Kyle's NICU Story in Pictures

Wednesday, January 30, 2008

4 Pounds 7 ounces!

Kyle's first try in the bouncy seat!

Kyle taking his bottle!
Kyle snoozing in his new room - Level 2!
It is hard to give you a perspective on how big he is - he loves to sleep on his tummy - we will have to stop that when he comes home!

I am crazy busy these days - I will catch up with my journaling - but I knew I could not show up to MDO tomorrow without pics of the little lion!  too cute huh!

Tuesday, January 29, 2008

I am so tired!

5 hours last night.  looking at 5 tonight.  90 miles per hour during the day.  54 things on the to do list.  but I am neglecting my journal - not my thoughts ... just my journal.  My "BFF"  (no for real... you are laughing but we have the james avery rings) is down from Colorado helping me out with life.  john is in Tennessee working this week so she came to hang out!  she is working her tail off and doesn't get to go see kyle b/c she has the sniffles!  she has flown down here 3 times since kyle was born.  2 times she has been a bit sick - not a big deal but sinus stuff.  and once she has gotten to see him.  But she still came - sick and all to help me - even though she doesn't get to see kyle!  amazing.  we have had a great time!  she plays with the boys (and her 6 month old daughter) all day and then after we get them to bed we moved jack into jadon's room  - all toys combined - all clothes combined - all anything combined into a 10x11 room.  bunk beds and all!  Their new room looks great!  Tonight we worked on Kyle's room - making it functional!  i guess we will get to make it look cute tomorrow!

in fact - back to being sleepy - it has taken me about 25 minutes to write this b/c i keep falling asleep! I will share my thoughts and wonderful stories soon.  John is working on some pics and video of him.  I will update more tomorrow.

Kyle is doing very well.  He eats from a bottle 3 times a day and the rest goes through his feeding tube.  he had very few brady's and de-sats today! today was a joy to spend with him.

sorry, so tired!

Saturday, January 26, 2008

A term baby - kelly

this is the phrase our nurses are starting to use.  "you know... now that he is term... " is what they are saying sometimes.  meaning - he should be acting like a newborn and the good news is HE IS!

I notice this more and more everyday!  yesterday, kyle ate 26 ccs at his feeding and today he ate 25 ccs at his feeding.  and so he takes the rest (38ccs total) through his tube.  This is not even b/c he tires out but b/c he only gets 30 minutes to try. This is with good reason.  who would have though about all the work it takes to eat.  Kyle has had one brady at the beginning of each try.  this is just him trying to get organized with the suck, swallow and breathe.  He doesn't have them after that.  He does de- sat some but always self recovers when we take the bottle out of his mouth.  I am having to watch him and try and learn to tell when he is needing a break without the monitors - harder than it sounds!  they stop him after 30 minutes b/c he can get really tired out and then have more bradys while he sleeps.  he can stop gaining weight b/c he is using so much energy to eat.  all the things we don't think about.

Kyle is doing so good that his NP decided he could take a bottle 2 times a day!  He is doing so great.  and I must say I LOVE feeding him.  He is so cute he sucks and swallows perfectly and then he gets to where he is going to fast and forgets to breathe - but he does so good that he will stop sucking and take 10 really quick breaths.  almost as if to say "this is soooooo good!"  It really is adorable.

Kyle LOVES to be held, he LOVES his paci, he LOVES to be swaddled.  He looks adorable!  today he was wearing a hat from a little bug outfit that has antennas on it!  :)

He got another echo friday.  we should have the results on monday or tuesday.  this will tell us more about the clot in his heart.  if it is in fact a clot, scar tissue, getting bigger or smaller, where in the heart it is and if this is a problem.  now sometimes they do come back and just look at you and say "we don't know" alot but I am hoping for information.

Kyle has his eye exam last wednesday again - he has NO ROP and NO plus disease.  This is also very unusual! He is doing great and you can really tell that he can see so much better now.  Dr. Hitner (world renown in her field) moved him to every other week check ups!  this is great news!

let's see - what else amazing can I say....  

oh  - jack today (he has been saying sentences now)  looked at me while we were both having a yogurt snack and said "lu you .... ma-ma"  the sweetest thing I heard all day.  kyle's burp at the end of his feeding runs a close second!

as far as me - there is so much on my plate right now that I really need to be doing 800 things other than journaling my thoughts - but....

God is changing me - continuing to restore I suppose.  I have been really struggling spiritually with modernized christianity and our perception of God.  I have been at a loss in prayer, confused by our christian works, and evaluating my thoughts to what I take in and pour out in ministry.

I think all these thoughts are beneficial and even from the Lord in my life but in my circumstances they have been enveloped in negativity.  The NICU is a hard place to be positive. not hard to stay positive on the outside b/c we can smile and ask about the other babies and want to stay positive and upbeat what some of us call "believing".  but it was pointed out to me tonight that my lines have been blurred in the difference between faith, hope, and well wishing.  all of this vs the spiritual gift of healing.  God's mercy.  God' glory.

The same prayers can't just roll off my tongue anymore.  The weren't empty then and they are not empty now but God is stretching me, painfully stretching.  I'll share more on this later - when my 2 year old doesn't have a birthday party the next day I need to get ready for!

point of today is - I have to smile again,  I need to be up and happy, I need to recognized where I am is ordained not orphaned.  I have got to fight this negative.  not with will power and not with focus - that won't work.  the blood of jesus has made me new.  clinging to that will work.  what God is doing even thought it hurts so bad i can't see straight, even though it brings confusion and guilt b/c it shouldn't hurt, even though I am angry, feel betrayed, alone, worry about those women that are hurting so much more than me tonight, EVEN THOUGH ALL THIS - I reconcile - it is of God.  It does glorify him.  I believe you God.  now would you help me with my unbelief.  

smiling of course.

Thursday, January 24, 2008

Jan 24th - Kelly

John blogged some tonight but he left the good news for me!  Kyle drank out of a bottle tonight for the first time!  The nurses warned me that he might brady and de-sat and choke and spit and his nurse even put a gown on incase she had to take him from me.

so you are probably wondering how he did....

HE DID GREAT!  he did brady once at the beginning trying to get organized in the suck, swallow, breathe routine. (this is actually a difficult task for preemies)  but then he realized that something was coming out and he LOVED IT!  He did so good.  His little eyes got SO big!  and he just looked at me!  his normal feeding is 38 ccs.  and in the 30 minutes they give him to try he ate 30 ccs!  and if you want to know how amazing that is a nurse in the room - Karla - who has been a nurse for several years said she has never seen a 23 weeker do that good!  Brandy was his nurse today and she was the one that kept telling us he was ready for this and boy was he!

I am obviously sooo excited.  I feel like this is a REALLY great step for Kyle.  Not just b/c he can eat but I feel like he is progressing well.  He is doing things that I remember jadon and jack doing when they were born.  this is so encouraging to me.

so back to the eating - Brandy put 15 ccs in a bottle and said she thought he would not even take all that but he sucked it dry!  and wanted more.  so we filled up another 15 ccs and he drank that too - then... I got to burp him - 3 months old and I finally get to feed and burp him!  and he did burp!  too cute!  and after the burp - he turned is head to the side like any diligent newborn and began to root on his blanket!  adorable!

John couldn't come with me today but he will be there tomorrow so we will get video and pics and just pretend it was his first time!

I am praying for a little boy across the way from Kyle - he is having a scary day.

Thursday -- Jan 24

Yesterday Jack turned 2 years old!  Believe it or not,... so somewhere around Oct 21, I was telling myself,... "ok,... Jack will turn two, then just about 20 days later, we will have a newborn...
boy, I had no idea that the very next day we would have a new born and on the 23 of January we would have them at 5, 2, and 3 months!  yikes.  My kiddos are some of the hippest kids you will ever meet, but FIVE, TWO AND THREE MONTHS?  HAVE WE SMOKED SOMETHING?
(sorry of all the baptists I just offended.)

