Late Night Ramblings from Eli

Hi, everyone.  This is Eli.  I think I'm a night owl these days and Mommy couldn't take it anymore.  She's dozing beside me on the bed and left the computer open so I FINALLY got my chance.  She even left the tv on for me.  Unfortunately she didn't leave it on BabyTV (don't know what that is?  Seriously?  You must be older than five!).  We're watching The Tonight Show with Jay Leno.  It's okay.  I think she was trying to bore me to sleep with the news that was on before it.  That didn't work. 

Now before you say she shouldn't have even had the tv or computer on if she was trying to get me to sleep, let me tell you something:  I am the boss.  Well, tonight anyway.  Daddy tried.  He laid with me for an hour and I didn't give in.  He brought me back downstairs because he needed a break had to get to bed so he could go to work (he leaves early).  We caught Mommy eating a snack so I demanded equal treatment.  Three bowls of Honey Nut Cheerios later I relented to a diaper change and being toted back upstairs.  Then, Mommy tried.  We said prayers, watched a little bit of BabyTV (I'm tellin' you, it's got some of the best shows out there), and then she turned out the lights.  That's our normal routine.  I didn't feel like it tonight, but I let her think that's what was going to happen until the lights went out.  I started crying.  I cried harder & harder until she thought I was going to make myself sick (it happens). 

So, anyway, she tried all these other soothing things to distract me.  She turned on the computer so I could see pictures of me & my family.  I liked that, but it didn't settle me down.  She tried the tv again, but like I said before she tried some boring show.  I'm pretty sure she thought that would work, but not tonight!

Want to know what I think is soooo funny about this?  Well, I know my heart problems are not anything my parents would wish on anyone.  It's stressful.  That's one of the reasons they don't let me "cry it out" too much.  I get sweaty, my lips & fingers turn blue, and I usually make myself sick if I cry too much.  Most of the time we can work it out and it doesn't get to that point, but sometimes I just don't know what I want and I keep crying.  Hey, it's tough to be a baby & figure everything out.  It's even rougher when your body doesn't always allow you to physically do what your mind wants to do.  Which brings me to what I think is funny about this:  My silly parents thought that if there were any type of "advantage" to having a heart baby, it would be that I'd sleep a decent amount!  Aren't they silly?  Last night I was asleep by 10 (gave in too early last night).  I was up by 7:30 this morning which is earlier than my usual.  I took my usual nap today, but I'm still going strong!  Bubba & I played a lot today.  Aunt Kendra was even here and we played a lot.  Mommy & Daddy thought for sure I'd be tired and could go to bed about 8:30.  WRONG!!!!

So, here we are.  Anyone have any questions for me?  I don't know when I'll get the computer back but I'll try to answer them the best I can.  While I have your attention I'll ask you to do some things for me: 

• Keep praying for me and all the babies, kids, and adults who have conditions like mine.  I know you've been praying and I am so grateful.  Please keep them coming. 
• February is Heart Month.  The week of February 7-14 is Congenital Heart Defect Awareness Week.  That's a big deal to us.  My parents have been working hard on some things.  I think Mommy's going to post about that soon so I'll let her tell you what she's been up to, but promise me you'll listen & help out.  It's important to me.
• Become an organ donor.  If you live in Indiana use this link to register.  Tell your family your wishes.  Also, there's a petition going around to make the United States organ donation system an "opt out" instead of "opt in" system.  My family & I think this is a great idea.  It would save a lot of lives.  If someone felt very strongly against having their organs donated they can just fill out a form to prevent that from happening.  If you think this is a good system, please click this link to sign the petition.
• Donate blood.  Please consider donating blood the next time you're eligible.  I've had to receive multiple transfusions after my two open heart surgeries.  One adult donation could possibly be three units to someone my size.  It's a big deal. 

I'm starting to get sleepy now.  It's not as much fun staying up if Mommy & Daddy aren't going to play.  Bubba crashed hours ago....suck up. 

Thanks for reading and check in soon to hear about my parents' plans for CHD Awareness Week!

I Can't Sleep and it's My Own Fault

You would think I'd know better by now. 

After a busy day (physically & mentally) I had some time to myself this evening.  I've been DVRing some Christmas shows.  Some for the boys and some for me.  Tonight I recorded Blake Shelton's Not So Family Christmas special that aired on NBC.  Zachary loves The Voice so I considered letting him watch Blake's show tonight.  Instead I watched it by myself after all the men in the house were asleep.  I'm so glad Zachary didn't watch it!  It was a hilarious show.  I laughed so hard and it felt really good.  However, it was DEFINITELY not appropriate for my five year old!

Then came my bad decision.  I watched one of the movies I had recorded on Hallmark.  It's called "The Christmas Heart."  The description said something along the lines of "a neighborhood bands together to support a young boy who desperately needs a heart transplant."  When I saw the description on our guide, I had to record it.  I didn't know if I would watch it, but I needed it on my DVR just in case I felt the need to watch it. 

