Kyle's NICU Story in Pictures

Thursday, July 31, 2008

1st bites of cereal

This video also was right when kyle turned 4 months old.  We started rice cereal and he did amazing.  he is having a few struggles in eating right now.  We are starting new therapies and asking those praying for kyle to ask for healing in this also.  

The funniest part of this video is in the audio!  listen to jadon and jack and if you know them ... it is ADORABLE!  Jadon is a little perfectionist that can't understand why he can't just eat and hurry up - also contemplating how the video picture of kyle is not the REAL kyle!  Then there is jack who hears me saying "MMMMM" to kyle and wants to know if i like the cereal!  then at the end you hear me ask him what he is doing - and he says - "I don't know... being a doggy"  and if you know jack - that just fits him!

They are all 3 adorable and amazing!  we never have a dull moment at our house!


video

Bath Time Kicking

video
This was actually about a month and a half ago!

Testing & Doctor Updates

The swallow study went great.  I had an amazing friend offer to go with me and I gladly accepted!  b/c of a story a friend shared with me sometime ago I was very scared of kyle's testing yesterday.  Once the study began it was pretty much over  - he had to swallow barium 14 times - they let me feed him while he sat in an infant seat - and then said they felt confident that he was not aspirating!  Great news!  Then they had me feed him the rest of the barium while holding him and they did an upper GI to see if he was refluxing.  No sign of that either! 

so we had a great morning!  The test was easy, painless (probably didn't taste too good) and went very well.

The speech pathologist that did the testing had interviewed me about kyle's feedings prior to the test - afterwards she recommended going ahead with speech therapy.  

Next we went to Neurology.  We switched neurologist b/c I did not like the lack of detail and explanation the other doctor gave.  well - funny story - the fellow (is already a pedi and training to be a pedi neurologist)  came in to do the preliminary work of the visit.  and it was the same guy that came to us to answer questions in the NICU when kyle was having seizures.  This guy, i'm sure, is brilliant , but was really lacking in bedside manor.  when we met with him back in the NICU he had not looked over kyle's EEGs - didn't even know how many he had.  When I continued to ask questions that he did not know the answers to (only b/c he had not looked at kyle's info) he proceeded to tell me that there was no way he could tell me what was wrong with kyle unless he could look through every DNA stand and there was no way but he know there was a reason that my body "spit him out" early and you can "put a new monitor on a broken computer but the computer is still broken."  his face was so red and he was so flustered - the student with him took over and tried to answer some of my questions.  all of the nurses new us and new I was going to ask 100 questions so they were all standing behind him trying not to crack up laughing!  one of our NNPs even waked in and confessed that she told them I would have tons of questions and to be prepared.  she walked in during that conversation and left immediately laughing b/c it was obvious they were to prepared for a high strung mommy that pays attention!

it ended up being funny - i knew he wasn't being mean and I know he couldn't tell the future - he was just so flustered!

anyway - he was my fellow again in the office yesterday!  Still no skills!  but Dr. Mancias is who we saw - he is amazing!  He explained SO MUCH to me.  here are the highlights.
He thought kyle looked great!  He was impressed by no seizures, no meds, and He loved how attentive kyle was and that he could sit, roll, track with his eyes and chew on his feet!

He taught me some about DEHSI lesions which is what kyle has been diagnosed with covering 2/3 of the white matter of the brain.  this is where the MRI (a very new kind of MRI) detects high frequency signals suggesting that there is more that what they want water movement in the brain - suggesting that the matter is less dense that it should be.  however - this MRI has not been around long enough to have followed any babies out a few years to know what this means.  He said really - they just started noticing this with the new MRIs.  He did not know.  However he did feel like kyle's condition was not static and he would continue to progress.

