Summer Recap: Part One

Wow, will I ever be a regular blogger?  I seem to start every post with "It's been a long time..."  There are so many things I want to share, but so far I remain too bogged down in the LIVING of life to spend any time WRITING about it.  I hope to change that one day soon, but for now another recap of the last couple of months will have to do. 

So back in June, I wrote about Bella's hip surgery.   While her recovery went well overall, and she was discharged from the hospital a week later, the ordeal definitely took a physical and emotional toll. 

I've touched on the condition of her hips in earlier posts, but just want to elaborate a little about what they were like pre-surgery.  Years of living in a laying room, never bearing any weight, never being stretched or moved around, surviving on a very poor diet - all of these factors worked together to nearly destroy her hips and legs.  When she broke her hip in January, her surgeon was so surprised by how soft her bones were, by how "transparent" they looked on x-ray.  The fracture couldn't even be repaired in the conventional way.  Speaking of x-rays, they also showed that her left femur actually curved to the right as it grew, due to the fact that it was always draped over her right leg.  Her muscles were so tight that I could barely get clothing to fit between her knees when I dressed her - her legs literally would not abduct (open) at all.  You can imagine the problems this caused with regard to toileting and hygiene.  She was permanently rotated to the right, as you can see in the photos below:

This is the only way she was able to sit in a chair - with the entire lower half of her body rotated to the right. 

So now imagine the night she came out of surgery looking like this.  After six months of scissored-tight legs it was shocking (in a good way) to see.  And this is evidence that Bella does not ALWAYS smile, as so many people have asked me!  She was clearly unhappy here, and rightly so!

After hospital discharge, the next four weeks were spent at home in the spica cast.  It was June and July...in Hawaii...in a house with no air conditioning...in a half inch thick waist-to-toe fiberglass contraption.  She sweated constantly.  She couldn't have showers...or use the toilet...or sit upright.  She lost every bit of strength she'd gained and every new physical skill she'd acquired during the previous months of therapy.  But she took it all in stride - she was such a trooper. 

We spent most of our summer at home because it was hard to take her places in the car with the cast.  We made the best of it though.  We did celebrate Bella's first Independence Day by going to our town's parade, which she really enjoyed. 

We actually expected the spica cast to remain on for six weeks, so imagine our surprise when we went in for the four-week follow-up and her surgeon decided to go ahead and remove it!  That was a happy day.  Here she is with her sister, moments before they cut it off.

That afternoon Bella came home and slept probably more soundly than she had in five weeks (she was still unable to use the potty right away, so we had to go with diapers for a little longer).  Her little body poured all it's energy into wound healing in the weeks following surgery, so she also lost a lot of the weight she'd gained since being adopted.  But oh, how wonderful her legs looked!  Remember those first two photos above - the knees that could not spread more than an inch?  Look at them now!

 

I doubt that Bella has EVER been held like this.  Even back when it would have been possible - before all the damage was done to her legs - no one would have carried and cradled her.  Not in the orphanages.

Look how aligned, how anatomically correct, and how HEALTHY her legs are compared to the wheelchair photo at the top!

On August 5th, a few weeks after the cast came off, Bella was able to begin attending school for the first time IN HER LIFE :).  She absolutely loved it and couldn't wait to go back the next day.  She only attends half-days for now, but that is a wonderful start. 

So this was a quick rundown, and it is overwhelmingly positive.  We are happy with the surgery and thrilled that Bella is loving school.  But it hasn't all been rosy.  In fact, there have been some hard, hard parts and I would not be presenting a true picture of our summer if I didn't touch on that too - more to follow in Part Two of the Summer Recap. 

Surgery Details

Today Bella had hip surgery - it has been planned for quite some time, and anticipated by us with a mix of both dread and excitement.  Dread because it is going to be a family ordeal and as her surgeon said, "game time" decisions would have to be made in the operating room.  This meant that we would not know what was being done to our child's body until after she came out of surgery.  Excitement because we all hope that this is the beginning of a new chapter for Bella, and that she can really begin to move forward physically now.

Bella's hips are severely dislocated (one side more than the other) due to years spent in a laying room.  Additionally, her bones are very, very soft as a result of chronic malnutrition and non-weight bearing.  Her surgeon was able to see firsthand just how awful her bone density was when she broke her hip and had surgery back in January.  Due to Bella's history and overall health, the plan was to do hip surgery on one side today, spend a week in the pediatric intensive care unit, do hip surgery on the other side next Wednesday, and spend a second week in the hospital.  They were worried about excessive blood loss and a more complicated recovery if they tried to do both hips at the same time. 

However, a few hours into the procedure we got a phone call from the OR informing us that they finished one hip.  Because Bella was doing so well they decided to go ahead and operate on the other hip too!  Obviously this was wonderful news for all of us, as it meant no return trip to the OR next week so it cut Bella's hospital stay in half.  After almost nine hours in the operating room, she emerged medically very stable.  She did have to receive a blood transfusion but handled the very long procedure fantastically.

Now, about the "game time" decisions I mentioned earlier...

