UPDATE!

today is my first day since kyle came home that both boys are off to school and we don't have a doc appt. 

so - I have worked on Medicaid - ahhhh!  interviewed several pediatric physical therapists, made more doc appointments, read 2 studies given to me by one of our attendings in the NICU and now I am sitting down to update on kyle.

no profound dramatic thoughts today - just an update!  

Kyle is 17 1/2 inches long, weights 6 lb 4 oz.  He is one week corrected and 4 months by his Bday.  He eats 3 1/2 ouces 8 times a day.  he eats every 3 hours in the day time and every 3 to 4 at night.  most nights he makes is in 4 hour sessions.  John does one feed every night!  This is amazing!!!!  Kyle does seem to have his days and nights mixed up a bit - no more or less than my other two did.  it is funny to me though b/c he is not "really" a new born!  anyway - he likes to keep us up at night for now!

I think it was all the partying that he did with the night shift in level 3!  but I won't point any fingers!!!

He grunts and groans and wiggles and makes all those cute little newborn type noises!  He does wake up every now and then during the day to play and watch and be read to.  yesterday he laid in my lap and watched jack and I play race track with the train set!

He loves to be in the swing but breathing wise can't seem to handle to much of the bent sitting up position so we also lay down alot.

He still has a clot in his heart - haven't got the official recommendation about that yet. He still takes a shot everynight - I DO NOT DO THIS - it is all john - I am not nearly as tough as i thought!  and still does have a hernia and will have that surgery some time in the future.  He is developing an umbilical hernia also - they will probably take care of that too?!

He is so cute and so cuddly!  Loves to be held!  he loves his bath time

Here is a new pic.  

i am begging to realize what a miracle he is.  In the moment this is hard to see but when I have a chance to step back and realize that I have a 6 pound 4 month old that was healthy enough to come home from the hospital on just one med that leaves us in a couple of weeks (hopefully!!) and gets all of his nourishment from a bottle - amazing!  He really is a miracle.  The courage of a lion and the spirit of a king and the goodness of our God.

wow.

Please keep praying for kyle's brain to be fully restored!  

Thank you all for your help on the medicaid stuff.  a form was filed wrong by our medicade case worker causing it to not retro activate.  so there was no coverage from kyle's bday until 11/1.  This is a set of 10 very expensive days.  a form has now been filed to try and correct this but even though it was  medicaid case worker mistake they can't just go back and correct it.  so it is a wait and see for now.  I don't see how they can hold us to that or keep us from the benefits.  any thoughts are welcome.  also any thoughts on getting babies to wake up in the day and sleep at night?  hahahaha!

 

We really are doing great!  

thoughts, thoughts, more thoughts...

I have them all the time.  finding time to sit down and put them to paper seems impossible.  But I know one day I will so want to be able to look back and remember the moment.  I know I will remember the experience but I want to know it and for kyle to know it in the moment it was lived.  so I'm still struggling to find time and energy to do it.

today i got a comment.  one that made me gulp in horror as I read about the baby's brain bleeds but one that helped me remember what we need to be to each other.  I had a doc visit with kyle yesterday - great news - his eyes are still perfect!  so perfect she is "shocked".  and wants to see him in one month just to be sure!!!  she couldn't believe it.  but she did mention a concern neurologically.  this is the stuff that gets me.  so my day of joy took a turn to a day of anxiety, stress, reflux or an ulcer I don't have a clue but it is ridiculous the way my body is responding to fear and stress these days.  so then came the fight -the fight to rely on god.  oh and I can't tell you how many disabled and mentally retarded people and kids! that i ran into during my doctor's visit.  makes the fight that much harder for me.   the fight against fear that is.  anyway - so I talked with God much yesterday and fought to stay focused on his promises to me.

that comes the hard part - I questions the promises.  I think it is that underneath whisper my friend told me about.  the whisper of the enemy.  i can't even get one doc visit with all good news - b/c what i want is a doctor to assure me and what my God wants is for me to rely on him only.  hmmmm...  I NEVER thought it would be this hard.  

my mother in law said to me the other day that I only need the faith of a mustard seed and I replied back "it's a good thing b/c that is probably all I can come up with."  and as I think I have been realizing what i think that statement means.  not that we can skate around half way believing but when we are so desperate so scared so sitting in humility with no one else to grasp our faith from - we can turn to God with the little bit we have left and it will still be enough.

This makes me say - our God is good.

oh - back to the comment I got today - a young girl - a young mom - too afraid to visit her 26 weeker twins - both are bleeding in the brain.  I want to take your sweet face in my hands young mom and say to you  - what little you have left in your spirit - it is enough.  fight for your babies fight for their spirit and yours.  Our God is good.  you are not abandoned.  even though you can not take in what I am saying it is truth.  I am just a few steps ahead of your life and looking back and still looking forward - I understand - my spirit hurts and groans for you.  I will intercede.

