Thursday, December 25, 2008

Christmas Letter 2008, What I Have Learned This Year

'God reveals Himself to His people'
…God has revealed it to us by his Spirit. The Spirit searches all things, even the deep things of God.
1 Corinthians 2:10

“For God so loved the world that He gave His only begotten Son, that whosoever believes in Him will not perish, but shall have eternal life.” John 3:16. Probably the most well known verse in the bible. I don’t know about most of you, but I believed this verse. I mean I believed God loved me…didn’t I? I guess you could say I just didn’t get it. This past year brings to mind so many memories and emotions. What a journey it has been. And still is. Kenny and I welcomed a baby girl, named Ava Irene Ballenger, on New Year’s Eve of last year. Hard to believe it has been almost a year. The events that unfolded that night were like a scene out of ‘Trauma-Life in the ER.’ This letter is a journey through great tragedy and even greater triumph.

To begin the journey, I must share a dream I had in early November, 2007. Just to set the scene for you… I was 8 months pregnant with Ava, had a great career, beautiful family…life was good. I go to bed that night [uncomfortable as usual] and, after talking with Kenny about his day and saying our prayers, I fell asleep. Let me just take a quick moment to comment…most everyone has a picture in their mind of what they believe Jesus Christ may look like right? I mean there are several books and movies, but I’m sure you, the person reading this letter, has an idea in your mind of what Jesus looks like. That being said, in the middle of the night I had a dream that Jesus was standing in front of me. Now this was not your typical dream. You know, usually dreams just have a lot going on and most of it doesn’t make sense. Like you’re dreaming that you and the waiter at Applebee’s are chasing purple monkeys through the Syrian desert. I mean, dreams are usually like that. This dream was different. It was just myself and Him. Nothing else was going on. I remember in this dream I felt an overwhelming sense of love, kindness and gentleness just emanating from Him. He didn’t say anything, just stood there in all of His awesome glory. In the dream I dropped to my knees and, as I did, He took my hand. As He took my hand I wept, and He said to me, “I am always with you.” And that was it. I woke up. Whoa! I thought. WHAT was THAT all about!? Why would Jesus come to ME in a dream? And I felt like He was comforting me in some way. But THAT didn’t make sense because life was great, why would our Lord and Savior come to comfort me in a dream? I just laid in bed for a long time taking in what I had just experienced. I only told a few people about the dream, my husband [of course], my great-Aunt and our associate Pastor’s wife. I didn’t tell anyone else, I mean what would people think if I said, “By the way, Jesus visited me last night. Yeah, seriously, in a dream.” Kenny didn’t know what to make of it. The following week I received a phone call from my, normally calm, husband trying to hold back tears as he informs me that he had been fired that morning. “Fired?! Seriously? The day before Thanksgiving?” I was mad let me tell you, and scared. I was getting ready to have a baby. My husband’s income was supposed to support us while I was on maternity leave. As it turned out, Kenny was able to transfer to a different dealership and stay with the company. “Phew!” I thought. Now everything would be ok….

God is still in the business of Miracles…
Jesus said, “Believe me when I say that I am in the Father and the Father is in me; or at least believe on the evidence of the miracles themselves.
John 14:11

…I had been in labor all day and arrived at St. Ann’s Hospital ER Department deep into advanced labor and with fetal heart tones dropping quickly…at times barely audible. They put a fetal heart monitor around my belly (you know, the ones that look like a belt?) and saw the expression on the nurse’s face as she kept moving the belt around trying to find a heartbeat. There was none. I had decided to pursue a natural birth, and so had no pain relief at all. For the past 2 hours I had been trying in vain to push the baby out but she would not budge. I kept begging them to take me into surgery and do a C-Section, begging them to get the baby out. I was in pain, yes, but I was begging them because I heard her heartbeat getting slower and slower. Now in the trauma room we couldn’t hear anything at all. Could you imagine? It would be like one of your kids falling into a lake and drowning and you can do NOTHING but stand on the shore and watch. I couldn’t do anything. She was literally stuck inside me, dying (or already dead), and I could not get her out. Worse yet, I had heard her heart slowing down, I had heard her die. We would later find out that a placental abruption had been the source of this tragedy.

