op, then hopefully will be fever free and antibiotic free thereafter. The ortho residents came by to change her dressings and her incisions continue to look lovely (as lovely as incisions and stitches can look--this is actually the best they have ever looked to me). She hates to have her dressings changed or her back even looked at, so she did protest quite loudly while they changed the dressing (which was, unfortunately concurrent with the infections disease team's visit because they wanted to see her incisions too).

We do not have a clear timeframe for discharge, which is a little frustrating, as we try to coordinate care for the older kiddos at home through the weekend. The longer we stay here, the more complicated it gets. We are hoping Dr. C might call in tomorrow with discharge instructions so we can get on home. We are all ready.

We are so grateful to God for the healing we are seeing in Lilly and for the opportunity to bring Him glory in sickness and in health. May He be magnified in our circumstances, whatever the outcome. Thanks to all of your for your comments and prayers!

Night and Day

Well, after my post last night, I was looking forward to and praying for a good night's rest with few interruptions.

Silly me. It is a hospital, after all.

Lilly did sleep soundly from about 11pm-2am. So did I. Around 2am her O2 sats started to drop and the alarms started ringing. Didn't disturb her, but no way could I sleep through them. After a few minutes, her sats would go back up. (and I know how to turn off the annoying alarms, but the way the room was set up, it required climbing out of bed to reach the box.) After a bit, the nurse brought in some O2 blow-by and all was well again. Until around 3am, when the nurse came in to alert me to the possibility that our room--set up as a private room (our first private room at CHOP--very exciting...especially if you remember the snoring Amish mom from our stay in February) could very well be getting a roommate after all. Sure enough, by 4am they started rearranging furniture and bringing in another bed and a room partition and scooting Lilly's bed nearer to mine (and the hospital beds, when moved, insist on beeping like a semi truck backing up). So lots of commotion.

I know I mentioned last night that Lilly was ravenous before bed. So in the middle of the night, when she was awakened by all the ruckus, she decided she was hungry again and needed to eat *now*. She actually wanted more tuna! I declined on feeding her tuna at 4am, but given that Dr. Campbell really wants her to gain weight, I relented and let her have some fruity snacks (neater and less stinky). She was pleasant as could be, and when she heard we would be receiving a roommate, she commented randomly "maybe her name will be Lillian, too." (In hospital settings, she mostly gets called Lillian since that is her given name). Sure enough, our new roommate was another Lillian--only about 10 years older than our Lilly.

So, needless to say, we did not get much sleep between about 4-6 am (and from 2-6 am for me). Once shift change occurred at 7am, I was wide awake, sincve my body is used to a much earlier morning wake up time anyway.

Lilly, however, slept nicely until nearly 9am, and our roommate and her mom slept till nearly 11am since they had spent almost the entire nigth in the ER prior to admission. So we spent our first few hours trying to be very quiet for the roommate. Thankfully, we knew her name was Lillian, too, as the lab almost drew blood on the wrong patient until I made sure he had the right last name...

Lilly's mood was great, and her appetite was great, for the early part of our morning. Until we decided to get out of bed and go to the play room in order to be able to talk above a whisper. Once Lilly attempted to bear her own weight, either standing or sitting in a chair upright, she was in severe pain. Severely severe. Off of that pain chart...there are no cute faces to match the grimace she was making. Poor thing. So we added some valium to the mix of meds she is getting, and it seemed to help a little.

We spent some time this morning doing some amazing crafts (she directed and supervised while being held in Tom's lap and I did all the grunt work...) I should post a photo of "her" creation since the concept was pretty creative even though technically I did the cutting and gluing.

As for me, my wonderful man hung out with Lilly while I got out for a little jog and an excursion to find batteries for her Leapster game and Greek yogurt for my breakfasts. SO GOOD to get fresh air and moderate exercise.

Then it was lunchtime...pain still nagging, appetite not as fabulous as it had been. And then, sas I held her while she moaned about the pain (pain meds just taken, but not yet kicked in) she fell asleep. Deeply asleep. For about 3 hours. Guess she needed that rest, cause the rest of the day was a night and day difference in her pain level, her countenance, her energy, her mobility (almost totally normal now), and her eagerness to engage in fun activities.

The rest of the day we spent playing with toys we brought from home, watching some "Olivia" episodes I downloaded from iTunes (she first saw Olivia in the waiting room before surgery and really liked it...) and eating dinner. Appetite was back, praise God.

Because of her mongo nap, bedtime was on the late side tonight. I kept her up and we played with her toys until her next dose of pain meds so she wouldn't have to be awakened to take them.

We are thankful that Tom has a room at the Romald McDonald house tonight--they haven't had space the past few nights. Now he is walking distance away. Wonderful, wonderful charity. I hope to run the Philly marathon next fall as a fundraiser for the Philadelphia Ronald McDonald house--a blog post for another day, I suppose.

Dr. Campbell came in late in the afternoon to check in. The lab results from her tissue samples are, so far, not showing any bacteria. In all other regards, she is doing great. Tomorrow we'll do blood work and the tissue sample cultures should be final. We will also have a consult with Infectious Disease specialty and hopefully a consult with a dietician to give us some strategies for helping her gain weight. We are hopeful we any be discharged as early as Saturday...

