Recovery...

...is not going so well.  I'm so exhausted from this I made the decision on Friday to ditch the elbow restraints when she is in bed without consulting the surgeon.  She NEEDS to sleep and couldn't with them on.  And I mean really couldn't.  Most nights she wasn't falling asleep until the wee hours and some nights was waking up in the wee hours, unable to go back to sleep.  The hours she was asleep she was still very restless.  Most naps were no more than an hour.  The time that she is not able to sleep is spent screaming.  Just by her so far.  Not me yet.  All her screaming and lack of sleep cannot be conducive to healing.  She is also managing to get her hands in her mouth with the arm restraints on anyway.  She only puts her hands in her mouth when she is upset.  The elbow restraints make her upset so to me it is logical to keep them off.   

Her repair looked beautiful especially after the stitches had dissolved.  Gradually though we noticed it looking like it was being "sucked up" into the cleft.  No fistulas (holes) though.  On Saturday she was eating yogurt and some came out her nose.  Sign of a fistula.  We didn't want to believe it so checked and there was a anterior fistula along the indentation.  I cried.  I always said that a fistula is going to happen if it is going to happen: Outside of preventing trauma to the site, there is nothing you can do.  I still felt that there was something we could have done or not done to keep this from happening.  Maybe ditched the elbow restraints sooner?  We see the surgeon on the 21st and are of course anxious to hear what she suggests.  I suspect she will want to wait and see if it impacts Anna's speech and to what extent.  Some kids have them and are able to speak fine.  We are still so disappointed for her.  

She is drinking and eating pretty well.  She is still not back to where she was with eating but I think there may be some teething going on which would impact this.  

So Many Hands

Thursday was the big day.  Anna's palate repair.  I hope I can convey the scope of thoughts and emotions that came with this but I doubt I will be able to fully.  Going into it there were so many fears: Fears of loosing her to the anesthesia were heightened because we had no medical history, fears of a difficult repair, fears of the recovery, fears that she would develop a distrust of us...  And on the flip side there was this opportunity for a full and complete life she would not have without the repair.  We were at CHOP at 7:15 AM and were promptly wisked back to pre-op.  She cried (as she always does) when her vitals were taken but stopped quickly.  There was an issue with ENT not being scheduled to insert the ear tubes but our nurse got it straightened out and the necessary paperwork completed.  She was given a "giggle juice" cocktail (versed for those of you who care :)) and had us laughing SO hard.  Our now dopey Anna had not one care or concern.  That and the professionalism and empathy of every single person we came in contact with while in pre-op made it so much easier to give her a kiss and say good-bye.  

She was out of surgery around 12:30 and very angry.  Daddy got her to sleep the way only he can.  Another dose of morphine helped too.  She had a lot of gurgling (swallowing was now different) and soon after slipping into a deep sleep would stop breathing momentarily (breathing was now different).  She plays with hair to comfort herself but couldn't do that well now on account of the elbow restraints which are necessary so she doesn't put her hands in her mouth and rip out stitches. 

 To close her palate, two lateral incisions were made on either side of the cleft and then the cleft was sutured together.  While her palate was moderately wide, her mouth is very small.  The combination didn't make it the easiest repair for the surgeon but she said all went very well.  Her palate appears to be normal in length which is important for proper speech and avoiding future surgeries.  After being in recovery for about an hour, Anna was admitted to the surgical floor.  It was a long afternoon and evening.  There was a lot of difficulty controlling her pain.  She was gurgling and choking and would stop breathing momentarily.  It had to feel like she was drowning.  Her eyes conveyed so much raw fear and physical pain.  I will never forget that look.  She couldn't sleep because of all of this but was completely exhausted.  I kept telling her how strong she was, that she was going to get through this.  She eventually ended up sleeping for about 30 minutes after which her heart rate was lower and she was much more calm.  Her brothers and sister came for a visit and brought balloons.  She gave a small reaction that she was happy to see both.  Matt stayed with her overnight and I brought the other three home.