I was lying on a trauma room bed and in walks this Dr. I see him getting forceps ready. I’ll never forget the words he spoke as he leaned over and talked to me. “Honey, there is no time for a C-Section, and all the surgery units are in use. You are going to have to sum up whatever strength you have and push as hard as you can while I pull ok?” A few moments later I was slammed with another contraction. And…I just went to another place. I prayed, I cried, I screamed. While I pushed, and the Dr pulled steadily with the forceps, a [very large] male nurse shoved his elbows into my abdomen…and Ava was born. I didn’t see her as the Doc cut her cord and immediately handed her off to the team from the NICU. Ava was, for all intents and purposes, dead at birth. We estimate that she had been without a heartbeat for between 5 and 15 minutes. The NICU team commenced to performing full CPR on Ava, trying feverishly to revive her. “1 min!” I heard them say. “2 min!” time creeped by….”3 min!” She was dead. I couldn’t fathom the thought. I just laid in the bed in shock. “How would I tell the family that we lost our baby girl? How would we deal with the loss?” I grabbed Kenny by the shirt collar, “GO PRAY FOR HER!!!!!!” I screamed. Poor guy was still clenching the hospital bed rails. He made his way over to the table where they were performing CPR on our baby. I saw Kenny bow his head and I closed my eyes along with him. “5 min!” I heard them say…It seemed like time was just creeping by. ”We got a heartbeat! She’s back!” She was alive! My midwife and I just grabbed each other and cried tears of joy. She was alive. It was a miracle! Our prayer had been answered immediately. God had given Ava back to us…

“4Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6Love does not delight in evil but rejoices with the truth. 7It always protects, always trusts, always hopes, always perseveres.
I Corinthians 13:4-7

…After Ava was revived, the NICU team quickly rolled her over to my bedside so that I could see her. I was only able to get a quick peak at her as her condition was dire. They said they had to get her ‘settled in’ as quickly as possible. It took them a couple more hours to get me into a room and STILL no one came to give me an update. I kept asking staff members, “How’s my baby? How’s Ava? Can we see her yet?” “Not yet, it shouldn’t be long,” I kept getting told. Ava was born at 9:15pm on New Year’s Eve, and I didn’t get into a room until about 4:00am. STILL no one had come to give me an update on her. Finally, at around 9:00am, the Neurologist on staff came in to talk to us. “Do you understand what has happened to your baby?” He asked. “No,” I replied with a puzzled look. I mean they revived her and she was breathing I didn’t understand what was going on. “She has suffered a severe insult to her brain resulting from going without oxygen during her birth. Her brain is swollen and she is in a coma.” He continues, “she is not producing urine.” “What?” I still didn’t understand. “What this means is that all of her organ systems have shut down in order to preserve her brain.” The Dr continued. “She is fighting…but the outcome doesn’t look good. We’re going to transport her to Children’s Hospital to give her the best possible chance of survival. You can go back and see her now if you’d like.”

After he left I looked at Kenny and the two of us just sat there. I don’t think we even blinked. We made our way down the hall to the NICU, stopping at the sink to wash our hands, and waited for our nurse to come and take us back to Ava. When we arrived at her bedside, they had her laying on her side, she was so beautiful…perfect. She had a head full of dark red curly hair, and little red puckery lips. She looked perfect. It was so hard to imagine that she was so sick. The nurse caring for her explained that we could touch her but not to make any stroking motions because it would cause her irritation. She was not breathing on her own and had been having seizures since shortly after birth. I felt a lump in my throat. I was trying to hold back tears (in vain of course). I was overcome with love for her, and I wanted to take her place on that table. It wasn’t fair that this tiny little baby was suffering.

After arriving back at our room, we had several people come to the hospital and pray with us. The love was starting to pour in from all over. Several staff members had heard of the tragedy and came to give their condolences and offer prayer. The sweet Dr who just ‘happened’ to be at the hospital that night came by to check on me, to check on me and to tell me how sorry he was he couldn’t do more for Ava. He also offered to keep us in prayer. People from Germain, the company I worked for, were calling to say they had heard and were praying. I had voice mails from pastors of other churches, family members, we had voice mails from complete strangers. ALL reassured us that they were lifting up Ava in prayer. At one point Kenny and I counted several dozen churches in several countries around the world praying for our baby. We felt so wrapped up in love it was amazing! Despite the tragedy that was unfolding in our lives, God had wrapped His arms around us in love. Through the love of many people, he was reassuring us of His presence and His love. I was still trying to wrap my head around the reality of our situation, but I felt God’s love around me. It was like warmth enveloping my entire body. Ever had anyone offer to pray for a bad situation in your life? I mean sincerely, with heartfelt love, offer to pray for you? Kenny and I had people call us and offer prayer that I never knew even prayed….but they prayed for Ava. For a lot of the people that called us, it was the first time in a long time [if ever] that they had ever turned to God in prayer for anything. But they prayed for our baby, and us. So in the midst of this tragedy going on, I was able to sit back and literally watch God’s love all around us. In action. Very cool…

God gives us the strength to endure…
“…Do not grieve, for the joy of the LORD is your strength."
Nehemiah 8:10

