Sunday, June 17, 2012

Christy's Courage - Living with EA/TEF

I am sharing a testimony from a Mother whose child has EA/TEF.  Meeting this family and our new friendship has reconfirmed for me that the journey I am on is my purpose.  Here is Abagayl's story:   

July 21, 2010 
This is the testimony of the last 4 years of God’s intervention with my daughter Abagayl’s birth defect/disabilities.  I pray that it will bless and encourage you as you serve our Lord.
My husband and I had always felt that if you worked hard, were committed and ethical in your performance; you would be successful.  This is the road we traveled for many years as I climbed the corporate ladder to achieve the position of a Finance & Commodity Purchasing Manger.  My husband, had worked in his family business of three generations as a cattle procurement and sales manager.  Basically, taking over the family business and learning more each day.  With this false security we earned in excess of $150,000 a year.  As we began to succeed, we sold our small home and farm and moved closer to my family into a much larger home.  This was justified by our growing number of children.  We attended church regularly, but did not live for God.
In February 2005 my husband came home with the first of many blows to come.  His father was getting a divorce and the family business would be shut down by spring.  The following week I discovered what the doctors thought was appendicitis was actually a new addition to our family.  I had been told that I was blessed to ever have children and not to expect such a thing in the future, so this was quite an untimely surprise.
For the 1st time in his life, my husband, had to draw unemployment.  It seems his profession was not easily transferred to another.  He tried various sales positions as I struggled with part-time and being bed-ridden during the last 4 months of pregnancy.  It was at that time that we decided to restart the family business from our home.  We were beginning to make progress.  
Our daughter was born premature, 8/25/06.  Abagayl was born 4lbs 15 oz.  This was a surprise, all ultrasounds had showed a normal 7 lb little girl even at 37 weeks gestation.  The pieces began to make since.  Abagayl (Abba) immediately began to turn blue and was taken away from us to nursery and then to NICU (neonatal intensive care unit).  It was determined she had a serious deformity.  She was born with Esophageal Atresia with Tracheal Esophageal Fistula (look up EA/TEF type C).  Basically, her esophagus at the top had stopped growing at 6 weeks gestation.  The lower portion attached to her stomach had grown up and attached itself to her trachea (windpipe).  She had many hurdles to overcome before surgery could be possible.  During this time, my company called me and said, “We need you back here this week or we’ll have to make other arrangements.”  I told them I could not leave her.  At that point, I was released and started paying Cobra insurance.  We waited the month and then surgery was apparently successful.  We gave her the first bottle there and it was such a miracle.  We were to stay one week in NICU for observation.  As the week progressed I noticed changes in the way she coughed when taking a bottle.  They assured me all was fine, and we took our precious little girl home.
From that day, the coughing increased and she began to stop breathing and turn blue with me.  I finally convinced the specialist to take a look.  Long story short the surgery failed and the esophagus had reattached itself to the windpipe causing the choking.  We were only home a few days.  From there we spent the next 2 ½ months with repeat failing surgeries.  This time in the pediatric intensive care (PICU).  We could not return to the nursery because she had been exposed to a non-sterile environment.  She was put beside children and teenagers with all sorts of infections.  The last surgery was experimental.  The specialist called on some colleagues and they suggested stitching and using tissue glue to hold everything together. 
During this whole time, I had been searching God’s word to strengthen and guide me.  I played Christian music and encouraged as many parents and children as I could in the PICU.  My husband and I took turns between the hospital and our then three year old son Austin.  Income was forgotten, but we continued to try.  Our pastor had been by our side faithfully.  As I searched, God led me to John 5: 6-9.  Paraphrasing:  “Do you wish to be made well?  Take up your mat and walk.”  I asked everyone of faith what God was trying to tell me, but they seemed they couldn’t hear.  Then, I heard the true meaning by the Holy Spirit.  It said, “She is healed, feed her”.  I praised God, and said, “Thank you Lord for your mercy.  As soon as the test comes back, yes, Lord, we will feed her.”  I waited for the world to confirm the promise I had been given.  I had never walked just in faith before and I doubted Him.  We went down for the test to see if there were any more leaks.  I waited so excited to give Abba a bottle again.  Her surgeon came in and said, “I’m sorry, the leak is still present.”  I completely fell apart, and the surgeon left to give me some time.  I cried out to God of His promise and my doubting spirit.  My body went limp and I knew I was lost.  At that moment the surgeon returned, probably on 5-10 minutes later.  He apologized and said, “I am so sorry.  We have been reading the test wrong.  The leak is repaired; I’ll go get her a bottle!”  Praise God!  The surgeon discussed with me that we really could have fed her earlier if we had just understood the way her esophagus had healed.  It just looked like a leak.  Again confirming that I could have fed her when God told me to!  Me, of little faith. 
