Monday, April 9, 2012

Week 4, Easter Weekend (4/9)

Happy Easter, a day late, but it doesn't seem like we still shouldn't celebrate the resurection of Jesus, that is a miracle that we should be thankful for in each moment.  So, thank you, God, for your sacrifice.  Thank you that you now see the blood of Jesus when you look at us, pure, blameless, spotless, righteous; and it is only by the blood that we can now come to you freely and speak with you in prayer, that we can draw near to you and you can look on us with favor as you are a righteous God, and you can have nothing to do with sin, you must punish sin, and the wages of sin is death... that is what we deserve, and that's the price that Jesus paid for me, but thank you Lord for conquering death, you are alive and well and you hear our prayers, and you walk with us and carry us each day.  Thank you, Lord.  Thank you that we got to spend time yesterday with our families, and pray together, and read your word together.  Thank you for your sacrifice, thank you for family, thank you for your mercies each day, thank you that you are in control of our journey, thank you for your love, thank you for drawing us back to you when we stray, thank you for forgiving us of our sins and our faults, thank you that we can approach You the God of the Universe whom the winds and the waves obey, whom the earth quakes for, thank you that You hear us, thank you that you are drawing literally thousands of people accross the world to pray for your child and servant Thatcher Caleb, our son.  Lord, with each breath that he breathes and beat that his heart makes, it is a song of praise to your glory, because outside of You, we would not be sitting here with him today.  So, God thank you for each moment that we get to spend with our son, thank you for each breath, thank you for each movement, thank you for each sigh, thank you that you have shown yourself to be in control.  Thank you that our hope is in You and not in the doctor's words, or in images, but in things unseen, God, for you are greater, and your ways are higher than anything we can do here, and You are able to do immeasurably more than we could ever ask or imagine.  God, we pray for healing for Thatcher, we pray for a strengthened wind pipe, that you would be the strength in his airway, that you would allow Thatcher to take deep breaths that he is trying so hard to take, that you would give him strength and perserverance to keep trying to take deep breaths.  God would you provide direction for us as we face decisions that we are not ready to make, we need clarity, we need to know your will, we need to feel a peace that surpasses understanding this week, Father, honestly, we ask that you would do as you did before and literally take this decision out of our hands, that you would act in such a way that the decision is made by you, that it is undeniably You, so that You may receive the glory and praise.  God we want to be in your presence, we need your strength and your peace, please fill this place, fill our little NICU pod, we need you, we need more of you.  Come down, and God stay!  We need you, we desire you, we desire more of you.  God we take refuge in You, you are our stronghold and our strength, it is only in You that we find hope and peace, so God stay.  Lord, heal Thatcher, we know you are able, we know that you can, whether by speaking to Thatcher and simply whispering in his ear to be healed, or through compasion, or through a thought, or by faith, God, you are able, heal him God, bring yourself glory through the healing of your servant!  Please!  God we are desperately begging you, pleading that you would heal Thatcher.  With every breath that he takes it sings of Your glory!  Grant him endless breaths!  With every beat of his heart, it resounds your praises, Lord, give him endless beats!  We desire for you to be glorified through Thatcher, that is being done, but God, let it continue, heal him, Lord, please.  Let your glory fall down like rain, inescapable, let it drench your people, let it be so obvious that we literally feel your presence and your glory around us.  Lord, we submit to your thoughts, your ways, and your will as they are higher and greater, and You are holy, and we can't compare; but God please enlighten us to your thoughts, your ways, and your will because we can't see a better way to bring you glory than for for you to heal Thatcher.  At the root of all of this, we understand that You deserve glory, and it is our desire that you get the praise you deserve, and we praise you for what you've done already, it just feels, in our spirits, like you are not finished... God, just show us Your glory.  Heal Thatcher.  Be glorified and praised in all the earth.

Thank you everyone for praying with us, and for Thatcher, and most importantly for praising God.  We have had a little bit of a rough week/weekend with doctors and nurses letting us know what their opinions are and where they believe all of this is heading.  They have presented us with some choices that we need to make, and they have really pressured us to where it feels like these decisions need to be made within the next week. 

