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!!!!!!


Wednesday, September 24, 2008

First Day of Kindergarten!

The first day photo

The greeting from his teacher!

the family photo - taken by the teacher!

the hug!

the departure!

a bit of hesitation!

a bit more hesitation - (this is his nervous look)

Jack - even more hesitant (it takes him a few times to settle in).
After this photo came the crying and sobbing!

Kyle was thinking - uhhhh  - tell me your not leaving me too?!?!

Wednesday, September 17, 2008

Still thankful... working on not being frustrated! :)

Before I update - I must vent one thing... Learning that stuff and things aren't important is nothing compared to being nice to an insurance person!  I have not met one neighborly person yet - you know the commercial.... like a good neighbor, state farm is there!  Not so much what is going on.  And I get everyone is stressed a bit right now - but I had 7 separate conversations with State Farm insurance reps on tuesday and none of them matched on their answers to my questions or suggestions on how to move forward.

Anyway - we have so much to do - we have taken pictures of all the damage - we have to list every item that was damaged, where we bought it, how much we paid, how much it would cost today, and how long I have had it.  to put this into perspective a bit - the only rooms with out water damage were 1/2 the kitchen, laundry room, office we think, and entry way.  All living room and bedroom furniture and most all in those rooms is "unlivable" that is what the insurance people call it!

We have to find temp housing and I found out today the closest ones they have to offer are in Katy - not so much going to work.  Kyle still averages about 4 visits a week - in fact this week - we still will make 3 visits and we are getting that in the last 2 days of the week and we cancelled two due to hurricane Ike.

So for now we are at the parent's casa - moving much of our salvageable stuff to storage.  We met with a state farm person late today and she was really nice!  Not sure if we will agree on what is "damaged"or not but she was really nice and that was refreshing.

Now that I am done complaining.... (and I do feel better!)  

Kyle heads to Dr. Hitner tomorrow to have his eye checked.  We also go to the high risk pedi tomorrow for a check up.

the floor in Kyle's room
Kyle's ceiling... and roof... and well sky too!
Jadon and Jack's Room

Jadon and Jack's "used to be" bunk beds

Jadon and Jack's Room

John and Kelly's ceiling

Sunday, September 14, 2008


I ended a long afternoon today with a friend asking me... "Well... Kelly, can you say you are thankful?"

Yes... I am thankful!  I am so thankful.

My whole family is safe.  Unfortunately our home did not do as well.  We have 4 trees on (or in) our home.   When  friend called to tell us our home was damaged i never expected what I saw when we got there.  I am not sure even how to describe it.  I'll upload some pics when I can.  For now we are trying to salvage what we can.  most furniture is soaked ... mattresses.... all walls but one I can think of...

all for now...  our internet is off and on.

Kyle is doing fine - we are all doing fine.  Lots of work to do... but seriously... here is what is in the front of my mind...

it is stuff.... just stuff....  money and stuff are things of this world... they just don't matter.  

Thursday, September 11, 2008

Ike is on his way.

Well... it is official. Kyle will ride out his first TX hurricane this weekend. We have all the necessary supplies - generator, oxygen, battery back up baby monitors, extra tubing, tons of baby food, formula and water. We will be in Conroe (at my mom's house) for the storm. Conroe will take the same hit as the woodlands but Pops and Dedy have a huge generator that will keep kyle's ( and let's admit it... mine too) life running just as it should. Might be a little crowded over there with the 14 other family members but we are going to make it like a party!

I don't have any idea how bad it will be or if it will be bad at all. You know we did all this several years ago when I was pregnant with Jack and the hurricane - thankfully - was a no show!

Either way we will be prepared.

Be praying over all the little lions that are still in the NICU and their mom's and dad's that will ride out this storm with so much extra on their plate. and pray blessings over all the nurses and doctors that are staying all night at the hospital to take care of everyone! and what a picture... teeny tiny forts (incubators) with teeny, tiny preemies being loaded onto rescue helicopters at UT Galveston to be moved to safety. I can't imagine what these mom's must feel today. God be with them in peace and speed in travel.

Father, watch over these children of yours.

You know if you weren't worried about the storm all it took was a trip to the grocery store to decide that maybe you should be - it was pretty crazy around here. But really it was amazing to see so many people caring about others and to see so many working together to keep everyone safe.

so our back yard is clean, cars in the garage, bags are packed, we are off in the morning :) -----

Tuesday, September 9, 2008

Kyle Eating

Kyle's eating has been an interesting thing to me.  From a mommy perspective:  kyle is doing great.  if you were to put him next to all the other 23 weekers I know I would say his eating is miraculous.  This is an area that kyle has not had much trouble in.  since the 1st bottle in NICU kyle eaten like a champ.  no aspirating, no reflux, no Gtube.  He has done great!  When we got home - same story - and then we started cereal.  He did start spitting up but that was about it.  NOTHING - again compared to what many other micro preemies go through everyday.  As we got further and further into rice cereal he started gagging in addition to the spitting up - he would only gag on the 1st few bites of rice cereal then he would get used to it.  Then when we started baby food he did great - some foods made him gag and some did not.  I had a hard time finding a pattern.  So we did a swallow study - pulmonology though that he was not coming off oxygen b/c he might be aspirating or aspirating after refluxing.  Both proved to be negative.  Kyle did have an insufficient suck/swallow pattern and was recommend to speech therapy.  Many of the doctors, nurses and therapist also did not like that kyle was disinterested in eating and especially in the bottle.  I really in my gut felt like he was just much to busy to be bothered having to eat!  My other 2 kids did this also at 10 months.  I think early intervention is imperative to all micro preemies - so on to the speech therapist we went.  She feels like kyle has a hard time getting organized to swallow - I can't remember actually if I journaled about this a few days ago - anyway -  she suggested a few exercises while we eating and they have worked great.  They also suggested a registered dietician.  She has been great.  We are actually switching kyle to regular formula.  They are thinking the high calorie is not needed.  He is 10 months old - 6 months corrected and almost 19 pounds!  and he wakes up after 12 hours of sleep 13 hours without eating and could care less about a bottle!  so they are thinking this will help!  however b/c kyle is on WIC I have to get the okay from the high risk pedi to give to my pedi so write a Rx to take to WIC so that I can get the new formula.  (well - get it paid for anyway!)  So it took 2 doctors, 1 therapist, a dietician, and a government worker but we are getting kyle new formula this week!

Kyle is doing good on baby food - we are now on stage 2 mixed foods and he is in heaven.  the gaging only seems to happen sometimes - I really think it is the organized thing that the speech therapist was talking about.  When food passes our uvula (no idea how to spell that) it triggers a swallow.  We don't think about it, it just happens!  For kyle they are thinking this might take some time to get "organized".  if he is not ready for it or not concentrating or paying attention then it catches him off guard and he gags on it.  but then when he catches up and his brain recognizes that we are eating - he does great!  The speech therapist called this an immaturity - i am thinking this means he will get better and outgrow this.  To me that is an even better option than learning to compensate for it.

So that is the scoop there.  OHHH - the whole point of that story and update - the OT, PT, ST all recommend that I put kyle's food in front of him to play with while we eat.  So I do - well one day i got called away before I started feeding kyle.  one of the other boys needed something.  when I came back - I found an impatient little boy trying to eat dinner by himself!

What a great milestone!  he was trying to get his food to his mouth!  I was so proud of Him!  He really seems to do things in his own time - just as i get a bit worried - the therapists move into high gear - kyle amazes us all!

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!