We were not able to know ahead of time which type of procedure they would do on the left hip.  It is the more severely damaged one.  There were two possibilities on the table.  Option one would involve preserving the femoral head and putting things back into place, so to speak.  Option two would involve cutting out the femoral head completely.  The decision would be made after they made the cut and visually inspected the femoral head.  If there was enough cartilage there they would choose option one; if not they would choose option two.

Sadly, the cartilage was not only badly damaged, but non-existent in some areas.  The surgeon knew how much I hoped she could save the femoral head.  She knew I had struggled a great deal with the idea of cutting it out completely.  So she took photos of the femoral head so I could see for myself just how bad it was.  That was so nice of her and I was very thankful she did it.  It allowed me to feel at peace about the situation, to know that there really was no other alternative for Bella.  This is what had to be done.  A friend told me that it was a blessing from God that the decision about the femur was so clear, and that He decided that one for us.  I agree.  We are glad it played out the way it did, with such clarity.  Now we do not have to look back in ten years and question anything.  It truly is a blessing. 

So option two it was for the left side.  The femoral head was removed from her body and things were pieced together.  And option one it was for the right side.  Hardware was placed in both hips to hold it all in place.  What does this mean for  Bella?  I am probably asked "Will she be able to walk?" more than any other question.  I thought it best to just put it out there.  She will not be able to walk.  The possibility of her ever walking was very slim to begin with but now it has been removed completely.   We hope that with physical therapy and time, she will be able to stand in order to help transfer herself to the toilet, wash her hands, etc.  This would greatly improve her level of independence as she gets older.

So tonight, she is medically very stable and recovering well.  Emotionally, she is traumatized by the ordeal.  Having food and drink withheld is a very, very big issue - and understandably so, given her history of institutionalization and malnutrition.  She becomes really anxious when she is NPO (nothing by mouth) at the hospital.  The staff does not want her to have anything to eat or drink until tomorrow morning and honestly this has probably been the hardest part of the whole day for Bella.  Tonight she was crying, saying "Mama.  Mama.  Mama." over and over, and BEGGING me for water.

So as I sit here now I am both happy and sad.  Happy that the surgery is over, she came through with flying colors in usual Bella-style, and we can indeed move forward now.  But also sad for the sense of finality that it brings with regard to walking.  Now it is time to accept the reality that this surgery brings and give Bella every opportunity to maximize her quality of life.  She is happy, full of spunk, the embodiment of joy.  Life in a wheelchair is a thousand times better than no life in a laying room.  So often we as humans tend to get bogged down in the details that we have no control over.  But what good does it do us?  It is very easy for me to lament the life that Bella had for 8 years, to think "what if".  But I cannot right all the wrongs committed against her.  I can only come along side her now and show her a new way.  For the last six months we have made a concerted effort to keep the big picture in focus and not muck it up with senseless worry.  And that is exactly what I plan to keep doing...tomorrow, and the next day, and the next day.

Just before surgery...still smiling.

Backing Up...

I have a dozen blog posts swirling around in my head but can't ever seem to find the time and energy to put them into actual words.  I have to back way up to the end of March to get caught up, and it has me thinking about how quickly things change in life...

On a beautiful Monday morning, we dropped Bou off at school and headed for the local beach park.  Buddy rode his scooter while I followed behind with Bella in the stroller.  Things were just right.

Forty-eight hours later, things were all wrong.  Bella had been vomiting for 24 hours - she could literally keep nothing down.  She also had a fever and was complaining of both head and leg pain.  It was almost exactly the same scenario that played out when she broke her hip.  I didn't know what was going on (although I had a very good idea) but I knew that it was something serious.  When Bella broke her hip, she became a different person.  The normally happy, talkative girl became withdrawn and silent - markedly different.  The same thing was happening now.  By six pm I felt she had to go to the emergency room.  I packed a small bag for us because while I didn't know exactly what was happening, I knew we weren't coming home that night, and that she would be admitted to the hospital for whatever it was that was causing these symptoms.

Bella has a complex medical history, and I am very careful about choosing which details regarding her health I share on this blog.  I realize that I haven't talked much at all about what her diagnoses are.  That is because I think about her teenage years, when egos and self-images are fragile.  I wonder how she might feel about her friends (or people who aren't her friends) finding her mom's blog and reading about her diagnoses.  I think about her adult years, when a potential employer might pre-judge her abilities (as so many others already have) based on the labels she has been given.  So while part of me wants to share so much more about her health, a bigger part of me feels the need to protect her from the cruelty that lurks in cyberspace.

So if I am vague, that is why.  Anyway, when we arrived in the emergency room I honestly expected to be seen immediately given her history and the current symptoms she was having.  We checked in and were told to have a seat in the waiting room.  After about 20 minutes she vomited everywhere, and then we were taken to triage.  From that point on, things moved quickly and efficiently.  She was taken for a CT scan of the head, then for xrays of her hip and leg to rule out any problems with the recently repaired fracture.  Before the xrays were completed I turned around to see her neurosurgeon standing in the doorway.  He began to tell me about the swelling she had in her brain, and how she needed to go to the operating room that night to relieve the pressure.   It was what I had suspected based on the extreme vomiting, but I was still shocked to hear it.

