Kyle's NICU Story in Pictures

Friday, April 25, 2008

Please come out & support John as he releases the new CD!

Well - the first CD release went really well - there were around 300 or 400 people there - the band was amazing and the songs spoke for themselves.  This week we will be showing a video during what I call "Kyle's song" showing some of his stay in the NICU and home coming.  We will also be dedicating Kyle during the concert just before his song - which by the way is called - God is Here.  So please if you have time come out and support our family and help us celebrate a new chapter in life as John releases his newest work - please do!  So many of you have prayed for Kyle - some of you I have never even met - please come out and help us dedicate him to the Lord.  I would love to meet as many of you as I can.  not to mention it will be a great concert!

John and I are both so pleased with the CD - so many people went into making this recording a success - we can't wait to watch as God uses it to bless others.

So... The CD release party is this weekend!  We would LOVE for each of you to be able to attend.

This Sunday, April 27 at 6pm, WoodsEdge Community Church, The Woodlands, TX 

Email or call me and let me know if you can come!  I would love to be looking for you!


From Houston (south)

From I-45 traveling north, merge onto Woodlands Parkway via exit number 76B. Pass the lake on your right and then turn left at South Panther Creek - which is next major intersection.  After the turn the church is directly on your left.

From Conroe (north)

From I-45 traveling south, exit 77 toward Tamina Road / Research Forest Dr. Turn right onto Research Forest Dr. Turn left onto Grogans Mill road. Turn right onto Woodlands Parkway.  Pass the lake on your right and then turn left at South Panther Creek - which is the next major intersection. After the turn the church is directly on your left.

Thursday, April 24, 2008

Time to pray for Kyle again - Kelly (new pics below!)

Kyle is sick.  I think he has a little bug.  He had some sinus type stuff on monday (not too bad) - we got his 6 month shots that day too!  Then tuesday woke up (after sleeping 15 hours straight!) and had laryngitis (you couldn't hear his cute little cry!)  He wasn't horse from crying b/c he hardly ever cries!  He just had not voice!  No fever - and he has thrown up several times yesterday and today.  He is sleeping a ton too - so I know he doesn't feel too great!  However - when he is awake - we are still getting lots of those new grins!

That is not really my concern - Kyle seems to be getting over his bug and getting better quick!  I would like you guys to pray for Kyle's brain and physical body.  I mentioned after his appointment with Kyle's physical therapist that he was looking really good!  A couple of weeks later we met with Kyle's neurologist - he said right off that Kyle had high muscle tone and hyper-reflexes.  Both symptoms that stem from Cerebral Palsy.  I did not appreciate this doctor - not because of his opinion but b/c I could not get him to explain himself to me - he just kept saying over and over that he could not predict kyle's future - strange thing was that I never asked him to - I wanted him to explain to me Kyle's brain injury.  I can cover the future stuff but as a mom I would like to have an understanding of what physically has gone on in Kyle's body.  Anyway - I did not put too much stock in what he said but I do realize that CP is one of the things that Kyle is at risk for.  Then we visited our Pediatrician for Kyle's 6 month check up...

an aside - for those of you wondering if I took all three to this appt!? - yes I did!  better than last time but not without incident!  story for tomorrow!

back to kyle....

I mentioned the findings to our Pedi and he checked Kyle over and said that he could feel - some tightness in his tone.  and he said we would write down mild hyper reflexes.  the reflex issue comes from the fact that he still quivers his chin alot - from what I understand that is a normal newborn reflex - but Kyle still does it at 9 weeks old (corrected).  and he also quivers ini his legs.  Seems to happen when he is taking in info - sensory or listening to a new voice in the room or changing positions, etc.

