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, February 27, 2012

Our Journey at Inova through Pictures

For some time now I have wanted to post some more pictures of our time at Inova.  I don't want to post them on the main page though because most of them are quite graphic and may be disturbing to some people.  I wanted you to get an actual idea of what we experienced while we were there.

The experience was surreal.  Unbelievable at times.  It was a lot to go through as a parent.  I wouldn't change it for the world though.

So without further ado...

(disclaimer... do not click on this if you cannot handle pictures involving blood or sutures)

Our Journey at Inova through Pictures

(the pictures are in chronological order... click on the 1st picture and continue from there)

Sunday, February 26, 2012

Gastro Update

The gastro dr. went well the other day.  Apparently Trey baffles her.  Trey didn't even gain 1 full pound while on the NG tube, but since going off of it he has gained 2 pounds.  Yet, takes in very little calories.  According to the numbers he shouldn't be doing as well as he's doing, he shouldn't even be hydrated... but he is and he's gaining weight.  Go figure.

She is having us up his calories again from 27 kcal/oz to 30 kcal/oz.  She just wants to make sure he gets enough calories.  Since he's gaining weight she doesn't want to put a feeding tube into his stomach, even though the amount he takes in warrants one.  We are giving 2 mL of mylanta before every feeding to see if that helps with the reflux (it coats the esophagus) and she had him get a blood test to check his electrolytes and such.  She also wrote an order for Trey and Cole to have a stool sample tested to make sure they don't have any bacteria (they both have diarrhea pretty bad still).

Apparently his upper GI series showed that his duodenum was a little misshapen.  This is the part of the small intestine that attaches to the stomach.  She wants to repeat the upper GI when he is a year old to make sure that it is growing normally with his body.  If he remains extremely fussy she said that we can repeat it sooner and also do a study of the lower bowels.  Basically, we're still just watching him and keeping options open.  We go back again to see her in a month.

I think we actually have a break from doctors this week!  Not one appointment scheduled.  Wow!  

Pediatrician Appointment last Friday for his Synagis (RSV) Injection

18 pounds!

Happy baby - he has no idea what's coming.

Synagis Shot #1

Synagis Shot #2

Trey's top 2 teeth broke through!
The poor kid has been extremely fussy this entire past week.  I'm really hoping that maybe this week his stomach and teeth will feel better and he won't be as cranky.  Last week involved a lot of screaming.

Monday, February 20, 2012

5 Months Post Surgery

Wow, I haven't updated in awhile.  There's SO many reasons for that.  Things this month have been a bit hectic and a bit uneventful at the same time.  The beginning of the month started out well.  Towards the middle of the month I started a huge push to get Bryce's classroom Valentine's Day Party organized.  That took a lot of time. It ended up taking a lot more than I had expected.  I have some other little projects going on as well, so with the added party and trying to keep up with "the norm" things got out of hand.  Then - the stomach virus hit the house.  The past week has just been a nightmare.  

Bryce woke up with it first the Friday before Valentine's Day.  He only got sick once thank goodness - but it was all over the room so there was a lot of cleaning up to do.  Thank goodness for our carpet cleaner!  He seemed to do ok over the weekend but then it hit him again on Monday.  He stayed home from school on Friday and Monday but was ok for the class party on Tuesday.  

Monday night, it hit Cole as David was rocking him to sleep.  All over the carpet and down the hallway, then again all over the bathroom.  I couldn't believe it.  The poor kid took it rather well though.  He went to sleep even with the loud carpet cleaner growling in his room.  So that took up most of the night, but I still had to finish getting organized for the Valentine's Day party!  I ended up going to bed around 4 am.  Let me tell you - I am getting old!  I used to be able to recover from that in a day or two - but no, I was feeling that loss of sleep for days!  

Tuesday after the party at school (which ended up going spectacular, thank you!), Trey let loose all over me right before we were to go out to eat.  That plan quickly changed and did carry out instead.  I got changed, got Trey changed, we both got cleaned up and he let go again.  He was not a happy camper.  

Thankfully, that was the end of the boys getting sick that way, but it then started out the other way.  Poor Cole and Trey!  It was a rough few days and the younger ones are actually still going through it.  Friday, the hubby came home not feeling so great and sure enough, in just a short few hours... I thought he was going to die.  I've never seen him so sick.  The poor guy was moaning in his sleep.  I took the kids to my parents on Saturday to give him a break and guess what?... yup, you guessed it, I ended up coming down with it next.  Thankfully David was feeling a little bit better and he took the kids to his parents the next day to give me a break and recover.  This stomach virus was no fun!  48 hours later and I think I'm feeling somewhat normal again.  Still a bit nauseous but I can function.  

