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...

Monday, January 16, 2012

18 days without a feeding tube!

The Christmas decorations are down!  Thank goodness.  I felt as though that chore was a huge load on my shoulders.  Now I just need to find homes for some more of the toys the boys received.  We had a good weekend as well.  Bryce called home a few times from Florida and it sounds as though he is having a great time.  He landed tonight at 9 and David went to go pick him up from the airport.  We had a nice weekend with the other 2 boys.  We went out to eat twice, which was really nice.  Cole behaves much better at restaurants when Bryce is not around.  Bryce just eggs Cole on and the two of them end up feeding off of each other.  Granted, he behaved like a 2 year old... under the table a few times... but at least no running around or screaming.

I got a message from the GI office on Friday afternoon that I didn't listen to until Saturday.  Apparently, Trey's upper GI series is scheduled for Wednesday at Johns Hopkins.  I know it's not a huge procedure and it will go fine but I'm a bit nervous about going back to the hospital again.  I'm not exactly sure what is going to go on - I know he will have to drink a bunch of solution and then they will x-ray it going through his digestive system.  I'm not sure if he will be lightly sedated, twilighted or completely put out.  Although, tonight was not a great feeding day so I'm eager to get this over with.  He would scream at the top of his lungs after 2 ounces of formula

Tomorrow we have a pediatrician appointment for his Synagis injection.  This is an injection to prevent Trey from getting RSV.  RSV is a virus that can cause runny noses and cold type symptoms in older children and adults but can be deathly for infants.  Wednesday we have the GI procedure, Thursday we have Speech Therapy and then Friday is his first Physical Therapy session.  It's going to be a busy week!

Friday, January 13, 2012

15 days without a feeding tube!

Trey's doing ok.  He's getting a decent amount of formula in each day, averaging about 700 mL.  This still isn't the ideal number for hydration (730 mL) but he's still not showing any signs of dehydration at all.  On Wednesday the home nurse came to check on him.  She still comes once every week although she didn't come last week because we had the GI (Gastro) appointment.  He's maintaining his weight and isn't losing so that's good.  She thought he looked hydrated, plus his heart rate and breathing rate were extremely normal which was great!  His respiratory rate had been high since before Children's and when we left Inova it was still in the upper 40's to 50's and while technically "normal" it was still high compared to the rates I was told at Children's.  He now breathes at a rate in the low 30's.

We also had the speech therapist from Montgomery County Infants and Toddlers come out for our first therapy session.  She gave me hints on how to help him find his lips to make consonant sounds.  She taught me ways to teach him the beginnings of communication.  Basically, I speak, you speak, I speak, you speak.  So after I talk I'm supposed to wait for him to respond and vice versa.  I also feel like I don't pay any attention to him.  She asked me if he banged on things yet with his hands and I said no.  Um, yeah, well at dinner tonight he sat in my lap and banged on the table over and over.  Yeah, he bangs on things just fine.  David just reminded me that we're more focused on him eating than the other kids so we tend to miss other things.  Did I notice he was banging on things?  No, because we are constantly focused on getting liquids into him.  It went well and I'm excited to see what we're going to do next week.  This week was more of an evaluation again.  Next week she is going to bring a cut out cup to see how he does with drinking from a cup... should be interesting!

There is some frustration though.  Last Tuesday at the GI appointment I was told it should take about 72 hours to hear back from the insurance and then the office manager would call me to schedule the appointment.  Well, I haven't heard anything from them since we were there.  I talked to the dr. on Monday and she said she'd look into it and if I didn't hear from her on Tuesday to call again.  I called on Tuesday and left a message earlier in the day.  Never heard from her.  Called again on Thursday afternoon - no response. Called again Thursday afternoon and finally got a hold of her at 4:30.  She had no idea who we were.  She got his file and there was no request for a GI in it.  Great.  Ok, so the dr. got busy... I can understand that.  What I don't understand is why she didn't call me back 2 days before that.  If she had called me back we could have gotten things moving 2 days earlier.  She just submitted to the insurance for approval today and hopefully we'll hear back from them on Monday.  We can't schedule anything until the insurance approves the procedure though.  Argh!  I did let her know my frustration though... nicely.  I asked her to please keep on top of this because this isn't just a "regular" reflux baby.  This is a baby that has been through open heart surgery... lots of pain..., a drug withdrawal and now has had painful reflux since he left the hospital.  I told her I'm tired of seeing my baby in pain and something needs to be done about it quickly to find out how to relieve it.  I hope I was heard.  We shall see on Monday.

