Kyle's NICU Story in Pictures

Saturday, March 29, 2008

ECI visit - Kelly

Luke 4:40 "When the sun was setting, the people brought to Jesus all who had various kinds of sickness, and laying his hands on each one, he healed them."

I have good news and great news!  I should have posted sooner but honestly - we have been having too much fun.  The weather has been good and our back yard is one of the coolest places to be! lots of toys, lots of water, lots of dirt and grass, lots of popsicles.  of course kyle is kind of on the sidelines for now - but he is enjoying the outdoors too!

good news first - I talked with a hospital Medicaid representative - the person who is actually over getting us coverage for the first 10 days of kyle's life.  I spoke to her - so I have her number, she is working on it and hoping to have it all accomplished (get this... ) before she leavers her job in a week.  Ya - i finally meet her, find her and get her to work on it and then she leaves....  but she says she is going to try and have our case finalized before she goes!!!!  we are almost there!  this is huge - not just in money but HOURS upon HOURS of frustration that will be out of my hair.  the medicaid thing is very beneficial though so the frustration is worth it.  I talked with the hospital rep when I was looking into all this friday (some of my hours on the phone for the medicaid stuff!) and she has become a friend of mine over our stay there - she is awesome - anyway, she was telling me what my insurance and medicaid have paid out to the hospital for kyle since his birth!  are you ready for this - BCBS (our ins) have paid over $714,000 for Kyle's stay and Medicaid has made 2 payments, one for over $500,000 and one over $250,000. Can you believe that?  anyway and this is just the hospital and nurses.  the nurse practitioners and doctors and all the add-ons he has seen are separate!  crazy.  anyway - provision - it has been huge!

okay - for the GREAT news!  we had our ECI visit - our first physical therapy one - actally we met with an occupational therapist.  She did kyle's evaluation and strangely enough for their reporting they will only allow the therapist to rate kyle for being 2 months corrected.  meaning instead of correcting for the 4 months and one week early that he was they can only give him 2 months.  so when the grade him he is being graded like he is a 3 month old instead of a 1 1/2 month old.  so basically don't panic when I see their notes.  (if that makes any sense - I have NO idea why they do it that way.) but anyway - I look at kyle like he is a 6 week old - not like he is 5 1/2 months old.  This is how we should gage his development.  So they evaluated him and he scored as follows:

If 100% is average:  87% cognitive, 93% communication, 85% social and emotional, 80% physical, 80% adaptive behavior.  BUT GET THIS.... this is for Kyle's birth age - meaning for a 5 1/2 month old!!!  so when you translate it to what it looks like for kyle - cognitive he is like a 1 month old, communication like a 3 month old (who knew as a member of the sherrill clan!), social-emotional like a 2 month old, physical like a 1 month old, and adaptive behavior like a 1 month old.  This was all really great news for me.  Kyle is very mildly behind in some areas and ahead in some areas according to their evaluation.  ECI will be seeing him once every other week for now!  

Thank you so much for those of you who are still praying for kyle and for me too.  ECI gave us some homework and Kyle is working hard everyday to achieve his milestones!  He is proving to be like jadon once again in that he likes his "homework". We have lots of fun!  His therapist says she does not see any major signs of CP right now either!

I will keep updating - this week we go to the high risk Pedi - we will see about the oxygen!  and next week is neurology and cardiology and hematology!  

We are praising God for Kyle's growth - everywhere I go I am meeting people that have been touched by Kyle's story (we are starting to venture out now!) and all of it is so encouraging to me.  thank you to all of you.

Wednesday, March 26, 2008

PMS & Medicaid - Kelly

let me just say - not a good combination, the PMS and dealing with Medicaid!  I do not know out of the 10 or so families that we got to know in the NICU and of the 1000s of families that have the benefit of Medicaid - how we got so messed up.  The hospital has it's theories - medicaid and SSI have thier theories but, who knew... neither one matches the other!

I would like to report that as of today, March 26th Medicaid adjusted their computers to show that Kyle does in fact live at home with us and not at the hospital.  It has only been 41 days since he came home.  It has only been one month since we sat in the SSI office and had to change this ourselves.  Again - of all the friends we met at Hermann - we are the only ones that had to go and in person change kyle's residential address from the hospital to home when he was discharged.

Now, why did we have to do this?  b/c there is a clinic that gives preemies the RSV shot (to help them not get RSV)  however they do not give shots to the babies that are still in the hospital.  and b/c of medicaid's inability to update in a timely manor they said we could not prove kyle was discharged!  ridiculous!  now, we could have paid $2200 cash to have the shot and not fuss with medicaid - but everyone that I talked with, the hospital (phone calls everyday), the clinic (whose hands were tied - so they say!), SSI (49 minute wait time on the phone and 35 minutes in person), medicaid office (38 minute wait time on the phone), medicaid advocate (82 minute wait time) - they all said "it's done - i'm not sure what the problem is", "it will be done soon", "call me back tomorrow"....

I could go on for days - but then I met a lady (I can't tell you how)  named Mrs. Anderson.  She worked and worked and worked and even she was supprised at the run around I had been given but today - 5 minutes before Kyle's shot - she had it done!

