Gratitude, Day 2

In case you missed it, I started a Gratitude picture challenge for the month of November. Every day I have a word, and I need to come up with a idea of a picture of something I'm grateful for. Its a bit tougher than average gratitude challenges. Because it was be so easy to just say "I'm grateful for my husband, my kids, etc" but to show it with pictures based on one word? Its difficult. But at the same time, its nice to be doing what I love in honor of what I'm grateful for!

So the word today is:

Technology.

This was a no-brainer. What one item of technology am I the most grateful for?

I am grateful for the piece of technology that keeps my youngest son alive.What technology could possibly compete with this? It kind of breaks my heart seeing his face like this though, he hates his pacemaker checks.

This is kind of interesting...

I've had this pic for awhile now (ever since Parker decided to free-fall off his dresser on his birthday )but for some reason just haven't put it up. It is an x-ray right after he received his pacemaker. After searching for months online, I yielded no results for "baby pacemaker x-ray". So we went and bought our own. :)

doesn't it look like a little i-pod?

Here it is now. You can see the bump, but his scars are really started to fade. He has three total.

The heart thing

As my little Parker-bean woke up, once again at 12:30, I stopped to ponder some things as I rocked him back to sleep. Granted, he isn't the itty baby he once was. He just turned 14 months old yesterday. But he felt the same, the same smallness and vulnerability he has always had. I found myself burrowing my face into his hair, smelling the yummy baby shampoo and feeling his sweet strands of hair tickling my nose. He was curled up into me as though I was protecting him, and I could feel the slight rise and fall of his chest upon me. And I couldn't help but think of the never-ending thought. The little heart in there that has failed him.

Its incredible to me how much that little heart has changed my life. How many things seem unimportant now. How my once selfish prayers have now turned into pleas, to keep that little heart beating, as well as my Colby's and my husband's hearts beating as well. I've learned how life can change in an instant. How much you can take for granted. How you should say your "I Love You"s often, so that you don't regret it.

We are in the midst of "Congenital Heart Defect (CHD) awareness week". It runs from Feb 7 until (fittingly) the 14, Valentine's Day. I have some pretty unstable emotions about the entire thing. For starters, I know that his little broken heart is a piece of him, one that I love just as wholy as the rest of him. That just because his heart doesn't work normally, doesn't mean he isn't perfect. In my eyes, Parker is who he is supposed to be. But, at the same time, I think of the unmentionable. The feeling of terror I have felt, as all heart mom's do. The initial diagnosis, the unknown. The panic in the middle of the night. The constant and careful watching for signs and symptoms, the waiting until something goes wrong.

Out of every 100 babies born, one has a heart defect. This makes it the most common birth defect. But still, its kind of pushed aside. You get a sympathetic pat and ... thats it. Why? Why don't more people stand up and pay attention? Certain drugs have been shown to increase your odds. But most? Like us, just a bad stroke of luck. Despite all the cases that are reported each year, funding is still so limited. I'm not ungrateful for past discoveries. These helped make pacemakers smaller so that it would fit in my preemie-sized newborn. I guess, I'm just looking for more. More answers. More treatments. More hope.

Part of me has become so jaded. I worry every time I see a pregnant woman. I hold my breath as my friends and family go into their 'big' ultrasounds. They're excited to see boy or girl, but I just hope for healthy. It seems like its a miracle when things go right! That the stars aligned, and out will come a beautiful, healthy little one.

These are definitely late night ramblings, I'm not going to lie. I just watch Parker so closely, and I'm torn. Part of me doesn't want this to affect him. That he doesn't need to tell people, that he can be a normal average boy. But another part of me? I want him to know how awesome and incredible he is. How he is a fighter. How he was born to stand up and stand out. Because of his heart, he is one in a hundred. But to me? He's one in a million.

Parker's the birthday boy!

My itty bitty Parker-bean turned one today! I must admit that its been an emotional time for me. I've been looking back on our year and it almost makes me cry. The past year has brought me more tears and more joy than I could possibly imagine. He has had surgeries, endured feeding tubes, been poked and prodded, and yet has come out of all of it an incredible, happy, healthy baby boy. I used to be so afraid for him, but I'm worrying less and less. He's super resilient and so strong. This little boy doesn't tolerate being pushed around. He sticks up for himself. But he's a lover, not a fighter. He offers the best snuggles I've ever had. He lights up a room just by being in it. He has the best giggles and the silliest expressions. Here's some of the biggest things I've witnessed over the past year.

1- he has HAIR! Not a lot, but he was so bald for so long!

2. I think he realizes that we're rooting for him to be a lefty, so he hasn't picked a hand yet. We watch so closely, but he does things completely evenly, once with his right hand and once with his left.

3- Although we weren't sure how things would play out, he is developmentally right on track. He's walking along furniture, saying a few words, loves to play pat-a-cake, points at everything... he's just absolutely perfect.

4- He is a people person. He loves to hang out with strangers and play with them.... until he sees Mommy. Then he races right to me and cuddles right up.