 

We were fully expecting to have to stay another night and her surgeon suspected this as well.  Anna couldn't leave until she was drinking and eating, and due to the pain she wasn't interested in either.  She slept for hour and two hour increments through the night.  Not much but enough that she was doing much, much better than just 12 hours prior.  Her surgeon sat with us for a bit in the afternoon and watched Anna down a yogurt and get mad that she couldn't hold her bottle herself.  Even though Anna had not drank much more than an ounce total, her surgeon thought she would be fine to go home!  Shortly after she left though the surgical resident came and checked in and encouraged us to stay another night if we didn't feel comfortable taking her home yet as dehydration is a main reason palate repairs return to the hospital.  I said, no, we'll be fine.  Should have checked with Matt first though as I was evidently feeling much more confident than him.  We ended up choosing to be discharged anyway (by none other than Kara Detweiler!!!).  It was a good choice.  After we got her through a SERIOUS constipation issue in the comfort of her own home (sorry - need it in here for the record) she slept great through the night and was eating and drinking fine today.  

 

We were astounded at the number of people involved in her surgery and care.  Completely.  The amount of talent and professionalism present in those hands went above and beyond what we have yet experienced in the realm of medical care.  I looked around at options for her repair and am so thankful doors to other places simply did not open.    

Three Months Home

We had a follow up IA appointment at CHOP on January 20.  Anna has made HUGE measurable strides, the biggest being in fine motor where she gained 10 months in the 3 months home.  The best news though was that the DR and OT were amazed at how well attached she appeared.  I attribute this to lots of unconditional love, just as much prayer, seriously good OT and her foster Nai Nai. 

She is learning as many signs as we can teach her.  Her hearing loss is starting to become an issue as words are becoming increasingly misunderstood (chair, hair; try, cry; etc.).  She is showing us an eager to please, fun loving personality.  In the below video you can see the two year old testing too.  She is signing "sit down" when she sees me watching her.  She signs and sounds "thank you" when she makes up her mind to do what I'm telling her to, rather then when she actually does it.  She does this all the time and I find it hilarious.  Don't mind that I let her play up on the coffee table.  I'm thrilled that she is able to get up and down on her own. 

 

Six Weeks Home

Sorry the update took a bit longer than the weekend :).  It took two weeks home of adjusting to the time change.  During those two weeks Anna was starting her day between 1 and 3 AM and would go strong until after lunch.  I had to wake her from her afternoon nap and she was typically not at all happy about it.  Those meals some of you provided were soooooo appreciated through those days.  She was extremely withdrawn and reserved during those first two weeks also.  At bedtime and naptime however she would rage for at least an hour before she fell asleep while being held.  Our other three were beyond thrilled to just have us and her home.  Thank you Jesus for that because there really would have been nothing left of me to give if they were in need.  Natalie especially just sat by Anna and waited for her to be ready.  We had never seen our big girl so patient but yet persistent.  Those first two weeks were truly brutal.  We knew it would be but I don't think anything could have fully prepared us on how to contain her grief and fear, support our other three, integrate her into the family, process all the depressing developmental assesments, catch up on work and bills and unpack on VERY limited sleep. 

Two days home.  They still will do anything to make her smile!

By the end of the third week home (first week in November) we were seeing a bit more of the Anna we saw in China and her days and nights were straightened out.  She was raging less, if at all, before going to sleep and was cuddling more when being rocked. 

No longer content running after the ball.  She wants her own stick too! 

The last three weeks have held the excitement of meeting with a CHOP plastic surgeon and envisioning her life with a repaired palate, teaching her some basic sign language and watching her go overboard on communicating, seeing our other three making up silly sentences using just their limited sign vocab and experiencing a much more relaxed, regulated and connected Anna.  Many days the hours are longer than the days themselves but we really are slowly progressing.  Some things I am looking forward to...  A second cleft repair opinion although her surgery is scheduled for February 3 at CHOP, expanding her signing vocabulary, starting a Mommy and Me gymnastics class (because we just need to do something fun together!), putting on her new Christmas dress and getting photos taken, watching her open Christmas presents, having her molars cut through (grrrrr...), reading through an entire book with her. 