Regarding the reflexes that have not integrated in kyle.  The only one he commented on was the quivering. you notice this more when he is tired.  You can see it in his chin and when he stands and sometimes sits.  He said this is caused by immature milenation.  There are milenation cells that cause the milenation and premilenation cells that produce the milenation cells.  (can you believe they know all this!)  These premilenation cells can be damaged in a brain bleed.  Kyle has one small area where the blood came out of the ventricle - this is called PVL - paraventricular leukomalacia.  This is the concern for the possible damage to the premilenation cells.  The milenation needs to mature and to do that he needs these cells to be whole and healed.

If kyle continues to progress like he is and meet milestones ( which he is!!!) then we will do another MRI at 2 to see how his milenation is progressing!  Then usually at 4 years old they like to do another MRI b/c most milenation is complete by this time.

Dr. Mancias was amazing - extremely intelligent and a great communicator.  I took in tons of information and tried to retain as much as I could.  I hope that I am sharing with everyone accurately.

We will see him again in 3 months!  Thank you for praying for kyle.  I believe God is healing him.

I have attached some videos and here are some other updates for kyle:

- he cut his first tooth on july 28th
- he can roll from back to front over both sides - usually to the left
- he is sitting with boppy support or sitting between my legs
- he is on a great schedule of breakfast at 7:30 and 2 hours awake time - then a 2 hour nap, then lunch and a 2 hours of awake time and another 2 hour nap, then plays for an hour or so and then dinner, then bath and more play (and still a 20 min cat nap or so...) then bed time bottle and off to bed at 7:30.

- Kyle LOVES attention, LOVES his big brothers, LOVES to talk and sing songs with motions, LOVES bath time and kicking in the tub!

- Kyle is working on left side strength, sitting independently, rolling front to back, holding toys in his hands, babbling with consonants (babababa, mamamamama), appetite, eating cereal.

He is amazing and we really do have a blast with each play time, each therapy session, and he even loves his massages now!  



Tuesday, July 29, 2008

Big Day - Kelly

I am so glad to be home from summer - I have been checked out of real life and checked in to 220 life for the past 7 weeks really.  and Kyle has been there every step of the way.  We have done therapy in the 220 university office, in the back of my yukon, motel rooms, chick-fil-a, and many other random places.  I must say - kyle is a trooper - he is your picture perfect 3rd child.  Laid back, easy going, all around happy to be anywhere!  He loved being outside, loved all the attention, loved sitting in the car next to jack and sidney (jack's bride to be) and LOVED all the people!

This has been the hardest summer physically, mentally, spiritually and emotionally that I have ever been through.  These last 3 weeks sealed the deal - tough.  but i can say I am learning and growing faster than ever before.  hopefully i am changing in the process.  all those stories will be for another day.

UPDATE ON KYLE:

3 weeks ago I was in between weeks of 220.  I am the administrator of these conferences - or was - (this past week was my last week of 8 years of serving as the admin for 220 SLW). WOW -that is bitter sweet to even type!  I will of course still attend some and be involved through prayer and encouragement - but Kyle needs my attention right now.  He wins!

so - on to his update - 3 weeks ago kyle had 6 (7 if you count a revisit!) doctor/therapy visits.  then we left town for the 3 trip and this week we have 5.  we started the week with 4 then went to 6 and now we are at 5 and it is only tuesday night.  In addition to kyle I work 2 days a week (only 5 hours each day) and one of those weeks my awesome babysitter was out of town.  oh and there were conferences to prepare for.  but the business is not the problem.  I am cutting back on my work to one longer day a week.  I have resigned from the admin of 220.  so now I will focus on kyle and jadon and jack and john.  wow - that is alot of boys to take care of!

