Saturday, June 15, 2013


Exactly six months ago tonight you were greeted by your new friends and family at the Honolulu Airport.  Everything we've done has been worth it - you are worth it!  We love you very much.  When you are out of the hospital and safely back at home, I want to write more about these first six months with you.  But for now - WOW, just look at you!  Your light shines for all the world to see. 

Thursday, June 13, 2013

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.

Monday, June 10, 2013

Maui in Pictures...And a Little Announcement

Since my last post, Bella has had another hospitalization.  Less than two weeks before our annual vacation to Maui, she had a grand mal seizure with a fall that resulted in a small subdural hematoma (bleeding around brain) and broken wrist.  It was traumatic for all of us, but thankfully after just two days in the hospital for observation she was discharged home.  A follow-up head CT one week later revealed that the hematoma was gone!  However, Bella was still extremely weak and unable to do anything for herself.

I wasn't sure how vacation was going to go - I hadn't envisioned our first vacation with Bella quite this way.  She handled the very short flight (only 20 min) beautifully once she was propped comfortably on a pillow.  She was also able to rest a lot in Maui, and we noticed her strength really start to return once we got back home a few days ago.  I think the vacation was just what we ALL needed!  Now we are refreshed and ready to face her other surgeries scheduled for this month, which I will post about later. 

So rather than describe our week there in words, I'll let you see it for yourself :) 

We've arrived!  We stay at the same place every year, and this trip is much anticipated by all.

First order of business...LOTS of swimming, water-sliding, and rope-swinging in the awesome pools.  Bella preferred to listen to music in a lounge chair under the shade of an umbrella most of the time, as she was still recovering.

Beautiful sunsets.  Never get enough of these.

Beautiful girls with flowers in their hair.

Some playground time with Daddy.  

Maui Ocean Center - another annual favorite.  

Nighttime walks through beautiful gardens to feed the fish.

Time for silliness, more silliness, and oh yes extreme silliness!  The photo above is one of my favorites of the three kids - so representative of their individual personalities!

 More swimming til we all pass out...

Another rare photo of all five of us.
And an even rarer photo of just the two of us - taken by Bou.  And no, I am not getting bigger because I'm eating too many fish tacos and brownies.  Okay maybe too many brownies, but that's nothing new.  I am pregnant :).  We are having another baby in just a few months!