So, yeah,... my time at the ol' children's memorial hermann has been cut dramatically as I am home most of the time trying to get as much work done on the  new CD (yes,... that was suppose to release last june)...(sorry if you pre-ordered like FOREVER ago... it is coming.)
AND,...ofcourse, there is 220.  I am working madly trying to secure locations for camps... one new location, one old one,... but that is coming together, so God willing, we will be doing 220 again twice this summer!  (hint to all those in ministry reading this... make sure you come)...
(that was a non subliminal (subliminal) plug... 
and the thing that is taking up most of my other time is keeping up with the 5 and 2 year old!
So, us dudes are trying our best to make lemons into lemonaid!  
Jack is getting more and more verbal every day.  He actually said a full sentence to jadon the other day... (through much frustration mind you) !  There was this determination in his voice as he said, "GIVE THAT TO ME... PLLEEEEZE."  haha... it was priceless.

Kyle is doing real well. Big news tonight.  I will let Kelly tell you all about it when she gets home to blog.   You will love it!  Thanks for reading, praying, and all you are doing.
We really do appreciate it all!  Please add 220 to your prayers.  Ask God to begin to prepare the hearts of those who are coming. Our theme this summer is timely.  I believe God is going to use it in a big way.  The themes always come from something God takes our family through or is going to take us through as we have learned in the past.  This year, the theme is RESTORED.
I pray, just as God is getting so much glory out of Kyle, that God will be glorified in the lives of His people seeking true restoration from many things-- idolatry, sin, hurt, brokenness, etc etc etc you fill in your blank.  Pray God fills both weeks of camp and 1 week of preteen camp.  Pray God sends the hearts and ears of those that realize their need for Him.  Pray that we can lead people where we have been on this road of restoration.

Blessings --


Wednesday, January 23, 2008

Three Months Old

... yesterday.  Kyle was 3 months old yesterday!  He is really doing great today.  this was day 3 on nasal cannula and he is at (mostly) 23% oxygen.  We were even talking about bottle feeding today!  as in ... the near future!  Kyle is ready - at least he thinks he is.  Tonight we watched kyle trying to nurse his sleeve, his hand, his paci and the air!  It just amazes me the way he is wakes up 10 minutes before it is time to eat and acts hungry!  all good signs to me!

I was thinking today just how strange my normal is now.  I think of Kyle as so big - my new friends come visit him and we talk about how big he is!  I have a 3 month old that weighs in at 4 pounds even!  I am so excited about our future with this little lion - our whole family really.  moving forward I think.

Tonight I got to spend some time sharing my heart with a friend.  something I haven't done in a long time.  It was good, very good.  I feel like maybe we are starting to see a light at the end of a tunnel!  Kyle is getting bigger and stronger everyday!  He is doing new things each day. Today he de-saturated less and even did fine while having his eyes dilated.  the nurses say they usually have bradys and all with this.  He did great! speaking of eyes - he still has no ROP, no Plus disease and his vessels are now medium to large and kyle has been moved to being checked every other week instead of every week!  from what I hear this is amazing and very unusual news for a 23 weeker.

Father - thank you for what you are teaching me.  all be it painful I am hopeful today that it will be beneficial.  yet so many questions still.  Thank you for miracles.

Day of Life... I don't have a clue!

It has been 2 days since I have written.  I have been meeting myself coming and going.  John has had it even harder.  but I am pleased to say Kyle is rocking right along!  He is still 4 lbs.  the reason is b/c he went to open crib he has been using calories to keep himself warm.  (who even things about that! - but it's true) and he has been doing it - keeping his temp well!  and so he is still 4 lbs even. today was his 3 month birthday (Jan 22nd) that is!  so 3 months and 4 lbs.  when I say it like that he seems little and not big - i guess it is all perspective.  he is doing good!  great even!  He is on nasal cannula again since monday at 8 a.m.!  He has been at 21% oxygen for most of this time (that is room air!) and sometimes goes up but has not been higher than 30%.  He is taking 36 cc s of milk.  you will not convince him that it enough though.  the other day he started rooting - where he turns his head to the side with mouth open in search of food.  he wakes up right near the 3 hour mark and starts rooting - then when you start his feeding and give him his paci he sucks away and then will open his mouth really wide like he wants the paci and shakes his head back and forth like he wants more or faster and he will hold his hands up by his face and pull at the paci!  

last night when we were bathing him he was rooting and found the palm of his hand.  he was trying so hard to suck whatever he could out of his hand.  this is pure instinct b/c he has never received food from sucking.  however when his primary nurse feeds him she will put one or two drops of milk in his mouth and he instantly starts trying to suck! I THINK all of these are great signs that he is progressing.  He is growing and developing as you think a 36 week gestation baby should.  in fact he is beginning to act like a term baby!  so that is great in my book - I am not sure medically what this means but I am encouraged.

Kyle now has a mobile to look at on his crib and a toy box under his bed.  He doesn't do much yet with them but he does look at the mobile he has been having great awake periods and he just looks at you with these great big eyes.  He will just sit and look and listen - then fall back to sleep. He is such a sweet baby!

I am pumping every two hours - after doing that for 14 days I went back to every 3 hours and got completely engorged again.  so after 48 hours of that I went back to every 2 hours and all was well!  this would be great if I pumped for 20 minutes and got 4 ounces but I pump for 20 to 30 minutes and get almost ONE OUNCE!  I think my boobs are broke!  anyway I am not sure if the lactation lady tricked me into this or not! haha or if my body really just needs to get rid of an once of milk every 2 hours to not be engorged!  hahahahaha!  and some say when I get Kyle "to the breast" (sorry keith but that is the term they use!) all will be better.  Well, I doubt that b/c I didn't like it with my others and they didn't get enough milk either and so Kyle will take a bottle!  I will keep pumping - my goal is until he gets home.  I would like to keep it up after that but depending on Kyle's need... I'll start using formula.  no doctor will tell me - ALL lactation consultants say I NEED to keep pumping.  All doctors say I "can" switch him and most moms do and I have done so good that most moms don't pump for this long.  but I can't find anyone who can tell me what I should do. I guess I will wait and my gut will tell me.  He is currently out eating me anyway - It takes 2 pumpings to get one feeding right now.  and b/c he is such a good eater this will only get worse.  some people say I need to take an herb called fenugreek - uh... for anyone that know me before when I took it with jack!!!! back combination - kelly, postpartum issues and fenugreek DO NOT MIX!  I met a girl at the NICU that had this same problem.  wierd.  comforting to know it was not just me!

I am really tired - john is probably even more tired.  He HAS to work right now, we trade off keeping the boys, I don't get to go to the hospital most days until 3 p.m. (so he can work during the business day) and so don't get there till 4 pm and I have to pump every 2 hours so I am staying till 10 or 11 pm just to get to spend 4 or 5 hours with kyle.  John has not gotten to see him in 4 days.  I hate this but we both feel like if only one can go I need to right now.  but I know what benefits I have read from john holding him.  john will get to go wed night - we have a sitter and so I will go at 3 pm and then john will go later.  we will have 2 cars down when we go and that is a pain too but what I'm realizing is I don't want to complain - well I do - I want to whine and cry and stomp my feet!  but I have my son - I have hope - I have 2 healthy kids at home.  some of my new friends do not.  I am trying to stay focused on the positive!  but literally it takes all of my energy to hope forward, focus on what needs to be attended to right in front of me, and love outward in the process.  maybe one day I will read this and it won't make sense... i don't know.

I keep reminding myself and I told john that as long as I know we will love each other when this is all over and all three of my kids will be safe and happy - then I know we can do this.  we are working like we have never worked before to not just salvage our family, ministry, relationships but try to see them grow through this.  some days ... like today.... I feel like we are making it.  Kyle is doing so good.  both our boys at home are sound asleep and happy - so is john for that matter!  It is 4:37 a.m.  Soon I will be too!

