Thursday, February 27, 2014

Day 27 - Bella Strickland

It's amazing what you can go through in life in just 12 months.  This time last year we were still waiting on LOA for our daughter and now she has been home for months.

Since "28 Days of Hearts" 2013 we received LOA (letter of approval) the end of March, TA (travel approval) the end of April and flew out end of May.  There are so many amazing stories of love throughout our fundraising journey that I would love to share but more importantly there is so much more I need to share about Bella.

Bella's referral information (special needs) was the following:  CHD post/op (ASD & PS).  Tumor removed from her right eye lid, congenital cataracts and Aniridia (no iris) of both eyes.  

 With only one vague update in 10 long months, we were nervous to get to her to see what kind of health she was actually in.  After they placed her into my arms . . . well "placed" seems so gentle and peaceful . . . . . we should go with "tossed" . . . she was so upset.  A few minutes went by and she got more and more scared and angry.  It literally felt like she was fighting for her life all over again.  As I placed my hand on her chest to support her I could feel a hard almost sharp chest plate and nothing about it felt normal.  I was very concerned at this point!

My first thoughts were that this was one of those things I feared of not being prepared for, but later that night I was able to reach out to my Heart to Heart moms and they blessed me with facts and comfort.  I had lots of time reaching out since Bella would not let me get near her for three days after gotcha day.  HEARTBROKE MOM!!  You still can't help having that moment of "We really did this!!  Can we do this?  Wait we have to do this!"  and just wanting to get home to find out what our new future would look like.  And that's just what we did!

We hit the ground running after being home just three days the doctor appointments began.  We were blessed to be able to have all the specialists set up ahead of time waiting for her!

The formed her first "in the states" Echocardiogram and was having someone weeds through all the medical translated noted from all that had been done to her over the past 24 months.  He was very happy with how the heart repaired looked and said that was how he would have wanted it to look afterwards if he had done the repairs.  I was through the moon and so relieved at the news.  He said that by the sounds of her heart that there is defiantly leaking, some to be expected and some to keep an eye on.  Her chest plate was just due to her body's healing and at a later age we could put her in a special vest if needed.

I have to take a minute and express the excitement and "confirmation" I have in how God has worked each detail of care out for Bella's future.  No greater blessing that to have Dr. Terry King, "Pioneer Awarded" Pediatric Cardiologist for being the first person to implant and close an ASD in a human being as her doctor.  He has paved the way for what has been possible for so many of your own children in a cath lab.  He moved here from Ochsner setting up our NICU/PICU cardiac cath lab, started the first congenital heart disease program and founded the Ronald McDonald house.  This is why we are so blessed to have him as Bella's heart doctor.  No matter what was to come he would be able to care for her.

We go back each six months for now to check her Pulmonary Stenosis, the size comparative to her growth and the leakage from the Pulmonary & Mitral values.  Through all the check ups and out we are also learning how to be a new family and they (with brother Peyton) are learning what he means to have one another.

Next week we set out for a family road trip weekend to New Orleans Children's Hospital.  We had an appointment with the infectious disease Dr. for labs and a checked over to make sure she wasn't a carrier of anything from her country.  She looked great and labs were great!  Not even any need to go forward to a Geneticist.

Celebrating all her first along the way . . . BaBa had the best Father's Day ever with his son and now daughter that he had always dreamed of . . . .

Okay moving full steam ahead . . . Heart CHECK!  Blood CHECK!  NOW EYES!!!

We knew that Bella's eyes also reportedly had serious issues to be unfolded by specialists.  We had researched and knew if this ended up being true, she could go blind.  We had her eyes explained and tested.  As the Dr. was looking into her eyes and don't know who held their breath longer me or her daddy.  Just a few looks and Dr. H said she did NOT have Anrindia first of all she an eye defect called Coloboma, which was just the color issue of the eyes didn't continue around to complete the circle.  Praise the Lord that she wasn't going to be blind but Coloboma does cause congenital cataracts and she had one on each eye.  Our calmness was quickly gone when he turned and said that she was completely blinded from the cataract in the right eye and because he didn't know at all if she had it at birth or only a few months, he had to remove it Monday morning at 5am.  He seemed so eager but the truth was there was not a magic number of days when the brain would stop telling that eye to function and when that day came there would be nothing we could do to get it back.  So first thing Monday morning Bella under went the removal of her cataract lens and I new one was replaced.  

We stayed close to the hospital in a hotel for two days just to make sure we wouldn't have any problems.  She did great and didn't seem to be in a lot of pain.  

We started patches the next week over her other eye trying to make her weak eye strong and waited for the call that her eye glasses were ready!

She was so happy the day she got her glasses!  I had no idea just at her young age what it would mean for her to really be able to see!  You could not tell by her actions before that she was blind at all until we saw her actions afterward!  NEW LIFE!

She loves the WATER more than anything.

We were given a 2 1/2 year old that was sad with no one to love her, thin 24 pounds with all her ribs showing, small in 12 months clothes that couldn't run three steps ahead, broken with CHD, and blind with cataracts.  In what now feels like forever ago, we have watched her be given sight.   Grow to become a good eater; she loves meat of any kind.  Get strong through physical therapy, running, swimming and playing ball.  Learn skills with special education, she loves puzzles and drawing the most.  Grow with a whole new language through speech therapy.  It is truly remarkable of how much they pick up so quickly with English.  She loves bossing her older brother around!  She is a very active and normal three year old little girl now that just doesn't like to sleep without momma in the room.

After being in our arms 9 months "today"!  I have to tell you what a miracle she is to have in our lives.  And as she is sitting right here beside me now in her beautifully bright red time out chair, telling me how much she loves me so she can get up quicker . . . (BIG smile) I encourage you to search your heart for special needs children that have one important special need, the need for a chance to grow with love and care and they all will show you how they will beat all the odds stacked against them.

The truth is, it's hard but I wonderful kind of hard, a kind of hard that you surprise yourself because you are shocked that you got through it and all that this process makes you accomplish as a person.  There are times throughout the journey that you freak you and even fail but each day is a new day and a fresh start to fight for a precious life, your child.

While these sweeties prove to be typical two and three year old, they come with all their own extra hang up and insecurities.  They will be scared away from your, will be in diapers longer, will stand strong when you want simple submission, no matter how long you will stand it out as "I am the mother" they will always get the last word.  That toy will always end up where they want it instead of you and they will make you a little crazy!  It is crazy WONDERFUL and nothing that you can't be overcame with love and time.  

Our Bella (beautiful) Xin (happy) KaLare (clarity) you have proven to be all these things added to our lives.  Daddy and I are so proud to have been chosen to be your parents and share our lives together no matter what comes we will face them together as a unit, a family.


Drea said...

What a lovely update!

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