Hoping so. SUre do miss my big kids. They are holding up well at home with Grammy and Pop Pop, praise God. One of the biggest downsides to all of these medical visits with Lilly is, for me, the feeling that I am missing out on their lives and neglecting them somehow. The upside is that they have developed new and wonderful self-sufficiencies in many ways, and are showing growth and maturity. Gotta' love that.

OK, enough words...time for sleep. More tomorrow.

Surgery Day

We are on the road to CHOP as I write. We had a full day of co salutations and radiology studies on Monday, and all went smoothly. We spent the last two nights in New Jersey with Tom's siblings and their families, thankful for the chance to get away from the medical setting and catch up with everyone.

Even so, underlying all that we do on these "down" days is the knowledge that surgery day is right around the corner. We have seen God do amazing thongs in Lilly's life, and we completely trust Him to care for her in better ways than we can ask or imagine. Still, as we drive south this morning, the shift in Lilly's mood from carefree to pensive and anxious is palpable. It is hard to see her afraid...especially when we ourselves are feeling a bit of anxiety. So, now we focus on giving thanks and lifting her to Him in prayer.

Our show time today is 11:30am. Dr. Campbell plans to re-position one of her VEPTR rods that he discovered on Monday's CT had migrated a bit. That could explain the pain on her left side. But not the fevers. So he also plans to use a small instrument to test areas along her rods for infection. If he can find any small infected areas (nothing large shows up on MRI, ultrasound, or CT), he will open her in that spot and flush her out. If it seems that an entire piece of hardware is infected, he may opt to remove it for a time, re-implanting at a later date. So it's impossible to know how ling her surgery will last today or how lo g her recovery might be.

We are thankful for our families, friends, and church family in both Florida and our new church in VA lifting Lilly to our sovereign Lord this day. Also encouraging me today is reading about the awesome thongs God is doing for my friend, Sonia, and her family who are in the midst of adopting a little boy with a serious heart defect. If you could use a dose of encouragement and humor, I highly recommend her blog: http://cheaperbythehalfdozens.blogspot.com

God is good, gracious, sovereign, and mighty to save.

After a week like that, what else can surprise us?

So, on Tuesday of last week, we were having a fun summer day. Anna was at a friends' house playing. Lilly had a little friend here to play. Jared was--where else?--at band camp. Tom had just left for another TDY, this time to Texas. Around mid-day, I was standing in my kitchen making cookies for the band-camp-carpool kids as Lilly and a little friend played (and had just run into the kitchen to investigate the yummy smell that had wafted over to their play area). Suddenly, a large truck began to rumble outside. Then the truck became a number of very large aircraft rattling the windows or perhaps crashing into the ground, or perhaps the airplanes were actually bombs at the Eglin bomb range (but how could that be, since that is in FL?) or even a terrorist attack?  Then, as I watched my kitchen sway one direction and my sunroom sway another, and as I held onto the kitchen counter to steady myself, and as the girls with big wide eyes asked me "what's that noise?" it dawned on me, "we're having an earthquake!"

I quickly hustled the girls under the kitchen table, then momentarily realized that outside was a better option. We ran out the front door, clipping the leash onto the bewildered dog to exit with us, and met up with neighbors, also wide-eyed, in our cul-de-sac. That was Tuesday.

On Thursday, the forecasts for Hurricane Irene were not looking good for our upcoming weekend. Earlier in the week, when it was uncertain whether the storm would head toward the Gulf or up the Atlantic, I had hurriedly mailed to our Florida tenants the cables that power the generator we had left behind in our Florida house thinking they would need it more than we would. The cables had inadvertently gotten packed with our household goods and I wanted to be sure the tenants had them in case they lost power during Irene. But by Thursday it was clear the storm was heading up this direction, steering completely clear of the Florida panhandle.  Tom began re-thinking our plans to head to New Jersey to see his family and celebrate a bridal shower for our beautiful niece, Tanya. By Friday, it was entirely clear that staying home--keeping the roads open for those who HAD to evacuate and reducing the risk that we might be driving in bad weather, sitting in heavy traffic, or stuck in New Jersey if roads were damaged or closed--was the wisest choice despite our desire to be in NJ with family. 
In the meantime, our dear friends Mike and Beckie Lerma, whom we know from our time at Vandenberg AFB, California nearly a decade ago, and who recently moved to coastal VA, e-mailed to see if we might be around for the weekend as they were likely to evacuate their home and move inland. Initially I had offered our house as a safe haven, even though we were planning to be away. When we decided to stay home, I let them know we would be thrilled to have them here so we could spend time together after so many years. In fact, we had never even met their 4 children; when we saw them last, they were young childless newlyweds who used to babysit 3-year-old Jared and infant/toddler Anna. So the thought of hosting their family was exciting to me. The fact that Beckie was full-term pregnant with their 5th and due any day made the idea of staying in our home--with a doctor nearby--appealing to them.