We stayed about two more weeks to strengthen her from all the surgeries, and then we were home 10/28/06.  I have given this testimony to many.  There question was always, “What would you do next time?”  I always replied that I hoped my faith was stronger now, but secretly I pleaded with God not to test me again, not my daughter.
We had been denied Medicaid, financial assistance, etc.  All said that Abba’s condition would not last more than 1 year.  That was the criteria they felt we didn’t meet.  We slowly paid the bills and health insurance.  We prayed that they were right and that within a year all would be ok.
We had speech and physical therapists in the home as she was quarantined for two years.  She could not be exposed to anything with her weak state.  At 9 months old, stage 2 food or any infant cereal, she began to choke and turn blue again.  Many cases of aspiration pneumonia.  All tests showed an open esophagus and no leak.  I began to again seek the Lord for guidance.  He said, “Feed her.”  Oh no, not this again!  In faith, I began to pray before and after feeding Abba.  Before I would ask God what to feed her and after I would thank Him for allowing her to eat.  Only in faith did she eat.  Her specialist said I was killing her.  That if I continued, she would choke and there would be nothing to do.  I did not accept this.  Her pediatrician agreed, she was eating the special diet I had created, and was beginning to gain weight.  He encouraged me and I began to seek wisdom and another specialist.
The diet God led me to was simple but very time consuming.  I cooked everything from potato and onion to minestrone soup.  When it was cooked, I then pureed the contents, put them in muffin pans to freeze, popped them out and put them in a container.  At meal time, I micro waved the frozen circle added a little broth and SHE COULD EAT!  With prayer she could also eat some deli meat, non-gluten crackers, etc.  There were no rules.   Only guidance from above as to what not to give her.
One day while listening to 106.9 The Light (Christian music), I heard about Cincinnati, Ohio’s Children Hospital.  The program was about a girl from Africa that had a life-threatening illness and the hospital was covering all costs to get the girl to them.  End of story the girl was healed.  I began to pursue information about this hospital.  Guess what I found?  The #1 specialist for children born with EA/TEF and a special feeding team with members from all disciplines of medicine.  Dr. Kocmond, Abagayl’s pediatrician, immediately began the paperwork of necessity.  Ohio began the red tape of getting approval from Blue Cross/Blue Shield.  I persisted all the way to court for Abagayl’s Medicaid and at 1 ½ she was approved!  I felt a real change was coming!  This was approximately February 2008.  Months crawled by as the feeding team called.  They were working on everything, but no luck yet.  I cried out once more to God, You are with us, Is there no one to do your will?”  You guessed it, I got the phone call and we were set for full tests, top to bottom, for July 2008.  I had to be patient.  I continued home therapy with what I could read.  We continued the feeding process and were making some progress as more teeth came in.
As we drove to Ohio I was gripped with fear.  The original surgeon had told me that if any other doctor touched her, the esophagus could fall apart.  He said her condition was very rare and no one would understand.  We were going to be staying a week for full observation.  My pastor even came up with us.  The night before we were to go into the hospital I prayed through the night.  I claimed every promise that could be found and I promised that I would not forget and I would witness of His glory and mercy.  Sometimes, I think God has a sense of humor.  For at the time I said I would witness of Him, I also said Lord be patient with me, You know me and I am timid in front of people, teach me how.  It was 5:00 am now and I felt I needed to “walk on” with the day ahead.  Again, God had a different plan.  I could feel and hear him telling me to go to the front desk and witness of Abagayl’s original healing and feeding story.  I of course told God it was 5:00 (like he doesn’t know time).  I said no one will be there, ok, fine, I’ll go.  I headed toward the desk and saw the shade pulled down and locked.  I was very relieved and began to walk on by.  God tugged again and I stopped.  From behind the shade I could hear a woman’s voice singing to God’s glory.  I knew I was in for it then.  I humbly went to the locked, side door.  I began to knock, hoping she wouldn’t answer.  No I didn’t get off that easy.  A lady about 55 slowly opened the door.  I begged her to be patient with me.  I told her I was here with my 1 ½ year old to go to a specialist at the hospital.  I told her what God had asked and I began my testimony.  Her face warmed and then began to smile and even to be “lifted” a little.  When I had stumbled through my first testimony, she hugged me and began to speak.  She was born with one leg shorter than the other.  It had troubled and pained her so.  When she was able to work, walking made blisters on the one foot.  She said she had been down my road.  The lady explained how at one prayer service God had healed her, but she wouldn’t tell anyone.  She was afraid the healing wasn’t real or that they would think she was crazy.  She stood there squarely, looking down at her feet and said, “Have faith, He is with you.”  What I thought was a test for me was really God’s way of sending me to one who could show me through their own words that a testimony is nothing more than being honest and open with people about what God has done in your life.  What a blessing to learn you do not have to be a scholar to encourage others and to have great faith.  Amen!
