Kyle's NICU Story in Pictures

Sunday, March 22, 2009

Quick post - A very cool and very important :) person at Hermann emailed to check on kyle today since his surgery and I was updating him on kyle.  This has been such an exciting week - and really needed - last week I was feeling really discouraged about kyle's developmental progress - you know it seems like he waits until he has us all in an uproar and then he just lets out with these huge leaps and bounds in growth!  here is a piece of my email.

Kyle is very heavy in therapy right now so it feels like we are working very hard.  But - you need to walk up to the NICU today and give a hug to everyone in there that fought so hard for kyle (I am getting to the why!!!!)   do you remember those days in November when it was so grim - kyle's brain bleed had gotten worse.... all the way to a grade 3 IVH.  But no one gave up - even when I felt like I had to as a mom - no one gave up.

Kyle started saying words this week!  WORDS - and he is only 13 months corrected.  He says "cookie".  I think most 23 weekers that survive have severe feeding issues and Kyle, a CMHH NICU grad! :) , says "COOKIE"  .... sounds more like "too - ckie"  and he also started saying "outside" today.  One of our (doctors and therapists) biggest fears for kyle due to his brain injury has been motor planning.  being able to carry out a desired action the way he needs too.  Today we had all the neighbor hood kids over in the back yard (yes we are still in isolation!) with Kyle's big brother's and when he heard them out there playing - he crawled over to the door and pulled himself up and stood on his tip toes to get his fingertips on the door knob and I said - "do you want to go outside" and he looked back at me and said "out - side"  sounded more like "OU - SIGH"  ADORABLE and AMAZING!

I really am amazed.

oh - and this is a pic of jack when I asked him to help me put away the groceries..... these are the straws!

Wednesday, March 4, 2009

Surgery went great!

We are home... they are all asleep.  Sometimes I feel so accomplished, grateful, satisfied... not sure the word... when the day is over - all 3 boys are safely in bed and the day has turned out good.  :)  Kyle did great today!  One of our dear friends and one of our favorite babysitter's too spent the night to watch the boys this am and Nonna came down to go with us!  and our aunt and one of our cousins had come to sit with us and even brought donuts!!  We left at 5:30 am and kyle thought that was the best thing ever.  Being drug out of bed in the dark to play with mom AND go Bye Bye!  what could be better!  he was in the best mood - didn't even think about the fact that he could not eat!  ...... until we hit traffic and he caught a glimpse of the diaper bag... it started to get ugly - but luckily he was distracted with my iphone and the rest of the morning went well.  long story but we have gotten to know the CEO of the CMHH and he knew kyle was having surgery so he was there this am to greet kyle and introduce us to all the amazing operating room directors - everyone was great.  We met with the team of surgeons and nurses and anesthesia team - ALL AMAZING!  they took him back about 9 am and he was done by 11 am.

Just as the waives of nerves and nausea were setting in for me - in walked some of our friends we met during kyle's stay in the NICU.  This couple had a 23 weeker in the NICU as well - I speak of them often in my blog - their son's name is Matthew.  He passed away in December of 07.  I couldn't believe they were there!  and they brought cup cakes - darn amazing cupcakes too!  so we were well fed and honestly - sounds strange to say - but we had the best conversation.  They spent the whole 2 hours keeping my mind busy - I am so grateful for that!  grateful when I think about how hard it is for me to be in that building, the Hermann tower, that elevator - how much more they must hurt and still put aside their hurt to be there for us....
I learn so stinking much every day lately.   So many of kyle's nurses, NNPs, and docs came to see him and us today.  Let me stress and say or shout or jump up and down... I LOVE this hospital and their staff.  they truly are a hand picked team of amazing, gifted, loving and brilliant people!  I am overwhelmed so frequently of how much people have done for us and our family.  how much people love and give and how that changes and affects - every time.  like scripture says - truth.  Love doesn't fail.

Before I knew it the 2 hours had gone by and kyle was great!

now let's define great... :)  I was soooo relieved when the surgeon came out and said how great it went!  I was so glad to have the hurdle behind us!  It felt like a finish line to me!  a finish line of Kyle's acute medical preemie-ness.  if that makes any sense.

of course kyle will still be followed by high risk and neurology but for the right now stuff we are looking at - this was it!  we are free to focus on therapy and life!!

so anyway - back to kyle being great - so I was releived but the look on that sweet little buddy's face when I got to him was a drunken... "HELP ME!" he was sooo sad.  he just sank into my arms and went right to sleep.  He is still (at 9:23 pm) VERY groggy - he has taken bottles and some cheerios - he has given some half grins when you tickle his little hand but other than that he is asleep or really groggy and fussy.  He screams when he has to tee tee!  all mom's of boys who have gotten circumcisions remember that!  and he is pretty fussy when he is awake - but right now he is asleep!  and healthy!  recovering!  and well!

I am so grateful for everyone praying!  please keep asking God to help him recover quickly.

I came home to another one with vomiting and headache!  and the other one with a fingernail falling off from a door slamming injury!   sounds like a house of 3 boys huh?

off to be early - I think the emotionally being worn out is catching up to the regular mom  physical worn out!  but I couldn't be happier!

kyle transferring funds on the iphone just before surgery! j/k.

kyle after surgery.  so sweet.

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!