I have lots of thoughts to share about kyle coming home.   I am thrilled, excited, challenged, overwhelmed with joy - so happy to be mom to all three of my boys.  sitting in the rocking chair with kyle listening to jadon and jack in the back yard.  it doesn't get any better than that!

but it seems in an instant or in a word from a doctor - all of it turns to fear and churning.  for several days I couldn't remember why I was so upset - I was living in my bliss and praising God for my sons.  I want to be back there.  the only think I know to do is fight and allow you ( you know who you are) to fight for me.  please.

another doc appointment today - cardiology!  we will see how this goes and when I can start sleeping, tear myself away from candy land, legos and bike riding in the cul de sac - I will begin recording my thoughts again.

first:  two questions - anyone that commented earlier on our medicaid blog stuff - I need to ask you some questions.  We are having a very hard time getting medicaid to cover kyle - we did hear from lots that his docs would be covered but we are having a hard time making them do it - lots of forms that don't seem to be working so for real - will you email me if you know about this.  also- we have LOTS of visits and therapies coming up - I would love input on physical therapists - I will be interview some soon.  my email is kellysherrill@mac.com

please keep praying for Kyle - our road is at an amazing place - I am realizing what a miracle kyle is.  I have a 6 pound (yes - I said 6!) 4 month old.  and he is at home with me!  on only one medicine that ends March 4th.  this is a miracle.  He is a courageous lion - and will be a king!

please keep praying for God to restore his mind to perfection!

On the way home!

Kyle all buckled up and ready to go!
Saying goodbye to all his friends at Hermann Memorial Children's Hospital!  don't worry, I'll be back to visit.
First bath time at home! Kyle seems to love it here!

Thank you for all of you that are praying for us.  I can't even describe our emotions to have kyle here in our home.  "right" might be a good word.  no matter how hard, how scary, how SLEEPY, it is right!  I'll post more later - lots to do - including sleep!

We are about to head home!

It is 1:31... day of life 114...

we are about to leave.  We will be loading up soon.  Deb, one of our awesome nurse practitioners, is in our room right now talking through some do's and don'ts, etc... helpful hints,...  orders, etc...

She is great.  We will miss all these people immensely... Valerie the NP, Kelly the NP, Brenda the NP,...  all these people have become so important to us... bittersweet feelings... they are so great.

We got to hang out with Coy's fam a little today.  That was awesome.  We are leaving behind some great friends here,... keep praying for us and Coy (and his fam)!

We know Coy is in great hands, though, and look forward to the day where we can celebrate

him going home with Chris and Ann Marie as well!  

Day of life 114... on Oct. 22, There was less than a 1% chance of that happening.

Here we are.

God is good.

No matter what struggles, no matter what crisis of faith we face sometime...

God is good.

We will write more later.

We are heading out!

Day of life 113

Well,... here we are... on the eve of going home with Kyle! Can you believe it?  I hardly can't yet. I don't think it has set in... I remember sitting out in the waiting room on day 2, watching a family leave, and thinking, "will that ever be us?"... well, here we are!

I flew in from a whirlwind nashville trip to run a few errands, and head up here to children's memorial hermann... Kelly has been here all day pretty much getting trained on a million and one things that has to be known before leaving.  Tonight, we are in care by parent, where we spend the night in a ronald mcdonald room with Kyle before going home-- this way if we have a question, we have nurses/doctors etc close by. Poor Kyle is having a little trouble adjusting to formula, which means he is having a hard time going #2... not fun.  He is not very happy about it right now.  Hopefully, he will get out what is frustrating him so we can all sleep a little. I have watched this kid take the greatest naps and have great sleep spells in the NICU, so I KNOW the kid can sleep with the best of 'em... NOW is not the time to begin bad habits of wanting to fuss all night,... but what a welcomed fuss it is.  Jadon and Jack are staying with grandma tonight and tomorrow so we can get somewhat adjusted at home.  I know Jadon is excited. Poor Jack doesn't quite know what is coming yet, but I think he will be fine. He is always great around our little friend Sidney, so hopefully, he will welcome Kyle as "brother" and not that name we talk about associated with where mom and dad go every day!  Kyle is looking really good.  I hope to be able to post some new pics up tomorrow.  He is getting big! We go home on a little oxygen tomorrow, as well as an apnea/brady monitor that is LOUD LOUD LOUD... but that is ok,... I am thankful we are going to have it at home so to let us know if Kyle needs help.   

I ran into an old NICU friend today! It was so great to see them out doing real family life away from the NICU!   I am somewhat in a very quiet mood tonight however,... I think of my friends who have lost their little ones up here,... and won't be able to do the whole "go home" day... it brings me a deep sadness for them and causes me to pray even more for peace in their lives.  

