Noah's New Do
First of all - A HUGE thanks goes out to hair stylist Grant Brunsvold for coming down from Athens and giving our son the coolest mow hawk he has ever had! We aren’t able to wash it until tomorrow by request of the neurosurgeon. His hair hasn’t been washed since last Friday and was pretty gross. I know it sounds kind of lazy but trust me; it was easier to cut it off than to wash it and let him be known as the kid with the weirdest haircut. Today (before the haircut) we put him in the wagon and took him for a ride around the hospital to get a change of scenery and let me tell you - people still know how to stare, So naturally I knew it was time to bring in the big guns, Grant is a stylist at Salon Jolie in Huntsville Alabama. (256-533-8809 Monstershear@gmail.com www.salon-jolie.net) He is one of the best! Noah's first haircut was by Grant so naturally we wanted him to do it again. Thanks Grant - You took a horrible haircut and turned it into something cool.
Today was a great day. Noah had the tube removed from his head that drained the fluid off his brain. This morning’s CT scan showed his body working just right managing the fluid level and pressure on its own. He was also disconnected a bit more when they removed the IV from his right ankle. Tomorrow they will remove the GI tube running down his nose into his stomach. One day at a time, one step at a time we are seeing progress. Progress feels good.
Noah began physical therapy today. We worked with his right hand and his neck. He is having some trouble sitting up. They tell us it's a result of the surgery and should go away very soon. He was able to reach out and grab everything the therapist wanted him to, hold it and even put pieces into a puzzle they were working on, it takes a little longer with the right hand and he isn’t as strong as the left, but at least its working! We tried walking and he couldn’t get the right foot moving well enough to take a step. Noah is going to be a fabulous drummer one day - so let’s get praying on that foot.
We laughed a lot this evening, so much that I really began to recognize my little boy again. Let me explain that statement. Seeing him all swollen and moaning and crying all the time with tubes and bandages all over him made it hard to recognize my son. For those of you who don’t know Noah, he loves to laugh. I mean He LOVES to laugh! The cutest thing I think he does is playing jokes on us at home, like hiding. (He will open a closet door and go in and shut it to hide from me.) He likes being chased and being surprised and he loves being tickled. Not seeing him in the normal state has been very hard for me. Noah is my buddy. We play a lot together. We were told that after a brain surgery, his personality might change; He may not be the same little boy we love and know.
He sat in his bed and laughed tonight at Jessica as she played with him. I just soaked it in. I realize tonight that if we had not gone to the hospital and had him examined last Friday, that by today we would have already had his funeral and I would be wondering how to make it a day without his laughter in my life. Jesus said in Matthew 6:19-22 (NIV) 19"Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. 20But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. 21For where your treasure is, there your heart will be also.
I know that the main point of this verse is not about spending time with your family. But I see in it a truth that I have ignored. I admit that I am somewhat driven. I spend a lot of time doing a lot of things I consider important. I have close friends who for years now have said "John, You have got to slow down - You’re too busy" I am driven for success. I want it - I feel I need it. It’s a treasure to have - but a treasure here on earth only. And at what cost? In my efforts to be as good as I can at what I do I have sacrificed so much valuable time with my family. As I type this, tears come into my eyes because it has taken something as drastic as this to make me realize that success will never be more important than the quality time I have with my family. I could be the most successful man in the world, but I would trade every bit of it just to hear Noah laugh. God has used these days to rearrange my priorities.
"For where your treasure is, there your heart will be also" Again, I understand the main point Jesus is making in this passage, but he has also used this passage to reinforce my heart that my son and my wife are treasures, and that I should treat them as such. I should cherish every moment I have to chase Noah and laugh with him. I should take every opportunity I have to play with him, teach him and just be with him. I should cherish every moment I have to love my wife and spend time with her. These treasures are more valuable than any title, position, power or amount of wealth in this world;
We came close to losing our son ........ But for the grace of God. I hope from now on I will no longer loose time laughing with, loving on and living with my son and my wife. Besides living a life that honors Jesus, there is nothing more important.
Many of you who have followed this blog have contacted us telling us how this has ministered to you. We are so humbled that God would use this situation to speak to you. We are very thankful for your emails. As you can imagine, there is very little time in the day to respond to them all, but as we have time we hope to write all of you back. Your encouragement has been so valuable. Thank you for taking time out of your life to minister to us. God has used it to strengthen us when we have felt weak.
God Bless you all!!
New Room (John)
Today was not a bad day at all. Jessica and I are so glad that Noah is away from all the stress of the PICU. He has slept more than I have ever seen him sleep - and that's fine with me. From what we have been told and read, patients who have brain surgery sleep more post operation than any other surgery. As you can tell from the pictures, we are pretty happy today. Jessica got to spend time holding Noah. He and I ate a lot of chips and ice cream and watched America's funniest home videos. Hearing him laugh again is the best sound I have heard. The Neurosurgeon who saw him this morning said he was recovering remarkably well. (We all know why) They decided today was the day to see if his brain could handle crimping the tube coming out of his head. He has a drain to relieve the pressure in his head. It’s amazing how much fluid has poured out these last few days. They crimped it this morning and told us to watch if he lost consciousness or threw up. They didn’t seem worried about that at all and sure enough he had excellent blood pressure, heart rate, temperature, appetite and energy - boy does he have energy - all day. So we are expecting a good CT scan in the morning at 5:00 am. They will look at the fluid in his brain and the swelling and if everything goes well, they will take the tube out. It will be such a relief to him. He tries to touch it a lot and we really have to watch him so that he doesn't pull on it or try to pull it out.
