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....

Friday, December 16, 2011

Day 75 of the Feeding Tube

Wow.  The past 2 days have been very trying.  Trey did great on Wednesday and ate 120 mL at every feeding... so his entire bottle.  Since he did so well I decided to keep the tube out overnight to see how he did.  I kept a bottle next to the bed in case he woke up... but he slept through the entire night!  

Tubeless at night!

Thursday he woke up and I tried to feed him as my eldest went down to the bus stop.  Trey refused to eat.  He screamed his head off while I tried to give him his bottle.  The next 2 feedings he did the same thing, the most I was able to get in during a feeding was 2 ounces.  Finally in the afternoon I was able to get him to eat 3 ounces.  I don't know how I ended up sneaking in the extra ounces at night but I was able to get 500 mL or almost 17 ounces into him during the day.  So I figured I'd keep the tube out again Thursday night.  Hoping that he'd be really hungry today.  Nope.  He refused to eat again today.  I was only able to get 7 ounces into him today.  He just screams and screams at the bottle.  I don't understand why once the tube came out overnight he decided he didn't need to eat.  

Today we had an appointment at his pediatrician for his Synagis (RSV injection) and Rotovirus vaccine.  I discussed the feeding dilemma with him and he was stumped.  He didn't understand, like me, why he started being able to take in 120 mL and then just stop.  He's supposed to take in about 2.5 ounces per pound of formula.  Trey weighs a little over 16 lbs so he should be taking in 32 ounces of formula a day.  That's ideal. My other kids weren't huge eaters... they were very, very fast nursers... but they both gained weight just fine and stayed hydrated.  I don't know if Trey will ever eat 32 ounces but he needs to be at least somewhat close to that!  The doctor thought that we should start tubing him again at night to make sure he stays hydrated.  He did agree with my idea of taking it out during the day to get him to eat more comfortably.  He tried to page the new Gastro. dr. that we are going to see on January 5th to try and get us in earlier but he wasn't sure if she would get back to him.  Today is Friday so I didn't think we'd hear anything today but I'm hoping Monday they might get back to him.  Unfortunately, we're getting close to the holidays and a lot of people are taking off to visit family and such so it might be hard to get in earlier than the 5th.  

So there has been a lot of screaming and crying at our house the past few days - as well as from me!  Not only is Trey having a really hard time eating but yesterday Cole had a blast dumping out baking soda all over the kitchen floor while I ran upstairs for a minute.  He smeared it all over the floor and wow, it was rough to get up!  I had to sweep 3 times, use the swiffer vac, then mop and I can still feel grit on the floor!  Plus, the floor is all smeary.  I was hoping to mop again tonight but today after we got home from the doctor I noticed the dog poo'd all over the house.  Apparently her stomach had been bothering her... it definitely is not a normal thing for her and it wasn't normal poo.  It was such an incredible mess to clean up.  The hallway upstairs, the hallway and the living room!  So that is what I spent tonight doing - instead of mopping I cleaned up crap.  It did get out of the carpet though!  Thank goodness for my Oreck carpet cleaner!

Wow, it's been a long, long day and I'm tired.  Very, very tired. I've been getting good amounts of sleep but I just am still really drowsy feeling.  My body feels like it runs everyday... except that I haven't run!  With that, I'm off to relax!  I tubed Trey already (that's stressful!) and we're going to chill.

Not happy having the tube back in!

Just Chillin'

1 comment:

  1. Hang in there! I hope you can get this feeding stuff worked out...soon. Hey, baking soda sounds way better than dog poo!