Sunday, January 20, 2008

Jan 19th - Kelly

Kyle has reached 4 pounds!  He is so cute in his outfits all swaddled up and in a big boy crib!  He is doing great. consistently on 21 to 25% oxygen for the past 3 days.  He is now on CPAP of 4 and has been on 21 to 25% oxygen on that too.  He is tolerating all his feedings and is up to 35cc every time he eats.  He had a "normal" EEG this time and is now being weaned off Phenobarbital.  for the last two nights his dose has been 50% of what it was.  our next big steps will be nasal cannula again, then bottle feeding, the MRI, then surgery for a hernia.  

All the babies in our pod seem to be holding it together.  it sounds so morbid to say but it seems like the cycle is changing.  It's true, the nurses say the deaths and discharges come in waves. you will have a while where so many of the babies die and then you will have season where so many babies go home.  I can't describe how it makes you feel when everyday it seems someone doesn't make it.  We have some really sick babies in our pod but for now - they are hanging in there.  Even our little friend with no name & no visitors... he has a name now and saw his mom this weekend!  He even has balloons on his bed!  and best of all - a nurse signed up to be his primary!  so he is getting loved on now!

so today, even though the nannies have had to go back to "real life", Carol was taking the boys to incredible pizza.  she was carrying jack in the front door and tripped on a rug that was outside the front door and in an effort to save jack she fell on her arm and broke it!!!!  I can't imagine how bad that hurt!  so someone called an ambulance and Carol called john to say come get the boys.  so john thought and told me that they boys were at incredible pizza with Mario (they guy who works there) and Carol had been taken off in an ambulance.  so he is driving 90 miles an hour to get there!  So I began to talk with God - WHAT!  one kid is in the NICU and the other two are with alone with a stranger in a strange place and john can't get there fast enough.  John talked to Jadon on a cell phone and jack was screaming in the back ground.  Jadon (in his words) was trying to be brave but cried a little.

I really didn't know at this point what God wanted from me - I felt like I was in yet another helpless moment with my kids!  and even thought I am in a funky place right now spiritually - the first thing I did was go to my knees and begin to beg God.  i am hoping that is b/c of the truth that is inside me.  evidence of it as it reaches the surface.  there is a watermark song that says "even when I'm sturdy - I pray you'll keep my knees dirty."  ha!  maybe that is the problem.  I have been coasting along in my own life so sturdy for so long that I just thought my knees were dirty.  I just thought my life was dependent on God.  I just thought I was desperate for God to restore me, my family, my friends, my community.  and now that I am living it - guess I wasn't so desperate, I'm willing to say now that I wasn't even needy.  so if I am approaching God not needing and not desperate - hmmmmm.  but I still have a hard time with the idea that this is happening to kyle to teach me?  that just doesn't seem right - but I dont know maybe it is about everyone at the same time?  the whole part of that song is this....

"I have been chosen to be driven to humility.  to be holy refined in your holy blaze of fire. and even when I'm sturdy I pray you'll keep my knees dirty and may the heart of your will be my only hearts desire!  that last part is what i want to understand.  how can i be restored to where the heart of God's will is my only desire.  and as i sift through the vast emotions and thoughts of the past 3 months how do I even know what the heart of His will is? no.  no i don't.

So I was scared and begging God to keep my kids safe.  I knew Carol will do as much and whatever she could to keep them safe.  But not knowing how bad she was hurt I had no idea what was going on.  Sure enough john arrived to Carol not letting the ambulance leave with her until john got there - now that is love!  and Mario (the incredible pizza guy) had given jadon and jack game cards and they were living it up!  all was well.  Jadon wanted to make sure ms. carol was not going to die and once he was sure of that and got some mcdonalds to eat the world was okay again.  He did ask several times about her and wants to "get her a gift or something" he says.  He also said she will have to have a cast and that will make her look funny but he is not going to tell her that b/c "ladies like to hear they look beautiful".  what a kid!

I believe carol has a spiral fracture - that hurts me to type.  The ER set the fracture, put her in a temp cast and sling - gave some pain meds and sent her home.  The will give the swelling a few days to go down and then she will see an orthopedic.  i feel so bad for her.  I can't imagine how not only painful but frustrating it all is.

(and from those of you that were wondering - the hokey pokey was not involved.)

Friday, January 18, 2008

Jan 18th - Kelly

When Kyle's doctors called the other night with the information that he was not breathing on his own well, having a hard time keeping his heart rate up, he was lethargic (not responding well), and his oxygen requirements were way up and he was not saturating well.... all the air that had been slowly becoming available for me to breathe left the room again.  Every story from the internet that I had read about preemies living 8 weeks and then getting an infection and not living came rushing back.  I spent much time that night letting God know exactly what I would feel and do if took Kyle away from us now.  His NP started 2 antibiotics, took blood cultures, a CBC looking for infections, a CRP looking for inflammation, and put him back on CPAP.  We waited.

that night jack prayed.  i asked if he wanted to pray or if he wanted me to pray.  he said "jack".  so I said okay and this was his prayer.  "Jesus... tyle (that's Kyle)... better"

he said it best - i keep trying to make it elegant.  like that will make a difference.  you know lots of people compare God to a father ... like our earthly father.  and when jadon asks us for something and he whines - he DOES NOT GET IT.  but if he asks in his big boy words - he has a better chance.  God probably doesn't work this way but just a passing thought - maybe I should stop whining, pulling on God's pants leg, wallowing on the floor making whiny threats about what I will do if I don't get my way.  hahahahaha - we always say that jadon takes after me!

That next morning Kyle was much better!  He has spent the last 2 days at 21% oxygen.  that is room air!  at 1 a.m. they will officially say that Kyle does not have an infection and they will pull his antibiotics.  He has already been weaned down to a CPAP of 5 and tomorrow they think he will go to 4!  the next step will be (once again) nasal cannula.  Brandi is amazing at keeping his Os down.  and Misty is there tonight. back from the dungeon! yea!  so kyle has awesome nurses and I am learning that makes all the difference.  

so, Kyle is doing really good!  he is now officially holding his own temp as he went to an open crib today!!  or big boy bed as we like to call it.  so he has been weaned from help with his temp.  he is really getting big.  he also has a mobile - he looks at it and it plays music which he also notices!  

kyle loves his paci! he loves to be swaddled.  He LOVES to have his head scratched through his hat.  and he loves to be held.  he loves his nurses and did i mention he loves his paci!

john and i are running around like crazy.  we meet each other coming and going.  but it is just for another month and a half they thing - docs say 2 months - but our nurse today said she thought maybe a month and a half!  we juggle the boys - juggle the house work - and john is really swamped with work.  i know we can hang in there but today brought frustration and stress and that led to arguing!  two babies of the families that both think they are first borns and you can imagine - we can fight! I figured with our stress levels this high and lack of sleep this is just part of it.  by the grace of God and john's amazing ability to get over it - we are fine.  seriously you give him 5 min and he is good - today took more like 1 hour!  

i am having a hard time spiritually.  I have a great need to understand and I do not right now.  I have high expectations (ask any 220 volunteer about that!) and they are being let down left and right.  I just need time to figure this out - i know you are big enough to handle this God.  or at least I have heard that cliche at a church before somewhere.  that is what I mean. those of us that have grown up around modern day american religion spit out cliches like that and actually believe them.  that one is pretty harmless and true but not all of them are.  so for now I will work this out.  I believe in God.  I believe in truth.  I know the truth is buried in me b/c every once in a while a bit of it finds its way to the surface of my thoughts.  but people, religion, idolatry, rational - they are all getting in the way and it will take time to sift through it.  

and when we all come out the other end of this we will be different.  thank God.

Wednesday, January 16, 2008

Here we go again... John

Well,... it is wednesday... it was suppose to be a "wean" day on nasal canula,... instead, we just talked to one of our primary nurses, Valerie, and she wasn't too happy.   We were informed of what we were afraid of yesterday.  They have had to put Kyle back on CPAP again.  He has had multiple brady and apnea episodes today.  We are continually told that this IS NOT a result of Phenobarbital, but, this is the second verse, same as the first.  This is pretty much exactly what happened the last time we went to canula, they decided to "reload" him with phenobarb... and the result,... not good.  We have no idea what is going on other than his oxygen needs were up all day into the 60's (this is from 25-30 yesterday... again, before phenobarb)... and now he is real lethargic (this is never great because it is an indicator of underlying illness usually)...

