Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Monday, December 12, 2011

Day 71 of Feeding Tube

Wow - I haven't written in awhile.  The past few weeks have been so busy, well... it's been busy since Trey went into the hospital and then came home... but this was a different kind of busy.  We had Thanksgiving at our house so I spent most of last week prepping for Thanksgiving and straightening the house up for company.  I wanted to keep Thanksgiving here this year, I really enjoy doing Thanksgiving and I just really wanted to keep the tradition going.  We always have it at our house and I spend the week prepping and cooking at night while watching silly reality TV shows.  I have spreadsheets and checklists galore to help me make it through the week smoothly.  Then I have an hour by hour play book that details everything that needs to be done that day.  This year I even included Trey's feedings on it.

We had 15 people here for dinner and it went wonderful.  I was actually done on time this year and the clean up was relatively easy because everything was done and cleaned up before we ate.  This year instead of eating in the dining room we set up 2 extra tables down the middle of the family room off of the kitchen table and had the food in the dining room, buffet style.  This gave everyone a lot more room to move around!  I think everyone had a really nice holiday.  I know we did!

Watching Punkin' Chunkin' before Thanksgiving
Snuggle Time
The Thanksgiving Day spread!
The Thanksgiving Day crew... the picture is a little out of focus.  I used the timer so that I could get in the picture as well. 
The boys on Thanksgiving... getting sick of me trying to get a picture of all 3 of them looking at the camera and smiling.  It never happened.
Tuckered out after Thanksgiving with his favorite stuffed animal.
The Monday after Thanksgiving we had an appointment with Dr. Maureen Lefton-Greif, a Speech Pathologist at Hopkins that specializes in feeding.  My awesome friend Kelly was able to work with a mutual friend, Robin, to get my January 25 appointment with her moved up until November 26.  The appointment went very well.  She does not believe that his feeding problems are due to oral motor problems.  At the appointment she watched him eat his bottle - I couldn't believe he actually drank some of the bottle! - and watched him devour his fingers.  He obviously doesn't have an oral aversion and he can definitely suck and swallow.  She believes the reason he stops eating after about 20 mL is due to a gastro reason... most likely reflux.  She thinks he has associated eating with pain and therefore he isn't eating much.  He'll stop as soon as he fees the reflux.  She recommended a different gastro, Dr. Au Young, through Johns Hopkins and we have an appointment with her on January 5.  I've been calling every day trying to get in earlier due to a cancellation but I've had no luck.  She also had us start feeding Trey applesauce.  Not necessarily for calories but to try and get him to enjoy eating.  She thought giving him something yummy that was different would teach him that all food isn't bad.  I did that for a few days until he gagged on it once and threw up everywhere.  That freaked me out so I stopped and haven't started up again.  I didn't want him to associate solids with throwing up either. 

Trey trying applesauce for the first time.
Montgomery Infants and Toddlers is coming out to evaluate him for services (free Speech and Physical Therapy through the county) on December 21.  There is a long waiting period for everything which is frustrating because he needs the help now!  I should have been on top of this as soon as we got out of the hospital but I was a little preoccupied with other things then.

Last Thursday the home nurse came and we talked a bit about the NG tube (his feeding tube through his mouth).  I had read on a few message boards that a lot of children have trouble eating on an NG tube.  I wanted to take it out and see how he did.  So I decided (after talking with the nurse) to remove it during the day and put it back in at night so that he can get his overnight feed (to make sure he gets hydrated).  So far it's going ok.  I remove the tube in the morning after I give him his medication and he's been taking 3 out of 4 ounces from his bottle on a regular basis.  That's absolutely amazing for him!  Unfortunately, at his weight now he needs about 5-6 ounces so right now we are fortifying his formula so that he gets more calories per bottle than normal.  So Trey gets to be tube free during the day which is so much easier.  He's definitely not thrilled about taking bottles... it's quite a fight to get him to eat those 3 ounces but he'll do it!  The downer about having it out during the day is that I have to put it in every night... that's not fun.

So right now - Thanksgiving is done for another year, the house is decorated, the Christmas cards are sent, the 2012 picture calendar has been sent to the printer and the shopping for Christmas is almost finished!  I haven't wrapped anything yet but I'm hoping to get around to that this week sometimes.  It's been an extremely busy few weeks! 
Having some fun with Cole as Trey naps.
Decorating the tree.

Trey's first big trip out of the house... to see Santa!

1 comment:

  1. So fun! Love the santa picture especially :-)