We set off for the hospital and the first swallowing test came back fine.  No restrictions they said.  We were very discouraged.  She even ate a cookie for them without choking (her 1st one ever!)  The next day was meeting all the specialist and preparing for exploratory Flexible Bronchoscopy, Upper Endoscopy and possible dilatation.  We were trying to rule out a Diverticulum or goiter.
The day of, I was able to put Abba to sleep myself and lay her onto the operating table.  This was so comforting to me.  I knew she wasn’t scared without me now that she was asleep.  Then we waited.  About 45 minutes later, I met Dr. Kaul (the #1 specialist I discussed earlier).  He began to draw and explain as other specialists entered the room also.  Abba’s esophagus had shrunk down to 6mm from all the scar tissue at the site.  It needed to be 16mm.  All the doctors listened as I explained how I fed her.  They could not imagine how she could eat and that she had NEVER been on a feeding tube!   Next the pulmonary doctor spoke up,  he explained that she had Tracheomalcia & Innominate artery compression (or in my terms a D shaped instead of O shaped trachea and a restricting membrane at one point that closes her trachea completely).  This doctor began to question me about her breathing and could not believe she had never had a “trach” (my terms a hole cut in her throat to breathe).  They said they had to see this, so they set up a feeding study.  I brought in the items I pureed to feed her along with some deli meat, etc. and the doctors just looked.  They could not believe that this was possible!  I know how, and I’m telling you know.
They informed me that I would have to fly back and forth every other week to have follow-up stretchings of her esophagus until it held, usually 6 months to 2 yrs.  I was told she has extreme GERD (her flap doesn’t close to her stomach).  This was why she was throwing up and choking so much.  Also, we discussed trying to remove the membrane from her trachea to give her room to breathe.  In all they praised her pediatrician, my husband, and I for what we had created for our daughter to survive until then, they just couldn’t believe it!  Dr. Kaul added one thing….He leaned over and kissed Abagayl and said, “Here’s to your quarantine!”  From that moment on he said we’ve got it now, she’s off quarantine!  I cannot tell you how my mind rushed at all of this and how God had held and delivered us!  I knew traveling every other week would be hard, especially leaving my young son.  We committed and the process began.
The weekly dilatations were from 7/7/08-5/27/09.  Abba and I would fly out one morning and back the next afternoon.  Slowly she was stretched and her esophagus DID NOT TEAR but began to open a little more each time.  She would eat anything right after a stretch.  It was amazing to watch as tears would roll down my face.  Can you imagine….a Mother that was told her daughter would never eat past a liquid diet, and now I’m watching her eat steamed vegetables and fish!
Each time we went there was always something of God’s presence.  Maybe it was me in a baseball cap, exhausted and Abba with purple eyes that drew people to us, but I like to think that as I spoke, “Through Christ all things are possible”, He sent his servants.  Out of nowhere would come someone to carry a bag, give a testimony, some taxi drivers witnessed and others had us pray for them.  I can’t explain how God worked through those months, but He was ever present.  To help or to use us.  Each person that saw her would just say, “What is it about your daughter?  I can’t explain …”they said.  I knew it was always God’s leading for an open door.  As I would began to speak they would humble themselves from there busy schedule, down to Abba’s car seat and just touch her.  Many business travelers would gather at the gate with us, me sitting by Abba in the floor, and they would just listen to my witness.  I never asked; they just came from nowhere.  One day a young man from baggage helped me from a taxi at the airport.  Again, the question, “What is it about your daughter?”  As soon as I heard those words, I knew.  This particular man, helped carry our bags.  We thanked and prayed with him and said good-bye.  When we got to our gate, he came again and sat.  He began to tell all that would listen about her story.  This was the largest crowd.  He was a faithful Christian and I was humbled by him as he spoke.  Such love I have seen, but also such hatred as some tripped and bumped over us as we travelled.  For some I could only say a silent prayer.  If only to keep myself together.  When you are walking through a trial it is amazing to what your eyes can be opened to.  My blinders were taken off and can never be put back.  I see the person in a wheel chair being asked to stand so they can check them in security, and YES I am there.  Just as those who were sent to be there for me.