5. He's gone from the least picky eater in the world to the most picky eater. At 6 months he ate anything we gave him- green olives, salsa, lemons, all baby foods, fruits, veggies, anything we would give him. Now? He loves MEAT. And potatoes. And fruit. But nothing green shall ever enter his mouth. At all.

6. He loves liquid. Give him a full sippy cup and he'll drain it so quickly. But of course, he won't drink a full bottle.

7. We went to the dr today (post forthcoming) and got his weight. On his birthday, he weighs 17 lbs 6 oz fully dressed.

8. He hates stuffed animals. They are a waste of space. But give him Little People or cars and he's in heaven.

9. He's still not sleeping through the night. But he's only waking up once a night! This is huge, he's always been such a horrible sleeper.

10. He adores his big brother. They are often playing alone in Colby's room. When Parker wakes up, Colby runs in and talks and plays with him. They read, they pretend, they drive cars together... The cutest thing is when we go to get them out of the car and they're holding hands. Such awesome brothers!

11. He holds our hearts. He has our entire family wrapped around his little finger. There's always someone to hold him, kiss him, or play with him!

Tough call

I think one of the hardest parts of being a heart mom is the unknown. The second guessing of everything. When he's having a hard day, you don't know if teething, the reflux, or maybe somethings wrong with his heart or pacemaker. Like today. He was absolutely miserable, with a stuffy nose and a low-grade fever. We tried to suck out his nose, which promptly started gushing blood. This isn't the first time it has happened, either. And no matter how many times you google "nosebleed heart block infant dangerous?" you don't get any helpful info. All you can do is watch closely and pray that everything will be okay.

He's had such a rough day, I'm glad its over and the bleeding has stopped and sleep has taken over. Sleep tight bud.

One year

Exactly one year ago today, my husband and I were THRILLED. We were 19 weeks pregnant, and we were finally going to find out if our little one was a boy or a girl. Was it going to be Alyssa, or going to be Parker? I remember seeing our little bean, our little boy as he danced and jumped for the tech. He was NOT shy at all, he wanted it very well known that he was a boy. It was hard to get the other shots because he kept wanting to show us his goods.

And then, just as more an afterthought, she checked his heartbeat. It was one of the last things on her list. Suddenly the joking and the laughing stopped. She got very quiet and kept saying "hmmm." After a few tries she said "well, he's gotta be a calm little guy. This heart rate is a little bit lower than what we're used to seeing, let me call your doctor."

And left two wide-eyed parents in the ultrasound room. We had no idea what was going on, what to expect. Its probably nothing, right? Perhaps he's just sleeping or something.

The tech quietly came back in and tried to reassure us. "Its probably nothing, but your dr wants you to do another ultrasound at the perinatologist, just to double check. They can schedule you in two days, does that work for you?"

I didn't know what to expect. I guess I never did expect what happened. I cried, a lot. I started making a small blanket in case he came really early. In my mind, I was thinking that it was just the beginning of us losing him. That his heart had almost stopped, and he was dying inside of me. Every movement, (or lack thereof) I was analyzing over and over. It was such a long two days until our next ultrasound. I had no idea that the entire pregnancy would be like that!

And now, its been a year. As I was rocking my little guy right before bed, I just had to sit in wonder. This little boy, the one I cried over, yearned for, worried, fretted, sobbed, rejoiced... so perfect. So happy. So normal. Just looking at him, you'd never know that he's kept alive and healthy by a machine. But one thing you'd notice is how loved and adored he is.

Thank heaven for little boys, is right. Thank heaven for my little Parker.

Milestones

Parker rolled over by himself for the first time this week. It surprised both him and me. Colby was a late bloomer as far as rolling and moving. The Occupational Therapist seems to think the pacemaker was bothering his belly, and so he wouldn't be willing to move or push his body up. But now he's getting pretty good at it!

Also we decided to feed him solids, in an attempt to

1- get him to sleep longer and

2- help with his reflux.

He started out wide-eyed, curious as to why we put him in there and were all staring at him.

first taste...

"Whoa... what was that???"

Yeah, I think he liked it...

A lot!

And his other recent milestone, we actually got a laugh out of him! This one is still pretty rare though!

Getting ready for his cardio appointment

Here's a few pics I snapped after his bath. I wanted him to smell good for the cardiologist. He's such a cute little guy!

Parker's Appointment with the Cardiologist

Parker during his EKG. Look, he has more wires than fingers!

Then we had to check his pacemaker. We got the machine all hooked up, and the computer couldn't find a working pacemaker. No matter how we tried, it couldn't read it. I started to get freaked out, but apparently its a different brand than most pacemakers. We had to go with the less common brand because it is the smallest. And our peanut? Yeah, he's small.

The problem with these appointments and a 4 mo old? He kept grabbing the wires...

and eating them. Nom Nom Nom. So Nummy.

Slowly But Surely

Sorry for the blurry picture! This kid never stops moving. But good news! He's getting a little meat on his bones! His "battery pack generator" (as we call it) is getting less and less noticable. His cheeks are chubbier, his fingers are starting to get squishier, and he's even getting a few rolls on those thighs. Here's a picture from two months ago: What little chicken legs!