This week has been so long. It seems we have been here for months. So many things have happened in our lives that we were agreeing today that nothing will ever be the same again. Coming home to Athens will be so great, but it will be different. We have a different outlook on life, different priorities, and even different values. Noah one day will ask us about this week. He will more than likely not remember any of it (thank God). But Jessica and I are forever changed. We have seen the hand of God move in such a way that it can never be explained away by chance. We have felt heartache like never before and experienced the peace that really passes understanding. We have wrestled with doubt - taken captive bad thoughts - spoken God's word in faith - really taken it to heart the words of Jesus "And which of you by worrying can add one cubit to his stature?" Luke 12:25 we have seen the devil work against us to distract us and try to cause us to lose our focus and our faith.
I was thinking about these things this morning. James 1:12 NIV says- "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him" There will never be a trial in our life where God is absent or unaware of our situation and our suffering. In fact - God sets the boundaries of our trial - how far it can go and how much we can handle. Jesus spoke to Peter in the book of Luke 22:31-32 31 And the Lord said, “Simon, Simon! Indeed, Satan has asked for you, that he may sift you as wheat. 32 but I have prayed for you; that your faith should not fail; and when you have returned to Me, strengthen your brethren. Do you think that was a onetime occurrence? I don’t. We all know what Peter went through and how God restored him - even used that story to restore countless others who have walked away from Him. I believe the enemy still approaches God and asks who he can sift. Sometimes He chooses us. When our name gets called, we have to believe that God sets the boundary. I know that God has allowed this to happen for a reason. Many could say He is cruel and unjust to allow a little boy to suffer. I have been tempted to meditate on this thought and many more like it. But who are we to question the will of God? Romans 9:20-22 (NKJV) but indeed, O man, who are you to reply against God? Will the thing formed say to him who formed it, “Why have you made me like this?” 21 Does not the potter have power over the clay, from the same lump to make one vessel for honor and another for dishonor?
God has his own plans for these events. God has His own reasons for this happening. We don’t have the right to ask "Why me?" what we need to ask is "What now??"
As I type this, my wife lies sick on the bed in this hospital room unable to stand up, my son lies in the same bed he has been in for over a weak, recovering from a surgery that has drastically changed his life. He is facing the threat of cancer. He has a third degree burn on his arm causing him pain & discomfort. I feel weak and stressed and am battling a hoard doubt and worry in my thoughts. I know that boundary lines have been drawn by the Father and that the enemy is right on the edge of that line. But in all this
BLESSSED BE THE NAME OF THE LORD!
God will see us through the hard times in life just as He sees us through the good times!
We have a big hurdle to overcome - the pathology report. Please pray and tell everyone you know to pray that God would give us a good report.
Thanks again to all of you prayer warriors from 5 years old to..... You know how old you are.
I have received numerous emails from people who have dedicated their lives to Christ though this experience, To God be the GLORY - Great Things He Has Done!
Thanks also to those who have followed this blog and have become family to us through this ordeal.
Thanks to the Athens News Currier for the story on Noah and to faithblessingphotography.com for providing the photo.
God bless you all!!
"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:7
Ahhhhh.....It's about 1 pm and Noah is sleeping soundly in his own room! Praise God! John and I feel as if 5 pounds of burden have been lifted from our shoulders. The lights are low, it's quiet...no screaming, no beeping...just peace.
Early this morning Noah had a CT scan, doctor gave the ok, so we're free from PICU! They removed the turban, as you can see in the picture, but he will keep his drain in for as long as it's needed. John wants to shave the other side of his head and leave a mohawk....we'll see. :) One of the neurosurgeons stopped by the PICU this morning before we moved, and really encouraged us that Noah is progressing very well...his words were "considering the situation, he's doing wonderfully." We are soooo blessed, and we're giving thanks for the "win" we've had today.
We are in room 687, but we've decided not to have any visitors today until Noah gets settled in, used to the new room, and until he understands that either Mommy or Daddy will be with him at all times. Hopefully when he wakes up we can clamp the drain, find a comfy chair and I can hold him for a while...it's been 5 days. Last night and this morning were really rough for me, as far as thoughts and what-ifs...I was remembering times when Noah had wanted me to play with him, or hold him, etc. and I had "other important things" to attend to. My arms, and my heart, ached for him. As far as "what if's" go, I've been reading some material we were given by our social worker on brain tumors - statistics, types of tumors, etc. - and this new education is doing a number on my mind. I don't think I've mentioned this before, but my father passed away when I was 6 years old from a brain tumor. Needless to say, when I hear those words I equate them with death. When I first found out about Noah, I really had to rely on the Lord to sustain me - mentally and physically. I know medical science has changed so much in 21 years, and it really is amazing how people can recover from this situation...but the enemy is using that experience in my life as a means to impart doubt. So I have a constant battle in my mind, but for seven days I have won (the God of peace will soon crush Satan under your feet, Rom 16:20)! I know that my son is beyond a statistic, because John and I have placed his life and his spirit in God's hands. The Lord is working in him, and apparently THROUGH him...He is turning what could be a bad situation into good, for HIS glory.
Thank you for your continued prayers, and we will continue to keep updating the good news!
