Our first week (3/17)

Happy one week birthday baby boy!  I don't think we really know where to start, this week has been such an emotional roller-coaster and extremely tiring physically.  The strain and stress of spending this much time in the hospital is honestly the most tiring experience I can imagine, and we are only one week in.  Here's a recap of where we began and where we are in terms of all the medical stuff.

Where we began.  Thatcher was born much larger than we expected (a wonderful surprise, and answered prayer), he needed a little medical help to get his body going in terms of breathing and everything.  The labor process was very stressful for him, and he needed that help to get back on track.  He was put on a ventilator at very low settings to help him maintain the oxygen levels needed and he was given some fluids through an IV to get him the nutrition he needed immediately.  When we were first able to meet him and spend some time with him, it was apparent that he had a very stiff body (now diagnosed as contractures, basically he won't be able to extend his arms or legs all the way without a surgical procedure), his movements were very jerky, and he was extremely sensitive to the outside world.  Loud noises, and certainly touch would instantly elicite a response that was a little more exaggerated than you would have expected, combined with the jerky motion, it was obvious that there are motor issues.  He also had trouble relaxing it seemed, but once the initial shock or reaction wore off he would relax, sometimes it took pressure to calm him down, just placing our hands firmly on his head and feet and helping feel safe and secure would usually do the trick.  Other times however, the movements/reaction would continue, other times the movements would start randomly and be very rythmic.  Often times we would see his left hand and his eye twitch at the same time for an extended period, these are what we believe are the seizure activity that has been diagnosed at this point.  However, despite all of this, he did open and close his eyes on his own, and he was making grasping efforts and he certainly seemed alert.

Here is where we are now.  After countless tests, exams, evaluations, blood samples, and loading doses of drugs we are a week in, and we are exhausted, and that absolutely includes Thatcher.  Let's start with the breathing, as we've asked specifically for prayer in this area.  He was initially put on the ventilator at the lowest settings, and they actually wanted to try to get him off the ventilator as soon as possible, they turned it off overnight, and unfortunatly Thatcher was unable to keep up the breathing overnight, he did very well for several hours, but by the morning was requiring the support of the ventilator for most breaths.  When they put him back on the ventilator, they put him on 20 breaths per minute (a much higher rate than before), and he struggled to breath over the ventilator (breath on his own, in addition to the 20 breaths that are pumped for him).  They have slowly brought the ventilator back down, and as of today they are at 10 breaths per minute.  His breathing is again rhythmic at most times, but still appears to be shallow.  Please continue to pray for Thatcher's breathing.  Outside of the breathing, the original focus of the doctors was to get his seizures under control.  We did an MRI and an ultrasound and both confirmed what had been diagnosed previously.  That Thatcher had an excesive amount of brain atrophy (destruction estentially, missing brain tissue).  The space that this created was then filled in with fluid.  This MRI and the doctor who read it to us (Dr. K) determined that Thatcher's brain is what they would expect to see in a 26 week old baby in utero.  She also said that she does not expect for his brain to develop or grow any more, and that the state he is in, is essentially going to be the state he will continue to be in.  Needless to say, that was a tough conversation to have.  Shortly thereafter they decided to pursue (pretty aggressively) stopping the seizures.  They put Thatcher on Phenobarbital (Phenobarb, if you want to sound like a doctor).  This is a strong medication that is certainly a depressant to the entire body.  Almost immediately the progress we had seen in Thatcher disappeared.  He has only opened his eyes one time since the medication began, he stopped urinating on his own, his resting heart rate dropped, his blood pressure has become more sporadic, and he is almost entirely unresponsive.  We can't pretend to be doctors, but we don't like this medication... They have run several EEG's and upped this medication and even added a second seizure medication (Keppra), and still they are detecting seizure activity.  It is starting to seem that controlling the seizures through medication may not be an entirely plausible option.  However, we will choose to believe, and know it to be true that God can stop the seizures, that God can heal Thatcher's brain, and that is the miracle that we are praying for.  Most recently our neonatologist (Dr. L, you will be hearing more about her, I'm sure) presented a train of thought to us that is both disconcerting and encouraging for us as parents.  Her thought is this:  The body is smart, and protects it's most vital organs by directing blood and oxygen from other organs before allowing damage to the brain, heart, and lungs.  Because this damage appears to be coorelated with some event in which oxygen was cut off to Thatcher's body, she believes that there is probably more damage to other organs.  That basically the body allowed the other organs to be damaged first, and then the brain last.  This is obviously disconcerting to us because that just opened up so many doors for further complications and diagnosis, and doctors, and surgeries, and medications, and seemingly immovable mountains for Thatcher to have to overcome.  The encouraging thing about this is that Dr. L is the first doctor to take this approach and really look at the wholistic picture of what we are dealing with.  We feel that Dr. L has taken a personal interest in our little man, and seems to be invested personally in his care, and we very much appreciate that.  As much as we are terrified to learn what else is going on, we continue to hold to the truth that God is in control.

