SO HAPPY!!!

Mikey had another echo done today. I was so nervous because, honestly, you never REALLY know how he's doing. I can't see his heart beating in his chest so I only know how he SEEMS to be doing. I learned the hard way on one echo when I thought he was doing great but found out that he needed another procedure. Anyway. We got to the hospital at 7:55am and got checked in. They have this awesome ball machine that's HUGE! Mikey loved it.

Here's a good picture just so you can see how big the ball machine is. It's not even all in the picture.

So then we did vitals and checked his pulse ox (95% Way to go kiddo!!) Once all that was done we wen't downstairs and did the echo.

He did so good! Well at least he did up until the end when we ran out of pears and she had the probe up by his neck to get the top of his heart. He was done with it by then and luckily she only had to do two more pictures :)

After the echo was done, we went back upstairs and waited for the doctor. There was a cool wall toy which kept Mikey happy.

We didn't have to wait too long. Dr. D came in and told us some FANTASTIC NEWS!!!! Michael's heart looks about the same maybe even a little bit better! His pressures are just a little higher than a normal person's should be which is FANTASTIC! It means that his ventricle is almost completely relaxed (YAY!!). He still has a little blockage in his valve but Dr. D isn't too worried about it. He said it's very likely the blockage will stay the same and very unlikely that it will get worse. His next echo is in 6 months rather than 4. Dr D said depending on his next echo, we can hopefully "be crazy" and have an echo once a year!!!!!! He's getting better and I am SO HAPPY!! A year ago, great news like this seemed so far away. I am SO PROUD of my son. He has overcome so much and I am so blessed to have him. I love him more than words can describe. Thank you for all your thoughts and prayers. They mean so much to me, my family, and especially Mikey. God bless! <3

Echo Anxiety

Mikey's next echo is in a week and a half and I'm already finding myself anxious to see how his heart is doing. It seems like no time at all passes between his echo's but in the two weeks before each echo, time seems to come to a halt. I'm not sure if I can describe the feelings I get before and during each echo but I'm going to try. Gradually, as his echo gets closer, I get more and more scared. I'm mostly scared of the outcome. Is he getting better or is he getting worse? With a heart baby, there's no telling. There are no symptoms to tell me he's getting better or worse, only an echocardiogram can tell me that. There is a constant fear in the back of my mind. Any time, we could be told that he needs surgery. Any time, he could be taken from us, though the chances of that now are much lower (a small comfort to me). I HATE that my baby boy has to go through all of this. I HATE not knowing if he's getting better or worse. I am optimistic that he is getting better but there is always that "what if" in the back of my mind. What if he isn't getting better? What if something goes seriously wrong and I don't know about it until it's too late? What if he needs more surgery sooner than his doctors expect? What if he doesn't make it through his surgeries?
That last "what if"... I DESPISE that "what if".  I don't like thinking that way. I try not to constantly, but as I've already said, it's always in the back of my mind. Nothing about having a child with a CHD is easy. The constant fear of something going wrong really takes a toll on me. I have faith that God will pull Michael and my family through. He has a plan for Michael.
I try to keep my mind of off the negative "what ifs". There are some positive ones too that I mostly focus on. What if he is getting better? What if his heart relaxes and his ventricle gets bigger? What if he doesn't need ANY more surgery?
No more surgery....... That is the news I'd LOVE to hear one day. Who knows? Maybe that day will be May 1, 2012. Probably not but that's how I like to look at it. "Great news! He doesn't need any more surgery. He's perfect and his heart is perfect." Oh, how I'd love to hear those words! Only time will tell. Until then, it's one day at a time

MICHAEL'S FIRST STEPS!

Finally, at almost 14 months old and TONS of practice, my precious little boy took his first steps by himself. It's hard to believe it. When he was born, I couldn't really think past his heart surgery, recovery, and getting him home. Now, he's over a year old, still crawling, growing so fast, and he's SO close to walking. He took his first steps Thursday (April 19, 2012). I was SO excited! Finally, after everything he's been through, he's going to be walking. I cannot describe how happy and proud I am of my little boy. I love him so much. Here's a video of him walking. We had been practicing so much that he was basically done with it by the time I got this video. 

I LOVE YOU SO MUCH MICHAEL! I AM SOO PROUD OF YOU!!!!