Just for a little comparison, here's his big brother's legs at 6 weeks, about the same age as Parker in the white onesie:

Speechless

Back in August, I must admit I was an emotional mess. I had known about Parker's condition for 3 weeks. Almost every day I had bad news from doctors. Most healthcare professionals were not giving me much hope. One night after everyone else had gone to bed, I sobbed as I poured my heart out on the internet. I told my story to absolute strangers, in a request for prayers. Parker needed all the prayers he could get. I needed all the prayers I could get. We were pretty sure that Parker was going to be VERY early, and I was so scared. So I told strangers.


One stranger sent me a private message. She makes blankets, adorable flannel ones that she embroiders the edges with names, birthdays, whatever you like. She wanted to send me one for free. For my dear sweet Parker. I was aghast. Do strangers do that? Yes, yes they do. Especially strangers as sweet as Janelle.


I remember getting it in the mail. I pulled the package open and just stared at it. It was so small, but I knew it'd be so big on him. I imagined my itty baby boy using that blanket, I imagined holding him in it and kissing his forehead. And I cried. I started to look forward to meeting him. I couldn't wait to meet my little guy.


I started sleeping with it at night. I wanted it to smell like me, so that if he ended up in a NICU incubator, he'd remember me. More than once I held it tight crying. When I spent 5 days in the hospital? It was in my hospital bag. When Kim Orlandini Photography did my maternity pics in my hospital room? It was there. It was just waiting for him.
The day he was born, they hurried him to the other hospital. That night when I was feeling a bit better, I folded the blanket in my lap and my husband wheeled me down to meet my son. I wrapped it around his little body, the day I had been waiting for.

He used it while meeting grandparents.

He was so tiny.

After heart surgery? Yep, it was there.

As he started getting stronger and more alert? Right by his side.

As we oohed and aahed over every inch of our son, it was there.

And when Colby got to finally meet Parker. Yep, there too.

And then one day at the hosital, we arrived and it was gone. We searched his entire room, the nurse's station, everywhere. Apparently Parker had dirtied it, and without thinking they had put it in the laundry. They had whisked away such a small blanket that had meant so much to me. I was more than a little heartbroken. Grant was MAD. It was crazy. He would inquire about Parker's status, and then immediately inquire if they had found it. They had sent it to Central laundry, that services all the laundry for 5 different hospitals.

We called and they said they couldn't make any promises, but they would keep their eyes open for it. And then, they found it. The only way they could find it? Because his name was embroidered all around it. I'm sure as they were folding it, maybe one of the ladies couldn't help but admire it. Grant immediately went to pick it up. I was so glad to have it back.

Parker using it again, after a long day up at Primary Children's. So nice to have it back!

Well, today I got a wonderful surprise. When my husband brought in the mail, he found a package. I opened it up and pulled this out.

Its a new blanket for Parker, a bigger one to fit my growing baby. It has his full name embroidered along with his birthday. Such fun colors too! I have not spoken to Janelle since receiving the first one. But she thought of me enough to send me this sweet gift for Parker.

I am speechless.

Thank you Janelle. For your kindness and charity. I wish I could fully express how this means to me.

(If you would like to check out Janelle's other blankets, her website is http://nameblankets.webs.com/ . She did not ask me to promote her, but I can't help it. They're beautiful blankets and I am so grateful.)

An Update

I just wanted to give an update on our little guy.

He is two months old now, and still super teeny. He is wearing newborn clothes and barely had made it into size 1 diapers.

We went for his 2 mo appointment this week at the pediatrician, where he got five vaccines. He's been super grumpy from those now, but other than that he's looking fine.

He weighs 8 lb 10 oz and is 21 inches long, making him 1% in both weight and height. He's so little!

Since he passed the swallow study we've been trying to get him to breastfeed (mom's been pumping since he was born) and he is doing great! Its really hard to teach a child to give up the bottle, so he's pretty amazing.

He is not sleeping very much and his acid reflux is getting worse.

He has one more appointment with the occupational therapist, but other than that he is done!

So pretty much, he's just a normal little baby now, just with a battery pack generator. :)

A Poem

The Day I Became A Heart Mother
by Stephanie Husted, a heart mommy to Braeden

One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame?"

I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking

I have loved him for so long.

I will not give up on this child.
I will listen to your advise.
I will give my son any chance
No matter what the price.

I will learn all I need
To help my baby thrive.
I'll even use that feeding tube,
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
As I accept our fate.

When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound,
Tomorrow I will be kinder.

As another Angel earns his wings,
I run to my baby's bed.
I watch him sleep for quite a while,
I bend down and kiss his head.

I cry for the parents whose hearts have broken.
I look to You wondering why?
Oh Lord, I just can't know your ways...
no matter how I try.

And yet, I trust you hold his life,
and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay!"

From pacing the surgical waiting room,
to sitting by his bed.
From wishing for a good nights sleep,
to learning every med.

From wondering, "Will he be alright?"
to watching him reach out his hands.
With every smile my heart just melts,
despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much,
I would face ANY trial.

That scar I trace with my finger
(It's the door to his beautiful heart).
God must have known how much I'd love him
(Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day....
When I became a "Heart Mother."