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....

Sunday, January 29, 2012

30 days without the feeding tube! - LOTS of updates!

Wow, I haven't posted in about 2 weeks.  It's been a busy here!  Lots of doctor's appointments and just some overall BUSY!  Here's what we've been up to:

Trey is rolling over!  He can roll over, to the left, most times (sometimes he needs some help getting over his arm).  He can also roll back to his back as well.  He's still not really liking tummy time but he's getting there!

Trey is also getting a lot more interactive with toys.  He really, really enjoys this walker he got for Christmas.  He'll bang on it and listen to the music.  Cole just thought it was the funniest thing!  He got a kick out of watching his brother play with something while sitting up!

Tuesday, January 17 - Pediatrician appointment for Synagis Injection (to prevent RSV).  Trey weight in at 16 lbs, 11 oz.  Head circumference is still ok.

Wednesday, Jaunary 18 - Upper GI Series at Johns Hopkins.  My mom went with me to the appointment because I was a bit nervous to be in the hospital again.  I wasn't quite sure what was going to happen.  I knew that he was going to have to drink some barium and they would take x-rays of it going down to his stomach and then into his duodenum (the beginning of the intestines).  Other than that though, I was pretty unsure of the process.  I didn't know how much of the barium he would have to drink and I was nervous that he wouldn't take any of it.  I wasn't sure if they would have to sedate him a bit or if I'd be in the room or not.  So I was pretty nervous.

Johns Hokins is a huge hospital and I ended up parking in a parking garage that wasn't so close to where we had to go.  I got a little lost but eventually found my way.  My mother met me in pediatric imaging and we didn't have to wait long at all.  The procedure ended up being a lot easier than I thought it was going to be and Trey was pretty laid back about the entire thing.  Really, I think he just enjoys being in the hospital!  He was an absolute charmer!

We were able to be in the room during the entire procedure and he ended up only having to drink 10 mL of barium to get the images they needed.  They placed him on his back and put a large x-ray machine over his throat/stomach area.  The tech fed him the bottle while I kept his legs from moving around (he really, really wanted to chew on his toes!).  The x-ray machine took an image every few seconds and it was pretty interesting to watch the barium go down the esophagus into his stomach.  We got the results pretty quickly - no obstructions or problems on the way down to the stomach and the stomach emptied out ok into the duodenum.  There was some reflux shown on the images but the test was mainly to rule out any obstructions that could be causing problems with feeding.

Positioning the x-ray machine, the gel bags are to keep his arms from moving around too much (like in the next picture!)

Loving the gown!  Look at those feet and arms moving!

The x-ray machine

Trey eating the barium and getting "x-rayed."  My mom is to the left of the picture, the tech is feeding Trey and the radiologist, to the right, is looking at the images.

A closer view - you can see Trey's head.
Friday, January 20 - Trey had his first session of Physical Therapy through Montgomery County Infants and Toddlers!  He did ok.  He got pretty hungry and tired half way through so he was a bit fussy towards the end.  We need to work on tummy time.  She wants us to do tummy time once every waking hour.  Um, yeah... my goal is twice a day right now.  She recommended timing it and extending it by 15 seconds every few hours.  I make sure he gets tummy time about twice a day and he rolls around and does his own tummy time a few times a day.  So, I'm close to every hour!

Over the weekend we took the boys to Picture People to try and get a photo of all 3 of them.  I knew it was going to be awful... and yes, it was.  It was a nightmare to even just get the boys cleaned up and dressed in order to leave the house without getting snot or drool all over everything! (well, that's for the 2 younger ones.. Bryce is pretty good at keeping clean when I want him to)  The photographer wasn't that great and Cole just didn't want to participate.  He cried most of the time.  My mother tried to get him to roll a basketball back and forth but that didn't really work so great either.  Never again!  The picture didn't turn out too bad though...

... considering it was truly one of the hardest things I've ever done!  The entire day was exhausting!

Sunday, January 22 - Both of Trey's bottom teeth broke through!  Tooth 1 broke through in the morning and Tooth 2 broke through in the afternoon.  Very exciting... but I also don't want him to grow up!  He's my last baby!

On Monday, January 23 Bryce had off of school.  I took all 3 boys for lunch to McDonalds and then to Michael's to get spray paint for Bryce's Pinewood Derby car.  It went well, considering it was just me and the 3 boys.  I think it was one of the first times I've taken them all out by myself.  I'm still a bit afraid of taking Trey out in public.  I don't want people touching him... or even breathing on him!  That's something I NEVER worried about with the other two kids.  I was so laid back with them - we went out all the time!  Very different this time around with the 3rd.

