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.

Thursday, April 5, 2012

God has to be working...(4/5)

God has to be working because satan is trying to pull out all his tricks.  Our "neuro meeting" that was supposed to happen at 6 am, well the neuro team didn't show up til8:50 am.  Right off the bat I was told my son doesn't experience ANY organized brain activity, ONLY seizures.  He has no quality of life, just pure devastation. I should think about what would I want, would I want to live a life full of seizures or get to die? If God wanted to perform
a miracle He'd do it regardless of what we were providing, medication or oxygen wise (which I agree with, but I also believe in God's timing and His way, not do it like this and ... Now) ... Mind you, we requested to meet with team  to ask questions about his phenibarb levels and EEGs. So once I got to ask my questions, the answers consisted of "well there's no organized brain activity so it really isn't necessary" after they left, thatcher has struggled off and on with "striders" ( a gasp, wheezing sound) that indicates some sort of airway issue and he has had 3 or so apnec episodes (stops breathing, turns blue).  Like I said, the evil one has definitely been on the prowl. 

Nonetheless, we are trying nasal cannula.  They want to see how he does.  We have no idea what God is doing or how He is going about doing it. We do know that our creator is in control, that He is here and He is working!! We are trusting Him! We will not be made to feel guilty for choosing life for our son!! God has used Thatcher  to touch people's lives in ways I could have never imagined! How can you not believe He is working when you look at that?!? Thousands of people are being joined together in prayer, praises, petitions to our heavenly father because of one special little dude... Where is the devastation in that?!? 

Abba, daddy, we may not know what you are doing or understand why, but it is evident Your hand is resting on sweet Thatcher Caleb's life.  Lord, please continue to find compassion on your tiny servant. Reach in and open his airway, cast out the seizures, generate brain tissue.  Lord, heal him from the inside out. Use your child to bring glory to your name.  Allow your presence to be so thick in this place that it is hard to move! We love you, Lord. We trust you. In your sweet son, Jesus's name we pray. Amen! 

God is Able

Here we sit in the NICU, quite possibly the most depressing place I can imagine, yet Thatcher is laying on mom and laughing at jokes that we crack with the nurse.  He was breathing off of his CPAP machine for several minutes straight just because he knocked it of his nose and we wanted to see what he could do.  God has shown up every day with some mercy, some sign, some event, or word, or song, or something that just reminds us that He is with us, and He is in control.  We have said that over and over.  Yet, out of this awful roller-coaster, some of the most joyful moments spring forth, and contrasted to the oppression that this place exudes they are so bright and made even more joyful by the very fact that they were able to break through the darkness.  Thank you, Lord that you have made yourself known in this place to us.

I had a realization today, one that seems to me to be exceptionally important on our journey, and as we progress toward healing.

Psalm 29 speaks about simply the voice of the Lord, and how powerful his voice is.  How majestic, and simply with his voice he can break cedars, can shake the wilderness, can strip forests bare.  Everything in His temple says "Glory!", so we say Glory to God in the highest!  We see again and again in scripture, Jesus healing by simply speaking a word.

Psalm 29:
Ascribe to the Lord, O sons of the mighty,
Ascribe to the Lord glory and strength.
Ascribe to the Lord the glory to to His name;
Worship the Lord in holy array.
The voice of the Lord is upon the waters;
The God of glory thunders,
The Lord is over many waters.
The voice of the Lord is majestic.
The voice of the Lord breaks the cedars;
Yes, the Lord breaks in pieces the cedars of Lebanon.
He makes Lebanon skip like a calf,
And Sirion like a young wild ox.
The voice of the Lord hews out flames of fire.
The voice of the Lord shakes the wilderness;
The Lord shakes the wilderness of Kadesh.
The voice of the Lord makes the deer to calve
And strips the forests bare;
And in His temple everything says, "Glory!"
The Lord sat as King at the flood;
Yes, the Lord sits as King forever.
The Lord will give strength to His people;
The Lord will bless His people with peace.