Please be in prayer for him tonight.  Pray that whatever this is goes away very quickly.
They have already responded with antibiotics, not even knowing what it is, so they are jumping on it pretty quick.

Pray Kyle does well.  This is a set back.  We were doing so great too... they were even talking open crib today.  Kelly and I are really bummed out and don't know what to think or do.

Thanks for praying.

Early Wednesday Morning - Kelly

It is 4 a.m. again and I am ....  milking myself (I am so NOT a fan of this - but must admit - it has been good for little kyle!)anyway just talked to Amy, Kyle's nurse.  and he has had a couple more of these large de-sat episodes that he had a hard time coming up from.He requires extra oxygen and stimulation to come up.  Then he does wean back down and it has only happened 3 or 4 times since the nasal cannula.BUT he is still on it and they are watching him.  One of his NPs wants to wean him tomorrow down on the flow of his nasal cannula?!  not sure about this - so I am going up there at 7:30 a.m. tomorrow to plead our case and see what is going on.

had our EEG today - uhhhh.  met with a new neonatologist that wanted to load Kyle with Phenobarbital again!  this would be the third loading dose.  and this Doctor talked about the injury to kyle's brain which we DON'T know if there is one.  but he is saying that there probably is and he is concerned about kyle being at sub-theraputic levels of the medicine when his brain, b/c of the grade 3 inuury, is more likely to misfire (seize).  But like I pointed out to him "it has been this way for a month!  so if you didn't follow the neurology recomendations = it is kinda late to cover their buts.  part of me worries that they are just covering them and not thinking about Kyle.  but he says they are not doing.  Dr. Fant (i think is how you spell his name) He was very concerned and he did the EEG at sub-theraputic levels and then loaded him again!  3 of his 4 big desats were after this!  that medicine makes him sleepy so he has a harder time remembering to breathe.  I asked why other docs would leave him there - he did not comment and said that is why we want to all get on the same page while he is hear and so we have a BIG meeting with neurology soon. I am dreading that - they are so negative - they don't think they are but to me they are.  VERY.

anyway - no primary nurse tomorrow so I will be there bright and early to listen and comment on our thoughts!

I am asking that God you grow his lungs to where he doesn't de-sat and have to work so hard to breathe.  Would you give him rest and cause him to grow.  Would you heal his brain that when they do the MRI and this EEG they only see perfection that you created and have restored.  I now you heal - I now that - one thing I know - I know you do this. Please.

Tuesday, January 15, 2008

Monday Night - Kelly

a recap. Saturday I felt like a real mom again.  Kyle was good that morning!  He is so bright eyed at different times during the day now.  He will just look all around and if someone walks up and starts talking (if he feels like it) he will look over their way!  too cute!  He also will make sucking noises if you put the paci up to his lips - that is the cutest!  We had a good time, his nurse that day (Valerie) is really fun to be there with. laid back but really good!  so we just played - I held him the whole 4 hours I was there and while I pumped john held him.  OH and john had to run an errand for me this day that really made my day... you will need back story.... 

so I love breast feeding.... if you know me you know how MUCH sarcasm is in that statement.  and now in addition to having to pump (milk me) every 2 hours so as to increase my milk supply. ... wait... why do I need to increase my milk supply?  b/c the lactation consultant either didn't believe me or couldn't figure out why I kept hurting.  for 10 WEEKS I told her it HURTS!  if felt like "they" were being ripped off!  and I did not make much milk.  Well - she didn't have anythoughts but sent us to this store (or sent john really) and the lady there said "oh... try this." and she was right.  just needed a different "cone".  I know i said I am writing like this is my journal but I am very conscious right now of my FATHER reading this.  Hahahaha. sorry Dad!  and Keith.  anyway - so it worked the other cones were great!  but after being engorged for 10 WEEKS my milk supply had gone down.  so the lady said you have to pump every 2 hours!  I GASPED!  so every tow hours I spend 30 minutes with pumping for 20 and set up and tear down and washing for 10.  seriously 5 hours in a 24 hour period.  every two hours and once in a twenty four hour period I get a 4 hour stretch.  

why would any mom with a healthy baby do this?  ahhhh.  10... 9... 8... 7... ... i am waiting for someone form the la leche league be at my front door.  just kidding.

anyway - so now that I am pumping every 2 hours (did i mention I am not a fan of this - but kyle needs it so here we are!)  the other night I look down and my milk is all red.  the skin around my nipples had torn and was bleeding!  so the next a.m. I call the breast feeding store.  I call her my breast therapist - i think she is a lactation consultant and she tells me I have to keep pumping or I will dry up!  I get that but does anyone hear me when I say "skin is ripped and I am bleeding!"  I shouldn't poke fun - these ladies are AMAZING and are really helping me - but back to why my saturday was so good - so I have to send john to the story to buy some cream she told me i needed.  so john goes to their store that day and has to ask for a product called Mother Love Nipple Cream!  FOR REAL!  Had to walk in and ask for that - and the lady looks at him with understanding on her face and says "are you sore?"  HA!  that is too funny to picture!  so john will all the confidence in the world brought me my nipple cream which is actually working and so here i sit at 4:10 a.m. milking myself yet again.

oh - on to my good day - I came home and played with the boys at 4 pm and we had the best time - from baking cookies to having a neighbor friend over and playing outside.  bath time and dinner together - bed time stories and even had time to myself to pay bills and balance a bank statement.  it was a good remembrance of what days might be like again soon.  i can't wait for that fast paced life with kyle home and in his little papoose and then before I know it on to that back yard that is waiting for him!  Lord please heal his lungs - would you let him breathe easy tonight. would you be his breath! please give him strength and help his body draw nutrition and calories out of his food!  Lord I really want this step forward for kyle.

he looked great today.  he was up to 40% oxygen when we left though and he was working a bit.  by midnight he had gotten down to 35%.  his nurse said (AMY is amazing - amazing nurse, mom, wife.  she does it all and does it all with excellence it seems - i only see the nursing side and hear about the fam - but she is truly talented when it comes to NICU level 3 nursing.  very detailed, meticulous even.  very 1st born personality - ) she said that he is working a bit and she would just watch him and give him some time.  She is great!

it kind of stinks b/c I like being at the hospital when our favorite nurses are there but at the same time when they are there is the only time I feel comfortable enough being home with the boys or running errands or whatever.  ah - running errands a sure sign that life is returning to normal.  I also did tons of laundry this weekend and kept up with the dishes and picking up the house.  sunday was a bit harder.  i was edgy, tired, emotional and all with the boys right there in full view of their crazy mom.  We talked a bit that day about how grown ups can have bad days too.  

Monday - kyle is needing to "fly" as they say on nasal cannula.  I know I should just be thrilled that he is NOT on the vent anymore.  I just really want to keep moving forward.  there are 2 babies in our pod that are really sick.  how can I worry about nasal cannula - but I do - I want the best for my son and quickly - I feel like the end is in sight - if we can just get home.  I just want to keep moving forward.  life in the NICU is getting harder.  harder on me - kyle is getting better and life is getting easier.  i guess that is part of being a mom.  and for kyle, jadon, jack and john I am willing.  bring it on.

after this is over though I want to move far far away and board my little family up in a house where we have all we need and never have to come out.  we have each other and that is safe to me.  all this vulnerability is not what it is cracked up to be.  I really and truly just want to crawl inside myself and not even half to peak out at all that is around me.  and this is what a mom with hope feels like.  what about the other parents?  ah - how bad they must hurt.

and I have really been contemplating God and why I am so struggling when it comes to my thoughts of him.  I spend a ton of time alone these days and so my thoughts often turn to how jacked up my faith seems right now.  but it has been weird b/c I don't feel like I don't believe God - I just feel like I don't know if I believe what we all think we know about God.  i am not satisfied with who I thought God was.  