so why all the visits and why the increase in attention for kyle?  Kyle's doctors are getting concerned as to why he is not weaning on his oxygen.  He has had amazing weight gain - he is 17 lbs 6 oz which is between 5 and 10% on the growth chart - really!  the one for a 9 month old!   however even thought that thrills me - the doctors are concerned b/c he should have weaned.  he only started on 1/8 liter. he has been tested for pulmonary hypertension and is clear of that. So pulmonology checked him out 2 weeks ago and they feel like he is having micro aspirations - it is hard for me to believe b/c I feed him all the time and he seems to eat fine.  now since we started cereal he has been gagging and spitting up more.  but still has not trouble with his bottle.  she also thinks kyle has reflux - which shocked me b/c he has good weight gain and the only person crying when he spits up is me b/c i am so tired of changing outfits and smelling like spit up!  but really it does not bother him to spit up.  she looked at his throat and said it was only mildly red.  but he does have the slow stomach emptying b/c he can spit up frequently several hours after he eats.  but he never spit up when he was only on the bottle - only since we have started cereal.  but the pulmonologist feels like he may be refluxing just enough to aspirate.  She diagnosed Kyle with floppy cartilage in his trachea and/or esophagus.  This makes the aspirating and reflux more likely.  this is a problem caused by being a preemie - and the neurological concerns for kyle make this all the more important to dig into.  The other side of this is that during kyle's sleep study he had 12 apnea episodes and was hypoxic after just 3 or 4 minutes.  This was not great news to them.  However he does not have these episodes at home - or let me say he does not have apnea episodes that last longer than 20 seconds b/c that is what our monitor would catch.  He has also been having frequent de-sat episodes - so all of this together tells her that we want to do a swallow study, an upper GI and another sleep study.

i have mixed emotions - I am going TOMORROW for the swallow study and upper GI.  I am very concerned about the study.  I have heard of babies aspirating the barium and being severely injured from it.  I have heard concerns about the studies but several of our doctors - I got 3 other opinions feel like if kyle is aspirating - it is dangerous for him.  So we move forward.

the good news is that I started monitoring kyle's pulse ox closely again and he has not been de-sating anymore.  at least not much.  I even started pulling him off his oxygen for bits of time and he stays steady at 94 and one time 96.  this is during sleep.  he took a whole 2 hour nap earlier this week and never de-satted below 94.  then when he was sitting up playing in my lap he was satting 97 - this is all off oxygen.  on the oxygen he is still around 98 and sometimes 99.  I also did this feeding him and he satted around 96 during most feedings.  his heart rate was up to 150 or 160 during feedings but would be around 110 to 115 all other times.  not sure if this is normal?  so I feel like he is making progress - so I called 2 of kyle's doctors and they said that 4 days doesn't take away 4 months of desats so we should go ahead with the study.  so we go tomorrow.

i would love thoughts about any of this from other preemie moms.  is it normal for them to do great with a bottle and then have trouble with cereal?

oh - that is the other part - after pulmonology we had therapy that week - Kyle has a couple of reflexes that have not integrated yet.  she said this can be a sign of CP and for now we will give him more time.  the other thing is that during the 2 week of our travels kyle started tongue thrusting and sucking on his tongue.  Kyle's physical therapist said by my description that she did not think these were seizure related (her biggest concern) but still things that she did not like to hear.  however - we met with a speech therapist and she gave us some exercises to do and if kyle gets it in a month then we will continue but if not we will start speech therapy.  we are 2 weeks into this and we are very diligent about our exercises and I am not sure I see improvement.  but I know what to do and we are definitely on top of it.  I would also love to hear from some preemie moms out there if you have any thoughts on this.  I really thought that kyle did so good at the bottle that we would not have ANY eating troubles and we might not - but she is concerned about mouth coordination and some oral fixations for kyle.  She also said that she is noticing some left side weakness in kyle.  this is strange b/c he was given a prognosis of right side cerebral palsy.  I see the areas that she mentioned and we have increased therapy for this and increased and changed his infant massage.

so please be praying over kyle in these areas.  and please be praying tomorrow - or today - wednesday - for the studies.  honestly - I am really scared - i am on my guard though and praying constantly.  please beg for physical protection for him today.

so for the extra attention of mine that kyle will get ...  ... doctors visits for kyle are increasing but my hope is that this will settle down in a couple of months.  However both of kyle's therapists have said that his need for therapy is increasing.  and we should expect to stay deep  in this for the next 2 to 3 years.  One of them told me that for a child like kyle, at least in what they are seeing, our involvement and willingness to work several times a day at therapy and infant massage over the next 2 to 3 years can mean the difference between "he has cerebral palsy" and "you would never know he has cerebral palsy".  this does feel like alot of pressure but when has raising kids not felt like alot of pressure!  I am just realizing the priorities in my life.  I would give up any activity in the world to give kyle the best chance at life he can possibly have!  His physical therapist said that he is a great learner - that she could really tell what we had been working on and that he was learning fast!  She also said she loved his positioning!

thank you for your prayers today!

