Tired on New Year's Eve - Kelly

Here is a pic of Kyle on nasal Cannula. He is so cute and even though he has been looking pretty good he tired out on the cannula today. After too many brady's and too much retracting his nurse decided Kyle needed to be back on CPAP. He was working really hard and by the end I could physically see his right side sinking in every time he took a breath. Misty could hear him grunting which is him trying too hard to create the pressure that keeps his sacks in his lungs open. The CPAP will hold this pressure for him. I am not sure if I am just disappointed, tired or really i think it just upset me to see him struggle. and it is so scary to watch his little body do things that are not normal - normal for him anyway. it is so hard to just walk away and leave him in the hands of anyone but me - his mommy. I was designed to take care of him - i mean if he had been term I would go home and "just know" what he needed. but I don't have the skill or the education or the know how or the ability to take care of my own son. i am so grateful and I am trying to rest in that instead of focusing on the fear. I just think that the instinct to take care of him and the inability to do it sometimes leaves me with fear or worry that might be a better term.

he is in the absolute best hands possible right now. he is with misty and if she says he needs CPAP then he needs it - she knows him. and she cares about him - in fact I asked her to blow him a midnight kiss.

i think I just am getting ready to bring him home - i mean i just want to - I can't wait to strap him on me with one of those hippie papooses and cart him all around the house. I can't wait to snuggle like the lady was tonight at the restaurant with her little one. i'm just ready!

please pray for kyle to get stronger and bigger. they will try him on nasal cannula again when they feel he is ready.

thank you God that kyle is antibiotic free! thank you that he does not have any ivs. thank you that he is progressing and growing. PLEASE protect him. God would you fill Matthew's mom and dad with peace - i don't know how you will do it, but please and even joy. God will you heal Coy from his infections. Thank you Lord for Misty, Amy, Valerie, Brandi, Valerie NP, Dr. Lopez, Kim, Debbie, Carrie, Kelly - would you bless this army that fights for our children.

Nasal Cannula!

Kyle is having an exciting day!!!! His NP moved him to Nasal Cannula today! We will have pics tomorrow so you can all see! I will warn you - HE IS CUTE!! he even has some chub on those cheeks! He really looks good to me.

Please keep praying - this afternoon kyle had 4 apnea spells and brady's. this is where he forgets to breathe and his heart will not beat without breathing. When his heart beat falls then he can't oxygenate his body. It is also really scary for us. Caroine and my dad and james all saw this go on this afternoon. Not fun at all. Our nurses are great and were on top of this immediately each time it happened. This has to stop or kyle will have to go back to cpap. Please pray for his protection and healing in this area.

kyle will be coming off all antibiotics tomorrow and they will remove his central line. this means NO IV! for the first time since he has been born - No IV! we are really excited about this.

I can not say it enough - He is so cute. and really looks good to me.

we will update tomorrow - pics and all!

thank you for your prayers - they are needed. I am having a hard time with that word. a hard time with needing. I am learning that we were created to need and that the LIE from the enemy is that I should not need. I should and I do.

I am praying for Coy tonight. Coy is a 23 weeker like kyle. However he is younger - he is 27 days old or so today... and he needs God to touch his body right now and cause him to tee tee fluid off of his body. He is swollen and the docs are having a hard time getting him to tee tee.

Lord would you touch Coy's body. would you heal him. You can - You are. would you not delay, we will not stop begging God. We will not stop asking, we may get tired but we will not stop. We believe you are who you say you are. You are the Healer. Please heal Coy - heal Kyle. Let these little guys very breath one day be a testimony of your greatness b/c you have healed them, your power b/c they are strong and healthy, your majesty b/c it is unexplainable, your mercy b/c we are mom's that want to hold our babies, your goodness just b/c you are good. no matter what you are good. God please help coy tonight to tee tee off this fluid - strengthen him. God please keep kyle's lungs breathing in and out - please strengthen him.

I know these are my requests. I know these are ann marie's requests - but God i know you gave us this love...so I ask.

amen.

Evening of Dec 29th - Kelly

We just got home from the hospital. Today was an emotional day. The fear of infection, specifically NEC, was really scary. I can't imaging what the reality of it does to the families that it touches. They restarted Kyle's feeding today - this is a HUGE praise and answered prayer - answered the way we wanted. he is at 9 ccs. full feeding for Kyle is 25 cc now so we will have to work back up. He did have some residual tonight which we do not want to see but Misty (she is AWESOME!) just moved his position and he ate it right up! So we (doctors and us) are feeling better about where Kyle is. I second John when he asks you to pray for these doctors and nurses. Not just that they would be used in Kyle's life for health and healing but that they would be blessed. Filled with hope and joy and love as they work and also in their personal lives and families. These are such uniquely gifted people. I am humbled every time I think about them caring for kyle.

I'm sitting alone in my living room right now. It is totally quiet. I mean totally silent. and the alone part just keeps haunting me. No matter what I do each day - where I go - who I am with. It feels alone. I pick up the house (i know for those of you that have come over you don't believe that but I do...), get ready, pump (still don't like it), play with the boys, ride in a car to and from the hospital, maybe stop and target with 100s of people, ride an elevator, sit in a pod with 4 nurses, 8 babies, and 100 alarms and bells. but I always feel alone. on the outside I am doing my thing - making the right face, saying the right thing (sometimes), laughing at the right times, going where I need to go - but on the inside it feels like I am holding my breath and looking everywhere to find some solution. some way to make this right. some way to get back my perfect little life. and then the fear takes over that it might never be perfect again. what if we don't make it through this? what about the way my kids miss me and my 5 year old that worries daily that he is not special, will my precious husband and I be weaker or stronger in our marriage, will his career make it through this. what about 220 - a life's work and dedication - will it continue? and what about my friendships - can they make it through this silence. and what about me.. the inside of me, what will it be like when all this is passed - what good will be left?

sometimes it's like carol said you find your self looking all around and then you have to remind yourself to breathe.

and then ... usually after a huge cry or moment of frustration I realize that it is not fair for me to even care about my feelings or anyone else's for that matter b/c at the center of all of this... this "journey" (that's such a nice christianeese word) there is a sweet precious baby who really just wants to be back in his mommy's tummy where nothing hurts him or is scary. where he can grow and rest. or maybe he wants to be like other 2 month olds; being held and cuddled and kissed and loved all through the day and not put back into a little fort when mommy and daddy have to go home.

i can't believe my son is going through this.

I am too scare to sound ungrateful or want this to be over b/c I DONT. I want kyle to get well. God please I know it is not about bargaining with you but I find myself asking you what you want me to do. i am trying to just "be" but I don't even know what that looks like right now.

I really do hate analogies. ask john sometime - he will laugh b/c he knows I don't like them - but I am trying so hard to describe this sick and chaotic panic I feel inside me all the time. not for your sake but for mine. It's like I fell into water and at first I thought that was no problem b/c I know how to swim. but all of the sudden I realize that I am swimming but swimming doesn't work. so now what do i do?

jadon just ran in here - it's 2 am and he was crying b/c a man from "meet the robinsons" keeps coming into his dream. and that keeps making his dream scary. He asked me to pray against a spirit of fear and for peace in his mind.

me too buddy.

Here are the photos I promised! This is how Kyle was dressed up when we got there Christmas Eve! Too cute!
Brandi his primary bought this for him! I think it is a build a bear outfit! Too funny!

Also, notice the pic of Kyle's bed! See the hat? Go stros! What a fan! He is only 2 pounds and already has an astros hat!