Thatcher is on nasal cannula, and is doing well in terms of his drive to breath.  He has shown that he is a fighter and wants to thrive, but his windpipe is creating a blockage of sorts.  You can hear him trying over and over again to take deep breaths, but he is unable and so he resorts to shallow quick breathing.  Basically his windpipe collapses if he takes a deep breath to quickly.  If you were to hold your breath for a while underwater, you come up and you gasp.  Thatcher is essentially breathing quick and shallow providing enough oxygen to keep his body functioning, but every once in a while he needs to gasp, it's when he gasps that his airway collapses and you hear essentially a wheeze, what they call "Strider", where the breath is very labored, and often times he'll try 2 or three and then get scared because he is not getting the oxygen he needs so he just clamps down.  These often induce our "blue spells" that we are still dealing with.  This is why our prayer is for a strengthened airway.  He has shown the desire to breathe deeply, and his lungs have the capacity to breathe deeply, but he is unable to, due to his airway collapsing.  With this we are posed with the question of what is causing his airway to collapse, and we've basicaly been presented with two possible explinations.  One, his brain is not sending the correct signals to keep his airway muscles flexed, or tightened when he takes these deep breaths.  (Deep, quick breaths cause more pressure on your windpipe, you can try it if you don't believe us, or you can just think of a straw that if you pinch off one end and then suck on the other it will collapse, that is the picture of Thatcher's windpipe.  The more pressure the more collapsed the straw becomes.)  Two, his windpipe is simply weak at this time, or too small, underdeveloped.  If it is his brain, he will not grow out of it (so the doctors say), if it is simply an underdeveloped windpipe, he will probably grow out of it within a couple of years.  The doctors seem to think it is his brain and he will not grow out of it as his brain will never learn to tell those muscles to contract and tighten at the right times.

With that said they presented us with our options: Hospice care or a Tracheostomy.  This decision has huge implications on Thatcher.  The Hospice option is we basically go home as we are at this time, and we watch Thatcher struggle and eventually suffocate, as the rate that he is breathing currently is not able to sustain life.  With the Tracheostomy, we have to undergo an extremely invasive and severe procedure that we are not even sure if Thatcher can make it through.  He has shown to get extremely over stimulated at even a blood draw with an elevated heart rate and resperatory rate (his heart rate normally rests around 120-130 right now, it was at 180 for about 7 hours after the blood draw).  He would have to pull himself out of anesthesia and deal with the post operative pain and the healing process.  The doctors have basically presented these options to us with the caveat that Thatcher will have a very limited life span, even with the Trach, it won't solve his problems and he will most likely pass away in a few months.  The doctors have all said that they would recommend the Hospice option simply because they don't believe that Thatcher's quality of life will really benefit from undergoing the surgery.  Again, we proclaim that God is able to do immeasurably more than we ask or imagine, and we have no doubt that God is able to take either decision and use it for good and for His glory.  However, this decision is weighing extremely heavily on us, and this is the decision that we desire for God to literally take from our hands and make for us, and if not, that He would provide absolute clarity and peace about one or the other, because neither is a good option.

In addition, we are still riding the phenobarb rollercoaster, trying to find a level that works for him in terms of supressing the seizures but not supressing him and his desire to breathe.  This weekend has been tough as his level got too high and his breathing was even more labored and even more sporadic.  There were blue spells pretty often and we are still trying to find a good level for Thatcher.  We continue to pray that God would cast out the seizures.  We tend to picture them as demons, we know that even the demons know and fear the name of Jesus, so we have prayed that in the name of Jesus they would leave Thatcher's body, and by the power of the Holy Spirit that lives within us, that God would cast them out, and we will continue to pray for this as we know that God is victorious over these forces of darkness, and over these demons.  Please join us in prayer that the seizures would be cast out, and would cease to torment Thatcher.

God, our hope is in you.  It is in your word, and your promises, in your character, and your son.  We believe that you are in control, and we trust you.  We lift our prayers up to you, we lift our praises up to you, and we lift our son up to you.  May your name be lifted high, God.  It is in the holy, precious, and living name of Jesus that we pray.  -Amen.


36 comments:

  1. Eric & Whitney, I know Robin from church and have been following your family's journey. These photos are some of the most beautiful I have ever seen! Oh and the bunny ears, adorable!! What a wonderful gift from God you have been blessed with. I am praying for you both and for Thatcher. I love you all and I don't even know you. God
    Bless!

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  3. I know you find yourselves at such a difficult crossroads with this decision. We will be praying for wisdom for you all, and a peace that passes understanding. I'm comforted that God has orchestrated every detail of Thatcher's life already, right down to the very number of hairs on his head! May you be comforted with that knowledge, that God is not caught off guard by this, and that His perfect will is being accomplished. There is no evil that can overcome God's perfect plan! May you be comforted by the Source of all comfort! Much love from all the Pixleys

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  4. Thatcher is such a beautiful gift from God. I want to encourage you . . . twelve years ago at 26 weeks gestation my cousin gave birth to a 2.6 ounce blessing from God. The docs at the Children's hospital told them to simply let him go, there was no chance of his survival. He is now 12 years old and has been off the trach for four or so years now. He goes to regular school and is doing very well.