Nahum 1:2-7 speaks about God and His power.  The clouds are dust beneath His feet, He can dry up the seas, Mountains quake and hills dissolve.  By his presence, the earth is upheaved.  His wrath is poured out like fire.  Surely God is a God to be feared, yet God is good.  In His power and might, He knows those who take refuge in Him.  We see Jesus calm the storms and the waves even as he walks on the water.  This is the God who created all, and has dominion over all.

Nahum 1:2-7
A jealous and avenging God is the Lord;
The Lord is avenging and wrathful.
The Lord takes vengeance on His adversaries,
And He reserves wrath for His enemies.
The Lord is slow to anger and great in power,
And the Lord will by no means leave the guilty unpunished.
In whirlwind and storm is His way,
And clouds are the dust beneath His feet.
He rebukes the sea and makes it dry;
He dries up all the rivers.
Bashan and Carmel wither;
The blossoms of Lebanon wither.
Mountains quake because of Him
And the hills dissolve;
Indeed the earth is upheaved by His presence,
The world and all the inhabitants in it.
Who can stand before His indignation?
Who can endure the burning of His anger?
His wrath is poured out like fire
And the rocks are broken up by Him.
The Lord is good,
A stronghold in the day of trouble,
And He knows those who take refuge in Him.

So if this is just a glimpse of the God we serve, (not to mention this is the God of creation), why then do I find myself asking, "What more do I need to do, God?  Why are we still waiting for you to heal Thatcher?  Do I need to somehow glorify you more? pray harder? longer? Praise you louder?  Be more courageous?"  I've come to realize that these questions are a trick, there is nothing I can do to earn your grace, or this miracle that I'm asking for, nothing I can do to earn your mercy.  This is something I've known, and heard and been taught, but this principle has become very real, and I feel like God is screaming in my ear to listen.  By their very definition and nature grace, miracles, mercy are in and of themselves unearned, and unable to be earned.  If something were earned it becomes a reward or something like it, and then the focus becomes on me, and the glory and praise would be mine.  I can do nothing to help Thatcher, my prayer has nothing to do with my abilities, therefore, God must be glorified.  God must be praised.  This is, to my knowledge, and in my understanding biblical, at this time all we can do is wait on God.  Anything else takes away from God's glory.  If we worry, we are proving our lack of trust in God's control, thus depriving the One who is worthy of glory from gaining exactly what He deserves.  If we try to earn the miracle we are asking for, then we are simply shifting the focus to us, and therefore we are the ones who should be thanked and praised, because it would be because of us that the miracle occurred.  Impossible, we can not earn a response, we can not earn God's grace.  All we can do is rest in who the Lord is, rest in the power of his voice, in the very nature of who He is and wait patiently for Him.  All we can do is be still, and know that He is God, and that He will be exalted throughout the earth, and correct me if I'm wrong, but the NICU is certainly still within the earth, God will be exalted even here.  We can not fear, we can not worry, and we must stand firm on who God is, and take refuge in Him.

Rest in the Lord and wait patiently for Him
- Psalm 37:7
Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.
- Psalm 46:10
Do not be afraid.  Stand firm and you will see the deliverance the Lord will bring you today...The Lord will fight for you; you need only to be still.
- Exodus 14:13-14
I am the Lord, the God of all mankind.  Is anything too hard for Me?
- Jeremiah 32:27

Plain and simple.  Our trust is in the Lord, it must be.  We will proclaim the power of the Lord, and glorify Him.  We will seek the Lord. Thank you, God, for who you are.

Wednesday, April 4, 2012

Not the day we expected... (4/4)

We prayed that God's will would be clear today, and that He would orchestrate the events of today.  Well, apparently it was not His will to have Thatcher try nasal cannula for a second time today, that day appears to be tomorrow at this point.  In addition, it was not His will that we speak with neurology, that will be happening at 6am tomorrow morning.  This could feel like a very frustrating set back, and to be honest this afternoon had some ups and downs, but if we truly believe what we pray then there is a reason why neither one of those things happened today, and we will trust that it will be glorifying to God.  Had we started nasal cannula yesterday morning (Monday morning) which was the original plan over the weekend, Thatcher would have had fail number 2 put on his record, due to his phenobarb level dropping too low again.  In hind sight, we can see why God did not allow him to begin nasal cannula on Monday, so we are trusting in Him as to why the expected events of today did not happen.