Update - Dec 29th -- JOHN

Keep praying! We just got off the phone with one of Kyle's awesome primary nurses, Keri. She gave a pretty good report. Between the four primaries that all saw Kyle yesterday Brandi, Misty, Amy and Keri... all seem to think Kyle is looking better and doing better! His stomach didn't look as bad to Amy last night, and Keri thought he looked better today than he did yesterday. They have decided to resume feeds (albeit not as much as he was getting) but... hey,... it is a start! Sometime around 11 AM, they will begin feeds again at 9 cc (down from 25 cc). This is a great sign to us. If they were genuinely concerned that Kyle could have NEC, they would not begin feeds again! We also heard that he may get his 2 month immunization shots today. Can you believe that he is old enough for immunization shots? Seems strange to me. He isn't even suppose to be out of the oven yet if you know what I mean. haha... crude,.. I know... (I am working on it.)............ sort of,... ok, not really.

His CRP number is down today. This is a great sign. CRP stands for C-Reactive Protein I believe. This was an indicator that something was going wrong with Kyle because it should be around 2, and his was elevated two days ago to 3.14. Then, yesterday, even though his CBC came back showing his immature white blood cell count to be lower (5 bands to 1)... His CRP was elevated again to 3.4....(which is a protein made in the liver) ... thus, cause for concern, cautiousness and antibiotics to fight both gram positive and gram negative infections. Today, in rounds they will discuss what meds they may be able to take away because His CRP level is down. They finally may be able to take away the big antibiotic we have been on for 43 days! Soon, Kyle could be hardware free (no lines) other than his CPAP, and even still, they are already speaking the words nasal canula! (spelling???!)
THIS COULD BE TOTALLY HUGE!
thanks for praying,.. please keep praying... pray that Kyle would not get sick from the immunizations. Pray that Kyle's Oxygen needs will still stay very low. Pray for no more Apnea's or Brady's. Pray for protection over Kyle's digestive system (protection from NEC) Pray for his ability to keep getting big, strong, and for him to be able to move away from CPAP very very soon onto nasal canula, because then, we can start the process of bottle feeds!

Pray also for our little buddy Coy and his family. We are praying God's protection all over him, and for good health.
Surely goodness and mercy shall follow him, all the days of his life.

Pray for the family of Jonathan. Jonathan lost his battle at the NICU the night before last. Pray for his family as they grieve
during this time. Peace, strength,... hope.

Pray for all the amazing doctors, nurses, nurse practitioners, RT's, and teams that are working hard, daily, through the nights to be the hands of Christ to these little ones. I pray special blessings on their lives and families.

Dec 27th update - Kelly

I woke up this morning expecting today to be like the last. then I got a call from Kyle's NP. They think may have an infection. Last night before we left the hospital I noticed you could see that Kyle was a bit loopy. You could see his intestines bulging a bit under his skin. The nurse said they would watch it, b/c his tummy was still soft, hardly any residual, and he had good bowel sounds. later that night he was requiring MUCH more oxygen and then by the a.m. they had ordered a KUB and Kyle indeed had distended bowels. So they stopped his feed and looked for an infection. They found some new white blood cells and another test that insinuated that his liver was making blood cells (to fight an infection). Hey have sent off a culture to see if it grows. in the meantime they have started another antibiotic to cover the bases that were not being covered by the 42 day round of antibiotics. OH... and today was day 41 of that 42 day round. Kyle was almost antibiotic free and IV free. but we will have to keep those around a while longer now.

Please keep praying for Kyle. His whole pod is having a hard time right now. Lots of sickness, lots of surgery, lots of people (surgeons, doctors, NPs, nurses, respiratory) there all the time, lots of lights, lots of big words, scary talk and phone calls. Please pray for these AMAZING nurses that come in to work each day not knowing if they will sit with death or stand with life. and no matter what (at least our crew of nurses) they wear compassion freely. They, each one of them, astound me.

We are all concerned about NEC - but right now Kyle only has one of the five or so symptoms that they mentioned with regard to NEC. Yes they think he may have an infection and yes it looks to be affecting or have started in his gut but they are reserving judgement for now on that.

we will know more in the morning. Kyle is back down on his oxygen requirements and has not had anymore of the de-sat episodes that he did last night. at one point today he was even at 21% oxygen (that is what we breathe!) when we left he was at 28% oxygen. the EEG is being postponed for now.

There is a little boy in Kyle's pod that is VERY sick tonight. I keep wanting to pray for a miracle and ask you to pray for that too. but I just don't know how to take all this to God. sometime I wonder what good our big fat to do list for God does. I mean he DOES have an agenda. But I believe He inclines His ear to us and scripture says that our prayers affect the heavens. but I also think that the cliche "but whatever your will is God" is usually a cop out for those that don't believe. some say to me that God doesn't purpose for kyle to be sick and hurt this is a product of our sinful world. some say that God planned this for kyle's life. Each day purposed and ordained. could both be true?

I thought 220 made me evaluate why I believed what I did and go find some pillars for my beliefs to rest on. 220 doesn't hold a candle to this. (However... I would recommend attending a 220 conference over life in the NICU!) but really I don't think there is anything wrong with questioning and searching and then hopefully building and growing.

My dear friend just lost a loved one that she says was not a christ follower. He admitted that he did not believe Jesus was the son of God. He believed in all gods. However this man was full of love and mercy. He was compassionate and giving. He fed the poor. He may have looked more like a christ follower than some of those who claim to be - the man who at age 7 walked down his church isle b/c he didn't want to go to hell and he knew he did bad things that made God sad. There has to be more to it than this. How does she now reconcile eternal separation from God for him?

I believe in God, the son of God, the cross, a resurrection and that Jesus rose from the grave as the beginning of restoration of all things back to him. but I do not understand this. I don't understand my friends loss. I don't understand why my friends don't have their precious precious little boy anymore, i don't understand why we give our career, life, children, home, church, money to God and then kyle has to endure this. I don't understand why Jadon has to miss his mommy so much.

I DON'T UNDERSTAND. and so I live by faith in the son of god who loves me and gave himself for me.

Galations 2:20 +

Please keep praying for kyle. We will update you tomorrow.

Urgent Prayer - John

Please pray for Kyle. We are headed to the hospital (at 10:50 a.m.) now and will update soon. He is having some digestion concerns. Pray for protection from NEC. They are also concerned about more seizures. Doing an EEG. We will update soon.

First Kiss

I feel like I have neglected my online journal. but at least what I hear from others is that they have too. Christmas has been good - with the funniest 5 year old in the world, the sweetest (almost 2 year old) in the world, and a miracle for a 2 month old - how can it be anything less than perfect. but I will say it has been hard. really hard. It is so strange to feel thankful and unsatisfied. grateful and anxious. excited and scared. happy and so sad - all at the very same time.

thankfully I am married to john - b/c I don't know anyone else that would put up with my whining and complaining and still truly love me. he is patient, truly patient. He helps me remember that christmas is about much more than my schedule!

anyway - on the the first kiss. I got to kiss kyle for the first time today. on his hand. my lips to his little skin. after 2 months of wanting nothing more - I don't have words to describe this one. I held him today and he did great - He cried just a bit, it sounds adorable. he also made those baby noises as he snuggled around and got comfortable!

We had a great time today. A friend of ours is having a rough time - he is getting back positive cultures and this means infection. Please pray. I have lots of questions lately about prayer - not that I don't believe. I do believe. I know God is right. but I just don't get what right is. I think on this every day.

Kyle is still doing good - eye doctor came today and Kyle got ANOTHER good report. Dr. Hitner is a world famous pediatric optometrist. She says it is unusual for a baby kyle's gestation with an insult (like the brain bleed) to make it through with out ROP. but so far so good! She will check him again next week.

