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 26, 2011

Day 85 of the Feeding Tube

Wow - we are getting closer and closer to being on the feeding tube for 100 days.  Thankfully he only wears it at night now, although I don't know if that makes it any easier.  It does make the days easier... not having to worry about someone pulling on it or it getting in the way... but in some ways its a bit harder.  I have to put it in every night and that is a bit trying.  It's definitely not a pleasant thing to do and it's getting more and more stressful every night.  I put it off.  For example, he really should start his overnight feedings at about 9:30 pm and get his medication at about 10 pm but right now it's 10:50 pm.  I have yet to put the tube in yet though because I really just don't want to do it.  He screams and cries.  Most attempts of putting it in involve lots of gagging and having the tube come out of his mouth.  The other day for the first time it came out the other nostril and when I tried to pull it out it got stuck.  I literally could not pull it out.  I freaked.  I really thought, yup, here's yet another trip to the ER.  Thankfully David was able to finagle it out somehow.  I dread having to put it in at night but he feeds so much better during the day without it in.  Granted, it's still not an amount that would sustain him but it's at least getting him used to taking in a larger amount of formula at one time by mouth.

Montgomery County Infants and Toddlers program came out to evaluate Trey this past Wednesday.  They evaluated him and determined that he will qualify for services through the state and county.  He will get Physical Therapy once a month starting January 20 and Speech Therapy once a week starting in the beginning of January (not sure of the start date yet though).  He is considered roughly to be about 1 month delayed physically and about 3 months delayed speech wise.  Interestingly enough, his oral motor feeding is ok.  They determined he can feed from a bottle just fine but his babbling and self care (holding the bottle and such) is behind.  I'm not too concerned about it at all though.  They say by this time he should be babbling consonants (ba, ba, ba or ma, ma, ma) rather than just open vowel sounds (ahhhhhh and owwwww).  I'm pretty sure my other kids weren't doing closed consonants by 6 months either and so far the oldest's speech is just fine.  The middle child is becoming more understandable but following in Bryce's footsteps for speech.  I think I just have late talkers (not sounders though!  They're all pretty loud!).  I'm definitely not going to turn down the help though!  Especially since it's at no cost to us and it could very well benefit him in the long run.

So, as of now the next thing to look forward to is our Gastro. appointment with Dr. Karla Au Yeung out of Hopkins on January 5th.  Hopefully she'll give us some answers to why Trey won't eat any more than 4 ounces at a time.  He'll actually do about 3 ounces and then he'll scream through the last ounce (that's typical but not all the time).

We had a great Christmas with the boys and they had a blast opening up their presents.  Trey even got in on the fun!  He was all into tearing the paper off of the gifts.  We spent the entire day with family, which is always nice.  We went to my husband's family for brunch and my family for dinner.  The boys just love being able to see everyone in just one day!  It was an incredibly blessed day and we were so glad that Trey was able to spend it with us!

Trey with the Angry Bird stocking stuffers

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