Kyle's NICU Story in Pictures

Thursday, September 25, 2008

Look Mom No Tubes (during the day)/

We went to the Med Center last thursday for appointments - I was shocked at what a mess it was from hurricane Ike down there still.  Traffic lights twisted and facing the wrong way - trees down everywhere - but none the less there was much traffic.  Hermann was eerily quiet - Some of the glass in the main entry way was damaged so the whole area was blocked off - maybe that made a difference.  But we made it to our appointments and got to visit some of our nurses from NICU also!  

Kyle has GREAT NEWS to report!!!!!  His high risk pedi took him off oxygen during the day!!!  I called john and was so excited - who cares about a jacked up house - kyle is off oxygen!!!! (during the day anyway!)  It is such a freedom  - during the day now he is like a regular baby to cary around - no giant tank to cart with you - no wires to get stuck and almost yank his face off (oops! j/k but other mom's with this you know what I mean!!)  just a regular boy!!!  We are excited - however kyle is far from a regular boy - she also said he was developmentally on target for a 7 month old!  He is really doing great!

I have a preemie mom question - since we have come off oxygen during the day - Kyle is a bit fussier, I though I noticed his mouth a bit purple on the inside like it used to get - he was fussing at the time but when he calmed down it went away - and his slow heart rate alarm has been going off about 3 times a night.  anytime I do spot checks during the day he his o2 saturation is 99....  any thoughts?  he is cutting a tooth right now so that really could be the fussiness - but has anyone else noticed any of this when weaning?  My doctors seems to care mostly about the numbers so they are not concerned but I am just wondering what other mom's are noticing.

Then we went to Dr. Hitner b/c one pupil is larger than the other and one eye opening seems larger than the other at times too.  Kyle's enlarged ventricle and PVL is on his left side near some optical nerves so I guess checking on this stuff stays in the front of my mind.  She checked him all out - dilated and all!  Kyle's eyes are perfect she says - no nearsightedness, no glasses needed, no ROP, no disease - perfect.  and the best news is he looks so good she doesn't even want to see him again until he is 4!

So 2 GREAT - EVEN MORE THAN GREAT - appointments in one day.

Occupational Therapy resumed  this week (after Ike) and we mostly worked on feeding.  Kyle still could care less about the bottle. he takes about 2 ounces each feeding - but he love his food!  Now I say that and last night he drank his whole 6 ounces at dinner.  anyway - his doctors are not too concerned about this b/c he is gaining weight and likes to eat baby food.  We have had the gagging problem that sometimes ends up in full blown vomiting.  and as the speech therapist pointed out I really do feel like it has to do with textures and when any texture - thicker cereal, a small chunk, hits the back of his throat he gags.  once he gets used to it he does better.  Our OT today suggested using an oral tool or baby tooth brush before we eat to get his mouth ready and used to something being in it.  Then if I am feeding him green beans baby food - mash up 2 green beans and mix it with the container.  then have some water - b/c strange enough... he does not gag on that - most babies I know really get choked up on water!  he drinks water from a cup (if I hold it) very well.  and if he starts to get gaged on the food offer some water to get the pieces of food down his throat.

this worked great - kyle made it through a whole meal with some texture with no vomiting!!!  This is a first.  He did gag several times but each time I would either distract him or give him a sip of water.  The distraction idea was interesting - b/c the signal (or lack of signal or immature signal) comes from his brain that causes the gag when I would distract him we was able to swallow.  I'm sure I am butchering that philosophy but my point is that it worked and our OT is brilliant!  We will be doing this 2 meals a day until he gets used to textures and then move to 3.

You can also see some of these motor planning and coordination things in kyle's play - he may respond delayed or show on his facial expression that he understands but actions maybe slower to follow.  His movements are still very gross motor rather than moving to some fine motor. Meaning his motor planning and coordination is still a bit immature.  

Kyle is doing well with the crawling position.  Previously if you lifted his lower torso off the ground his legs would still stick straight out - he prefered to stay in extension.  This can be a sign of tightness - CP.  But for kyle they just thought it to be lack of time in the womb.  when term babies are in the womb all curled up and pushing against mom - kyle was laid out flat in an incubator so he did not develop the same way.  So now after several weeks of working on this when you lift his tummy off the ground he pulls his knees up under him and 2 days ago for the first time he stayed that way when I let go of his tummy!  He is making good progress.  