Kyle's belly looked a bit loopy tonight - they are watching it. this worries me but I will take this to the Lord and ask him for protection for kyle.

please keep praying asking for a healthy digestive system, perfect eye sight, and for kyle's brain to be restored to perfection.

better days are ahead - i am trying to believe that I am praying and asking for that.

Christmas day - John

What a big day.
Jadon is finally asleep. This is the kid that is usually OUT by like 8 pm,... no later.
It is now 12:46 am. WOW.
Jack has been out since like 8:30.
Santa Claus visited the boys on friday. He stopped by to check out some
things on Jadon's list. He brought the boys over some matching reindeers,... and
even a small small one for Kyle too! What a good Santa! Thanks to Mr. Lawson
for helping us contact him! He brought just what the boys wanted today.
They have had such a big day with play and cousins and family and fun.

We got to see Kyle for a little bit today. He is doing really well today.
They have weaned him to a rate of 6 on CPAP. This is really great!
He hasn't had any real episodes (bradys or desats) for some time,
unless you go into his little fort and mess with him to the point of frustration...
Then he desats a little. His digestion is still good. He loves his pacifier.
He goes crazy on that paci. That is too cute.

Tonight, he is sitting right at 96 on his saturation, which is great.
He is at 23% oxygen at a CPAP rate of 6. This is great!
We pray he continues his progress.

Tonight, I am feeling a little bittersweet.
Christmas always does it to me. This year, in particular has been a little more
than most. I think of family that has passed on...I think of blessings.
I watch my boys grow more each year. I think of friends. I hang with the
families on both sides and sit back to appreciate small things about them
(even in our dysfunction) all families has it to some degree.. haha...
thankful is my word today. I am thankful for Kyle... his progess,... his nurses,...
the hosptial.. Kelly's doctor (Ritter) and Cathy (the NNP at the woodlands.)
All the nurse practitioners.. I can't talk enough about these people.
I am thankful and hopeful.

I am also grieving tonight thinking about friends who have lost
little ones during our time at the NICU. I have prayed for them
on and off all day. Please, take time this season to pray for these families...
Myran and Christina, Phil and Jeanna,... also, pray for Coy and Chris and Ann Marie.
Coy is working hard.

Jack today was all about saying Ho Ho Ho yada yada mas...
can't really type what exactly or how exactly he would say it in his best
nearly 2 year old voice,...
BUT, that is what I want to leave you with. Merry Christmas.
That this would be a season of Christ... that your soul feels it's worth today
knowing that God came in flesh to initiate real relationship with us... to be our
salvation... to be our friend. That is something to be joyful about.
Beyond the blessings of His hand... the blessing of His heart for you and for me
as we share in His purpose -- to give Him glory.
I thank God that even though it hurts sometimes, Kyle gives God glory with every breath.
Steven Curtis Has a new song... I love the chorus. The verses aren't very applicable, but the
chorus hits home...

it says... " and you-- You are changing the world, one little heartbeat at a time...making
history with every touch and every smile...oh you, you may not see it now but I believe that
time will tell that you-- you are changing the world,... one little heartbeat at a time."

I believe that God has used and is using Matthew and Marshall and Coy and Kyle and so
many other little ones in this way. He is using them to change our worlds,... our families,
our perspectives... our views... our faith...

one little heartbeat at a time.

Merry Christmas. Gloria. Emmanuel.
Blessings to you and yours.

John and Kelly

Christmas Eve... into Christmas Morning -- JOHN

Merry Christmas! It has been a while since we have written. We are enjoying our time with Kyle and we are trying hard not to be stressed out “making it happen” over the holidays. From trying to take time to soak in some quality time with the boys (making Christmas fun for them) to bouncing from one family event to another family event to trying to take a few minutes here and there for seeing friends, … time is really hard to come by… so, unfortunately , journaling has been the thing to suffer! I know many of you check on this daily, sometimes multiple times daily, and I am sorry we have not updated lately. I promise we will try to get back to it after all these holidays are over, and we are over all our illnesses… that’s right,… illnesses. Kelly got it, John got it, Jadon got it, and Jack got it too! All of us, sniffles, etc,… so needless to say, it has been fun around our house. We each had to take a few days away from the NICU,… which was really tough on Kelly. I have done it before. Hospital life is not easy. I have been to the doctor personally more in the last 2 months than I have in the last 2 years. Fun the things you can “pick up” in the hospital – even with a purell OCD like I have. Weird.

Anyway,…

Kyle.

Kyle is doing really well right now! His Oxygen requirements on CPAP have been very low, so they are talking weaning him tomorrow or the next day down a little!
This is a GREAT step in the right direction! His pressure is set right now to the highest place (8) BUT, they are going to go down to probably 7 soon! I think they go down to 5 if I heard correct, then they go to nasal canula! Kyle is getting to be a big boy!
He is 2 pounds 12 ounces tonight! When we walked into his room today, his primary,
Brandy, had him dressed up as one of Santa’s Reindeer! Too Funny! I will try to post a picture tomorrow. It was actually a build a bear outfit I think she said. Needless to say, Jadon got a good laugh, as did we. Tonight, one of Kyle’s favorite new nurses has him, Amanda. We are hoping Amanda gets to go to days to help take over some primary duties once Brandy leaves in January. Why? You may ask is she leaving??? She is now a full fledge Neonatal Nurse Practitioner, seeking employment at either TCH or CMHH, so she could be back as a NNP, or she could end up at TCH. Also, she is adopting and welcoming Nicholas into their home, so she and Steven will be a little busy for a while adjusting to parenthood! Congrats to her! BUT, sadly, we lose a great primary, so Valerie, Mandy, and hopefully Amanda will have to take over more often! There are some truly super people up there, so we are in good hands. We are having a hard holiday this year, but still good. Good because God is doing such great things in Kyle’s life. Good because I am so thankful for the family and friends in our lives. Good because I am overwhelmed with gratitude for the people that God has put in our paths at Children’s Memorial Hermann—from Craig Cordola to the amazing doctors, nurses, Nurse Practitioners, Respiratory Therapists, Child life specialists, etc etc etc…
We are so thankful for these doctors and nurses and NNPs! From the smiling receptionists to the care given from all in the NICU, these people are truly the hands of Christ ministering healing to Kyle and us. We are so thankful to a host of friends that give so much to us over and over to ensure a little sanity here and there, and to help take care of our homefront,… we are so thankful for the prayers, emails, cards, gift cards, comments left on the blogs,… all are so encouraging to us to read. We are so thankful to our ministry team, board of directors, Crossroads Baptist Church and Woodsedge Community Church, as they have ministered to us physically, spiritually, financially and emotionally. We are thankful for our homechurch and 220.

I will probably be writing more soon about the coming year,.. hopes, dreams, expectations,… but know this… God is doing something we can’t even begin to fathom
in and through Kyle. I truly hope that God is receiving so much attention because of Kyle up at that NICU. I hope and pray that people, doctors, nurses, etc are moved to see God’s hand in Kyle’s life, and know that God is using THEM to help redeem, restore and fulfill HIS Purposes and plans. What a cool thing to see.
Kyle is doing so good right now. Pray he can come off CPAP and to nasal canula soon!
Pray for continued strength, Pray for Apnea of Prematurity to go away! No more Bradycardias or Apnea episodes… this is where Kyle forgets to breathe and his heart rate plummets… SCARY… nurses have to go over and thump his foot to “wake him up”… pretty common in preemies,… but still SCARY! Yikes.
Pray he can begin to try and bottle feed very soon! We are asking for continued protection against NEC and that his little digestive system will keep working well!
So far, so good, as he is digesting very well~ We are praying daily that Kyle will not be plagued with any oral adversions and that he would take a bottle well, and learn to be able to eat and breathe at the same time. This is tough for these little preemies!