Thanks to all Kyle's girlfriends up here!  You know who you are!  And, rest assured,... he will miss the late night holding/cuddle time with you too!  SO... come over anytime and hang out with him!  He/we will miss you all.  That is one hard thing about tomorrow,... leaving so many of you doctors, nurses, nurse practitioners, therapists that we have had the pleasure to get to know and deeply care about.  We can't thank you enough...

john

Thank You ...

Thank You just doesn't seem to really mean enough.

I can't find the words in the human language to express the deepest

gratitude I feel right now to certain people.

We (kelly and myself) will acknowledge many of these over the next few weeks,

but I must start here,... because today, I had the best intentions to call up

there and talk with this person, but life in the studio goes by fast and slow

at the same time,... and as time crawled by all day in our cave

of creativity,... I finally looked up and it was 7 pm... missed my chance...

so, please, if you read this...

Brandy... I can not begin to explain to you how much we are so thankful

for you, your expertise, your care, your love, your compassion, your talents,

your faith, your encouragement, etc etc etc etc over and over and over

again, I thank you.   I know that memorial hermann children's hospital

will not be the same without you, and you will be missed in a big way.

I pray the best for your family, your marriage, your practice,... I pray joy,

peace, assurance, and blessing to fall upon you and steven.

I wish I could have seen you today, on this, your last day... but know,

you were in my thoughts, as you will be for the rest of my days everytime

I look at Kyle and know that you were instrumental in his physical well being.

That means more than the world to Kelly and me both.

Again- thank you seems so weak, but it is the best I got right now.

(maybe one day if I am independently wealthy, I can buy you a ski house)

: ) that would be cool huh??? PS don't count on it,... I am in ministry and a

musician... (sure fire way to absolutely assure you will be poor!) haha!

We love you much!

John, Kelly, Jadon, Jack and Kyle!

More than enough - Healer

if you ask my husband if he want the good news or the bad news first he would say bad.  I would say good - he wants to get the bad out of the way - follow it up with good and end on that note.  I want to hear the good and then maybe the bad won't seem so bad.

john wins - bad news.

I spoke with the neonatologist in charge of the brain MRI study kyle is a part of.  He had kyle's results.  they are not what I had hoped.  The results were worse than the initial report.  I am struggling a bit on what to share.  this is my journal but I do realize that it is public - I will.  for the sake of the mom that is searching for some one ... anyone to identify with.  that is a terrifying feeling.  But I just need some time to process.

even from out of town john is everything that I need.  He shared some things tonight with me - some through words, some through songs...

Nothing is impossible for you

I BELIEVE  your my healer

I BELIEVE you are all I need

I BELIEVE your my portion

I BELIEVE your more than enough for me

I confess I think i believe this b/c there is nothing else to believe.  i have wanted from day one for some doctor, some nurse, some parent, some prophet... anyone, anywhere to tell me... to assure me that kyle was going to be okay.  my okay - not the politically correct okay that everyone reminds me of, not okay for where he has come from or what he has been through.  But MY OKAY.  perfect in every way with no limitations!  but now here I am - grasping for an emotion that makes sense - every doctor has come and many have gone, the test are done, the reports are finalized.  Kyle had a brain bleed.  I begged God to protect him from that.  It happened, I begged God for it to not grow in degree - It didn't stay a grade one - it progressed to grade 3, It didn't disappear on the ultrasound, his MRI didn't come back completely normal and astound any doctor.  IT DIDN'T HAPPEN.  I begged and begged and begged.  

All I have left is you God.  I am so broken hearted to confess that I have relied to you last.  I really do believe in you. I have watched you heal under my own hands - but then when it got too real, too close to home, when it started to hurt too bad and I got too scared... I turn and run to looking for a doctor or test or picture to give me back my hope and peace.  so hear I am.  I will believe b/c I have too - I mean I want to - fear is so huge, it can envelope my faith and my knowledge if I let it.  So with every breath I have I will fight to keep my faith.  I will proclaim out loud that I believe.

I do believe but it's like I have to claim this over and over and over out-loud to keep believing.   I am just so scared that I will believe and rest and then I will have been wrong - I want to go back to that romantic faith I had in my mysterious Father.  I don't know how though. 

I am very taken back by all of these emotions - the things the doctors said to me today were hard to hear, hard to keep my composure, hard to breathe... just hard.  My thoughts and prayers are endless right now but on to the good news....

Kyle is coming home.  Friday .... coming home.  this friday, Feb 15th.  this was his due date.  I am excited, I am nervous, I am scared, I am angry, I am overwhelmed.  my head hurts so bad from crying all day that it physically hurts to look at this screen - BUT - Kyle is coming home.