As we mentioned just above, Thatcher's phenobarb levels dropped again, they were at a 44, which the doctor was OK with initially, but just before he was to get put onto nasal cannula, Thatcher showed us that this level was not high enough to control his seizures.  He seized pretty consistently for a couple of hours, which as odd as it may seem, we believe was orchestrated by God.  Here was Whit's post on facebook:
Soo even though thatchers phenibarb level dropped down to 44 and he is having more clinical (noticeable to the eye) seizures the dr. has decided to try thatcher on nasal cannula again because she doesn't think the seizures are as severe as last wk and won't interfere with his breathing (even though she wasn't here last wk and didn't see the seizures) as you can imagine I am quite anxious, just imagining our nightmare of last week happening again. Please pray for God's protection for our sweet baby and that God orchestrates the events of today so that they are all in His will and not our own (because I'm ready to climb into that crib, cower over my child and bark at the doctors to leave him alone)
As Whit walked back into the room, Thatcher was seizing and had just gone apnic, he had one of his blue spells.  Because of this, we were able to speak to the doctor about postponing the nasal cannula transition.  The rest of the afternoon Thatcher rested, the seizures are still present, and his maintenance dose has been increased, but Thatcher has been much more relaxed and at peace this afternoon and evening.  Because the seizures are still present, we may have to get a loading dose tonight, but regardless the Dr. wants to try nasal cannula tomorrow.  Honestly, we don't know what to think, or what to expect.  They said they wanted to make sure that Thatcher had a good steady level in the 50's before they tried nasal cannula again, and we are sitting at 44 today, and don't expect it to get into the 50's before tomorrow, and we haven't had a steady level yet.  With that said, we continue to pray that God would continue to orchestrate the events of each day so that it is only by His will that each day unfolds.  It was obvious it wasn't supposed to happen today, so it didn't.  So while we can't say with any certainty that Thatcher will be trying nasal cannula tomorrow, we can say in absolute truth that God is in control, and He will continue to be.

Our prayers have not changed.  We are praying for the seizures to stop completely, and for Thatcher to have a strong open airway.  We continue to pray for absolute and complete healing. 
I am the Lord, the God of all mankind.  Is anything too hard for Me?
- Jeremiah 32:27
This is the God we serve, and we believe in.  He is able to stop seizures that medicines can't control, and to generate brain tissue where doctors say it's non-existent.  We will wait, faithfully, with hopeful anticipation to see how God continues to move.  To Him be the glory.

Overdue Update, Week 3... (4/3)

Friends, Family, Brothers and Sisters in Christ, and anyone else who has been following Thatcher's story, and our journey, we apologize for the overdue update, and unfortunately that seems to be becoming a pattern for us!  Thank you for your continued support and most importantly your prayers, lifting Thatcher up to our Heavenly Father who is able to do immeasurably more than we could ever ask or even imagine.  Thank you for praising the Lord with us, and helping to be the hands and feet of Christ as we walk this journey.  We are now a couple days beyond week 3, which in and of itself is a miracle (Thank you, Jesus, it is only by your grace that Thatcher is with us, and is making strides toward full healing and independence).  We have had quite a lot happen this past week, which bits and pieces have been posted, so here's the reader's digest version (apparently reader's digest has gotten longer these days...).