Each trip, we flew on such a tight schedule.  We had to get back so my husband could try to work the next day.  He always watched our young son & I took Abagayl.  One surgery Abagayl came out to recovery.  They always called me back early to help recover her breathing.  She had little quirks that helped her.  I went back and her monitor showed her “stats” the lowest I’d ever seen.  We’d done this so many times.  We hadn’t changed anything.  What was wrong?  She couldn’t really wake, her breathing was shallow, something was different….  Four hours later, several attempts of oxygen, etc., they decided we had to be admitted to see what was wrong.  I stepped out of recovery to call my husband, “Honey, we’re not gonna make it home.  Something’s not right.  I’ll call ya later.”  Tears ran down my face and again I breathed in and out with “All things are possible through Christ.”  Right then it hit me.  We’re here for a reason, “Lord, show me.”  I went back into recovery filled with strength.  I told the nurse Abba just needs a little help.  I laid my hands on her and said, What I have I give you….my Faith.  Now Abba, let’s wait on God.”  I set down in the rocker and the nurse just kind of looked at me.  You guessed it  Abba set straight up in the bed, reached her hand as far as she could across the recovery room toward a baby.  Abba said with a strong breath, “Baby Wake up, baby cry!” This baby had been in recovery the whole time we had and was not going well.  His parents had not been allowed to come back yet and they were working constantly on him.  This baby had not cried at all.  The baby instantly cried out loudly and Abba lay back onto her bed.  What?  How did Abba know the baby was there?  The nurse said, “Did she just?????And that baby just????”  I simply sat in my rocker with my hand on Abba and said, “Yes, she does that sometimes.”  The baby’s parents were immediately brought back and Abba’s “stats” went without hesitation to normal.  The young baby and Abba walked out together!  Recovery didn’t try to explain it; they just witnessed and were speechless.  Seem a little far fetched for you?  I’m sorry, but as I promised, I will witness of you Lord.  I would not dare add nor take away from what He has done.  It is up to you to discern.  We did catch our flight and made it home that evening.  Wow, what if I’d missed or been too defeated to wait upon the Lord?
May of 2008, Abagayl’s esophagus held at 16mm.   I looked a Dr. Kaul and said You have given her life!  He corrected me by saying, “I am only a vessel, Life comes from above.”  Again, I was humbled and those words echo each day.  We still await the Aortopexy surgery.  The CT Angiogram shows there is not enough room to remove the vascular ring around her trachea yet.  We are waiting.  Some children’s trachea grows even with the restriction.
I am no one; neither am I worthy to raise such a miracle child.  I pray that you are blessed by her testimony.  It did not stop on May 2008.  Since our travels, I guess many churches know of Abba.  They pray often.  Mothers across the country email me.  Many of their children are about 9 months old and are having feeding trouble that no one can help them or understand.  The diet and therapy I was led to use for Abagayl is being passed on to many.  I get to hear the triumph as the mother’s use the recipes and tools that I did to help their children.  Many are exhausted as I was and feel alone.  What a God-given ministry.  This same diet can be used with feeding tubes or to prevent feeding tubes.  Elderly have been assisted when they’ve been weak, can’t swallow, or have problems such as goiters.  I would have never imagined how fulfilling it is to see progress and victory, or to simply know that I’m there for those the system has lost.  
Abagayl turned 3 this year in August.  She had her 1st birthday cake!  After all the hard work to get her able to eat it, she doesn’t even like cake!   Life is funny!  She prefers cookies!
It is now February of 2010, Abba has began choking excessively again.  I do not understand.  I notified Cincinnati Children’s Hosp. and they are working fast to get us and appointment.  I feel far from God as he presses on me that a 3-6 month term is coming up again.  I do not have the strength to start over with the dilatations or Lord no, not another complication.  I can only praise God for His past faithfulness and even though I don’t “feel” Him, I must rely on His mercy.  I read my bible and the words just go void, nothing returning, no presence.  I am very confused but I go forward.  All is scheduled for April 7.  The wait without God’s presence is unbearable.  I know there is a lesson here so I wait. 