As of this morning at 11 a.m. Kyle was going to be there until March 15th or so having his surgery.  They decided this a.m. to let him do the surgery when he is bigger and off oxygen support.  5 minutes later I was talking with the MRI doc.  that lasted almost an hour.  5 minutes later the team walked in and said ..."can you do care by parent thurs?"  I said "sure".  they said "home on friday?" I said "sounds good!"

i didn't tell them that john was out of town until thursday about 6 pm and then out of town all weekend.  I didn't tell them that I need a bed, and a car seat, and all his clothes and sheet washed and my room set up for him and to learn how to use an apnea monitor, pulse monitor, oxygen tanks, give a shot everyday, reduce a hearnia.  I needed to buy bottle nipples, diapers, a thing to bath him on.  I didn't tell them that I had no one to keep my boys to come up and do all this, i didn't tell them that I was scared to death to leave them.

OVERLOAD!  I would like to say that I swung into high gear made several phone calls and all is working.  Caroline may never sleep again!  haha!  but it's happening - I have people helping me get it all ready with john gone and found some really cool folks to hang out with the boys.  Carol is an organizing gooroo! among other things!!!  and john got cancelled on for this weekend!  never thought that would be a blessing in disguise.  AHHH I still have to fix our medicaid problems we are about to loose it and we haven't even gotten it fixed yet!  and .....

i gotta stop thinking - my head is going to explode.

God has delivered my son.  I think... no.. I really do believe that God has healed Kyle.  i don't understand his way or why we are going to have to go through so much or why we have had to go through so much - I don't know how we are going to do this - physically, financially, emotionally, realistically. 

everyone says God sees the big picture and we don't.  I feel like I am staring at that bottom left hand corner part that is all white and so there is no way to even guess what it is a picture of.  beautiful, mysterious, just to real right now to be romantic.

I believe your my healer.

Your my every hope

calm my raging see

walk with me through fire

you heal his disease

i trust in you

i trust in you

I believe your my healer

I believe you are all i need

I believe your my portion

I believe your more than enough for me

Jesus you're all i need

nothing is impossible for you!

nothing is impossible for you!

nothing is impossible for you!

nothing is impossible for you!

you hold my world in your hands.

MRI results

Greetings from Nashvegas...

as I am out here in Nashville working on the new CD, Kelly is at home

getting all sort of news at once... we didn't really expect all to come in like

it has, but nevertheless, here we are,... so, we deal with it.

Good news and ?? news...

Good news is... Kyle may get to come home MUCH sooner than we thought.

Bad news is, ... surgery for his hernia/circ will be a little later, and we got MRI

results back that weren't looking as good as we originally thought.

I am torn because I really want to be home with Kelly right now, but feel

stuck working.  It is expensive to be out here, and time is of essence,...

so we maximize every minute.

Please pray for Kyle's brain.  Pray for God to touch the areas that doctors are 

seeing that trouble them.  Pray for God's supernatural intervention.

This will be a long term prayer... we will have to wait and see how Kyle develops

over time... 

Thanks

john

A favor - Kelly

I got this email the other day from a friend - will you all take a second and vote for our city!

Memorial Hermann the Children's Hospital (HOUSTON) is in the running for a new play center from the Starlight Startbright Children's Foundation. It just takes a second...... All you have to do is click the link below, and vote for Houston. Please take the time to do it.  A good smile or laugh can go a long way in a seriously ill child, what better way to do it than with a fun center!?!?!?!?!? The voting ends Feb. 29Th and you can vote once a day!! Thank you all for your support!!! (Feel FREE to forward this on to others!!!!!)

www.colgate.com/app/Colgate/US/Corp/CommunityPrograms/show-the-love.cvsp

thanks - this hospital means so much to us.  I would love to do whatever we can to help.

Kyle had a great day today - He is now on "ad lib feeds".  this means he can eat how much he wants when he wants.  He is eating about every 3 to 3 1/2 hours and he is eating 70 ccs.  you read that right!  70 ccs.  the other day he was eating 46!

Kyle is doing so good!  Today i got to hold him for about 4 hours and feed him twice.  he had a great nurse today and another good one tonight!

Please keep praying and asking God to restore Kyle - to restore his brain to perfection!  he was so sweet today!

MRI Today - Kelly

first let me say that kyle had the most adorable awake time today!  A friend that I met in the NICU came up to hang out today.  We spent about an hour just watching kyle b/c he had the most amazing awake time!  He was unswaddled, in his little outfit, just kicking, moving his arms around and looking at his toys.  we got out different toys and he enjoyed each one.  Really - he laid there about an hour just looking and playing and listening to us visit.  It was so much fun!

then we got ready to go to the MRI.  It was harder than I thought it would be.  the last time I saw him in that transport box was not a good day - it was the day he was born and he was in plastic wrap headed to the medical center.  it was hard to watch them put him into the mri - all the stuff they had to do to help him lay still and calm and not hear the machine.  it was REALLY hard as I started seeing brain scans pop up all over the screen.  I didn't realize it would affect me.  but the fear that I felt the day we did the brain ultrasound came right back.  God did send Leah with me - she was the transport nurse that took kyle down to the MRI.  She was great - positive, honest, caring, protective, detailed and AMAZING at her job.  not to mention she is a mother of 2 also!  she was amazing.

