Keeping it Real: On My Way Back from the Valley...I Pray

Even though I have been posting here fairly regularly to keep friends and family up to date on our lives, our move, Lilly's health, and our upcoming adoption, truth be told I haven't really felt quite like myself for awhile.  This blog is not really about me, Amy, as much as it is about our family life--the momentous, the miraculous, and the mundane.  But since I'm the author, the tone of what appears here is determined by me.

And, you see, I haven't felt much like "me" lately.  Now, every time we move, there is this period of time during which life just seems not quite *right*. During this time, I feel like I am in an altered world where I carry on with the activities of daily life, but I am not quite myself, my emotions can really oscillate, and I generally feel sad and alone.   The length of time can range from just a few weeks to a few months...and even when it seems like I am hitting my stride for the first time post-move, there can still be days that throw me back off of my feet even up until a year later. 

Don't misunderstand me; moving can be very fun and exciting.  I honestly love the Air Force lifestyle and look at every move as an adventure and a chance to meet people I otherwise might never have met, see places I might otherwise never have seen, and allow God to teach me new things and use me in new ways.  I have loved every single place we have lived.  I have dear friends that still live in each of those places and feel extremely blessed to have other friends around the globe with whom I have stayed in touch through many military moves. 

But the "alone-ness" of moving can wear me down.  Moving always forces me to re-evaluate myself, my priorities, my involvement in various activities, my schedule.  As we look for a new church home, it forces us to truly discern what the most important aspects of church life and doctrine are to us.  As we choose extracurricular activities for the kids, it forces us to balance our time, our energy, our finances, their preferences, their gifts.  All of this, by definition, takes place in the midst of feeling disconnected and isolated. 

This particular move was the culmination of many months of intense activity, excitement, and change for all of us.  If you have been following my blog, you know that 2011 has truly been an intense year for us.  Many, many momentous things for us this year, some fun and exciting, some hard and unwelcome: 

• February: major surgery for Lilly at CHOP
• February/March: Decision to adopt again (yay!)
• April: Boston Marathon for Amy (yay!)
• May: another surgery for Lilly
• June: Lilly's surprise infection and hospitalization
• June: Discovery of hearing loss in Anna
• July: THE MOVE
• July/August: recurrent infection for Lilly
• September: beginning of a new school year, high school for Jared, 6th grade for Anna, kindergarten for Lilly.
• September: another surgery and hospitalization for Lilly at CHOP

All of the emotion leading up to this move seemed more intense than usual.  It is never easy to say goodbye to the friends we have made.  God has graciously given us amazing friends every place we have lived.  The friends to whom we were saying goodbye in Florida, however, were friends who had supported and loved us through our adoption of Lilly, through her big surgery in February, and through her hospitalizations this summer.  Saying goodbye was hard. 

The milestones of this new school year also have made this move more intense:  Jared beginning high school (weren't we just yesterday doing MOMS club play dates at the park??) and Lilly starting kindergarten have made for an emotionally intense sandwich for me.

Tom's new position in this place--and the ambiguities of his role and responsibilties, without the joys for him of seeing patients yet--has also been a big adjustment for him--and hence for us.

Finally, my regular regimen of intense athletic training, which has often been the mainstay of my mental health, has been disrupted in this place--during the summer by the lack of any kind of routine or rhythm, and--now that school has started--by Jared's early morning schedule for high school.  In this place I am no longer teaching fitness classes; spinning in my basement without anyone there expecting a great workout or looking for motivation just isn't as much fun and it takes a lot more self-discpline.  I have no races on my calendar to give me that extra motivation to overcome grogginess for that 4am long run in the darkness.

And, so, I have felt a little "off."

But now, the good news.  I am on my way back. Back to myself, in a whole new way.

Yes, indeed.  I believe I have come through the valley, and am re-discovering joy amidst our new routines, our new relationships, and our new roles in this new place.

• I am re-learning to rest in the Lord and lean hard on Him for my purpose (to bring him glory and to enjoy Him) each day.  I am re-prioritizing my early morning quiet time, which is a glorious chance to soak up God's word and put my day ahead into perspective with prayer.
• I am realizing that it is "ok" to not be female athlete of the year for awhile (even though I am milling around a few possibilities for marathons and triathlons for next year).  As long as I'm being honest and transparent, I'll say it.  It is even ok to be a couple of pounds heavier than I prefer, and I don't need to beat myself up over it.
• I am learning new habits and organizational strategies to make my days purposeful and productive--which always feels better than sitting around on facebook.
• We have found a new church home--and not only is it a place where the truth is preached and solid teaching is available for each of us, but God has seen fit to allow us to be a part of a congregation with an embedded Chinese congregation.  How cool for Lilly (and Isabel, soon!) and the rest of us! 

Even though I know there will still be ups and downs, I feel fresh and renewed for what lies ahead.  Surely, there is only more excitement and challenge to come.
 

Chilling at the Philadelphia Ronald McDonald House...Home Soon!

After a long day of pretty much just sitting around and waiting for final lab results, prescriptions, and discharge orders yesterday, we were finally on our way our of the parking garage at CHOP around 6pm last night. Dr. Campbell came by late in the afternoon (he is SUCH a nice man!!) and felt that she should spend one night locally before we headed home just to make sure she was doing well. ALl of her blood work looked improved and the cultures from her tissue samples were still showing non growth of anything bad. He said "you have your work cut out for you..." meaning in the realm of her very low body weight. He wants us to work really hard on increasing her caloric intake so that she can "put some meat on her bones" before he attempts to re-insert the portion of the device that he removed. He is thinking that, as long as she has gained significant weight, he would like to try again in about 3 months to reinsert it.

Of course, my first thought was "Hmmmmmm, I wonder if that will be before or after we get Isabel, or will it be smack in the same time frame as when we'll be traveling??" Life is indeed complicated and full, but somehow I can rest knowing that in the Lord, all things are possible.

So we spent last night chilling at the Ronald McDonald House (I never cease to be amazed by what an awesome place this is!) and Lord willing today we will be on the road toward home, collecting Anna from my brother's house near Baltimore, and re-joining Jared who had a long day of band competitions yesterday and didn't even get home until 11:30pm last night. He may still be sleeping when new arrive.

As we return home, I am praying for wisdom to know when LIlly is physically ready to go back to school (regardless of how she feels about returning to school) and praying that we can now settle back into fall routines and avoid any imminent hospitalizations. (though we hope to get our referral soon for Anna to see an ENT who can implant her BAHA hearing aid).

Anyway, I cannot wait to be reunited with my big kids! Homeward bound!

Praise the Lord!

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!