Friday, November 30, 2012

Etched On My Heart

There are pivotal moments in your life that change you in an instant, and in that moment you are forever changed.  For me, those moments are:
  • the moment I committed my life to my Lord and Savior 
  • the moment I said "I do"
  • the moment I became a mom 
  • my baby's last breath 
If I were to meet you on the street for the first time, my second "moment" would be obvious by the ring on my finger and most likely the man who's arm I am hanging on.  I pray my first "moment" would be evident to you by the end of our conversation.  But, you see, my last two moments would go unnoticed.  You would leave our conversation not knowing a HUGE part of who I am.
My struggle with how to handle being changed (socially and emotionally) by Thatcher can be read in a much more eloquent post entitled "What's a Mommy To Do?"  If I figure out how to link that post to this one, I will insert it here What's a mommy to do.  If I don't figure it out, you can go find it yourself... sorry, I do not possess the gift of tech savviness.
Thatcher has changed me for forever and I have struggled since day 1 without him with how to show that he has altered my life.  The morning after Thatcher took his last breath, after I posted "What's a Mommy To Do?"  I looked up at my husband and family who were scattered all over the floor in our bedroom (side note: they weren't supposed to be there.  Eric and I set up our bedroom to be our "safe place" for us to retreat to when we felt overwhelmed and wanted to get away from people but my family would just follow me. It would start with someone popping his/her head in to check on me then they would trickle in one by one ... they never seem to follow the rules!  Don't tell them, but I don't mind, I have some really precious memories from those days with them littered on our bedroom floor.)  I looked up and said "I am getting a tattoo. I am absolutely getting a tattoo"  It may seem silly to you, but I needed a permanent, physical change to mirror the change in my heart.  And what is more is more permanent than a tattoo?  Eric smiled through tears and agreed that he had been thinking the same thing ...  and one by one my family members agreed that they needed a tattoo as well :) Although, my dad's said tattoo got smaller as the days passed from "THATCHER CALEB" to "LION" to "GRR" then he settled on getting a dot of courage.
Two weeks passed and Eric and I were out at dinner for my birthday when we landed on the discussion how God used Thatcher to change our lives.  We asked you all how he changed yours but Eric and I had yet to put into words how exactly Thatcher changed us.  I thought for a minute then began to explain that from the day I saw THE 2 pink lines God began to urge me to trust Him.  With a miscarriage the month before, God emphasized my faith did not belong in HCG or progesterone numbers, or even ultrasounds but in Him.  God and God alone was going to take care of this baby growing inside of me.  My need to trust in Him alone was magnified when we found out that Thatcher had major brain issues and even more when we were in the hospital.   God also used Thatcher to teach me how to have courage through Him.  Taking a stand against doctors and nurses, having to find my own voice and know what/who to listen to was hard, especially so when you are a people pleaser like myself.  Looking back there were confrontations I had to have, challenges we had to face, endless nights in the Ronald McDonald House, unspeakable things I would not have been able to face had they not been for my son.  God used Thatcher to take my heart captive and show me how to Trust and take Courage in Him.  As I said these things aloud to Eric, I realized these attributes God used Thatcher to teach me were also my sweet baby boy's Initials: Thatcher Caleb, Trust Courage, T C.  I knew without a doubt that was what I wanted as my tattoo.  A physical, and permanent reminder of how God forever changed my life and who He used.  So, last Monday, my sister, brother, Eric and myself put our words into action and got our tattoos!

 Here's my tattoo... 
just replace the unmade bed with a beautiful professional background

All 4 tattoos! 
Top left: Eric's, it says "trust and take courage" in Hebrew. 
Top Right: mine
Bottom left: Robin's 
Bottom Right: Nate's, it's a face of a lion with the words "Thatcher, Caleb, Trust, Courage" hidden in it

The sweet people who came out to be apart/support us! (minus Eric who was getting his tattoo during the picture, and Robin who was taking it)

 Here's a better picture of Eric's

So, if we happen to run into each other at the gas station or grocery store and you see a little ink peaking out above my shoe, just pretend you didn't read this blog post and feel free to ask me about it.  Because I would LOVE to share with you about the amazing little baby that changed my life! 

~ Whit

Friday, November 16, 2012

Thankfully, We Trudge Along ... trudge along, trudge along

It's kind of funny that our blog title isn't "Eric, Whitney plus one on the way"  or "Life with Thatcher" or something like that.  I mean, there are plenty of blogs out there that are specifically titled about growing families even those with disabled children, which is exactly what I thought ours would become.  For some reason, when we decided it'd be easier to share our family information with all of you via blogform I pictured us hiking, on a journey, knowing from that moment on our lives as "The Paul's" would never be the same.  Of course, I didn't think at the time we'd be continuing our journey without Thatcher, just that our lives would be different than the little family fantasies we once dreamt about.  One of the many random things I thought of after Thatcher left us was "well, at least we don't have to continue the blog."  A thought that brought both sadness and relief.  Relief because neither Eric nor I attribute ourselves to be writers and it takes HOURS to pick through a single post before we feel it makes sense enough to actually share it with you (not kidding, we have numerous posts that are just sitting around on phones, computers, even saved in blogger but we never posted because after reading them, we were like "wait, what?!?! that doesn't even make sense").  Sadness because a) it means we no longer have Thatcher updates to share with you b)I've enjoyed the sense of community I've gotten from knowing people are walking alongside of us.  As soon as I had that thought, a little voice responded "Why should you be finished sharing?  Your blog is titled "The Paul Family Journey".  Is your journey over?"  Since, we find ourselves still trucking along, I guess our journey isn't over therefore we will continue to share via the blog from time to time (I say time to time, because before Thatcher came along we actually had another blog and we posted a total of 8 times over 2 years. So, I'm not going to say something like "we'll post every week" because that's just a lie). 

Anyways, one of my wonderful pastors, Kyle Dunn, ( he was my college pastor, but I continue to listen to his sermons via podcasts and videos... I'm apparently liking 'via' today... so he's still "my" pastor, plus Thatcher liked listening to his sermons in the hospital, so he'll always be special to me now!)  asked Eric and I to write a little something to be included in a sermon he was sharing regarding death.  If you want to see/hear his actual sermon, you can find it here:  (it's part 5)  He asked us to write something so it forced me to sit down and sort through my thoughts and emotions.  As much as I didn't want to, I'm glad he asked because it brought some clarity of mind.  Since, it's November and everyone is on this "thankful thought a day" kick, I thought I might share with you all some of what was shared with him.
Sooo, here you go