…In the first week or so after Ava was born, we were so overwhelmed with love it could only be God at work. We also started having an unusual amount of ‘favor.’ Things just started falling into place for us. Aside from the many offers for prayer, we had people walk up to us in church and hand us money, people brought us food, staff members at Children’s Hospital would go out of their way to come and talk to me and pray with me… I remember the day I came to understand that Joy that everyone talks about. It had been a hard day for me. Ava was about one week old, and we still had a long stay ahead of us. That morning, I had been approached by this nurse in the NICU that just had a bad attitude. She started telling me about all the bad stuff that Ava would probably have to endure in the weeks and months to come. When she walked away I grabbed the curtain, yanked it closed and pulled up a rocking chair beside Ava’s crib. As I took her out and settled into the rocking chair with her, I looked down on her beautiful little angelic face [still in a coma], and the tears started to flow. They were actually dropping onto her face. My mind was filled with anguish. I started asking God, “Why God? Why her? Are you really here? Are you really in control of this situation like everyone keeps telling me you are? Really not feelin it God. God?” At that moment I felt my pocket vibrating. “Who’s calling me?” I thought. As I looked at my phone I saw I had a new text message. I pressed the ‘Read Now’ button and as I read the text message the hair on my arm stood on end. The text message read, “Vicki, I felt the Lord wanted me to give you this verse to read. ‘Be Still and Know that I am God and I am With you.” Had God actually answered my question? It was as if He were listening and spoke right to me through Vonnie. I felt warm all over again, my cheeks were actually warm to the touch. I felt this Joy welling up inside me. My bad thoughts had turned to pleasant thoughts. I was no longer worried about Ava. I KNEW God had this situation under control. My joy was real, and it filled me up. I told Kenny about it and I don’t know if he didn’t believe me, or it was just hard for him to fathom, but that night it happened again. We were lying in bed, and Kenny was having a hard day. Questioning whether he was praying in the right way, questioning whether we could have done something differently, and on and on. As we were lying there, he turned to me and said, “I just feel like I should be doing something differently.” As he said that, HIS cell phone beeped with a new text message. It was from Vonnie again. It read, “Kenny, I feel like God wants me to tell you to be still and wait.” “….Are you kidding me?” I thought. We both just laid there staring blankly at his phone like, “Did that really just happen?” Now Kenny believed me. Man did he ever! We both were humbled at how God was moving in our lives. It made our hearts ache to see Ava in the hospital, but God was very clearly telling us, “I have this under control! Just have faith in me…” I was filled with joy knowing that God loved us, and revealed Himself to us in such a spectacular way…

…to give it all to God...
“…I was shown mercy so that in me, the worst of sinners, Christ Jesus might display his unlimited patience as an example for those who would believe on him and receive eternal life.”
I Timothy 1:16

I like that verse, “Unlimited patience.” The Lord’s patience is unlimited. I wish mine was. Those of you who know me, know a person who is goal oriented, lives life by her planner and likes things in order. I’m pretty much a professional control freak. But I couldn’t control this situation. In fact, I felt completely out of control. The next few weeks after Ava’s birth I would learn that I would have to give up my career, learn extensive medical procedures and learn to depend on other people. Very hard for a professional control freak to do let me tell you. I remember like it was yesterday, our first care conference with all of Ava’s Doctors. Let me just set the scene for you. Down the hall from the NICU, there is a board room, literally a board room. It is a long table that seats probably 30 people. So we are ushered into this conference room and seated on one side of this massive table, and then here come the Dr’s. The Neonatologist, Neurologist, Developmental Specialist, Cardiologist, Pulmonologist, Nurse Practitioner, Hospital Social Worker, NICU Discharge Planner….I looked out the door to see if they were going to call in the cafeteria workers and cleaning crew as well. I mean, might as well have a staff party right? I just sat there silently praying that I wouldn’t have an anxiety attack from all the stress. We were informed of the grave condition she was in, and advised that she would require extensive specialized care even after coming home. After the meeting, I sat there with Kenny and the hospital social worker and just broke down crying. I was just so scared. I didn’t know how I would handle a child with such in depth special needs. Could I do this? I had always been able to stay strong through everything that life had thrown at me, but this? I wanted my mom so bad at that moment. Isn’t it funny no matter how old you are, when life sucks, the person we want the most is our mom.

“Let’s go have dinner somewhere quiet,” I told Kenny. I will always remember that dinner. We drove out to this remote truck stop by Buckeye Lake, and just sat there and talked about how our lives were changing. It was as if we were standing at the edge of a cliff getting ready to dive off into a new life…and I was scared to death. I couldn’t take much more, I really felt at times like running away. Not literally, but you know what I mean. You just want to crawl in a hole and disappear. Many times I prayed for God to take this away. I prayed for Ava to be completely healed overnight. But it didn’t happen that way. She was making slow, steady progress, but she was getting better. I went to bed many nights thinking that maybe I would finally wake up from this bad dream and find a healthy baby girl sleeping in her crib the next morning. I remember one day when it got really bad. I literally could not stop crying. I cried from the time I woke up until I went to bed. Hysterically. Kenny was really worried about me. The next morning I woke up and my eyes stung so bad I could barely open them. I went back to bed and, you guessed it, started crying again. Then I just stopped. I laid there in bed and said, “God, I can’t handle this anymore ok? I’m going to put this one up on the shelf because no matter what I do I can’t change it. I trust that you are in control and will bring some kind of good out of this. I know that you gave Ava back to us that night in the ER, and that you must have something pretty special planned for her life. I know that she was yours before she was mine and so I’m trusting you with her. Ok God?” I decided to change the way I prayed. Instead of asking God to remove our burden, I asked Him to show me what to do with it. There is growth in everything. Amazingly, after I said this I experienced a deep, inner peace. Peace that surpasses all understanding…
God has infinite grace…
“For it is by grace you have been saved, through faith—and this not from yourselves, lest no one boast, it is the gift of God.”
Ephesians 2:8

