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.

Resting Comfortably

What a day.

There are almost no words to truly describe the gamut of thoughts and feelings I have tonight as I watch Lilly sleep in her hospital bed. Gratitude is the overwhelming emotion--gratitude to God for answering prayers for a safe surgery, for guiding Dr. Campbell's hand, for Lilly's amazing endurance and attitude through our long day of waiting and fasting. Gratitude that I get to be Mama to this spunky and beautiful child who has come SUCH a long way since she came home from China two and a half years ago, even just since her very first surgery almost a year ago to the day. Gratitude that we live in a place and have health insurance that allows us to access the quality of care, technology, skill, and expertise that we have been blessed with to help Lilly's spine to straighten and ribcage to expand, allowing her to lead a relatively healthy life into adulthood. Gratitude for family members that are available and eager to help however we might need. Gratitude that, even though we just moved and still feel relatively "new" and "disconnected" in our new home, we already have great neighbors wanting to help and a new church family lifting us up in prayer, even though we have really only met a few people there. Gratitude for friends around the globe who love us and are praying for us as well.

And at this moment, I am thankful for the soft sound of Lilly's easy breathing, for the quietness of a private hospital room (no snoring Amish moms this time! :)), and for the hope that Dr. Campbell may have solved Lilly's ongoing pain and fevers.

Wow. So much for which to be thankful.

Here is the scoop on the surgery itself:

Dr. Campbell removed the lower portion of LIlly's VEPTR device on her left side. The hook on her pelvis had slipped, and the rod was displaced. That definitley explains the persistent pain on that side of her body. THe skin coverage at that location is also quite poor and Dr. Campbell suspects that her body will benefit from not having any metal in that location for awhile--at least until she can put a little more meat on her bones. He is suspicious that the bacteria are also lingering on this portion of the hardware, and we are hopeful that this may solve both problems. There were no other visible signs of infection anywhere, but he did take some tissue samples to see if any bacteria grow out of them when cultured. He wants her to stay here for a few days to monitor her and to await the cultures and further blood work. Even though our wait before surgery was long today, the surgery itself was pretty quick, and Lilly's recovery this time has been MUCH easier than any other surgery. She was ravenous once she was awake enough to realize it, and ate nearly 10 little saltine packets, some yogurt, some fruity snacks, some apple juice, and topped it off with nearly 9 ounces (3 small cans) of canned tuna. Wow. She is looking forward to breakfast tomorrow and has already selected bacon, sausage, chocolate chip pancakes, pears, and chocolate milk from the menu.

She is a little dizzy when she stands, and I'm sure things will feel a little different to her when she tries to walk, since without that rod, her center of balance may be a little off. We'll see how she feels tomorrow.

For now, I am ready for some sleep, and am praying that she sleeps soundly and peacefully tonight.

Thanks again for your love and prayers.

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.

Time to see the Doctor...again...

So, it was a great weekend--shopping day with my girls on Saturday, Tom built two beautiful book cases so we can unpack the last of the book boxes, the kids all got to spend lots of time playing outside, and Lilly even jumped over a few hurdles and played with some of the sweet neighborhood kids outside and even at their houses without mommy right by her side. Amazing. And, best of all, we think we have found our new home church, and it feels good to tentatively start to put our feet down and get involved.

Grammy and Pop Pop arrived safely last night to take care of Jared and Anna while Tom, Lilly, and I will head up to Philadelphia to see Dr. Campbell this morning. He will have the results of last week's MRI and ultrasound, and we will be discussing what he thinks is the best way to address the ongoing infection in Lilly's hardware. I wish I could tell you what some of the options are, but I would only be speculating. Lilly is tentatively scheduled for surgery on Wednesday the 21st; so our stay in Philly could be all week (depending on what exactly they do and how her recovery goes.)

So, we are getting packed up this morning. I am so much less organized than I like to be when packing for a medical trip...I guess it is getting more routine, and the fact that there is no air travel makes packing a lot less stressful. I think Ihave also learned that I don't need to bring NEARLY as much stuff to entertain Lilly--books, coloring books, little toys, etc.--because she doesn't usually feel much like playing or coloring when we're at the hospital. I am eager to have this infection wiped out...but the hospital stay is something that I am not looking forward to. The first few times, it was a novelty and, even though hospitalization is hard, my adrenaline seemed to make it all quicker. This time, however, after our hospitalizations in FLorida this summer and all that they entailed, I have to admit I am sort of dreading it this time. The folks at CHOP are fabulous, don't get me wrong. Couldn't ask for better care, hands down. But the sleep deprivation, the lack of regular exercise or regular routine of any sort, and--most of all--seeing Lilly in pain and discomfort are things that make me want to curl up and stay in bed.

Our prayer is that God would bring healing to her little body. That Dr. Campbell would have wisdom to know the best course of treatment for her and that God would guide his hands during surgery. That Lilly would continue to be strong and spunky and endure these hard hospital visit with grace. That Jared and Anna would thrive in their regular weekly routines (and Anna would feel comfortable with her new swim team--practices start today). That their bond with Grammy and Pop Pop would grow stronger with this extended time together. That everyone back on the home front would stay safe and healthy.

I'll keep updates coming on Facebook and more details here. Stay tuned!

Headed to Philly

So in the midst of transitions to school and our new home, we have been continuing to manage Lilly's infection using potent oral antibiotics.  Her second round of meds was beginning to run dry a few weeks ago, and we had started to stretch out her doses in the hopes of making them last longer.  But sure enough, after being off of them for about 2 days, Lilly began to fever again and complain of pain in all the usual places--tummy, left side of abdomen, left arm, and left side of her lower back, and upper left leg.  Confirmation that, while the antiobiotics are effective at keeping the bacteria at bay and not allowing it to enter her bloodstream, once she no longer has the help of the meds, the bacteria (that are likely colonized on her hardware, where there is no bloodflow) can re-enter her bloodstream and cause her body to fight them with a fever.  So, thankful to have one refill available on her prescription, we quickly picked up some more meds and got on Dr. Campbell's calendar to see how we can address this infection.
 
