Wednesday, December 14, 2011

Intensive feeding therapy day 1

Our road to intensive feeding therapy

If you have read Gabriel’s birth story you will remember that I do not remember from 10pm on the night Gabriel was born until well into the next morning. Gabriel never learned to latch on. I do not know if his inability to latch has to do with missing those critical hours or not.  I started pumping from day one, well two as the case may be.   We were fighting for Gabriel to get enough food in before being transferred to Devos. 

Once Gabriel was transferred to Devos Children's Hospital at four days old we found out he had complete AVSD.  That set a timer on his feedings.   From the day Gabriel walked into Devos he had a feeding tube.  He had 20 minutes to eat whatever he could from his bottle and then the rest was put into his stomach though his tube. 
We continued to feed for 20 minutes and put the rest in his tube until Gabriel's heart surgery.  After heart surgery Gabriel had issues with a small incision in his portal vein which caused chylis to build up in his lungs.  He was put on a diet of a supplement with zero fat.  The supplement had such an awful taste that Gabriel was tube fed for the whole 60 days.

Gabriel was fed concentrated baby formula after this point to help him make up the calories he missed through surgery and the 60 days on a non-fat diet.  

At a year and a half we were finally able to introduce Gabriel to baby food.  We worked very hard to get him to eat baby food.  He would eat it but extremely irregularly.  We started feeding therapy at this point in time.  I have to admit this therapy outside the home is a point I wish I was better at.  The closest feeding therapist that my insurance will cover is a half hour away and the best is a hour away.  I have no problem doing the drive in the summer but I am not able to commit to driving a hour to work, working a full day, driving a hour home, picking up Gabriel, driving a half hour to a hour to feeding therapy and then a half hour to hour back home twice a week.  At this time Gabe still worked nights so it was just me running all over the world and I was tired.  (Isabella is only 18 months younger than Gabriel... hint) 

We started thickening everything after a swallow study showed that Gabriel was silently aspirating.  We had to thicken for almost a year.  Gabriel has had a lot of issues with this off and on for quite a while.  We were able to also find out that Gabriel has pretty bad reflux which may be why he is not a huge fan of eating.

We have done feeding therapy for the last three summers.  We have transitioned though baby formula, enanced baby formula, thickened baby formula, pediasure, thickened pediasure... We have had moments in time where we thought we were making progress only to have something happen to set us back to square one.  

Today a typical diet consists of: 3 - 8oz cans of pediasure, 0-3 4oz containers of yogurt, one container of pudding.  Yup, each and every day.

Things Gabriel will taste when he wants to- jalapeno pringles, fricano's pizza sauce, ice cream,  sausages, tomato soup, chicken noodle soup broth and that is about all.

Gabriel will no longer even touch baby food, we have exhausted that option.

When we try to put new foods into the mix Gabriel will shut down and refuse to eat anything.

In order to qualify for the intensive feeding program we had to be tested.  This took place almost a year and a half ago.  Gabriel has had regular visits to see if he still qualifies.  The waiting list on the only intensive feeding therapy program in Michigan is over a year long.  We are very excited to take part and start Gabriel on the right path to eating!    

We have three goals for this program-
3. We want Gabriel to be off the bottle.  We would like for him to drink out of something else!
2. We want to be able to brush Gabriel's teeth with out all of the drama.  Currently Gabriel screams, cries, throws up, whatever he has to do to get out of teeth brushing.  It is traumatic for everyone involved. 
1. We want Gabriel to eat.  We would like to work him off the pediasure.  Will he be eating steak by the time he is done with feeding therapy... NO.  We want him to eat we are not specific on how we want him to eat.  He will have to go though stages of puree's and work his way up.  We just want to see him trying things and making progress.

Day 1
Feeding 1 -  just starting we did not do feeding 1 at therapy
Feeding 2 - Gabriel ate a container of chocolate pudding and 5oz of pediasure - Feeding done by both mommy and daddy
Nap time - Gabriel decided to skip nap time
Feeding 3 - 2 yogurts (4oz each) - Feeding done by Daddy

We were getting a baseline of what Gabriel will eat, how he eats and from who.  

Brother, I missed you at daycare today!
Maybe you shouldn't have skipped your nap today!
Sis, I had a very busy day today, there were people watching everything I did all day today!
You always watch everything I do.
Ya but I do that to find the best toys in the house.  
oh Brother, you are funny!