What a year,… what a holiday season. I am thankful that Jesus came. God with us. Emmanuel… we have hope. Christ in us—the hope of glory.

One thought to leave you with… from a Christmas tune… one of my favorites, if not my all time favorite …

Here is the line…

“when HE appeared, and the soul felt it’s worth.”

Wow. Thank You Jesus for life, for breath, for purpose and meaning.
Thank you for doctors and nurses and Friends.
Thank you for family.
Thank you for Kelly, Jadon, Jack and Kyle.

Thank you for salvation—eternal, and daily in our need.
Thank you that because of you, our soul can feel it’s worth.

Amen

FINALLY - an update!

I have been sick! I guess it was bound to happen but thankfully just a small cold. It was VERY hard to be away from my little lion. I missed him. John was awesome though - he took over mom duty as well as dad duty! John got to hold Kyle on CPAP which means we can hear him! It is amazing. I'll let john fill you in on the details of that!

anyway - I have not been good about updating b/c I have been trying to rest. I did go to see Kyle today b/c I am better but did not go in his fort - not holding him yet - I can't wait.

Kyle is doing good - He is having some As & Bs as they call them - which is where he forgets to breath and then his heart rate goes down. but the nurses say he is not having "too many". today when I went in he was on 24% oxygen and resting well on his tummy! He was really looking great! Kyle is eating even more now - they went up on his feeding amount again and he is digesting all of it.

I think my favorite thing right now is "THE PACI". If you wait until just before it is time for kyle to eat or right when they start to feed him and then give him a paci, he will pull both hands up to it and try with all his might to hang on to it and he goes to town. He sucks on that pacifier like a champ! Not only is this ADORABLE but really great news to us. Even though Kyle had been intubated for 8 weeks he likes the paci in his mouth. Sometimes preemies that have been intubated have severe oral aversions. We feel like he is doing good in this area.

Also, we have 7 days left of the 42 day round of antibiotics. We had an echo of Kyle's heart the other day and the clot has not changed. We will have another one in 7 days - when the antibiotics are done. Please keep praying for protection from fungal infections.

Kyle is really looking good right now! Thank you all for your support - this is a pretty tough holiday for us. Jadon and Jack are doing great though right now - really happy to be around family . and We even had a visit from Santa today - i'll post some pics soon. and don't worry I will make john share about his time holding kyle.

December 18th - Kelly

Quick update for tonight - Kyle is doing good on CPAP. His oxygen requirements are within an acceptable range! He has had a couple of de-saturations and a couple of the brady episodes. Please keep asking the Lord for healing for his lungs and to just plain get bigger. This what he needs right now.

He lost weight tonight, they were warning us that this could happen as he began to use more calories to work at breathing. He is also on the chronic diuretics and this can make him lose weight. Amy (his nurse tonight - she is GREAT!!) says he looks good right now - not having to work too hard and is resting on his tummy.

The little girl I asked you to pray for last night passed away today. Please pray for her parents.

off to try and sleep now.

The Nanny Chronicle

It's weird where I find my emotions tonight. Yesterday I cried for most of the day, overwhelmed by my God, and His mercy and His goodness and His faithfulness. I had moments where I was nervous, knowing that Kyle was being extubated, prayerful as I thought about his sweet mama who was probably watching over his bedside, hopeful and still begging God for Kyle's healing. And then I was overwhelmed by how much joy I felt that Kyle was on CPAP. And for every emotion I have, I think what it must feel like to be his mommy or his daddy or any of his grandparents or aunts or uncles.

Today and tonight are the last times that Traci and I will be with Jack and Jadon until the first of the year. Traci and I both are really sad about that, and Kelly and I have laughed that I am going to show up on Dedy's door begging to play with Jadon and Jack! The boys are going to be with family, first celebrating Christmas with Pops and Dedy and then celebrating Christmas with John's family. And while Traci and I will LOVE getting to be with our families, we can't help but feel a little bit at a loss.

So, for about 2 weeks, this will be the last Nanny post. I want to leave you with a Jack and Jadon moment and then with a request for prayer. Jack loves Christmas songs. He laughs when you sing them and it is a delight! Tonight when I tucked him into bed, I prayed over him and said "Amen." He replied with "Ho, Ho, Ho. Memy Mismas." What a sweet goodbye. Then when Jadon got ready to get into bed we had our usual, deeply theological discussion. He summed it up by saying, "Well, I know God never changes. Oh, and, he has a beard."

Please continue to pray for Jadon and Jack. Ask God to protect their little hearts and minds. Give them good rest and help them enjoy this incredible time with John and Kelly.

CPAP here we are! - Kelly

Thought you might want some proof - Well, it is still technically today (11:54 pm) and I wanted to post an update for Kyle today. BIG NEWS! Kyle was extubated this afternoon. It went well - he got moved to the CPAP machine with no major problems! His nurse today was great and he had a respiratory therapist there that got his tube out and CPAP on. This means that Kyle is doing all the breathing on his own. The CPAP keeps a constant pressure so that his air sacks in his lungs stay open - this is how/where he exchanges gases (carbon dioxide and oxygen). It also gives him some extra oxygen. So all the work is his and he has to be able to coordinate moving and breathing, sucking and breathing, sleeping and breathing.. and he has to remember to breath. So some details on today....

We got to see Kyle with nothing on his face! We got HEAR his first set of hiccups. and then just before we left for the day - we heard him cry for the first time! I have no words for the joy that comes after that kind of anticipation. Kyle did good on his eating today - even with being on CPAP. He also, when it is time to eat, starts to suck on his hands or if his lips rub up against his blanket we will try to nurse the blanket. Today he was trying to suck his fingers so Amanda (his night nurse tonight - she is amazing!) cut a pacifier down to fit around his CPAP and I did not have that in there for 1 second before he grabbed on with both hands and was just going to town on this pacifier! This seems great to John and me b/c most micro preemies will struggle with oral aversions - well you might not think this is a big deal but to a micro preemie it is a huge deal - they really need to be able to derive nutrition from the food they eat - so if b/c of the vent tube being in so long they have an aversion to anything in their mouth - that can be dangerous. But Kyle loves his paci! and so of course like a good mom I have decided to help Kyle form bad habits that will make his nurses crazy. I like to stand there and hold Kyle's paci in while he eats. associating a full tummy with sucking - that can help the oral aversions thing too!

Kyle had a rough blood gas after the move to CPAP - but they made a few adjustments to how he was laying and did it again in 3 hours and it was better! Please keep praying for him - I hesitate sometime to share all my thoughts if they are negative but I am trying not to filter too much for the sake of others.

today Kyle had a brady episode - don't ask me to tell you the real name b/c I couldn't . But I know it means you heart slows way down b/c you have forgotten to breath. at least that is what it means in our NICU world. so kyle had one of these today and I was sitting right there. I feel like in that room they are all used to that happening somewhat and our nurse was great - I was looking around in a bit of a panic and she was already at Kyle's side trying to make him mad so he would wake up and remember to breathe. This may not seem like a big deal now that you have been praying for Kyle for 8 weeks or b/c we are getting used to this minute by minute fear of death and hope for life - but today it felt like big deal and it is. imagine if you are sitting there praying over your child as he sleeps and all of the sudden he stops breathing, his heart rate drops from 160 down to 39. Then his skin turns a greyish color and the nurse rushes over to help. It felt like it took minutes for her to get him to come back up (get his heart rate and breathing regulated.) but I'm sure it wasn't. Kyle did not have any more of these episodes while I was there tonight. He seemed to be working hard at breathing but looked at rest when I left him.

