Nothing is Going to Slow Her Down!

Jia continues to do really well.  On Wednesday she sat in a chair for a few minutes.  On Thursday morning she walked around the hall.  Thursday afternoon they removed her morphine which meant she got rid of several monitors.  Then they told her she was clear to go to the playroom.  That was all she needed to hear!  We had to make her come back and rest (thankfully the playroom is only open for about 2 hours each morning, afternoon, and evening).  Friday all she wanted to do was stay in the playroom.  She got kind of grouchy about having to rest.

While changing her diaper we noticed an issue with her stitches so we had to stay in the room until the surgeon made rounds.  Thankfully Jamie, Bryan, Harrison, Zeke, and Lillie Mei arrived around 3:00 and made a hug difference in Jia's attitude.  Jia's urine also changed color.  The doctor wasn't worried about the stitches, said they look fine.  They think the blood in her urine is from the catheter balloon irritating her bladder from moving so much.  She's been in bed since 7:00 last night and so far the color hasn't changed back.  Please pray that the blood will stop and she will be clear to go to the playroom again.  They don't seem too concerned about it but I would rather have no issues at all.

Thank you all for your many cards, prayers, virutal hugs, and encouraging comments. 

Keep Praying for that Urethra and Bladder

So we finally met with the urologist today.  This is the doctor who first told me in March that we would be coming home with a vesicostomy, he made me cry that day and he felt bad about it.  He assured me that day, then on the phone last week, and in the hospital on Monday that he was going to do what was best for Jia but he knew I how felt about the vesicostomy.  He walked into the room today smiling and looking at me and said, "How happy are you?"  Of course, he knew I was thrilled with the outcome!

Jia has a foley catheter in place right now (this stays in her bladder and drains urine into a bag while everything heals).  His current plan is to keep that in for 3 weeks.  When he removes it he will put her to sleep and run a camera in there to see how it looks and to see if we can cath her.  He thinks she will need intermittent caths forever because he doesn't think her bladder will empty on it's own.  She could still need a bladder surgery as well.

I take what he says seriously because he's a very good urologist but he told us we were going to come home with a hole in her abdomen also.  I am so thankful for what God has already done. 

I need you guys to pray that her little urethra will heal quickly and we need her bladder to get stronger and bigger (it's about 1/2 the normal size). Jia had some bladder control prior to her spinal cord surgery in December.  After that surgery she couldn't stay dry.  We need that control back so she can go without the catheterizations.

Also, please pray that this rash will go away.  She's miserable when she's awake.  She has now been 60 hours without any solid food and almost 48 without any liquids.  She has complained a little about being hungry and thirsty today but it hasn't been too bad.  Pray that God would just remove her desire for food and liquid.

Thank you all!

Giving Him the Glory!

Warning- I'm just going to lay it out here because for you to understand how amazing today was I have to give details about Jia's anatomy.  I can talk about it like I'm talking about my toe so I apologize if it's too graphic.


Jia was born with a colorectal deformity.  Most girls are born with 3 openings, Jia was born with one, one that mostly resembled a vagina.  Everything came out of that one opening.  After several surgeries in China she had 2 openings, one that resembled a vagina and one for poop.  That is what she came home with and has had until now.  She knows when poop is coming but does not have the ability to stop it.  They don't think she ever will.  We do an enema for an hour every day to clean her out and she has no problems with that.  She wears diapers because she doesn't have control of her urine.

The point of this surgery was to separate the vagina and the urethra.  We were told in March that her urethra didn't look good and she would have to have something called a vesicostomy (a hole in her abdomen that urine would drain out of).  The purpose of this was to give her bladder a break as it was under a lot of stress that could lead to kidney and bladder infections.  They could do this through catheterizations but her urethra ended too far in the vagina to cath. therefore she would have to have the vesicostomy.   After a year they would consider taking down the vesicostomy and putting in a port to cath her through her abdomen if her bladder could improve.  During the year she would not be able to swim or sit in a bathtub.  I know it's only a year but I had a really hard time thinking about that since she LOVES the water.  We were told yesterday that there was a chance of suprapubic catheter if things looked better than they expected.  This would give her a litte more flexibility than the vesicostomy but still not a great outcome.

