Kyle's NICU Story in Pictures

Thursday, February 7, 2008

A good day - Kelly

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

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

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

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

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

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

sensetive? ya - I am.

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

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


GranMammy B said...

Well - HI - I was beginning to wonder where you all were??? I ck here every morning before I head off to work & then in the evening before going to bed -- I "addicted".
Just so very thankful for Kyle's good progress...He IS such a miracle right before our eyes...Everyday!!!
Will continue to pray for you all & expecting nothing short of miracles!
Hugs ~ GranMammy B
Barbie Weller - Mansfield

Anonymous said...

I am smiling through my tears every time I read the miralcle that God is doing and will continue to do in Kyle. You have been so strong and I will continue to pray for you all. I cannot wait for the day when I read " Kyle is coming home!!" I know it will be soon. Your testimony and words of honesty have been such a blessing.


Anonymous said...

what wonderful news! thanks so much for sharing your life with us! Still praying, still believing and thanking God every day!


Kelly said...

Don't feel guilty about switching to formula. Pumping is soooo hard and when it is done with the added stress of a baby in the NICU it is nearly impossible. Congratulations on making it this far on breastmilk!

hallegracesmama said...

Grow Kyle Grow! We are thinking and praying for you often. The weeks in the step down unit were so very difficult for us to leave Halle, as she was so much more awake and like a "normal" baby. Looking back now, that time flew by so fast.

Kelly - I love your transparency as you wrestle with you thoughts and beliefs. So much of what you put into words I have felt and wondered and questioned myself.

David said...

Holy crap this is awesome. I remember when the yall's posts consisted of how he was doing inside of his secluded living environment thing (I'm pretty sure that's not the technical term for it :] ), and now you're talking about you yourself are bathing him!!!!! That's so awesome! Reading this blog gives me such hope and joy!

Be Blessed And Stay Blessable,

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!