Great Preemie Article

This is a great preemie article!  I especially found the links to the side informative.  It really puts into perspective the odds that these little ones face.  It is still difficult to think back on what kyle went through when he was born or my fears during those days but I don't ever want to forget.  I want to heal but not forget.  Great article.  Thanks Lindsey for the link and for always keeping us informed.

13 months - 9 months corrected

On November 15th Kyle was 9 months corrected.  On November 22nd Kyle was 13 months old.  I am amazed at all he is doing at only 9 months corrected.

Kyle is crawling - not just bunny hop or army but hands and knees left right pattern (this is a big accomplishment!) crawling.  The other day kyle did 2 things that show great cognitive skills!  He was playing with a blue shape toy - eating it i think - He accidentally drop/tossed it and it went 4 feet away or so and under his toy slide.  He got on his hand and knees from sitting, crawled over there, ducked under the slide, got the toy, sat back up and continued to eat the blue shape toy!  This is GREAT motor planning!!!  then just a few minutes later - Jadon and jack were sitting down with me reading our bed time story - they were getting a bit wired (who knew - reading - bed time -wired - those all go together right?!?!)  Kyle started squealing and crawled right over to be in the middle of it all.  I can't even type that with out tears of joy flooding my spirit!  That is pretty close to my vision of all three of them in the back yard running and playing!  We really will be there - we really will.  it is still hard to just embrace that and run.

This past week kyle also signed "eat" and "more" on his own!  He now recognized that when he can not see something it is still there.  again - GREAT cognitive stuff.  I keep saying that b/c motor planning, and cognitive have been said to be kyle's areas that he will most likely struggle and they are the areas he has been the most delayed.

Also in therapy yesterday, Michelle (this is Kyle's OT that he sees weekly) handed him  a toy in his right hand and then offered him another toy far out to his right side.  usually kyle would drop the toy in his right hand to grab the new toy.  He had not connected that his right and left side could work together.  this is a HUGE milestone for Kyle!  He did it.  He moved the toy in his right hand to his left and went for the new toy with his right hand.

I don't even know what to say.

Kyle I am so proud of you.  You work so hard everyday - and your precious attitude is like non other I have ever seen.  Your determination to play with you big brothers astounds me; your laugh is so joyful it is almost like you know - you know what you have been through and you are so happy, so determined to grow into who the lord has created you to be.  You are the bravest little boy I have ever known.  I love you.

I am praying for my heart to believe what my mind can not understand.  My husband is the most beautiful picture of this.  His faith, his true love for God and who jesus was on this earth, his passion for people to see holiness, his desire to pursue - it is like no other.

this video is of kyle tasting ice cream for the first time.  this is the first time we saw kyle look for something out of his sight!

trying... kelly

I would not say that I am at a loss for words.  I am at a loss to write out my true thoughts.  I find that the more honesty I put forth the more vulnerable that makes me.  Vulnerability is not really my strong suite.  In fact I took a personality profile once that pinned me as flat out defensive.  But - I will pursue freedom by continuing forward in honesty.  Being that this is a blog it feels really strange to stand here and (yes... I am actually standing) and proclaim these things - but if I look at it as a journal that will help others and motivate me to move forward then I guess it is worth it.

speaking of worth it.... I had a long conversation about life and godliness with a dear friend of mine yesterday.  She begged me just by sharing her thoughts to remember that "it is going to be worth it".  this line comes from a very powerful song that means so much to both of us and our pursuit of christ.  I can't even pretend to know what that means today but I will know again one day - not again but anew.  I will know.

Her husband... a beautiful, strong, faithful man of God (ALMOST as amazing as my own "Babe") who will one day soon be walking alongside my husband in ministry.  We can't wait!!  Anyway he shared with me a quote.  It is one I will live by.  It is hope.