Please ask the Lord to grow Kyle's lungs at a supernatural rate. Please ask God to continue protecting Kyle's breathing and heart rate on the CPAP - that Kyles sacks in his lungs will stay supported until he has enough "umph!" to do it himself! and please continue asking for protection over kyle from a fungal infection (he has 11 days left of the antibiotics for the clot in his right atrium.)

Please pray for a little girl in our pod that is very, very sick tonight. Please pray for her mom and dad - they had a horrific day today. Ask God to show them hope in Him.

Today was hard. Tomorrow is new.

Dec 17th - BIG DAY!

Today was another good day for Kyle. They have weaned him down to 20 breaths per minute and his oxygen requirements are down right now too. What this means is that they want to extubate him! THIS IS GREAT! But please pray - this is much more work on Kyle's part than what he is having to do now... it makes me nervous to even type this! but the doctors and nurses say now is the time to try! So what this means is that tomorrow morning when we go to the hospital, they are going to take out his ventilator tube, and try him on what is called C-pap. This is a HUGE step towards getting Kyle to a place of total feed and grow, which would move us to level 2 in the NICU,... one step closer to coming home.
There are still things we want to avoid! We had a small scare tonight, when Misty (his primary night nurse and all around cool chic with a hankering for expensive hand bags) got a little concerned with the bloating of his stomach. After 3 silent panic attacks from us, prayer, some food residual, a stomach x-ray, a visit from the favorite Dr. Lopez, and a visit from the nighttime fellow, all was determined to be fine.
Misty was able to get some air off his stomach, and well, Kyle decided to have 3 big messy diapers, so all was back to normal.
he got to eat again, and ate all 21 cc's! He was hungry after all that, I guess.
So, we pray for continued protection against NEC. This is such a terrible disease. We pray God's protection over Kyle's digestive system. We also pray for continued resolve of Kyle's brain bleeds, with protection as it recedes. Kyle has been on antibiotics for a long time. We have about 3 weeks left on this round. This is good and bad. Good because it provides layers of protection. Bad, because it even strips out the good bacteria which can open Kyle up to fungal infections, which can be serious.
Pray protection from any fungal infection. He has already struggled with a small yeast infection and an eye issue (watery and runny) This is nothing real serious, but causes us to raise an eyebrow as parents.

SO... pray for tomorrow (or today if you are reading this on monday)... The tube comes out! Pray Kyle tolerates this well and can move forward! Pray for protection over Kyle's brain and stomach! Pray for good health, that Kyle would stay free from any infections. Keep thanking God for the great doctors and nurses we have! Pray for Brandi and Steven as they prepare for the adoption of their baby! (Brandi is our primary nurse!) Pray for Coy, our little buddy in Giraffe pod B! Pray for our dear friend Caroline and her family as they have lost grandpa tonight to cancer. We have been praying for him for so long. Please pray comfort and peace to Caroline, James and the whole family, especially grandma.

Thanks for praying and interceding on Kyle's behalf! We will update early tomorrow and let you know how he is doing!

December 15th - Kelly

When I look at the pics below of Kyle I wonder how I could ever experience some of the emotions that I do. How could I be sad or angry or even frustrated. How could I do anything but burst with Joy? He is beautiful and I do have moments of bursting... lately the other emotions seem to come out more often.
I know all the church clichés ... (been in church since I was born)... in fact I have said most of the clichés to others. For example, "I need to just give it to the Lord." "God would not give me what I could not handle." Don't get me wrong - I believe there is a difference between saying something and living something. There is a difference between our perception of being a follower of Christ and what Christ intended a Christ follower to be. It is the difference between a statement made off the top of your head and a statement made from the bottom of your soul. It is the difference between what we think brings glory to God and what BRINGS glory to God. This is where I feel stuck.

One of the things I have learned since my time in the NICU is how important our gut is. You know - stomach, intestine and so on. I always thought if your heart and brain are okay then you are okay. Not so - with out a gut ... you can’t live. When something is not right in the gut... it is a BIG DEAL.

This is my struggle. My head believes Him. I really do KNOW that God is right. He is in control. My heart believes Him. I truly love and desire God with my whole heart. My problem right now is my gut. I am unsettled in the things I believe in my gut.

I am not questioning the reality of God. Really, I am not. I am not questioning why does God let things like this happen. I am not even questioning what God is doing in my life. I am questioning the response to God that comes from Christianity as I have known it.

When Kyle was born...I just KNEW b/c of my request, God was going to skate him through this and let him be a little miracle and astound the masses. These types of things just don't happen to me. God uses our family through john's career, through 220, through an amazing community - our home group, and yes even through miracles - just not this painful. But this - to fear losing my baby - and now today; 8 weeks in, … to still have to fear losing our baby. This cannot be what God intended for me.

so back to the thought "a difference between what I think brings glory to God and what BRINGS glory to God. I would have thought that if God had answered my prayer and Kyle did not have to be delivered that Monday morning – then glory to God. I would have thought that when I begged God to do a miracle and save Kyle from the brain bleed or miraculously make the bleed disappear – then glory to God. I would have thought that if God had closed his PDA right away or stopped Kyle’s seizures or protected him from the heart clot and infection that he has - THEN glory to God.

I thought that when our friend Phil gave God glory for everything his son Marshall was going through, when he and Jeana constantly spoke Praise to God for what He was doing in and through Marshall – and Marshall was healed and a constant, forever living testimony of God’s hand at work – then glory to God.

I SURELY thought that when I, with all hesitation shoved aside - and all the faith I could muster, asked God to change his mind – change the course for little baby smith (I won’t share his real name). Give him back to his parents along with the hope of Jesus Christ. SURELY then, glory to God.

God did not do what I wanted in these cases – so if I know in my head and in my heart God is real, God is right and true then I am left to question do I know what “glory is to God”. I would have thought that his children – hands raised in praise at His miraculous works would be it. I think we all think this is it.

But if the mountains just sit and the trees just grow and all nature glorifies God – If a child who can not really even recognize the work of God and credit it back to him – if they glorify God – then why do I think any different for me.

I was assuming that the only time God receives glory is when he does what I say – you might laugh when you read that but … for me this brings all new meaning to being “sadly mistaken.”

I guess I am saying this – I need to stop and think about what God considers to bring Him glory. I am afraid I am going to be shocked. I might not even like it. But anything I learn will be better than the blind and sadly mistaken idea that God is only glorified by looking down on his people as they bow on their knees thanking Him for doing what was in their plan. How did we become such an arrogant people? (Sorry. I didn’t mean to lump you into my writing here for those of you that are reading.)

Or to say it a different way (or as john might say it)… I don’t think my American Christianity has a any clue what God wants… what He desires for His Glory. Even growing up here in “ christiandom” and speaking “christianese” for all these years… I still don’t have a clue. And now I am changing. It is not that my belief in who God is is changing, or my belief in who he has created me/us to be.. but I will try to no longer “praise” God and say “Glory to God” out of ignorance and blindness. I will seek and wrestle and search.

Now, when my friend says “We lost our son today… … … praise be to God”… I will search for what that means until I find it.

New Photos of Kyle!

The Tiny Details - The Nannies

There are so many cool ways that we have seen the hand of God in all of this. We wanted to share this story with you. Three years ago, John, Traci and I (Carol) all worked together. One day as we were praying together, John prayed that God would move or move us. Within just a couple of months, God had moved John into a new job, me to Georgia, and Traci to Ohio. Fast forward three years. By the hand of God, Traci and her family were moved back to The Woodlands. By the hand of God, I was moved back to The Woodlands. Three weeks later, Kyle Sherrill was born.