Then today we had met with our OT.  She said that she also felt some high tone (stiffness) in his muscles.  Not what I wanted to hear.  but none the less.  Kyle is now on OT therapy once per week and then I do his therapy with him 4 times a day.  We will add infant massage also 4 times a day before therapy (or we call it "play time")!  This will be challenging to work in but I am determined to give Kyle every opportunity to meet his milestones as close to his corrected age as he can.  I used to think - who cares if he crawl late or walks late - any micro preemie mom can fill you in - the docs had to do it for me - it is really important for these little guys to achieve these motor skills b/c our motor skills are what develop our muscles and thinking and processing of sensory information.  Kyle's brain learns when he puts his toes in his mouth - it also builds muscles that will help him to be able to crawl and walk and run one day.  so stretching his legs so that his toes reach his mouth and teaching him to be able to cross center - Left hand to right leg - are SO important!  I am learning so much lately!  

and still I am learning about God - he is jehovah rapha - so I am asking you guys once again to hit your knees and join me.  I know that God glorifies himself, i know that God loves us, I know that God is omniscient and sees the big picture, I know that God has created Kyle, I know that Kyle's brain has suffered injury and I know God can restore and heal him.  I am begging that for Kyle.  I am asking that God would restore Kyle's muscle tone heal and restore his brain - making everything perfect for his little bones to grow strong and muscles to coordinate the most intricate of movements!

Thank you for praying.

Sunday, April 20, 2008

Article in the Houston Chronicle

The article below is interesting.  One of the Drs was one of Kyle's docs.  I mentioned him before.  It is hard to read stuff like this b/c I know they are trying to help parents but what if we had chosen not to try with Kyle - b/c we feared his hard road.  or b/c we feared the future for us.  No parents wants their child to suffer - but wow - I don't think there is an answer to this one.  at least not a right or wrong answer anyway.

Your baby is born, you are given horrifying statistics that are meant as predictors of their life and quality of life.  and I get that we believe in God as a healer - but we use statistic everyday in everything - so do we believe them?  they are a part of the natural world so if we do are we giving up the supernatural?  Just questions - not really looking for answers.  I am learning so much still about faith and what that truly means.  That it really is the substance of things HOPED for and the evidence of things not seen.  meaning I can't know the outcome - faith is not knowing - faith doesn't even seem like the same thing as believing to me.  b/c believe me - I have bowed my head squinted my eyes, strained my head, begged God until I vomited, cast away doubt in the name of Jesus and my "wish" or "want" or "prayer"... "desire"... was still not granted.  God really is in control of all this and we really do have to have faith - we really do have to hope for things and trust in things we can not see and maybe will not see.  So all this to say I think it is AMAZING that the doctors have taken the time and energy to gain this information.  I think it is beneficial and helpful to the parents to know what their little lion may be up against.  But... wow... what a responsibility as parents to faith.  what a call to trust our Father in heaven when we can not see how our child could possibly be that 3%.  When there is 97% stacked against him. or whatever percent you are. I guess it is the doctors job to give this information to parents and i think it might be our job - as followers of christ - to give the hope to these parents - to remind them of truth - to remind them of faith.  There were those who did this for me - someone has done that for all of us.  B/c God has sent his spirit to live within us - we must do this for others.  We must be joy and hope and life and faith and light.  here is the article and below I have shown kyle's outcome on the calculator - it is actually better than what we were given the day he was born but they also thought kyle might be younger than 23 weeks.  again - kyle has obviously been rescued by God.

April 16, 2008, 11:35PM

New way to assess preemies' chances

Calculator considers factors like sex, weight

Copyright 2008 Houston Chronicle

Doctors and parents facing anguished decisions about the treatment of very premature babies will now have better information thanks to an online calculator that emphasizes more than just how long the infant was in the womb. The statistical tool is based on a study led by University of Texas Medical School at Houston researchers, who found factors such as weight and gender also strongly influence outcome when babies are at the fringes of viability.

"This was born of some degree of frustration that we can't give these parents a better sense of their baby's chances," said Dr. Nehal Parikh, a UT-Houston professor of pediatrics and one of the study's authors. "At such sensitive times, it'll mark a significant improvement to be able to share evidence-based data about how infants on average fare."

The calculator furnishes estimates of risk based on data from the study. Doctors (or parents) plug in five total factors and the calculator determines the likelihood of such a baby surviving, as well as the odds of him or her having moderate or profound impairment.