Trey had a dr. appointment on Friday for his Synagis injection (RSV prevention) and we ended up back in the office today.  The poor kid had been sick all week but started getting especially fussy over the weekend.  It started Friday night and he just couldn't calm himself unless someone was holding him.  That makes it a bit hard to accomplish anything!  The pediatrician thinks that it's still the virus working it's way through him that is making him so fussy.  I just wanted to make sure his ears were ok and there wasn't anything I was missing.  I tend to avoid the dr's office because usually I know it's just a virus and there's not much that can be done for that.  The Dr's office is just germy.  I'd rather them not pick something else up.  Totally different with Trey though - I call or visit about everything!  With him I think I feel as though since the heart thing was missed, I just don't want to miss something else.  Like he's got another health mystery that's going on or something.  Anyhow,  they told me to put the kids on probiotics to help with their current issue.  Hopefully that will help.  

So for the past week things have just been really, really hectic and I feel like the house has just fallen down around us.  There have been some other small events happen that I wanted to blog about (I made baby food!) and have taken pictures of (I designed some shirts for the family to wear on Tuesday - Congenital Heart Defect Awareness Day!) but I just haven't had the time to upload the pictures or organize my thoughts... and I still haven't.  

This week though - we've got the Gastro Dr. on the schedule for Thursday.  Trey's feeding has been all out of sorts due to the stomach virus so it will be interesting to see what she says.  I've also noticed that his stomach noises have gotten rather loud and you can hear the sounds of liquids sloshing around echoing out of his mouth.  It's rather strange.  We had started thickening his formula with rice cereal but that ended up constipating him so that didn't work so well.  The one nice thing about the stomach virus was that it unblocked him.  

The other thing I'm doing this week... I'm going to try and take back my house.  Each day I'm going to pick a room and go through it.  Things just need to be cleared out.  I started a bit today but didn't get that far because my stomach was acting up.  However, I did bag up all of my maternity clothes to be donated.  I thought maybe it might be upsetting... but no, I'm done.  I didn't feel finished after Cole... I do have to say though, after Trey... I'm pretty sure that our family is complete.  I'm ready to start giving things up and moving down the road of our journey.  

Oh and wow - forgot to mention... on Valentine's Day... Trey was 5 months post surgery!  I am going to make his ECMO follow-up appointment at Inova this week!  I'm not sure exactly what that is just yet but when we left they told me not to forget to make the appointment with the Physical Therapy Team at the hospital.  I expect they'll just make sure that his function is ok and that the ECMO didn't have any negative effects.  I'll find out more about that visit this week as well.

I'll post more after his trip to the Gastro on Thursday and hopefully by then I'll have time to get my pictures uploaded from the camera!

Thursday, February 2, 2012

The Faces of CHD (to honor American Heart Awareness Month - February)

In the past few months I have learned more about the heart and heart defects than I have learned in my entire life.  I've learned things I can't believe I now know!  I watch Lang and Altman (the cardiac surgeons) on Grey's Anatomy and I now can understand what they're talking about!  Not like that's anything amazing... but before Trey's heart condition - it was all just jargon to me.

I've started following blogs of sick children, periodically stop and pray for them during the day and am wondering how families I've never met, but follow through blogs, are doing now that they're out of the hospital.  It's a totally different understanding.

I've learned to survive in a NICU/PICU/hospital.  Heck, I lived at Children's Hospital with no TV and no food or drink allowed in the room for an entire week.  The whole time just watching my sick child suffer - totally unaware that he was most likely having small heart attacks and slowly falling into heart failure.  I watched my child's blood come out of his body through tubes, passing through a mechanical pump and lung and then returning to his body through his open chest.  I watched my child get soaked in blood when he started bleeding out of control (thank goodness I wasn't totally aware of what was going on until after the nurse had gotten it under control!  His gauze had already been a little bloody from the surgery and I had been warned he'd bleed due to the heparin, blood thinners, he was receiving so when it was dripping down the sides of him I just thought it was "normal"... as if there's such a thing!).  All of this has changed my view of being "sick."  I can now see it through an understanding.  I always knew it must be difficult to see your child like that, to live that way... but now I really know.

