Kyle's NICU Story in Pictures

Wednesday, January 16, 2008

Here we go again... John

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

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

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

Thanks for praying.


L.D. said...

Hey Sherrill's - don't even doubt it, we're still loving on you and praying for you all. Luv

Anonymous said...

I will be praying that this is not a set back, but just a hesitation before a large leap forward. The Lord is working wonders with Kyle. Never doubt Him! I am sure that patience must be wearing thin and fatigue has long since set in. Hold your head up! You are a wonderful inspiration to so many and Kyle an angel. Hope to see that little one soon. I will be praying for him tonight!
Kim Stevenson

Anonymous said...

I am praying my rear off for ya'll. This is the hardest part of the NICU experience... when you see enough to wonder if the right decision is being made. Listen to your gut and don't be afraid to question - sometimes pushing people is what you have to do. Your parental intuition is more important than you think. Hugs and prayers... Kelly Espinoza - a 25 wker NICU grad's mom

BHG & Co. said...

still praying for you guys. Will be praying tonight that Kyle bounces back quickly.

-Bill Gernenz

Chris & AnnMarie said...

We are praying for the little man! As soon as he "kicks" whatever is holding him down, he'll be back to the cannula in no time! He is such a strong, strong baby, nothing will hold him down for too long! Kyle and you guys are amazing! See ya tomorrow!

Unknown said...

John and Kelly,
Keep your eyes on Jesus throughout the storm! I continue to pray God's healing on Kyle.

Much love and prayers,

Anonymous said...

Still believing and praying.


Anonymous said...

Just wanted to let you know that we lifted Kyle's name up in prayer last night at church. I will be praying today that whatever this setback is will pass quickly! Kyle's gonna' be just fine... in His time.

Still praying, still believing and still expecting continued healing and growth!! Thank you Lord!

Candy Humber

Anonymous said...

Hey Kelley and John, remember it is 2 steps forward 1 step back. Don't let these setbacks get you down. God is still in control and He will amaze the doctors. God is just making sure you are still depending on him! One bit of advice that a good cardiologist friend told us is look @ the child. That is the best indicator of how he is doing. The numbers (saturation, heart rates, eeg readings, etc) are all just indicators but nothing beats just really looking and observing the child. I remember several times and several doctors not believing the numbers saying he looked better than they indicated. They would hold off on different things because of what they observed. Don't be afraid to ask questions and make them explain it to you in a way you understand. Don't let them leave until you understand what is going on and the clinical reasons behind their actions. I learned way more about the heart and the circulation than I ever wanted to know but in the long run it has helped me and helped me help others. As John said second verse same story seems like it isn't coincidental and I would be sure to point that out. Probably telling you things you already know but just passing on my thoughts and advice. Hope they help! Kyle is a fighter and God will give him the strength. "I sought the Lord and He has heard me, and delivered me from all my fears" Psalms 34:4 “Now may our Lord Jesus Christ Himself, and our God and Father, who has loved us and given us everlasting consolation and good hope by grace, comfort your hearts and establish you in every good word and work” (2 Thes. 2:16-17).
Blessings - Julie Andrews

Anonymous said...

"Here we go again... John"

Please know that you are not alone. Lots of people are praying.

Anonymous said...

It's been quite the roller coaster ride, so many ups, downs and even upside downs. I know you are tired and worn out physically as well as spiritually, but know that you are being lifted up in prayer and held so tenderly in our thoughts.
Rest in Him and continue to know that God is at work. Part of my prayer for you is that God will be so evident in your life right now. That He is making it known that He is at work and He is authoring a story in Kyle that has no equal. That He will be honored and glorified in ways we can't even begin to comprehend and that the kingdom will grow and be encouraged through this story of sweet little Kyle and you, his parents, who have chosen to be so open and transparent as you experience this crazy emotional roller coaster ride.
Thank you for being willing to share and for allowing us to be a part of Kyle's story. We love you and continue to lift you up.