After these last 3 months of my life I need to experience MORE than I have not in order to believe in God but in order to be Satisfied in God.  So that is my prayer for now.

and I really need to go to bed - milking session just ended.

Sunday, January 13, 2008

boys will be boys... (john)

Today was a good day.  It started with leading at woodsedge montgomery for me, ... which was great.  We debuted one of the new songs of the new album that was suppose to release, OH LAST JUNE but who is counting, right?  (only those who pre purchased the cd thinking it would be here now... sorry.) ANYWAY,... that was cool to hear the song come to life on stage, and to lead it with a real live crowd.  I came home, took a 10 minute power nap after lunch,... which turned into an hour power nap.  Kelly took off for the hospital and I got to hang with the boys today.... just the men... we had fun.   Driving the motorized jeeps outside, a trip to walmart,... a few new veggietales movies later,... we had fun.  Jadon didn't go to bed till 9:30 pm tonight...
(don't tell kelly, grandmothers, nannies or the school tomorrow.)  But, ... we DID have fun.

quote of the day... It got to be around 6:45 and Jadon was not letting me forget that he was hungry.  He layed on the kitchen floor all wailing and scooting around declaring his dire hunger saying... "I'm dying the death... I 'm dying the death..."

I was like,... "seriously Jadon, ... really... dying the death, huh?... come on."

then, I realized just how truly funny this was.  He is 5. Ridiculous that he has such
the sense of humor, wit, etc...  all while Jack was being jack in the background wandering
around skipping over millions of dollars worth of toys to try and find something of mommy's or daddy's to break... the more expensive the better... haha  boys will be boys I guess.

Kelly came back from the hospital very encouraged tonight.  One of the doctors (who is very good) ... well, he is really good, very respected... intelligent,... BUT, we call him dr. doomsday,... anyway, he came in tonight and was very encouraged about Kyle's progress since last time he saw him.  Kel said that Valerie, the NP, presented, and he kept asking questions of whether or not Kyle had this issue or that issue over the last few weeks, ... her answer kept being "no"... "no"... etc... his disposition was very surprised while saying "wow... Wow... WOW!"  Then, he turned to kel and said, "so when do you want to take him home?"  (Kidding of course,... he isn't totally there yet...) BUT, never the less - it is always good when Dr. Doomsday seems encouraged, you know what I mean?  haha... He really is a superb doctor, and we like him.

THEN..., one of our primaries told Kel that Kyle was doing so great.  She made reference to Kyle having favor... this made for a very good day/night... ofcourse, after holding him too.

Valerie, (one of our primary nurses - not the NP)  had him all dressed up in a "cute" little outfit (as kelly said...)  I am sure he was adorable.  

All in all, a good day.  Please pray for Coy.  He is our little buddy up there.  He is a few weeks younger than kyle.  He is fighting hard.  Chris and Anne Marie are his parents.  Great peeps.
Lift up their whole fam if you will!

What I Meant was Pray - Carol

Funny how one little comment about something can cause an explosion. What I really meant for everyone to read and think about and do, was pray desperately for Kyle. John and Kelly will be fine, financially, physically, spiritually. They will be different, changed, older, more in debt, but fine. They aren’t asking for anything other than prayer. They are gradually taking back the reigns of day to day life from Traci and I. That is a good thing, for them, for their boys, and probably for their life. But I imagine it is a scary thing as well. It’s a lot to manage. A baby in the NICU, two boys at home, breakfasts, dinners, grocery shopping, a baby in the NICU, a marriage, a baby in the NICU, laundry, paying bills, organizing 220, a baby in the NICU. You get the picture.

So for the love of God, or the love of each other, can we just please stop talking about money and Medicaid, and medical bills, and just love one another enough to say that sometimes we all just let stupid things roll out of our mouths or in the case of blogs, off our fingertips? Can we get back to the point?

What I meant was pray. That is, after all, the name of the blog . . .

Saturday, January 12, 2008

Comments, Money and Me - Kelly

i tried not to weigh in.  but in light of some of the recent comments we are receiving in reply to our posts,... I think i will.  Please don't take this the wrong way,.... but I have not been necessarily writing my thoughts to all of you - all of you that are reading this.  Yes, I update with prayer requests and the blog is a great way to get the good news of kyle's growth or the prayer requests of his needs out to everyone, and yes, I am so humbled that God is using this forum as a way to minister and grow some of you,...  but that is not my focus.  this has become my journal.  my online historical account of this crazy life of mine for right now.  Also, my therapy at the end of the day to be able to articulate my thoughts, emotions, etc...It is my heart spilled out.  i rarely write with out tears streaming down my face.  So, when you read this, please do so with care.  I am not asking for opinions or advice, though I have been encouraged sometimes by your comments.    I am not even asking for you to take on my words.  I am just writing.  free thinking ... with the hopes of one day providing another mom like me with proof that she will be okay.  When she thinks that she has lost her child, her other children, her husband, her friends, her God and her way in the world - maybe she will read all this and know that it will be okay - one day, some how it can be okay.

regarding the money thing - wow... if you have ever met my dear friend carol this will make sense - she was hurting, - hurting that she saw her friends (not just friends - we are family) my kids are her family, she truly loves me and john.  we have a very deep relationship.  She was hurting as she saw us hurting.  She is scared just like i am that others will go on and forget to beg God and forget to help out - she gets up at 5 am or something insane like that and goes to work, then she leaves work and comes straight over here to keep jadon and jack.  she also keeps them all weekend except for when she has to go to work - she works on the weekends too.  She gives all she can and maybe, just maybe she felt like I do sometimes, "Will they forget me?"  "Will my friends think that I should be over this by now?"  Carol has even said to me that someone asked her (when she mentioned she was coming over here and couldn't go hang out,) "oh, are you still doing that?"  so that is why she blogged.  Not b/c she hears us worry about money, not b/c she worries about money, not b/c she is unaware of medicaid.  but b/c she was writing her thoughts and wanting to encourage you, she wanted to see people keep loving us the way she does.  And she is not the only one that has given up her life for us - traci is right here with her...  keeping our kids, loving our kids, loving us, providing hot meals for us, running errands,... she has spoken of the same concerns -- carol is just the vocal one online.

For those of you that know me and john - pennies mean little to us.  We would spend every dime we had to see just one minute more with our son.  We would sell everything with out a care or sadness to make this happen.  None of this is about any sort of money.  We are well informed about medicaid.  We have many people in our lives that feel the same way about money and would give us any amount needed at anytime - for anything.  So please know, this was not, and never has been about money.  

There - i said it.  and also for those of you that know me... wasn't that polite?!  I tend to get a little feisty sometimes.  :)

So from now on - if you would like to peek into my thoughts then please read.  but don't feel the need to fix me - if that can be done I'm sure God will do it.  but please - please keep encouraging me.  i have a hard time expressing a need, ... that I could have needs.  but boy do I right now.  I am hurting, i feel lost all the time, I used to be supermom (okay - I thought I was!) and now I ... I don't know what I am and barely know who I am.  I miss my husband, I miss my kids, I really miss my friends, I even miss the Y :).  but I am here to fight... and not just fight for kyle - my little lion, who by the way is doing just great today!  but I am here to fight for the other moms and the other babies.  I was prophesied over long ago that God had given me the gift of healing and this man encouraged me to not be afraid to put my hands on people when I prayed for them.  I thought he was somewhat crazy at the time...  but the Lord has changed my mind.  (that's another story for another day).  so I am praying and fighting all the time.  interceding... I need all of you behind me.   John needs all of you behind him and so does kyle especially -- and Jadon and Jack.

