Title and Author Unknown

A friend shared this with me and I wanted to share it here. I am sorry but I don't know the author or title of the piece to give credit.

It can happen during utero,
Or sometime after birth.
The news that makes you tremble,
... The news that shakes the earth.

"we hear a distinct murmur ma'am,
There's an issue with the heart
We're not sure your child's chances ma'am,
It's going to be a rough start"

You think "why me? Why us?"
As you try to choke back tears
Your world crashing around you,
While you're consumed by your worst fears.

That sharp pain in your chest.
The heart break, like a knife.
Watching your precious child
Fight so hard for their life.

The first few months are brutal,
You walk around like a zombie.
Endlessly wondering
"will my baby get to call me mommy?"

"don't worry, it will get better"
Is something you can't stand to hear.
It feels like everything is getting worse!
The end, it feels so near.

Then suddenly the days,
Seem to get a little brighter.
As you stare with loving eyes
At your precious little fighter.

You've never been so proud
Of one single little soul,
Gradually reaching milestones
And accomplishing their goals.

A heart moms journey
Is one that never ends.
Filled with support and compassion,
Of other heart mom friends.

We all love a little deeper,
And care a little more.
Reminding ourselves everyday,
Of how much we can be thankful for.

We were given this life for a reason,
And at times it can get rough.
But we use our kids as examples,
Of how to remain tough.

For us, strength is not a choice.
It's a lifestyle we have to lead.
It's what keeps us going,
And it's what our heart child needs.

June Updates

We had our pediatric cardiologist appt., OB specialist, and OB visit today. It was busy nonetheless. 4 hours worth of updates. The highlights are she is right on track, perfect 32 weeks 3 days. She looks so cute (see photo below). She has been practicing her breathing and they showed us her tummy moving. She also was yawning and rubbing her hands on her face, she may have been avoiding having so many photos. Lol. She is super active and loves to kick! While I have managed to lose a pound (12 lbs total for this pregnancy), we were so pleased that from a month ago she was 2 lbs 13 ounces, now she is 4 ½ lbs!!!  She is growing like a little weed! We need her to gain another 2 ½ lbs in the next 7 weeks.  J No tiny baby here.

We started our birth plan and have set an induction date, she will have her surgery 7 days after delivery. She won’t be able to eat until after her surgery, so it gives me a week to pump some milk so when she is in recovery she can begin to learn to eat through a little tube. Time is flying and soon she will be here! I go back in two weeks to OB and then after that July 5^th and 6^th are our next monumental appts. with a tour of the NICU/PICU and to meet the surgeons, they will also do their final scan of her heart before she is born. I will also see the OB and OB specialist for final planning of birth. We then move on to every week appts until the big day!

This is our quite before the storm.

Lots of love.

My Wish For You...

Dear Ryleigh:
We are in the home stretch now sweet girl, 8 more weeks. I cannot wait to meet you, sing to you, hold you, kiss you, smile with you, laugh with you, and grow with you. You have an amazing little brother who loves to sing to you every night and always hugs you. Your father is a wonderful man who I just know you will have wrapped around your little finger in no time flat. One day your father said to me, “I am not surprised we are having a baby with a heart defect”, at first I was a little taken back, but now I get it, if there were ever a more loving family to care for such a miracle it is us. Our marriage is rock solid, we have enough love to give you and your brother two fold, and you are such a wanted little girl. We also have a lot of good friends and family who can’t wait to snuggle with you. Just know in the next few weeks, we will begin to prepare for an event that will change our lives and know that it is for the better – we are so lucky you are ours. 

I am an avid music lover – I listen to all kinds of music and I have heard this one song in my mind a million times by one of my favorite country bands called Rascal Flatts.  I heard the song today and it made me think of you and all that I wish for your life. I want to share the lyrics and video with you now.