Grace, by definition, is free and unmerited favor of God. Unmerited. Interesting. So basically grace is a free gift from God that we do nothing to deserve. Remember how I mentioned that Kenny was fired the day before Thanksgiving? He was able to, Praise God, transfer to another dealership within the company. But after Ava’s birth, neither one of us were in any condition to work. One of my first thoughts was, “How are we going to survive financially?” Like a lot of people, we had a mortgage, car payment, several credit cards, utilities, and others. It was amazing the outpouring of help. We received favor from our employer, I received cards in the mail with money, members of our church shoved money into our hands…I do not think I paid for a single lunch or tank of gas the entire time Ava was in Children’s Hospital. I would get so overwhelmed by the outpouring of help I often times wondered, “Why? What have we done to deserve all of this kindness?” A friend of mine told me one day while sitting by Ava’s bedside, “Honey, that is what grace is. God loves you, and He is showing you He loves you. You do not need to do anything to deserve it.” With my eyes now open, I could see God’s grace and favor everywhere in our lives. Seriously. Everywhere. From how the staff at Children’s seemed like they were extra watchful of Ava and our needs. How our private insurance company agreed to pay for private duty nursing (which is unheard of). How Ava was able to get on the Medicaid Waiver program in only one month, seriously unheard of. How we prayed for a Christian nurse, and we found a wonderful nurse…who had been praying to get placed with a Christian family. Isn’t God so cool?! How, despite Ava’s challenges, our lives have been so richly blessed…

God’s refining fire…
22But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, 23gentleness and self-control. Against such things there is no law. 24Those who belong to Christ Jesus have crucified the sinful nature with its passions and desires. 25Since we live by the Spirit, let us keep in step with the Spirit.
Galatians 5:22-25 NIV

This is one of my favorite scriptures from the bible. It is talking about how God creates good fruit in your life when you allow Him to lead you. I actually keep this scripture in my planner because it describes the kind of person I strive to become. Can you imagine what kind of impact you would have on the people around you if you were constantly walking in; love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control? I know that God brings good out of every bad thing that happens to us, and turns it around to bring honor and glory to Him. I am now starting to see how, going through this, has refined me. Ava spent 12 weeks in the NICU and, throughout this past year, has spent a combined total of 6 months at Children’s Hospital. I have taken the trip down I-71 South more than 200 times this year. I remember my first day back to work after being off for months, I actually drove to Children’s Hospital and pulled into the parking garage before I realized that I had intended to go to work that day...

Our journey has made me a better, more patient wife and mother. It has made me humble and appreciative of every little blessing in my life. It has allowed me to let go of the love affair I had with my career. It has opened my eyes to see the bigger picture. I am just now starting to learn about all the miraculous ways God moves in our lives, and I am sure that I have just tapped the surface. But after what I have experienced in my walk with Him this year, I am excited to see where He will lead our family.

I came across a copy of last years Christmas Letter and was reading Mom’s journal entries. She was so passionate about the Lord. She absolutely infected you with her love of Jesus Christ. In her last journal entry, she wrote that her greatest wish was that her friends and family would come to know Jesus Christ as their personal Lord and Savior. That is such a cool and selfless wish isn’t it? And you know, I cannot imagine going through what we went through this year without Jesus in our lives. He held us up, He comforted us, and gave us peace that surpasses all understanding. Just like He said in my dream, “I am always with you.”

Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me."
John 14:6

I pray that this Christmas Season will bring a new [or renewed] relationship with our Lord and Savior Jesus Christ. I pray that blessings will rain down upon you and your loved ones. I pray for the Lord’s favor will be on you in the coming year. I pray for peace that surpasses all understanding. I pray for you to experience vibrant health. I pray for all of you, each and every one. If you have never made a decision for Jesus, and would like to now, simply make the decision in your heart and read the prayer below and begin your relationship with the Savior today!

