Kyle's NICU Story in Pictures

Saturday, January 26, 2008

A term baby - kelly

this is the phrase our nurses are starting to use.  "you know... now that he is term... " is what they are saying sometimes.  meaning - he should be acting like a newborn and the good news is HE IS!

I notice this more and more everyday!  yesterday, kyle ate 26 ccs at his feeding and today he ate 25 ccs at his feeding.  and so he takes the rest (38ccs total) through his tube.  This is not even b/c he tires out but b/c he only gets 30 minutes to try. This is with good reason.  who would have though about all the work it takes to eat.  Kyle has had one brady at the beginning of each try.  this is just him trying to get organized with the suck, swallow and breathe.  He doesn't have them after that.  He does de- sat some but always self recovers when we take the bottle out of his mouth.  I am having to watch him and try and learn to tell when he is needing a break without the monitors - harder than it sounds!  they stop him after 30 minutes b/c he can get really tired out and then have more bradys while he sleeps.  he can stop gaining weight b/c he is using so much energy to eat.  all the things we don't think about.

Kyle is doing so good that his NP decided he could take a bottle 2 times a day!  He is doing so great.  and I must say I LOVE feeding him.  He is so cute he sucks and swallows perfectly and then he gets to where he is going to fast and forgets to breathe - but he does so good that he will stop sucking and take 10 really quick breaths.  almost as if to say "this is soooooo good!"  It really is adorable.

Kyle LOVES to be held, he LOVES his paci, he LOVES to be swaddled.  He looks adorable!  today he was wearing a hat from a little bug outfit that has antennas on it!  :)

He got another echo friday.  we should have the results on monday or tuesday.  this will tell us more about the clot in his heart.  if it is in fact a clot, scar tissue, getting bigger or smaller, where in the heart it is and if this is a problem.  now sometimes they do come back and just look at you and say "we don't know" alot but I am hoping for information.

Kyle has his eye exam last wednesday again - he has NO ROP and NO plus disease.  This is also very unusual! He is doing great and you can really tell that he can see so much better now.  Dr. Hitner (world renown in her field) moved him to every other week check ups!  this is great news!

let's see - what else amazing can I say....  

oh  - jack today (he has been saying sentences now)  looked at me while we were both having a yogurt snack and said "lu you .... ma-ma"  the sweetest thing I heard all day.  kyle's burp at the end of his feeding runs a close second!

as far as me - there is so much on my plate right now that I really need to be doing 800 things other than journaling my thoughts - but....

God is changing me - continuing to restore I suppose.  I have been really struggling spiritually with modernized christianity and our perception of God.  I have been at a loss in prayer, confused by our christian works, and evaluating my thoughts to what I take in and pour out in ministry.

I think all these thoughts are beneficial and even from the Lord in my life but in my circumstances they have been enveloped in negativity.  The NICU is a hard place to be positive. not hard to stay positive on the outside b/c we can smile and ask about the other babies and want to stay positive and upbeat what some of us call "believing".  but it was pointed out to me tonight that my lines have been blurred in the difference between faith, hope, and well wishing.  all of this vs the spiritual gift of healing.  God's mercy.  God' glory.

The same prayers can't just roll off my tongue anymore.  The weren't empty then and they are not empty now but God is stretching me, painfully stretching.  I'll share more on this later - when my 2 year old doesn't have a birthday party the next day I need to get ready for!

point of today is - I have to smile again,  I need to be up and happy, I need to recognized where I am is ordained not orphaned.  I have got to fight this negative.  not with will power and not with focus - that won't work.  the blood of jesus has made me new.  clinging to that will work.  what God is doing even thought it hurts so bad i can't see straight, even though it brings confusion and guilt b/c it shouldn't hurt, even though I am angry, feel betrayed, alone, worry about those women that are hurting so much more than me tonight, EVEN THOUGH ALL THIS - I reconcile - it is of God.  It does glorify him.  I believe you God.  now would you help me with my unbelief.  

smiling of course.

10 comments:

Collegegirl said...

Kelly and John-
I just wanted to drop you a note of encouragement and tell you how thrilled I am that Kyle drank from a bottle. He is getting stronger on a daily basis and he is in awesome hands. He has AMAZING parents who are doing everything they can for him. I am praying for the Sherrill family and hoping that Kyle continues to get better!!!

Anonymous said...

Girl, I love the good news! It is so great to come here and find out more good news. Keep that smile on your face :) - you are struggling, but I still think you are too hard on yourself! :)
Stef

Anonymous said...

Kelly,

I am at a loss for words to say to you. Maybe I should say that I am at a loss for the "right thing" to say to you to make you feel better. Please know that I am praying for you and Kyle and Jack and Jadon and John......

.... and I am thrilled to hear that Kyle is doing well! He'll be home soon.

Candy Humber

Anonymous said...

I can hardly wait to hear about another good day for Kyle!

Still praying, still believing and thanking God for all He has done with Kyle and the Sherrill family.

Candy Humber

Gail Alexander said...

It is okay to be hurt and confused. I agree with Stef - you ARE too hard on yourself. Give yourself time to heal, to grow, to mature into who God wants you to become through all this. You are probably grieving (in a way), and you have to go through the process. Please cut yourself some slack.

How bout some new pics? I'd love to see the one with his antennae on!

Anonymous said...

So short and straight to the point (really reads like a blog john would write, hehe). You're an awesome mom. I wish I had a mother in my life that actually cares as much as you do. It's great to read upon the good news from you. This past Wednesday there was a service at church that talked about how hard we are on ourselves for being who we are and always complaining cause we're not growing. It was said within this message that we need to make sure we are always in our Bibles and growing to know who Christ is and read on how he would handle things. Just remember that you are a full time worker. You're raising a family at the same time of trying to stay by a child's side in the hospital. Even though you are a bit hard on yourself, you're still teaching others who are reading. You are not giving up and you are continuing to deal with what God is giving you. His love is amazing and your love to your family is amazing too, by what I read. Don't discourage yourself. Just encourage yourself to do continue to do a bit better next time. You're not promised tomorrow. You're doing an outstanding job and it's uplifting to me to see that we all make mistakes and God still loves us as if we were born yesterday!

Anonymous said...

.....praying for you.....

Mimi Brown said...

WOW!!! GO GOD! GO KYLE! Carie just called and told me to read your blog because Kyle is taking bottles! PRAISE THE LORD!!!! Did she tell you what I felt like the Lord gave me about/for you?

Anonymous said...

JUST WANTED TO LET YOU KNOW THAT YOU ARE IN MY THOUGHTS AND PRAYERS

Anonymous said...

For Kelly ...
Proverbs 31:25
"She is clothed with strength and dignity and can smile upon her future."

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!