I said it -  I admitted my need.  Please continue the prayers and the encouragement.  I read every word that is commented on this blog and many of them I cling to.  I went to one of your blogs this morning as i was milking myself (i know... sorry,... that is what it feels like it has become) and found out that one of you had a miscarriage or maybe your baby was still born.  I could not tell from your blog but the hurt that you wrote about touched me. The healing you wrote about encouraged me.  To know that you hurt and were scared and felt sick when you thought about certain things - this sounds cruel but it comforted me.  To know that others could go through losing a child and still love God and still be okay.  I do not believe I am going to have to deal with that but for me, this road has been hard too.  So all this to say - thank you to those that encourage me and to those that make suggestions - even about money saving ideas - thank you.  those are perfect and i love them.  I just agree with what john wrote.  none of this is about money - it really is about community.

And even though i feel alone sometimes - the TRUTH is you are there - my community, I know you are there and are praying and loving even if it is from a distance.  This is just hard to remember sometimes.  This road feels very lonely.  And i know it feels lonely for those who are living in it constantly too.

Everyone is tired sometimes in whatever their hard place is.  But i just know it will be worth it - i know it will.

So from now on you i will probably not be addressing people that are readers but I am glad that you are reading - it keeps me accountable to blog and I know that one day - maybe even now - God will use these thoughts to love someone.  To heal someone...  and maybe even to restore someone.

Thank you for reading - Thank you for praying.  No matter what you read that I am questioning, I am grateful.


Thursday, January 10, 2008

Doctors and Nurses - Kelly

Kyle is doing good today.  He is down to a CPAP of 4!  This is a great step to Nasal Cannula which looks like it is coming on Monday.  Please be praying for Kyle this weekend.  We are asking Jehovah Rapha, our healer, to strengthen his lungs so that he will have what it takes to go to nasal cannula.  He had a several de-stats today (this is where he is not able to oxygenate his blood sufficiently).  these need to subside for him to be able to go to nasal cannula - a big step that we are really excited about!  other than that - kyle will be getting another echo soon for to look at the pda (which they believe is closed) and also to look at the clot in his heart.  as of now they think the clot has turned to scar tissue.  kyle gets a shot every night of lovenox (sp?) to keep the red blood cells from clotting around the scar tissue that is in his heart.  They will re-evaluate at the echo if the clot is there or not, growing or shrinking.  Please keep praying for kyle's IVH (this is the bleed in his brain - bilateral grade 3) - last ultrasound showed that the blood was "clinically" moderately reabsorbing.  our doctors word was reabsorbing with no clots or PVLs.  I have been told by the doctors that all bleeds reabsorb - we need to be aware of what they leave in the wake.  so far so good here but still some steps to go.  i am not sure when they will do another ultrasound - they may even just wait for an MRI.  they are not doing these things in a hurry b/c this test does not change any course of treatment.  they are for diagnostics only.  to help parents understand what hurdles might be ahead.  funny how those explanations are full of "i don't know"s.  Kyle will also have an EEG as soon as he gets on nasal cannula - another reason we really want to be there.  this will help the neonatal neurologist in determining if they think kyle is having seizures still - please pray!  if he is not they will try to wean the Phenobarbital.  this will be great - it makes me nervous have kyle on a medicine that sedates his brain.  however seizures are not great either so I understand - it will be great though if he can come off and still be seizure free.  these are the big things right now.  and I pray a guard of protection over kyle's body from infection.

i wonder if my praying confuses God.  one day i beg you in prayer and in the next breath i am wondering and frustrated at the work of God or what seems to be the lack of work of God.  I don't feel like my faith has been shaken in who God is.  but everything i think i know of God seems to be wrong?.  very confusing - I have a whole know outlook on the verse that says "I believe, will you help me with my unbelief." i think i might know how that man felt.

Another one of Kyle’s pod mates died the other night.  I had only seen his father once and I had never met his mother.  I can't convey in text how that grieves me.  actually it makes me mad.  I watched him every day - the nurses cared for him everyday.  but we can't hold him.  I can't open his doors and tell him it will all be okay.  We can't let him hear that one voice that he knows and surely brings comfort.  the only one thing that he could know and find comfort in.  So angry - I keep reminding myself that I can't judge b/c i don't have a clue about his mom or dad or what they may be going through - but none of that makes it okay for this little man who needed someone.  He was held that day, the day he died.  but that was the only time he had ever been held.  He was a another 23 weeker.  To see how hard the doctors worked to save him – it is amazing.

I can’t believe this keeps happening.  These little babies – so tiny – so helpless – really helpless.  I watched the doctors fight for him.  And I really mean fight.  They try every angle, every effort, every medicine that they can, every combination of medicine, every hardware – they would huddle and discuss, then walk away and process, come back and work.  They show concern but amazing strength.  They display wisdom and yet stay compassionate.  The nurses work tirelessly.  Consistently. 

One night I saw a nurse working on one of our little 23 weekers for 2 hours past shift change.  I heard a story of a nurse today working minute by minute with 2 other nurse all on one baby.  Today I saw a nurse reading and searching for as much info on her patient as she could find.  A rare disorder that the doctors were looking at.  They work and serve.  These doctors and nurses get a paycheck to do their jobs but they go above and beyond that – they use their efforts and experiences and time and energy to stir and think for our kids.  Not even their own.  I am constantly humbled.  That was not a cliché.  I am humbled.  And I am amazed.

another little one has taken the bed space of the one who just died.  he is not doing so good - i couldn't share his name with you if I wanted to b/c he doesn't have a name card.  actually he does but it is blank.  as the nurses were talking about why - one said that they mom had been asked by transport if he had a name - the mom told the nurse what it was but nothing was in writing.  no name in writing.  and the nurses weren't really sure b/c they had never seen mom or dad.  never heard from any family by phone.  so for 3 days now - no one has checked on this little one.  

sometimes I think that people think it is not that big of a deal b/c these are infants, like this is easier b/c they are so young or would be worse if they were older.  I'm not sure how to think through that - well maybe they are not even infants yet - they are supposed to be babies in utero.  but these babies are made to be loved.  to be talked to - even in utero I can remember my boys jumping about when john would lean down and talk to them.  they come out ready to be held and ready to be loved.  i beg God daily that these kids would be held by God's very breath.  that they would be cradled and one day have an UNUSUAL sense of our God!

I'm also praying for Coy tonight.  God would you breathe your healing breath into Coy's lungs and as he exhales would you remove the fluid and extra CO2.  Would you comfort him.  Let your mercy fall - let them fall on Kyle and Coy - they truly are waiting for you Jesus, waiting for healing.

i wonder sometimes if is okay to seek the hand of God so much.  but I do.  please help us God.  I give you praise for the days you have blessed us with these babies.  Ann Marie made a huge impression on me when she wrote of how they are yours - given to us to care for.  and I know we want the same thing - to keep them!  We want to keep them with us.  God would you give us visions of our children - running, playing, perfect.

The RE:education of Community - John

Guess who's back... back again... (john)

for those of you hip to pop culture, yes, I did just reference an eminem song.
Been a while since I have written, journaled, pontificated, scribbled some thoughts, so I guess tonight would be just as good as any to bring something to you, hopefully of value, but maybe, this could just be the post to ignore... we shall see...
either way, I must remind you of a few things before I get deep into the ramblings of my mind tonight.

1.  I write the way I talk,... stream of consciousness if you will... so this means, while I TRY to filter, sometimes (MOST times) the real me comes out on paper, online, whatever...
you get the point.  I am not, never have been, and never intend to be "GOOD" at mediocrity when it comes to presentation.   Let me break that down... I am NOT good at pretense - trying to convey a person that I am really not, for the sake of religious posturing.    It has not gotten us anywhere in our faith today culturally speaking unless you count of course the number of church splits etc from lack of true authenticity and community.

2.  I hope what I am about to think about out loud doesn't find you too offended.
I usually write these little articles of fun for my eyes only, saved in a file on my computer, which never see the light of day unless of course on my own blog, myspace, website all cleaned up, churched up and pretty enough to be "Safe for the whole family"  isn't that after all what we are suppose to be?  Like Jesus? Safe for the whole family?  That is another point of contention.
Our God is NOT Safe, but,... oh well,... another journal, another day...