We were going to have to shell out the money today b/c it was the last day for Kyle to safely get the shot!  so 5 minutes before we were out $2000.  she came through!  Kyle wasn't so thrilled about the shot!  but we are - it will keep him well!  and to celebrate - the whole fam went to a restaurant on the way home - it was lunch at 3 pm so the place was empty - and kyle was covered the whole time - but still we were out.  I can't tell you how nice it was to eat chips and hot sauce!  it was fun getting a table for 5 too!  that was a first for us!

and finally the big news!!!!  Kyle is 9 pounds 13 ounces!  WOW!  I will post pics soon!

all that medicaid rambling just to say - Kyle is getting so big!

Saturday, March 22, 2008

Spring Cleaning - kelly

So I just read my own post.  I don't usually read them after I write them but today I went back and read yesterdays.  I'm a wreck.  I can't believe how hard this is to leave in the past.  WOW.  I'm glad the account is recorded and I want john to write down his account of that day so that we have it and then it is time to move on.  I guess I keep thinking it will be like a regular birth where I will one day forget all the pain and forget all the hurt and think it was great - you know how we do that with other births - you forget the hard part and only remember how great and amazing it was.  but it is not happening with this day.  anytime I get near those memories I am consumed with hurt, fear, regret, guilt.  and the main reason I type this is not for me but is for you - who ever you are - the mom that is desperately searching the internet tonight wondering if there is someone else out there like you.  Someone that hurts like you do, someone that can fix your feelings or make you feel like you are not so alone.  I guess I say to you that you have found one.  BUT it is not right to feel this way - I guess who's to say what is right but it is not healthy.  it doesn't make us a better mom or woman or wife.  it tears us down not builds us up.  and as I am typing these things I am feeling how much easier it is to say this than to do it.  so one more reminder to myself and to you - when you hear this whisper - the regret or guilt - speak truth louder.  The truth is that God loves you and your child.  whether your child lives or not, is healed or not, achieves a goal today or not, gets sick today or not.  The truth is that God is right and merciful and full of love and compassion.  I don't know why so many of us have been given the wrong picture of what this looks like.  why so many of us think this looks like us getting our way.  (we pray and God does it)  that might just be the strangest statement ever made!)

anyway - rambling thoughts from me tonight - I'm just fighting and struggling to stay focused, stay looking forward.  I don't want to live in defeat b/c I don't understand something that I'm sure I will never understand (that is biblical)  and not live in regret every time I remember.

I just found out a friend of mine is pregnant.  I will not let the enemy use fear from my memories to suffocate the joy this baby is already radiating from it's spirit- it's beautiful spirit.

Friday, March 21, 2008

The Way it all happened Part 2 - Kelly

So finally - Part 2... 

So I left for the doctor - I did take the time to put on mascara and earrings - 2 things we should never leave the house without - and headed out the door.  I called my very best friend becky who lives in colorado that I have been best friends with since I was 12 and there is no one else on the whole earth like her or nearly as cool as her and my husband only wishes he was as cool as her and ....  (that was an inside joke - but for real, our friendship is hard to put into words.  she knows me completely inside and out; good stuff and bad stuff; real and fake stuff; and she totally not only accepts me but loves me.  I don't know many people that have a friendship where you do not EVER have to think even once about how your looks, your ideas, your crappy selfish tendencies will affect what they think about you - that is this friendship.  No need to impress, no need to be anything other than what you see is what you get that day!  and she loves me.  honestly we act like 7th graders when we are together and we think it's funny - our husbands just stare in disbelief when we get together! - and when we do take our kids to the zoo and push them around in strollers and sip diet coke and act like adults - we laugh b/c it is so crazy that we are moms!) anyway - wow - that was a long aside... back to the story - I called becky on my way to the doctor to gripe about how I was probably not going to get to work out that day! and how annoying it would be to get put on bed rest.  and of course she let me complain and agreed with me - neither one of us ever believing that I could be in labor.  but the closer I got to the Dr. Ritter's office the more the pain would come and go.  By the time I got there I did NOT feel very good.  So I went in and signed in and told the front desk that I had called ahead and the nurse knew I was coming...

I have to pause and say - even typing this gives me a nauseating feeling in my stomach, an ache in the top of my chest and it makes my ears and neck hot.  This and any memory near this date still make me so upset.  Earlier today I was working on some volunteer work I do for 220 ministries and I saw an email that I sent out on Oct 19th suggesting that we meet over the phone on tuesday.  I never met him b/c Kyle was born monday.  This memory, seeing that email - it makes this strange hurt come back all over again.  It is regret - If I had only... I could list one hundred statements right here.  Things would be so different.  anytime I think of anything that takes me back to that date... uhhhh.  I must continue to ask the Lord to take this from me.

anway - I told her I was feeling even worse and asked if I could go back.  she said to take a seat and they nurse would be right out to get me.  I'm sure as I walked off she was thinking "drama queeen."  But I am just the opposite when it comes to crisis.  I get really calm.  I don't want anyone to think I am being obnoxious or overbearing - I was this way when Jadon was born and no one at the hospital believed I was in labor - I was dilated to a 6 then.  so I sat down not wanting to make a scene b/c what if I was fine?!  so the nurse calls me back pretty quick and I tell her in the room that I have not been feeling very good and then this a.m. I was spotting.and that I was probably crazy but the pain was in my back and was coming and going almost like contractions.  she left the room and brought back the stuff that I should drink the next time I come in (that nasty orange stuff) and so I am thinking - I'm fine - no one else seems worried.  So she had me go down the hall and get a urine sample in a cup.  so I did after this I was really starting to hurt bad.  So I took the sample back and told the nurse that my pains were really starting to worse.  When she noticed the amount of blood in the cup she went ahead and got Dr. Ritter to come check me.

