Kyle's NICU Story in Pictures

Tuesday, February 12, 2008

More than enough - Healer

if you ask my husband if he want the good news or the bad news first he would say bad.  I would say good - he wants to get the bad out of the way - follow it up with good and end on that note.  I want to hear the good and then maybe the bad won't seem so bad.

john wins - bad news.

I spoke with the neonatologist in charge of the brain MRI study kyle is a part of.  He had kyle's results.  they are not what I had hoped.  The results were worse than the initial report.  I am struggling a bit on what to share.  this is my journal but I do realize that it is public - I will.  for the sake of the mom that is searching for some one ... anyone to identify with.  that is a terrifying feeling.  But I just need some time to process.

even from out of town john is everything that I need.  He shared some things tonight with me - some through words, some through songs...

Nothing is impossible for you

I BELIEVE  your my healer
I BELIEVE you are all I need
I BELIEVE your my portion
I BELIEVE your more than enough for me

I confess I think i believe this b/c there is nothing else to believe.  i have wanted from day one for some doctor, some nurse, some parent, some prophet... anyone, anywhere to tell me... to assure me that kyle was going to be okay.  my okay - not the politically correct okay that everyone reminds me of, not okay for where he has come from or what he has been through.  But MY OKAY.  perfect in every way with no limitations!  but now here I am - grasping for an emotion that makes sense - every doctor has come and many have gone, the test are done, the reports are finalized.  Kyle had a brain bleed.  I begged God to protect him from that.  It happened, I begged God for it to not grow in degree - It didn't stay a grade one - it progressed to grade 3, It didn't disappear on the ultrasound, his MRI didn't come back completely normal and astound any doctor.  IT DIDN'T HAPPEN.  I begged and begged and begged.  

All I have left is you God.  I am so broken hearted to confess that I have relied to you last.  I really do believe in you. I have watched you heal under my own hands - but then when it got too real, too close to home, when it started to hurt too bad and I got too scared... I turn and run to looking for a doctor or test or picture to give me back my hope and peace.  so hear I am.  I will believe b/c I have too - I mean I want to - fear is so huge, it can envelope my faith and my knowledge if I let it.  So with every breath I have I will fight to keep my faith.  I will proclaim out loud that I believe.

I do believe but it's like I have to claim this over and over and over out-loud to keep believing.   I am just so scared that I will believe and rest and then I will have been wrong - I want to go back to that romantic faith I had in my mysterious Father.  I don't know how though. 

I am very taken back by all of these emotions - the things the doctors said to me today were hard to hear, hard to keep my composure, hard to breathe... just hard.  My thoughts and prayers are endless right now but on to the good news....

Kyle is coming home.  Friday .... coming home.  this friday, Feb 15th.  this was his due date.  I am excited, I am nervous, I am scared, I am angry, I am overwhelmed.  my head hurts so bad from crying all day that it physically hurts to look at this screen - BUT - Kyle is coming home.

As of this morning at 11 a.m. Kyle was going to be there until March 15th or so having his surgery.  They decided this a.m. to let him do the surgery when he is bigger and off oxygen support.  5 minutes later I was talking with the MRI doc.  that lasted almost an hour.  5 minutes later the team walked in and said ..."can you do care by parent thurs?"  I said "sure".  they said "home on friday?" I said "sounds good!"

i didn't tell them that john was out of town until thursday about 6 pm and then out of town all weekend.  I didn't tell them that I need a bed, and a car seat, and all his clothes and sheet washed and my room set up for him and to learn how to use an apnea monitor, pulse monitor, oxygen tanks, give a shot everyday, reduce a hearnia.  I needed to buy bottle nipples, diapers, a thing to bath him on.  I didn't tell them that I had no one to keep my boys to come up and do all this, i didn't tell them that I was scared to death to leave them.

OVERLOAD!  I would like to say that I swung into high gear made several phone calls and all is working.  Caroline may never sleep again!  haha!  but it's happening - I have people helping me get it all ready with john gone and found some really cool folks to hang out with the boys.  Carol is an organizing gooroo! among other things!!!  and john got cancelled on for this weekend!  never thought that would be a blessing in disguise.  AHHH I still have to fix our medicaid problems we are about to loose it and we haven't even gotten it fixed yet!  and .....

i gotta stop thinking - my head is going to explode.

God has delivered my son.  I think... no.. I really do believe that God has healed Kyle.  i don't understand his way or why we are going to have to go through so much or why we have had to go through so much - I don't know how we are going to do this - physically, financially, emotionally, realistically. 

everyone says God sees the big picture and we don't.  I feel like I am staring at that bottom left hand corner part that is all white and so there is no way to even guess what it is a picture of.  beautiful, mysterious, just to real right now to be romantic.

I believe your my healer.