I was so unsettled.  We will not have results until tuesday however he did say he would comment a bit just on what he saw.  Kyle's ventricles are enlarged still.  The right one looks pretty good but the left on still has blood in it.  This is not a problem, it will go away.  The problem is the damage it can leave when it goes away.  Kyle's right ventricle looks good so far.  His left one is still enlarged.  Kyle has lost some of his white matter (brain matter) around this area.  He is showing premature signals (this goes along with the damaged brain matter).  What this means - of course they don't know.  John and I are used to this buy now.  They did give us some bits of info about cognitive and motor developmental delays ranging from mild to medium in severity.  We will know more on Tuesday.

I believe God will heal kyle.  I believe what I feel is the promise he made to me or the hope he put in me for kyle.  I believe the vision he gave my friend.  I still don't understand why he delays or I think maybe i just think he delays.  I still don't understand why he doesn't dramatically do what I ask b/c I think it would be great display of his healing power.  There is still this fear, this underlying worry, unbelief maybe.

A friend of mine tonight talked to me about that being the whisper - the one underneath all my belief that tries to convince me of a lie.  from evil.  she reminded me of the vision that God gave to her and to me when Kyle was born.  My hearts desire is to see him run and play in the backyard with his brothers.  what joy there will be in my heart the day I see that.  the day the whisper goes away.  I was reading a woman's blog tonight about her son jack.  she talks about a feeling in your gut.  no matter what you are doing - crying, laughing, playing, singing - whatever - a feeling that never goes away - I know one day it will.  what joy.

I promise to post more when I know more.  kyle was pretty tired out after his big field trip!  He had a great day eating today and they moved him to add lib which is bottle feeding as much as he wants and as many times out of the 8 as he wants!

Maybe he should be a piglet instead of a lion!

A good day - Kelly

good day today!  Kyle was weaned on his oxygen today.  this is a new way of weaning for us.  they moved kyle to 100% oxygen and then took down his liter flow.  I don't have a great understanding of it - hard to get used to b/c he is saturating at 100% most of the time, which until now was a big "no, no".  but I trust my NNP. She says that b/c he is on such a low flow (1/4 liter) that it is okay for the oxygen to be at 100%.  They are beginning to say that kyle will go home on oxygen.  i am still asking God for a quick growth of healthy lung tissue so that he does not have to.  But contrary to what I used to think - my prayer life is not actually God's to do list and now that I know that he can be glorified in ways other than saying yes to me... he might come home on it.

anyway - they wean the liter flow like this to decide what he will come home on.  however - we still have about a month down there.  He is feeding about 5 times a day by bottle.  they actually call this nippling.  the tube feeding is called something that I can't spell - sounds like "gavash" sort of - ANYWAY the point is that now when I am talking to normal people that do not live or work in the NICU and I talk about how he just needs to be "nippling more" or "he is only nippling 4 times a day" - they really look at me funny and then I realize that I keep saying that word and they probably think "WOW I can't believe she just keeps saying that!"  anyway I am trying to watch or at least explain my new lingo!

so - kyle is nippling around 5 times a day and he needs to get that to 8.  when he does we will do surgery and then after that wean from the vent and get oxygen back down - feeds back up and we will be on our way home!  woo hoo!

Please ask for God's favor, blessing and healing on kyle!  God has already restored him in so many ways.  The palm of my hand can fit and cover his whole head - so I covered his head tonight for probably the 1000th time and prayed healing over him.  I begged God to restore his brain to perfection - to give him the very mind of Christ - perfect, whole, brilliant, full of coordination in every way.  

Here's a story  - Tonight the people that fortify the milk when to the milk freezer and saw "oh, i don't have enough milk to fortify for baby sherrill" (that is what they call kyle if they don't know him at the hospital).  and then instead of letting the bedside nurse know so that she could contact me to bring more - or I don't know maybe they could have done it when they noticed it was low 2 days ago?  but they did not so even though I am there EVERYDAY - and have always had milk for over 100 days in a row -they didn't think that was necessary.  I think the quote was that it was not their job.  WOW!  so the last time this happened.... yes i did just say that - this has happened before - I drove home and picked up 170 bottles of breast milk and drove it back to them at 2 a.m.  and let me add in they told me prior to running out to stop bringing milk and store it at home b/c I had too many bottles.  they didn't have room.

back to story - well this time we are days away from switching him to formula or starting the switch anyway.  so I was assured by several docs and nurses that we could just start now - so I called john and we decided that this was okay.  So join me tonight if you would in praying for kyle's little belly and intestines that he would digest this new milk wonderfully.  tomorrow he will get some more breast milk but I only have about 2 week supply left so he will be on formula soon.  This is scary to me, docs and nurses I really trust feel confident.  and those of you that are judging me right now, you can stop - you don't know even 1/8th of the story.

sensetive? ya - I am.