Much love, many prayers, and abundant blessings, Adriane Hunter

Tabaitha said...

Praying for you guys!

Patti said...

Just a little "milking" encouragement for Kelly. I am in fellowship with your suffering! HATE to pump, but love, love, love the sweet time getting to breastfeed my little man. Sometimes it's the only time he gets me to himself. Try to think about that when you're hooked up: that at some point in the not too distant future, Kyle WILL be snuggled in your arms, nursing with all his might. No more pump parts to wash!

Anonymous said...

Still praying - always praying....even w/ frustration!
Stefanie and Chris

Anonymous said...

John and Kelly,

I just wanted to say that I am hoping Kyle had a better day today. I have thought of you many times today and prayed several times.

Still praying, still believing and still expecting continued healing and growth.

Candy Humber

Anonymous said...

John and Kelly,
You probably dont remember but in my first post to you I said this journey would be a marathon and not a sprint. This is marathon part. I know how hard it is to think you know better than the docs what is best for Kyle and on some level you do but just trust that God is working through good doctors and nurses and he is using them to heal and restore Kyle's body. I know you want to scoop him up take him home and for all the bells whistles, meds and everything else to go away. But Kyle is where he needs to be and God is continuing everyday to heal him little by little. I do agree with one of the other post to trust your gut when it comes to Kyle but remember too that the NICU is 3 steps forward and 2 steps back. Unfortunatly we caught up in the day to day and sometimes dont see the big picture. I know this is hard but hold on, press in and just be for awhile. Enjoy this day and this time with Kyle, tomorrow will be different and so will Kyle he will be one day older and one day stronger and one day closer to being home. Not trying to sound too "churchy" but this is the day the Lord has made and so rejoice in it be glad in it and have a good laugh in it.
Love you guys so much and praying like crazy.

Anonymous said...

Thank you Lord for all you have done at this point in Kyle's life. Please continue to watch over him and keep him safe and healthy and allow his brain and his lungs to grow and become strong. I pray this in Jesus name and for His sake. Amen

Still praying, still believing and still expecting continued healing and growth.

Candy Humber

Matt & Alison Blokzyl said...

As a former NICU Mommy, I think of you all every day and check this blog often. I know how difficult it can be to stay patient, hopeful and calm within those hospital walls.

I leave you with the only prayer I know:
"God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference."

Anonymous said...

Octavius Winslow (1808-78)

Eternal love moved the heart of Jesus to relinquish heaven for earth—a diadem for a cross—the robe of divine majesty for the garment of our nature; by taking upon Himself the leprosy of our sin. Oh, the infinite love of Christ! What a boundless, fathomless ocean! Ask the ransomed of the Lord, whose chains He has dissolved, whose dungeon He has opened, whose liberty He has conferred, if there ever was love like His!
"Cast your burden upon the Lord, and he shall sustain you." Psalm 55:22
It is by an act of simple, prayerful faith we transfer our cares and anxieties, our sorrows and needs, to the Lord. Jesus invites you come and lean upon Him, and to lean with all your might upon that arm that balances the universe, and upon that bosom that bled for you upon the soldier's spear! But you doubtingly ask, "Is the Lord able to do this thing for me ?" And thus, while you are debating a matter about which there is not the shadow of a shade of doubt, the burden is crushing your gentle spirit to the dust. And all the while Jesus stands at your side and lovingly says, "Cast your burden upon Me and I will sustain you. I am God Almighty. I bore the load of your sin and condemnation up the steep of Calvary, and the same power of omnipotence, and the same strength of love that bore it all for you then, is prepared to bear your need and sorrow now. Roll it all upon Me! Child of My love! Lean hard! Let Me feel the pressure of your care. I know your burden, child! I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down! Do not fear to impose it on a shoulder which upholds the government of worlds! Yet closer come! You are not near enough! I would embrace your burden, so I might feel My child reposing on My breast. You love Me! I know it. Doubt not, then. But, loving me, lean hard!"

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!