Kyle's NICU Story in Pictures

Tuesday, July 29, 2008

Big Day - Kelly

I am so glad to be home from summer - I have been checked out of real life and checked in to 220 life for the past 7 weeks really.  and Kyle has been there every step of the way.  We have done therapy in the 220 university office, in the back of my yukon, motel rooms, chick-fil-a, and many other random places.  I must say - kyle is a trooper - he is your picture perfect 3rd child.  Laid back, easy going, all around happy to be anywhere!  He loved being outside, loved all the attention, loved sitting in the car next to jack and sidney (jack's bride to be) and LOVED all the people!

This has been the hardest summer physically, mentally, spiritually and emotionally that I have ever been through.  These last 3 weeks sealed the deal - tough.  but i can say I am learning and growing faster than ever before.  hopefully i am changing in the process.  all those stories will be for another day.


3 weeks ago I was in between weeks of 220.  I am the administrator of these conferences - or was - (this past week was my last week of 8 years of serving as the admin for 220 SLW). WOW -that is bitter sweet to even type!  I will of course still attend some and be involved through prayer and encouragement - but Kyle needs my attention right now.  He wins!

so - on to his update - 3 weeks ago kyle had 6 (7 if you count a revisit!) doctor/therapy visits.  then we left town for the 3 trip and this week we have 5.  we started the week with 4 then went to 6 and now we are at 5 and it is only tuesday night.  In addition to kyle I work 2 days a week (only 5 hours each day) and one of those weeks my awesome babysitter was out of town.  oh and there were conferences to prepare for.  but the business is not the problem.  I am cutting back on my work to one longer day a week.  I have resigned from the admin of 220.  so now I will focus on kyle and jadon and jack and john.  wow - that is alot of boys to take care of!

so why all the visits and why the increase in attention for kyle?  Kyle's doctors are getting concerned as to why he is not weaning on his oxygen.  He has had amazing weight gain - he is 17 lbs 6 oz which is between 5 and 10% on the growth chart - really!  the one for a 9 month old!   however even thought that thrills me - the doctors are concerned b/c he should have weaned.  he only started on 1/8 liter. he has been tested for pulmonary hypertension and is clear of that. So pulmonology checked him out 2 weeks ago and they feel like he is having micro aspirations - it is hard for me to believe b/c I feed him all the time and he seems to eat fine.  now since we started cereal he has been gagging and spitting up more.  but still has not trouble with his bottle.  she also thinks kyle has reflux - which shocked me b/c he has good weight gain and the only person crying when he spits up is me b/c i am so tired of changing outfits and smelling like spit up!  but really it does not bother him to spit up.  she looked at his throat and said it was only mildly red.  but he does have the slow stomach emptying b/c he can spit up frequently several hours after he eats.  but he never spit up when he was only on the bottle - only since we have started cereal.  but the pulmonologist feels like he may be refluxing just enough to aspirate.  She diagnosed Kyle with floppy cartilage in his trachea and/or esophagus.  This makes the aspirating and reflux more likely.  this is a problem caused by being a preemie - and the neurological concerns for kyle make this all the more important to dig into.  The other side of this is that during kyle's sleep study he had 12 apnea episodes and was hypoxic after just 3 or 4 minutes.  This was not great news to them.  However he does not have these episodes at home - or let me say he does not have apnea episodes that last longer than 20 seconds b/c that is what our monitor would catch.  He has also been having frequent de-sat episodes - so all of this together tells her that we want to do a swallow study, an upper GI and another sleep study.

i have mixed emotions - I am going TOMORROW for the swallow study and upper GI.  I am very concerned about the study.  I have heard of babies aspirating the barium and being severely injured from it.  I have heard concerns about the studies but several of our doctors - I got 3 other opinions feel like if kyle is aspirating - it is dangerous for him.  So we move forward.

the good news is that I started monitoring kyle's pulse ox closely again and he has not been de-sating anymore.  at least not much.  I even started pulling him off his oxygen for bits of time and he stays steady at 94 and one time 96.  this is during sleep.  he took a whole 2 hour nap earlier this week and never de-satted below 94.  then when he was sitting up playing in my lap he was satting 97 - this is all off oxygen.  on the oxygen he is still around 98 and sometimes 99.  I also did this feeding him and he satted around 96 during most feedings.  his heart rate was up to 150 or 160 during feedings but would be around 110 to 115 all other times.  not sure if this is normal?  so I feel like he is making progress - so I called 2 of kyle's doctors and they said that 4 days doesn't take away 4 months of desats so we should go ahead with the study.  so we go tomorrow.