We are working on some motor planning now - setting a toy off to his side and encouraging him to lean over where he has to hold himself up and get the toy.  we are also working on putting objects in a bucket, the feeding, crawling position, signing, moving from sitting to tummy, and turning on his tummy - like to look for a toy or get to a toy that is beside him instead of in front of him!

so lots going on - all good!!!!  our house is being gutted now - we did meet our insurance guy - he is nice.  and we found a water extraction company that will help us get the water out of our furniture and make decisions for furniture regarding what is salvageable.  So as soon as power comes back we can get going on this.  I think we have also hired a contractor - he seems nice too!

We have moved into my moms and for now have decided to stay there - all kyle's therapies and home medical companies have been moved so until we get the final word on where we can live and what they will approve - we are staying put - we hope to stay put for the whole time.

AND we got word from this contractor that he would like to have us back our house by christmas!!!!!!

YEA!

11 comments:

Tabaitha Kaye said...

I'm so thrilled for Kyle! Praise the Lord!

Anonymous said...

Congrats! Girl that is so wonderful! :)
Kyle is a little miracle :)!!!!
Stefanie Oney

Anonymous said...

Hi, I have read a lot of you post but never left a message. I have a 23 week 2 day boy also, I found you post not long after he was born. Everytime I read it I think god I know how that feels. I know how much it hurt and so on. I bet you have a lot of people to talk to but if you ever wanna chat. I have a my space and e-mail Flowerchild22f@yahoo.com and you can find me on my space with the same E-mail address. I have some pic of my little Sebastian on there also Hope to chat soon. Anyone reading this is also welcome to send messages or see my my space. good luck to everyone.

Anonymous said...

O and I think it is the age my Sebastian has started crying a lot during the day. I think it has a lot to do with teething. It can be so overwhelming that I just have to go out side a breath a minute. He is a good happy baby though, he is just grumpy lol

Anonymous said...

I am very glad to hear about Kyle being off oxygen during the day. I know I haven't left a comment in a long time. However, I do check in on you all periodically. Take care and know that there are plenty of people out there still praying for the Sherrill family!
Candy Humber

Tracey said...

Hey there Kelley! I have been having trouble viewing your blog so today was the first time since 9/24 that I have been able to read your blog. I am so thrilled about all of your good news! So many wonderful things going on in your life I can hardly contain myself. Even with the mess with your house, I think it is wonderful that your contractor is hoping to have you guys home by Christmas! I must say once again that you are doing a wonderful job with Kyle's therapy and feedings. Kyle is so blessed to have you and John as his parents.

Much Love and Prayers,
Tracey H.

Anonymous said...

Wow Kelly!!! Tears of JOY for Kyle! What a miracle!
Karen Tinnes =)

amyoutlaw said...

That's such great news all around. Gives us hope!
Amy - Rhys' aunt.

Dewayne said...

God Bless You, Kyle!!!

Amy McCoy said...

Hi, I was given direction to your site from a new nurse at our hospital (in Michigan) that worked at Hermann. I love it. It gives me hope in our long haul. We have a 23wk 3day boy, Cody. He is now 34wks 3days. We are fortunate that all is well except for lungs. He's had a short (6hr) stint on SiPAP and a 23.5 hr stint on CPAP, but he gets so tired hes back on the vent. I pray nightly for the weaning of the settings, but to no avail. How did you make it during all of those long periods of growing/sleeping. I feel like we aren't getting anywhere! Keep up the posts! You help keep my spirits up! Amy

Lindsay said...

Wow...what an amazing story this all is. Except that it's not just a story. It's your life. I found your blog because a neighbor of mine and I just discovered we are both bloggers and we were talking about all of the blogs we read. She asked me if I had ever read yours. I hadn't, so I looked it up. Then as I am looking at the pictures from the first day of Kindergarten, I realize the school is Sonkids. My daughters have gone to Sonkids for a few years. Then I remember vaguely hearing about a Mom at Sonkids who had a baby very early. This was you! I think you may live around the corner from me. Small World. Your blog is great and your "story" is even greater. What amazing courage and faith you and your husband have. And what an amazing God we serve. Thanks for letting us in on this journey.

Lindsay

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!