Saturday evening (John)
Sometimes you have to laugh at your situation. Noah's head is full of stitches and he has a tube coming out of the top draining fluid off his brain. He doesn’t need to touch any of it so they have this net around his head. Jess and I laughed because he looks so funny with it on. I thought about that guy from Fat Albert. It's not the same color, but if I can figure out a way to cut holes for his eyes - it might just be the funniest picture of him yet. He was eating Pringles when I took this and he was pretty serious looking while doing it. That just his style - He's tough and there is no denying it!
Well we are in our room tonight free from alarms, buzzers, phones and constant light and talking. Noah has been in a room (the PICU) with 24 hour light for 6 days straight. He also heard constant talking and noise so needless to say he is completely exhausted. He has slept so well this afternoon and we are so thankful.
We have made it through some pretty big hurdles this last week. We are breathing a sigh of relief right now because of the blessing of being with him in a room 24 hours a day and the peace that comes with it. It is a great room with a good place to sleep for one of us and a very nice bathroom.
The big hurdle comes next. Noah had a tumor - which could mean cancer. His pathology report comes back this week.
We are asking for every person possible to pray and ask everyone they know to pray for a negative report of cancer. We do not know what day the report will come but until then - Everyone pray!
He has recovered so well which is only because of His heavenly father. We believe his recovery will continue and be a testament to all who hear that the God we serve is indeed the one true God and that He still works miracles!
Friday - Post 1 (John)
Jessica and I both agree that today was the worst day in this entire journey - it also was the hardest day of our life. The PICU is very strict on visiting hours. They don’t let parents in until 8:30 am. We rested pretty well Wednesday night and had planned to sleep a little later, eat a good breakfast and be in the right spirit and frame of mind when it came time for us to see Noah. Our phone rang at 6:30 am. Noah's nurse said to me "he is awake and needs you here now - are you in the hospital?" I was in the bed still - very sleepy. Jessica and I jumped up and got ready as quickly as we could and ran out the door. When we arrived to the unit they let us in 1 1/2 hours early just so we could help calm Noah down. And there began our eleven hour battle. Noah was crying, screaming, pulling on tubes and bandages, hitting and biting - but worst of all his back was arched and we could see it in his eyes - he was in pain. We did everything we knew to calm him down. Had Elmo going, gave him juice, went through so many socks (his safety blanket is a sock) moved him around, sung to him even tried ice cream. They gave him morphine, Benadryl and adavan (?) to calm him down - in infant doses of course - and it didn’t do much good. We were told by his nurse that his sodium level was low so they had to do something drastic to get it back to normal, force his mouth open and inject salt water into his mouth and force him to swallow it. In those moments you have to grit your teeth and decide this is what's best for his life - just do it. He was a danger to the IV in the artery in his wrist on the right hand. As we removed it we had to pin him down and hold pressure to the artery to stop it from bleeding. This pressure hurt his hand. Just when we thought it wouldn’t bleed, his nurse lifted the bandage to check and blood shot out of him like a water gun all over his face and pillow and us. I got weak at the sight of it (didn’t know I was a baby at the sight of blood) and Jessica grabbed me and got me out of the way to hold him down. His nurse finally got it stopped and taped it up. This upset Noah so much he began biting his fingers and hands and trying to hit the spot they removed the skull. So we had to hold him down. They had to put a tube down his nose to go inside his stomach so they could get the salt water inside him. We held him down for that as well. They had to start a new IV in his foot - three times they tried but his veins weren’t cooperating. We had to hold him down for that as well. All of this only fueled his frustration. And to top it off - he has been on steroids for six days so his anger was very amplified. For medical professionals, this may not seem like big deals - they see it all the time. For Jessica and I, not only was it the first time, but it was our only son.
Jessica and I felt so helpless. He couldn’t tell us what was hurting. We couldn’t fix it and every time they came to do something needed for his recovery it involved discomfort and pain. He looked at us all day saying "Momma - Dada" and we could only stand by and watch him squirm in pain. After eleven hours - the staff told us we had to leave because the unit was closing to all parents. I didn’t understand how Noah would do any better without us there. Walking away from him was the hardest thing I have ever done. I pleaded my case to the head nurse asking if I had rights to stay by his side as a parent but they were solid on their policy. So off we went as his nurse attended to him by the bed side.
It felt as if all of the life had been sucked out of us. We had done everything we knew to make him feel comfort and figure out his pain and take it away and we felt as if we lost the fight and let him down. There is no more horrible feeling I have ever experienced - to know your child is in pain and you can’t fix it.
I must admit that around 4:00 this afternoon I began to have weak faith. I was saying over and over to God "please stop his pain, please give him peace” I couldn’t see any change and I began to feel that anger start to rise in me again. "God, why aren’t you helping here? Why are you letting this happen? What’s the deal?" Jessica and I both admitted to each other in that moment that we were struggling in our faith. It is so awesome to be yoked together with someone who loves and follows Jesus. She helps me so much and is truly my help mate - the better half. Accountability means honesty with each other...and we were able to get our feelings out before we meditated on the wrong thoughts. In life - how you look at situations determines how you react to the situation. We had to get Gods viewpoint back in our eyes. That’s why God had us leave the PICU.
We had some friends visit at just the right time, to give us the encouragement that we needed at just the right time. And God refreshed us at just the right time. When 8 o’clock rolled around we had different hearts - ones that were no longer questioning, but accepting and trusting again. We still had to go back and hold Noah and assist the Nurses as they worked on him. We are so blessed by knowing his nurses are divinely appointed. Don’t believe me?? You should see them with him. We left him tonight sound asleep on peace with a nurse to care for his every need. We can rest!