    Only God knows what His perfect plan is for Thatcher . . . Stay strong and Pray, Pray, Pray!

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  5. Praying for your family - that God's will be known and his perfect peace comfort you.
    Love, Erin

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  6. Thatcher is a gift from God. I know that you have been fighting hard for him and so many people are rooting for you!!! Don't lose hope!!! Babies have an amazing ability to heal and survive!!!

    Based on the limited info I have reading your blog, it seems like the medical team is at a loss for solutions right now. I hope that before you get pressured into making a decision, please, please consider getting a second opinion...

    There are so many people praying for you and wishing you the best outcome possible. I pray that God grant you strength and wisdom. I pray that God grant Thatcher His healing touch. Miracles happen everyday - may you be blessed with one.

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  7. Sweet Thatcher and the journey of your family have personally brought me closer to God and more in depth with my faith...to read about your strength is phenomenal...love and prayer cover you...and remember that GOD'S GOT IT *smile*

    With Love,
    Kendall

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  8. Praying for you and your sweet Thatcher! May God give you an overwhelming peace and unmistakable clarity in this decision.

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  9. I use to work in the nursery at crossroads and follow your story through friends. Your faith is encouraging and contagious. Thank you for staying strong in your faith and sharing your story. I cannot explain this feeling, but I have a feeling that I need to share it with you. I have an overwhelming feeling "that everything thing will be ok." My experience as a mother does not compare, but when I had my tough moment of seeing my 2nd daughter in pain for hours; day after day, month after month, and had no answers the only thing people could say was,"it will get better." It was hard to hear these words, because I wanted to know WHEN? There were a lot of tears and frustration as a mom to see my child struggle. I believe god is holding your hand strongly through this and he will never let go. I too will say it will get better, I don't know when and I don't know how, but it will. I feel by seeing your smiles in these pictures you have been blessed. God is an almighty healer, and everything has a purpose and a reason. What's awesome is when we find that reason. There are many blessings in your future! I'm continuing to pray for your whole family and those that your are touching with your faith and journey!

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  10. Beneath the supporting hands of friends and helpers, we feel God's strong grasp, and we hold on, no longer alone. Praying, praying, praying for healing and mercy for Thatcher and for peace and comfort for Whitney and Eric that surpasses all understanding. Thank you, Jesus, for answers to our prayers. Amen.

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  11. We are praying for your strength as you continue to put your faith in Almighty God. He is faithful and His Word never changes. We are believing God and thanking Him for baby Thatcher's miracle. We pray right now that God will continue to give you peace and speak through you as you talk to the doctors. Amen

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  12. Praying for you all --Thatcher is just so precious. Remember that the same power that raised Christ from the dead lives in you--- I pray God's answer for you is a healing for your dear son----Even though I have never met you--we are joined together in Christ--so I send love to you and pray for God's comforting arms to be surrounding you---- to God be the glory!!!

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  13. I have followed your blog since before Thatcher Caleb was born. I so admire your faith, trust, and love for our creator. I am continuing to pray for Thatcher and for your family. Please know that any medical decisions that you are forced to make are also in God's control. I totally understand your anxiety and indecisiveness on feeling that the decisions are yours because that is the way medical professionals sometimes make it seem. However, your faith and trust in God will ultimately make the decisions his...you are just a vessel. And truth be told, if we as humans do make a decision that isn't within the will of God, he is still in control to change the outcome of any decision made. I truly believe that God is going to continue to use Thatcher and your family for his glory. He has already done mighty things...and his mercies are never ending. Know that you are loved and prayed for regularly even by those of us that do not know you personally, your willingness to share your journey of faith has bonded many of your brothers and sisters in Christ even without actually meeting you. Much love and prayers!!!