Your my every hope
calm my raging see
walk with me through fire
you heal his disease

i trust in you
i trust in you

I believe your my healer
I believe you are all i need
I believe your my portion
I believe your more than enough for me

Jesus you're all i need

nothing is impossible for you!
nothing is impossible for you!
nothing is impossible for you!
nothing is impossible for you!

you hold my world in your hands.

18 comments:

GranMammy B said...

Oh, dear Kelly, my heart aches as I read the fear, pain, faith, pleading & strength that is in your entry...I fell to my knees & prayed that the Lord would at that very moment give you assurance & strength to continue to walk this journey with as little fear as possible - You're human & you're a loving mother & so I know you're scared - - I can't even begin to know how you feel. But I want you to know that we are praying right along side of you...Our words in prayer & our tears do not fall on deaf ears or unfeeling heart... They are heard & felt by The most tender, loving, merciful God & He will not turn His back on you - or Kyle or us pleading for you. My prayer today is for you to wake up with a strength & assurance of a perfect future with your new son. I will pray with assurance that our God will answer your every request & calm your anxiety & absolutely astound the world with the healing & perfection in Kyle Sherrill.
Hallelujah! Hallelujah! Abba Father...in the precious, powerful name of Jesus.
GranMammy B
Barbie Weller - Mansfield

Anonymous said...

Kelly with every ounce of your being just hang on to the words of that song. He Is more than enough, He is ALL that we need. Your son is coming home!!! I am praising the Lord for this and I am so happy for you and John. The Lord has been with you and Kyle and will continue to carry you and your family the rest of the journey. He is not finished with Kyle and I am beleiving and praying that as Kyle develops and grow he will astound the doctors. I am praying for you as always, for peace,strength and endurance.
Kim McDonald

Anonymous said...

Kelly, My experience is that doctors tell people the worst news/prognosis to cover their fanny. Then God decides if and when he would like to prove them wrong! Don't give up hope! Babies can compensate for brain issues and do. Get early intervention involved - use every tool, every help, every strategy to further Kyle's development. I've seen a baby girl with brain bleeds who was not expected to walk, talk, etc. She walks and talks now! Plus, you get to have him HOME! How wonderful! He is your baby and you'll know instinctively how to care for him! Be strong and of good courage! And ask for help when you need it!

hallegracesmama said...

Praying for you now...

Kara Price said...

My heart aches for you. I remember the day we got the news of Truman's grade III and IV bleeds. It was the worst day of our lives because of the horrible, horrible things that went through both of our heads and the end of the "dream" you have for your kids. I remember my husband posting our on blog at the time, "it's hard to be hopeful." There's not a lot I can say now, other than I'm sorry that another child has to struggle with this.

But, now 18 months, the repercussions of such things have simply become reality for our family. We are working through the challenges that the bleeds have brought for our son. I won't tell it's not hard and that we don't still struggle with the "what could have beens" if he had been born at term or if he hadn't had the bleeds. It's hard when other children walk before your child, talk before your child, eat and grow without struggle, do all the little things in the "right" ways and at the "right" times and leave your child behind.

But, I will tell you that with a lot of therapy, prayers, love, and lots of parent support and pushing, Kyle may achieve more than you suspect.

Anonymous said...

I hear and understand your fear. As I approach Jace's heart catheterization, I am dealing with fear daily of what the future holds for my son. It is a daily spiritual battle. I think satan knows that is where we as mom's are most vulnerable and attacks us. Every morning I try to tell satan to take it to the foot of the cross. My God loves me and will care for me. That helps to start the day off that way. I also quote Phillipians 1:6 to him... I am sure that the One who began a good work in "JACE" will carry it on until it is completed. You do the same but replace Jace with Kyle. Then, just don't let those thoughts land. As soon as a fearful or that "what if" thought starts to come, Phillians 4:8 it ---- Finally, my brothers and sisters, always think about what is true. Think about what is noble, right and pure. Think about what is lovely and worthy of respect. If anything is excellent or worthy of praise, think about those kinds of things. I find that if I just say out loud these verses at that time, it helps me not to let those thoughts land. Lastly, ask God to continue to confirm His answers to your prayers. You and others have had definite God experiences where you have felt Him say he is healing him... ask God to confirm. Seems like impossible but He can and will. I know this sounds so easy but it isn't. It is one day at a time and sometimes an hour by hour thing. Some days will be tougher than others. If something in your environment is not positive and uplifting, get rid of it. Change the radio station if it isn't encouraging you. Look for all that will help you stay positive and fight satan. HE WILL NOT WIN!

Put on your armour of God and take up your cross! Praying that God will give you peace that passes understanding and the positive resources you need. God Bless,

Julie Andrews

dreamingBIGdreams said...

SO HAPPY to hear your good news.
:)jamie ivey

Anonymous said...

Your family will get through this!!! CONGRATS on Kyle coming home this week!!!

Anonymous said...

