Kyle's NICU Story in Pictures

Tuesday, January 8, 2008

Tues & Wed Kelly

Tues - I'm supposed to be paying bills right now.  I was supposed to be doing that yesterday too.  and the day before...  spending time with the boys and john is taking priority - and so is blogging I guess.  that is my mental sanity for now.  I spent several hours just playing with the boys this a.m.  I am still trying to balance my life, believe it or not.  when traci showed up today the boys were not dressed, had not brushed teeth or done nose saline or washed hands and faces. hair was not done - neither were the dishes. and I was not dressed and ready!  but we had eaten breakfast together, played this funny form of legos that make trucks and tunnels, put on a couple of magic shows, and ridden the tractor.  then I went to see kyle and had a great surprise!

Kyle wears clothes now.  He is 1510 grams and this means that they begin weaning his temperature in his fort.  He slept a lot though b/c this is hard work to have to regulate your temperature.  He was doing so good that Brandi said I could hold him.  this was new b/c now we swaddle him and I get to look at him and talk to him while I hold him.  much different than kangaroo care.  Today he was wide awake!   He looked at me while I talked to him and even when people would walk up he would look over at them.  He can't see too well right now but sure enjoyed listening to us talk to him.  He spent the majority of our time together trying to get something out of his pacifier!  he love the purple pacifier!

they are talking about weaning the CPAP soon so maybe next week we will be back on nasal cannula.  so now he is on a CPAP of 5 and is doing good.  next they will go to a CPAP of 4 and then to nasal cannula.  He will have another echo in a few weeks to check his heart clot and is still showing no signs of infection after his 42 day round of antibiotics.  He will be treated with Lovenox (sp?) for 3 months starting from 12/3/07.  This is to treat the clot.

Kyle will also be getting another EEG once he goes to nasal cannula.  This will help the doctors make decisions about the seizure medicine that Kyle is taking.  To get a better picture of Kyle’s brain the doctors will do an MRI when Kyle is bigger… closer to discharge.

So there is my update –that is what he is doing on now.

I am having a hard time keeping fear out of my mind.  Kyle is doing so good right now that is hard for me to imagine that everything might not be perfect.  When I was hold Kyle today and he was just looking at me with this look on his face that he really knows who I am… it was… I can’t describe the feeling.  It was like a deep connection – I have been connected to him but it was like now he is connected to me.  I could see in his eyes that he knew where he was – he knew who I was and whose arms were around him… whose eyes were looking at him and whose voice was soothing him.  And he has probably always known but today I could see it in his eyes.


Now that I see this … it just gets more real everyday – our relationship grows – the thought of everything not being perfect becomes scarier.  I wonder how much more I can ask God for.

What I mean by perfect is hard to speak as a mother.  I love my children regardless of where they are brilliant and where they might struggle – but I want God to restore him to perfection in his mind.  I want him to be brilliant.  I want him to think, and contemplate, and reason, and deliberate, and lead, and create, and laugh – all of it.  I want everything for him and the closer I get to this the scarier the thought of not getting it seems.

I am praying for protection from these fears – I heard the other day a mom in the pump room that just found out through the MRI that her baby has brain abnormalities.  She thought he was fine.  I find myself wanting to run out of the pump room and ask her “what was wrong with him… what did he have.. was he a preemie.. did he have a brain bleed?”  but not out of compassion for her son but out of a desperation to make sure kyle didn’t have what he had.  Could I be anymore selfish.  Could I operate anymore out of fear?  The doctors came into kyle’s pod the other day to tell a mom that her baby's brain was abnormal.  And they would take her home and treat her normal and see what happened.  This stuff is happening everyday there - maybe everywhere - I leave the hospital at night and hear the life flight helicopter and wonder how this can be real life for people.  all the time someone in tragedy , how can people deal with this. and how can this be what God intended?  hard for my brain to comprehend - I'm remembering that line that lady said in our blog - we need to abide.  we need to realize that we are not God.  we just aren't.

I beg you God to restore Kyle’s brain to perfection – give him the mind of Christ.  Sharp and strong.

Wed - we met with some friends today at the hospital.  They lost their son Matthew several weeks ago.  He was a 23 weeker also.  Precious baby boy - loved and longed for by mom and dad. still loved so much today too.  It was so encouraging to see them today.  encouraging to me that they care so much about kyle and about us.  what true christ like love that they would ride the elevator, walk the hall, check in at the front desk, endure these terrifying memories just to sit and let us know that they care...  about us and about kyle.  they are praying for him. this is christ like love.

I can not even pretend to imagine how they felt as they made the trek, as they sacrificed, to come see us.

Kyle today - he will go to CPAP of 4 on Friday.  Today I got to hold him again - so did dad.  and today he smiled at me - (I know it is gas) ... you know that new born grin, looks just like they are smiling.  He is really starting to look like a tiny newborn!  also tonight he had gas pain - he would cry out and then toot - hard enough that I could feel it through the swaddle!  Kyle also got ANOTHER good eye report today.  No ROP so far and no plus disease!  this is really good!

adorable.  please always keep praying for his brain and eye development.  asking the lord to protect his digestive system and restore his heart.


Anonymous said...

Thanks, Kelly. For not paying paying bills! I am so happy I want to jump out of my chair! :) We love you guys! Still praying for protection for Kyle and for a hedge of protection from fear for you. I also agree with what Carol said yesterday about a renewed sense of urgency to pray. I think Emily may have said it best, "Lord, please help Aunt Kelly get through this."
Hug the kiddos for me. (and john too!)

Anonymous said...

Kelly, I continue to be amazed at your transparency. While I don't actually "know" you (I only know you through Jeff and Karol Ann), I have come to consider you a sister. You are truly one of the few women I've ever known of who is not fearful of sharing your real heart. Having never had children of my own, I can only imagine the terror you face every time a doctor comes into the pod - for any of the babies/families. I do know, however, that the stress of trying to care for Kyle while maintaining the mother relationship with Jadon and Jack must be a real struggle. I was reading Hebrews this morning, and realized that temptation comes to us from the devil to try to pry us out of the Father's arms. And I realized that what I need to do is beg for His mercy and grace in my times of trouble, to keep me where I belong. I'm praying that for you this morning, sister. Keep the faith.

Anonymous said...

Kelly, I'm praying for you this morning.

Anonymous said...

Awesome news. there is some saying my mom made me in needle point I can't of it. But it is about how everything can wait because babies don't wait. They grow up. So all that other stuff can wait. Bailey will tell you getting dressed is overrated anyway!
As usual, thank you for sharing and opening yourself up to all of us. We are rooting for you and John and the boys!!!

Anonymous said...

Kyle is growing and it will take time! God is so amazing and awesome that he already has a plan made up for baby Kyle. So what if the nanny showed up and the house/kiddos were a wreck. Have a good time with the kids and have some sanity for a while. I wanted to let you know that you are in my thoughts and prayers.
Elyse Hahne

Anonymous said...

You go girl...let your heart take you where you need to be...
Stefanie wrote to you about the thing her mom made for her...I believe she was talking about this...
Cleaning and scrubbing can wait till tomorrow,
For...babies grow up...we have learned to our sorrow...
So quiet down cobwebs,
Dust go to sleep...
I'm rocking my baby...
And babies don't keep

My mother gave that poem to me when my first child was born...
I love it...

You are an amazing woman and you inspire me...
I know you and John write on here and read our words of comfort and our prayers...but just know that there are so many prayers that are going up for baby Kyle many times a day that are not written on here...
Love you guys,
LeAnn Smith

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!