I thought about Paul and Silas in the jail in Acts today. (Acts 16) They had no real assurance of rescue. In fact Paul knew persecution very well and I figure he knew it was coming for them in the way of torture or death. As they were chained to the wall they did something so odd. They didn’t question or get angry or give up - they worshiped. Jessica and I realize that we had a much different heart than that in the midst of today’s events. It is so easy to praise God when everything is good and you have good news (like yesterday) but if you’re not careful, when the worst day of your life rolls around tomorrow - you'll chose not to worship and choose to question - which only weakens your faith. And faith is what God is looking for when He wants to work miracles - like busting down a prison and setting people free - or calming a little boy who can’t tell anyone where it hurts.
By the time we left Noah tonight at 10:00pm, He was sound alseep, rubbing his face with his sock and we were at peace. Peace with each other and peace with God.
“Let not your heart be troubled; you believe in God, believe also in Me. John 14:1
This thanksgiving, I am thankful for my father in heaven, who loves me enough to Give Jesus for my salvation - A wife, who is everything I need to be complete, and a son - who God is using to teach me He can still work miracles, move mountains and change hearts.
Today we are standing on this scripture Romans 5:3-5 (New International Version)
3Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us
Friday - Post 2
Well, today was easier than yesterday - but still hard. We didn’t have as many struggles with Noah today as far as putting IVs & tubes in him. He ate a ton of yogurt (he thinks it's ice cream) and let me tell you - his bowels are working just fine! NO problems there at all. In fact, He made up for lost time.
He was still frustrated at the bandages around his head. If you have ever had a surgery, you know that sometimes stitches can itch and become irritated. He wanted to scratch and pull of the bandages all day. Our nurse during the day was Suzan. She had a great idea. She went over to the burn unit and grabbed a mesh hat - kind of a net - to put over the bandages. Worked like a charm, He was no longer able to pull the bandages off and that gave us a little bit of relief. Noah was talking more today than ever. He would wave bye bye and say it to those he didn’t want around. He even was holding his sip cup with his right and left hand, something he couldn’t do before surgery. He is improving with every moment. We pray this keeps up. The kept him in the PICU again today and tonight. We have accepted the fact that we can’t be with him 24/7 which as any parent knows is so hard. He managed to push himself up on his knees this afternoon and reach for me in his bed. I took him in my arms and sat down in a chair with him. This was the first hug he has had in four days. We are a very affectionate family - I realized this was more than likely one of the big things he wanted yesterday. I didn’t know if I could sit down with him but the nurse gave it an ok and adjusted all the tubes and wires and we had the best 30 minutes of the day. He sat in my arms so calm and peaceful. But six o'clock rolled around and there was a situation in the PICU with a child so everyone non-staff had to leave. Putting him down was heart breaking. I had to walk away while he was screaming my name. He doesn’t understand what's happening when we leave and that is so hard to deal with. The PICU has been closed ever since. So we missed our visit from 8 - 10 and more than likely 12 - 2. When they have to do emergency procedures on kids in there, no one can be around. We called his nurse every hour to check on him. Thankfully she said he was calm and that she was by his bedside taking care of him. Praise God.
It's difficult to let go of control and trust that he will be ok. It's difficult to let go of control of anything. As we left tonight, Jessica said to me "when Jesus spoke to the disciples and said follow me, they dropped everything and went after him. They didn’t get to choose their path; they just did what He asked them to do. They were walking by faith" That’s giving up control. To be put in this situation where we have little or no control has taught us a little bit more about faith. We are both control freaks, so naturally this goes against everything we want - God's ways are not our ways.
We are learning that to say YES to God is to say "I will follow you and go through what you want me to go through with blind faith." We can only trust that God is and will take care of Noah - in life and in death.
Hopefully we will be put in a real room tomorrow. This means that tonight is the last night for a while that Jessica and I will be together. One of us must stay at the Ronald McDonald house at night to secure the room and one of us will be with Noah. We will rotate the nights. This is another thing we have to trust God with. Noah is the main priority. His healing and recovery are what is forefront on our minds. We also realize that our marriage will also be tested in this trial. Pray for us so we can be strong for Noah.
There is so much heartache here. We left the waiting room with families everywhere devastated with disaster. A sweet couple that had been told their 4 year old may not make it 48 hours. A sweet mother with a child fighting sickle cell anemia, A couple that has been here for 3 weeks with a daughter fighting for her life only to be set back with a stroke. And the stories keep coming. On top of it all, we witnessed a dad who trying to escape pain, got so drunk he was passed out in a chair in the waiting room. The police came and escorted him out of the hospital and banned him from coming back. He can no longer see his son.
The odd thing about today is that in the midst of all this pain, at 3:30 during closed visitation hours, we had a short moment of normalcy - the Auburn/ Alabama game. It was a bit odd. Several of us sat under the TV watching, commenting and even letting out a few quiet cheers here and there. It reminded me that there is still a world out there still moving on - a world we will get back to very soon. As soon as 4:00 rolled around we shot out of that room and all of us were back where we really wanted to be - at our kids beds. It really put things into perspective - there is nothing more important that taking care of your family. Even though today was a big game, it was still just a bunch of young men pushing each other around trying to get to a small leather ball hoping to win a game and get some bragging rights. For once in my life I really could care less who won that stupid game, all I wanted was to hold my son and see him smile. I hope I will always have this as my priority and never put anything in front of my family.