What I’ve learned so far along this unexpected road our family is on is how important it is to be thankful in all situations.  During Thatcher’s life and especially afterwards what I have struggled most with is a sense of betrayal.  It was such an unexpected emotion but came (still does come, and I imagine it will for a very long time) in huge waves.   As awful as it is to have to admit, I felt betrayed by God, partially because I felt I did what was asked of me.  I felt the Lord urging us to pray and cover our little baby growing in my tummy so that’s what we did, around the clock.  When we found out Thatcher had significant brain damage, and they didn’t expect him to make it through delivery, we didn’t cower in fear, we prayed.  After he was born, and the doctors said he couldn’t hear, understand, or breathe without help, we didn’t crumble, we prayed and many of you joined us.  After God pulled us out of the mire so many times with Thatcher, why would He just take him one summer Friday night?  We did what we felt God urging us to do, so then why take our child?  I felt betrayed every time I looked at friends’ pictures on facebook, of their little families, knowing God has promised me a family yet both of my babies are not on this earth.  I felt betrayed thinking we had been through enough after losing our first baby to a miscarriage and with Thatcher, so sick with seizures, wasn’t it our turn to experience healing?  What is easy to see when the explanations are written, but what was so hard to make myself believe is that my feelings of “betrayal” hold no ground.  I have forced myself to declare this over and over but only recently do I feel like I truly believe it.  An acquaintance from Baylor lost her brother-in-law suddenly, who left behind 2 kids, and my 2nd cousin and his wife awoke to find their 4 month old baby had passed away to SIDS a few weeks ago.  Tragedy happens everywhere, all the time, why did I feel it shouldn’t happen to me?  God never promised I wouldn’t go through the fire, but lucky for us He did promise He wouldn’t leave us no matter what we are going through.  God is not human, therefore does not think as we do, which I am so thankful for!  He does not have silly and fickle emotions that I struggle with every day.  My Lord is constant, He is good, He is sovereign; these are the promises I have had to declare on a daily basis.  There are some days where I don’t want to believe them, but I know those are just my emotions getting in the way. I know these things to be true, I believe them not just in my heart, but with my life!  I know His word is true.  I am the one who sways and tumbles, not Him, and therefore I have to believe what He tells me, not what I’m telling myself.  His word tells me to be thankful at ALL times, and I have found thankfulness is the best weapon I have against the feeling of betrayal.  When I feel myself begin to slip into self-pity and feel betrayed for this road we are on, I pull myself out of my thoughts and begin to list what I am thankful for (sometimes out loud, or written, or just in my head).  At first it was only: “the time we got to love on Thatcher” and I had to repeat it over and over.  Slowly I have been able to add things to the list, even things I wouldn’t imagine I would ever admit to being thankful for, such as, the way He used Thatcher’s life to bring others to Him.  As hard as it is to admit, I know had Thatcher not had so many issues, and not struggled so much with life on this side of Heaven, there would not have been as many people on their knees petitioning the Lord on our behalf, so many others finding God again because of the strength of our sweet, baby boy and his life’s testimony.  It has taken awhile, and trust me there are many days I take it back, but I am thankful God used Thatcher to bring people all over the world closer to Him.  I am thankful that even though I now struggle with feelings of betrayal, self-pity, anxiety and doubt on a daily basis, my heavenly father is patient and quietly urges me to bring these things to Him.   These feelings that I wake up with that could easily throw me into a downward spiral, when I bring them to my Lord and Savior, He casts them out and instead covers me in His peace, and for that I am incredibly thankful.  I am most thankful that I know without a doubt my baby boy is exactly where He wants to be, will never know what pain is ever again, and one day I will get to join him again!!  God showed me through His word that thankfulness would essentially be “my lifeline” during this part of our journey.  Thankfulness has allowed me to cling to Him, to His Word and therefore it has allowed me to hope in a time when I am scared to death.  See, there is nothing scarier than waking up, realizing your life is completely turned upside down but you are left to deal with the pieces.  Yes, losing our sweet baby boy was the most terrifying thing we have ever gone through, and every experience since Thatcher left us has been and will continue to be bittersweet because he’s not here with us.  Life is a daily struggle, but thankfulness has allowed us to pick up the pieces of daily life.  So when you go though a fire, as everyone will, whether it be health related, monetary related, or something else, find something to be thankful for.   Trust that God is constant and He will reveal things and people to be thankful for to help get you through each day.

PS, I cranked this post out in about 30 minutes and I'm a little rusty with blogging so I apologize if it's full of grammatical and syntactical errors.  

Tuesday, June 26, 2012

Thatcher Caleb Memorial Pt. II ... (6/26)

We just wanted to say thank you to everyone who was able to attend Thatcher's memorial service, everyone who wrote on a card how Thatcher had impacted their lives, everyone who has donated to the Thatcher Caleb Memorial, and everyone who has prayed for Thatcher and continues to pray for us.  We appreciate it more than you know, and more than our words can express.  Below is the slideshow that was played during the service.  (it's about 10 minutes long)

We have found encouragement in the words that were written on the scrap book paper, here are a few of the many that blessed our hearts:

"Thatcher changed the way I pray... All glory to our loving, sweet, faithful Jesus"
"It's so hard to find the right words to express the impact your son, Thatcher Caleb, has had on me and my family.  Even through I never had the privilege to meet your precious angel, he has changed the way I think, pray and praise our lord!  During the past 3 months I have found that I pray harder and turn to God much more quickly than before.  How it it that an infant, an angel of God, has had such a perfect impact?  It is because God is perfect and that is what I saw in baby Thatcher... perfection"
"God used His servant, Thatcher, in so many incredible ways.
    - to unite a community in prayer and compassion
    - to encourage my girls to use their gifts to bless others
    - to soften our hearts for the 'least of these'
    - to fight diligently for the things of the Lord
    - to urge and mommy and daddy to seize every moment
    - to hope in the Lord always
    - to loosen our grip of earthly things, when the Lord calls us home" 
"(from a 6 yr. old)  I think Thatcher is sweet.  I prayed for him a lot.  I love him."
"Thatcher has showed me how precious life truly is.  No matter how many days we are here on this human earth, we are capable of impacting millions.  We can move mountains.  He brought believers in Christ closer to God, and he has brought non-believers to their knees..."

Believe us, the list goes on and on, and don't get us wrong, this is not about what Thatcher did, this is about what God was able to do through our precious son.  As the first one here says (and so many others) all glory to our God.

As parents, however, we have certainly found encouragement and hope in your notes as we can tangibly see the impact that God used Thatcher to make on this world.  We'd love to hear from those who were not able to be there, it is truly incredible to see how God was able to use Thatcher's life to bring glory to God.  We would love to hear specific stories of when God used Thatcher's life in your life.  To be able to see exactly how God moved in a situation, or how God orchestrated a situation in which Thatcher's life and his story became a jumping point of talking about God's grace, or God's goodness, that's what we would love to hear about, that's what we as a church need to be observant of.  We need to seek God's hand in everything, we need to seek His face, and attribute to Him the praise He deserves for what He is doing among us and in our lives.

With that said, we wanted to let everyone know that we are working on the Thatcher Caleb Memorial, we are trying to understand all the in's and out's that it entails in terms of paperwork and documentation and all that jazz, but more than that we are seeking God's will in terms of what our mission and goal will be, and how we go about achieving that.  Please be patient with us as we seek God's will for the Thatcher Caleb Memorial, and please pray for us that we would be good stewards, and that we would be wise, and that we would honor God.  And thank you so much to everyone who has donated!

Sunday, June 10, 2012

Thatcher's Memorial Service

We will be holding a memorial service in honor of Thatcher Caleb Paul:

Wednesday, June 13th
11:00 am
Crossroads Baptist Church
5000 College Park Drive - The Woodlands, TX 77384

This service is open to all who wish to celebrate Thatcher's life with us.  Please do not feel the need to wear black.  Yes, we are beyond saddened and hurting that our baby boy is no longer in our arms, but we are choosing to celebrate the 2 months and 29 days we got to spend with Thatcher, for each and every one of those days was a miracle.  We are also celebrating that our prayers have been answered, of course not in the way we would have chosen, BUT our sweet baby is forever healed, no more pain will he feel... ever again.  In lieu of flowers, donations can be made to the Thatcher Caleb Memorial.   Thank you all again for your prayers, love, encouragement, and support.

The service will be followed by a small private graveside service.

(The Thatcher Caleb Memorial is in the process of being developed into a charity, but as we are in the early stages it is not a fully tax deductible organization, but simply an account set up in his name.  Once this process is completed, and the foundation is approved, the money will be used in Thatcher Caleb's name to continue to bring God glory by helping people in similar situations)

Saturday, June 9, 2012

Our hope... (6/9)

Some of you may know, others may not.  Thatcher made the long ambulance ride home with us last Thursday (a little over a week ago now).  We spent 8 beautiful days together as a family in our home, and last night at 9:12 pm Thatcher Caleb went to his real home.  Jesus is holding him now, with his older brother or sister.  He has finally gotten to meet Caleb, the man he was named after and who we read to him about every night.  We know that he is singing God's praises loud, and is in no more pain.  He will never have another seizure, and never struggle to breathe ever again.  Our sweet baby boy is home with his Father, and is being held and loved better than we ever could here.  We are so thankful for the time that we got to spend with him, and we are so thankful that we got to spend the last week here at home with him.  Thank you everyone for your prayers and support.  There will be a memorial service to celebrate Thatcher's life some time this week, we will post more information as we figure it out.  Thank you all for your love and encouragement but as we are still incredibly overwhelmed we'd like to limit visitors to just our families.