Tonight I was holding kyle from 7:30 to about 8:00 pm and he had pooped 3 or so times in a row.  and I had already changed him twice - oh and the concerning poop from yesterday they are thinking is the vitamins that they have to give to all breast fed babies.  Kyle's tummy doesn't like them too much.  His stools should be yellow seedy but they have been more black/dark green and watery.  (sorry if that makes you want to vomit!  two words -"my journal".  also a good thing to remember when commenting on other's blogs.) anyway - so when I went to change him AGAIN - his nurse, who is great - her name is mallorie (sp?) she is great!  his night time primary!  so she said we could just go ahead and bathe him.  this is one of my favorite things to do and he was so upset during the bath - sucking on his fingers and hands the towel as I tried to dry him!  then I dressed him and got to give him a bottle.  I thought he was being fussy and squirmy before and during the bath b/c his tummy hurt - NOPE - he was so hungry.  I gave him his bottle after the bath and he scarfed it down in 15 minutes.  I learned a new way to hold his cheeks and chin and that is helping!  like I said mallorie is amazing!  he ate and then crashed - the bath wore him out.  but we had so much fun today - he was awake so much and just looks at me and listens so intently.  waves his little arms around and stretches.  then tonight we got to snuggle for about an hour after his bottle.  he is so sweet and LOVES to be held.  his level 3 girlfriends still come over and check on him and hold him sometimes!  I miss them.

we had a good day today!  big day tomorrow!  I will post as soon as I can!

Catching up - Kelly

I was just staring at the picture at the top of our blog.  that lion was bigger than he was!  He is such a courageous little fighter!  He has grown so much - 1 pound 3 ounces to under 1 pound to almost 5 pounds!  I really can't believe it sometimes.  other times I really do believe that God is doing this.  that bipolar thing again.  I read a book one time or heard someone say that they wanted to get to the end of their life and turn around and not be able to see how they got there; not be able to understand it.  that statement was a big turning point for me.  It was part of me realizing that I did not want to have some master plan and follow it to a "t" and then get to the end of my AMAZING life and be able to explain to someone exactly how I did it.  I would rather live thy mysterious but perfect life God planned for me.

I do still want this and believe this but, I don't know, sometimes it is not so romantic an idea in real life.

so john is out of town.  he is gone for til friday at 9 am then leaves again at noon then back on sunday to leave on monday.  I am glad for him to be back at work.  going, pursuing, writing, working, talking, praying - these are what make him tick.  sitting ... not so much.   mr. mom - not too often.  his writing is going well.  I miss him though - not just his help.  It is hard to juggle with out him here - he does SO much.  I also just miss him.  the one person at the end of a day that I can talk to - not guarded - not trying to be positive so people will keep praying - not trying to be this or that to someone - just be me.  He is perfect at that - letting me be me.  hurt, sad, lonely, tired, mad, or happy with out guilt.  I miss him.  so do the boys.

kyle is doing good!  he had an eye exam today and Dr. Hittner had to leave quickly afterwards so i did not see her report but she said ... and I quote... "perfect, they are absolutely perfect!"  I was so happy to hear that!  his eyes are great - i'll know more details tomorrow when I see the report.  He did have a yucky diaper today - I don't mean like gross diaper - I mean concerning.  They are going to watch it till tomorrow and see what he does. He was pretty fussy yesterday - we are praying for him to stay infection free.  the is a big deal.  sometimes I feel like people think b/c he is alive and b/c I am not blogging horrible things all the time that we are home free.  My glass half full self would like to portray it that way - but kyle NEEDS to stay infection free.  They cut his bottles back a bit.  He may be getting tired or may just not be catching on to how to suck, swallow and breathe all at the same time yet.  It is a back and forth thing.

The docs have decided to do the hernia surgery and circumcision before we leave to go home.  Some docs wanted him to come home and get bigger - but we decided that we would let him get as big as we can and just before he is ready to come home we will do it at MH Children's b/c then his team of docs are the ones that will work him off the vent if need be and get him back to feeds.  They know him and care about him.  This is really scary to me - Kyle is labeled with RDS and BPD - respiratory distress syndrome, and bronchial pulmonary dysplasia.  He was also on a vent for 8 weeks.  I just don't want to see him go through that again.  I told the NNP yesterday - now this is a routine surgery right?"  I was informed that NO surgery in the NICU is routine and does have risks but they will do a great job.  part of me wants to freak out but part of me wants to say "that is just the way you have to be as a doc."  So - My hope is that he will come back from surgery to level 2 and off the vent!