As I close for the day I need to say thank you. Thank you my Facebook family - Your encouragement and prayers have kept Jessica and I standing. You have no idea how much of an impact you have made in our life with your "just in time" words of comfort. There are too many miracles to mention regarding this so I just say thank you to all of you!
To our wonderful family at Friendship Church in Athens - the video you made for us was one of the greatest gifts ever! We laughed we cried, and we felt your love and we know Noah will never be able to misbehave in that church and get away with it because he has 800 family members who love him!!!!!!
To all of you who have given to us to help with our medical expenses, words cannot do justice to our gratitude. We are so humbled that you love our little boy so much. Thank you from the bottom of our hearts.
Below is a video I made some time ago for a teaching on discovering God's will. It is about Noah and I wanted to share it with you. I hope it blesses you and that God would use Noah to speak to you.
Goodnight all - thanks for the prayers and for being part of our family - we love you!
John & Jessica .......... and Noah!
Thanksgiving Day - Post 1
Oh my word...I mean that's all I can say. I am so incredibly overwhelmed by the love from my brothers and sisters in Christ. I want you all to know that I've read every [email], and I want to respond so badly to each of them! Aside from the Lord, these emails and Facebook comments are what keep us going. Just to know that our baby boy is being lifted up [in prayer] by so many is enough to make my heart explode!
I don't know what's going on with our video posts, but we're trying to get it fixed. John posted a video of Noah calling for me today on Facebook - my prayers were answered!! When that little guy said my name my heart just melted. He is doing really well, and communicating with us as much as he can (calling our names, he asked for milk several times, he says "uh-uh" if he doesn't want something...it's awesome. I'm trusting that in the morning he will be able to drink, and then hopefully by afternoon/evening he can eat something. I'm also trusting that he will be free from infection and the wounds will heal quickly. Oh, and pray for John because he is about to throw this sleep-number bed out the Ronald McDonald house window!
Seriously...we don't have to words to describe how much we appreciate every person that reads this blog and follows our story. Know that we lift you up as well...and praise God for your encouragement. There is a scripture that always has amazed me. In John chapter 17 Jesus says this amazing prayer, and towards the end he prays for all believers saying:
John 17:20-26 (New International Version)
20 "My prayer is not for them alone. I pray also for those who will believe in me through their message, 21that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me. 22I have given them the glory that you gave me, that they may be one as we are one: 23I in them and you in me. May they be brought to complete unity to let the world know that you sent me and have loved them even as you have loved me. 24"Father, I want those you have given me to be with me where I am, and to see my glory, the glory you have given me because you loved me before the creation of the world. 25"Righteous Father, though the world does not know you, I know you, and they know that you have sent me. 26I have made you known to them, and will continue to make you known in order that the love you have for me may be in them and that I myself may be in them."
One day while reading this I realized...Jesus was praying for me here...I am one of those that believes because of the message and writings of His disciples...
Today I thought about how many people said they were praying for Noah, and how DIFFERENT all these people all. From different states, different countries, different cultures, different churches...despite our difference one thing is the same - we are all crying out to the Lord, and our faith is being strengthened.
Jesus said above in verse 21-23, "...that all of them may be one, Father, just as You are in Me and I am in You. May they also be in Us so that the world may believe that You have sent Me. I have given them the glory that You gave Me, that they may be one as We are one: I in them and You in Me. May they be brought to complete unity to let the world know that You sent me and have loved them even as You have loved Me."
Jesus asked the Father to make us one body - a body united for the cause of Christ - to share His love with others, and to pray for each other, and encourage each other, so that the world will see that Jesus is real and His love is real and His hope is real and His salvation is REAL. I've often thought how amazing it would be if as believers in the One True God, the God of our Salvation, we could put aside our differences, whatever they may be, and just love each other as Jesus intended us to. I see that happening through your prayers and emails. We may not go to the same kind of church, or worship in the same way, or listen to the same kind of music, etc. but we are loving on each other and encouraging each other in the Lord and that warms my heart. I see that prayer Jesus prayed so many years ago being answered today. The next time you see your neighbor across the street who goes to the church that has loud guitars and drums...or your relative from another town who loves the Lord and prays in tongues,...or a friend from work whose church doesn't use instruments to praise Him...or your daughters best friend who raises her hands during worship...just remember that the Lord asked for us to be united, and sometimes the "details" get in the way of that.
Please know once again that John and I are so appreciative of every form of support we have received. And please also remember the other children at this hospital as well. This is an amazing place and much healing is going on here. I saw 2 new children come into the PICU tonight - let's UNITE and pray for them and their parents also.
Happy Thanksgiving everyone!
Thanksgiving Day - Post 3
I realize that Jodie sent out a prayer request for Noah - please don't worry it's not life or death. John and I have had a REALLY rough, stressful day. As I mentioned early today Noah has been very hard to console. I believe he's in some pain, and it's possible the steroids have made him pretty much miserable, and very hard for us to deal with. When John sent the message we had been in the PICU with him since 7am, we were standing up hunched over his crib for hours, stressing out, trying to restrain him from ripping out IVs and hitting his head, biting his fingers, etc. It took both of us to try to keep him calm. So we were at our ropes end at that point (neither of us had eaten much or drank much). The nurses have given him several different drugs to try to minimize his pain and calm him down; they really haven't had that much of an effect. The PICU doctor contacted neurosurgery and they said since his vitals were fine, his drainage levels were fine, that he should be ok. He's still getting saline to raise his levels, but they had to put a tube in his nose to administer it since he wouldn't swallow it. Anyway, John and I are struggling today. Still praying, standing on the word...but it's been a little harder. We appreciate your prayers and we'll keep you updated on our little boy!