aside AGAIN - this is really harder to relive than I thought - I am really having to take a time out from remembering.  My stomach is in knots and it just brings back floods of tears.  I guess I haven't relived it in this much detail before.  If I had just thrown a fit or demanded to see Dr. Ritter or even acted like those pregnant people you see in the movies instead of trying to keep my cool and assume I was fine.  assume my baby was fine.  I just keep thinking if I had spoken up louder... something.  maybe it would have all been different.  ahhhhhhh!  Then I just go back further - If I had gotten up the first time and not laid back down.  If I had rushed out the door faster.  If I had called over the weekend or the week before.  These thoughts can be all consuming - like a weight on my chest that gets heavier with every thought - or should I say every whisper.  These thoughts must be from the enemy - from satan - from evil.  The truth is and I'm typing this out-loud.  I am the mother God chose for Kyle.  God created Kyle in his image.  He is glorified in Him.  and Kyle is being used by Him.

I have known Dr. Ritter for some time.  I was actually referred to him when I got married and needed to start birth control.  I remember going to him when we wanted to start getting pregnant.  I remember when he told me we were pregnant with Jadon.  He delivered Jadon.  I remember his encouragement after Jadon was born when I was having such a hard time emotionally.  He delivered Jack.  He has cared for me, from my children and it is obvious he cares for our whole family.  I have known him over 8 years.  So when he looked at me after he checked me - I knew something was not right.  He said "You are fully dilated, 100% effaced, your going to have to deliver".  I asked him "can't you stitch me up, put my legs in the air, something?"  He said that my cervix was gone - there was nothing to stitch.  I asked him the question... do babies at 23 weeks make it?  Do they live?   He said, not usually.  His face was FILLED with compassion.  Then he moved into fast gear!  He got an ultrasound to see which way the baby (I say that b/c Kyle was not named Kyle yet) was facing.  I could see him - I could hear his heart.  That was the moment it all became too real and too hard.  He was perfect, healthy and happy.  My body just could not hold him.  He was safe and soon, he would be dead - so I thought.  Dr. Ritter then left the room to call the hospital - this is when I called john.  i told him that the baby was fine but that I was going to have to deliver and that the baby would not make it.  I lost it - couldn't talk - just cry.  John just said I'm on my way and we hung up.

He was actually just pulling up to the school to drop off the boys - Son Kids Christian Preschool is where they go.  I have never and will never find another program this amazing for my children!  These people are priceless!  Their ideas are creative and hands on, the staff is loving and kind, their program is purposeful in everything they do!  We LOVE this school and all the staff!  As john pulled up it is like the Lord has some of the staff just standing out front and john said he threw the boys at them and said something is wrong - kelly is in labor - I have to go.  or something like that!  God worked it out.

Back at the doctor's office I called becky back - remember we were chatting about how obnoxious bed rest would have been - I could barely talk and I told her I was going to deliver and with out even taking a breath she said "Kelly he is going to be okay.  babies can make it."  I went from being confused by what she was saying to believing her in seconds.  I had not stopped to think that he could live...  I didn't even know what to do with that thought.  Becky prayed.

Then my next call was to find shauna.  she lives in germany - I knew the holy spirit in her would groan on my behalf.  I called her mom and within minutes shauna was calling my cell.  She said the same thing becky did - that he would be okay.  I didn't even question them I just held on tot their hope as I tried to muster some of mine.  when shauna asked what I needed it just came out - "for you to get here".  I didn't even know what I was asking - I don't mean in the way that I was asking alot of her - I mean really - the words were just coming out.

Dr. Ritter came back in and said that he spoke with the neonatologist nurse practitioner over at The Woodlands Herman Memorial and she wanted to try.  TRY I thought - you mean he CAN live?!  He said we need to do a C-section that will be his best chance.  the nurse told me that his truck was being pulled around we could not wait for an ambulance.  he asked me if I had any questions - - - - questions?  I was in shock I think - the only one I had was I wanted to know if he would be doing the surgery.  He said "Yes - I'll be doing the surgery."  and I said, let's go.  just then john pulled up so they put me in the Yukon and misty, Dr Ritter's nurse, met us over at the hospital and took me straight in.  I heard her tell the nurse when we got to the desk that i was fully dilated, fully effaced with bag bulging.  Well, I knew what that meant.  it meant that we were about to deliver.

The admit process was kind of a blur.  I do know we had one nurse that kept asking for my last name (like 3 times) and my social and if we had a car seat.  I think she might have been new.  John went to get someone else and the nurse we got then was great - she got us straight in.  

John talked to me about naming the baby.  we had been going back and forth about naming our little boy and we would write in wipe off markers on our mirror wars about what names we wanted.  jokingly of course (not me though!)  so he said we could name him Klien - that is what I wanted to name him - but I said no I wanted him to like the name too.  Then I told him that as I was praying for our baby through they whirlwind of  day so far I kept feeling the name kyle.  which we had talked about but not decided on or anything.  John was convinced that I really liked the name klien and wanted me to get to name our son.  we tabled it b/c anesthesia came to talk with me and he said we did not have time for an epidural that they would intubate me and put me under.  but they did not want that to get to the baby so they would put me under right before they cut.  NICE.  they told me that when i woke up john would not be there b/c he would be with the baby.  

so we get into the surgery room - it was cold.  I remember them giving me something they said would make my eyes blurry.  it did.  I remember the nurses counting tools.  I remember they anesthesiologist say I would feel a prick in my neck and then I would go to sleep.  I did feel it and was soon asleep.