In other news, Bryce is going to Legoland in Florida this weekend!  He left this evening with Grandma and are meeting Grandpa in Orlando.  He's been there since Wednesday for a conference.  I had told him a few weeks ago that he was going but haven't mentioned it since.  After I told him I thought... gosh, I should have made it a last minute surprise!  So since he didn't mention it again, neither did I!  So I picked him up from his classroom at school today with a big posterboard sign that said, "Surprise!  Bryce you're going to Legoland!"  He was thrilled, as was all of the other children in the classroom!  It was pretty fun.  I totally meant to take a picture of his face when he saw the sign but I forgot!  So I made sure to get one of him with the sign before we left for the airport.  He made it safe there tonight and heading to experience the new Florida Legoland tomorrow!

Yes, those are Christmas decorations in the background.  I have yet to take down our decorations.  I'm starting to wonder if I'll ever be able to find the time!  I'm thinking maybe in May?

Monday, January 9, 2012

11 days without a feeding tube!

Last Wednesday we went to the pediatrician to get Trey's head circumference checked.  He is off the charts for height, dropped to 30% for weight and is at 80% percentile for head circumference.  His head is definitely on the bigger side, but it's not growing unusually fast and it follows on the same curve as the growth spurt of his height.  The pediatrician said that she's not worried his head is growing too fast and feels comfortable that he doesn't have any fluid in the brain.  Whew.  That would have opened a can of worms that I didn't want to open!

Trey's scars are getting fainter.  The scars from where the pacer wires are pretty much gone and the scars from the drains are getting much better.  The bottom part of the heart scar is much lighter than the upper part.  In person it's almost unnoticeable.  The bottom part of the scar is when he was cinched up after 4 days of being open.  They tried to close him then but there was still some swelling so they couldn't close.  They closed the rest 6 days later.  So the bottom part is 4 days open and the top part is 10 days open. 

In a few days, on January 14, it will be 4 months since his surgery.  His heart will be fixed longer than it was broken.  Wow.  I can't believe it's been 4 months.  It's so strange.  I don't want to have to go through something like that again but I also don't want to forget the feelings and experience we had during that time.   

4 months later though, we're still have small issues.  His reflux seems to have gotten worse over the weekend.  He had been weaning down on the Zantac over the weekend and that could have been it although he was on Prevacid which is supposedly more effective than Zantac.  Today was a nightmare.  He fussed all morning and hardly ate any of his bottles.  By 2 pm he had a total of 4 ounces.  He screamed while I tried to feed him a bottle and he screamed while he wasn't eating.  He exhausted himself so much that he took 2 naps this morning, but he would only sleep on me.  Of course, Cole just wanted to jump on me so it was a pretty stressful morning trying to either get Trey to eat or Cole to stay off of him.  

Cole went out this afternoon with my inlaws and Trey seemed to do better with his eating.  He started taking an entire bottle again and wasn't as fussy as this morning.  I emailed the Gastro dr, Dr. Au Yeung, this monring and she got back to me tonight.  She said to start alternating Zantac and Prevacid every 4 to 6 hours during the day and see how that goes.  She said to be aware of what medicines he had... it could be that the Prevacid itself is upsetting his stomach.  I haven't heard anything about the upper GI yet so she is going to have the office manager call me tomorrow to let me know where we are with scheduling that.  She said that if he doesn't start taking more in we may have to put a feeding tube directly into his stomach.  She said this is a pretty easy procedure, they just insert it using a needle, but he would have to have it done in a hospital.  At the same time they could biopsy him to see if he has any food allergies.  If there were any, then we could put him on a more appropriate formula.  I'm not so sure I'm comfortable of having to get a G-tube but I definitely don't want to start putting the feeding tube back in every night.  

Either way though, I know God is looking over us.  Right now though, I need prayers to help me just get through the day.  By the end of the night I feel as though I've been beaten up.  I'm clenching my jaw at night and during the day (I have TMJ bad) which by the end of the day is causing tension/pain in my jaw which radiates up to my head/sinus' and down through my neck/shoulders.  I've been seeing an oral surgeon every 3 months since I had jaw surgery in 2003 to adjust my night brace.  I clench really bad at night.  It actually has been getting better over the past year.  The doctor can tell by how much he has to balance my brace.  I saw him after Trey got out of the hospital and was happy to see that my clenching hadn't gotten much worse with all the stress I went though.  However, I haven't had pain like this in awhile so it must have started up again.  

While I feed Trey, Cole just goes wild and it's difficult discipline him while I have a bottle in Trey's mouth.  I don't want to take it out though because it most likely took me awhile to get it there!  I've tried setting him up with something to do while I feed him or watching TV but he prefers to either jump all over me, torment the dog or something else.  Today I set him up with lunch but he decided to just eat it and spit it out on the floor.  Fun.  Well, Zena loved that.  Just frustrated.  So please pray that I get through the day with my sanity and health.  

Otherwise, we're doing ok.  I'm happy that none of us have really gotten sick in awhile and have been pretty healthy.  The house is a disaster though and I'm not sure if the Christmas decorations are going to be put away anytime before May.  I need to keep telling myself though that it's ok.  Things will all fall into place in time... in God's time.

Wednesday, January 4, 2012

6 days without the Feeding Tube!