Thanksgiving Day - Post 2
Well, it's been a stressful day but still a blessed day so far. John and I didn't sleep well knowing Noah was in and out of sleep and calling for us as we left last night. We got a few tips on how to work the sleep number bed, so hopeful we'll rest better tonight!
We got called around 7 this morning to come up and sit with Noah; he had been awake for awhile and was pretty much unconsolable, screaming for us. So we got to come back to the PICU a little earlier than usual. His sodium levels dropped pretty low last night, so they're monitoring that and the doctor says he will need to stay in PICU again tonight. Jennifer (nurse) took out his art line, and it took quite a while to clot. John was helping hold Noah's arm down. When peaking to see how it was doing, Jennifer moved the gauze and blood squirted all over. Ok, John and I had rushed to the hospital without breakfast, or even a drink. Needless to say, John nearly ended up on the floor at the sight of the blood!
Noah has been really irritable today, frustrated, whiny, angry...he keeps hitting his head and trying to pull the bandage off. Please pray for him to have peace, settle down...if anything is hurting him I pray that God would reveal that to us. I'm having a hard time understanding what he wants or need...a very helpless place for me to be. That is the main source of my stress - my baby needs something, and I can't give it to him or even really comfort him. He was given some Benadryl and is hanging out with John so I'm praying that he will soon get some sleep!
Also, he is supposed to be drinking clear liquids to see how he will handle it, and we've only got about 3 sips down. He is asking for milk and ice cream, but he can't have those just yet. He is very hard-headed and won't drink what I'm offering.
Despite the stress, we had a nice surprise this morning. If you scroll down to the bottom of the page, I started a section about all the "God-sequences" that have occurred. I wrote about Noah's nurse Katie from Huntsville Hospital. She and her husband actually came today to see how Noah was doing. She had not received any updates so far, so we gave her the website link. I didn't get to visit with them, but John says they are amazing people of faith, and her husband prayed for us before they left.
I just want to take a minute to thank everyone at Huntsville Hospital...I'm not sure if I've typed this before...but because Noah was throwing up he was admitted there. While there, we were trying to figure out what was wrong with his leg. When U/S and x-rays came back fine, we really felt like a CT scan was needed. Because of that scan, Noah's life was saved. Our neurological surgeon told us if he hadn't come to Birmingham and started steroids when he did, he would have been dead in 24 hours. I am forever in debt to the staff at both Huntsville and Children's Hospital - the nurses, the doctors, the registration clerks, med-flight folks, the PICU staff...I could go on and on. Every bit of the timing was perfect. All of you were under the divine direction of the Lord, and I praise Him for that!
I think I've said a million times that I'm overwhelmed by His grace, His faithfulness, and the glory that He is receiving through my son's situation. Please continue to pray that God will be glorified in everything that happens. I will do my best to continue posting every God-sequence that occurs in the section below. God bless you guys who are keeping up with our story, and I pray you have the most amazing Thanksgiving of your lives. I know that I have never been more thankful than I am right now.
MRI Burn Update
This morning we were told that Noah's MRI was going to be a lot earlier than two in the afternoon. As the nurses began to prepare him for transport down to the unit, I became very anxious and upset at the answers from the doctors and nurses. They couldn’t guarantee the safety of the chemistry in his IV, they were bringing breathing tools with pieces of aluminum into the procedure - and I - being very ignorant about the whole process and the science behind it, became very agitated. The feeling of helplessness and the desire to protect him shifted my emotions into overdrive. I had asked yesterday that the head of the department be there to check the room and Noah. They were not sure he was going to be there. This only fueled my anger.
The chaplain and social worker showed up just at the right time. They helped settle me down and get my emotion under control. I asked everyone to try to see this scenario from a parent’s perspective. My boy is hurting and I want positive assurance he will not get hurt any more. I apologized for reacting in anger. We began another long walk down the hall.
When we arrived at the unit, we were met by a man who had the air of importance around him. He introduced himself to us as Dr. David Young.
He sat us down and asked us our level of education in science and mathematics because he wanted to know where to start with the explanation. As he began to tell the amazing power of the machine we understood how important it is and how much of a GOD send this thing is.
Then the reason for the burn came. This is their best guess, and not a 100% positive answer.
Sunday's MRI on Noah was an emergency procedure. The anesthesiologist wanted Noah to be warm so before the procedure he placed a new blanket on him. It was what they call a "space blanket." Cloth on one side, aluminum on the other side. The blanket radiates the body's heat back to itself. It’s a great invention. The blanket is new to the hospital and was not supposed to be in the MRI.
The MRI techs have their own blankets they usually use. They did not operate according to protocol and kept the blanket on Noah to keep him warm - not knowing it was unsafe.
Inside the MRI, the magnetic field is 20,000 times stronger than the earth’s natural magnetic pull. What they think is that the the electrons of the aluminum were excited and created a current which arced onto Noah's arm and burned him. We are very lucky it was the only place he was burned.