"I prayed for Faith, and thought that some day Faith would come down and strike me like lightning. But Faith did not seem to come.  One day I read in the tenth chapter of Romans, 'Now Faith cometh by hearing, and the hearing by the Word of God.'  I had closed my Bible, and prayed for Faith.  I now opened by Bible, and  began to study, and Faith has been growing ever since."    DL Moody

Something I have learned about myself....  All my life I have been building my formula.  The one that tells me who I am - who john's wife is, what  a mom of 2 perfect boys looks like, who runs 220, who makes life in our home work and who doesn't need or want anyone's help.  My formulas also told me who God is, how i interact with him, how he works in peoples lives and how  he doesn't.  I had a formula that keeps it all making sense.  then the "mystery of God" was this beautiful thing that I did not understand.  

It sounds silly but really, I would hear one sermon and thing "that's it!  that makes sense" and I would adjust my life too it - mix it into the formula.  Then I would see another person live and hear their philosophies and I would think "wow! that makes sense too!"  and another and another!  I fear in the christian life I am not the only one who has forgotten to look to God, our individual creator, and has looked to others around us - the church, other people, books - to decide our formula.  the only problem with these is that these are all just people - like us - that have learned something of God then shared it with the world.  maybe they presented it as a formula or maybe we (hang on... "I") made it one.  but they are just thoughts.  just ideas.  many of them good.  but many, many, many of them just wrong.

So, then on October 22nd all of my formulas stopped working.  I couldn't do anything by myself, my life wasn't perfect, my son wasn't going to be the 3rd perfect blond haired blue eyed child that played gracefully in the back yard (so we thought!  :)  ).  I couldn't figure out how to communicate with God that would make him do what I needed.  What I desperately needed...  Kyle hurt, my marriage hurt, my boys hurt, I hurt - all the time.  and no prayer, no formula, nothing I had a grip on could get me out!  as of that day I lost my formulas for life.

I closed my bible and begged God for a new faith - really I was begging for a new formula.  Everyone one I knew with a less than perfect, or maybe I should be using the word easy, life was at a distance.  Women that had lost a child, women with disabled children, people starving, people homeless or with out a job.  They were all at a distance.  All of the sudden I became one of them.  Wow - feels shallow to admit it but this has thrown me for a loop.  My foundation was built on formulas, formulas that told me who I was, how to act, how to be.  they stopped working and my foundation was gone.

I know a beautiful woman with a son who is autistic.  She is a friend of a friend.  and this is what my friend told me the other day.  She said that if her son was to say one word to her, just one word - she would say that healing has come.  However I am asking for a whole sentence that comes out sounding just like his big brothers to consider "healing" to have come.  my dear friend reminded me that Kyle has been healed.

Can you believe that me, his own mom, would need a reminder....  I did.  and it did me wonders.  Kyle has been created and healed to be who he is.  I want so much for him.  I love him desperately.

On Feb 12 the day of kyle's MRI results,  I shut my bible and just begged for a new formula.

I will today open my bible and let faith come by hearing and hearing by the word of God.

Growing, Growing, Growing... - Kelly

It has been so long since I have posted anything. The month of kyle's birth - or birthday - just reliving that... i thought I couldn't share about it but I will - I will for the sake of honesty, for the chance that some one else is like me and not living in a perfect mind that exists in a perfect world being seen by her perfect children and family and blogging about all perfection in her perfect blog. Wow - as I read that line I'm laughing b/c it sounds so bitter - haha - but really it is not bitterness. I think it is moving towards healing. really - I exist in a new world - one that begins in my mind and extends outward through my husband, my children, my awareness, my religion, my relationships. all is changing. I'm just realizing so much - in an effort to heal - in an effort to get better. maybe I shouldn't judge, mabye the blogs that i have read or the lives I have watched maybe they are not fake. maybe they are trying - wanting it all to work to be perfect - to get better. That is what I have wanted. I would, with all the tenacity I could muster, wake up, plant my feet firm in my day and then in one movemet, one word or phrase or phone call or anything it would all fall to pieces - then I would try again and again and again. sometimes trying just isn't enough. the most valuable thing I have learned in the past month is this... fixing isn't it. we don't need to be fixed. we don't need to fix each other. we need to have compasion and grace and love for ourselves and for others.

so that is my growing for now...

here is kyle's growing...