Guess which one she got?  NEITHER!!!  They were able to pull her urethra down to create a normal opening!  If her common channel was less than 3cm they should've been able to create the normal opening.  Jia's was 3.5 and they were still able to do it!  We still may have to do intermittent catheterizations if her bladder doesn't improve but we are praying for that bladder starting NOW!  Do you know what that means?  Yep, she can swim!  Another huge blessing was that the surgery only lasted 4 hours.  We were originally told 4-6, then 8 hours but she was out in 4!

I completely believe God answered our prayers for our sweet girl.  Her road ahead is not going to be easy but it is so much better than what we were first told.  I am so thankful and humbled by all of you who prayed for her!  Please continue to pray as we have been told she may go 7 days without food or water for her little body to heal.  It will be at least 4 days and possibly 10.  She will be fed through her PICC line.  Also, pray for that bladder to grow and heal over the next few months so she can have urinary control withouth catheterizations.

I know I rambled and probably have typos but wanted to explain it as best I could.  Much love to you all!

Swimming, Swimming with Friends, Reds Game, Swimming, Chinese Food, Swimming...

We arrived in Cincinnati on Thursday night, June 21st, Lillie Mei's 6th birthday.  I was not a happy mommy leaving my youngest on her birthday.  That's the most difficult part of being a mom of four, you are always doing what's best for one or some of your children and leaving the others with what is not best for them.  Lillie Mei, Zeke, and Harrison were left with my sister, Renee, and her family and were very well taken care of but it's never easy to leave them. 

Friday morning we met with THE doctor, Dr. Pena.  He is the guru of colorectal surgery.  The best in the world.  We met him for the first time in January 2011.  He explained the surgery to us and answered our questions.  In the afternoon we had another bladder/kidney ultrasound.  We will meet with the urologist in the hospital tomorrow.

Jia will be admitted to the hospital at 8:00 in the morning.  Her IV will be placed at 9:00 and at some point they will run a tube down her nose to begin "cleaning her out" for the surgery on Tuesday.  I dread it with a passion.  I can't type this without tears filling my eyes.  There is nothing worse than knowing what your child is about to go through and not being able to do anything about it. 

She knows she's having surgery and will be staying in the hospital and that one of us will be with her every single minute.  She doesn't know that she will not have any food or liquid in her mouth for at least 4 days after tomorrow.  She doesn't know that if the urologist does what he expects to do, she will not be able to swim for almost a year.  I know those things and I dread it more than anything for her.

So since we got here we have been swimming as much as possible.  I think she jumped in the pool at least 100 times today, she loves it.  She also ate anything she wanted today including Chinese food for dinner (in the room because it would take time away from swimming to go eat in a restaurant).  We did squeeze in time to see some wonderful friends who we met on our adoption trip to adopt Jia in China--they just happen to have a pool!  We also went to a Reds game where she ate alot!   Somehow spending this alone time with her makes it all seem like it will be a little easier on her this week. 

Lillie Mei's Birthday just before we left

Playing with Avari and Max

 Jumping the 99th time!

Just a cutie!

Cincinnati 6-2012

It's been so long since I posted to the blog I decided to do a test to see if it works.  It took me forever to re-set the password to even access it!

Heading home!

Tomorrow we have an x-ray and then see the doctor at 10:00 and then we get to go HOME!  This visit has been a wonderful experience in almost every way.  We got lots of answers and some solutions.  Jia is doing really well with her treatment.  We have met many new friends who share the same condition as Jia and now have people we can talk to and ask questions when things aren't going so well.  I am so thankful to God that we found our way here.  He has blessed us in so many ways! 

More X-Rays

Today Jia had another abdomen x-ray.  She has become a pro at them.  She knows where to go and that mommy has to wear a special apron before they take a picture of her tummy.  We then met with the urologist.  We waited over 1 1/2 hours before we saw him.  It was hard but considering all of the appointments we've had, it wasn't too bad.  He said that Jia's bladder function is unknown and we won't know for sure until after her surgery. 

We went to the Children's Museum afterwards and it was incredible!  If the snow doesn't keep us in we will probably go back there on Wednesday and Thursday and I will take my camera this time. 

Please pray the snow doesn't keep us from coming home on Friday!