Anna at Home

Sorry that it has been so long since I have written.  Anna came home two weeks ago today and it has been a little crazy!

Overall, she is doing very well.  She has her own recliner in our family room, so she is always surrounded by a bunch of people.  Everyone stops and talks to her as they go in and out.  She tracks us very well with her eyes, which is a good sign.  She sleeps well most of the night.

It has been interesting learning to take care of a medically fragile child.  It was nice when trained nurses did all the work of administering medicines, setting up feedings and doing breathing treatments.  To someone without any medical training, it is a little daunting.  On top of that, Scott had to go out of town for several days just after she got home, so I had to be very responsible, and I don't always like that :) 

It has now become fairly simple to do everything, but we have had one problem and it is serious.  Anna has a g-j tube.  This tube goes directly into her stomach.  She receives her medicine through the g-tube.  The j part of the tube goes into her intestine and she is fed her formula through that.  This is to help prevent reflux and aspiration.  The j-tube is very tiny.  It clogged a week after she came home and then shifted back into her stomach so we had to get it replaced.  The new one shifted two days later, was repositioned and then shifted again.  This is a serious problem because every time it shifted, she would wake up in the morning vomiting.  Also, to get it replaced or repositioned, we have to drive back to the hospital in Atlanta, which is almost two hours away and it is has to be replaced by using an x-ray machine and she is getting way too much radiation.  Yesterday, they could not get the j-tube back into her intestine, so she is currently being fed through her g-tube.  So far so good, but this may not be a permanent solution.  We have an appointment with her GI doc tomorrow, and would appreciate prayers as we figure out what is best.

 

So bored waiting to have her j-tube replaced again, she fell asleep

I was disappointed about having to take her back to Atlanta yesterday as well because she was supposed to be evaluated for therapy.  She has not had anything but what Scott and I can do since she left CHOA and I don't want her to lose all the progress she was making!  Hopefully we can get it rescheduled soon.

She is just the happiest little thing and is all smiles and coos unless she is in pain or extremely tired.  She puts me to shame.  She seems to be enjoying her new family and absolutely loves her new crib.  She smiles hugely when we put her in it at night.  She loves her recliner too.  I'm afraid she is getting lazy :)

As for me, this has been a rough two weeks.  Change, even good change, is tough.  We have all had to adjust to a new normal.  My flesh has been rebellious, not always wanting to drive to Atlanta when necessary or get up at 2 am to administer medicines.  God has been exceedingly patient as he has worked at cutting away the dead parts of me and infuse me with his life and love.  I have alternated between stark terror and soaring love.  I am so far out of my comfort zone here that I feel like I have moved to a new zip code.  I have climbed out of the boat and am walking on water.  I wish I could say that I am keeping my eyes firmly fixed on Jesus, but I hate to lie.  I look at the waves a bit too often. 

My coworkers at LaGrange College have been incredible!  I can't remember the last time I made dinner.  They have surrounded us with love and I am forever grateful.

So, in a nutshell, I'd say Anna has fit right in.  Everyone adores her and she is basking in the attention. She has gained 7 pounds since we arrived from Bulgaria.  God told me clearly yesterday that he knows exactly what will happen with her feedings, and that it is ok that I have no clue.  I am trying to trust in that. 

 

Celebrating her first Father's Day with a father

 

Miracles

Anna's g-j tube is in.  No more uncomfortable tube down the back of her throat!  If all goes well, she should be able to come home on Monday.  I am so excited!  I can't believe that day might finally be here.  She is absolutely going to rock our world around here.  I can't wait to watch her win over her siblings and grandparents the way she has won over everyone at the hospital.    The therapists have told us they fight to be on her schedule for the day.

 

While she was under for the surgery, they performed a hearing test.  According to the test, she is moderately to profoundly deaf in both ears.  This is quite simply not true.  Anna responds to our voices.  She knows mine and her daddy's.  She loves music!   If I sit my iPhone next to her and turn on a song, her eyes immediately widen and she calms.  She is also the favorite of her music group at the hospital because of her awesome dancing.  We are getting her hearing aids, but I know she is hearing more than the tests show.  This is not the first example of how Anna defies all evidence she presents medically.

If you were to look at her brain scan (and actually knew what you were looking for, LOL), you would think she was basically a vegetable.  Because of her hydrocephalus, her brain did not really develop.  But of course, you've all seen the pictures and video that show that Anna is vibrantly alive and full of personality.  She learns at an almost scary rate and changes daily.  In fact Scott was talking to one of her doctors today and even she acknowledged that Anna can't be explained.  She described her progress as phenomenal.  She has wowed them all.  She is a living miracle.

I am so blessed to be a witness to all God is doing in her life.  I am so very ordinary and she is extraordinary.  It is a testimony to God's grace that he has allowed her to be my daughter. 