Friday, July 18, 2008

Update on Kyle - Kelly

I am not sure why I put my name up there anymore - John doesn't post much.  maybe I am hoping he will.  I would really like him to tell "his story".  just to have it journalized too.

Anyway - an update on Kyle.  I promised it last blog and didn't record it.  Kyle is adorable.  anyone that has seen him can attest to this!  He grins from ear to ear just b/c you look at him and if you speak to him you will get a squeal and probably some kicks too!  He chats and coos - he even is starting to have a little chuckle!  He is very playful - loves to stand up - loves to be held - adores being chatted with! - is thrilled with watching his brothers - likes to play with his feet...

speaking of playing with his feet - this is a huge milestone - kyle was not doing this at the corrected age that he should - we spent 4 weeks working on it and now - he has those feet in his hands all the time.  he also crosses over - left foot to right hand - that is a great neuro milestone also.

I'm sure kyle would be chewing on his feet if his adorable little belly was not so huge!

Kyle weights 17 lbs, he is corrected just over 5 months old and by birth date he is almost 9 months old.  He is at 50% developmental status for his corrected age.  This is a big month - to stay here he needs to be sitting and rolling in the next 4 weeks.  That is our goal and we are working our tails off.

Kyle eats breakfast, lunch, dinner and bedtime bottle now - he takes 2 naps a day and goes to bed at 7:30 - he gets up at 7:30 for breakfast.  He is about ready to stop being swaddled but he still just needs that to settle to sleep.  He drools constantly, loves to bite on my fingers or his, he chews on his oxygen tube and loves his nuk brush ( a therapy tool for oral stuff).

Kyle has learned to screech!  he does it to music or when the boys are loud or if he is mad or if he is happy!  so really it happens quite often.  He just seems to like that he can make that noise happen!  He can sit up with help - is doing 4 to 5 min of tummy time with out fussing now - this is about 4 times a day. 

We are doing therapy 3 times a day (30 min sessions at least) and we do infant massage 2 times a day.  We got clearance to use a mega-saucer for 2 10 minute sessions per day!  this was pretty exciting to me - I can't wait to see what he does in one!

kyle sings himself to sleep - you will hear this cross between babbling and moaning and that is kyle soothing himself to sleep.  the funny thing is that all of my kids have done this!  hmmmmm.

Well - that is kyle.  we take him everywhere.  No nurseries but he goes everywhere with me.  Even 220 - he loves all the attention!  what a hound!

Kyle is growing like a weed and seems to be progressing and changing each and every day.

Tuesday, July 15, 2008

I can't believe it.

I can't believe that so much time has gone by.  I feel like about a month ago I fell into a really dark hole.  It is by the grace of God and the love and encouragement of my husband that I feel like I'm climbing out.  fighting my butt off to get there - but climbing out none the less.  So if I have avoided your email, avoided your call, neglected my blog family... I am sorry.  It has been rough.  I have some thoughts on the last few weeks.  might not make sense but it does to me and I really want to journal it.  I am sharing things here that I have asked other's permission to share.  

i can't believe the effect tragedy can have on someone.  I can remember watching this family on TV a really long time ago and their house had burned but the whole family had gotten out alive.  They were distraught.  I couldn't understand it - i was so judgmental towards them b/c they had their family - how could they care about anything else.  I get it now - it is tragedy.  I wonder daily how many people look at me and think - you have your son.  how could you be struggling?  but tragedy damages people.  not that we can't be restored - boy do I believe that - but it causes wounds and scars - that is how I feel.  damaged but at least aware of my many wounds and seeking restoration.  so if I have my son, he is growing and looks amazing, what is the problem - that is what I have been learning.  what damage has been done?  