3.  I AM going to talk about Kyle, because this is Kyle's blog.  I do not want to mess that up, or even jeopardize how many people are reading, praying, and loving us,... BUT, I do feel that sometimes, for the sake of unlearning and relearning, I must lend a voice.  (Not that I am the know all... but God has called me to speak and gives me words to say,... )
After all, we have had those that have said how you are encouraged through this, and I want this to be encouraging, even though it may come out with the tone of a good old fashion scolding... not so much the case, however, I wouldn't mind having conversations sometimes with the "anonymous" people of the world who write comments on the blog that may be misconstrued by many of us as just plain rude.  So... here we go...

First things first, Kyle is doing SUPERB.  I can not say enough how great he is doing right now.
He looks cute as ever.  I think he looks like Jadon.  He definitely favors him in many ways.  He is on c-pap, pressure of 5... they are weaning that tomorrow to a pressure of 4.  This is the lowest they go with C PAP I believe.  They will let him camp there for a few days, ... get adjusted, then it is back to trying nasal canula again by monday.  He is holding his temp well and is beginning to wear clothes everyday.  He is growing well weighing in at 3 lbs and 7 ounces!  He has a real cute cry (right now) haha...  it is great to see him doing so well.   They are looking into doing an EEG when he is off CPAP, which will hopefully allow us to begin to wean off the phenobarb medication for his seizures.  We will see what that reports.
Kyle has a little friend named Coy who is having a hard day today.
Please pray for him.  Pray that his lungs will heal.  Pray that all medications work as well as the study they are doing with him.  Pray for health for Coy tonight.

Ok,... so there is that.   Now, for the blog that should really just appear on my personal/ministry blog, but... this may well be encouraging to some, so... I write.  It is in reference to a comment left by "anonymous" which could be anyone of over 82,000 people who have read and commented on the blog.

We usually get these great and encouraging comments to all posts, but this morning, we were made aware of a comment that took us by surprise.   Oh, and by the way, please don't comment on this blog entry.  It will just be far better to leave it alone.  If you want to talk about it, please don't use this blog for it.  Email me personally at  I will be glad to have a discussion with you one on one.

This comment was left on a post by our nannies from yesterday I think... it deals with expenses, our money situation, etc... which is altogether a little strange, but... never the less,... whatever.
The post was an encouragement on our behalf to remember to pray... to encourage people to not forget what is happening in our lives.  We greatly appreciate all of you, and know that you don't forget about Kyle,... after all, you are still reading,... but in being true community to us, Carol and Traci (the nannies) were simply being encouraging to you, the readers, to please continue to help us out in our time of need,... after all, isn't that what true community is?
Anyway,... here is the comment that was left:

anonymous said...
Like Brenda said, while the family is definitely incurring extra living and other expenses during this time I think it's fair that when asking for donations that people know that babies born under 2.5 lbs qualify for medicaid and in Texas get 100% of their NICU medical expenses covered. So donations are needed for the family but not necessarily to cover the mounting hospital bills. This is an awesome blessing to have.

Praying for Kyle and his family daily and so thrilled at his progress!!

Ok,... so thanks for praying for us, anonymous... but let me help you a little.
Maybe you have walked in these shoes, maybe you haven't,... BUT never the less,
100% is NOT taken care of.   There are also many other things to consider as well,
but I really don't need to get into the complexities of our finances, etc... not the point.
The point is the unlearning of bad habits and the relearning of authentic community.

Christ followship is a funny thing.  I would say it is totally different from christianity today.
Christ followship brings me to the place where taking care of the least of these is a commandment, not a "cause."  It is a mission,... not a mission trip.   Christ followship means
loving my brother.   Religious, non religious, black ones, red ones, white ones, gay ones, straight ones, rich ones, poor ones, prostitutes and deacons.   Christ followship defines love in the purest of ways,... it is a daily striving towards walking, and looking like Jesus in all things. 

This I find is very contrary to the church today.  There are many who are starting down a path of authenticity, but sadly, they are far out numbered by those that are still trying too hard to be relevant or who aren't trying hard enough.  They are far outnumbered by those that are still caught up in religious practice rather than a love affair with a friend in Jesus.  
Christ followship is being driven to people of all races, sizes, economic backgrounds, ethnicities and cultures, and I would submit - almost driven away from the religious rhetoric of Rabbis gone by.  (what do I mean by that last statement?)  We have followed in the path of pastors and preachers far better than the path of Christ.  We have listened to the new laws added to that of Jesus and continued to add more and more to what Faith in Christ HAS to be rather than taking on the yoke of Christ.  still too hard... ok, further break down...
We have made up new religion with all new game rules (still calling it christianity) while being careful to add Jesus to the end of it to make it all right, being spoon fed the way to do it, never questioning nor thinking, nor studying... simply trying to keep the law of american denominational Christian values so to be a "good christian"  all in all,... it just simply does not work.  Christ followship means an abandon of  all things, an abandon of self, and an embracing of who He is and what He loves... to name a few:  A worship of Him and a love for His glory and His people.  Christ followship to me has become a sacrificing simply because the still small voice of the Lord told people to keep my kids, send some gas cards from across the nation, give grocery cards, send an email, an encouraging text or voicemail, ask how to support our ministry so it can continue through this,  buy preemie clothes and blankets for Kyle, leave gifts on the porch for our boys, cook meals, give gift cards, etc, etc etc etc etc etc...

It is obedience to what the Lord tells us to do whether in crisis or not.  Whether you are in the crisis or on the outside, praying, commenting, cooking, baking, leading, teaching, etc.....

So, to try and help my brother/sister "anonymous"  yes.  Our expenses have gone crazy.
Yes.  My income is different now.  Yes.  Our deductibles are going to be interesting. and YES!
Praise God, medicaid is going to be a great thing to help offset the biggest of all these -- millions of dollars to hospitals- literally.  It will help,... 

but please, learn to do something we have not been trained to do in our christianity very well...  

Be a Christ Follower and ZOOM OUT.  Look through the lenses of Jesus.  No matter what the situation is.   No matter what family it is the Lord speaks to you about.  Take what God has given you in time, talents and treasures and give them back to Him.  Whether it is in babysitting, giving money, giving time whatever.

I don't care if it is Bill Gates with a computer problem and you just happen to be an I.T. person.
If God speaks to you and tells you to go to his house, fix his computer and give him a visa gift card,... for the sake of obedience to the voice of the holy spirit... just do it.

That is the beauty of obedience, Christ followship and community.   It is the opposite of reason or logic.  It is faith.  Listen to the Lord -- even when it seems crazy, or unnecessary or even not warranted... and give.  Do what He says... especially when it comes to the least of these.

Now, to clarify... we are NOT the least of these.  Don't be mistaken.  The Sherrill family is a blessed family.  We have great family.  We have great friends.  We have a support network of a great board of directors for a ministry,... a community of faith called 220, a homegroup, and many many prayer supporters.  Even with our financial situation, we are still statistically living in a country that literally holds 98% of the world's wealth.

However, if we can't practice what we preach with those that we say we love, HOW can we be authentic when it comes to true religion?? (james 1:27)  I am not going to quote that for you- do your homework.  

Please know that I have a compassionate passion to see the church have a reawakening.
I want you, anonymous, to feel encouraged to think with the heart of Jesus when approaching people -- no matter what or who... no matter the situation.

When it comes to love and obedience,... the phraseology "just to be fair" should not exist.
WHAT DOES THAT MEAN?  Is there a suggestion of non disclosure here?  
All I read from that nanny blog is the voice of one, trying to be encouraging and helpful
to all of us - her community... to remember... to pray,... to give if the Lord leads...
that's all.  

