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 30, 2011

Day 89 of the Feeding Tube

Trey did awesome with feeding yesterday.  He had about 23 ounces during the day so we decided to keep the tube out overnight.  Well, he's just so darn predictable because today we've been struggling to get him to take just 90mL at each feeding.  I don't get it, I don't know why when he doesn't get fed overnight he doesn't eat much the next day.  It's not that he didn't have enough yesterday, he should have had enough to keep his energy up to be able to eat today.  It's very odd.  Instead of crying while being fed he just swats the bottle out of his mouth when he's done.  There's no trying to keep it in anymore to get him to feed.  When he's done he uses his hands to get it out and turns his head.  His first feeding at 6:45 am he took 120 mL, (he then got fed every 3 hours from that) then 80 mL, 45 mL, 85 mL and then 120 mL. 

We also got a letter in the mail the other day that informed us that our appointment to the Gastroenterologist had been cancelled and rescheduled for February 14.  Well, that just wasn't going to work!  I made the January 5th appointment before Thanksgiving and had been calling daily to see if there was a cancellation!  There's no way we could wait till February.  So I called and pleaded with them.  They had me call the office manager and thankfully she was able to fit me in on January 3rd.  She said that they were overbooked though and to expect a wait - they would fit us in somehow.  Hopefully it won't be hours and hours though.

On Wednesday this week we had a special visitor!  Hannah, our nurse from Inova PICU, came to see us!  She came to the house to see Trey and then we went to Cafe Rio for lunch.  It was so nice to see her!  It's nice to be able to talk to someone who knows first hand what we went through.  She was our nurse the first 6 days after surgery and medically, she could read him like a book.  She knew exactly how to manage his pain and care for him more than I ever could have.  She was a godsend to have in the hospital - it was nice to have someone that I felt was looking out for Trey as much as I was.  You could tell she got pretty attached to him during our stay. 

Speaking of the hospital... someone let me know the other day that there are still people from the hospital that are reading the blog.  Hello out there!  I have to admit - I actually enjoyed being around a lot of the nurses and doctors in the hospital.  It was nice getting to know them and I miss interacting with them (not enough to do surgery all over again though!).  We met so many wonderful people that made being there a lot more "pleasant."  I really do think, that besides the help from God, it was the people of Inova that helped me keep my sanity during the time we were there.  The staff there took such good care of not only Trey, but me as well.  Thank you to you all!  I had such high hopes of getting to the hospital with a special thank you during the holidays but things just got so busy.  Feel free to contact us if you get a chance! 

I also would like to share our family Christmas card with the readers of the blog.  I really hope that you had a fantastic holiday season and hope you have fun plans to ring in the new year!

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

Saturday, December 24, 2011

Day 83 of the Feeding Tube - Merry Christmas!

Wow, again... a busy, busy week!  The tube has stayed in all week at nights.  Still only drinking on average about 90 mL a feeding.

I wanted to write tonight to wish everyone a Merry Christmas!  I was talking to David this morning and realized that this has been a LONG year so far.  Last Christmas we were just barely pregnant - I was about 2 months along - and this Christmas we have a 6 month old that has already been hospitalized 3 times (4 if you count when he was born!), has had major open heart surgery, was on ECMO for 7 days, an open chest for 10 days, went through a major drug withdrawal and I've now inserted a feeding tube countless times.  I would have never, ever even imagined we'd go through ANY of this this year.  I look back to last Christmas and it seems ages ago.

We went to Christmas Eve services at my father's church (he's a minister) this evening and it was so nice to have Trey out.  It's the first time he has gone to the church I grew up in.  Heck, it's the first time he's gone to church at all!  I just held him the entire time and it was so nice.  He behaved so well and just played with the little reindeer on his feet the entire time.  We are SO blessed that he is able to spend Christmas with us this year.  I am very looking forward to tomorrow to spend a wonderful Christmas with all 3 of my boys and my husband. 

Merry Christmas to all and to all a goodnight!

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'

Tuesday, December 13, 2011

Day 72 of the Feeding Tube - Rice Cereal

Trey did ah-mazing today!  He drank all of every bottle I gave him today!  I also offered him a tablespoon of cereal mixed with 30 mL of formula and he ate it all!  Again, he eats about 60 mL or 2 ounces of formula pretty easy and then it's a bit of a struggle to get him to take the other 2 ounces (sometimes it's 3 ounces easy and the last ounce is a struggle) but he took it all!  If you include the 30 mL he had with his cereal he actually took 1 extra ounce today by mouth!

Today I bought a larger bottle on Amazon, right now I just have 4 oz bottles.  Once I get it I'm going to try to offer 5 ounces at a feeding and see how he does.  If I can get him to 5 ounces I think I'll try keeping the tube out overnight.  Wow - I can't imagine having a somewhat "normal" life!  The only thing that won't be normal for us is that I'm not nursing anymore.  Formula and bottles are a new experience for me.  I have no problem with using formula but I'd prefer not to pay for it.  The idea of paying for something that I could provide is frustrating.  I stopped pumping a few weeks ago because my supply was getting pretty low and the pumping was getting to be too much.  I was trying to feed a bottle, then setting up the tube feedings and then pumping.  It was a pretty long process.  I could probably start pumping more again to try and get my supply back up but I don't know if I have it in me to do that.  The thought of Trey being able to feed himself his own bottle in a few months is also kind of nice.  I've never had that.  I usually nurse the kids until 1 and totally wean at 13 months.

As I write Trey is now receiving his overnight feed of 480 mL or a little over 16 ounces.  He's still set up in the take along swing next to our bed.  His bassinet has now turned into his dresser.  I keep all of his clothes and other supplies in there.  He still doesn't have a room in the house though.  We haven't quite decided what to do with the other kids.  Bryce keeps insisting that he wants to share a room with Cole but I'm not exactly sure if that's a great idea.  We could move the computer down to the basement and move Trey in there but that means a lot of rearranging.  I don't know if we have enough energy for that right now!  I guess we still have a few weeks left to decide.  Right now I should probably just focus on weaning him off of the tube at night and getting through Christmas!

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!