What I was told is that they doctors got kyle out with in seconds.  I remember waking up b/c I couldn't breath, I was gasping for breath.  what I woke up to was them extubating me.  I have never felt pain like I did then.  They kept saying to take deep breaths and I was trying but I was shaking so bad and I can't describe how bad shaking hurt in my gut that had just been cut open.  I later found out that unlike an epidural where you can go straight into your morphine - they had to get me to start breathing on my own and wake up before they could give the morphine.  so when I woke up I was in pain like I have never felt before.  It was so bad I couldn't speak.  this is from the same person who was dilated to a 10 and 100% effaced and not in much pain.  the one who with jadon was dilated to a 6 and walking around and an 8 before my epidural.  I just needed to breathe.  So I would breathe in and out and I remember people talking to me and it was like it took energy to listen b/c I just needed them to be quiet!  then I could control the breathing and I seemed to stop shaking so bad.  but as soon as someone would talk - and I remember there being lots of people in there which I thought was strange.   all I could say was hurt.  I kept saying that and they let me know I needed to wait a few more minutes and then I could have some medicine.  I kept saying "hurt".  that is all I could get out. 
but then I noticed john.  i remembered that if he was there than our baby had not lived.  I couldn't ask.  I was afraid to know - I knew physically I could not stand the pain of crying - I hurt soooo bad.  so for right then - I didn't want to know.
Then he said something - about the baby (it is so hard for me to call him that - he is kyle to me!)  anyway - I was shocked - I remember looking at him - still couldn't really talk.  I knew they were working on him - he was alive!
The transport team was called from Hermann Children's hospital and they came by ambulance - they could not fly that day -the sky was green and stormy.  The neonatal transport team only comes once the baby is viable.  then they pack him up and get him to Hermann.  They came by my room.  Sherry and Angela - they were so kind - angela was knew and so sherry would prompt her what to tell me about kyle.  they let me touch him. and spend about 5 minutes talking to him - we prayed over him and then just before he left... they asked if he had a name!  I couldn't let him leave without a name - so john looked at me and then told the nurses - his name is Kyle.  We said goodbye to Kyle - I knew I wouldn't see him for a few days.

Soon they gave me morphine and I went loopy.  I thought things were going to be fine - I suggested that john go ahead and leave town that weekend for work and I really thought kyle was going to do so well we would be home in a week or two.  I was on drugs!

so there was no neonatologist giving me all kinds of statistics and then me having to decide if we wanted them to try and save kyle.  it all went too fast.  I'm thankful for this.  I never had to hear with my ears and store in my mind all the horrible things they said to john about kyle's chances.

and that was kyle's birthday.  oh - i forgot to mention this was my mom's birthday too.  WOW.

Thursday, March 20, 2008

Eye Doctor Today - Kelly

Psalm 145:1  -  I will exalt you, my God the King; I will praise your name for ever and ever.

Kyle had is eye doctor appointment today.  Dr. Hitner again said that Kyle's eyes were perfect. She said his vessels had grown all the way out through stage 3 and his retina is completely attached!  She said he should be checked when he is 2, that he might later be nearsighted.  I was so excited that I forgot to ask why she thought that.  I am not sure if I even care - I was so excited that his eyes were perfect!  she had a resident with her today and so she was explaining to the resident about Kyle's history and she said she had never seen a 23 weeker like Kyle with perfect eyes.  and as she left the room she said to the resident "I'm not sure how he skated by"  I quickly tried to throw in "it is b/c of God".  I'm not even sure if she heard me.

her not hearing me reminded me of something I am learning.  God is glorified.  God is glorified in Kyle.  God is glorified not b/c I mention to many that I prayed for kyle's eyes and they are perfect.  God is just glorified in Kyle and in his eyes.

I also prayed for Kyle to not have a brain bleed, he did, then I prayed for it not to get worse, it did, then I prayed for a miracle - that the MRI would miraculously be "normal".  I thought, okay God - I couldn't have set it up any better for you to be glorified.  kyle has a need, thousands, literally thousands are praying and even more are watching, so now when you come through and heal kyle miraculously, everyone will raise their hands in praise, know you "DID IT" and you will be glorified.  sounds good huh!?

well the MRI wasn't normal.  and you know what I am learning?  God is glorified.  Kyle is perfect - perfectly created by his father, HIS GOD who is glorified b/c of him.  I am learning that his ways are not my ways and even when God doesn't do what is on our to do list that we offer up in prayer - he is still glorified.  I am learning so much about God that i did not know before but the strange part is that as I am learning I am still not understanding.  I suppose that comes in time.

I do give praise to God for today - for kyle's beautiful eyes.

Sunday, March 16, 2008

Milestone Update - Kelly

Isaiah 59:1 "Surely the arm of the lord is not too short to save, nor his ear too dull to hear."

this verse and another one I shared are from someone on the blog - they were sent so timely.