Kelly - I was forwarded your blog by a friend and have kept up with you since early on in Kyle's fight. I have prayed for Kyle often and continue to do so. Kyle has come so very far and the fact that he is going home is truly a miracle. I very much believe as you do that we must trust in God's plan, even when at times it is very hard to do so and we cannot understand it. I also believe that babies are miraculous little beings and no one but God knows what healing Kyle has yet to do. I have seen your strength and faith, and that of your husband, in your posts over the last few months. I have also seen the amazing network of support that you have in your friends and family. Because of these blessings, I KNOW that you all will be not only fine, but great!

I wanted to share something with you that a friend of mine shared with me. She has a child with his own unique challenges. Someone gave her this when her son was born. She cried the first time she read it. Now, almost 3 years later, she thinks that it is fabulous! And, she, her son, and her family are not only OK, but they are fabulous! Here goes...

"Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

Hang in there, Kelly! If God chooses Holland for you, Kyle, and your family, I know one thing for certain...

He has CHOSEN to place his lamb Kyle is wonderful, very capable hands to love him, to fight for him, and to provide him with all that he needs.

Anonymous said...

I have to tell you my first reaction - HOLY CRAP!!!! Kyle is coming home!
I know the bad news part - and I have to say that I am over shadowed by the good news. I can't even begin to try to understand how freaked out you are and how scary it all is. But he is coming home! You know we are 2 HOUSES DOWN THE STREET if you need anything!
He is coming home!!!!!
Stefanie

Mommy Bee said...

Kelly, I am amazed at your strength and courage. I am so happy for you and your family that Kyle is coming home. You all will continue to be in my thoughts.

Amy said...

Dear Kelly and family, I just wanted to let you know how total and complete strangers are holding you all up in prayer right now. We are on our knees, not just saying, sure, I'll pray, but we are crying out to God with ferver and believing for HIS grace for complete healing for kyle. I have been praying for some really sick people in general lately, and my prayer is always, Lord, with all the terrible horrible things going on in the world right now, let this healing of Kyle let us know that you are still in control. Let everything else fall to the wayside, but bring healing to him. Please know we are also pleading for him to be normal in every way. Kyle has already moved so many people in his short life, I can't wait to see what God has in store for him. Awesome things. BIG things. thats our God, thats how He does things. hugs and prayers, Amy

Anonymous said...

Praying for you... and precious Kyle.

Anonymous said...

my heart is overjoyed for you kelly and your whole family having kyle at home with you will be such a dream and you will work through all of the laundry and overwhelming stuff day by day! You are a wonderful mother and I know you and John will work through it!, sefishly i am so sad... who will i sneak out to go cuddle! your family has made such a positive impact on my life and i will miss each of you. Kyle was the light in my dark tunnel back in october and i know he is a special gift that was sent down to be here with us at 23 weeks for a reason that we can not seem to wrap out minds around but i can tell you for me he is such an amazing blessing! once again congratulations and please keep intouch! e-mail me pictures of him frequently and i am here if you need.. you know who this is and how to get a hold of me :) i will miss you all deeply!

Adam & Andrew said...

Praying for Kyle and so happy that he is coming home. What a miracle to Praise God for! Our neurologist told us he had plenty of patients who did not match their MRI's meaning there are children with bad MRI's that are "normal" and then some with severe disabilities that have normal MRI's. The MRI is just a glimpse, look to Kyle and how well he is doing now! Praying that you will be filled with peace and hope.

Anonymous said...

Kelly,
As I read your fears/comments on Wednesday, I was trying to think of something to say to you to make you feel better. I am not one of those folks that grew up in Church and know all the right things to say. However, I know when my Lord talks to me and when I was reading your comments and thinking about you and praying for you yesterday, He said...

BE STILL AND KNOW THAT I AM GOD.

I KNOW that He is in charge and I KNOW that Kyle is going to be FINE. My prayer for you is that you will know the same thing and have a sense of peace about it that can only come from our Savior and Lord.

Still praying, still believing and thanking God for what He does.

Candy Humber

Anonymous said...

I am so proud and excited and you are truly blessed. It'll be wonderful to have your little man at home! Congratulations! Don't let all of the scary things overwhelm you. You'll be a pro before you know it!

Former preemie mom
Thinking of you and keeping you in my prayers.

Anonymous said...

I love you so much Kelly. We are all going to continue to pray. We know your little momma heart - given to you by God - is going to continue to watch, fear, feel comfort - all of those rollercoaster emotions. We all do from the moment those little people are conceived for the rest of our lives, from what I hear. So many people love you and will pray with you. Your honesty is so beautiful - so true - and so what we all feel at times. I am so thankful for you. I pray for you - for your sons. I ask that the Lord would give you an extra measure of grace, of blessing, of peace. I can't think of anyone who deserves it more.

Jen

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!