I am a type A personality - work great under stress - high pressure situations - all good to me!  but I admit - kyle's birth and all i learned in the following 6 months took me out at the knees.  I sit here in disbeleif that this is where MY life is.  and strangly enough it isn't b/c of KYLE.  his birth ya - but it is different.

oh and if you want to skip ahead I will update on the little man! he is too cute!

but really I want to share something - something I need to say out loud for myself.  I am really struggling.  everyday is a fight to choose joy everyday is a fight to choose faith everyday is a fight to love and serve others.  and i want to shout BUT I WILL - B/C I KNOW THIS IS TURTH AND THE GOOD AND PERFECT WILL OF OUR GOD!  and it is what is best for me and my family.  I know truth like - he created kyle in his image and me too; he created me b/c he wanted to; he has plans for me that are good;  his character is love.

Kyle was born in late october. in late november we were still dealing with his brain bleed and moving into dealing with a clot in his heart.  still a tough time for kyle and for us.  On thanksgiving night another 23 weeker was brought in - his name was Matthew.  Matthew had the sweetest little blanket on top of his incubator.  He had the most adoring mom and a very worried dad.  John made a B line for dad.  Hoping to encourage him - hoping to find friendship where we could encourage each other.  Not me - i stayed away, scared... petrified to get to close to anyone and risk more hurt.  But mom had this smile on her face, tears too but still this smile.  I thought that she didn't understand what she was in for - none of us do at this point. but as I did get to know her - i understood her smile.

 I won't list for you what he struggled with b/c when a 23 weeker is born it would be easier to list what he isn't struggling with.  Matthew was very sick.  He had very rough days - I remember the first day she got to kangaroo hold - even dad was grins ear to ear with his camera that day!   Matthew's parents are precious - loving, kind, always there; and today I am so glad that we have become friends.  There is a bond in the NICU moms and dads and their nurses like I have rarely experienced.

Matthew fought so hard - his parents fought so hard - his doctors fought so hard for 18 days.  I remember this afternoon like it was yesterday.  Matthew was very sick.  I remember being in the pump room (my least favorite place in the hospital!) - pumping and crying b/c I knew God was asking me to pray for his healing.  the hard part for me to type out loud is that I was scared to.  I was scared to use up my one BIG thing from God b/c what if kyle needed it.  what if i only got one request - this was nothing like i had ever been asked to pray before.  but i knew God was prompting me.  Through fear and obedience and love for this little boy I barely knew - I prayed.  I begged God to heal him - to make him whole - to give him to his beautiful parents. When I came out I talked with john and he had been praying with Matthew's dad.  I asked john if he asked God to heal him - he said yes.  I remember the feeling that came next - I KNEW God was going to heal him.  all i knew of God said he would..... all my confidence in what I knew of God and prayer said he would.

Matthew died later that night.  We came in late the next morning and his mom and dad had gone home. 

this little boy, this tiny little boy - in 18 days - changed my view of the ONE all consuming God.

I felt so angry, so confused, so scared - all that I knew of God had just betrayed me.  And this was the God that I had to rely on to heal my own son.  He left me.  All I had known of him from the past 18 years of desperately seeking after him was all gone.  I didn't understand.  It was beyond understanding, it was all consuming fear.  I felt abandoned and alone by God.  

I continued to beg God for kyle - but fear overtook me.  i could not and would not pray for anyone or anything else.  I stopped putting my hands on people when I prayed - I was so angry - not only for Matthew's life but very selfishly for mine.  God had left me and he hadn't just left me in a normal life - he left me needing his healing for my son and so many others in that NICU - he left me married to a minister (we were supposed to tell others of his goodness?) - he left me administrating a ministry - with a house full of people (my church) that I was too love in him.  I couldn't do it.  I shut down.  and when I did this - the loneliness and the darkness crept in.