Merry Christmas and God Bless,

The Ballengers
Kenny, Vicki, Aohdan & Ava
202 County Rd 24
Ashley, Ohio 43003
(614) 402-5728

Prayer of Salvation
Dear God in heaven, I come to you in the name of Jesus. I acknowledge to You that I am a sinner, and I am sorry for my sins and the life that I have lived; I need your forgiveness.I believe that your only begotten Son Jesus Christ shed His precious blood on the cross at Calvary and died for my sins, and I am now willing to turn from my sin.You said in Your Holy Word, Romans 10:9 that if we confess the Lord our God and believe in our hearts that God raised Jesus from the dead, we shall be saved.Right now I confess Jesus as the Lord of my soul. With my heart, I believe that God raised Jesus from the dead. This very moment I accept Jesus Christ as my own personal Savior and according to His Word, right now I am saved.Thank you Jesus for your unlimited grace which has saved me from my sins. I thank you Jesus that your grace never leads to license, but rather it always leads to repentance. Therefore Lord Jesus transform my life so that I may bring glory and honor to you alone and not to myself.Thank you Jesus for dying for me and giving me eternal life. Amen.

Tuesday, July 8, 2008

The Anat Baniel Method

Enter The Anat Baniel Method...
I have been praying for God to reveal a path to healing for our little Ava. I found this website on the internet and found this one particular testimony very interesting. You can read more about Anat Baniel at

Elizabeth Diagnosis: Cerebellar Hypoplasia
Elizabeth's mother speaking to a group of therapists:
Many of you may know of my daughter Elizabeth… Some of you have met her personally and others of you have watched Dr. Feldenkrais and Anat working with her those early years through the practitioner training tapes. The reason that I want to speak to you today is that it is impossible to fully imagine the miracle of who Elizabeth has become unless you know how far she has come from where she started out in life. When she was born, Liz had no movement in her body. When I say “no movement,” I mean that her condition was so severe that she could not even move her eyeballs, and for a time we believed that she was blind.
My husband and I were determined to leave no stone unturned to help her. We started with the “low incidence” early intervention services provided by our local school system who offered physical and occupational therapies…all were painful and unproductive experiences for her. Adding insult to injury, therapist after therapist told us "There is nobody home inside this child." When she was four months old, the chief of pediatric neurology at the University of Chicago told us that she was globally brain damaged, that there had been no brain development since birth, and that he saw no reason to believe that there would ever be brain development in this child. He felt that the best we could hope for would be profound retardation. He suggested that she probably would need to be institutionalized and that we should “prepare” ourselves because he did not expect that she would ever be able to sit up on her own, to walk, to be continent, or to feed herself.

You understand that the brain cannot develop if the body does not move, and vice versa. This child’s body was rigid, at the same time as it was floppy and hypotonic; she was virtually imprisoned within the confines of her damaged brain. It is my belief that had we not found the Feldenkrais (later: the Anat Baniel Method) Method when we did, had we done nothing to bypass the damage that had occurred in utero, had we made no effort to re-route and create new and healthy neural pathways, she would in fact have become more and more disabled and would have fallen more and more behind intellectually, true to the doctor’s most dire predictions.

I am happy to report that today, this same little girl has become a beautiful young woman who is not only walking, but at age 25 is in graduate school getting a second master’s degree in social work, after having received her first master’s degree in Judaic studies from Brandeis University… a thousand miles away from her family. She has become, in other words, a totally independent and happily well-functioning, highly educated human being with one of the strongest and most positive senses of self esteem of anyone I know. You know there is an expression in Yiddish which says that “God slaps you on one cheek and kisses you on the other.” My husband Lou and I have been profoundly kissed.
I must tell you that regarding the Feldenkrais work, we were very fortunate to find Moshe Feldenkrais himself… and when Elizabeth was so young. By 13 months of age, Liz remained virtually paralyzed; the only movement she could muster was to roll over on one side. Within her first five 20 minute sessions with Moshe, however, she had begun to make the reptilian movements of creeping. Here was the real beginning of this child’s life, the real birth and awakening of her brain and body. Moshe says, “Movement is life.” From that moment on, this imprisoned, in pain, and truly miserable infant was snatched right out of the jaws of Hell, as were we, her parents and family. Though it was I who gave birth to my daughter, I believe that it was Anat and Moshe who truly gave her life… and life quality.

We followed Moshe everywhere that he happened to be in this world until he died, when Liz was three years old. We traveled to New York, to Washington, to Toronto and to Massachusetts. We would pick him up at the airport in Chicago when he would be passing through en route to California, we’d take him to a near-by motel to work with Elizabeth, and then would deliver him back for his connecting flight. We even took Liz and her three year old brother Adam to Israel to work with him and spent as much as a month at a time there, on three separate occasions, to receive his work.