Mikey's First Trip to the Zoo

It was beautiful outside today. What better to do than take the kiddos to the zoo? Alas, we went to the zoo.

My sweet little boys <3

Mikey isn't too sure about this.

Daddy and the boys

I'm not sure he knew what to think through the whole visit.

He liked the parrots...

...and the fish.

I just could not get Mikey to look at the camera.

We had some snacks.

We stayed for a couple of hours. And he still wasn't tired. It was such a fun trip even though most of the exhibits were still closed. A monkey got loose while we were going through the jungle and we got rushed out the door. Luckily, we were basically at the exit anyway. I can't wait to take the kids when Mikey is a little bit bigger. 

While I'm writing a post, I'll add that Mikey is SUPER close to walking!! I don't have a video but I have a picture.

Look at him go!!! I give it another month at the most and I'll have TWO toddlers. Oh boy!

A year ago today...

Michael had his first open heart surgery. A year ago today, he looked like this:

But today, he looks fabulous!! No surgeries any time soon and as strong as ever. A year ago today was the most terrifying day I have ever had. Though my family was there and they did everything they could to lighten the mood and support me, nothing was going to take my mind off of my precious little boy. I'm so proud of everything he has accomplished in the past year and I look forward to many more years to come. 

Michael today:

ONE!

One year ago today, I got induced to give birth to my precious little boy. I didn't know what was in store for me and my family. My perfect baby was born at 4pm and it was magical, love at first sight. February 21, 2011, is a day I will NEVER forget; it is the day our lives changed. Since that day, our lives have been full of ups and downs. Some of the downs: doctor visits, countless echocardiograms, three hospital stays, more pokes and pricks than I can count, a staph infection, and most importantly, SURGERIES. But, now I am done looking at the downs from this past year. Today is a day to CELEBRATE the most perfect blessing God could have given me and all the achievements Michael has accomplished. This year, Michael has not only fought for every day he has but he has also rolled over, sat up on his own, army crawled (so long I started to worry about his development), eventually regular crawled (FINALLY), pulled himself up to standing, walked along furniture and while holding my hands, and learned to say "mama" (his first word) and "dada". You'd never know that my son had such a rough year just by looking at him. He is PERFECT in EVERY way. His perfect little heart beats perfect, washer-sounding beats, and though sometimes his blue color scares me and the fact I can feel his murmur through his chest terrifies me, he's still here. His precious little heart is still beating. He's such a fighter and all the fight he's put into every day is finally paying off. He's getting better and for now, that's all I can ask for.

HAPPY BIRTHDAY MICHAEL!!! I love you more than I could ever put into words. 

What is it like to have a child with a CHD?

Yes, I do realize I have posted 3 things in 2 days, but I was going through some old stuff and found my last two posts. I didn't write these although I certainly wish I did. Enjoy!

You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked...`"What's a CHD?"

I could quote terminology...There's stats that I could give...

But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril...

It's wondering...Lord what's your will?...

......It's monitors and oxygen tanks...

It's a constant reminder...to always give thanks...

It's feeding time, calories, needed weight gain...

It's the drama of eating...and yes it's insane!

It's the first time I held him...(I'd waited so long)

It's knowing that I need...to help him grow strong...

It's making a hospital...home for a while...

It's seeing my reward...in every smile.

It's checking his stats...as the monitors are beeping...

It's knowing that there... is just no time for sleeping...

It's caths, x-ays and boo boos to kiss...

It's normalcy...I sometimes miss...

It's asking...do his lips look blue?

It's cringing inside... at what he's been through.

It's dozens of calls to his pediatrician...

(She knows me by name...I'm a mom on a mission).

It's winters homebound...and hand sanitizer...

It's knowing this journey...has made me much wiser.

It's watching him sleeping...his breathing is steady...

It's surgery day...and I'll never be ready.

It's handing him over...( I'm still not prepared...)

It's knowing that his heart... must be repaired...

It's waiting for news...on that long stressful day...

It's ...praying...it's hoping...that he'll be okay.

It's the wonderful friends... with whom I've connected...

It's the bond that we share...it was so unexpected...

It's that long faded scar... down my child's small chest...

It's touching it gently...and knowing we're blessed...

It's watching him chasing...a small butterfly...

It's the moment I realized...I've stopped asking...why?

It's the snowflakes that fall...on a cold winter's day...

They remind me of those...who aren't with us today