Last week Thatcher was put on CPAP for a couple of days after his self extubation, was a rockstar and then transferred over to nasal cannula.  Unfortunately, simultaneously, his seizure medications had slipped to the lowest level they had been at since he first began taking them.  His seizures came back with a vengeance and Thatcher was caught in seizures for about 48 hours straight.  He began to tire quickly, and was having trouble keeping his airway open on the nasal cannula, so after struggling for about a day, and after many "blue spells" (basically he stops breathing, and we watch as his oxygenation level drop to the teens, where he usually sits around 98 or 100, first his lips turn gray, then his whole face goes gray, and then his body, by that time his entire face becomes blue as his body is deprived of oxygen.  The worst ones cause his eyes lids to open as we watch his eyes roll back into his head.  These seem to last hours as we watch Thatcher struggle for breath, or even worse, not even attempt a breath.  They probably last anywhere from 30 seconds to 2 minutes start to finish when he finally gasps for air and "pink's" up), they put him back on CPAP.  The idea was that the pressure the CPAP creates would help him keep his air way open while we worked to get the seizures under control again.  This was a very long couple of days, and very difficult to watch Thatcher struggling and not being able to do much for him.  Since then we put another "loading dose" of his medication into his system to get him back where he needs to be and upped his maintenance dose so that his level won't slip so low so quickly.  We knew the balancing act of getting his medications right would be difficult, but this was certainly a set back that we didn't see coming, and was hard to stomach.  That gets us through Thursday of last week I believe, and since then we have prayed hard that the seizures would be controlled, and that they would be expelled from his body, that Thatcher would no longer be attacked by the seizures, and that by the very fact that our God is a victorious God, that Thatcher would be victorious through God over these seizures.  We have begun to see glimpses of Thatcher coming to life, God's mercies each day, and reminders that God is in control.  It has been a bit of a slow recovery process, as you can imagine, after 2 days of seizing, he was quite tired, and needed rest.  So for a couple of days that is exactly what he did, he rested.  On Palm Sunday, however, Thatcher and God decided to bless us by opening his eyes several times.  These were different than before, no more were his eyes lifeless and blank, but he opened one eye and looked intently and purposefully at us, each of us individually.  There was life in his eyes.  Then he would open the other and do the same thing.  God is so good!  These moments are so precious, and so incredible, words can't describe the love that pours out when that connection is made.  We've prayed that we would love Thatcher fiercely, that we would learn to love as God loves, it's moments like these when God is teaching us to love as He does, it's moments like these when God loves through us, and it is so good.  Please teach us how to consistently love this strongly, Lord.  Please love through us!  Allow us to diminish so that You can fill us up and overflow in love for Thatcher.  All of his grandparents were there also, and it was really just a very sweet time with family falling more in love with our precious blessing and miracle.  These past few days have been filled with more little glimpses like this where he will open his eyes, or he will grasp our fingers more purposefully or stronger than before, the seizures are still present, but so is God, and God is in control, and our God is victorious.  We will trust in Him.

So that catches us up, here is where we are right now.  We had our first day without a heel prick (YAY!!!) finally giving his poor precious feet a break.  We got our vision and hearing test results back, the results are that there is no response to auditory stimulus, meaning that his brain does not register any activity when there is sound, essentially saying that Thatcher is deaf and will most likely remain that way.  They did, however, find that he responded to visual stimulus in both of his eyes, so this means that he should have vision in both eyes, but how clear or how well he is able to process what he is seeing will only be determined over time.  Honestly, these test results are not conclusive to us, and they don't change anything for us.  If Thatcher is deaf, so be it, we will love him and nothing changes but the way that we communicate with him, if Thatcher is blind, so be it, we will love him and nothing changes but perhaps the way that we show that love, however, our God is bigger than these test results, and we both are unconvinced that he does not have hearing as we have witnessed him respond to sounds, whether it be someone's voice in particular, or a loud abrupt sound, he responds; and we believe that he does have vision in both eyes.  God is good, and God is in control, and our trust is in Him, not in these test results.  Our "blue spells" seem to have decreased this week as we get the medications to the intended levels and Thatcher has recovered from his several day bout with seizures.  There is probably about two or three per day on average at this point, but they seem to be getting less severe.  We have started spitting up with our feeds, and He seems to be uncomfortable throughout the entire feed, the doctors seem unsure whether this is related to seizures or if it is reflux or really if it is severe enough to warrant a whole lot of concern at the moment.  Still, whether or not they think it is important to treat or not, we hate to see Thatcher in pain and in discomfort, so it is our prayer that God would calm his stomach and allow his body to handle his feeds more efficiently and with no irritation.