I will finish "How it all started - Part 2" another night - hopefully tomorrow.  but tonight I have to update on kyle!  He is doing sooo great!  but first...
first before I update - I am letting my 2 year old, jack, eat a pizza dinner while watching thomas the train - special night here - we are kicking off spring break.  Since Kyle can't leave the house yet we are having to get creative with making it a "fun" week.  that is something that is a big deal to me - I want my kids to grow up with that "remember that spring break we..." and I want them to feel the difference between holidays and regular days - you know!  anyway - I digress.  my point was about thomas the train.  ummmmm - have any of you ever heard james talk - on the cartoon?  I mean heard the sound of his voice?  anyway...
So updates:
I have a book that I got when jadon was born that is called "Your Baby's First Year week by week" and I love it.  It gives you milestones physically, socially, mentally and also gives you great info that you might not know as a first time mom and also give you ideas on games to "play" with baby each progressing week.  just a cool book to have.
anyway - Kyle has meet 3 milestones so far and is on track for being a 1 month old baby - which is his corrected age as of yesterday!
He can hold his head up when held at an incline for several seconds and turn his head from left to right.  Kyle can pick his head up when flat on his belly and turn his head from left to right! (I thought this one was really cool).
He can track an object with his eyes as the object moves.  and my favorite - He is cooing.  not to mimic you yet but on his own he will coo and talk a little bit.  I LOVE IT!
He is really progressing well.  He continues to grow and is now taking 120 cc at each feeding.  this is the equivalent to 4 oz. - again right on target for a one month old.  He weighs probably about 8 1/2 pounds now but still wears clothes that are the "up to 7 pounds".  in fact tonight he was decked out in Astros gear  in honor of the countdown till opening day!

The pic below is of an astros hat that jadon bought for kyle for christmas.  We were on one of my first outings since kyle was born. One sunday morning I was at home with jadon and jack while john was a church.  I decided we would go and let the boys pick out gifts for dad.  Jadon wanted to get john and astros hat! so we go to the hat store and jadon sees this tiny hat and yells out MOM we could get that for Kyle.  so we buy it and the "kid" working the counter says - "this hat won't fit a baby m'am."  and I said (wanting him to drop it - this is just november - still a rough period for us) "well, he was a preemie."  and he says "uh, it won't even fit a preemie." and so I said "well, he was born pretty tiny." and he says, "It is just a decoration - there is no way this hat is going to fit a baby.  I just don't want you to be disappointed."  that was about all i could take so I quietly bought it, left the store and had my break down right there in the mall.  we went home and I decided that I was not yet ready for public or regular people yet.
anyway - all that to say - the hat fit.  but i never got around to taking a pic of it on his head!  can you believe that - all the time I was there... but I can't explain it unless you have lived it.  all the time in the world goes by in a second and an eternity when you are there.  fortunately, kyle did outgrow the hat quickly!  so to give perspective I took this picture with jadon's matching hat - he is 5 years old.  this is a fitted kids - size is Youth.
Kyle's hat is a fitted "decoration" hat that measures 4 1/4 inches.

Thursday, March 13, 2008

The way it all happened Part 1- Kelly

"The Wicked Flee when no one pursues, but the righteous are as bold as a lion."  Prov. 28:1

looking back I would have known something was wrong.  this must be where the guilt and "if only"s comes from.  The earliest memory I had was the wednesday before kyle was born.  I was in my kickboxing class (don't laugh) and had just finished.  I was unusually worn out.  nothing big - just tired.  this persisted for several days.  I chalked it up to being pregnant and having 2 other active boys.  so did everyone else.  The next day was thursday - we had some friends over that night to play monopoly (again - don't laugh - it's fun!) - I was having Braxton-Hicks contractions - so I thought - and honestly probably was but just thought I should drink more water (dehydration can make you have them, they can also be completely normal).  I was even fussing at john b/c I didn't think that he believed me that I was having them.  (girls!) Then the next day was friday - guys might want to skip ahead a few lines - I had an unusual amount of discharge all day.  - don't get mad at me... I told you to skip ahead!!  I even described it to a friend that if I didn't know better I would have thought I lost my mucous plug.
seriously! - %^&W!!$%#%!@)$ - I should have not taken everything so lightly.  but I didn't want to page my doctor when I had this same amount of discharge with other pregnancies and went in b/c I thought my water was leaking and been fine.  also ask anyone who had ever been pregnant - you leak.  why am i trying so hard to justify this to myself!!!!!!!!!!!!
anyway - the next day the discharge was better and then sunday I wen to my nephew's b-day party in huntsville.  When I go there John's sister always cooks great food!  nothing fancy but she doesn't hold back - if you have hot dogs you get it with all the trimmings and if we have cake we get ice cream too!  Plus almost anytime we go up she has made us brownies or she or john's mom has made a lady bird cake!  [if you do not know what this is.... save yourself! and find out - it is amazing.  anyway - so I like to eat when I am up there!!!  so I had pizza at the party, soda, came home to a hot dog dinner, complete with chips and beans!  and then moved on to birthday cake and ice cream but later had some of the lady bird cake!  like i said - it is heaven!
one more strange thing for that night - I was so spent - could not move and even had john bath all the kids with his sister b/c I just couldn't do it.  I laid on the couch for the rest of the night.  I did not feel sick just really tired and ache in my shoulders.
so you can see why i woke monday morning and thought it was completely normal to have some back pain and feel like i needed to poop!

