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.