Father, thank you for blessing us with a child as amazing as Thatcher, and though we don't get it, and we're mad and angry, and sad and hurt and we don't understand how this is for our good or for your glory, we still trust you.  Our hope is still in You, and we will still praise you, for the 2 months and 29 days that we got to spend with Your child and servant.  God, please be gentle with us, please give us comfort that surpasses understanding, please hold Thatcher tight and let him know that we love him so much, and we miss him more than life itself.  Please kiss him for us, please squeeze his hand, please brush his hair and put him in some really great heavenly robes, and he really likes physical therapy, though he doesn't need it anymore and You already knew that.  God please be near, and hold us too... we need you, we miss him, we want to be close to him, we want to worry about alarms going off, we want to worry that he is breathing, we want him here to care for him, we want him here to love on him, we want him here to sing over, and pray over, and read to...

What's a mommy to do? ... (6/9)

     When a girl finds out she's going to be a mommy her world begins to change.  Some changes happen in an instant, some happen slowly over time.  When I found out you were in my tummy my love for you come in an instant and my presence changed too.  People were left wondering why there was a new twinkle in my eye, and a new bounce to my step, as if I was carrying around a wonderful secret.  I was, you! Slowly, they began to tell what was different.  My body began to change.  You changed my tummy, my hips, the size of my feet and fingers, even the size of my nose!  But other changes occurred as well.  You became more important than me in an instant so I changed the way I ate, moved, even the way I slept.  Celebrity gossip, sitcoms, and the news no longer mattered, but rather the the latest findings on immunizations, consumer reports on car seats, and how to learn your cries became my choice of late night entertainment.  When I found out you were sick, God showed me what the term "momma bear" really means, and how it's okay to say no to the world's mentality of convenience and selfishness, and yes to fighting for life no matter how it looks, to speaking for you no matter who or what I was up against because you needed me to, you depended on me to.  The night you were born my love for you exploded in an instant.  Over the next few months I learned you.  I learned I could be so in tune with another being I knew what was wrong by a single grunt.  I knew something had happened by the way my heart fluttered and tummy ached when I wasn't even in the same room as you.  You taught me that simply watching you or making sure you were you were handled with care, your meds were on time, you were fed at an angle, and not touched for at least 20 minutes afterwards, you weren't positioned in a way you disliked, not too much noise was surrounding you, and you were not ignored when you showed you needed help were more important than food, showering, dressing even sleeping.  My need to do things for you came in an instant.  The process of learning the best thing I could do is pray took a long time and no other baby could have made me pray as passionately or desperately or allowed me to feel God's peace the way you did.  My love for you has grown and changed who I am. 
     A baby changes a girl into a mommy some times quickly, some times slowly, some ways gracefully, some ways it's rough.  Baby boy, you have changed me to my very core ... but now you are gone and what's a mommy to do?  You took 12 months to teach me how to be a mommy but then you left me in an instant.  What's a mommy to do?  I still carry around a secret, a different secret now, the precious memory of you.  My body will be forever changed, no longer the youthful tightness, rather the markings of endurance only a mommy experiences.  But a mommy body without a baby in her arms feels so wrong.  What's a mommy to do?  You changed the way I slept, ate and moved but now you are gone.  I have all the time to sleep, there's no reason to stop and think about what I eat, and coffee is no longer something for me to dream about.  But my body requires less sleep, and doesn't like coffee or junk food now.  What's a mommy to do?  Now that you're gone no one is going to ask me how long breastmilk can sit out, or what's the best way to soothe an overstimulated baby.  Now I have this wealth of knowledge I can't use.  What's a mommy to do?  The need for this new strength you gave me to fight for you left with you.  A momma bear spirit with no baby cub manifests itself as a cranky, old grizzly.  That's not the way I want to come across, it's just that you're gone now and I don't know what to do with this passion and left over fierceness.  What's a mommy to do?  I have this constant ache in my tummy and flutter in my heart, but now you're gone and I have no one to check on.  What's a mommy to do?  For three months, I spent every waking hour by your side making sure you were okay.  Now you're gone and the hours painfully inch by.  What's a mommy to do?  You taught me the importance of quiet and stillness but without your "accessories" going off, it's too quiet.  When people get loud I have this need to tell them to quiet down but you're not here for them to be queit for.  What's a mommy to do?  You became the center of my world.  You became the forefront of my every action, thought, intention.  You changed me, I am no longer just a girl.  You made me a mommy in every definition of the word, but now you are gone and I am left forever changed.  A childless mother, it just feels awkward and so wrong.  I can never go back to who I was and I am so thankful to you for that  You have forever changed me, my baby boy, but now you have left me . . . 
What's a mommy to do?

Saturday, May 26, 2012

Pomp and Circumstance... (5/26)

First, we would like to acknowledge the fact that it has been way to long since we have updated, and we are very sorry for that, and we thank all of you who have continued to pray for Thatcher and his healing and have prayed for us and our family, we really appreciate it.  The encouragement that we have continued to receive from all of you has come at the perfect time more than once.  On days where we felt defeated and beaten up we would receive a picture of a daughter's prayer request for healing and just remind us of the faith we are to have in our God.  Or we would receive a text message or a facebook message that was exactly the scripture we needed to hear, or exactly the encouragement we needed that day, and always reminding us that we are not alone in this.  So thank you all for allowing God to use you to encourage us on our journey.

Today we find ourselves in circumstances that we never thought we would be in, we never thought we'd be here years ago, and we never thought we would be here a week ago.  Our circumstances seem to change daily, today we are looking at Thatcher and he is resting peacefully on his bed, struggling to breathe here and there, but responding well when we shift his position or stimulate him to breathe again.  Last night we found ourselves terrified every time he seized, because there was a good chance that his entire body would go rigid, every muscle flexed and tensed and his airway would clamp down.  He would turn blue and not respond to any amount of stimulation and he would need to be bagged to be brought out of the episode.  That happened 7 times in a 24 hour period.  A couple days prior we were watching helplessly as Thatcher had over 70 seizures in a 12 hour period that would cause him to stop breathing, and we couldn't do anything until the seizures were over and then we could help him breathe.  Prior to that we were praying to have a tube removed.  Prior to that we were praying for reflux to stop, prior to that we were praying for a safe delivery.  Our prayers have changed with each circumstance we find ourselves in, and that seems fitting, but we have to acknowledge that our God never changes.  Thank you, God that you never change.  Unfortunately, with the ever shifting circumstances we find ourselves thinking about the future, wondering what it's going to look like for Thatcher, for our family, when will we be going home, how will we be going home, and with these questions came fear and uncertainty.  The future is not ours to hold, it is in God's hands.  We are here, now, we live in this moment, the furthest our interaction with the future goes is deciding to let God handle it, to follow where He leads.  Fear and uncertainty are not from God, the peace that transcends understanding does not include fear and uncertainty, these feelings are a lie that have shaken our confidence in God's will, and in what the future holds.  Our confidence is not in the idea that Thatcher will be completely healed because God is able to do so, our confidence is not in our desire or our wish, or even our prayers.  Our confidence is that God is in control, and that God never changes.  This is the same God that causes all things to work for the good of those who love Him.  This is the same God who is victorious over death and temptation.  This is the same God who created the heavens and the earth.  This is the same God that every good and perfect gift is from.  God is good and that will never change.

God help us to be thankful for each moment, for the mercies of each new day, help us to rejoice and be glad for today and not worry about tomorrow because tomorrow is in your hands, help us to be thankful for each breath, help us to rely on You for each breath.  Lord, thank you for where we find ourselves today because You have brought us exactly here, and You will not leave or forsake us, You will lead us to Your glory and to our good.  Help us to trust you, and help our unbelief.  When Thatcher seizes, or he stops breathing, let us rely on you, do not let us become fearful for You are in control.  God, we humbly ask for Thatcher's healing.  That you would cause the seizures to cease, and that you would allow him to breathe with ease, that You would simply hold him and raise him up.  We proclaim Your praise, Your goodness, Your faithfulness, and Your love for us, God thank You for who You are.  We love You, Lord, we thank you, and we praise you.  Would you be lifted high, and Your name praised throughout the earth.  Father, above all, would Your will be done on earth as it is in heaven.