He is 12 months old (WOW!), 8 months corrected. He is eating stage 3 baby food, crackers, cheerios, and drinks from a straw. He can sit up, roll over, is crawling (his own version anyway!), and chatting up a storm! We are working on fine motor skils and following one word directions. Pictures speak a thousand words! Soooo...

Kyle was a lion for halloween (which during RSV season consisted of dressing up on the day of jadon and jack's festival at school and taking pics on the back porch!)

We also had Luke Skywalker and a construction worker!

Kyle was so sleepy - he fell asleep in his mega saucer! He LOVES this and will dive out of your arms if you are standing over it! For therapy reasons he can only be in it about 20 min a day! I guess absense really does make the heart grow fonder!

Kyle after toast and jelly!

Kyle can drink out of a straw now!

Kyle eats ritz crackers, cheerios and graham crackers!

can you believe it?---john

First off,... can you believe that I am blogging again? Yes, this is the fist blog post I have posted since the NICU,... I had my reasons at the time,... but on today,... well-- I felt the necessity to get on here and be thankful.

I didn't expect last year about this time in the am that we would in just a few short hours meet kyle for the first time...after all, we were only 23 weeks and 4 days along,... who would have thought?  But, nevertheless, we did get to meet him... all 1 pound 3 ounces of him.

While he was not totally ready yet to meet us- he was still perfect.  perfect in every way.  10 micro fingers, .... 10 micro toes,... little finger nails and eyebrows,... perfect.

We listened to every doctor and every nurse very carefully.  The outcome looked incredibly grim--overwhelmingly horrific really.  Statistics and science were NOT on our side.  The only intervention would be God and God alone.  Medicine is great-don't get me wrong,... the practice

of applied sciences based largely on grand ideas and hypothesis but tested over time and proven in most cases to be beneficial to prolong or help life along, however,... This,... Kyle,... he was a different story.  Science and Medicine wasn't quite there yet.  Even though it had happened before,... kids made it out of this at such a young birthage and birthweight,... it was still less than 1% chance.

Enter the power of the holy spirit-- Enter the healing power and saving power of God.

I thank God for the life He not only has given Kyle, but for the incredible journey we have been on over the past year.  We have seen God do the supernatural before our eyes.  Kyle is doing AMAZING!  

I thank my wife for being so amazing with our kids and so amazing with Kyle.

I thank our family for being steady and assuring.  I thank so many of our closest friends who have stood by us through so so so much! I thank so many of the doctors, nurses, nurse practitioners that we grew so fond of and miss terribly.  I thank you who have prayed and continued to pray and keep up with Kyle and us--even when we aren't so good at keeping up with you.... (sorry!)

This last year has been a roller coaster...

we have made new friends and sadly lost some along the way I think due to the stress of it all,... but I will say,... I would do it all over again.  It is totally worth it to be able to know God in a way that most people choose not to believe,... and It is totally worth it in every way to have all 3 of my boys.

Kyle today is officially 1 year old!  WOW! 

God is so good.

I hope I haven't left anything/anyone out... but know this,... we are thankful and humbled on this day. 

Look Mom No Tubes (during the day)/

We went to the Med Center last thursday for appointments - I was shocked at what a mess it was from hurricane Ike down there still.  Traffic lights twisted and facing the wrong way - trees down everywhere - but none the less there was much traffic.  Hermann was eerily quiet - Some of the glass in the main entry way was damaged so the whole area was blocked off - maybe that made a difference.  But we made it to our appointments and got to visit some of our nurses from NICU also!  

Kyle has GREAT NEWS to report!!!!!  His high risk pedi took him off oxygen during the day!!!  I called john and was so excited - who cares about a jacked up house - kyle is off oxygen!!!! (during the day anyway!)  It is such a freedom  - during the day now he is like a regular baby to cary around - no giant tank to cart with you - no wires to get stuck and almost yank his face off (oops! j/k but other mom's with this you know what I mean!!)  just a regular boy!!!  We are excited - however kyle is far from a regular boy - she also said he was developmentally on target for a 7 month old!  He is really doing great!