The miracle of this is totally God's timing. My children are grown, and my husband is still in Georgia, so other than my daytime job, I am totally available to help John and Kelly by loving their two boys at home in the evenings and on the weekend. Traci has a college-aged son and one in high school, as well as a wonderful husband, so while they are away during the day, Traci is available to help in the same way, plus she manages the meals! Traci and I both believe that God worked out the details of our lives to allow us to be here for such a time as this.

I tell you all of this because this morning as I was praying for Kyle and Kelly, I was overcome with how this MASSIVE God that I love and serve, works out the tiniest details of our lives. He knew all of this. None of it was a surprise to Him. And He knew what this family would need. And even though it took moving two entire families, He made that happen.

So today when you are praying, please pray for the tiny details. And even though I am telling you how to pray, I feel led by the Holy Spirit to do so. Pray for Kyle's feeding tube. Pray for his vent tube. Pray for the machines that help him get the right amount of oxygen. Pray against fungal infections. Pray for clear skin, free from rashes and infections. Pray for the health of his nurses. Pray for 7 hours a night of sleep for Kelly. Pray for a freezer for her to put her breastmilk in. Pray for pumping to be painfree and quick. Pray for an oz a day of growth. And finally, pray for Kyle to exhale the breath of God onto those who care for him each day, that they might sense His very presence.

I will lift up my eyes to the mountains; from where shall my help come? My help comes from the Lord, who made heaven and earth. He will not allow your foot to slip; He who keeps you will not slumber. Behold he who keeps Israel, will neither slumber nor sleep. The Lord is your keeper; the Lord is your shade on your right hand. The sun will not smite you by day, nor the moon by night. The Lord will protect you from all evil; He will keep your soul. The Lord will guard your going out and your coming in from this time forth and forever. Psalm 121

He cares about the smallest of things.

Been a while... - John

Ok… so I KNOW I haven’t written in a while,… AND a lot has happened since,… sorry.
I am learning that sometimes, it is great and therapeutic to write at the end of the night,… sometimes, the last thing you want to do is try to somehow relive the day or days on paper or online – again. The last few weeks have been good, but also hard.

The good news… (and good things)…
I am finally over the crud, viruses, etc that I had. YAY!
Jadon and Jack are getting pumped about Christmas, (we put the tree up finally,….)
Jadon got to see Kyle again… Jack talks about Kyle,… it will be interesting to add him
Into the mix. Jack won’t know what hit him. It will be so cute to watch.
As for Kyle… SCROLL DOWN 2 POSTS FOR NEW PICS!
Kyle is doing really well right now. They are slowly working on the process of weaning him from the vent! NOT that this will happen overnight. They have already weaned a little and backtracked a few times… remember, two steps forward, two steps backwards...
It is a process for sure. BUT, overall, he is doing really well. All of his friends (nurses)
(I call them his girlfriends!) They all come by and comment on how big he is getting, how well he is doing, how cute he is… and we agree. Valerie, His NNP is so great. She told us the other day Kyle wasn’t her number one anymore… which is a GOOD THING! This means, (not that she doesn’t like Kyle anymore) BUT, that Kyle is doing better than others, so she has to focus more attention on others! What great news! Though, we do still get her attention and great care! They have started Kyle on diuretic therapy. This is a good thing and bad thing… bad because Kyle’s lungs (RDS, BPD) retain fluid easily, which means that he has a hard time breathing through all of that, causing his carbon dioxide level to be very high, which also has adverse affects on his pH level and pO2 levels as well,… so, he needs this therapy to help keep his lungs in good shape.
BUT, this also could help him wean from the vent faster, so, blessing and curse.
He weighs 2 pounds 8 ounces right now! He may lose a little due to the diuretics, but,
He is getting big! 31 weeks corrected today!!! WOW! We are really amazed when we zoom out on this whole thing, but let me tell you, sometimes, in the moment… this really sucks. Sorry, I can’t church it up for you, but truth be told,… no words, no cliché, no Sunday school answer or statements help some of these situations we are looking at and walking through. The NICU is a place where you can see God in a powerful way and appreciate Him, giving so much glory to Him…and the NICU is also a place where you want to ask God in no uncertain terms with a few explicatives involved, “what gives?”

Two examples --- other than the moments of questions to God over Kyle…
One… Last week we got word that some new friends of ours that we met up at the NICU had lost their little guy. Marshall had made it through a lot in a few short weeks. He was born with heart issues, and had undergone 2 corrective surgeries before being sent home to come back in 6 months for another. He was doing well, then for no reason known, he passed away. I didn’t understand this. I hurt so much for our friends. Please pray for Phil and Jeana as they grieve this loss. Pray for the whole family.
Then… just days later…
I stood with a new friend of mine the other day in the hall talking. We were discussing his son’s prognosis at the moment. Things change moment by moment, sometimes for the better, sometimes for the worse. As we talked, it was getting clear that there were not many options left for his son. His little guy was admitted thanksgiving day. Thanksgiving day was their day one. I will NEVER forget that. I watched them as they admitted their baby, born at 23 weeks and 5 days. He was in a situation much like that of Kyle. He was positioned 2 beds away. Kelly and I quickly did our best to get to know this sweet family, only to find out that they had miscarried twice before this little guy was born. Long story short, we talked a lot on Sunday. We prayed together,… we were journeying together through this thing… Kelly and I walked in on Monday around 5 pm to learn that their little guy had passed away that morning. Words just can’t, --won’t, --shouldn’t suffice in moments like these. I pray the peace of God will fill this family like they have never known, seen, imagined or experienced. I pray the richest blessings of God on them, and that they would be able to have a understanding and love for God like no other --- inspite of these circumstances. I don’t know what else to say about this.
Would you please pray for Myran and Christina with us?

Pray also for Chris and Anne Marie, and their little guy Coy.
Coy is another 23 weeker in the pod next to us. He was doing great for a week, and today had a rough day,… but God is working. Pray for his family. You can read about him at prayforcoy.blogspot.com

Ok… back to the good list…
Other cool things that have happened… I go to hold Kyle for the first time the other day.
Misty, (our primary night nurse) wouldn’t have me going any longer without kangaroo caring… SO, I held him for like 3 hours! That was a cool thing,-- very cool thing.
On the family front, Jadon and Jack are anxiously awaiting Christmas. Kelly and I have
been doing our best to try and create some sort of “normal” holiday season for them. It is tough. We are usually having people over all the time, cooking up a storm for friends and neighbors, decorating to the nines,… we try and squeeze the life out of the holiday season, Jadon knows it is a little different I am sure. BUT, never the less, it is going to be a good time. Different … but good. I told Kelly last night that this year may be weird, but next year sure will be awesome with Kyle home.

Pray that Kyle continues to overcome. Pray God’s anointing on him. Pray that God protects Kyle’s digestion and that he continues on this path of feed and grow! Pray the vent comes off very quickly!

I will write more later! Be praying for us. We are in mode of trying to get the new CD finished and out. Following that, however, comes the travel and support of the CD, so pray that all these things can work out together time wise, financially, etc…
I will soon begin the process of updating web world for the ministry. You can read updates on what is happening with the CD and stuff soon at johnsherrill.wordpress.com.

Hope you are all well, and you are gearing up for a great holiday with your friends and family. And, forget what is politically correct – say Merry CHRISTmas to as many people as you can!

Blessings --- John

PHOTO FUNDRAISER!!

CHECK THIS OUT! ALL PROCEEDS WILL GO TO THE KYLE SHERRILL FUND!!

We are Kari and Jonathan Phillips and have felt compelled to help the Sherrill family. We are parents who almost lost one of our kids and had the complete awe of watching God literally work miracles in our Aidan. He is 6 and a daily reminder of God's absolute healing power and protection. We want John and Kelly to be able to see miracles in Kyle without having to worry about finances- or even better- to see God's hand at work in that as well!