We were assured this would never happen again. All of these blankets have been pulled from the shelves. The manufacturer I believe is being contacted and hopefully this hospital will tell every other MRI unit in the world the dangers of the blankets.
Because we know it was unintentional, that they had Noah's comfort in mind when they placed it on him to keep him warm, - we choose to forgive the techs and all involved. Jesus has taught us to be people of mercy and grace. After being told all this information, Jessica said "If this was supposed to happen to Noah so that others would not be hurt then we accept it."
We are thankful to the staff at GE and the staff at UAB for such a deep investigation. We wanted closure - now we have it.
Please forgive those involved along with us and let’s not use this as an opportunity to tarnish an institution that does so much good for so many children.
Day After Surgery
This morning I woke up thinking of Noah and immediately called his PICU nurse. She said he was awake and watching Elmo! They had given him a different type of sedative last night around 7pm (I'm not sure why) so he's coming in and out of sleep. I'm very pleased with this, but it's really hard because I'm not there. I still don't know if he's able to communicate. And I'm assuming that he is still intubated. I just don't know! It is so difficult not to be able to be with my son, and not to understand all the medical jargon (all of Noah's nurses are VERY good at explaining everything to us, and they have all been so sweet and compassionate....but it's still all very confusing to me at times). My prayer right now is that Noah will be at peace and content in his little bed watching Elmo...that he recognizes his nurse (he's had her once before, and the next shift will bring another familiar face), and he is not afraid!! I told him last night before we left the hospital that Mom and Dad were coming to see him in the morning after his nap, so I pray that he remembers and is at peace.
He looked really good last night; there is some swelling all over his body. Especially in his eyes/face. He has 2 or 3 IVs and one art line...he also has a draining tube coming out of his little head that will continue to drain spinal fluid/blood to relieve more pressure. He is a trooper. We saw him move his feet - both of them! - last night as well as his left hand. Still praying God will restore control to his right side. And I pray that he will also be able to communicate with us. I just want to hear him say "Mama." Sometimes I would get frustrated with him because he just loved my name, and would say it over and over...."Mama, Mama, Mama, Mama!...." how ignorant I was.
So...all that said, God has encouraged me with a word today. This is the path He has chosen for our family. It may not be what I had hoped, or what John and I planned, but it is what it is. And I am trusting Him to take us step by step, never letting us look too far ahead as to not get overwhelmed. Here are some scriptures I'm thinking on:
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight. - Proverbs 3:5-6
Many are the plans in a man's heart, but it is the Lord's purpose that prevails. - Proverbs 19:21
Listen my son to what I say, and the years of your life will be many. I guide you in the way of wisdom and lead you along straight paths. When you walk, your steps will not be hampered; when you run you will not stumble.
- Proverbs 4:10-12
My steps have held your paths; my feet have not slipped. - Psalm 17:5
Your word is a lamp to my feet and a light for my path. Psalm 119:105
God is good, and He is going to see us through this.
Wednesday Update - 6:50pm
Because of lack of time, I have copied and pasted an email from our church contact, Celia. John contacted her earlier today to give Noah's status. I'll also quickly add that as of 6:15 pm, Noah had been extubated and was really moving his limbs; he took his passie out with the left hand and handed it to me....He was aware that John and I had to leave so started crying , "Mama! Mama!" then he also said "Dada! Dada!" Praise God! We were told that he may not be able to speak for a while due to the part of the brain that the surgeons had to go through. He was also able to communicate that he wanted some milk. And once he shook his head no when I told him he needed to go night night! That is SOOO Noah!! So, needless to say, we are praising God for His faithfulness and for healing. He is good!! I will do my best to post more after visiting hours are over at 10pm. Once again, thank you SOOOO much for all of your prayers, and support, and for loving my little boy. He's going to be ok. God bless!!
As we rely on God today for everything, I share with you a scripture Jessica Crowe shared in their blog regarding Noah: “Many are the plans in a man's heart, but it is the Lord's purpose that prevails.” - Proverbs 19:21
We spoke with John David a short while ago. I quote John David, “This is a VERY GOOD day!” They have just met with the surgeon who says that from the MRI, it looks like they got ALL of the tumor! Also, and very unexpected, they see signs that the brain is moving back over into it’s normal position! Also, tests are showing that his motor function is better than the surgeon expected it to be! They will be taking Noah off of the ventilator later today and he may even be moved to a room (out of PICU) tomorrow! AND, the surgeon is now not expecting Noah to have any more surgeries during this hospital stay!
PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!!!
Please continue to pray that Our LORD will restore all of Noah’s motor function and speech and that God will be glorified in this! Pray as well for strength and perseverance for John David, Jessica, and all of their families.
On the way to Birmingham John and I were emotional basket cases. We did have enough sanity to realize that freaking out would get us nowhere. We quoted scripture to ease our anxiousness and grief. John turned on 91.3 the Fix (thanks Mark Allen!) and every song we heard was about standing strong, trusting the Lord, hope....and we were encouraged. John reminded me of why Noah has his name. About 10 years ago, God impressed on John's spirit to name his first born son Noah. He would be a righteous man in an unrighteousness generation, and lead many to Christ. He would live and not die. In believing that God has a great plan for Noah's life, I knew John and I had a big responsibility in raising him. Just about every night after Noah goes to bed, I sneak into his room and pray for God's protection on him, for the Lord to bring him to Christ at a young age, for peace and the Holy Spirit to live in his heart, and for God to use him for His glory. God is answering my prayers - not in the way I expected or would prefer - but God is using Him. And healing Him. I also trust that Noah has peace in this surgery (which he's in as I type), and that Jesus is with Noah. I'm reminded that a couple of weeks ago Noah and I were heading into church for a Thanksgiving dinner we shared with our young adult bible study...we passed the big stained glass window with Jesus holding a baby, and other children scattered at his feet. He raised his hand to the window and started singing, "Bible, bible, bible!" (that's his version of Jesus loves me). I know that in Noah's sleep, Jesus is holding him, and singing "you are weak, but I am strong!"