Friday, May 11, 2012

Our 2 Month Birthday... (5/11)

Well, Thatcher turned 2 months yesterday, and he had a really good birthday, atleast in the end.  First of all, thank you all for praying, God answers prayer.  We have seen that time and time again on this journey, and it's pretty rediculous for us to ever think otherwise, or that He is not in control, or that He doesn't hear us given where we've come from and been through.  Thatcher got out of surgery on Monday, and we were told everything went swimmingly.  There were no complications, no issues, he handled anesthesia well, very straight forward.  Well, come friday we are still on the ventilator and his belly is leaking stomach contents around the g-tube.  By friday afternoon he was gagging constantly due to his ventilator tube, and his gagging had caused the leaking to turn into more of a consistent dripping.  The site grew very red and irritated, until finally the dripping turned into more of a pouring of stomach fluid.  Thus irritating his skin more, causing him to squirm, causing the tube in his throat to move slightly, causing irritation in his throat (reminding him a tube was there), causing him to gag and start the whole process over again.  It was a terrible cycle to watch, and made even worse by the fact that we couldn't really do anything to step in and help so we just had to watch and pray.  Well, Thatcher realized that that was all he could do to...
"God, please let them take this tube out... I really don't like it, and I know you can help.  You helped before, and You can do it again.  Amen."
Anyways, he threw praying into the mix and when he was calm in between these cycles he would pray.  So what can you do as parents but join him?  So we prayed, we prayed that the doctors would take the tube out, that he would stop gagging once it was removed, that his stomach would stop leaking and would heal quickly.  We prayed for strong breathing, we prayed for healing, and we prayed for God's will to be done.  Around 10 or so, a member of the surgery team came by to look at the leakage and decided that he should be taken off of feeds and his stomach vented to relieve presure and hopefully ease the leakage.  He even considered taking him off of feeds and putting him on an IV (well, he would have had to have the IV in his head, and that's the only place we can hold him to calm him down from his seizures, so we prayed that wouldn't happen).  It did help with his gagging and the leakage to stop the feeds and vent his stomach and then, last night around 11:30 Thatcher was finally taken off of the vent!  He took a second to realize what the change meant for him, that he had to breathe on his own, and he desatted twice right away, but since then he has been doing great with very sporadic yet manageable desats.  He has restarted his feeds and his G-tube looks much better.  God has answered our prayers, and He is absolutely in control.  Join us in praising the Father for his goodness!

Speaking of goodness, some of yall have been asking about our friends we asked yall to pray for.  Well, the last we heard is that the surgery was a huge success.  That Addie started producing urine while she was still in the operating room, that she was off of the vent after 1 day when they expected her to be on for 4 days, and momma is doing well too, dealing with some pain and nausea, but she is in good spirits and praising God for where they are in their journey.  Thank you all for praying with us for them.

Again, we proclaim it, we believe it, God answers prayer.  Prayer is powerful and effective.

Father, thank you for where we are today.  Two months in, Lord and you have been with us every step of the way.  Help us to remember where we've come from, what obstacles and mountains you've already carried us through, we don't want to take your mercies for granted, Lord.  Thank you.  Thank you for the answered prayers, thank you for the "little" miracles, thank you for the reminders that you are with us and you are for us, that you are with Thatcher and holding his right hand.  Thank you that we are back on nasal canula, thank you that his G-Tube seems to be working and he seems less irritated, thank you for answering our prayers.  God we pray that you would stay present, we need your presence, we desire your presence, thank you for your peace that your presence provides, thank you for the confidence we have in You Lord, that you will never leave nor forsake us.  You are good.  You are so good.  You hear us! You provide for us!  You are here for us!  God would you be glorified through Thatcher, through us, through our journey.  Be lifted high in all the earth.  Lord, we lift Thatcher up to You, we ask for healing, complete healing.  Lord would you remove the hindrance in his brain and allow it to grow and develop, would you cast out the seizures that torment him, allow his windpipe to strengthen and grow, and help his stomach to handle eating with ease, Lord.  We trust you, God.  We trust that you are healing him, we know that you are able, and we believe that you will and that you are, thank you.  Help us to rest in your will, and in your presence, knowing that it is good and perfect, knowing that you will hold us up, we can have full confidence in that truth.  God be praised.  To you be all the glory and honor and praise, to you who is able to do abundantly more than we can ask or imagine, Lord.  We are asking to be amazed... and You never fail to do so.  Thank you for who you are, thank you for what you are doing.  We love you, we praise you, and we trust you.  It is in the powerful name of Jesus that we pray.

Tuesday, May 8, 2012

G Tube Quick Update...(5/7)

Thank you all for your prayers.  God is good, and has brought Thatcher through the surgery successfully.  We are resting now, and will begin to ween him off the ventilator tomorrow most likely, and will probably start to get his feeds going.  We will post more about our adventures in the OR at a later time, but for now, please focus your attention and your thoughts, your hearts and minds on God, and ask Him for his mercy, his provision, grace, lovingkindness, wisdom, guidance, healing, and abundant blessing over the Graham family.  Stephanie and Addie will be undergoing major surgery tomorrow morning in which Addie will be getting a new kidney from momma.  We have seen prayer move mountains in our journey, and I know that this family has seen the power of prayer first hand as well.  Prayer is a powerful tool as we approach the God of salvation, the God of creation, and the God of our hope, joy, peace and comfort.  Please pray for this entire family (Steph, Al, Addie, Max, and their extended families as well, as this is a huge step in their journey)  Many of you may know them and their story already, but some of you may not, but these are friends of ours who have supported us and prayed for us and with us, and we want to lift them to the Father just as they have for us.  Please join us in praying for them.

Sunday, May 6, 2012


From now until 10:30 am tomorrow when thatcher is supposed to be out of surgery we are asking you, our friends and brothers and sisters in Christ Jesus out Lord and Savior, to join us in a time of prayer and fasting. We are wanting to storm the gates of Heaven beseeching God for His presence and His healing hand during surgery. You see, this procedure (g tube with fundofication) is very common, but Thatcher is not. Due to his severe brain atrophy, he really struggles with the ability to calm his body down.  It took him 7 hours for his vital signs to calm down after getting a blood draw, and today was the first day his heart rate was down after his X-ray on Monday... 6 days later! It terrifies me to think of how he is going to respond to an actual surgery. Also, he is already on an amount of phenibarbital that suppresses his respiratory drive, but is needed to semi-control his seizures. Due to surgery being such a stressful event he will have an elevated amount of seizures to pull through as well as plenty of anesthesia and pain meds that knock out any remainder of a respiratory drive he might have and will have to breathe off a ventilator again. But we couldn't say no to something simply out of fear of how he might respond when it has the potential of vastly improving his quality of life. Please join us over the next 24 hours as we humbly fall on our faces before the Great I Am and ask for His protection for Thatcher's physical body but also for his fragile mind. For Him to allow his magnificent strength to pulse through Thatcher during the surgery and the recovery period. Pray He rains down His peace that surpasses understanding over and into Thatcher so he can simply rest and feel his Heavenly Father's arms wrapped around him. Protection, strength, and peace; that is what we are humbly coming to our Abba asking for through prayer and fasting. Would you, the body of Christ, consider joining us?

G-Tube it is... (5/5)

We will be going forward with the operation on Monday first thing in the morning.  Thatcher will be getting a button g-tube and a fundoplication.  Outside of any emergency surgeries that our surgeon may have to go to, this should all begin at 7:30 for Thatcher.  The surgery itself should then begin around 8 or so, and last about an hour and a half, and we should be back in our pod by 10am.  Please pray with us that God would be glorified, that Thatcher would be provided with strength and comfort through all of the pre-ops tomorrow, and the surgery, and the recovery process.  Please lift Thatcher up to our Father for healing and protection.  Lift up the surgeons, anesthesiologists, transport nurses, and everyone involved in his care through out this process for wisdom and compassion.  Thank you everyone for your continued prayer and support.  Now to Him who is able...