God has blessed Jonathan with a keen eye for photography and photo editing, and as a result he has always strived to serve God through his photography. A few weeks back we were reading Kyle's blog and felt compelled to offer Jonathan’s photography services to bless the Sherrill family. We had read how Shauna had been working to raise funds to bless the family and asked for other artists to lend a hand. Immediately we knew that Jonathan could use the talents God gave him as a way to serve the Sherrill family. As a result, we are offering Jonathan’s photography services to "friends of the Sherrills", with 100% of the payment going to the Sherrills. We feel honored that God would use us as a way to serve the Sherrills.

Jonathan is a photographer who specializes in on-location photo shoots for families and individuals, as well as shooting special events. If you are going to be in need of a photographer, we would love it if you would consider using JonMatthew Photography to benefit the Sherrill family. Included is a link to Jonathan’s photo webpage.
JonMatthew Photography
832-381-0903
http://flickr.com/photos/paperbydesign/

Loving and Learning - The Nanny Chronicle

Today, both boys got to take a trip with Ms. Traci to the hospital. While Jack and Ms. Traci played on the playground, Jadon got to spend a little time with Kyle. He had such a good time! In general, both boys are doing well these days. They of course still have days when they just want their mom and dad, and they let that be known as only a 2 year old and a 5 year old can. But they are hanging in. Keep praying for them.

Jack's latest cute thing is that when you put him in his bed, he starts saying, "Jesus, Jesus, Jesus." What he wants is for you to pray with him. He is very into "praying" lately. Tonight while he was in the bathtub, I put my head into my hands, taking that moment to sneak a restbreak. Jack started saying, "Pray, pray?" When I looked up, he had his head in his hands and was "praying." So cute.

Tonight, as always, Jadon taught me a few things about God. He was asking me a million questions about God, like, "What kind of bed do you think God has?" I told him God didn't sleep and he said, "Maybe not, but he rests because it says that in the Bible." . . . good point. Then he asked me why he made us need sleep instead of just making us to need rest. I didn't know that one either. Then he asked me if God created the world. Aha! I knew that one! YES I said excitedly. Then he asked me if I knew who created God. Another one! Yes, I knew that one too! I replied, "No one made God, He has just always existed."

"Nope," Jadon said. The other God made Him. I told Jadon there was only one God and he said, "No Ms. Carol. There are three Gods in one." "Really? Who are the three Gods in one," I asked. He confidently replied, "God the Son, God the Glory and God in Heaven."

Have I mentioned how much I love these kids?

Monday Night - Kelly

Kyle's friend died a few hours after my last post. I wish I could understand enough to help others understand "what" or "why" or "how could this..." but I don't understand.

I only have questions. Questions that will probably never be answered. I would love to share ... and will ... just not tonight.

Please keep praying for Kyle.

Monday - Kelly

Please pray for Kyle this morning. We are asking God to supernaturally heal his little lungs - they weaned his vent this a.m. and his CO2 is up some. Not dangerous but his CO2 needs to be good for them to keep weaning and get him off the ventilator. This is important. Please never cease to Praise him also for what he is doing. I feel a bit like I am telling you how to pray - please always follow the Holy Spirit when you pray for Kyle. I am just sharing how I am praying.

to share a bit more... and I ask you to join me in this prayer for our friends at the NICU. Please keep praying for our friends that lost their baby. I don't have words to pray yet but God hears the groaning of our spirit. another friend is very sick - we have been asking you to pray for him.

big deep breath...

Father,
I beg you to intervene for our little friend. Will you CHANGE this course and heal his body. Will you give his parents their baby. let them have him. Please show them hope today. Please heal. supernaturally - the doctors don't know... Oh God give them eyes to see, impart to them your wisdom. Will you heal this little man.

please pray with us - I will update you.

Healing Power Revealed - Kelly

Kyle had an echo on Friday and we just found out that the PDA was NOT DETECTED! We are so excited to share - thank you all for praying specifically in this way and thank you all for fervently praying! Praise God for the work he has done in Kyle. This means Kyle will not have to endure a surgery that would put him at risk for infection and other complications.

The clot in Kyle's heart was said to be smaller. I am so thankful to God for healing our son. Please continue to pray with us...

Please pray protection over Kyle's digestive system - this is so important! Please ask God for perfect restoration of Kyle's brain and that the blood would not be blocking any flow of spinal fluid. Ask the Lord to HEAL Kyle from whatever is/was causing the siezures. I am asking the Lord to minister to Kyle's spirit and soul as he rests in his little fort.

Thank you to all of you who are praying and those of you that commented over the last few days.- I have been struggling with fear lately - lots going on - I sat down to read those tonight and it is so comforting to know so many of you emotionaly are going through this with us, physically are encouraging to us, and that spritually you are fighting for us.

I'll post some more tomorrow and I even have more pics soon - thanks for doing life with us!

Day of Life 45 - Kelly

WOW! 45 days! that should be followed with "All Glory to God"!

I was greeted today by Kyle's NP, Valerie! She is BRILLIANT and (in my opinion) partial to Kyle! She makes amazing decisions on his behalf and is really taking care of him! anyway today she told me that Kyle was not #1 anymore - meaning he is a lower priority b/c he is not the "sickest" baby in her care anymore! that is reason to PRAISE! We also have a new doctore this month, Dr. Morris, we are still getting to know her but her reputation preceedes her - SHE'S GOOD! She said today that her goals for kyle these next two weeks is to GROW, they are working on increasing his milk amounts and adding calories and vitamins to it. Funny how we are told that breast milk is the "perfect food" for babies and then as soon as he starts eating it they tell me we need to get him up to a certain amount so they can add some stuff to it! calm down all you people that just got upset - i'm still pumping - we'll talk about how I feel about it when Kyle is done with it. I know that breast milk really is best - I just have to vent every once in a while! not my favorite activity!

anyway - back to kyle! His goals are to grow and to wean him from the ventilator slowly. she even said we were wanting to have about 2 weeks of boring! Sounds good to us and good to Kyle!

I got to hold him again today - this is a new part of our everyday now. Kyle LOVES it. He does great when I am holding him.

update on the EEG - we know that the medicine they gave him for siezures is working. His EEG did not show siezures this time. It said a couple of other things that we will be able to understand and share as soon as they come interprete the report to us or to the docs.

and THANKYOU for praying for the blood test they did the other night - his nurse was able to get the amount of blood with no cloting (they did have to try twice :( but they got it. and the test showed that his clotting factor was appropriate. That means they are happy with the blood thinner medicine levels.

Ways to pray: tonight at 3 a.m. Kyle's nurse will wean him a bit from the vent then a blood test (called a blood gas) at 5 am to see how he is doing with that. Please pray for the Lord to strengthen and mature and grow his lungs. Please ask the Lord to protect his digestive system and continue to grow it. Please ask God to heal and restore Kyle's brain and mind to perfection. Please ask that God would supernatually disolve the clot and cleanse his body from infection... and close the PDA in Kyle's heart. pray for growth - for kyle to gain weight. all these physical needs and I ask also that God would be the air he breathes and that as Kyle grows he would know and remember the very scent of the one who has healed him.

Please pray for our 23 weeker friend. I told you in our last blog that he was doing better - and now he is having some big struggles - I ask Jehovah Rapha to touch his body tonight and heal him. I ask for hope to fill his parents.

Please also pray for some other friends we have made at HCH. They lost their precious son yesterday. I don't have words for this. Please beg God on their behalf.

Thankyou for praying with us.

ORDERS OUT!