Kyle also has a clot (or scar tissue) in his heart.  He gets a lovenox (sp?) shot every night to keep this from growing.  His NNP is not sure if we can do surgery on this.  so not sure how these two will work together.

The biggest thing coming up is our MRI.  this is friday at 3 pm.  the closer we get the more stressed I feel.  Sometimes I feel so convinced that it is going to be perfect b/c God is healing him.  but I remember feeling that way when we found out about his bleed.  I was so taken back.  Physically terrified. I just don't want to be there again.  I know God can heal him - I know that in scripture it was faith that made some people well.  but I have watched my faith and begging not turn the answer I wanted so many times in the last 3 1/2 months.  this gets confusing.  My faith or might I say belief in who God is, who the bible says he is has not changed.  I am just (I've said this before) learning about who the scriptures say he is vs who my American generation has told me he is.  so please pray and ask God to fulfill the promises that many believe he has made to you.  so many have confidently told me that Kyle is going to be fine - good - even a king.  a great man of God.  I believe that - I just want the fear to stop here.  I really want a good report.  The neonatologist that is doing this research study that kyle is a part of will be in the room and they will let me in the room too.  I am of course going to ask 100 questions - I'm hoping for some answers.  big deep breath!

Kyle had a good night last night – he had his primary night nurse, which is great!  We really like her!  I have not even gotten to know her but she came highly recommended by our fav level 3 nurses – so she must be good and I think kyle likes her.  And today we have our daytime primary!  I really like her too – I have gotten to know her – she is very detailed, very thorough, and even sweet and talkative to kyle!  We have had another nurse that is now our daytime primary but I really like her – can’t sign her up b/c she has a student with her sometimes but she is good too!  So the nurse thing is getting better!

Please pray for Coy, kyle’s best buddy.  He is doing good on CPAP, and got his PICC line out yesterday.  Pray he stays infection free.  He had some desats yesterday that were concerning to his mom.  I am learning that we are a pretty good judge of these things.  He was not acting like himself and he has been off antibiotics for 2 days.  HE NEEDS TO STAY INFECTION FREE!  Ask the Lord to boost his immune system.  Also Coy had an eye report that was concerning.  Please ask the Lord to heal him.  These little guys have so much to deal with – would you ask the Lord to restore his sight to perfection!  These are brave prayers to pray and it is confusing to pray and pray and not feel like you have an understanding of it anymore – but God is God and God is Good and He is faithful to his character always.

Life in Level 2! - Kelly

Life in level 2, yes... level 2!  Kyle moved to level 2 on monday.  I think they were waiting for me to be ready. nurses kept dropping hints that he was only in level 3 b/c the census was down.  meaning they have lots of room.  Also one nurse said he was to the place where level 3 nurses would not want to have him.  They like the kids that need lots of acute care.  In other words - Kyle was doing great! So on monday I went down there (by myself) John was out of town with work and our NP, Valerie (amazing!), asked if I was ready to move to level 3.  I said sure!  so within an hour - we were in our new room.

I think our nurses (even thought they love kyle) were ready.  Many of them had probably had all they could (over 3 months) of ME for a NICU mom!  i am pretty high maintenance.  I have spent hours a day looking kyle over and for every 5 minutes I spent looking at him I would have 1, okay maybe 2 questions.)  I don't think they are used to parents that are quite so involved.  Now don't get me wrong - they loved me and john being involved - just hard to keep up with lots of questions and requests I bet.  So off to level 2 we went.

1st things 1st.  Culture shock!  Sounds crazy I know, but it is true. This transition has been harder for me than is has for kyle.  I thought level 2 would be filled with gooey nurses that would oooh and awww over kyle, feed him, change him, make his bed perfectly, talk to him during his bath... you know instead of intubating, taking blood, positioning, re-taping CPAPs, giving meds and so on!

however, I must say that no one talks much, there is only one nurse in our pod (one to 4 baby ratio).  They do stay pretty busy - but it really does seem like the personalities are so different.  Needless to say - I don't like it.  I did wonder the other day if they do that on purpose so the parents will be more involved.  I do not have the confidence level that when I am away my child is being loved on!  I sadly enough also do not have the confidence when I am away that my child is getting as good care as when I am there.  All my level 3 favs have said I need to give them a chance to get to know Kyle and get to know me!  Maybe this is true - but for the first couple of days Kyle would de-sat to about 81 or so and they would run over, ask me 10 times if he looks dusky and then before I could respond or tell them what I thought they would turn his oxygen way up!  I am guessing most kids don't de-sat over there or this nurse isn't very intuitive.  actually it was 2 nurses now, maybe 3 depending on how much grace I want to give.  which honestly is not much when it comes to the well being of my child!

anyway - I will say to anyone reading my personal thoughts - Childrens Herman Memorial Hospital is the BEST place for your child to be should you need it.  We have been to both the children's hospitals and even with these 2 nurses that I have not been thrilled with so far - AMAZING hospital!  In the nurses defense I am assuming that the goal is that Kyle would not ever de-sat - I think lots of the kids over there are on room air and so they sat 100% on their own and if they de-sated it would be a big deal.