Thursday, May 3, 2012

G Tube?... (5/2)

We've reached a crossroads of sorts.  We had a meeting with a surgeon today about a possible G-Tube and Fundo surgery.  The G-tube is a tube that would be inserted in Thatcher's stomach directly into his stomach.  This would replace his feeding tube that goes in his mouth, down his esophagus and into his stomach.  The Fundo part of the surgery is to help his reflux which we've seen, and has been confirmed through tests.  The Fundo is basically a string that ties around his esophagus at the stomach to basically stop the reflux from happening.  The surgeon came in talking about having the surgery this friday and had papers ready to sign and everything... at this point we are not ready to commit to that, and we seem to be like a wave tossed back and forth by the wind because we are able to convince ourselves either way of whether to do the surgery or not.  On the one hand we have seen a correlation between his reflux and his blue spells, he typically has more spells while he is eating.  The tests confirmed that he refluxes almost immediately when feeding, and when he was not eating before the bronch procedure he did not have a single episode.  On the other hand, the surgery poses huge risks, how much will this really help him?  His issue of his airway will still remain which is really the more severe issue in terms of his blue spells.  We are doing our best to seek the Lord's will to ensure that we remian in step with Him and we act according to His will for Thatcher, but we need discernment and wisdom as this is a huge decision for Thatcher.  This surgery would require for Thatcher to be intubated again, and would require even more anesthetics and pain meds than the Bronch procedure.  It is a huge concern of how he will handle coming out of the more invasive, painful procudure.  How he will handle being intubated again (this is a HUGE concern), and how he will handle the anethesia.  He recovers from things MUCH more slowly than the typical infant so the fear is that he may not regain his respiratory drive.  Please lift Thatcher up in prayer for continued healing, and for God to be glorified in and through Thatcher's life.  Also, please pray for discernment and wisdom, and a peace about any decision in this regard, confidence that we are acting within the Lord's will.  Please pray that God would be an ever present pillar of smoke or pillar of fire so that we can know exactly where to step next, a visible direction of where to go.  Thank you all for praying with us on this journey.  To God be the glory.

Saturday, April 28, 2012

Bronchoscopy Update...(4/28)

Sorry for the delay in update after Thatcher’s bronchoscopy.  We updated facebook with a quick blurb.. but forgot about our nonfacebook friends here in blogland, sorry!  It’s been a rough couple of days, not necessarily physically but spiritually.  We’ll get to that, let’s go back and talk about Thatcher’s procedure on Wednesday.

We were waiting outside the surgery area when the doors opened to the anastheiologist and transport nurse wheeling Thatcher in his transport box by.  We quickly ran in and they said “okay, he’s done, let’s go.  What’d the dr. say?” To which we replied “we have yet to speak to the dr.”  so the anastheiologist ran to get the dr. and the transport nurse said she was going to take Thatcher upstairs and we could meet her up there.  We are so glad we got to see him before we spoke with the doctors.  We got to see that he was breathing on his own, albeit with some violent seizure activity. That way we could focus on what the doctors were saying and not worrying about his outcome, BUT since it was clear they didn’t do anything invasive it meant what we were fearing, tracheomalacia.  The doctors rushed out, apparently it was a crazy ENT surgery day, and spurted out some information.  We have to admit, the attending ENT speaks in broken English and is quite difficult to understand when he is attempting to explain about areas of medicine/anatomy that parents are not too familiar with.  He quickly stated that three things were found: his tongue and something about falling back on his airway, his laryngomalacia which is mild, and Thatcher has moderiate to severe tracheomalacia.  The back of his trach collapses up to the front therefore blocking any air from getting through.  They claimed they saw multiple “central” apnec episodes (Thathcer stopped breathing for an unknown reason meaning his brain simply told him to stop breathing).  He didn’t recommended any sort of surgery, what he recommended was CPAP, a machine that provides air pressure to be forced down his airway to help keep it open by a nose piece with prongs that insert into the nose to create a seal.  It is kept in place by head gear.  He said as most babies grow the cartilige around the trach ossifies therefore the trach is not as floppy, he thinks this might be the case for Thathcer.  I asked him considering Thatcher’s brain atrophy is a main contributor to his low tone, or floppiness, does he really believe Thatcher will be a part of the group that grows out of it.  He responded that he cannot attest to the neurological side, but most grow out of it, so yes, he believes Thathcer will grow out of it.  This was not the news we were praying for nor wanted to hear at all.  The rest of the day was spent trying to get Thatcher to calm down.  He was seizing pretty violently which we expected considering the stress from getting pulled off his vapotherm (nasal cannula), the transport to and from surgery and not to mention a traumatic procedure.

Before the bronchoscopy we were told ENT was going to take pictures and videos of Thatcher’s airway, form a plan then come and explain what is going on/what they are going to do with the visual support.  Well, by the end of the day that never happened so we requested to meet with them on Thursday with their pictures so we could understand what is really going on.  The ENT resident showed up on Thursday with 2 pictures… one which shows Thatcher’s trach open looking down into the bronchial tubes, and the other shows it completely closed.  So it turns out Thatcher didn’t do as well during the procedure as we thought.  The ENT resident explained that they would get the probe down into the tracheal area, get in a good spot to take pictures then Thatcher would arch his back and stop breathing.  They would then have to pull out and the antestialologist would have to bag him to bring his oxygenation level back up, and this cycle happened 5 or 6 times til finally the attending ENT gave up.  These were the “central” episodes he was talking about on Wednesday, which we know was Thatcher seizing (the same type of seizures he was having the rest of Wednesday; he would twitch for a while, he would throw his head back then the rest of his body would arch and go rigid) not some random unknown message his brain was telling his body to stop breathing.  Anyways, he explained Thatcher’s obstruction was three-fold. 

  1. Tracheomalacia; His entire trach is floppy, barely any cartilage so it sits like a cylinder, supposed to sit open like a circle, and the back of the trach contracts up to the front which stops Thatcher from being able to gasp when he is trying to come back from any apnic episodes and causes stridors when his head is in the wrong spot (which is pretty much anything other than midline).  There is a cartilage graph they can do, but not for Thatcher because it’s his entire trach.  Because tracheomalacia or floppy trachs is something most grow out of, they don’t recommend a tracheostomy. 
  2. Laryngomalacia; his  is the shape of the greek letter, omega, which causes a partial obstuction allowing less air to flow through during inhalation resulting in labored breathing and stridors.  They could go in and take off tiny portions of the epiglottis skin to open the airway back up.  His is considered mild, therefore they don’t recommend doing anything for it. 
  3. His tongue sometimes falls back and occludes his airway.  Usually, they would set the jaw a little bit more forward but because it is not constant they do not recommend doing anything about it. His recommendation was not to let Thathcer lay on his back….

So for the past two days we’ve REALLY been struggling. It was the first time we both have really let our anger, confusion and frustration take over.  This is a paraphrase/conglomeration of our many prayers (or rants) from Thursday:

“What are you doing?!?! We come praising you in obedience every day and where has it led us? To yet another dead end! I prayed you would provide peace if we were to allow Tahtcher to go through an invasive procedure which I received on Tuesday, but what came of that procedure, NOTHING!! We were told CPAP and not laying Thatcher on his back are our options.  Thathcer can’t stand CPAP, it makes him miserable.  The mask makes his face swell, the nose piece hurts his nose, the pressure pushes air into his tummy forcing him to have more reflux and in turn have more apnec episodes.  It usually takes up to 2 years for babies to grow out of tracheomalacia.  Is it really your will for him to be miserable for 2 years, never going outside, a prisioner of his own home, going as far as the tubes allow him to go?  Only being able to go anywhere by ambulance, which means home and doctors appointments.  If he can’t be on his back that means he’ll never get to sit in his bouncer, swing, boppy, carseat, sling, baby bjorn. He’ll never be able to be held like a normal baby!  We can’t even hold him laying on us for very long before he begins to stridor.  Is this really why you set Thatcher aside?!?!? Simply to rot in a bed on his side because he can’t lay on his back, or at an angle because his tongue falls back.  He doesn’t have the muscle tone to sit, his body just collapses in on itself.  Yes, you are using him to bring you glory.  No, I cannot deny you have had your hand on his life since before conception.  Why does it feel like you have forsaken him now?!?! ENT was our last option.  Why did you let him go through that procedure just for them to do nothing?!?  Is it really your will for Thatcher to struggle for breath every hour of every day?!?  You can heal him, DO IT!!! You can give him breath, you can allow him to breath with ease, you can strengthen his neck.  I know you are sovereign and all mighty, please do something!!! You have the ability to use Thathcer in any situation to bring you glory.  Use him in another way, not through pain and struggle to cling onto life.  Lord, Thathcer is your precious servant, he’s just a helpless baby!! Be merciful, heal him. You have placed in my arms and heart to love him and I can’t watch him be in pain anymore.  He can’t breathe, his seizures are growing more evident again… you can fix all of it.  Please Lord, do it!! You are making it evident you are not going to heal him through medicine, we hit a dead end with every turn.  So do it in a supernatural way, use the power of the Holy Spirit!!! I don’t understand what you are doing and it makes me so angry!! Why are you allowing your precious child to struggle for life every hour… why would you do that to your child?!? He is just a baby and we are tired.  Please be gentle with us.  You say you will not allow us to endure more than we can handle… we have met our max.  Please don’t allow any more to pass through your fingers.  We are so tired, and he is hurting, Please God be gentle with us.  We have no where else to run to, no one else to look to so show us what you would have us do, but please, oh God, be gentle!”

