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