My Wish
Songwriters: Steele, Jeffrey; Robson, Steve;

I hope the days come easy and the moments pass slow
And each road leads you where you want to go
And if you're faced with the choice and you have to choose
I hope you choose the one that means the most to you

And if one door opens to another door closed
I hope you keep on walkin' til you find the window
If it's cold outside, show the world the warmth of your smile
But more than anything, more than anything

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish

I hope you never look back but you never forget
All the ones who love you and the place you left
I hope you always forgive and you never regret
And you help somebody every chance you get

[ From: http://www.elyrics.net/read/r/rascal-flatts-lyrics/my-wish-lyrics.html ]
Oh, you'd find God's grace in every mistake
And always give more than you take
But more than anything, yeah more than anything

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish, yeah yeah

My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold

And while you're out there gettin' where you're gettin' to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish
(My wish for you)

This is my wish
(My wish for you)
I hope you know somebody loves you
(My wish for you)
May all your dreams stay big
(My wish for you)

Here is the video. http://youtu.be/Vyjq5SCbjQk

Mommy loves you so much.

The Broken Heart Art

We went for a mini family vacation this past weekend to New Orleans, where we met our cousin Rebekah and her husband, Michael, to swamp Winston – who is our family dog.  Due to Ryleigh’s condition and upkeep, we felt it best if he went to live with them in San Antonio, which they are avid doggie lovers and were happy to take him. Winston is like a small child, very needy, and with all the Ryleigh will need to it is less complicated, besides we still get to see him.
Anyway, we passed by this local artist in the French Quarter and he was selling rather unique art – which has significant meaning to us. What are the chances, we would be there at the time this artist displayed his art and it mean so much to us? So we bought a piece and here is a photo.

The artist Facebook site is below, contact him if you want your won, he does some neat stuff.

https://www.facebook.com/#!/leveeland

Update: Meeting with Neurologist (5/16)

We met with the Pediatric Neurologist today, Dr. Hector James, at the UF Pediatric Neurology Center in Baptist Hospital and he shared some good news and some so- so news. Susanne Hodge- Mended Littel Hearts Coordinator
904-868-4907 - sairahmom@att.netSusanne Hodge- Mended Littel Hearts Coordinator
904-868-4907 - sairahmom@att.netRyleighjR Ryleigh does have Dandy Walker but only the Variant form not syndrome, if she didn't have the heart condition it would have been of medical insignificance, but because the brain feeds from other organs - her heart condition had an effect on the development of the brain. So what does this mean?  Her condition will likely affect her cognitive abilities, which could mean how she learns, retains, memorizes, etc. but there is no way to determine until she is 5 or so to see how she performs in tasks at school and home.  Her degree of cognitive disability, which could be undetectable, very mild, significant, or severe (if severe we will know sooner as it will affect fine motor skills as well. So really, this is good news because she won't need brain surgery – there is no cure for Dandy Walker Syndrome or Variant, except therapy to improve the disability. Her brain cyst won't ever go away or shrink anymore, but her doctor thinks her condition will be mild whatever that may be.

We have begun testing our 5 ½ year old as well as he has started to display signs of cognitive delays, he started writing words backwards and upside down. He begins his testing May 24^th, oh and that is the other thing, all testing for cognitive disabilities of the brain are non invasive.

Be well!

Cath Lab Tour, Wolfson’s Children’s Hospital

At our last support group meeting (5/15), Mended Little Hearts of Jacksonville, (Susanne Hodge, Coordinator, 904-868-4907, sairahmom@att.net) we did a tour of the cath lab and the different cardiac areas for children to be screened /diagnosed for various CHD’s. It was an amazing experience. Cael also enjoyed it and partook in some of the activities.

3D UltraSound - It is FOR SURE a GIRL.

Well we had our 3D U/S on Saturday and boy oh boy this little lady has a personality. She was fine for the first 20 minutes of probing, but after that she said I am done and flipped to the back, we got several nice shots I think. The place we had our 3D images done, invited us to come back in 2 weeks to see if we can get better shots, so here are some for now and know that more will come. She looks so pretty, Craig is all excited because she has my nose! Lol