Well, this morning I was mindlessly flipping through facebook, a friend’s scrpiture stopped me in my tracks. 

"Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you." Matthew 7:7

This was my message I sent to her:

Thank you for posting scripture on Facebook. God has used them to speak to me in the past but today's was imperative for this journey we're on. Thank you for being tender to God's daily callings to you. I have REALLY been struggling the past 2 days with where God is leading us and why he is allowing Thatcher to lay in pain and struggle every day while we hit dead end after dead end with the drs. On Tuesday, after ENT came out and said "we found 3 moderate to severe obstructions but none of them are severe enough for us to do anything about" I was done. I was (still am) angry, discouraged, ready to go turn on a tv and hide under the covers in my bed. Scripture just made me angrier, people's encouragements made me want to scream. All the while, I knew that even though I’m angry and it doesn't make sense, I need to be obedient. That was the constant whisper I felt for the past 2 days, but I wouldn't get past my stubbornness to listen. Last night, I told God I needed help I can't get past my stubbornness on my own, I'm too tired. I prayed that He would be gentle on us while continuing to prune us for His glory.  While I was allowing myself to mindlessly flip through Facebook newsfeed I stopped on your status update 'Keep on asking and it will be given you; keep on seeking and you will find; keep on knocking [reverently] and [the door] will be opened to you.' (Matthew 7:7 AMP). He has not forsaken us, He is not simply leaving Thatcher to rot in a bed. We can't see what He has for us but He does command us to keep seeking him and keep asking and He will answer us, it will be given to us, we WILL find HIM. Thank you for allowing yourself to be used by God to give me a good push on this journey He has all three of us on. I'll never be able to repay you for being obedient and stopping me from going down a dangerous path that not only destroys my future but the future of my family and my child! Thank you!!

Thank you, Lord, for who you are and what you are doing.  Thank you for the journey we are on.  Thank you for the truth that the end of this journey will be for Your glory and our good.  You have answered our prayers and met our needs every day, yet we say “why haven’t you answered our ‘big prayers’?”, and we begin to doubt that you ever will.  We forget what you’ve already done, and where you have brought us from.  That is a lie, and we proclaim that, even now, that is a lie that we will not fall victim to anymore.  Protect us from this lie, God.  We have no reason to believe that you don’t hear us, and no reason to believe that you won’t answer, in fact, Lord, by your very nature, you hear us, and you hurt with us.  You will answer our prayers, even our big ones.  It will be in your time, and it will be according to your will, but we know that your will is good and perfect, and we know that your ways are higher and your thoughts are higher and we trust, Lord, that you are working for Your glory and our good, and that is reason for praise.  Thank you, Lord that we know where this journey ends, and where it ends is so good.  That is the hope we hold on to.  Father, we are tired, this journey has been hard, and we need you now.  Please hasten your answer, please be quick to respond, and God, please be gentle with us as you teach us and mold us and shape our family.  As we always do, God, we lift Thatcher up to you, we ask for healing.  Complete healing, Father.  Let the pain from the reflux subside, calm his stomach down.  Open and strengthen his windpipe, allow him to breathe with ease.  Be his breath of life.  Heal his brain, allow it to communicate with the rest of his body effectively, allow there to be no confusion, allow there to be no seizures.  Cast out the seizures that so often torment him.  Lord, by the power of your Holy Spirit that lives within us, grant us the power to be your healing hands.  Use us.  We trust you, Father, Thatcher is your child, and we thank you for the blessing of our son.  We know that you are in control, and we know that you are able.  Lord, heal him.  Be glorified through Thatcher, be lifted high and praised across the world, in all the nations.  Thank you for using Thatcher to be glorified, Thank you for answering our prayers.  Grant us patience, be gentle.  We love you, Lord.

Tuesday, April 24, 2012

Bronchoscopy... (4/24)

Bronchoscopy (Bronco- scope - ee) - this is how it is improperly pronounced, in case you were wondering how not to say a word, we are happy to be of service.

Tomorrow morning we will be undergoing our first operation.  A bronchoscopy, basically they will put Thatcher under, open up his mouth real wide and stick a rigid camera down his throat.  They will take video and pictures of whatever it is that is going on in his throat and we will go from there.  They are doing his pre-op baths tonight which apparently use some special anti-microbal soap, and he will be dressed in the hospitals finest linens.  Then at 7am we will be set up with the transport team and heading to the OR.  Once there, ENT (Ear, nose, throat) will do another Flex Scope before he is put under just to get another look at his airway while he is still alert and awake.  Then the anesthesia folks will do their job and begin to administer their drugs and make sure that he stays sedated correctly and also give him some pain meds during the procedure.  The ENT doctors will use some sort of contraption that will keep his airway open.  They will put a rigid scope (which also provides some breathing support) down his throat and will push beyond his vocal folds to see his entire airway to make sure we have a full picture of his airway and that they can accurately diagnose the issue at hand.  Beyond that, we don't know what to expect.  They have the approval to go ahead and do any minor operations while they have him sedated if they see something that can be worked on, but if they believe a trach is neccessary, then they will pull out and consult with us before we go any further.  The concerns that we have and have been brought up are that this is the first time that he will have anesthesia administered, with his neurological state (now we sound like the doctors), will he be able to pull himself out of the anesthesia efficiently, effectively, correctly, whatever term you want to use so that there is no damage to his brain or other organs.  Beyond this the concern that he will maintain his drive to breath following anesthesia, or if he becomes intubated again, that his drive will return.  Any sort of physical damage from the procedure meaning damage to his airway from jamming a rigid camera down a sensitive and swollen airway, scrapes, further swelling, scar tissue, things of that nature are certainly a concern.  This is his first true operation, and getting a prick and bathtime are incredibly tramatic for him, so just that he won't go into shock, and that his body won't go into overdrive or shutdown.

While these are several of the concerns, and legitimate apparently, according to the doctors, we believe that the journey to this point has been orchestrated by God.  Every detail of every day, God is in control, and God has orchestrated.  Looking back to the first week of life, we were told he would never breathe off a ventilator, Thatcher and God had a different plan.  Following that we've been told that he has no organized brain activity, but we watch him work to position his head so that he can breath better, he still has incredible prophetic and comedic timing with his grunts and noises, and he is responsive, with his grasps, his kicks, ect.  We've been discouraged from pursuing treatment of his airway because it is all central.  Well, we had a sleep study that states otherwise, and we have several weeks of watching our baby struggle that tell us otherwise as well as a preliminary scope that tell us otherwise.  God orchestrated us having to have a second sleep study to show the numbers that it did, God orchestrated every moment up to this point where the doctors are now pushing to pursue treatment of his airway.  God is in control, and we will trust Him, and we will praise Him for how far we have come already, and for the great things that He has done in and through Thatcher.  We have a peace about where we stand today, and we have a peace about the bronchoscopy tomorrow, we will rely on the truth that our God is in control, and that our God is for Thatcher.  One of my favorite lines from a song that's been in my head today is, "You are God, and you don't miss a thing".  So true, you know Thatcher inside and out, and you are God, you don't miss a thing, you orchestrated every detail thus far, why would we ever second guess that you won't continue to do so.  We love you, Lord, that you are the same yesterday, today, and forever.  You don't miss a thing.