So Trey has gone 6 days without the feeding tube.  I just decided that I was tired of putting it in at night, he had been doing ok fluid wise during the day and so I've just been pushing fluids into him until about 1 am.  After 1 I head to bed and then get up at about 7:30.  He's averaging about 700 mL of fluid daily, which is about 23 ounces a day.  Some days are more, some a bit less.

Yesterday we went to see Dr. Karla Au Yeung, the Gastro, at Hopkins.  It was a long day.  We left here at about 12:20 pm and got home at about 6 pm.  It was a lot of waiting.  Hopkins outpatient is like a factory.  When you go in, you get greeted by security (I don't know why... all they do is put a wrist band on you, they don't check anything whatsoever) and you then push a button for a number.  The waiting room is huge and it is for a ton of practices.  It's the same place we went to to see the Speech Pathologist, Dr. Lefton-Grief.  After about 20 minutes they call your number and you go up to 1 of 6 registration booths.  You check in and then you wait.... and wait and wait and wait.  While you're waiting, nurses and doctors are coming out of about 6 doors calling people.  We were called back and his weight/height/blood pressure were taken.  He is 26 inches (um, shrank?  last time he was 27 when we were there) and 16 lbs 9 ounces.  Then we went back to the waiting room and waited... and waited. A little over 2 hours later we got called back by the Dr.

I liked her.  I like it when Dr's talk to you.  The last Gastro not only didn't seem uninterested in us, but he didn't really say much to me.  She went through the different things it could be... problems in his esophagus, slow motility in his stomach or colon or reflux most likely.  She said that it's not uncommon for heart patients that had surgery to go through a period of not wanting to eat.  It happens in adults and can even take up to a year for them to take in the calories they need to grow.  I also like it when Dr's can laugh with me.  She laughed because she thought I was so casually blunt.  I just told her like it was... I decided to take the tube out myself during the day and put it in every night.  Then I decided myself that he seemed to be taking in most of his bottles so since putting the tube in every night was stressing the beejezus out of me... I stopped putting it in to see what happened and well, it hasn't gone back in!

So the plan right now is... we're putting him on Prevacid and weaning him off of the Zantac over the next few days.  We are upping the caloric value of the formula he takes.  Normally, an ounce of formula is 20 calories. We currently fortify it up to 24 calories but she wants us to bump it up to 27 calories/ounce.  That way he'll get the calories he needs for the day in a smaller volume.  She gave me the formula for hydration and he needs about 730 mL/day to stay hydrated... but he needs 831 mL to keep growing.  She's fine with anything between around 730 and 831 on average.  She said we could keep the tube out at night but just keep watch on his hydration.  He has never once seemed dehydrated at home - ever (he has however, showed signs of dehydration while we were at Children's... I mentioned it to them but they weren't concerned... looking back, I should have been really concerned.  His soft spot was only ever sunken in while we were there).

Next step is an upper GI, which involves him drinking dye and taking x-rays.  The upper GI series will rule out any other reasons for him not eating.  For example, a partial obstruction, scar tissue or any abnormalities in the digestive system.  The Dr's office is calling my insurance to figure out where and when we could do the procedure.  They are going to call me back to schedule something in about 72 hours or so.

She also wants my pediatrician to make sure his head isn't growing too fast.  Trey has a big head... but I don't think it's really abnormally large... both Cole and Bryce had pretty big heads too but they grew into them.  She wants to make sure his head isn't growing too fast because that could be a sign of fluid on the brain.  That could cause pressure on the brain which could in turn cause vomiting and reflux issues.  We're going to the pediatrician tomorrow to get a head check and while we're there they are going to do his 6 month checkup.

So that's where we are right now.  If the Prevacid turns out to be a miracle drug and fixes him... then great, we don't have to move on.  If not, we'll keep the upper GI scan scheduled and go ahead with that.  If that doesn't show the dr. anything and he's still not eating... there are other things we can do then but she didn't want to get into all of that just yet... which was ok with me.  No sense talking about things we're not sure we're going to do just yet.  My head can only handle so much info at a time!  I'm just happy she's doing something!  I'm fighting just to get 23 ounces into this kid on a normal day.  That's not right. Today at his 6 o'clock feeding he took 60 ounces and refused anymore.  I tried for over 1/2 hour longer to get more into him but he would just scream and turn his head.

As for me, I'm just thrilled I don't have to shove that tube into his nose everyday.  It was definitely wearing on me.  I dropped the prescription off to the pharmacy today for the Prevacid and of course, it's a compound.  That means it will be mixed overnight by the compounding pharmacist and it will need to be refrigerated.  I totally forgot to drop it off yesterday on my way home.  I went today thinking I could pick it up today but nope... tomorrow.  So we start the new medication tomorrow and begin to wean off the Zantac.  I told her that if I could do a Methadone and Valium wean... a Zantac wean was no problem! ;-)