My experience is not unusual.  Check out this miracle and this one from the same orphanage as Anna.

Interested in being part of a miracle too?  Here are some children who are just waiting to rock your world and show God's glory to the world!

Lucy and Linus



Reign




Velia



Phoenix

Anna Update 5/30

Well, I would love to be able to report that Anna is home with us, but she's not.  I think she is getting closer, though.

Her lungs are doing much better.  The pulmonologists are very pleased with how she is healing.  She is still receiving therapies, and occasionally oxygen, but we are tickled pink with her progress.

Tomorrow she will have a g-j tube inserted.  This is a type of feeding tube.  It would be problematic for her to come home with her n-j tube (which is inserted through her nose) because if it comes loose, we have to travel all the way back to the hospital to have it reinserted and the hospital is almost two hours away.  The g-j tube should be more stable.  I would think more comfortable as well.

No one has mentioned when she might come home after the surgery, but if things go well, I hope sometime next week.

During all this time, she has been receiving outstanding physical, occupational, speech and music therapy at CHOA.  Her progress is mindboggling!  She is holding up her head which I never thought would happen without the cranial reduction surgery.  She is gaining weight.  Her brother who hasn't seen her in weeks, commented yesterday that her arms look "fat."  Yippee!!! Fat is definitely good for this girl. 

Hopefully my next post will be to let you know she is home!

Mother's Day

This Mother's Day holds very mixed emotions for me.  I am so happy and thankful to now be the mother to nine of God's precious children.  But Anna is still not with us and that makes it hard. 

We were told that she would be discharged on Wednesday if she were stable enough.  Scott and I took Owen, our 22 month old, with us and joyfully went to finally bring Anna home.  We quickly realized that that wasn't going to happen.  She was still desatting and spiking fevers.  The doctors ordered a CT scan of her lungs.

What we were told basically was that 1/3 of her left lung and 2/3 of her right weren't working.  They were blocked.  Without putting a camera in, they couldn't tell us why.  Most likely it was from chronic aspiration.  The children in Anna's orphanage were fed lying down for years.  Many died from this treatment.  They also told us that they might have to remove part of her lung if it was damaged enough.

I just didn't have peace about this.  I prayed that God would give her the best possible outcome and that no surgery would be needed.  My heart was just broken for all she had suffered.

At this time, I admit, I was hit with a feeling of dread as well.  I don't believe that that ever comes from God unless it is a warning.  This was just general yuckiness and fear, wondering if I could truly handle all of the challenges that Anna brings with her.  I also admit that it was my selfishness rising to the top again, feeling sorry for myself and missing how comfortable life had become before Anna came home.

And this is what God shared with me.  He is so faithful and patient!  He clearly told me how arrogant I was.  How completely and totally arrogant.  I was assuming that if he had not brought Anna into our lives, that our lives would have gone along all hunky dorey and roses.  No one else in the family would ever get sick, I wouldn't lose my job, no moronic terrorist would ever set a bomb down by my feet.  Oh, my goodness, how ridiculous I was being!  Of course bad things would happen.  And the safest place to be is in the middle of his will, even when it's hard.  After that revelation, my whole outlook changed.  Jesus said that we have to give up EVERYTHING to follow him.  And yes it hurts, but he gave up EVERYTHING to rescue us. 

On Friday, they performed a procedure where they looked at her lungs and cleaned out as much of the gunk as possible.  We received a really good report.  The pus was clear and they didn't see any need to operate at this time.  They have put her on a more stringent respiratory therapy and new stronger antibiotics.  The doctor also said that she was going "downhill fast" when we brought her in.  She didn't believe that Anna could have survived much longer without medical care.  Glory be to God whose timing is always perfect!  He brought her to us at just the right time.  I am knocked to my knees in humility at his perfect knowledge and my extreme ignorance.

I have stopped worrying about when she is coming home.  God has made it clear that only he knows and that that is good enough.  I admit, though, that today I miss her so much it hurts.

I know you all have been praying faithfully for Anna and for us.  Thank you from the bottom of this mother's heart. 

Anna Update 5/1

I hope you all will forgive me for my lack of posts lately.  Anna is still in the hospital, almost two hours away from our home.  In the meantime, I have to work and Scott and I still have to take care of our other 8 children, so time has been scarce! 

Anna is doing great.  I am overwhelmed with the changes God has brought to her life over the past month.  I cannot say enough good things about Childrens Healthcare of Atlanta.  God has used these doctors, nurses and therapists in mighty ways!  She is already sitting up so much better and is beginning to tolerate her wheelchair.  She has put on a little weight.  Her seizures seem to be under control.  Her lungs are finally looking clearer, so it appears that the pneumonia is abating.  She lights up around both Scott and me, so despite the craziness and having never been to our home, she seems to understand that we are "special" and is bonding.  She is still choosing not to eat by mouth and will be getting a g-tube within the next couple of days.  Once she has recovered from that surgery, we should be able to bring her home!