I went back to bed and then was up 30 minutes later and was bleeding just a bit.  I had already planned on calling Dr. Ritter that day b/c I thought I might have a virus that john had or have some sinus infection b/c I was feeling so cruddy!  so I told john I was just going to take the boys to school and then go on over to his office.  he said I should just go and he would take the boys to school (mother's day out!)

and I will stop on that note b/c kyle is finally asleep.  and I am headed to bed.  that little turkey - or lion! - he slept so good last night while I was hanging out with friends.  so I got to bed about 1:45 am.  and he was up at 3 am to eat.  not so bad b/c I took Claritin D which helps me wake up easy and function - and I was expecting him to get up and eat about then.  but then I was expecting him to go back to sleep!  he didn't  - he tooted for about 3 hours straight!  So finally I go make him his next bottle at 6 am and he is asleep when I get back with it!  So i set it aside thinking he will wake up any minute - nope - and jack was up at 6:30 ready to conquer the day! - so I am tired tonight.

and in just the time I typed that - he is awake again!  let's all pray for no gassiness and for sleep!

Wednesday, March 12, 2008

Focusing Today - Kelly

Hebrews 11:1
Now faith is the substance of things hoped for, the evidence of things not seen.  

I had a great day today - thank you so much for those praying for me today.  wednesday night has become a hang out night for me and my girl friends!  It used to be the night they came over to clean my house and do my laundry and put my kids to bed.  when I found out they were hanging out and drinking coffee with out me (when I was at the hospital) I started trying to arrange my schedule where i would come home at a decent time on those nights and hang out.  Now that I am home (still on house arrest!) I SOOO much look forward to Wednesday nights.   John is always at work so we just have girl time.  I am so truly blessed by God - and I really don't throw that word around lightly anymore - they help me laugh and see the joy in my everyday regular stuff.  they don't hold back what they say or their opinions and they accept me even for the way i have changed over the past few months.  tonight we added junk food!  ahahhhhhhh- don't anyone tell Lynn!  I'm going hard core on the diet TOMORROW - so I'll have some ice cream right when I am done with this.  all this to say - I adore my friends.

and as a side note - my children were wonderful today.  we had so much fun.  I spoke to one of my friends the night of the bad doc visit and she reminded me about 2 year olds.  I was trying to discipline jack instead of train him.  jadon is in discipline age but jack has missed out on the training - and one thing now I can attest to - if you do not train them ... discipline does not work.  Jack is responding great, even in just 2 days! -  we even had a cleaning party - complete with music that would wake the neighbors and dancing as we pushed laundry baskets of toys from all over the house to their room.  YES i said baskets - you know john has been out of town so...

I spent much of today focusing - going well.  Thank you so much to all of you who sent resounding "get your head out" messages!  Your encouragement was perfect.  I have noticed several blogs that I like to check regularly (who knew - kelly the blog reader - I used to hate them!)  they start with scripture each day.  What a better way to focus and fight.

Jadon has this sword he got that says (when you hold down the button - which he does all day long! thank you carol!) THE SWORD OF THE SPIRIT WHICH IS THE WORD OF GOD!  I guess after the 800th time in two days I am getting the picture.

for today! my friend sent this to me:

Hebrews 11:1
Now faith is the substance of things hoped for, the evidence of things not seen.

this means so much more to me today than it ever has.  there is so much that I hope for and so much that is unseen to me.  My faith must increase.  I have told so many people that "truly the greatest gift the lord could ever give us is the gift of increasing our faith"  wow.  my turn i guess!

I am thinking of going back and telling the story of when kyle was born (from my perspective) - in my next few posts.

Tuesday, March 11, 2008

Hard Day - Kelly

Kyle is doing good - it's not his day that is hard.  I am really struggling.  I go from thinking that the tubes I have to drag around a pain and won't it be nice when they are gone.  and kyle looks at me and tracks the book or toy I am showing him and seems to be doing so great.  to .... ready... acting like a crazy person and searching the internet for any info on DEHSI and white matter loss in the brain and study after study of pre-term infants who have this or that and go on to do this or don't do that.  I look up words in medical dictionaries and then look up to realize I have wasted hours away I could be ... well... sleeping for one thing.

then last night I stumble to a website I have checked frequently and I find a mom - an amazing mom - that attends 8 therapy sessions a week for one of her sons.  she has picture after picture of him and video too and she speaks of how proud she is of him and his attitude and how hard he works and all I could think was how I am just sitting like I am mourning what might never be instead of fighting for this little lion that GOD entrusted to ME.  

what a wake up call - the other part is I go from listening to everyone tell me that he is going to be fine.  just fine.  and then I see other mom's well - just this one actually - who LOVES the lord and prays over her children very specifically and she works so hard for them - therapy after therapy and I realize - Him being "fine" may not come from all of these doc appointments and constant watching and working with him going away.  it may come from YES God healing him but I am learning that restoration doesn't always look like we want it to or what we think it might look like.

I get caught up in listening to people around me that have never been through this that want to speak life into me but it ends up making me doubt that I should be doing anything - it is like I get on board with them and think  - ya - it will be great when all this is back to normal.  

I have got to wake up, realize that the "normal" or "natural" or whatever sucks anyway; step back into the supernatural and FIGHT.

here is my first act in battle:  I Cor 10:15  - (my translation) "For the weapons of our warfare are mighty in God and useful for pulling down strongholds and casting down vain imagination."

-bring all of these thoughts into captivity.

