What Does it Mean to be a Mother?

I don't remember exactly where I found this, but I'm sure it was on another heart baby's blog during a late night internet session.  Being a mother of a "normal" baby and then a heart baby, this rings so true to me.  I also think instead of mother it could be "parent" because I know Bryan hurts & hopes as much as I do. 

What does it mean to be a mother?

It's that very first moment
He's placed in your arms.
A wrinkled red face,
Filled with so many charms.
You can't help but cry,
(As a new mother knows)
You've been waiting so long,
Just to count all his toes.
Then visitors come,
Bearing gifts that are blue.
They laugh and snap pictures,
Saying, "He looks like you."
And in just a few days,
(Ahh... the joy and the fun)
You'll be on your way home,
With your beautiful son.

What is it like to be a heart mother?
Again, it's that moment,
You hold your child close,
And cry secret tears,
That a heart mother knows.
In just a few days,
Maybe less, maybe more,
You'll be letting him go,
Asking, what lies in store?
And as your child lays,
In a small isolette,
You think to yourself,
I must not get upset.
And as family arrives,
You try hard to stay strong,
But your tired eyes say,
That this all seems so wrong.
You know what is coming,
Though you're still not prepared.
He will leave your safe arms,
To have his heart repaired.

What does it mean to be a mother?
It is nights with no sleep,
It is feedings and spit up,
It is watching him roll,
And then finally sit up.
It is knowing this child,
Depends on you most,
It's those everyday milestones,
in which, you can boast.
And yes... there is crying,
(At times it's quite loud)
But when he says, "Mama"
He makes you so proud.

A heart mother...
Ahh...yes, little rest,
As the monitors beep,
And you begin to question,
Is there such thing as sleep?
You can't go home yet,
And your kids ask each day,
"Will we see you soon, Mommy?
Can you come home and play?"
"Real soon..." you promise,
"Yes...I miss you too",
And then people ask,
"How do you do what you do?"
And you stroke his forehead,
And his fist is unfurled,
And you know for this child,
You would give all the world.

A mother...
Time passes quickly,
Soon he's off to school,
And before you know it,
Hugs just aren't "cool",
He's a teenager now,
With dreams of his own,
And one day it hits you,
My child, has grown.
And though you are proud,
For all he's achieved,
Life passed more quickly,
Than you could have believed.

A heart mother...
You've always strived to live each day,
As if it were the last,
As the mother of a heart child,
You know things can change fast.
You've seen so many familes,
Endure things you can't understand,
And while you trust that God is good,
Sometimes you just don't understand.
But you go on, because you must,
God chose you for him, and no other,
You're stronger that you could imagine,
You have become a heart mother.

Every mother...
And every mother's journey,
Begins on that day when,
She knows with everything she is,
A mother, she has always been.
Crayon marks cover all the walls,
Muddy prints scatter the floor,
Toys and messes everywhere,
And yes... laundry galore.
I must have the best job that there is,
(Despite all the clutter and mess)
My children... they remind me,
Life shouldn't be such a stress.
Each and every day we have,
(To laugh, to hug, to play)
Is a memory I'll always have,
And nothing can take that away.
I wouldn't trade a moment,
Or all that they've taught me to see,
I'm blessed to be a mother,
It's more than I dreamed it could be.


~Stephanie Husted

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...

Christmas in November!

(If you read all of this, you will see one of the funniest pictures ever at the end.  Could you just skip all the text and other pictures and simply go to the end to see the funniest picture?  Sure, but that's not a proper Christmas in November attitude now is it?  Enjoy!)


So. Much. Fun. 

Tonight (well, Friday night because, as usual, it's after midnight by the time I get time to do this!) we took the boys to the French Lick Scenic Railway and rode The Polar Express!  It was fantastic.  Bryan & I have seen the movie a couple times.  Zachary has seen it once but doesn't really remember much about it.  None of us had read the book until the copy I ordered specifically for tonight arrived earlier this week.  We just knew it would be fun.  Both boys like trains.  The story & movie are good.  And who can pass up an opportunity to start "that Christmas feeling" on November 9th? 