One of the most precious legacies that Moshe left to us was this beautiful, incredibly gifted and talented woman, Anat Baniel, a practitioner trained by him, who was no more than a girl herself in those days old when she first began to work with Elizabeth side by side with Moshe. When Moshe died, he bequeathed Elizabeth to Anat as her sole caretaker and therapist, and this she has been to this very day. Lou and I followed Anat in the same way that we had first followed Moshe, taking time from our personal and professional lives to bring Liz to her wherever she was, for one week out of every eight weeks throughout Liz’s growing up years. At one point, we even brought Anat to Chicago from her home in Jerusalem to work with our daughter. The optimistic results were well worth the personal and financial sacrifice; there was simply no question about it. To this day, Liz still sees Anat for lessons whenever possible

Regarding Anat, - I am going to go out on a limb now to make a statement which I hope is not inappropriate to say - I believe that she is, without question, the most talented human being on this earth in terms of what she has been able to accomplish with children through her work. As an expert in the Feldenkrais Method, she developed, expanded and evolved this technique into her own Anat Baniel Method for children based on the work of Dr. Moshe Feldenkrais… in my opinion, taking the work even BEYOND where Moshe had been able to go in terms of diversity of function, technique, child and parent relationships, and professional training.

It is always interesting for me to hear the parents of Anat’s child students speaking about how they can observe differences in their child after a single lesson, because we did, too… as amazed as we were to observe Liz’s continuing perceptible gains, it never ceases to amaze me that such miraculous results happen so consistently for so many other children as well. Our lives together with our daughter… which started out with such fear and depression, such disillusion and trauma, not knowing what was to become of us all… became so full of hope. To this day, I am always a little taken aback when anyone perceives or refers to me as the mother of a handicapped child. I don’t see myself this way at all, nor do I see Liz that way. To me she is simply one great girl who has had so much to offer us and to everyone who knows her …and we are the luckiest parents who ever lived to have found Moshe and Anat. Our entire family moved from a state of darkness into the light as Moshe and Anat released and nurtured the human being inside of Elizabeth.

We did what we did for our child, because it was her due and our responsibility, because we loved her, because we felt there was no alternative. Quite honestly, we did what we did, too, for ourselves. Living with despair is an intolerable way to go through life. Replacing despair with optimism and hope, the achievement of potential, the energy to keep moving forward, the motivation to not stop till you are there, the knowledge that you are upgrading your child’s existence day to day despite her limitations and that tortuous first year was of invaluable benefit for us. Without hope there would have been no life to speak of… for her or for us.
Abigail Natenshon

Wednesday, May 21, 2008

Broke her J-Tube and First bout of pneumonia

Mikki, Ava's home health nurse left today around 6pm. Literally 5 minutes after she left the tip of Ava's 'J' tube (feeding tube) broke off in my hand. UNBELIEVABLE! I needed to take her to the hospital to have it replaced under x-ray, but couldn't transport her by myself! I called everyone I could think of and finally called Michelle, a friend from childhood that lived down the street, and she was nice enough to drop her plans for the evening and take us to Children's. I was feeling pretty low at this point, "We were JUST there," I thought. On the way there I noticed her pulse was in the 180's and 190's but since she has a history of fast heart rate I chalked it off to being irritated, hungry, etc. The hospital got us in and out in about 30 minutes, and on the way home Michelle kept asking me, "Are you sure she's ok?" (She's a nurse, so was thinking the fast pulse and fast breathing was suspicious of pneumonia) but I assured her "It was nothing, it's just Ava." Sure enough, by the next afternoon, she spiked a fever of 104.8 and was diagnosed with pneumonia. We arrived in the ER with her doing pretty good really. Fever was under control, pulse was in the 150-160's, oxygen was in the low 90's. Was I failed to recognize were the signs of respiratory distress. The nurse that was checking us in kept looking suspiciously at her pulse-ox and noticed it had dropped from 90 to 79 with the nasal canula ON. So she very calmly asked us to follow her and directed us into a critical care room. Next thing I knew there were about 6-7 Dr's around her and she looked very pale and was listless. It came on so fast it was incredible. She spent a total of 3 day in the hospital this time.           

Monday, May 19, 2008

Found blood all over her blankets - scared me to death

Woke up at 6:00am to give Ava her meds and looked in on her before heading to the kitchen. I had to take a second look. Her face was covered with this gooey brownish looking stuff and it was all up in her hair and caked around her lips. Then I saw even more around her head on her blankets. My heart started beating really fast and I yelled for Kenny. He took one look at her and said, "It's blood." We called my Dad to come watch Aohdan, and headed to the ER. This was out first trip back since going home and I cried all the way there. At the ER they informed us that this is a common occurence with kids that have feeding tubes, it is called *Gastritis* and basically they said it happens when the tube site gets irritated and bleeds from the inside, then the child throws up the blood. Sorry for the graphic description:)           

Saturday, January 12, 2008

She tried to open her eyes for the first time!

Ava tried to open her eyes today! For the past almost 2 weeks she had remained 'asleep' and the staff told us frankly that they didn't know when or if she would wake up. Today was a good day. I felt renewed in my faith. For the first time since Ava was born, I left the hospital with a smile on my face. Kenny told me later that he, too, needed to see her little eyes. It renewed his hope and faith whe he really needed it.