Hello Folks!

I just wanted to say thank you for every tshirt and card order! THEY WENT OUT TODAY. If you ordered before today (and your payment was processed or received) then your order is in the mail!

MERRY CHRISTMAS!!

thanks for your patience and support!

EEG update - Kelly

Please keep praying for Kyle. We do not have his EEG results back yet. These have to be reported and interpreted before the information gets to us. So many amazing doctors, nurses, therapists and technicians all working to take care of Kyle! so when they have all done their part we will get some news.

In the mean time - Kyle weighs 2 pounds 3 ounces! His amount of breast milk is going up fast (that is a great thing). The are fortifying his milk now to help him gain more weight! We get to do kangaroo care often now and this is soooo good for him and for me too! John will be joining me at this soon!

Our little 23 weeker friend we asked you to pray for is doing better! Praise the Lord. And we met a new little friend last night - He is also a 23 weeker and small like Kyle was. Please be praying for him too - he is a fighter and a little miracle - funny that weighing in at 2 lb Kyle is the heavyweight of the bunch, and at 6 weeks old and almost 30 weeks gestation corrected age he would be the oldest man in is 23 weeker group!

I find myself each day battling to focus on the Lord and the TRUTH that he is in control and he is healing Kyle. Satan puts thoughts out there, sometimes even through others careless words, that cause me to fear or feel defeated. But our God is defending me, He is fighting FOR me. and because of that I am able to see very clearly that God is at work here in amazing ways. All of this healing that God is doing even goes way beyond me, beyond our family and close community, and even beyond Kyle.

Our God is so good and so big. thank you to all of you who remind me of that when it gets tough to. I have a friend that wrote a song - teach us to be community... it says. and I also think of our 220 dream "to the ends of the earth"... I never could have fathomed the Lords plan - I still cant. I just mean that I have always desired community and I have always wanted God to use our family/ministry to reach places at each end of the earth but wow... my "today" sure doesn't look like I thought it would look.

Please keep praying for protection over our little lion's digestive system. Pray that this 6 week round of antibiotics would clear the heart clot of infection. Ask God to take away the clot. Please pray protection over Kyle's brain and body from the blood thinners he is receiving for this clot. Please continue to ask the Lord to heal and restore Kyle's brain and ventrical space in his brain to perfection. Pray for growth and weigth gain and new lung tissue growth and that the Lord would touch and heal his lungs.

and I am not sure who is on the wall at 1 a.m. or who is awake but please join me in praying specifically - Kyle gets a blood draw at 1 am that is hard to get b/c it requires much blood and can clot fast. They will use it to test the level of blood thinner in his system to make sure it is not too much and not to little as they continue to treet him. Kyle has had a brain bleed so a blood thinner is scary to me. however the clot in his heart needs to be treated. Please pray that they will get the blood need from Kyle easily.

and please join us as we give God GLORY for all he is doing in Kyle's life. Thankyou to those of you that send word of what God is doing in you and in others around you through Kyle. That is encouraging.

Kelly

That's a Lot of Love - The Nanny Chronicle

If you have ever cared for a 5 year old, then you know that bedtime can either be challenging or charming, and sometimes both! Tonight, after Jack was sweetly asleep in his bed, Jadon and I played with his new nativity set. We had a great time talking about Mary and Joseph and the baby Jesus. And we made up songs and talked about the gifts that the wise men brought, like turkey and ham and smelly stuff. And then it was bedtime.

Jadon said, "Ms Carol, why do you call me "dolly" when you tuck me in?" And I said, "I call you that because it is a special name that means I love you." He said, "Do you love me more than anyone in the world?" And I said, "No, I love my sons more, because I am their mommy." So then we talked about how much I do love him, and it was followed with "this much?" and arms that kept getting wider and wider and wider. We laughed and laughed and then he said, "My mommy loves me more than anyone in the world." And I said with feigned shock . . . "She does?!" And he said, "Yes. And I know how much she loves me." I expected him to open his arms really wide and say "this much," but instead he said, " She loves me fifty hundred and forty eleven. And that's more than anything."

Fifty Hundred and Forty Eleven. That's a Lot of Love.

New Pictures of Kyle!

We told you Shauna was back, which means, good pics... (John tried)...
Here are some new pictures of Kyle, and Kelly getting to Kangaroo Care!
He is getting bigger!!

End of the Weekend - Kelly

Thank you all for praying so much this weekend. Please keep praying as we head into tomorrow. Kyle will have another EEG tomorrow. They will be looking to see if this medicine is helping with the siezures. We are asking God to completely heal Kyle's brain and restore it to perfection. Please pray with us.

Tomorrow starts a new big week for us - a new doctor, a new neurologist. Please pray for all of Kyle's doctors, NPs and nurses - that God would give them wisdom as they work to help Kyle & ask the Lord to bless them and to move in their lives through Kyle the way He is in ours. They are amazing people, please pray blessings over them and their homes and families.

Again, I know we say this lots in our blogs but... truly... thank you for praying. I am so humbled that you would make our family and our youngest son a priority in your lives. I will spend forever being grateful for you and our true community.

- and i have new pics that will be up tomorrow!

From the Mountian Tops - Kelly

I said in an earlier entry that we have 2 choices - we can shout from the mountain top that the Lord is healing or we can ignore what God is doing b/c we don't understand it; explain it away b/c we don't believe it, or sometimes we ignore it b/c we move on to the next need or request of the Lord. So here it is...

PRAISE BE TO GOD! We had to move Kyle's head ultrasound up from Dec 9th b/c they were looking for a reason for the siezures. Praise God for Kyle's results that they saw on the ultrasound. It showed that the grade 3 bleed was resolving. Dr. Lopez said she did not see right now any blood clots that could block the flow of spinal fluid. the ventricles were dialated but not big as she expected they might be. No PVL's were detected. THIS IS ALL AMAZING! God has again answered a huge prayer. And I really want you all to join me in thanking God for this and spreading the word that the Lord is doing an amazing work in kyle. I so much want to invite the whole world to pause life and just peak in on what god is doing here. And then my prayer really is that they - you - me - would be changed forever b/c of what we see. John and I have been praying that this miracle work of TOTAL HEALING AND RESTORATION for Kyle will be used by God to explode the box that we have put him in in american christianity today. You know - the box - where we limit God or assume thta this is the same as we are ( in religion, denomination, politics, abilities, etc...). This is what needs exploding. God is big, huge, mysterious.

Father THANK YOU for causing the bleeding in Kyle's brian to resolve appropriately. Thank you for no PVLs and no clots that have formed and that the spinal fluid can flow normally. Thank you for restoring. Thank you for hearing our prayers and allowing us to be up close to your miracles. Thank you God! Jehovah Rapha would you do more...

The continued prayer request to this is more healing. Kyle is having siezures - the nuerologist is not sure of why, not sure of a prognosis in what is going on or what is to come. That is kind of the way with preemie's. They are giving Kyle medicine to try and stop them. We will know more as we get into next week and and meet his new team of Doctors (remember - the monthly shift change).

so PLEASE do not cease praying. Please again pray and ask the Lord, the one that made the stars to put into place, the one who created life, the God that has split the sky to give food, parted a sea for his people to be safe, made the lame walk, and brought the dead back to life, and also gave his only son out of love for us - to save us, please ask him, our saving God, our restorer to heal Kyle's brain of these siezures. Every time I have a chance to hold kyle I am able to put my hands on him and pray - I know so many of you are doing that from far away- PLEASE keep doing that. So many of the prayers you send to me I am praying over him!

I'll update again soon - sorry we missed a day - it's been tough - I am humbled and grateful for what God is doing. I am begging for more.