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  14. Whitney and Eric,
    I have been following your blog since Sherri Melear posted it on Facebook. I am Jon and Michael Avery's mother. Michael and Jon have an older brother, Kyle, who was born on Christmas Eve in 1981, with severe Hydrocephalus resulting in three pounds of spinal fluid and less than 10 percent of his brain. I have been reliving that experience through your blogging entries. Needless to say the prognosis for Kyle was that he would not develop beyond a four week old infant. There was extensive discussion over whether or not it was worth it to even shunt him. Our neurosurgeon,Dr.Miner, who was Chief of Neurosurgery at Herman Hospital in the Medical Center at the time, was the only doctor who thought we should shunt him because it was the most humane thing to do because his head would continue to expand. His advice to us was that Kyle would show us the way and help us make those tough decisions. All the tests indicated that Kyle would be in a vegetative state for the rest of his life. We shunted him, took him home and prayed. After a few months, Kyle started to show us where we were going on this journey. There have been many ups and downs especially when he was two and had to have several shunt revisions due to infections. After that he ended up with a seizure disorder and was Life Flighted to Herman Hospital twice. He ended up having status seizures which can only be controlled with loading doses of seizure medications. However, eventually after six months in ICU, the infections and seizures were controlled. We took him home and started all over again to try and resume some normalcy to our lives since we did have another child at the time, four year old, Chris. We celebrated Kyle's 30th birthday this past Christmas Eve. He still lives at home and works as a cart pusher at Walmart on 242, way beyond any of the predictions. Kyle is very religious and enjoys attending church at the Fellowship of the Woodlands. He is very appreciative of the simple things in life as well as his family and friends. He has never been much of a reader, but he now reads the Bible nightly. You might want to check him out on Facebook. My advice to you is this: Read and learn as much as you can about Thatcher's medical issues so that you can make the best decisions on his behalf. You both need to be his advocate, his voice. Do not let the doctors sway you one way or the other. Seek medical advice and second opinions from other doctors before you make any critical decisions. Do what you know in your hearts is best for Thatcher. You must give him a chance since he is fighting so hard to live. God is showing you the way through Thatcher's actions and responses. Whatever happens, you can rest assured that you did everything possible and acted in Thatcher's best interest as loving and caring parents. I have walked in your shoes and down that path so if there is any way I can help or if you just need to talk to someone who has been there, please contact me.

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  15. I'm going to keep this as short as possible and simply say DO NOT listen to any doctor that says your son, Thatcher Caleb, will not make it through surgery. DO listen to your heart and more importantly DO listen to God. Through God all things are possible. My wife and I are living proof that miracles can and do happen, as we were both born with the disability Spina Bifida. Doctors constantly told our families that we would not live and if we did live we would not live productive lives. Wrong and Wrong. We are 30 and 29 years old and still going strong. Watch God perform yet another miracle with your son and enjoy watching him grow into the successful man that God wants him to be! From our family to yours, God Bless!

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  16. Baby Thacther is def an angel sent from God. I am a nurse and work with disabled children. I know imagineing your child with a trach is hard not knowing what will come of it, but I have seen many children that had trachs when they were infants and have since had it removed and are doing well. Of course, they still have struggles and things they can't do. I will pray for baby Thacther and your family.

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  17. A friend of mine sent me a link to your blog today. First let me say that Thatcher is a beautiful baby boy! What a precious gift from
    God. My son, John, was born at 33.5 weeks and spent the first 3 months of his life in the NICU. He also struggled with high carbon dioxide levels, a flimsy airway, strider, and a continuous need for oxygen. At two months, it was decided the best course for him was a tracheostomy. Almost 7 years later, we still have that trach but he lives life to the fullest every single day, even with all of the challenges he has. I know you guys are exhausted, but if you find a minute and feel so inclined, you can check out my blog, http://littlepostcardsfromholland.blogspot.com. You can read more about our journey there. I have to say that we were much further into our journey than you are before we realized that God has a specific purpose for our boy. Stay strong and faithful, and he will show you the right course to take. I was recently reminded during my devotion about the story of God leading the Isrealites out of Egypts and out of Pharoah's hand. God could have led the Isrealites on a more direct route from Egypt, but he chose to take them the long way. One reason was because God simply wanted them to take him at his word, and another reason is because there were lessons to be learned along the way. God doesn't always lead us through the shortest path to get to the destination he desires for us. Following God is a walk of faith and he often wants us to simply wait on him. I am praying for Thatcher tonight and for the rest of the family. I pray that God will make known to you what decision he wants you to make, and that you will find a peace that only he can give when you make that decision.

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  18. PRAYING PRAYING PRAYING

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  19. Praying Colossians 1:9-12 for all three of you in the week to come! Love y'all!

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  20. I became aware of your situation through Sherry and I must say that what you all have been dealing with is truly heart breaking. I will be praying for you all.