Thankfully, our NPs are amazing!  Attendings too!  Our NP Debbie was in the room when Kyle de-sated to 82 or so and she turned him from 30% oxygen where he was to 60 or 70%.  So she had a talk with the nurse!  I am so glad she was there.  Then the next day was the same so our other NP Valerie wrote an order to if Kyle does de-sat to give him a chance and then only turn him up by 5% at a time.  SHE WROTE AN ORDER TO HANDLE OXYGEN!  I don't know - something in nursing I would think would be intuitive.... anyway- our NPs are amazing.  they have been the constant through Kyle's care.  Especially Valerie.  She has been there with kyle from the beginning.  She gave us such grim statistics and seemed to encourage us not to get too attached.  I don't think she thought he would make it.  I have since learned that I don't think there is one person in there that thought kyle would live.  and not only live, but he is doing amazing!  Exceeding just about every expectation of a 23 weeker.  He has had some huge hurdles but really seems to be doing good!

So I met with a charge nurse yesterday (again - one of the coolest people I know) and she is working to hook me up with some primaries over in level 2 that are great!

Kyle needs it – I need it.

Kyle is really doing great!  He weighs 4 pounds 11 ounces!  He is taking a minimum of 4 bottles per day – and can take more but only seems to do that when I am there and I push for it.  For some reason the nurses don’t want to push him – again – maybe they do not know him.  But if I am there he gets a 5^th bottle feeding that day also!  So soon I’m sure his NP will write an order to increase his bottle times b/c that is one of the ways he comes home is when he is taking all feeds by bottle consistently!

He is doing great at this – it takes him about 20 minutes to finish all his food!

His oxygen flow has been weaned to 1.5 liters and will need to come down to ¼ or 1/8 before he can come home on it.  I am hoping he doesn’t need it but there is a real possibility that he will.  His oxygen requirements are between 21 and 30%!  His hernia is getting bigger and will have surgery but they are not talking about when yet – it will be the last thing they do b/c they want him to have as much weight on him as possible.

Kyle will have his MRI this Thursday.  I will be in the room with the neonatologist so maybe I will get some insight into what he is seeing.  Other than that the official results take some time.

Kyle is having some really great awake time – he looks around, makes lots of baby noises and loves to listen to me talk to him.  He is very sweet natured and ADORABLE!  He does get pretty upset when you wake him to change him just before he eats!

Life at home is hectic.  I feel like I am juggling 3 people lives instead of just my own.  I hear people mention so often – you just need to take time for yourself.  Or it is important to take time for you.  Those are unrealistic statements.  It is hard enough to make time for my husband – which he won’t say but I’m not doing a very good job of.  This doesn’t make me feel sorry for myself at all – you kind of just go into a mode of preserving your family.  But for some reason I have this deep feeling others that can not understand it.  Started off as anger and is still a frustration – but more so a desire for all of us to be able to see what God sees in these situations.   Maybe then we, I could really minister to others.  Meaning HELP them in their time of need even if I don’t get it.  A good friend told me that there is a difference between empathy and intercession.  This may be my lesson for these days.   I don’t know that ever could have imagined that someone’s life was like this.  What about kids that have long-term illnesses – I’m talking in and out of hospitals all the time.  And maybe they have other kids.  What about the mother that knows she is not going to live.  It is physically painful for me to be away from my kids as much as I am.  To know that they hurt b/c of my absence.  I can not imagine how these mom’s feel.  A million times what I do.  But still we are the ones called to help them.  How will that woman ever feel peace.  How will my precious friends that have lost their son feel peace.  Maybe just maybe the holy spirit Jesus said would be with us – the one that lives inside us – the one that has the same power that raised jesus from the dead – maybe this has something to do with it. Maybe WE have something to do with it. 

I am having to come to a place of accepting that my life does not look like it used to or like I want it to.  And then I have to find a way to lose the guilt that comes along with those thoughts.  b/c you would not want the other option of not having your child.

I’m working on this!  I am learning so much about prayer – it might actually be more like unlearning instead of learning but it is just as beneficially really.  More specifically I am learning about approaching God.  For me, for my family, and for these others we are called to serve.