Okay, I confess, I've been playing Christmas music for a week now.  At first I told myself it was to help get in the spirit for this event, but in reality I just like Christmas music :)

Through Facebook, I came across the page for the French Lick Scenic Railway a couple weeks ago.  I had heard that all their Polar Express times were sold out, but lucky me!  They had added some that day.  Who cares they were for November 9th?  We still have a rotting jack-o-lantern on our porch, but by golly we bought those tickets and looked forward to it!

Our train was set for departure at 5:30.  Luckily we arrived in plenty of time to get our tickets at will-call, take a few photos, and find our way around without being too early to allow the boys to get bored.  More importantly we had time to use the bathrooms which I must say, in all seriousness, were the nicest port-a-potties I've ever used.  They even had toilet paper in them!  For anyone taking a younger child, be forewarned there are no changing tables!  The 8-10 potties are lined up under a white tent with heaters in it.  There are two hand sanitizer stations before you exit the tent. 

Once my amazement at not being grossed out by the bathrooms ceased, we lined up for the train.  I'll just start the photos here and tell the story through captions.

At least they're both smiling, even if neither is looking at the camera!  And, yes, they're wearing pajamas.  Zachary is wearing slippers but Eli refused to take off his shoes even for his adorable Elmo slippers.  Children are encouraged to wear their pajamas just like the kids in the story.  I kinda wish I had worn mine!

A kind woman offered to take my picture with the boys after I had taken theirs.  Bryan was using the port-o-pot so I gladly accepted her offer.  One shot & she got us all looking at the camera!  I think I'll hire her to follow us around on outings and take photos so I can just enjoy the event.  But then I'd need to hire a hair/make up artist & a stylist and I don't see that fitting into the budget.



The engine of our train.  We were in Car 2.



Bryan and boys just before we boarded.  Eli was enjoying himself but not really sure what was going on. 

Zachary was very excited and kept jumping up & down in his seat.  He said over & over, "Oh boy!  My first train ride!  My very first train ride!!!"

While we waited in line, and old time newspaper boy was roaming around passing out newspapers.  He was very good and had down the whole "Extra! Extra!" thing.  The whole paper was about French Lick, but the front page was news devoted to The Polar Express.  We got Zachary to sit still for about 7.3 seconds by giving him the newspaper. 

He was done with the paper and getting bouncy again.  I loved his excitement though!  Eli picked up on it and it just made the experience more enjoyable.

Just as we were getting ready to pull away, I got them to sit still enough to get this picture.

Then we preoccupied Zachary by letting him use the camera to take our picture.  He's a pretty good photographer!

We're on the move!

In pure awe of the scene rolling past him. 

Eli was dancing to the music that was piped in and enjoyed watching the crowd around us.

The music stopped and you could almost hear a voice reading the story.  When we bought the tickets we were encouraged to bring a copy of the story so we could read along.  The boys love the beautiful artwork in it. 

At one point in the story, chefs come dancing through the train and pass out hot chocolate and cookies to the children riding.  That's exactly what happened on our train.  The hot chocolate was wonderful and the cookies were nice and soft. 

More dancing after the story.  Eli's saying "CHEEEEESSSEEEEE!" for the camera.

Now Z is looking at the camera as Eli is dancing.  I love how his hands disappear in the glow of Christmas lights in this one.

Eli watching the elves (former chefs in a previous picture) dance in the aisle.  They encouraged everyone to dance with them.  We all did, but Zachary wouldn't get into the aisle with them.

Looking out the opposite windows at the North Pole.  The train made a brief stop there to allow a "Special Passenger" to board.

Santa came through our car and stopped to talk to every boy and girl.  If he thought they were good, they received a bell.  In the story, the bell is significant because only those who believe in the magic of Christmas can hear the bell ring.  Our car was full of ringing bells!!!

Zachary was having a blast making his bell ring.  He kept asking questions about if he's been good or not.  Of course we assured him he's been good (it's the truth!) and it just made him ring his bell more!

Eli preferred someone else to ring the bell and he'd try to grab it.

At one point Eli ventured down the aisle to dance.  An elf picked him up and brought him back to us.  He enjoyed the attention (go figure!).

More dancing and singing!

Awesome smiles before our ride was over.