Monday, March 10, 2008

Eating Apples - Kelly

Kyle is doing good - He was over 8 pounds today!  we had to go to the doctor b/c he has a cough that sounds very congested - this started friday night.  his lungs sound clear - but his breathing is pretty fast.  please be praying for Kyle that he can shake this!
Thanks for praying for kyle's hernia - it is doing fine.  it is easily reducible again and color looks good.  He has not been in pain or fussy since that one night.  we want this to keep up for 12 more weeks - this will be the end of may or beginning of june.  this is when they will feel comfortable doing the anesthesia.

okay - one more story and then on to the apples - OH MY GOODNESS! today I had to take kyle to the doctor, Dr. John, our pedi.  I had to jadon and jack with me b/c john is out of town and the only appointment they had was at 2:30 after I pick up the boys.  so i picked up the boys from school, fed kyle in the car and off to the pedi.  in packing up the diaper bag, warming the milk to eat in the car, hooking kyle up to the portable oxygen and getting the apnea monitor together... oh and kyle too - I forgot to bring a snack and action figures for the boys.  to keep them quiet during the appt.  with no time to go through sonic we headed there anyway.  i told them both - best behavior and we would head to sonic afterwards....

kicking, yelling, climbing, turning off the light, opening the door, hanging on the doctor, dumping out the book basket, throwing teddy grahms on the floor, whining, fit throwing, siting on the doctor's stool - then it was time to leave - running down the hall, tackling, screaming again, not listening, not obeying, hanging from the counter and feet on the wall, running into the parking lot, another fit, my really groovy diaper bag in the water puddle - did i forget to mention it was raining.  pants pulled down - spanking.

oh and me carrying, kyle , diaper bag, oxygen and monitor all while trying to keep kyle away from the coughing little girl checking out in front of us!

those are most of the things that went on.  I was so embarrassed!  by the end I was having a hard time even giving them instructions b/c they did not work - I was in shock i think.

so did we go to sonic?.... I DID!  and I got my diet coke b/c that is one of my two outings for the week while john is out of town - kyle can't leave the house or the car.  so i wanted my diet coke - so I had to explain to them why they were not getting anything - then we went home - bath, dinner, bed, stories (i can't take away reading! I'm a sucker!) and they went to bed.  at 6:30.

I can't believe MY kids acted that way!  uhhhhhh!  okay - on to the apple story.

who would have thought that eating apples could be such a different experience for different people.

Thursday, March 6, 2008

hernia crisis - Kelly

Well, today was crazy!  last night I mentioned that kyle was fussy.  really fussy.  well, he finally settled down and slept and went from 10 pm to 7:30 a.m. with out eating.  and at 7:30 am I had to wake him up to eat!  you might be thinking - great - lots of sleep!  but that is a little too long for a healthy 3 week old (corrected) to go with out food!  so I had decided that I would take him to Dr. John to see what he thought about the hernia - it has been getting so much bigger and I was concerned after kyle seemed in pain last night.  I have also had a hard time reducing it as of yesterday.  SO... just before I went I was changing kyle's diaper and I noticed a bruised looking spot underneath his scrotum; the very bottom of the hernia.  so I immediately went of to the office.  Dr. John thought we had better go get it checked but instead of making us go to the ER he called the surgeon's office and had him waiting for us when we got there.  Dr. Cox thought we were kind of entering into a gray area.  meaning - he does not want to do this surgery for THREE more months - buy he doesn't necessarily think we can manage it for that much longer.  Kyle seems to be having symptoms that the hernia is giving him problems but b/c of his age - they do not want to put him under anesthesia.  Prior to 55 weeks post conception - so 12 weeks from now for kyle - there is a greater risk of apnea and brady (slow heart rate) and therefore coming off the vent. and coming off well.  WE DO NOT WANT TO MESS WITH THIS.  

so please pray that Kyle's hernia troubles will subside.  specifically - he needs to poop.  also please pray for his lung function to keep getting better.  At the high risk clinic he was not saturating as high as they would like.  so please pray for this to get better.  

The irritability has slowed down, he has not vomited again, the surgeon was able to reduce his hernia - although is is getting more difficult and he felt like the bluish color was not strangulation of the intestine but some swelling and fluid.  So those thoughts were positive.

So for now we keep watching it very closely.  call into the doc's office tomorrow to make sure he has pooped and we will go from there hoping to make it to 12 weeks from now.

so crazy day - at 7:30 a.m. the day was normal.  at 12:30 I was driving 90 mph to the med center expecting emergency surgery.  and at 3:30 the day was normal again!  Thank you for your prayers - I must believe that once again we are interceding on kyle's behalf.

sorry - no pic tonight!  please keep praying!  and to those of you out there that are micro preemie mom's and you comment - please email me - I would love to be in touch!

Wednesday, March 5, 2008

tough night!