Thursday, January 10, 2008

James 1: 2-4

James 1:2-4
"Consider it Pure Joy, my brethren, when you encounter hard trials of many kinds. Because you know it is the testing of your Faith that produces patience and endurance. But you must let endurance have it's full effect, so that you may be mature and complete, lacking nothing."

Wednesday, January 9, 2008

First MRI

Had first MRI today. After seeing her off, Jen and I decided to go to lunch and shop for baby clothes. The distraction was just what I needed. At lunch, Jennifer kept saying how sorry she was that we were going through this. I told her it was only God that was getting us through because I personally didn't have that kind of strength. Later that night I had a complete and total breakdown, hysterical sobbing, irrational thinking. I remember Kenny telling me to let it out, to do whatever I needed to do to get through. I cried so hard my eyes were swollen and sore the next morning.

Saturday, January 5, 2008

I kangaroo'd with Ava today

We got to 'Kangaroo' with her today! This is skin-to-skin contact. Later that night at home, Kenny was heading out the front door to do chores and he pulled out the front of his short and smelled it. "I can still smell her.." He said. 

Thursday, January 3, 2008

Ava's First Bath

This was Ava's first bath, and I don't kow if you can tell from the pictures, but she is completely limp and still in a coma. The nurse in the photo (who we had several times during our 3 month stay) was sooo sweet. I remember my husband and I were just sitting there by her bedside, numd really, and she asked us if we wanted to help bathe her. I don't know why it sounded odd to me, but it did. I guess because she was hooked up to so much stuff if was very intimidating. She instinctively knew that getting us involved in her care would help us to get our minds off the gloominess of the situation. She found out from Ava's chart, that we had attempted a home birth and ended up transferring to the hopsital. She later told me in private that, she too, had a homebirth and that her little girl had died due to a birth deformity. She must have sensed that maybe I was harboring feeling of guilt, because she looked me dead in the eyes one day and said, "This is NOT your fault. No one caused this, not you or anyone else." Bless her for saying that!

We held her for the first time!

We got to hold Ava for the first time! It took 2 nurses to move her. One to hold her, and one to hold all her wires, but I got to hold her and that was all that mattered. She made it to the 3 day mark, and they said she wouldn't make it 24 hours.

Wednesday, January 2, 2008

Wednesday, January 2, 2008

I wake up to Kenny listening to voice mails from well wishers. He just shook his head at the outpouring of love for our little girl. Pastor Bob and his wife, Debbie, had just left the hospital and were letting us know that they had prayed over Ava and commented on how beautiful she was. After spending the afternoon at the hospital with Ava, we stopped at Jennifer's to spend some time with Aohdan. it was sooo good to see him. I had a whole new appreciation for his vibrance and health. When he heard Kenny and I come in the back door, I heard a little voice say, "Mommy?! Daddy?!" He came running around the corner and literally jumped up in my arms. I just held him and bried my face in his shoulder and breathed him in. It felt so good. I handed him off to Kenny and wiped away tears just in time for Jen to wrap her arms around me and I started crying again. She assured me he could stay there as long as we needed him to and not to worry. That night as we were getting into bed Children's called us to let us know that Ava's little heart had sped into the 280's, a condition called 'Super Ventricular Tachycardia' or SVT. She said it was not life threatening but something to be concerned about. I felt the beginnings of a panic attack coming on and decided it would be best to take a sleeping pill. My mind was racing all over again.

Ava - The First Weeks...

This was the site that greeted us when we arrived at Children's Hospital J4 NICU. It was approximately 10:30pm on New Year's Day (what a way to celebrate huh?) and I was still physically in a great deal of pain from the emergency forceps birth. Up to that point, neither Kenny or I had even stepped foot in a NICU, let alone to visit our own child. I had not even gotten to hold her at this point, and would not do so for 4 long days... The Dr's informed us that she had suffered a severe 'insult' as they called it, to her brain resulting from a lack of oxygen during her birth. Shortly after her birth at St. Ann's, she started having siezures and was loaded with Phenobarbitol and Dylantin, 2 medications commonly used for treating seizures. Ava did not blink after birth, neither did she cry, suck, or move in any way. It was as if all of her reflexes were erased in the blink of an eye. I kept asking the Dr's, so when will she wake up? When will she cry? I saw the look in their eyes when they explained they did not know. I finally had one Dr that was frank with me. After being in the NICU for about 2 days, this Neonatologist vry seriously told me, "We don't know yet if she is even going to survive, so let's take it one step at a time..."