Surgery Update - 7:44pm (John)
Well folks, I was right - today was the worst day of our life - and also the best.
We got a good report from the nurse around 2:00pm that told us Noah had done well in the surgery and that the doctor had removed most of the tumor. We praised God and rejoiced in the good news.
An hour later, the lead surgeon Dr. Wellons came out to meet us - and to take us to that private room - again.
It's hard to explain how long it took to walk 50 yards.
He sat us down and began telling us about the procedure. As they removed the part of the skull they noticed that the tumor was more aggressive than what they had hoped. They had hoped to enter the inside of his brain through a small portion on the top left side. The tumor grew inside the middle of his brain. As they developed their game plan, they knew a tough decision had to be made. They had to remove the part of Noah's brain responsible for movement on his right side and speech in order to get to the tumor to remove it. Once they could see it they did say it was every bit as big as a grown man's fist. He told us only 5% of brain tumors in children ever get this big. If we hadn't taken Noah to the hospital on Friday and they hadn't found it and began steroids to stops its growth, he would have been dead by Sunday.
The tumor had aggressively attached itself to key parts of the brain and had several veins going through it. They had to work meticulously and slowly as a team to make sure Noah remained stable. As the surgeons cut away parts of the tumor, they would have to stop frequently to put blood back in his body and get his blood pressure back to normal. It was very orchestrated - very good teamwork. Noah lost 1 and 1/4 of his total blood volume.
At a certain time during the surgery the doctor said he made it to the top of the brain stem. It was at the point much of the tumor had been cut away - especially the parts that supply it with blood. Tumors begin changing color as they loose blood and it became difficult to tell what was brain tissue and what was tumor, so they stopped, sewed him up and got him ready for recovery.
Here is the bad news. A tumor that looks as aggressive as this one does usually means it is malignant - cancer. We will not know for sure for 5 days at least. An MRI will be performed tomorrow so they can see just how much is left in Noah's brain.
This will be a process - and we have jumped the first hurdle in a long race.
Tonight, Noah is stable in the PICU. He is on life support to breathe for him and to help him maintain good blood pressure and other vitals. He is still asleep and will remain asleep until after the MRI which will not happen until after 11:00.
Jessica and I felt like we had all of the wind knocked out of us in that room. We stayed together there after the doctor left trying to figure out how we were going to tell our family and friends waiting in the lobby for us. It was so hard just to put one foot in front of the other, much less stand, as we walked to the crowd.
An old school friend of mine, Rachel Bobo Faulkner, sent us a message. She has seen tremendous loss and heartache in her life and I have respected her for years because she has kept faith in the midst of horrible circumstances. Her encouragement was, "God has chosen those He trusts for His glory."
We know God is being and will continue to be glorified through Noah's life and testimony. God is going to "Show Off" using Noah! God choose us to go through this. Asking "why me?? " is useless - the answer is always "For God's Glory."
We are so exhausted - I have never talked so little in my life - I have no words to say.
We know all things work for good for those who love Him and are called according to His purpose.
The scripture we are standing on today is Hebrews 12:1-3:
"1 Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, 2 looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
3 For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls."
May God bless all of you who have prayed for Noah. The gifts and outpouring of love have been overwhelming.
Surgery Update - 1:30pm (John)
The stories of pain here are everywhere. A 3 year old girl was just place in the bay right beside Noah's bed in the PICU. She has the exact same tumor situation as Noah. Same symptoms, same place, same size. I (John) spoke briefly with her mother and she has lots of tears and looks like we do - a deer in headlights. Pastor Steve gave me a vial of anointing oil before I left Athens. Believing God's word is true in James 5, Jessica and I have been anointing Noah every day and praying in faith over him. I asked this mom if she was a believer - she is. So we grabbed hands, anointed her daughter and prayed the same prayer of faith over her daughter as we have over Noah. I have no idea what her name is but God does and she is gonna be just fine, just like Noah.
Pray for this place, the people, the doctors, the parents - the children.
There is no time out for the calling of God - we are called to be salt and light every where. To be His hands and feet in every situation. Remember Jesus on the cross?? He ministered to the thief on the his side and trusted his mother's care to the apostle. Ministry never stops - we are blessed to be used whenever for whatever.
As I walked out of the PICU I heard a familiar sound - one of the other parents had logged on to my myspace music page and was listening to the music on it. Sonya had told him I was a writer and musician. He was listening to a song I wrote several years ago about the uncertainty of life and the certainty of God's faithfulness. I haven't listened to that song in a long time. It is interesting how God reminds us of His promises and His presence in such awkward ways. I wanted to share it with everyone to remind us all that worrying adds nothing to our life - the best thing to do with trouble is to know God has us in His hands no matter where we stand - in our chances and in our fear - as He holds us and until every question we have is made clear through His answers.
*Edited in 2019; below are new links to the song "Incredible You."
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.