After we left the train, we had more time to explore.  There was another tent with activites.  Inside there were three toy train tables, two tables with coloring pages, crayons and paper to write your letter to Santa (his mailbox was just outside the tent), and one whole wall was a dry erase board where people left messages for Santa, Mrs. Claus and the elves.

Zachary working on his drawing.

Eli was just as serious as Zachary was.  I guess he's a leftie today!

Zachary's finished masterpiece.

Some very serious train play. 

Bryan and the boys as we were leaving.

And now, the grand finale of pictures.  Believe me, this was worth the wait......



Are you ready for it......


You're almost there.....

the Best Santa Photo EVER!!!
We've all seen crying kids on Santa's lap, but I've never seen one where Santa looks like this!
Love the smile on Zachary's face :)

I shake with laughter each time I look at this!  Seriously, he was a good Santa.  Eli liked him at first.  He didn't object when I started to hand him to Santa.  The sad face started right when the photographer raised his camera for the picture.  We had no idea about Santa's face until we went to the viewing area after we exited the train.  Yes, we paid for this picture.  We got the 8x10.  How could we pass it up?  Zachary looks great, I'm so proud of him.  He's been working on overcoming some of his shyness and he did really well.  He didn't hide from Santa, he talked to him, told him two things on his Christmas Wish List and said thank you for the bell, then he didn't object at all to the photo.  Eli on the other hand......Oh well, it's a great story.

The evening was wonderful.  Zachary is ready to go again.  I'm pretty sure Eli would too, at least for the train, the elves and the cookies!  I hate to tell him they're sold out this year.  We're looking forward to watching the movie together.  If you get the chance to do this with your children, grandchildren, nieces, nephews, etc, I highly recommend it. 


"Seeing is believing, but sometimes

the most real things in the world

are the things we can't see."



MERRY (Halloween's-barely-over-Thanksgiving's-less-than-two-weeks-away-and-I'm-playing-Christmas-music) CHRISTMAS!!!!   Thanks for reading!

Eli's Birthday

This was at their birthday party at the end of September.  It's still the only decent picture of him in his Elmo birthday shirt!

Just being silly as he wears Daddy's reflective INDOT hat!

I'm waaaayyyy overdue with this post.  On October 27th, Eli turned two years old. He's kind of a big deal to us :)  Since we'd already had his birthday party in conjunction with Zachary's at the end of September, it was actually a low-key event.  We went to Corydon for the day.  Our brother-in-law has a family member who is starting up a pizza place/brewery on the Square in Corydon.  He had the place open for the day by invitation only.  Okay, we weren't really invited, but my in-laws were and we tagged along.  I don't think Nathan {the owner} minded though!  Especially because we shared our cake.

Corydon was celebrating Halloween with pride!  There was a costume contest on the Square {Alyssa got 3rd in her age group!}  Later there was a parade which took a long time because this is an election year.  One thing I really liked about the parade was they didn't throw the candy and expect the kids to run into the street to gather it up.  If an entry wanted to distribute candy they had people walking along each side of the street who would hand candy to the children.  Much safer :)

The pizza was great.  It's a brick oven pizza joint and if you're in the Corydon area I highly recommend trying Point Blank Pizza & Brewery.  It's scheduled to open to the public the 15th of November.  Zachary was upset when we didn't take him to eat there for supper one night last week.  It's a really neat place.  Maybe me advertising here on the blog makes up for crashing his Investors Only event!

After the parade we went back into the restaurant and Eli opened his gifts.  I don't have a lot of pictures of this because a week before his birthday, the stinker broke our camera.  We used our old one, but it's kinda junky.  We have since gotten a replacement for the broken one, but sadly it was after Eli's birthday.

He & Zachary had a great time playing on the floor with the new truck we got him.  It's a large truck with some sound effects and it hauls four cars.  Zachary had picked out a musical top for him that they both love.  He got a couple other things, but the truck and toy top were his favorites.  We ate Elmo cake that was made and brought by Mamaw Linda and then headed out.  We got home about 10 and we were all hungry again {hadn't eaten since before the parade at 6!} so we went to Taco Bell because Zachary said that's what Eli wanted for his bedtime snack!  We ate our food and watched the end of the Notre Dame football game.  Definitely a fun and interesting day!