Join us in praying for Thatcher as he undergoes his first operation, that God would guide the doctors hands, that what is intended to be seen is found and seen, that Thatcher handles the stress of the operation by the strength of God, and that God moves, and shows up in a big way tomorrow morning.  Continue to pray for healing, for the miraculous and the spectacular, that what occurs and unfolds can only be attributed to the glory of our God.  Our great God.  Our victorious healer.  Our Lord and Savior.  To Him be the glory, the honor, the praise.

Sunday, April 22, 2012

Quick Update... (4/21)

So we have good news and bad news.  We'll get the bad news out of the way first.  There has been no further developments with the sleep study results... yet.  The ENT doctors have been made aware and we expect to see them Monday or Tuesday.  They will help determine the course of action that we take to help treat Thatcher's obstruction and also what exactly that obstruction is.  Not sure why I said that was bad news, it's really not bad news at all, and the bright side of the bad news is that Dr. C (our new doctor for the time being) did not chalk up the sleep study results to simply Neuro issues, huge answered prayer!!  What we were able to gather from rounds was that she actually wanted to take a look at the airway issue apart from the neuro issues at least initially, which is so amazing as it has been kind of the routine for a doctor to come in make an assessment and once they see his neurological issues, that assessment gets tossed and it gets blamed on his brain.  Well, we are so thrilled that she wants to take this approach.  So I guess that was some pretty good bad news, huh?

So here is the good news, today Thatcher started working out.  He did his first push up today while mom was holding him.  He has been moving his head around here and there trying to position it better to breath, or when he is irritated, or randomly really.  But tonight, he just wanted to show off how strong he was, so he just began by lifting his head up, and then he pushed up with his forearms and hands and almost his entire torso was lifted up and he was looking mom right in the face!  He held this for a couple of seconds. It was so amazing!  Thank you, God for providing strength to your child!  And showing us, yet again, that you are in control, and that you are working in Thatcher.

Outside of this, we started taking some steroids today (there is no corellation to the pushups... we don't think...) to help get the swelling in his throat down a little bit more quickly.  His throat was irritated even more than usual after we switched out his OG tube yesterday (his feeding tube, it had to be done...)  He has only been on the steroids for about 10 hours now, and there has already been a decrease in the number of striders he is experiencing, and his breathing seems to be easier now.  Again, thank you God for this grace.

Thank you everyone for praying with us for healing for Thatcher, and for praying with us throughout our journey so far.  We are so encouraged by the prayers, and support, and honestly we are most encouraged by what God allows us to see day in and day out, the little changes, the subtle developments in Thatcher's abilities, or even his personality, his faces, and timing of noises, his reactions, or how God is teaching us, and drawing us nearer to Him.  Praise God for who He is, and for what He is doing.  Our God is victorious.  Thank you, Lord!  To You be all the praise, and all the honor, and all the glory forever. -amen.

Friday, April 20, 2012

Sleep Study Results (4/19)

Our faithful God is continuing to teach us more about His goodness everyday and we will absolutely share with you all what we're learning in a post later this week.  For now, we are coming to ask you, our brothers and sisters in Christ, to once again cover Thatcher in prayer ....  and in exchange we'll give you a quick update :)

Thatcher had a sleep study on Monday night to help provide a clearer picture as to how many of his stridors and apnea episodes are due to an actual obstruction in his airway and how many are due to his neurological state.  From different articles and comments from the doctors, we were not convinced the sleep study would show much.  First, Thatcher has stridors when he is putting forth effort to inhale a big breath, and the sleep study records what he is doing at rest, not when he is actively breathing deeply (well, trying to).  Then, you have the doctors, who were willing to go forth with the sleep study because ENT suggested it, but seemed to be unconvinced there is really anything other than neurological or a neurological induced obstruction going on.  Regardless of what shows up there is most likely nothing that they would "treat".  Well, the test came and went, and Thatcher had probably one the best nights he's ever had.  This would be wonderful, except during a sleep study, you kind of want episodes and stridors to be recorded!  The test began with him on "room air" (breathing like you and me, with absolutely no help) and when he began to show he needed it they put him back on nasal cannula and upped his flow.... except he never did!  Like a big boy, Thatcher breathed on room air all night!! (like I said, one of the best nights he's had).  I think he only had a total of 3 episodes.  Just to give you something to go by, he's had about 3 episodes since I started this blog entry!  We were a little nervous that nothing would come from the study but prayed from the beginning that Thatcher and this test belong to God and whatever He wanted to show up/happen during the test, He would allow it to come into fruition.  Well, we got word on Wednesday that the results were inconclusive due to his EEG not showing a real picture of when Thatcher was awake vs. asleep, and because his CO2 meter and saturations (measured oxygen in the body) didn't correlate.  They felt it was important to REDO the 9 pm-5 am, all night, sleep study!  Had we not prayed that whatever God wanted to show up in the test/results to show up, we probably would have been quite frustrated.  But we declared God's sovereignty and knew there was a bigger reason as to why the test needed to be redone.  Soooo Wednesday night, sweet baby Thatcher Caleb had to do ANOTHER sleep study!! We got the paper results back this afternoon! (Yes,  a fast turn around, no our doctor did not come to talk about them, they will be discussed tomorrow morning during rounds) The results showed Thatcher had 11 sleep apnea episodes, 2 were due to "central" (neuro motor), 8 WERE DUE TO OBSTRUCTION, and 1 was due to a mix of both the elusive obstruction and central, alongside of 59 hypopnea episodes (lengths of shallow breathing) as well as documented stridor.  The EEG portion came back abnormal.  The final impressions were: a) abnormal EEG, indicating dysmaturity b) moderately severe obstructive sleep apnea.  While we are blown away to see what we suspected all along, Thatcher's airway does not work properly therefore he can't inhale properly, we are cautious to read into what the results show.  Obviously his neurological issues play a part in his ability to breathe or they wouldn't have found it necessary to document findings on it.  Also, we have a brand new doctor starting tomorrow, and it always seems when a doctor first starts on Thatcher's case he or she is hardcore "it's all neurological" and it takes a good week to convince them that there might be something else going on as well.  If we allowed ourselves to think ahead of the moment, we would be incredibly anxious about tomorrow and the results discussion as it will essentially begin to form what path we are about to take, whether it be some sort of treatment for the obstruction, or we go home with hospice on a temporary fix like nasal cannula.  It really depends on what the doctors are willing to do for Thatcher, if they see a bleak prognosis or a life worth fighting for.  BUT, luckily for us, we aren't simply relying on physicans, rather the Great Physican.  God has proven time after time He has His hand on Thatcher's life and He's not going to stop any time soon.  Before we even have the meeting, we declare victory in our Lord!!  We are praising Him for the victories seen, and the victories that are yet to come.  We trust our Heavenly Father and believe his sovereign will will prevail!

Please join us as we praise God and celebrate victory before it has happened.  If you have never taken that leap of faith to praise God before He moves, do it!! How freeing and exhilarating it is to act on belief and not what we already know/experienced.  Lord, you are good and we know your will will prevail, and we praise you for it!  Also, please join us as we pray for the doctors, nurses, techs, anyone who comes into contact with Thatcher tomorrow.  Pray for Thatcher's new doctor, that God will use her to fulfill His will with the test results.  Pray they will find compassion as they look at our son and see a precious life not just a prognosis.  Pray God begins to massage their hearts and uses them to fulfill His will for Thatcher, rather than they be obstacles that Satan uses to trip us along our journey. Pray they see something supernatural in the works when they look at our son, pray they find Christ.

Tuesday, April 17, 2012

The subtleties of Satan and the Victory of our God (4/17)

This week has been uneventful for the most part, or rather just more of the same, blue spell, stimulate Thatcher to breath and watch him struggle for breath, and then relax back into his shallow quick breathing that allows him to get what he needs, at least for a time.  There have been really no test results, no changes in medicine, no real breakthroughs in terms of what to do next.  What we thought was going to be a hectic week of quick decisions and change turned into a very long week, that was hectic in its own way, but extremely slow at the same time.  The days and nights at this point have sort of melted into one, and honestly who really knows what day of the week it is anymore, it has become our practice to take it breath by breath, the hours seem to drag on, but pass by in a blur when we try to look back at them and remember what happened when.  All of this to say that this has been a difficult week in ways that we have not experienced before.