Lilly and I are headed to Philly this afternoon for some radiology studies on Wednesday the 14th.  We have a room waiting for us at the Ronald McDonald House in New Jersey, just over the bridge from Philly.  I am so thankful to be a quick and hopefully easy 3+ hour drive to CHOP from our new home! 

We will head back up to CHOP next Monday the 19th for an office visit with Dr. Campbell and at that point we'll discuss what he thinks is the best way to address the infection.  She is tentatively scheduled to go to the OR on Wednesday the 21st.  So Tom has taken the whole week off in anticipation of surgery and recovery time, and I have already let her new kindergarten teacher know that Lilly is likely to miss the whole week of school.  She is due for her next expansion soon, too, but I'm not sure if Dr. C will address that at the same time or if we'll be back for the expansion surgery.

Hopefully her week off won't make it hard for her to return to school after she is just beginning to get used to it...but I suspect it will.  We'll cross that bridge when we come to it.  Last night at dinner, she was debating which was the lesser of the evils: going to school or having surgery.  Sheesh!

Tom's folks are coming down to stay with Jared and Anna, so they can stay in their routines, for which we are really grateful.  So glad it's an easier drive to VA than to FL for our parents when we need their help!   

Prayers for Lilly's healing are most appreciated! 

A Catch-up Photo Journal...

So, for the final few weeks before school started, we did  alot of fun things (other than be amazed by natural disasters and the miracle of birth in our home.)  Here are some photos for your enjoyment:

Lilly at Orkney Springs, where Jared spent a week of overnight band camp.  We attended family day at the end of the week to see them perform their field show--fun day!
 

Reunited with Jared after his absence all week.

Lovin' on my Anna

Jared loves this little girl!  Fun to watch him walk around the grounds with Lilly on her shoulders. 
Hmmm...maybe a girl magnet?  Nah, not my Jared.

We had a special visit from one of the families in our adoption travel group, who were passing through VA on their way from FL to NY.  So exciting to see Kim, Michael, Sophia, and Bella and how much these girls have grown since we last saw them in Guangzhou!

The kids and I got to celebrate my brother, Justin's birthday at their home in Ellicott City.  I LOVE living closer to my family and being able to share special days like this!

Justin is officially a "coffee geek" and has his own facebook page called "saturday morning espresso."  He does some amazing latte art.

Here are LIlly and Anna with their cousins, Abby, Delaney, and Elli at the American Girl store in Tysons Corner mall.  We went to their American Girl Bistro for a back-to-school lunch with their dolls.  What fun!

Here's Lilly with her "Baby Kit" Bitty Baby

My sister in law, Lita, with Elli

Delaney and Lilly and their dolls.

Our dossier is officially sent to China...this is one of the last photos we snapped of ourselves as a couple as we still needed some "couple" photos to include in the dossier.  Now we are working on an update to our home study since we've moved...more paperwork and notarizations and fingerprints...ugh.  But we are still somewhat hopeful we could travel late this year or early next year!

My parents and my brother, Doug, joined us for Labor Day weekend.  Here, Nana is giving each of the granddaughters a special teacups from her collection.  They got to choose their favorite two.  So exciting!

Here's my brother, Doug (aka "Uncle Duck") at Justin's house.

Lilly saying thank you for the beautiful tea cups.

Anna loving her Nana.

The delicious 70th birthay dinner for Pap Pap.  Justin and Lita grilled salmon and Joshua made zucchini bruschetta.  Abby made goat cheese-tomato bruschetta.  And the meal was topped off with some yummy lattes!  How fun, once again, to live close enough to get together with my family!!

In addition to fun with family, we began a new school year on 6 September, with Jared starting high school, ANna starting 6th grade, and Lilly starting Kindergarten.  Lots of transitions for all.  Thankfully, Anna and Lilly are at the same elementary school, riding the same bus, which has made it a *little* easier for Lilly to transition to school, but she is still suffering from pretty severe separation anxiety and each morning we are still having tears before school.  Here are some photos from day 1:

Jared, ready to head out into the pre-dawn darkness at 6:15am.  He's been doing great at getting himself up and moving in the morning!  Long days with after-school band practice 3 nights a week...

I hated to wake Lilly on the first day, but now her body clock has adjusted and she is pretty much waking up before I go in to awaken her.

Anna getting ready on day 1.  Her outfit was chosen during our fun shopping outing with her friend Melanie and her mom Catherine back in Florida.  Great memories and a cute look for my growing-up-so-fast girl.

Start the day with a healthy breakfast!

Get those teeth nice and clean!

Ready to go!  New backpacks for both girls (thankfully found one small enough that Lilly can manage it but big enough to hold a folder and her lunch box). 

Waiting for the bus to come!

So glad her sister is with her...

Whole gaggle of kids at our bus stop!

The look of anxiety as the bus pulled up.  Today--day 5 of school--was the first day she boarded the bus with no tears, praise God!



So our first week of school went off well, except on Thursday the rains were so heavy that the roads to the girls' school had flooded and busses couldn't get through.  they were stuck at school until Tom could pick them up in his truck after 6pm...crazy long day!  School was cancelled on Friday becasue the rain was continuing and the roads were still flooded...so it was a long weekend for us, and we got lots done in the house.  Even had some friends over for dinner on Saturday!