I didn't do the questionnaire for Eli like I did with Z.  We'll start that when he's a little older.  For now I'll just include some facts about Eli:

-he's very sweet.  He cuddles a lot, give wonderful hugs and kisses, and just likes to snuggle...if he's not busy playing!

-he loves to play with trucks more than he does dinosaurs.  He will play dinos with Z, and sometimes on his own, but he usually gravitates to a truck or tractor.  He's also starting to take an interest in puzzles.  Books are usually a big hit with him too.  Another fun activity for him lately is getting to "daw!"  He doesn't do it for very long, but he loves to color a picture or freehand/scribble.

-he helps with the laundry.  He likes to help sort the colors, the sheets & towels and the whites.  Often he will identify who the article of clothing belongs to if I hold it up.  He's also very good at helping load the washer {which is really cute because it's a lot taller than him, but he gets the job done!} and loading the dryer as I hand him the wet clothes.

-he's nuts.  He will walk around screaming at the top of his lungs while shaking his head back and forth as fast as he can.  Then as quickly as he started it, he'll stop.

-he loves to make people laugh.  I remember Zachary being a very happy child at this stage, but his laughter had to do with making himself laugh.  Eli looks for something to do to draw the laughter out of others.

-Eli is rather mean.  Some people may be upset with me for saying that, but it is true.  People would rather hear other words than mean, things like "spirited," "boisterous," and "feisty" but those aren't accurate.  He's mean.  Just as he's very sweet, he's mean.  He's constantly hitting his brother.  Eli will tackle Zachary and pin him down while he bounces on him because Zachary is too nice to knock Eli off.  He throws everything {with pretty good aim, just ask Albert!}  He actually looks for the dog so he can throw things directly at him.  He has started pulling hair and trying to bite.  We know he's going to grow out of this {please tell me he will!!!} but I also have fears that he's going to be a combination class clown/bully.  But for every hit, throw, or head butt he gives, he gives even more kisses and hugs.

-he's starting to get really long.  His last appointment he was 33 1/2 inches long and just shy of 25 lbs.  It's getting very hard to find pants for him.  He's been wearing 12 month pants because he has absolutely no butt.  Seriously.  Twelve month clothes barely stay on his non-existent hips but they're becoming highwaters on him.  I'm having better luck putting him into one-piece rompers that look like pajamas so if you see him out and about in one of those, it's my attempt at keeping his legs covered in the cold weather.

-he wears a size 5 toddler shoe, shirts and one-piece outfits are 18-24 month, and pants are 12 month.

Eli is a fun little guy who keeps us busy.  I don't know what we did before he came along.  It saddens me to think how lonely Zachary would be if we hadn't had Eli.  As time goes by I'm beginning to realize just how lucky we are that he made it through those first 10 weeks of life before he was diagnosed and got proper treatment.  Every single day is a gift with both our boys.

~ ~ HAPPY BIRTHDAY, ELI MARK!!!! ~ ~

If you choose to keep reading, I've ended with a list of Eli's vocabulary along with my lame attempt at his pronunciation.   It's much cuter to hear him though :)  I've included the list here because, if you remember from previous posts, this is our family record as well as a way for family & friends to keep up with us. 

Words He Says:
Mommy &/or Momma                                                
Daddy &/or Dada
Bubba   {Zachary}                                                         
Alba   {Albert}
bebe   {baby}                                                                
Mamaw
Papaw                                                                          
uh-huh
uh-uh                                                                           
baw   {ball}
foo-baw   {football}                                                 
Ah-mee   {Amy, for Dr. Amy}
hi                                                                                 
bye
up
nigh-nigh   {night night}
nana   {banana}
nak   {snack}
mok   {milk}
mor   {more}
b   {bear}
dooc   {duck}
mote   {remote}
teet   {treat}
aye   {eye}
bott   {bottle or pacifier}
ip   {dip or chip}
ett   {pet...as in he wants to pet Albert}
bubble
cheese
ack-pac   {backpack}
Mimi   {Mickey Mouse}
Momo   {Elmo}
too-tee   {Cookie}
me
ruck   {truck}
haw   {hot}
der-tee   {dirty}
Pabo   {Pablo, from the Backyardigans}
oot   {out}
cheer   {chair}
eeeees   {please, we don't hear this as often as we'd like!}
daw   {draw}