i would love thoughts about any of this from other preemie moms.  is it normal for them to do great with a bottle and then have trouble with cereal?

oh - that is the other part - after pulmonology we had therapy that week - Kyle has a couple of reflexes that have not integrated yet.  she said this can be a sign of CP and for now we will give him more time.  the other thing is that during the 2 week of our travels kyle started tongue thrusting and sucking on his tongue.  Kyle's physical therapist said by my description that she did not think these were seizure related (her biggest concern) but still things that she did not like to hear.  however - we met with a speech therapist and she gave us some exercises to do and if kyle gets it in a month then we will continue but if not we will start speech therapy.  we are 2 weeks into this and we are very diligent about our exercises and I am not sure I see improvement.  but I know what to do and we are definitely on top of it.  I would also love to hear from some preemie moms out there if you have any thoughts on this.  I really thought that kyle did so good at the bottle that we would not have ANY eating troubles and we might not - but she is concerned about mouth coordination and some oral fixations for kyle.  She also said that she is noticing some left side weakness in kyle.  this is strange b/c he was given a prognosis of right side cerebral palsy.  I see the areas that she mentioned and we have increased therapy for this and increased and changed his infant massage.

so please be praying over kyle in these areas.  and please be praying tomorrow - or today - wednesday - for the studies.  honestly - I am really scared - i am on my guard though and praying constantly.  please beg for physical protection for him today.

so for the extra attention of mine that kyle will get ...  ... doctors visits for kyle are increasing but my hope is that this will settle down in a couple of months.  However both of kyle's therapists have said that his need for therapy is increasing.  and we should expect to stay deep  in this for the next 2 to 3 years.  One of them told me that for a child like kyle, at least in what they are seeing, our involvement and willingness to work several times a day at therapy and infant massage over the next 2 to 3 years can mean the difference between "he has cerebral palsy" and "you would never know he has cerebral palsy".  this does feel like alot of pressure but when has raising kids not felt like alot of pressure!  I am just realizing the priorities in my life.  I would give up any activity in the world to give kyle the best chance at life he can possibly have!  His physical therapist said that he is a great learner - that she could really tell what we had been working on and that he was learning fast!  She also said she loved his positioning!

thank you for your prayers today!


Life as a Mom said...

Sweet Kelly...SO MUCH on your plate! You are doing such an amazing job, ESPECIALLY under the circumstances! I will be praying for you & for Kyle today for sure! I hope and pray you also hear from other premie Mom's that can encourage you through this. You are such an encouragement to me sweet sister!

Love and blessings, jen

tigerfreak220 said...

Your dedication for Kyle is amazing. I love getting to serve with you at 220 week 1 in Waxahachie. It was amazing to hear what God is doing in your life and is still doing. I love getting to read updates on Kyle and I have been following along since day 1. I hope that Kyle's tests all go well and that you have the energy to continue with all of this. I will be praying for you!
-Amanda Merritt

Natalie said...

I'm praying, Kelly! Thanks for the update and please keep us posted on how everything has gone today.


Cathy said...

Hi Kelly,

I wanted to let you know how bad the boys had reflux from the time they started a bottle. This is the reason we spent so much time in the hospital. They got choked and aspirated every time they ate. We had one nurse on midnight shift that added cereal to their bottles, it looked like oatmeal. They ate the whole bottle just fine. I was so greatful she had thought of this, eating was keeping us from bringing them home. Maybe try this, we just cut bigger hole in the nipples so the mixture could come out. After the started drinking regular milk, the reflux went away, like it was never there.

Glad to hear you are doing well.

Adam & Andrew said...

Keep up the good work, Kelly. You are taking such great care of him and meeting all his needs. Praying for these requests!

How did the testing go? Hope you get answers soon and Kyle starts to wean from the O2.

Tabaitha Kaye said...

You are a fantastic mom. God knew what He was doing when he chose you as Kyle's mom. Praying for all of you.

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!