The factors, besides gestational age, birth weight and sex (girls fare better), are whether the mother received prenatal steroids to help fetal lungs mature and whether the infant was a single delivery rather than one of twins or more.

The study, published in today's New England Journal of Medicine, looked at babies born 22 to 25 weeks after conception, the tiniest, frailest category of pre-term infants. About 15,000 such babies are born annually, and they require aggressive intensive care to be kept alive.

Many nevertheless die soon after birth, while some survive and reach adulthood, pretty much unaffected. The rest experience some disability, ranging from having to wear leg braces to severe cerebral palsy and profound intellectual disability.

Current guidelines give odds of survival based solely on gestational age, though many doctors said they tell parents the likelihood may be better or worse. They acknowledged, however, that the adjustments they make are more intuitive than scientific.

In addition, the study suggests the factors may be more significant than doctors had thought. It found that a baby born at 23 gestational weeks would have the equivalent chance of one born at 24 weeks if the sex were female, the mother got steroids, there were no other babies born alongside, or he or she weighed an additional 2/10 of a pound. More than one of the factors in the baby's favor increases the equivalent age slightly.

"Until now, all we knew was survival data based on gestational age," said Dr. Eric Eichenwald, a Baylor College of Medicine pediatrician and the co-author of a commentary that accompanied the paper in the journal. "Even if many doctors already told parents that these other factors influence outcome, I think this shows they have a bigger effect than most would have thought."


No recommendation

A number of doctors said the new information would give parents a better sense of the possible burdens of intensive care.


But no neonatologists interviewed said they thought the new information would result in more decisions to provide only comfort care to the baby, to not pursue the sort of aggressive therapy that might save him or her but is also painful. The study makes no recommendation of when aggressive care would be inappropriate.

Parikh said that is a decision for individual parents and doctors to make. Currently the odds of survival are so long for infants born in the 22nd week of pregnancy that it is not uncommon for only comfort care to be provided. Infants born in the 25th week, on the other hand, routinely receive intensive care.

But as long as a doctor tells parents there is a chance the baby will survive, the vast majority want everything done, said Dr. Daniel Batton, a member of the American Academy of Pediatricians' committee on fetus and newborn.

"I don't think this new study is going to change that," said Batton, whose committee is working on guidelines that will incorporate the study. "I think this is an important study that pulls information together into one package and will stimulate conversation, but I don't think it'll change parents' decisions."

The study of 4,446 infants found 49 percent died and 21 percent survived without a disability. About 12 percent survived with significant impairments such as blindness or cerebral palsy, and another 12 percent had more severe disabilities.

The study was conducted between 1998 and 2003 at a network of academic centers, including Memorial Hermann Children's Hospital in Houston, with the most advanced neonatal care facilities.

Researchers stressed they don't know yet how well the calculator's data will translate to less sophisticated hospitals. They called for parents scheduled to deliver prematurely to go to academic centers if possible because they so improve outcomes.

The National Institute of Child Health and Human Development provided funding and researchers for the study.

Estimated outcomes* for infants in the NRN sample are as follows:

OutcomesOutcomes for All InfantsOutcomes for Mechanically Ventilated Infants
Survival Without Profound Neurodevelopmental Impairment7%11%
Survival Without Moderate to Severe Neurodevelopmental Impairment3%5%
Death or Profound Neurodevelopmental Impairment93%89%
Death or Moderate to Severe Neurodevelopmental Impairment97%95%

Thursday, April 17, 2008

Preemies Making Headlines - Kelly

This article is great.  Kyle and Rachel Fox, parents of Hannah Fox (a fellow former 23 weeker) have been a life line for john and I.  As soon as they heard of Kyle they were at the hospital and taking us for dinners, showing us the ropes and most importantly offering an ear and a shoulder.  Hannah is an inspiration.  She is beautiful and even thought she works hard, she is developing wonderfully.   In addition - Dr. Parik that is mentioned was one of Kyle's neonatologists.  He is amazing and has been very instrumental in me understanding Kyle's brain insults.  Hermann Children's truly is an amazing place - a side note - hannah was in the same pod kyle was admitted to - 5 years ago!