If you have read other posts you will remember 2 other huge moments in this journey that led up to this questioning of my faith - my questioning God.  One was  a little boy named Marshall Brown (has there ever been a cuter name?).  Marshall's dad gave God glory and praise every day of his life.  He was so vocal in the NICU about God's purpose and plan.  He was so positive in spirit and so encouraging - always giving God praise for each event - good and bad!  Marshall died shortly after going home.  another was my prayers for Kyle's brain - begging for protection from a bleed - I prayed this the day he was born and continued fervently. I don't even know how I knew what an IVH was unless God laid it on my heart and mind to pray.  

My faith in God, my confidence in Him was devastated.  did you catch that - I used the words faith and confidence interchangeably and from where I stand faith has little to do with confidence gained from knowledge.  You could also say confidence gained from our senses.  This is NOT FAITH!  so fast forward through 5 months of darkness.  as a mom - I was getting better - kyle is growing, mastering skills, adorable - but I my spirit was suffocating.  and no matter how much I wanted someone to notice, they didn't.  Everyone kept waiting for me to go back to the same old kelly.  ... oh ya we were fast forwarding... sorry... so last week I am at 220 - uh .. if you don't know what that is - you should find out!  and the teacher is talking about david and how he lost his son.  his son was killed (a little baby).  he grieved and scripture says that then (I'm sure still grieving) he got up, washed himself off, and went to worship.  He worshiped God not b/c he felt like it and not b/c he had anything to be happy or even thankful about at the moment but b/c God's character deserves it.  He is worthy of it and we were created to do it.  

I felt so hurt by God; betrayed and abandoned.  but in all actuality I was not betrayed by God - he was who he has always been - I was betrayed and abandoned by my perspective of God.  a perspective in which i had based my confidence.  I could not sing to him - I could not listen to his word (scripture) with out anger.  It had been months since I communicated and listened - I just shouted out my demands for kyle.  and anytime a loved one needed prayer - i would threaten God - it was out of instinct - my prayers would start off "God if you don't..."  and then I would realize it was going nowhere and so I would stop.  So by the third day of 220 - after so many tears and so many thoughts and so many times balled up begging God to just make me back into who I used to be - i finally stood up, washed myself off and went to worship. Physically what did this look like - well, many times when I sing worship songs to God I will stand up - out of reverence, out of obedience, out of awe and love for who he is (if our president or king walked into a room - we would stand - same thing for me in obedience).  so what that looked like is my posture changing.  i got up - literally stood up, i washed off - i decided to stop living in grief - not that I am not grieving (what I am grieving - ooh that is a whole other blog!)  and then I worshiped.  now it is still hard to sing songs of adoration right now - but I consciously working to read truth about God - listen to truth about God and remember that so many times our perspective of God is who we are communicating with.  Our perspective of God is who we are serving.  Our perspective of God is who we are worshiping.  this is dangerous - if you do this you will most likely end up one day sitting in devastation.  if you are lucky.  that's right... b/c now I can begin to know God.  instead of only knowing my perspective of Him.  

There is one final part of my week - but for another day...

So Matthew wrecked my view of God.  He wonderfully and perfectly destroyed the perspective I worshiped.  I am now getting to know God in a new and beautiful way.  What a tiny little man that accomplished such a great big job.  He touched everyone that met him - I remember the nurses and how much they loved him and this family.  I know his mom and dad would give anything to have him here with them.  I can not even fathom how much they miss him.  I would rather have kyle heathy, whole and restored today than anyone anywhere have learned any lesson from his little life.  How much more must Matthew's parents feel that.  But I share this none the less as an encouragement.  I wear Matthew's and Marshall's names around my wrist every day along with a scripture. I will always remember their gift to me.

I have been in such a dark place - but I am thankful now for the faint shadow on the wall now.

John and I have been praying this one thing since kyle's birth over and over - God, would you make us thankful for our journey.

i am getting there.  

to Matthew's mom:  you are a dear friend already and your every word and every chosen smile is an encouragement to me.  thank you for teaching me and thank you for letting me share this.


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!