So, Saturday I got up WAY early, was the first customer in the door to the local Shoppers Food Warehouse (great prices), and stocked up on ingredients for lots of meals and bottled water so we could hunker down for the coming storm with our friends. I spent the whole morning cooking several meals in case of power outages and no means of cooking. The house smelled great when they arrived in mid-afternoon, and it was so fun to see their precious kids and hear about their exciting pioneer-style life in a VERY rural area of VA. It was so amazing to see how far they have come since we last saw them and shared a meal together.

Sharing dinner on Saturday night as we braced for the winds and rains of
Hurricane Irene, expected in the wee hours of the night

Because of their rural location and because it was their 5th child, Beckie had been planning a home birth. Knowing she was due any day, they had come prepared with a brown cardboard box with their "birthing kit"--everything they would need to deliver a baby at home.  So when Mike emerged on Sunday morning and said that Beckie had been having contractions all night long and they were pretty sure this was it, I knew we were likely to be welcoming a new baby in our home at some point on Sunday.   We gave them their space, and I checked on them periodically--to pray over Beckie and bring crushed ice and water--and I could tell she was progressing simply by her countenance and posture each time I checked. Mike was by her side nearly every minute, and Tom was upstairs giving them space, simply on "stand by" in case of emergency. 

Mostly, I spent my morning focusing on taking care of the older 4 cuties--ages ranging from 7 down to 18 months--with the help of Jared and Anna, who rose to the occasion and engaged fully with the group of littles in their house.  We played around the house, ate snacks, went for walks with the dog, played at the park, looked for fish in the pond. By late morning, the 18-month-old was down for a nap and I began making lunch.  As I was slicing sandwiches and apples, I heard what I thought was the toddler awakening from her nap upstairs.  I wiped my hands, ran up the stairs, and paused to listen outside my bedroom door where we had set up her pack-n-play.  Dead silence.  Still napping.  So, back downstairs I went to finish lunch.  Again, louder this time, I heard a cry, and realized it was a distinctly newborn cry, coming not from my upstairs bedroom, but from my basement!   I flew down the stairs to see Beckie cuddling her new little boy, Ezekiel Thomas Anav Lerma, who was a tiny little miraculous bundle.  Tom was not needed at any point, though he did go down and check the baby and Beckie once Ezekiel had arrived. 

The first few miraculous minutes of life!

LIlly wondered whether her baby doll was bigger or smaller than the baby.
It was pretty close.  He weighed in at around 5 lbs on our bathroom scale...

The little boys had a blast climbing all over Jared and wrestling with him, just as
Jared used to do to their daddy when Mike and Beckie babysat for us in California.

fishing with Jared

The rest of the day was a complete blur to me--still caring for the older kiddos, preparing meals for all of us, and making sure Beckie was comfortable.  She is an amazing woman, and was able to make it upstairs to join us for homemade chocolate birthday cake for Ezekiel that evening.  What an amazing celebration. 

The Lermas left late Monday morning, headed back to check on the status of their farm and animals and get back to their normal lives with a 7th family member in their midst.  The exciting weekend had come to a close and I was left pondering God's amazing sovereignty to bring our families back together for such a miraculous and momentous occasion. 

They had even brought the infant carseat, just in case.  Full minivan now! 
Family of 7 on the road!

After our exciting weekend (the whole cul de sac was abuzz with the news of what had transpired in our basement), it was time for us to get back to our own routines.  With school starting next week I was planning on using the week ahead to make sure we were ready and to have some summer fun with my kids before my house is quiet during the day.

Except by Monday evening, it was becoming clear that Lilly was beginning to feel ill.  Her most recent course of antibiotics had been running dry, and we had begun to cut her doses and stretch them out in order to make the meds last for more days.  But her last dose was on Sunday.  When I took her temp on Monday night, it was 101.8 and she was complaining of pains in the usual places--left abdominal side, left arm, left leg, tummy.  She slept very little Monday night and I gave her the last remaining drops of linezolid Tuesday morning in an attempt to give her body any help I could.  Thankfully, we had one remaining written prescription for a refill of the antibiotics so off to CVS we went to have it filled.  It will be ready for pick up this afternoon.  Tom was able to touch base with Dr. Campbell yesterday, and she is scheduled to see him in clinic in a few weeks, with possible surgery to clean out her hardware that same week before her next expansion. 

So, back to school next week.  With the separation anxieties triggered in Lilly by the prospect of school, I am thankful we can get her back on the meds to keep the infection at bay for a few weeks to allow her to get into the routines of school before any more medical trauma.  I know Anna is anxious about her new school--she'll be in 6th grade, top of the elementary school, and has met a few other 6th grade girls in the neighborhood.  Jared has his freshman orientation today and will get his schedule tonight at the "Cougar Kick Off" for Oakton High School; band camp seems to have really paved the way for him to feel at home here already and he does not seem overly anxious, except for the size of the school and the prospect of getting lost.

The weekend ahead promises some fun, as we welcome my parents and my older brother for a few days, then spend Sunday with my younger brother's family near Baltimore. 

Nothing can surprise me anymore...thought I am delighted anew by the fresh grace and mercy of the Lord each morning!