Bella was in the operating room very shortly, and though I sat alone in her hospital room during the wee hours of the night waiting for the surgery to be over, I felt very much at peace.  I messaged a couple of fellow adoptive moms with special needs kids and they made me feel very supported.  When she emerged from the O.R. with head half-shaven my stomach knotted up a little.  Her growing blond hair had been symbolic - its length marked the passage of time since she was freed from the orphanage, since the very last time they shaved her head there, as was the norm.  This was a setback in more ways than one (of course I realize that hair grows back, and it really is insignificant in this kind of situation, but I am just describing how I felt at that moment).

She came through the surgery in usual Bella-style:  with flying colors.  In fact, the next day I think she looked better than she'd ever looked before.  Maybe it was because she finally FELT better than she'd ever felt before too.

 

After spending a few nights in the hospital, she was discharged on March 23rd,  the same day we'd planned Bou's seventh birthday party - aaaggghh!  Somehow we pulled it all off that day even though the party didn't go as I'd originally envisioned it.  With Bella in the hospital, I had no time to put together the activities I'd planned so entertainment came in the form of a last-minute bouncy house rental (not sure if this is just a Hawaiian thing or what, but everyone here rents bouncy houses for just about any type of celebration). 

 Woo Hoo!

 We did do Shrinky-Dinks and the girls liked watching them shrink in the oven :)

 The impromptu cake - thank you to my friend who went to Costco and got it for us, otherwise we may have been eating graham crackers with candles stuck in them!

So the party wasn't Pintrest worthy - not that any of my kids' parties are, haha!  That was okay.  All that mattered was that our entire family was under the same roof once again, everyone was still healthy, and my little girl had a great birthday with her friends.  That night after all the kids were asleep, I walked in their rooms and kissed each forehead ever so lightly, so as not to wake them, and then I just thanked God.  Because, as we've learned in the last five months, there is nothing better than having all three precious little people tucked safely in their own beds with Mama and Daddy just down the hall.  

 So blessed to have this beautiful, fun, tender-hearted, nature-loving child as my daughter.

Bump in the Road

Tomorrow is our ten year wedding anniversary.  This photo was taken by my friend Amy when Rob returned form his last deployment a couple of months ago.  When I look at it, the emotions of all of our reunions come flooding back - I can actually FEEL them.  Each time he returns I feel as if we've accomplished something - our family bonds are even stronger.  Our world is right again, because as long as we are together we can do anything. 

This time last year, I envisioned us having a romantic weekend alone somewhere - maybe one of the neighboring islands - to celebrate (something we never get to do!).  Of course our lives have taken a different path and earlier this month we found ourselves enjoying time together as a new family of five, amazed and overjoyed at how easy it was to incorporate Bella into our home.  And while we realized that having a newly adopted daughter eliminated the possibility of a romantic weekend alone, we certainly did not expect to be where we are tonight. 

Bella was not herself earlier this week.  We initially thought she had a viral illness because she developed a couple of mouth sores, followed by a fever and vomiting at dinner.  Throughout the following day it became obvious that she was also in some kind of pain but we could not identify what was wrong.  On Thursday morning I took her to the doctor.  Other possible causes for her behavior were ruled out (at this point she was like a completely different child, not smiling or wanting to be touched at all).  The physician blamed her leg pain on her hip dislocation and muscle spasticity, but I was not convinced because the dislocation was pre-existing and had never bothered her like this before.   We discussed the possibility of a broken bone, but everyone agreed that was not the cause since there was no swelling or discoloration/bruising of the skin.  However, a pelvic xray was done and it showed a probable hip fracture, which was confirmed by CT scan.

So Bella was admitted to the hospital with a broken hip and scheduled for surgery the next day (Friday morning).  The operation went well and she is recovering in the Pediatric ICU for a few days, with an epidural pump for good pain control.  The surgeon remarked that when she opened her up her bones were like pretzels - and as a way to describe just how frail Bella is, she jokingly said that she wanted to tell the team not to breathe on her for fear that something else might break.

Finding out that your child has a broken hip that requires surgery and hospitalization just three weeks after discharge from the first hospital stay for malnutrition is very upsetting.  It was the first major bump on this journey.  The surgeon assured us that the fracture was inevitable due to years of laying on her right side (to the extent the her left femur is curved from being draped over the right leg in a side-lying position for so long), having a severely dislocated left hip, very poor nutrition, and osteopenia.  She said the real blessing is that it happened HERE and not in the orphanage, where it would have likely been lethal.  So there is the silver lining in the cloud of despair that we feel for our daughter, who has one more medical hurdle to clear.  

Yesterday though, my heart leapt with joy when she began to really wake up from anesthesia and it became clear that our happy, vivacious Bella was back.  It was such a relief to know that the pain was gone and that she is once again handling hospitalization so well.  I've said it before - her spirit is amazing.  As a wise friend wrote to me today " Bones heal and nutrition will improve again. Her heart is the key to the long term and it seems well fed by your loving family."  Bella, your family indeed loves you, we are so happy to have you with us, and we know the road to good health is long for you but worth every step.  Remember what I said - as long as we are together we can do anything.