My child is my hero.  All my kids are my hero in different ways - but Trey... he's caused me to really want to change myself physically.  During the past 4 weeks I've been doing the Couch to 5K running program.  I am so not a runner.  I've always hated running.  My shins and ankles hurt when I run.  Well, Trey's hospital is sponsoring an 8K in April and I am going to run it (well, run as much as I can by April!).  I've always been a walker.  I can walk fast but I am now challenging myself to go beyond myself... and run.  I went and got fitted for running shoes through a running store, I downloaded a podcast on my iphone to help me train and I just started running.  And do you know what?... I can run!  My shins have been doing fine, my ankles are good and I'm enjoying it!  I really like running after dusk (I run the main road up and down in the streetlights on the sidewalk) so that people can't see how much I'm suffering and when I feel like I'm just going to fall down or give up... I think of Trey.  If he can make it through heart surgery, ecmo, open chest, drug withdrawal, a feeding tube for 4 months and painful reflux... I can learn how to run.  I can push myself past what I thought I could do and better my heart as well.  Heart Disease is the #1 killer for women in America.  Exercise can help prevent it.  I can definitely better myself for him - because he did it for us.  We are so much better because he is in our family.

Anyhow, I'm moving away from the point of my original post.  According to the March of Dimes, congenital heart defects are the #1 birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect. That translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)  February is American Heart Awareness month and, specifically, February 7-14 is Congenital Heart Defect Awareness week.  In honor of this, 3 heart mommies...

Ruth from A Trip to Holland
Becca from The Stanley Clan and
Stefenie from When Life Hands you a Broken Heart

... have set up a Pinterest board to highlight "The Faces of CHD."  It is a virtual bulletin board of children (and some adults) that have had their lives changed through being born with a heart defect.  It's amazing.  It really is incredible to see the pictures of all these amazing children that have gone through so much in their short lives.  Not only that but the amount of different heart defects that are out there is mind boggling!  This little organ in our body can create so many problems (granted - it's one of the most important organs in our body to keep us living so that makes sense - but it really is a simple machine - it pumps blood through our body, that's all - but there's so much that can go wrong with it!).

So please, hop over to The Faces of CHD and check out the pins.  Everyone of them has a story and it's an amazing one.  While you're there you can see Trey's picture.... a proud survivor of a congenital heart defect.  He's come SO far in such a short time.  My little heart hero....

To any new readers... Trey was diagnosed with ALCAPA (a RARE congenital heart defect... 1 in 300,000) at 11 weeks late afternoon on September 12, 2011.  He had a heart catheterization procedure to double check the diagnosis on September 13 and the surgeon cleared his schedule to operate on Trey early the next morning, September 14.  ALCAPA stands for Anomalous Left Coronary Artery from the Pulmonary Artery.

Basically, the coronary artery normally comes off of the Aorta and supplies the heart with the oxygen enriched blood it needs to survive and do it's job.  Trey's coronory originated from the Pulmonary Artery instead.  The Pulmonary Artery takes blood that is deprived of oxygen (after it circulates the body) back to the lungs to pick up more oxygen.  Therefore, Trey's heart was getting blood that contained no oxygen and therefore, the left side of the heart (the side of the heart that pumps the blood through the entire body) was essentially dying.  He went into the hospital with his heart working at 7% (ideal is 70%).  He was in severe heart failure.

In order to fix the problem he needed open heart surgery to move the coronary artery from the Pulmonary Artery back to the Aorta.  Sounds easy, right?  Not always so easy.  Unfortunately, where it has to be connected is towards the back of the heart so when the heart is placed back into the body the surgeon is unable to see if the tiny coronary artery is kinked or not once the blood starts pumping back through the heart after surgery.  So they do all of the plumbing work but once it's back in they're blind to if it's actually fixed or not.  A kink meant - he would probably not survive.  Thankfully... Dr. Irving Shen rocked the surgery and all was fixed the way it needed to be!

This blog documents Trey's (and my family's) journey through the entire hospital stay.  I blogged my way through a month at Inova Fairfax hospital and the past 4 months of recovery at home (on a feeding tube... now completely weaned off of!).  To read our story from the beginning click here and then keep clicking on "newer post" at the very bottom of each post.