I don't know if I thought my euphoric feeling from the Christmas special would float me through a movie that hit so close to home or if I was just on a power trip because I had total dominance of the remote control for the tv with DVR, but I watched it.  The whole thing.  My Blake Shelton Christmas Special happy bubble officially burst. 

The movie itself was okay.  Too many parts were Hollywood-ified, but the point was made:  You just have to believe.
*Spoiler Alert*  In the movie, a 15 year old basketball player collapses during practice.  After being rushed to the hospital it is discovered that he has hypertrophic cardiomyopathy (thickening cardiac muscles resulting in a weakened, enlarged heart).  It's determined he needs a transplant within a week or he won't live.  The teen's younger brother is struggling with his belief in Santa.  He says he'll believe if Santa brings his only wish...a new heart for his big brother.  Miraculously a perfect match became available within five days.  The dilemma is that there's a major snowstorm in the area & all the medical transport helicopters are stuck at outlying locations.  Luckily a pilot dressed as Santa has his own plane and he & his copilot fly the doctor who is in charge of transporting the heart in an Igloo cooler through the storm.  Unfortunately  they can't land since the airport has shut down.  The insistent pilot says "this isn't the Hindenburg I'm flying, all I need is 500 feet and some light to get this thing down!"  Suddenly they spot a makeshift runway on the street below them which is actually the street the dying boy lives on.  It's a neighborhood tradition to light thousands of luminaries along their street at midnight Christmas Eve and this year it was the welcome beacon for the pilot.  He lands the plane and a neighbor drives them to the hospital in his truck.  The whole crew (including the pilot dressed as Santa Claus carrying the heart in an Igloo cooler) rushes into the waiting room where the parents and doctor are anxiously waiting.  When the doctor comes out after the surgery his first words are "he's going to make it."  Then the whole family, doctors, nurses, neighbors, and pilot all hug
 and sing.

I could make a list a mile long of inaccuracies, but I still watched the entire movie and cried.  It was strangely therapeutic.  However I'm still awake now, hours later, because I'm afraid of what my "dreams" will bring.  Dreams is in quotes because a dream implies something good or positive and that's not what will fill my nocturnal thoughts if I were to sleep.  The Hollywood version of what is quite possibly our family's medical reality is still too fresh, too real.  I started to watch Blake Shelton's program again, but it wasn't the therapy I needed.  This is.  I needed to get it out again. 

The point of the movie was to believe and keep the faith.  It made its point.  Faith is something we all struggle with, but I think especially so when we're struggling to come to terms with stressful situations.  There are days I'm mad, days where I'm indifferent, and days where I feel alone.  Those days don't happen often, but they do happen.  That's okay.  Every relationship has its ups and downs, faith is no different.  I always know we're part of His plan even if there are moments when I feel like the plan sucks. 

So anyway, I recommend Blake Shelton's Christmas special for some good music and a good laugh (if you're a grown up!).  And I might even go to sleep for a couple hours now that I've watched SportsCenter twice and done this post. 

Specific prayer requests:
1)  For the real life family we know whose little fighter is waiting in the hospital until his new heart becomes available.  Indianapolis isn't Hollywood and their struggles last longer than the two hour movie.
2)  For all the heart babies (of all ages!) and their families who are struggling to come to terms with their situation and uncertain futures.
3)  For everyone to realize what a big problem Congenital Heart Defects are and how often they happen. 
4)  For more people to become organ donors, for more funding for research to prevent and treat CHDs, and for more people to donate blood whenever possible. 

Thank you all for your support and prayers. 

A Plea

If you're Facebook friends with me you are probably somewhat aware of a fellow heart baby named Caleb.  We met in September 2011.  Eli was minutes out of his second heart surgery and Bryan & I were being escorted to the Family Room outside the PICU so we could talk to Dr. Abraham.  When we walked in there was a couple finishing their supper.  The mom (Katie) made a comment about us looking nervous.  I told her our son just had heart surgery and we were waiting for the surgeon.  She said they did the same thing two days before.  We had a brief conversation exchanging facts about our sons' hearts.  A few hours later she came down the hall and peeked in our room to see how we were all doing.  That's how heart families are, we aren't only concerned with the affected child, it's the whole family because we've "been there, done that." 

In the days that followed, we checked in on each other a few more times.  Caleb was recovering nicely from his Glenn procedure (for more info on the procedures & defects click here).  He was discharged from the hospital before we left the PICU, but Katie was nice enough to come back downstairs to tell us they were leaving and for us to exchange contact info.  She brought Caleb with her and I got to hold him for a minute while she wrote down her information.  Quickly we became Facebook friends and were messaging updates back and forth quite often. 