In Ohio, we begin.  When surgery is over, I honestly held my breath.  Dr. Kaul came out first.  He said her esophagus had held mostly and he went ahead and was able to clip a little more scar tissue.  There is one big piece left and though he wants to remove it, he’s cautious.  Next Dr. Boesch tells me that her tracheomalacia is unchanged (I was hoping her trachea had been able to widen even with the artery compression).  Ok……this seemed like excellent news and Praise God, it is.  Thank you Lord.  Even though, through works or seeking your presence, I could not gain access to you.  I could not earn your favor.  Lesson learned:  God loves me unconditionally.  I don’t think I could have ever accepted this had it not been for Him tying my hands and thoughts.  I could do nothing to persuade Him for a healing-He gave it freely and holds it still.
I began to question why Abba could be choking and what was all the loss of breath.  What could be going on?  Dr. Kaul immediately…. (here it came)….wanted the feeding team to assess Abba and begin her on a 3-6 month intense therapy every week.  They would be teaching her to chew properly now that she had molars to grind, writing a medical plan for school (Her condition changes daily and you must know the full spectrum of prevention and emergent reliefs.  These go against all natural ways of relieving a choking victim.), working with her respiratory problems by teaching her techniques to prevent her trachea from collapsing when playing.
I was and I am fully on board.  I hesitate now at the 3-6 month stay.  What will I do with my son who will start 2nd grade?  Will he start school in Ohio?  I begin to pray for another door.  This is where I am today, patiently waiting for God to send help or knowledge of the next step.  Our finances and marriage cannot endure much more.  I give it all to Him.  I know victory is ahead, whatever it looks like.  I am willing.  It is now June and I have no idea what to do.  His presence has returned in full force; I am at peace as He works.  Lord I ask, “Work fast, I need you!”
I am taken to Mark 5:22-43 My version: Jarius's daughter is very sick. He seeks out Jesus and pleaded with Him. "My little girl is dying" "Come and put your hands on her so that she will be healed and live." No longer had he asked this of Jesus that a large crowd pressed in on Jesus. The woman bleeding of 12 years boldly fights her way to Jesus and touches the hem of his garment and was healed instantly. Jesus is distracted from Jarius and turns to the woman. I can just see Jarius tapping his foot in urgency....My daughter, my daughter. The disciples argue how can you tell someone touched you in this crowd? (delaying Jesus more). The woman fell at Jesus feet. (delay delay). After Jesus has addressed this woman He returns to Jarius but by now Jarius has received the news, his daughter is dead. Jesus said, “Do not be afraid; only BELIEVE.”  Jarius does not lose faith, nor does he grumble at the waiting. Lord, give me the patience of Jarius. In faith he knew Jesus would come, and a delay was just an opportunity to witness God's glory. Sometimes when we are waiting on a miracle, a greater work is being done by Christ. Maybe it is in us before the full victory will be realized. Or in someone else that we may be strengthened in our Faith. Let me not "tap my foot" at the delay, but embrace each day as I await His touch.
I now ask you to seek your heart.  Look for truth.  I do not know if you are the vessel God has chosen to help us or if He has other plans for meeting our financial needs.  I look to your discernment.  Abagayl has a part-time care aid from Medicaid.  They will not let me work.  I have to be here for all medications.  This is how I have found my ministry.  I know God is faithful to meet all our needs.  We have had our home for sale since 2008.  The economy has not sent a buyer yet. My Husband's work has slowed.  We pulled all our equity out when Abba was born to cover medical expenses. 
We currently receive WIC from SC for Abagayl’s pediasure.  This is due to her nutritional needs and disability.  We have received no other monetary relief from family or any other source.
I do feel called to the missionary field.  I have been humbled and learned to walk. God continues to press upon me, “I have shown you the light, I am the same yesterday as today; Do not hide this light under a basket.  As I search His word, I find Matthew 5: 14-16 …”Nor do they light a lamp and put it under a basket…”  Many times I am reminded of John 9: that ask ..”Who sinned, this man or his parents that he was born blind”  I have searched myself over and over and only can answer the same Neither, but that God would be glorified”  I give all the glory to God for the last four years.  I would not change any hardship for I would not be what He is seeking to create.
There is so much more I would like to witness of.  Many small moments that were woven into our faith; the testimonies of the servants God sent; the feeding stories of children using this special technique and diet.  God has put on my heart an end result of writing a book.  He’s even led me to have faith and it will be written.  The name:  I cried Abba.  For I cried unto my Father in Heaven (Abba), and he heard my prayers and has carried me.
We humbly accept your prayers for God’s provision for His way is the perfect will.

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