Please know our family absolutely appreciates all things people have been led to give, and do.
We haven't asked for it, but you have given. I appreciate all of you who have come up with creative things and ways to help our family.  That is love in action. That is you being Jesus to us in our time of need.  Thank you Carol, Traci, Shauna, Caroline, Jen, Laura, homegroup...We value you helping restore community in us once again.  Thanks to you, crossroads and woodsedge.  Thank you prayer supporters.  I could blog and blog and never be able to say thank you enough to all of you... but, please know that in all things, more than we desire help, or support,... we truly desire obedience to the Lord.   On Your part and ours.  THAT is what Jesus would want of us.  Motivated action out of  love... not pity or obligation.
So, let us all continue to be motivated out of Love.  Christ Followers.  Crucified with Christ -- not living to self or for self, ... but allowing the truth of Jesus to live in and through us!  Let the lives we live out in flesh be through faith in the Son of God who loves us, and gave Himself for us... in all and through all, and FOR HIM!

Tuesday, January 8, 2008

Kyle holding his own temp!

A final picture or two from shauna before she heads back to germany!

Tues & Wed Kelly

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

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

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

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

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

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


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

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

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

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

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

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

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

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

The Nannies are Back - Carol

The Nannies are back on duty! Jadon and Jack are settling back into their routines, and the Sherrill Family is back to the "new normal." Jack has graduated to a big boy bed, as we all prepare for the day when Kyle gets to come home. Please pray for this time of transition in his life as he makes this official move from being "the baby." It's going fairly well right now, but of course, we've only had 3 nights of it. Also pray for Jadon who will be sharing his room with Jack soon. That will be a pretty big adjustment as well.

And pray for Kyle. That seems crazy to say. But I think sometimes when we (I) read the blog and the update is so good, maybe, just maybe, I am not so desperate to pray. Maybe I say, "Wow, thanks God. Way to go, another good day for Kyle." And while it is a good thing to give thanks to the Lord, we have to keep remembering that Kyle is a baby in the NICU. Healthy babies aren't in the NICU. Really sick babies are. He is still fighting to learn how to breathe, how to regulate his own body temperature, how to pee and poop like he should, and so much more. He should still be tucked away in his mother's womb. He doesn't drink out of a bottle or nurse. He is connected to a feeding tube. He is connected to a machine that helps him while he learns how to breathe. These are not things that healthy newborns do. He is a preemie in the NICU.

I don't say any of those things to be a "debbie downer." I just want you to remember to keep begging God for Kyle to be whole and healed. THANK HIM for all the miracles He has already performed, but also beg Him desperately for Kyle's brain development, his lung development, his gut development, his eye development. Beg Him to give Kelly and John rest and comfort as they both work through this.

And finally, don't forget that this is still a family in need. They have received a freezer for Kelly to store her breastmilk in. And lots of people have sent in grocery cards. But they have about 2 and half more months in the hospital. The hospital bills mount up by the thousands, daily. They still eat at the hospital many times a week. They still park in a very expensive parking garage every day, and still pay exhorbitant gas prices to travel the 150+ miles a day they drive.

Sorry for the long post, but I just wanted to remind you to pray. And if it's okay for me to ask, would you pray for me and Traci just to have the stamina to continue to nanny two very precious little boys with love and patience, to find time to hang out with our own families, and to be the women of God that we long to be in all of this?

Sunday, January 6, 2008

Sunday night - Kelly

Kyle is doing good today. He is eating good, sleeping lots and even having gas pains. I am not used to him acting like a regular newborn but yesterday and today he did!  He would pull his little legs up, let out a cry, and then toot!  It was great.  last night I got to hold kyle in a cradle position so I could check out his hands and arms and eyes and ears and lips and nose ... he is so cute. That was fun - but today we were back to kangaroo caring.  He still needs the warmth if he is out of his fort.

a comment on the site tonight really got me to thinking.  I have been having a hard time figuring out why the God I think I know isn't acting like the God I think I know he is (hard to follow huh?) Anyway, she said "why can't just we learn to learn to ABIDE? Why can't we just let Him be God, acknowledging that we aren't." this, I will have to think on.

I spend lots of time thinking these days.  I am realizing that praying is not so much running down my list in my head of who needs what from our great big God and what I would like him to do - or even asking for things that I assume would bring glory to him - no matter what level of spiritual wording we put it in.

Please keep asking God to heal Kyle's brain - to restore it to perfection. Tonight jadon and I prayed for Kyle.  He asked that Kyle's brain would grow and grow to be as smart as his.

Saturday, January 5, 2008

A beautiful Jesus - Kelly

knowing that jesus is beautiful has become something that I think about now - not just assume.  knowing that God is faithful (to himself and his character and his promises) is a thought I re-learn each day.  knowing that he is healer, knowing that he is good, knowing that he our father, knowing that the God of all is in each detail - all this takes all the effort I can muster - huge mounds of faith.

Kyle is doing good - he is still on CPAP of 6 and hangs out at 24% oxygen or so - today he was on 21% for some time on his tummy!  He is doing good.  He is eating 28 ccs of food now and digesting it well.  

I am overwhelmed by the those that are not doing well or have not lived.  another baby in Kyle's pod died the other night.  I drove home and couldn't get her out of my mind.  her or her family or the little boy before her and his family, or the little boy before him and his family, or the little boy before him and his family, or the little girl before him and her family.  I not just typing - there are names that go with each of these. how can this keep happening.

there were more family members in the waiting room than I have ever seen up there.  they came back 3 at a time as mom sat by here side.  she laid on a pink blanket and had a white bunny with pink spots in the corner.  in the other corner there was a book propped up that was titled "my book of bible stories" but it was written in spanish.  they obviously love her.

his mom couldn't come much.  I could never pretend to know the challenges she faced away from the NICU.  when she did she would sit and talk to him through the incubator glass.  As we left one night, she was coming in to say goodbye to him.  this was the first and last time she would ever hold him.  I will never forget her expression that night.

oh how this little boy was prayed for, begged for and he was a long awaited gift.  I remember so much love and so much hurt on his mom's and dad's faces.  So much joy the first day mom held him, I'll always remember the dad's smile as he walked by us to get his camera that day.  She held him all the time.  We begged God for him.  begged.  

He was term and mom and dad didn't know anything was wrong until he was taken from his mom's arms to come to the NICU.  He went home... home... what we all long for.  His dad screamed "glory to God" through every step.  Every step!  He claimed God's goodness, faithfulness, healing hand over his son, his family, my son and the whole life circumstance.  this little boy did not live.

This little girl died before I got out of the hospital.  I will always remember how she affected my husband.

how does this keep happening?  I will forever cling to who I KNOW God is.  like my friend breathed into me today... once you believe... you believe.  and I do.  but how can this keep happening.

when we first made kyle's site shauna was going to put a pic up of him. I was hesitant b/c I did not want people (and I quote) to be able to shed only one tear for my son and then turn around and do their dishes.  as if he never existed.  Shauna looked at me and said "Kelly... you do that every day."  (you gotta love honesty!)  she is right.  I wanted people to be changed and moved by God AND to care enough to fight for him and pray for him.  If they were not going to be then I did not want them to have the privilege to sit and watch my horror but do nothing and not even be changed.  How often am I a spectator with my mouth gaped open at what the enemy dishes out or what the world brings (however you want to say it) I might even turn to my friend and use it as dinner conversation and then I go do my dishes and forget.

my horror now comes b/c I can not escape.  

Dear God - please never let me forget.  Even when my life lets me walk away from this pain and into joy.  Never let me forget these people.  these people that hurt.  the people that you love.  these people that need and hurt and ache for joy and hope and peace.

Thursday, January 3, 2008

It's official! - Kelly

Kyle is doing good tonight. He is IV free still! and is gaining weight!  He is OFFICIALLY 3 lbs!  Well on his way to holding his own temp and being a little chub! - he is doing good.  It is hard for me sometimes to push away fear and just celebrate God's miracles.  So tonight at 2 a.m.  (oh no... it's 2 am!) and I am celebrating.  I'm thanking God for my little blue eyed boy that is growing and being healed.

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!