When you read the statistics... Kyle is male, I did not receive steroids, many doctors and nurses felt that kyle was less than 23 and 4/7 (this was b/c of his skin and lung lack of development), and he was 1 lb 3 oz at birth and lost down to under 1 pound b/c literally he would lose fluids out of his skin.

so you can see why they gave Kyle less than 1% chance of survival.  and 0% chance of a "natural" life.  we are skipping "natural" and are now on our way to "supernatural"!

Saturday, April 12, 2008

Bath Time Pics - Kelly

Look at those cheeks!
"You want me to do what?"

"Look at THOSE cheeks!"
"This is great!"
"Does anyone care that I don't want to do this anymore!"
"I guess that wasn't so bad!"

if you can't tell - Shauna's back in town!  :)

Friday, April 11, 2008

New Look - Kelly

I am sooo not the creative one in our family - but I am in the mood to overhaul!  It took MANY of you emailing me and threatening me if I did not let you back inside our days!!  I'm so glad that you did.  and I am back and have LOTS to share.  but... one story at a time.

I have begun reading some blogs - I know - me.  Most people that know me would swear to you that between mommy, running admin of 220, work, the Y, and a social schedule :) - when do I have the time.  But wow - the encouragement out there.  There are so many women who have been through so much more than me and they love life, move forward and smile!  Nice thing about their blogs is I get to see that even they have fear.  So you will notice my blog links that I have now - it will grow - but these are those I admire - those that are strong and they make me strong.

I still really believe I am learning what Jesus meant when he said "I will send my spirit to be with you".  I am seeing His spirit in so many people as our lives touch.

You all probably want an update on kyle and not my spiritual life though huh?

the last I blogged Kyle had a good PT report!  since then - wow - it just gets better.  Kyle is almost 8 weeks old and most eyes on him all say great things!

He has been discharged from Opthamology (she did suggest we have his eyes checked when he is 2).  Kyle has been discharged from Cardiology and Hematology - his heart echo and all blood work came back perfect!

My favorite appointment so far has been with a PT named Sarah McMahan with The Team Approach.  I got hooked up with her by the most amazing OT that we met at Hermann.  Magda!  She took such good care of Kyle and was a huge resource as we went home.  She filled Sarah in on Kyle and what he has dealt with in the NICU - specifically the brain bleed and MRI results - Sarah agreed to take him as a new patient.  However after her evaluation she decided to manage his care by evaluating him once a month but she will work with by phone the ECI therapist who will come to our house.  This will be on a weekly basis.  CAN YOU BELIEVE THAT!  talk about the best of both worlds - this is a woman that lectures at universities across the country about Neuro-development therapy!  and I really like our ECI OT too - she is great with Kyle.

So - when Sarah met with Kyle she was evaluating him but you would hardly know it - she was talking with me and really just seemed to be playing with him.  Kyle was pretty tired - it was at the end of the day. and still he got a great report!

Sarah said he was very symmetrical - meaning he moved and stretched on the right like he does on the left. Kyle is missing white brain matter on the left so this makes his right side at risk for CP.  She did not see any signs of CP as of now!  I thought that was amazing!  So then she proceeded to ask a bit of history on kyle and then wanted to know my goals for him in therapy.  I told her I really want him to meet his milestones - I don't care how early or late but my goals are that he can meet them!  That he will sit, and crawl and walk and reason and be creative and laugh and RUN and do math and go to college and fall in love with a bride and have a family!  (not too much to ask I thought!) and then she said "can I be honest with you?"  and I cringed ... I just knew she was going to bust all my bubbles and tell me to stop being unrealistic!  Well - she said this "If I did not know his history - his bleeds and birth weight... - I would not even know looking at him today that he was a preemie.  minus the oxygen of course!"  Isn't that amazing.  She also commented again that she was not prepared for who kyle was - he just did not match his discharge summary - He really seems to be doing great!

Thanks for all of your patience with me - as I try to update and get back into the swing of life.  I do love sharing on the blog.  So many of you will never know how your comments have touched me, your text messages, voicemail's.  Your encouragement is from the spirit of our Lord.  Thank you!

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!