Tuesday, January 24 - We went to the cardiologist!  I love the cardiologist appointments.  It's when I get reassurance that he's doing ok.  Everyday I wonder how his heart is doing... when we're at the cardiologist I get to SEE how it's doing on the echocardiogram.  It was such an exciting appointment! His heart function was at 67% (remember, 70% is ideal) so it's still totally normal!  Amazing!  I was expecting it to go down a bit this time because he has gotten a bit bigger and I thought maybe the medicine wasn't as effective.  Nope, it's still perfect!  Plus, Dr. Callahan has starting weaning him off his medication!  He came off the Lasix and we were instructed to wean him off the Enalapril over the next few days.  Our next appointment with Dr. Callahan is in April and he'll stay on the same dosage of Digoxin (.05 mL, twice a day) until then.  The Digoxin is the medicine that helps his heart contract stronger.  As Trey grows, he'll naturally wean himself off of the medication.

Trey having his EKG done.

Getting ready for his echocardiogram.

Trey and Dr. Callahan!

Wednesday, January 25 - a Social Worker from Montgomery County Infants and Toddlers came to meet with me.  They had offered me the service during his evaluation and I figured I might as well take advantage of it.  She was a bit surprised to hear that we haven't really been going out too often, well... except for doctor appointments!  She gave me some great resources of things to do with Cole... things the county provides.  They have a playtime that involves circle time and stories that is perfect for Cole and we're able to attend that.  I definitely have to get Cole out more often... well, and myself.  It's a bit odd that I get super excited to go to a doctor's appointment!  It's about time we start doing some other things as well!  She gave me some things to work on this month and she's going to come back next month to see how we're doing.

Thursday, January 26 - Another doctor!  Today was the Gastroenterologist, Dr. Karla Au Yeung.  Great news.... he's gaining weight!  Slowly but surely... at least he's not losing!  Since he is gaining she feels more comfortable not putting a feeding tube directly into his stomach.  Yay!  She reiterated that his upper GI was ok and since he's not resisting feeding too much now she is going to put off having an endoscopy at this time. The hope is we won't have to do that.  We know he's got some sort of reflux going on so we're going to try and treat that.  She doesn't want to have to put him under anesthesia for the scope because he's had cardiac problems.  So for now we're sticking with fortifying his formula up to 27 calories per ounce and she gave me some other things to try if we would like.  We can buy some baby probiotics or try 2 mL baby mylanta before every feeding to coat his esophagus and stomach.  We'll go back to her in a month to make sure he's still gaining weight.  At that point we'll decide if he needs to see her monthly or less.  He's still on the Prevacid twice a day but we stopped the Zantac (by accident!).  We had to refill the Zantac but forgot to pick it up.  We ran out and gave the Prevacid that morning instead.  He seemed to do fine so we thought we'd see how he did that evening.  Again, didn't seem to faze him that he didn't have the Zantac.  So, we're sticking with just the 2.5 mL of Prevacid, twice a day for now.

Friday, January 27 - Yet ANOTHER doctor appointment!  Today Trey got his 6 month vaccinations.  He's about 1 month behind with his shots because of his stay in the hospital.  They also can't be too close to his Synagis shots so everything has to be timed.  Trey weighed 17 lbs 3 oz at his appointment today!  That's huge for him!  He's actually made it out of the 16 lb range!  Cole came with us today to his appointment.  He brought his Power Rangers.  Cole has been really, really into Power Rangers lately and they go everywhere with us.

17 lbs 3 oz!!  He LOVES playing with the tissue paper at the doctor's office!

Cole (2 1/2 years old) waiting for his brother to receive his vaccinations.

So - it's been a hectic few weeks!  He's doing well though!  We're SO excited.  I think we can successfully say...


  1. AMAZING!!! He's getting so big, and it sounds like everything is going pretty well. 67%--YAHOO!! We were just at Child Cardiology after Christmas...we're gearing up for a cath in early March. I'll keep you updated. Love all the pics!

  2. Oh well done Trey! And you to Randi - you've done so well to keep him off the tube and keep the weight on. Fantastic!

    Need to update Em's blog but just to let you know - her recent MRI/stress echo was OK. EF 50%, some LV hypokinesis but no more than expected, PS a bit more severe than last time but on the whole she's fine :-)

    jackie x