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.