We had several things in common.  Caleb also has an older brother, Jonah who just turned four.  Caleb was born at PMCH the day Eli was discharged from his first surgery, making Caleb exactly 3 months younger than Eli.  Their heart defects are basically the same; they were each born without a functional right half of the heart.  They had each made it through their first two heart surgeries without huge problems and their paths were paved for their Fontans to be done sometime in 2013. 

As we've come to learn, the path for a heart family is never set in stone and it can change very quickly.  About three weeks ago, Katie & Daniel noticed Caleb's face was swollen.  A visit to the pediatrician led them to a pediatric nephrologist because it was thought something was wrong with his kidneys.  Fortunately, his kidneys were fine.  They took Caleb to see his cardiologist who performed an echocardiogram.  It showed that Caleb's heart was much weaker than expected and not functioning well.  He was scheduled for a heart cath on Nov 1.  That morning in the cath lab, Caleb went into cardiac arrest.  His heart stopped.  Thank God they were at the hospital with exactly the help he needed.  It could have happened at home or the night before while they were trick-or-treating, but in His plan, Caleb was exactly where he needed to be when it happened.  The doctors were able to revive him, but it became painfully clear that Caleb's heart was not going to last much longer.

He was transferred to Riley that night.  St. Vincent's hospital is a wonderful place and we are so privileged to be patients there.  Obviously we trust their staff with Eli's life and Katie & Daniel must have felt the same.  However, St. Vincent's doesn't do heart transplants and that was the only option left for Caleb.  So, off to Riley they go to start the process of getting on the transplant list and then the grueling wait for a heart for Caleb.  He was officially listed on November 9.  Since his cardiac arrest, he has done remarkably well.  Just tonight I saw some footage of him and his daddy doing a dance.  He's very cute and has lots of smiles, but he's not healthy enough to leave the hospital.  Katie & Daniel were told he would not leave until he has a new heart.  The family has moved into the nearby Ronald McDonald house. 

As a heart parent, these are fears that lurk in the back of our minds all the time.  Most of the time we're able to ignore them and live our lives, but then something like this happens.  So of course I'm worried about Caleb and his family, but I have to be honest here and confess that it worries me for Eli. Even if the third surgery "works" it is not a fix.  These hearts cannot be fixed, they can be made functional for a long time until the heart gives out and a transplant is required.  Caleb's heart isn't holding out for the third surgery, why should Eli's?  Caleb's situation brings those fears front and center again. 

In no way am I trying to say that my fears are anything compared to the emotional roller coaster Katie and Daniel have been on in the past couple weeks.  I am amazed by this couple.  From the outside looking in, I'd have to say they have an amazing support system of family and friends.  Almost immediately fundraisers were started to help them finance the stay at the Ronald McDonald house (it costs them $15/night FYI) and other expences encountered as they wait for the perfect heart. 

One of the main questions we got when Eli was diagnosed was "what can I do to help?" I assume they've been asked this a lot lately. If you're reading this and would like to help, I have a few suggestions. First of all, pray. Pray for Caleb's heart and body to hold out long enough to receive the perfect donor heart. Pray for the transplant to go well and for his body to not reject the new heart when it comes. Pray for his family to remain a tight, loving family with a sense of normalcy throughout this process. Pray for the donor family who will give the most selfless gift imaginable -- their dead child's heart so another child has another chance at life. And pray for Katie & Daniel and all other heart families like us who are conflicted with the thought of praying for someone to pass so that our child might live.

What else besides prayer? Sign up to be an organ donor. It's easy. To register, click here. I did it a few nights ago. I've had the red heart on my driver's license since I was 16 indicating I want to be an organ donor, but I registered anyway. After you register, let your family and friends know your wishes. And, if the unthinkable happens to your child, please donate their organs. Eli is under 25lbs, he wouldn't be able to receive the heart of a full grown man, but he could if it were a child.

There are a lot of myths and untruths associated with organ donation. This link and this link help dispel false information and provide correct answers to many questions. I learned a lot from browsing these sites.

Also, spread the word about congential heart defects.  I know I recently posted about this, but we need more people to be aware.  CHDs are more common than most people realize.  One of every 100 babies born has some sort of a congenital heart defect.  Many are correctable, but many such as Eli and Caleb (and many more I've met along the way) have no fix available.

Eli & Caleb have already beaten some odds just to be here now, however there was a time for each of them when we didn't think they would be alive for their first birthday. Thankfully they are here, but many are not. 

If after keeping them in your prayers and signing up to be an organ donor, you want to do more, please contact me.  My email is jessveale@yahoo.com.  Other ways to help could be buying from the fundraisers organized for them:  "Pray for Caleb" bracelets are $2 and tshirts are $10.  There's a website you could visit to sign up to bring them a meal.  Mostly, the family is asking for prayers.  If you want to follow Caleb's story yourself, you can find their blog listed on the left side of this page. It's titled "Caleb's Heart".

Thank you for reading, thank you for your support, and thank you for your prayers.  You know we cherish them all With Every Little Beat...