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  21. Dear Lord, life sustainer, life giver, go to Thatcher right now. Breathe your holy breath in him! We must have you Lord. We need you. We call on your precious name, the strong name of Jesus. Be with all the family today and wrap your loving arms around them. Be close and let them feel your love and all the love we send them. We praise you Jesus. Thank you for all you are doing.

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  22. Do not be afraid to trust your physicians, and take their advice to heart. Their wisdom comes from God. Praying hard for your family.

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  23. We do not know one another. I began following your blog after a friend posted a link requesting prayers for you. Thatcher has since been in my constant thoughts and prayers. I am continuing to pray for God's healing for Thatcher as well as a peace and stength for you.

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  24. Love you Thatcher. You are in my prayers and in God's hands!

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  25. I have been following your updates through Kristen Welch's blog. Thatcher is a beautiful baby and you are a beautiful family!!

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  26. Eric and Whitney,

    I've read your entire blog and am fascinated at your faith, strength and courage. Thatcher Caleb is an absolute angel! What a cutie pie!

    I want you to know that Thatcher's story is inspirational. Your faith is contagious. The common theme in each posting is --- "BUT GOD!" Thatcher has proven to be a fighter. The doctors can say what they want, BUT GOD! has the final word. I pray that God give you strength and wisdom to make the right decision for Baby Thatcher Caleb. I also declare that Thatcher Caleb is healed. Let's all CLAIM IT in the mighty name of Jesus!!!

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  27. The Lord is carrying all of you through this. Continue to let him. I pray you continue to feel his arms around you and know he will lead you. As your feet begin to leave solid ground embrace his mystery. Praying for God's miracle in healing your beautiful little guy. Thatcher is yours Lord. Thank you for this little life chalked full of blessings. Breath your fullness into every corner of his body. We thank you father for the unity we have in the body of Christ and the power that is released through prayer. May you continue to be glorified!

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  28. Eric and Whitney we are still praying fervently for you and Thatcher. We believe that God knows your heart and he knows Thatcher completely. He is the giver and taker of life regardless of what the physicians say. If it is God's desire for Thatcher to live and thrive it will happen. If it is his plan that Thatcher is here to bring a little bit of heaven into the lives of all of these people than His will be done. Rest in the Lord, trust in Him and he will direct your path. Praying that God will show you His will clearly and in his perfect timing. God bless you and keep all of you. Jimmie and Elsa Dotson

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  29. I am deeply touched by your exemplary faithfulness to our Lord. Thank you for speaking into my life. You're precious son is a miracle and I believe God will carry you through this.

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  30. Praying 2 Thessalonians 3:16 for y'all.
    "Now may the Lord of peace Himself give you His peace at all times and in every situation. The Lord be with you all."

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  31. Eric and Whitney, you don't know me, but you know several of my friends. I see your blog posts through friends on Facebook quite consistently. I was praying fervently for your little family this weekend. Five years ago, we spent Easter in the NICU with a little girl with a grade IV intraventricular hemorrhage and severe hydrocephalus who wasn't expected to live. We have NICU pictures in a bunny onesie with stuffed rabbits abounding and your blog entry caused flashbacks to a 15 minute Easter service in the Memorial Hermann chapel.

    You well know that God has a perfect plan for each of us, and we cannot know His vision for Thatcher, but please - listen to Him, and to your hearts, and to sweet Thatcher, and don't let the neurologists convince you of any prognosis that you don't know in your heart is the truth. If you can tell he's connecting with you - don't listen to anyone who tells you that he has no organized brain activity. There is a LOT we don't know about the brain, as several neurologists and neurosurgeons have admitted to me in the last 5 years. Your neurologists are well-educated, and they know the probabilities of the various outcomes. However, you know your baby, and you know the power of God. God entirely changes the odds.

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  32. Today my devotional was from Psalm 119:73-80. It is my prayer for Thatcher. He is so wonderfully made, so beautiful, handcrafted by God. Praying for your family made known to me through a friend of your from college days. Blessings.

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  33. Checking for any news I might have missed. Letting you know you are still being prayed for regardless of new updates!

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  34. May God continue to show you the way of His plan for Thatcher. Keep your faith and enjoy every precious moment with your beautiful baby boy!

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  35. "The Lord is a refuge for the oppressed, a stronghold in times of trouble." Psalm 9:9

    I've seen this to be the theme of your story, and I pray that it continues to be a comfort to your family. The body of Christ is behind you, praying daily for healing, clarity, and HIS peace over y'all!

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