Play Doh play is stressful but necessary.  Holding her doll helps her cope. 

Heading Home!!!

Anna is tucked in, all is packed and Matt is checking us out of the hotel.  Tomorrow we leave here at 5:45 AM for an 8 AM flight to Beijing.  We depart Beijing at 3:45 PM and arrive in Newark at 5:15 PM (add in 12 hours for the time change).  We are SO excited to get home that there is almost no dread in traveling that long with a 2 year old!  Almost :).  THANK YOU to all of you who commented and sent us emails through our time here.  That support and our faithful God kept us focused.  Each and every correspondence was saved and will be part of Anna's story!  I plan to update upon returning home and say a bit more about our time here so check back after the weekend.   

Happenings Update

Yesterday we made it to the jade and pearl markets.  Aron told us that much of the jade for sale is fake but looks very real.  There was one store in particular that she likes because of the owner's history in the jade market and the store's certification level.  It was a lot of fun looking through the different grades of jade and figuring out which look I liked best.  Watching Aron negotiate the best price for us was a highlight too.  She is so kind and fun but I'm sure glad she is on my side!  The masses of people continue to leave an impression on us.  The landscape is one apartment building after another.  We look out our hotel window and see cranes everywhere building higher and higher.  The population in the immediate city of Guangzhou is over 10.3 million and it is only China's third largest city.  To compare, Philadelphia's city population is 1.54 million.  As is our custom, Matt got an ice cream treat for enduring shopping.  Anna seemed herself again (as far as we could tell) and Matt was much, much better so we opted to go on the dinner cruise.  There were two other adoptive families on the cruise that we were familiar with and had a great time talking with them.  The one family is currently living in Shanghai and the other is from Texas.  The Texas family adopted a now 14 year old boy who is deaf and mute.  They were in a race to finish the paperwork and complete the provincial side of his adoption before he turned 14 because in China after age 14 a child is ineligible to be adopted.  This boy was such joy and his family so amazing that we couldn't stop watching them.  They were ordinary people but truly living an extraordinary life.  Oh yeah, seeing the lights of the city was neat too :).  

Today we had our Consulate Appointment and completed the final step in obtaining Anna's visa to enter the US.  Aron treated us to dinner at the Guangzhou Restaurant and it was by far the best food we have had since we have been here!  She is originally from Inner Mongolia and therefore has a taste for food that is very similar to ours.  BIG relief since she was treating and therefore ordering.  In China food is ordered and served family style.  It is considered cold and rude if you order your own platter.  The most "interesting" dish she told us about was Tiger and Dragon Fight.  Use your imagination and ask us later if you are right.  It was equally wonderful to have an extended period of time to talk with her.  

Tomorrow we are picking up some last minute souvenirs and packing for HOME!!!  Friday is almost here!!!!!

Getting Better

Last night Matt and Anna (and thus myself) slept much better.  Anna needed yet another dose of ibuprofen at 11:15 PM but was ok with just Tylenol this AM.  She is napping now.  If she seems ok we are going to go to the jade and pearl markets this afternoon but are prepared to cancel last minute.  This evening we are scheduled for a dinner cruise down the Pearl River.  We are prepared to cancel that last minute as well.  Matt too was feeling a lot better today and is also napping now.  After breakfast we did some quick gift and souvenir shopping around the hotel and got some squeaky shoes for Anna.  Most of the babies and toddlers we have seen have them on.  They have little squeakers in the heal so when the child or baby walks they squeak.  Like light up shoes with squeakers instead of lights.  Matt said "no way" to them until the sales lady showed him he could take out the squeaker.