I have a preemie mom question - since we have come off oxygen during the day - Kyle is a bit fussier, I though I noticed his mouth a bit purple on the inside like it used to get - he was fussing at the time but when he calmed down it went away - and his slow heart rate alarm has been going off about 3 times a night.  anytime I do spot checks during the day he his o2 saturation is 99....  any thoughts?  he is cutting a tooth right now so that really could be the fussiness - but has anyone else noticed any of this when weaning?  My doctors seems to care mostly about the numbers so they are not concerned but I am just wondering what other mom's are noticing.

Then we went to Dr. Hitner b/c one pupil is larger than the other and one eye opening seems larger than the other at times too.  Kyle's enlarged ventricle and PVL is on his left side near some optical nerves so I guess checking on this stuff stays in the front of my mind.  She checked him all out - dilated and all!  Kyle's eyes are perfect she says - no nearsightedness, no glasses needed, no ROP, no disease - perfect.  and the best news is he looks so good she doesn't even want to see him again until he is 4!

So 2 GREAT - EVEN MORE THAN GREAT - appointments in one day.

Occupational Therapy resumed  this week (after Ike) and we mostly worked on feeding.  Kyle still could care less about the bottle. he takes about 2 ounces each feeding - but he love his food!  Now I say that and last night he drank his whole 6 ounces at dinner.  anyway - his doctors are not too concerned about this b/c he is gaining weight and likes to eat baby food.  We have had the gagging problem that sometimes ends up in full blown vomiting.  and as the speech therapist pointed out I really do feel like it has to do with textures and when any texture - thicker cereal, a small chunk, hits the back of his throat he gags.  once he gets used to it he does better.  Our OT today suggested using an oral tool or baby tooth brush before we eat to get his mouth ready and used to something being in it.  Then if I am feeding him green beans baby food - mash up 2 green beans and mix it with the container.  then have some water - b/c strange enough... he does not gag on that - most babies I know really get choked up on water!  he drinks water from a cup (if I hold it) very well.  and if he starts to get gaged on the food offer some water to get the pieces of food down his throat.

this worked great - kyle made it through a whole meal with some texture with no vomiting!!!  This is a first.  He did gag several times but each time I would either distract him or give him a sip of water.  The distraction idea was interesting - b/c the signal (or lack of signal or immature signal) comes from his brain that causes the gag when I would distract him we was able to swallow.  I'm sure I am butchering that philosophy but my point is that it worked and our OT is brilliant!  We will be doing this 2 meals a day until he gets used to textures and then move to 3.

You can also see some of these motor planning and coordination things in kyle's play - he may respond delayed or show on his facial expression that he understands but actions maybe slower to follow.  His movements are still very gross motor rather than moving to some fine motor. Meaning his motor planning and coordination is still a bit immature.  

Kyle is doing well with the crawling position.  Previously if you lifted his lower torso off the ground his legs would still stick straight out - he prefered to stay in extension.  This can be a sign of tightness - CP.  But for kyle they just thought it to be lack of time in the womb.  when term babies are in the womb all curled up and pushing against mom - kyle was laid out flat in an incubator so he did not develop the same way.  So now after several weeks of working on this when you lift his tummy off the ground he pulls his knees up under him and 2 days ago for the first time he stayed that way when I let go of his tummy!  He is making good progress.  

We are working on some motor planning now - setting a toy off to his side and encouraging him to lean over where he has to hold himself up and get the toy.  we are also working on putting objects in a bucket, the feeding, crawling position, signing, moving from sitting to tummy, and turning on his tummy - like to look for a toy or get to a toy that is beside him instead of in front of him!

so lots going on - all good!!!!  our house is being gutted now - we did meet our insurance guy - he is nice.  and we found a water extraction company that will help us get the water out of our furniture and make decisions for furniture regarding what is salvageable.  So as soon as power comes back we can get going on this.  I think we have also hired a contractor - he seems nice too!

We have moved into my moms and for now have decided to stay there - all kyle's therapies and home medical companies have been moved so until we get the final word on where we can live and what they will approve - we are staying put - we hope to stay put for the whole time.

AND we got word from this contractor that he would like to have us back our house by christmas!!!!!!

YEA!

First Day of Kindergarten!