Now that you are caught up on the medical side of things, we would like to share a little bit about our journey, and what we are learning through all of this.  Something that has remained aparent through this entire journey is that God's mercies are definitely new every morning, and we are so thankful for this.  Each day has brought it's own challenges and questions, fears and anxieties, and every day God has shown himself to be in control, and shown us that He is still with us.  Whether it be a tiny reflex, or Thatcher's first poop (seriously, we were so excited about it)!  God has continued to use His word, His church, His servant Thatcher, and small "miracles" to show up and remind us that He is in control.  Every single day there has been some mercy, something that was undeniably God that we can hold onto.

Psalm 46:
God is our refuge and strength, A very present help in trouble.
Therefore we will not fear, though the earth should change
and though the mountains slip into the heart of the sea;
Though its waters roar and foam, though the mountains quake at its swelling pride.
...
Cease striving and know that I am God;
I will be exalted among the nations, I will be exalted in the earth.
The Lord of hosts is with us; The God of Jacob is our stronghold.

This has been an incredibly hard passage to follow, to not fear while our whole world has changed?  To see our child essentially lifeless, bound to a bed?  Doctor after doctor presenting mountain after mountain to overcome?  It sure feels like the mountains are slipping in the sea, and that the oceans are roaring and foaming.  Everything seems so tumultuous, where is the peace? How are we supposed to just cease striving, to stop worrying about our son?  God has brought us to a place where we have no choice but to rely on Him.  He is our hope and our joy as there is no hope or joy outside of Him, He is our strength and our refuge at this time as we have no strength left without Him, and we have nowhere to turn but toward Him.  We don't believe our prayer for healing has gone unanswered, we know that God has heard our prayers, and the prayers of His church from around the world, God is simply saying "Not Yet".  It is our job at this time to rely on God, it is our job to fiercely love Thatcher, to continue to read him the story of Caleb every night, to spend as much time with him and to encourage him, and let him hear our voices, and let him know how much we love him.  It is our job to fight for him against all odds, the good news is we have a God who is bigger than the odds, who is able to overcome any obstacle.

New rule, no sadness at Thatcher's bedside.  So, Uncle Nate brought knock, knock jokes for us.  (Stephanie also had a great one, sorry we didn't snag a picture of that!)

Skin on Skin ("Kangaroo Care").  First time to hold him like this, so amazing.

Thatcher's digs in the NICU pod

Whitney was surprised to come in from dinner to Thatcher getting a bath, she was able to help.  This was one of God's mercies.

Making his hair look good

Done making his hair look good

Enjoying some time with Daddy and Uncle Nate

Holding on tight to Mommy's finger

The army of doctors and nurses as they make their rounds.

Loving on Thatcher, trying to calm him down.

Snuggles for Mommy, more "Kangaroo Care" (this is our favorite thing to do..)

Please continue to lift Thatcher up in prayer, pray for healing, praise Him for His mercies and grace; Praise Him because He is worthy of praise.  We have several tests coming up this weekend and early next week, as we mentioned Dr. L wants to get a holistic picture of Thatcher's current state, please pray for these tests, and for our conference we will have with Dr. L on Monday.  Please pray for positive results, and pray that God would be glorified through these tests/results and in this meeting.  Please pray for the meeting on Monday, as we have come to really not like these meetings as they usually mean bad news.  We will continue to proclaim that our God is Able, He has proven that over and over again, so we say this again.  We know that God can heal Thatcher, and we are praying that He will heal Thatcher.  Now to Him be the glory forever.  Amen.