Kyle is having a rough time tonight.  all of the sudden he woke up at about 9:40 pm tonight crying.  I mean really crying and kyle really doesn't do this much.  actually he doesn't do THIS at all.  He cried almost non stop until about midnight.  finally he has worn himself out and is mostly asleep - he wakes up ever 3 minutes or so and whimpers or cries and then falls back to sleep.  You know I used to worry enough about my other two boys and now.... WOW... 
I don't get why my peace is so fleeting.  Today I felt so good - I had kyle at his doc appointment all by myself, this was after taking the other 2 to the doc just before kyle (that is another story for later!)  I was dressed, rested, had my son in a stroller and was out at the doc.  even drove by myself with him!  I was talking to john earlier telling him I just knew kyle was going to be okay.  Resting in the visions God has given to me for my boys.  Then we get to tonight.  kyle cries non stop.  My reaction - to need to reduce his inguinal (sp?) hernia, to check his soft spot.  one of the signs the his intestines are caught - screaming - they said it would hurt, then you let them know if it turns black!  "NO, REALLY!"  so I am worried - I don't want to wait till it turns black!  what if his screaming isn't gas - what if it is that.  Then I decide to check his soft spot and that is not so soft. well he is screaming - it probably shouldn't be soft when he is screaming.  but just monday we were at the high risk clinic.  You remember the one that didn't say much... well they did say when we were checking his head size that if we saw a change in how he has been since he came home.  ie) very fussy, and vomiting.  well, last night he vomited for the first time.  and tonight... fussy.  but he vomited after eating way more than he had before and then 2 hours later took another bottle (b/c he threw up the other one).  and today, he could be fussy from gas.
see what I mean about the fleeting peace.  and by the way if anyone wants to comment that i need to relax.  hmmmmm.... just leave your email address with that comment :) haha.
anyway  - again, it is like one minute I am coasting along, enjoying life.  then next - panic grips me.  I keep reminding myself - the faith of a mustard seed.  even when all the faith I can muster is surrounded by doubt - it is still enough for HIM.  

Please pray for Kyle tonight  - continue praying for him.  Please ask God with us to continue healing him.  to heal him completely in his mind, restore his brain, muscles, and lungs to perfection.  Please pray for good eating and wisdom for his pedi surg doctors as they prepare to correct his hernia.  Please pray for his lungs to strengthen so we can come off oxygen soon.  and for support still underneath our arms.  John described it like this the other night - that our friends who have helped us so much - it has felt like at times they just grab us under our arms and start to carry.  prayerfully, physically, emotionally.  This is all of you by the way - thank you.

some pics from today and yesterday - 
Don't they look alike?  Jadon is so proud that everyone says this!

This picture actually reminds me of jadon too - I have one of jadon after he was first born.  His cheeks and eyes were so big you really didn't notice anything else about him.  This pic reminds me of that!
Jadon took this pic of me and jack after lunch yesterday.  I love it!  Jadon is becoming quite the photographer.  Loves the camera!

Kyle is fussing again - off to hold and bounce and hold and bounce and hold and bounce!

Tuesday, March 4, 2008

It's been too long!

I can't believe I haven't posted since Feb 25th.  I really can't believe how fast that has gone by!  I used to get so frustrated when I was following a mom's blog and she didn't post for a while.  I felt desperate to know what was going on - I really was wanting to glean info from them and transfer it to kyle.  selfish I know.  anyway.....
well - kyle is 7lb 12 oz now!  WOW!  we went to the high risk doc - not so much impressed.  in fact of all the appointments the ONLY one that has been informative.... my pediatrician - not some high risk person that was appointed to me by a hospital but my pediatrician that cares for my other kids!  He is amazing.  Dr. Tony John!  He did his residency at Hermann Children's among other places - anyway - he knew all I was talking about with kyle - he had info for me to watch for and guidelines for Kyle's growth, he asked several questions and gave us some goals to move towards.  The others - well the cardiologist - I knew more than he did.  I'm sure he is a great doc but he wanted to know why we were there - he was not planning on doing a test that we were there for.  He only had part of kyle's discharge summary and so he had all his info about his heart wrong!  and then said he would do the test if we "wanted him to" then he said he would call with the results and never did so when I called in to get them faxed to me - his notes were wrong - his info about kyle had been written down wrong.
then we went to the high risk clinic.  they didn't say much either - thought I would get lots of questions answered here - I was really excited about it.  the nurse didn't know how to put on a pulse ox.  WOW.  the docs were cool but again - no news!
anyway - kyle is doing good!  maybe that is why there is no news!  He is growing and figuring out days and nights, thank goodness - not there yet but on our way!
one of the attending physicians from Hermann has been great and has been providing me with some info regarding kyle.  We have a physical therapist we will be going to when RSV season is over.  This woman owns a clinic, used to work in NICU, and is trained in neuro-developmental therapy.  and has tons of experience with preemies.  she is a perfect match for us right now.
we are also trying to get into see a world renown pediatric neurologist that is paired with BCM and TCU.  hopefully that will work out.
in the mean time - we play and read and sleep and eat!  He is facinated by jadon and jack - I have posted pics below.
as far as me - my thoughts... I think alot.  too much probably. not really worry, but think.  I wonder how and why God has chosen to do things the way he has.  I'm sure other parents wonder the same.
I was thinking last night about how I will never be the same again.  I notice my neighbors, pregnant, seems to not have a care in the world.  not every imagining that anything could be wrong in life.  When I notice this I get so jealous.  Or the mom at jadon's school that had her baby when i should have had kyle.  I see her and feel so much regret for that day I went into labor.  but i realize I will never be that person again.  I will never think of a preemie and think it is cute.  I will never drive past a hospital and not think of the people inside and how they must feel.  I will never assume God will do what I want him to do.  I will never, I pray I will never, forget the pain of others.
BUT I WANT TO so bad go back to before all this happened, back to the kelly that I was before - before I was changed.   I wonder what is different - what is different about me - I will never be the same.  and then I realize that what is gone is flesh - what is missing from me now that I want back ... it is flesh... security in life, health, flesh.  THAT is why it was all so painful - God is stripping away flesh.
john has a song - he wrote - that asks God to do this until all that remains is what He has reclaimed.   It is so different living ministry rather than doing ministry.
I included some pics!  enjoy - they are getting so  big!  

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!