Tuesday, January 1, 2008

Tuesday, January 1, 2008

I wake up at around 5:00am on New Year's Day. It feels like I'm waking up from a bad dream, but I know it is real. It is surreal to think that most of our friends were out partying it up the night before and have no idea of the tragedy that has taken place. I'm debating on how best to spread the news. I'm still in shock myself. I decide to send a text message to a few people in our our circle of family, friends, co-workers and our River church family. I tell everyone that there were major complications with the birth and make the first request for prayer. I close my eyes and thank God for saving Ava's life and just ask Him to remain close to us as we venture into the unknown. I look over and Kenny is still sleeping. He looks so peaceful. Dr. Murnan, the gracious soul who just 'happened' to be at the right place at the right time, came in to check on me. He apologized for not being able to do more. I thanked him for being so kind to us and for thinking of Ava. Shortly after our nurse came in and gave me something to help me sleep as I was still wired with adrenaline from the delivery. I fall asleep for several hours. When I wake again it is close to lunchtime. The Neonatologist comes in to talk to Kenny and I. He paints a very grim picture for Ava. "Birth asphyxia, organ failure, seizures, brain damage..." I had to quit listening, I just went numb. Just the day before I had been laboring at home, picturing an easy birth surrounded only by my midwives, my husband and two of my closest friends. I should be enjoying my baby right now! I was struggling with guilt.."I should have pushed harder!" "I should have left for the hospital sooner!" Feelings of guilt ran rampant through my mind. "It was MY fault she was in this condition!" But Dr Murnan had so graciously reminded me that no one could have forseen what had happened. A plencental abruption, or, premature separation of the placenta from the uteran wall. "The outcome would have been the same whether you were here or at home, we lost her so quickly..." His words kept running through my mind over and over again.
Kenny and I finally got to see her around Noon that day. It was at this time that the Dr told us for the first time that she may not live. "WHAT?!" My mind screamed for her. I just wanted to crawl up on the warming table and take her place. I asked the nurse if I could touch her. She said "Yes" but not to make any stroking motions as it would cause her even more distress. I bent over and looked closely at her little face. She was perfect. Curly black hair, cute puckery little lips, it was hard to imagine that she was so, so sick. They were going to transfer her to Children's Hospital "So she'll get the best possible care," they said.
By the time we returned to our room, the phone calls had started rolling in. Shortly after lunch, I heard a knock on the door and when it opened there stood Eric Coss and Laura Richards. I just started crying, it was so good to see them! Laura just wrapped her arms around me and kept saying over and over, "I just needed to give you a hug!!!" We all prayed such a sweet prayer for healing and strength and Laura commented on how she just felt 'Peace' regarding Ava. After Eric & Laura left, Debbie Swanger and the girls stopped by. They all gathered around us and prayed hard against enemy attacks, and also for God's perfect peace to surround us. The love we felt those first few hours after Ava's birth still overwhelms me. It was an outpouring of the likes I had never seen before. At one point Kenny and I counted several dozen churches in 3 different COUNTRIES praying for our baby girl!
Later that same day, The transport team from Children's Hospital came to St. Ann's to pick up Ava. They assured us she was in good hands. The hospital gave me an early discharge so that I could go and be with our baby. I felt energetic and ready to go. It was as if the trauma my body had experienced the night before had ceased to exist. The nurse gave me a pain killer before I left to help out and advised me to 'take it easy' "Use a wheelchair" she told Kenny. "Don't let her walk any more than she has to." When we arrived at Children's I refused a wheelchair, telling Kenny I was 'Fine.' He just shook his head at my stubborness. When we arrived at Ava's bedside, her nurse handed me a box of kleenex and said the Dr would be there shortly. This was a common occurence in the NICU as I would discover in the weeks to come. A new patient would arrive, the Dr's would gt them settled in, then the father and mother would arrive and the nurse would always hand the mother a box of kleenex. I did cry, of course, bawled my eyes out actually. The Dr looked at me with sad eyes but told us matter of factly that statistically it didn't look good for Ava. He asked us at that time if we prayed and we replied, "Yes." "Then I would pray," he said. We left the hospital and drove home. Most of the ride was in silence. We were still numb. My body was in pain from walking the entire length of Children's Hospital (twice). It felt like my insides were loose, and I was bruised from the medical staff shoving their arms forcably into my rib cage and belly in an attempt to get Ava out quickly. I just crossed my arms around my middle and cried silently. "God, I really could use you right now because my world is pretty much crashing down around me..God? Could you just let me know you're with us?" I kept talking to God silently all the way home. I had always believed in God and Jesus. But now I was being tested far beyond where I ever thought I would. I looked over at Kenny.
"Yes?" He said.
"I want to pray together..on our hands and knees at night. And I want to do it before we get into bed. God deserves more than us saying half-hearted prayers just before we fall asleep."
"Ok." He replied.
When we arrrived at the house memories of her tragic birth were EVERYWHERE. The empty birthing pool where I had labored just the night before. The video recorder laying on the kitchen table. Blood splatters on the bathroom floor. The unused receiving blankets still wrapped up in the heating blanket. Why?! Why?! Why?! We had been brought to our knees and only God could bring us through this.