 Here are some pictures and video that show how well she is doing.  The first picture was the day we picked her up in Bulgaria.  The second is from Saturday and shows how well she is sitting up in her wheelchair:

The first video was taken in Bulgaria, when she astonished us with her high-fives!  The second was a week or so ago.  She is so happy!

God's grace has been truly sufficient.  I am amazed when I look back over the past month at how he has orchestrated everything.  He is teaching Scott and me so much through this experience. 

I admit that I still get fearful sometimes.  For the most part, having a child with severe special needs has become the new normal.  I don't worry about our future with Anna.  She is a delight and we are blessed to have her.  I can't wait for her brothers and sisters to meet her.  I especially can't wait to see the reaction of my 22-month-old who calls her "baby" (even though she is three years older than he is, he dwarfs her).  Now that I have accepted that God will give us the strength and means to care for this child, I think what he is working on now is my issues with money.

Anyone else out there have that issue?  I know in my mind that all I have is God's.  I know that he has never once let me down when it comes to my finances.  In fact, he has done miracle after miracle.  There is no way that we could have afforded to complete eight international adoptions in the past twelve years and afforded to raise nine kids on my salary.  It just doesn't add up!  And still I find myself dwelling on how we will pay for Anna's medical care (a month in the hospital, including two surgeries, and another major surgery coming up in about a month).  My insurance will pick up the majority, but copays and deductibles will still have to be paid.  I know God is able and I can't wait to share on here how he comes through!  Just pray for me to have a stronger faith in this area.  I am WAY out of my comfort zone here. 

I also know that that is where God wants me to be.  It is so refreshing to my spirit to read about other families in that same place.  I read about the Ayer family this morning.  What an inspiration!  Families like this that have given everything to God amaze me!

Lastly, my sweet Giselle waiting in an Eastern European orphanage now has a grant of over $5,000!  Could you be her mama or daddy?

Surgery is Done

Anna had a endoscopic third ventriulostomy yesterday.  This should allow her cerebrospinal fluid to flow more normally through her skull and ease the hydrocephalus.  The surgeon was very pleased with the results!  In about a month, she will be able to have a cranial reconstruction.  They will remove a large portion of her skull.  In a little less than two years, she should have a completely reshaped head, hopefully one that is not as heavy.  Maybe in time she will be able to sit up on her own.  Who knows the plans God has for her!

She is understandably a little irritable today.  They have given her something for the pain and she is resting comfortably.

I don't know yet when we might be able to get her home.  We still need to deal with her eating issues and get her some adaptive equipment.

Thank you for all the prayers!

Anna Update

Anna has now been in the U.S. for almost a week and has spent all of that time in the hospital.  Part of me hates that, as I cannot wait for her to meet her brothers and sisters and see her new home.  But in reality it has been such a blessing!  She is scheduled for her first surgery tomorrow.  It was originally scheduled for last Tuesday but they found some fluid in her lung and wanted to wait.

This surgery is a good thing!  It should eliminate the cause of the hydrocephalus and get the fluid in her head flowing as it should again.  The surgeons also told us that in about a month, they should be able to perform surgery to correct the shape of her head!  We didn't know if this would be possible.  She has a large bump on the back of her head that makes lying on it uncomfortable and it is so heavy that she has never been able to sit up on her own.  I can't wait to see what God is going to do in her life!  I feel like there is no limit. 

She has an NG tube now for her feedings, which is also a blessing.  It takes all the pressure off her and us to get her to eat and drink.  Once the surgery is complete, they will begin to assess her swallowing.

Thank you again for all of the prayers!  God is answering them!

I have two prayer requests today. 

First, remember sweet Henry who I posted about a few months back?  He was adopted and passed away after complications from surgery.  Well, his family has just announced that they are returning to Eastern Europe for a sibling group of three!  I am so excited.  You can read more on their blog here.  To donate to help them bring this group home, go here.

Our agency just posted this morning that on April 18, there will be a new hearing in Bulgaria for the old director of the Pleven orphanage who wishes to be reinstated.  It is because of the conditions that she allowed that Anna went so long with untreated hydrocephalus and weighs just 24 pounds at 4 and 1/2 years old.  Please pray that the courts will deny any petition she has!  For Nora and all the children we left behind there, she must never be allowed to step foot in Pleven again.  Please also pray for the new director, as she faces much opposition in all the good reforms she is trying to implement.

I will update after surgery tomorrow!