Satan has been on the attack in very subtle ways, planting questions where there had been none before, creeping doubts into our minds, even bringing tension among us, not allowing us to see eye to eye, essentially disturbing the peace that we have been experiencing, disrupting and getting in the way of our experiencing God.  Slowly, he seemed to creep in.  Honestly, it's hard to say when it began, but over the course of the week the questions and doubts just kept coming.  For whatever reason we began questioning what exactly the promise is that I'm even holding on to.  This question even stems from the story that we read him every night.  We read Thatcher the story of Caleb and the other 11 spies spying out the land of Canaan, and at the beginning of the story (numbers 13 and 14), the promise is clearly stated, that God has already promised the land of Canaan to the Isrealites, and we always point out, there's the promise baby boy.  And somehow the question popped into our heads and haven't been able to shake it.  What promise are you holding on to?  What promise do you have for the future?  The Isrealites had to face strong nations and mountianous issues and Caleb had faith and he held onto the promise of God already laid before him, but what promise do we have before us?  This really began to eat away at us as we let it fester and grow until it eroded our peace and our joy.  Our attitudes became selfish and we began to question if there was something more that we could be doing, or even something that we had done in the past to cause Thatcher to have to endure this.  Our prayers became selfish, and forced.  We began to pray that God would do exactly what we wanted.  There is a passage in Isaiah 58 that speaks about fasting, and the first several verses are basically how not to fast.  It talks about it being a ritual, sort of a going through the motions type of activity, and in verse 3 it says "Behold, on the day of your fast you find your desire".  For whatever reason, that hit home, and helped it click that we were beginning to go through the motions, that we were at that point praying for things that we wanted and not relying on what God has in store for us and our family.  This past weekend, after that verse awakened me a little bit, God has put it on our hearts that we need to "follow Him fully" just as Caleb did.  God used the very same story to bring us back to Him that Satan used to lead us astray.  At the end of the story, God says that Caleb will get to go into the land of Canaan and his descendants will take possession of it as he has had a different spirit and has "followed Him fully".  That part, following fully, really weighed heavy on us.  So our prayer began to be that God would reveal what that looks like for us, how are we not following fully the will of God, how are we not seeking his face?  And it was a gentle nudge of the Holy Spirit as we were pointed to the story in Mark 9 of the boy being set free from from a demon that caused him to seize and his father proclaiming, "I do believe, help my unbelief!".  "Help my unbelief", that became our prayer.  We still am doubting, we are still questioning, and this prayer turned it from asking those questions and dwelling on those doubts to saying "Lord, help my unbelief!"  I need your help, because I do believe You are able, and I do believe you are in control, but I still question and doubt at times... Help my unbelief, God!  Then the Holy Spirit began saying: trust Me.  The question that you asked before, about what promise are you holding onto?  Well, you are holding on to the promise that I am the same yesterday, today, and forever.  I am the Lord your God, and I go before you now, steady your heart and mind, take heart, and trust in my lovingkindness, trust in my strength, trust in my plan.  I am holding Thatcher... you've seen this, and you know this... do not doubt any more.  Give me control.  I love you and am here for you.  And this became more than a nudge by the end of the weekend and it hit me of what I am still holding onto.  Our prayers have been for the outcome that we want.  We have refused to acknowledge the possibility of God answering our prayers of healing by something other than complete healing here on earth.  We have refused to acknowledge it, because we don't think that we will be able to praise Him if that is His answer.  If that is the future that is before us, we're not sure how to handle that... the good news is, God is the same yesterday, today and tomorrow.  He will be with us, so we will praise God, we will praise Him for the miracles that have already happened in Thatcher's life, we will praise Him for the way that He has used Thatcher to bring glory to the kingdom of God.  We will praise Him, because regardless of our circumstances, we have to, God is worthy to be praised.  Always.  Every second of every day.  We proclaim that today, our God is victorious over Satan, over all forces of evil, over death, over sickness, over every obstacle our God is victorious.  Our God is powerful, his voice can strip forests bare, his presence shakes the earth, He causes mountains to quake, and the seas to roar, He can dry up oceans, and bring about floods.  Our God is our shelter and our shield, our stronghold and refuge.  Our God loves us, and hears our prayers.  Our God is everlasting, and is ever victorious.

Lord, we thank you for who you are.  We could never understand all that you are, but we want to spend a lifetime trying to figure it out, and God, we want to spend a lifetime teaching Thatcher everything we know about who you are.  We want to share stories with Him of how you have moved in my life, in our lives, in our church, in our city, and in our world today.  We want to read him the story of Caleb so many times that we have it memorized forward and backward.  We want to read your word with him, we want to sing your praises with him.  But we don't want you to simply provide us what we ask.  We don't want to pray and expect what we ask to be done.  We want to pray, believing that you are able to provide our desires, but trusting that you will provide for our good, and for your glory.  We desire your will be done.  We need your will to be done.  God we trust you, we love you, and we praise you.  Be glorified, and be lifted high.

Now, onto what "updates" we have from the week.  It seems his phenibarb has leveled out, at least for the time being.  No, it hasn't stopped Thatcher from seizing, but the neurology team wanted his level between 50-60, and for this past week it has set right around 54.  We, of course, are still praying for God to cast out the seizures, but are satisfied that the doctors are no longer chasing a level and his respiratory level seems to not be suppressed.  Praise the Lord that, at least for the time being, we are not chasing an invisible magic number.  A couple of tests that were sent out before, the hypothyroidism and 2 out of the 3 genetics, came back clear.  Our doctor agreed to consult with ENT (ear, nose, and throat team) to have them come do a flex video endoscope.  The scope showed that Thatcher has laryngomalacia, (the opening of his larynx (epiglottis) is floppy so when he tries to take a breath it collapses on itself).  It also showed that his larynx is extremely swollen, so much so he could not see Thatcher's vocal folds at all (they are housed in the larynx, or voice box).  It turns out our sweet baby boy has pretty bad reflux, mostly 'silent' meaning you don't often see spit up but it's constantly going up and down the back of his throat causing extreme irritation to his already fragile throat.  One huge praise is that the ENT said Thatcher's muscle tone looked fairly normal.  Considering his neurological issues, the ENT expected to see the muscle tone of someone who had a stroke, but his looked fine.  This is HUGE because people coming in trying to guess what could be causing his stridors have assumed because he has neurological issues he just has bad muscle tone and there is nothing to be done for that. Thatcher was put on prevacid and we were told we should see a difference in a couple of weeks.  The ENT team thinks Thatcher's stridors are 3-fold: caused by a)his neurological issues b)swollen larynx due to reflux c)laryngomalacia so they suggested a "sleep study" to see what percentage each thing is responsible for.  So that's where we are now... sitting at his bedside as he completes his sleep study.  We're not quite sure what this is really going to show because our sentiments have remained the same: if there is any sort of obstruction that is causing Thatcher to struggle to breathe, get rid of it!  He is making it quite clear he wants to breathe, and is fighting and struggling to do so.  We can't currently take him home in his current state, him struggling to initiate big breaths leading to blue spells which leads to seizrures which leads to a bigger struggle to breathe... what a nasty cycle and one that breaks mom and dad's hearts!!  I can't sit and watch him struggle when we can help him with his fight to breathe.  So that's where we sit now; waiting to see what is going to come of this sleep study so we can come up with a plan that will hopefully get us closer to taking our sweet baby boy home.  Oh, and right as we feel we're beginning to connect with our current neonatologist, a new one will start tomorrow for 3 days then we will get yet another one on Friday... efficient, right?!?!  Our prayer is that our doctors will see Thatcher as a life, and not just as a medical picture.  That they will have compassion on our sweet baby boy and want to do something to help him.  ..... Hmmm, I guess there was quite a bit to update you on, whoops! Sorry!

ps: the sleep study has gone great so far... Thank you, Lord!

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.