The first day photo

The greeting from his teacher!

the family photo - taken by the teacher!

the hug!

the departure!

a bit of hesitation!

a bit more hesitation - (this is his nervous look)

Jack - even more hesitant (it takes him a few times to settle in).

After this photo came the crying and sobbing!

Kyle was thinking - uhhhh  - tell me your not leaving me too?!?!

Still thankful... working on not being frustrated! :)

Before I update - I must vent one thing... Learning that stuff and things aren't important is nothing compared to being nice to an insurance person!  I have not met one neighborly person yet - you know the commercial.... like a good neighbor, state farm is there!  Not so much what is going on.  And I get everyone is stressed a bit right now - but I had 7 separate conversations with State Farm insurance reps on tuesday and none of them matched on their answers to my questions or suggestions on how to move forward.

Anyway - we have so much to do - we have taken pictures of all the damage - we have to list every item that was damaged, where we bought it, how much we paid, how much it would cost today, and how long I have had it.  to put this into perspective a bit - the only rooms with out water damage were 1/2 the kitchen, laundry room, office we think, and entry way.  All living room and bedroom furniture and most all in those rooms is "unlivable" that is what the insurance people call it!

We have to find temp housing and I found out today the closest ones they have to offer are in Katy - not so much going to work.  Kyle still averages about 4 visits a week - in fact this week - we still will make 3 visits and we are getting that in the last 2 days of the week and we cancelled two due to hurricane Ike.

So for now we are at the parent's casa - moving much of our salvageable stuff to storage.  We met with a state farm person late today and she was really nice!  Not sure if we will agree on what is "damaged"or not but she was really nice and that was refreshing.

Now that I am done complaining.... (and I do feel better!)  

Kyle heads to Dr. Hitner tomorrow to have his eye checked.  We also go to the high risk pedi tomorrow for a check up.

the floor in Kyle's room

Kyle's ceiling... and roof... and well sky too!

Jadon and Jack's Room

Jadon and Jack's "used to be" bunk beds

Jadon and Jack's Room

John and Kelly's ceiling

John and Kelly's room

Thankful...

I ended a long afternoon today with a friend asking me... "Well... Kelly, can you say you are thankful?"

Yes... I am thankful!  I am so thankful.

My whole family is safe.  Unfortunately our home did not do as well.  We have 4 trees on (or in) our home.   When  friend called to tell us our home was damaged i never expected what I saw when we got there.  I am not sure even how to describe it.  I'll upload some pics when I can.  For now we are trying to salvage what we can.  most furniture is soaked ... mattresses.... all walls but one I can think of...

all for now...  our internet is off and on.

Kyle is doing fine - we are all doing fine.  Lots of work to do... but seriously... here is what is in the front of my mind...

it is stuff.... just stuff....  money and stuff are things of this world... they just don't matter.  

Ike is on his way.

Well... it is official. Kyle will ride out his first TX hurricane this weekend. We have all the necessary supplies - generator, oxygen, battery back up baby monitors, extra tubing, tons of baby food, formula and water. We will be in Conroe (at my mom's house) for the storm. Conroe will take the same hit as the woodlands but Pops and Dedy have a huge generator that will keep kyle's ( and let's admit it... mine too) life running just as it should. Might be a little crowded over there with the 14 other family members but we are going to make it like a party!

I don't have any idea how bad it will be or if it will be bad at all. You know we did all this several years ago when I was pregnant with Jack and the hurricane - thankfully - was a no show!

Either way we will be prepared.

Be praying over all the little lions that are still in the NICU and their mom's and dad's that will ride out this storm with so much extra on their plate. and pray blessings over all the nurses and doctors that are staying all night at the hospital to take care of everyone! and what a picture... teeny tiny forts (incubators) with teeny, tiny preemies being loaded onto rescue helicopters at UT Galveston to be moved to safety. I can't imagine what these mom's must feel today. God be with them in peace and speed in travel.

Father, watch over these children of yours.

You know if you weren't worried about the storm all it took was a trip to the grocery store to decide that maybe you should be - it was pretty crazy around here. But really it was amazing to see so many people caring about others and to see so many working together to keep everyone safe.

so our back yard is clean, cars in the garage, bags are packed, we are off in the morning :) -----