Now for the big news.  Thatcher is set for take two on nasal cannula tomorrow, Wednesday. (at least that is what we were told today).  Please pray for a strong airway that can handle the pressures of breathing deeply with no additional help, please pray for a strong drive to take continuous purposeful breaths, please pray for stamina.  Pray that God would not allow the seizures to interfere with Thatcher's breathing. Pray that God would provide for Thatcher these things, and that God would literally breath life into Thatcher, that God would awaken the Holy Spirit that dwells within Thatcher to breathe for him, to move in and through Thatcher's body to awaken him, and heal him.  Please pray that God would come down and literally whisper into Thatcher's ear, "Be healed, my child".  Please pray that God's presence would heal Thatcher, that his presence would be so thick in this NICU room that He is almost tangible, and that Thatcher would touch the hem of His robe and be healed.  Please pray that God would have compassion on Thatcher, and with a thought, Thatcher would be healed.  Please pray that God would do more than we could ever ask or imagine in and through Thatcher.

Lastly, we are scheduled to be meeting with the neurology team tomorrow, we will not leave the bedside for this meeting so we can avoid another "conference", and we will discuss the whole picture of what we have seen these three weeks.  We will probably discuss treatment plans, possible prognosis and future diagnosis, and things that are negative and blunt and difficult to deal with and hear.  Our main goal of this meeting is to understand what is seizure activity, and what is Thatcher's activity that appears similar to seizures because of their jerky nature.  How can we best care for him down the road when we head home.  Please pray that God is present in this meeting, and that God would provide us strength and comfort, and wisdom of how to handle whatever it is they will bring to the table tomorrow.  How to respond wisely and in a way that glorifies God, that God would guide us to ask the right questions, and seek the right paths of treatment.  Basically that God would remain in control, in every way, through out the meeting.

Thank you all so much for praying with us, and for praising God with us.  He has provided over and over again, He has been answering prayers, and showing up every day.  God is in control, we declare this.  We trust You, Jesus; we declare this.  You are worthy of praise, we proclaim this to the nations.  Lord, would you be glorified through Thatcher.  Thatcher is your child, and he is your servant.  You have blessed us with this miracle, but, Lord, he is Yours; this too, we declare.  We thank you for Thatcher, for every breath you have blessed us with, for every moment we've been able to look into his eyes, for every grasp, and every noise, Lord, thank you.  Thank you that you have shown yourself to be in control, we ask that you would guide us through this journey, would you be an ever present guiding light, a pillar of smoke by day, and a pillar of fire by night, help us make decisions that are in step with Your will, help us speak to folks here in the hospital in such a way that You are glorified, help us to love Thatcher as you love.  Teach us, Lord, what it is to be faithful, to be like Caleb, God, change our spirits to be like that of Caleb!  We want to have a different spirit, we want to follow you fully, Lord!  Would you show your glory in this place, just as you did in the tent of meeting, would you come down and show your glory!  We want to see you like Moses did, Lord, we desire your presence!  We want more of you, God!  Continue to work in Thatcher, God.  Continue to heal, Thatcher, God.  You are able.  You are able.  We trust You.  God, you conquered death!  You are victorious!  You are a loving God who sacrificed more than we could imagine, You endured death in perfection, You are perfection!  And we thank You that through Jesus we can even come before You with this request!  Teach us, Lord, how You love.  Teach us, Lord, awaken our spirits, our hearts and our minds to listen to Your voice, to seek You.  Teach us, Lord.  Teach us to pray, teach us to love, teach us to seek you, teach us how to worship, how to praise, how to pray with such conviction, with such power, through such pain that we sweat drops of blood, teach us to pray like Jesus did.  God, we love you, and we trust you... heal Thatcher, please, Father.  Heal your child and your son.  You are able, and we trust You.  Be glorified, God.  We lift Thacher up, so that through his life, You may be glorified.  We praise you, Lord.