Hope - by Stephanie Husted

Running...through my life so grand

No need to stop

Or understand

God is good...life goes well

No need to stop

Until I fell.

And when my life

Came crashing down

Like puzzle pieces

On the ground.

I didn't want

To stop and pray

Or listen to others

That said, "it's okay".

A pat on the back

We're praying for you

We know of the pain

That your going through.

But do you, I wonder?
As I stop and sigh

Do you imagine each day

That your child may die?

Just live for the moment

I say, with a smile

But inside I'm thinking

I'm tired of this trial.

You see tired eyes

And nails unfiled

But I see a mother

Who just wants her child.

Too many angels

Too many tears

Too many memories

That add to my fears.

I've sent many cards

Of caring concern

To parent's now grieving

Lord, help me discern.

Is this your plan?
Can it really be?
Is this your way

To make us all see?

It's not fair! It's not fair!
I just can't stop thinking

With my head above water

I feel myself sinking.

I try to imagine

Not hearing her giggles

Not seeing her smile

Or watching her wiggles.

Is it so very wrong...
That I feel this way?
That I let fear creep in

And steal hope for today?

Should I dream for tomorrow?
Dare I even believe?
That things will be fine

That I'll never grieve.

But what is life

If hope's not a part?
And what is hope?
But a dream in your heart.

I'll hope...believe

I'll dream and pray

For one thing is certain

And that is, "today".

~Stephanie Husted

Since my last post

Hope has been sick with the flu.  I took her to the pediatrician last Tuesday with a fever and after they swabbed her for Strep, they decided to check for the Flu.  Influenza A = Positive!  Yikes...what happened to the flu shot we all got this year?  I don't like taking Hope to the doctor at all...too many bugs.  This time I knew something was wrong because a fever = infection of some sort.  No one else in the house managed to catch it, but Hope is the last one that I wanted to get it.  She has managed to lose 11 ounces, so we are back to 15 pounds.  It was heartbreaking when her home health nurse came this week.  I knew it was going to be bad, but really didn't think it would be that BAD.  It takes her so long to gain an ounce and to know that she lost 11 ounces, I cringe at the thought of how long it will take her to get back to 16 pounds.

So...we have been confined to the house again - well outside too.  I took Jerry out of school and we have avoided everyone.  I know the boys didn't catch it, but I am sure they would carry that virus with them and spread it all over.  I wish other parents would do the same, but I know it is something I will just have to worry about forever.  It did get me approved for home health care every week for the month.  I love our home health nurse...I will have to take her picture next time she is here.  She is wonderful and feels like part of the family.  I am hoping we can keep her until Hope turns 18...she makes me feel so much better when I don't know whether something is wrong or if Hope is doing fine.  She has taught me how to listen to her lungs to make sure she is not congested.  She is just amazing.

Now...onto my second job.  I am working with an adult CHDer to help put together the Congenital Heart Walk in Cleveland.  If you haven't already, please head over to Hope's Heart Warriors and sponsor us for the walk...or better yet, create a team and join us and many other heart families in the walk.

18 Months, Walk, and More

Hope turned 18 months old today...AMAZING!  She is absolutely adorable and her personality is just the cutest ever.  She laughs, smiles, and talks all the time.  I can't understand a word she is saying, but she carries on a conversation.  She is still hanging on to everything when she walks, but I know she will do it on her own sometime soon.  I don't mind because I know life will get that much harder when she is walking on her own and able to get places so much faster.

This past weekend I had the privilege of getting together for lunch with a bunch of heart moms, Hope's dietitian (whom we love and respect and don't know what we would do without her in our lives), and my newest inspiration...Alicia.  Alicia is 31 years old and has HRHS and Heterotaxy.  She is beautiful, funny, smart, and just the nicest person.  She is taking the lead on the CHF/ACHA Congenital Heart Walk in Cleveland and also works at Rainbow Babies and Children's Hospital.  She works with the new Cardiothoracic Aurgeon as well as the Interventionist Cardiologist.  She sees baby hearts all the time...words cannot express how much I respect anyone that is able to do that...especially a CHDer.  She gives me so much hope and inspiration and I am so blessed to know her.

I could go on and on, but I want to spend a few minutes trying to recruit my readers to form a team for the Northern Ohio Congenital Heart Walk.  Our Walk will be taking place on September 17th at Wade Oval Park in University Circle at 11am.  The website is below...please register either for our team or create your own team.  If you are out of the area and would like to sponsor our team...we would love it.  I am so excited to be working on this walk and hope it is a great success.

Our team is Hope's Heart Warriors.

Glenniversary

Today was the day...one year ago.  I had to hand my beautiful daughter over to Dr. Mavroudis once again to work on her little heart.  It is another day I will NEVER forget and always look back on in ways I can't describe.  Hope had been home for almost 5 months before the Glenn.  We got to know our beautiful princess outside of the hospital.  We went through so much before her Norwood and the thought of her Glenn scared me even more.  I spent weeks worrying...since the day we had a date scheduled.  It breaks my heart when I think of everything Hope has been through and the thought of what she will have to endure at least one more time.

Check out the glasses...they are Build A Bear sunglasses that you usually buy for your bear.  I had to buy them for Hope because they fit so well and she looks so darn cute!

Hope's Glenn went pretty well...she was put on bypass 3 times because she had problems coming off.  They had to make her left pulmonary artery bigger.  Her stay was fairly uneventful...although she did develop Pneumothorax when they took out one of her drainage tubes.  They caught it really fast and for that I am grateful.  It did increase her stay in PICU because we were going to be moved to Step Down the next day.  Even with the minor (they seem that way today, but I can assure you that they didn't feel that way a year ago), she was home 5 days after her Glenn.  It was miraculous!  It was so different than the Norwood and I am hoping the Fontan will be a whole lot like the Glenn.

Look at all my cuties.  They are all in Jerry's bed...they all do have their own beds!

It has been a while

and so much has happened in the heart world.  I hate these weeks when heart babies pass away.  It is heartbreaking and also brings out an anger in me that we can't 'fix' all of the babies.  There are some days that my mind works overtime thinking about all the different ways I think we can fix our little ones...technology that does not exist.  I think about how long transplants have been around and it really bothers me that we have not been able to figure out how to keep people from rejecting donated organs.  It seems like it is something we should have figured out by now.  I feel like we should be further along and I often wonder if it is because so few doctors are pioneers the way they used to be.  Do we just have great surgeons, but no one that can think outside the box and figure out a way to actually fix our babies?  Maybe it will be something mechanical, maybe a different surgery, maybe some medicine...something.  I don't know, but I know that babies dying from CHDs is totally unacceptable...babies dying from anything is totally unacceptable!

Onto some other news.  Anyone in the northeast Ohio area is invited to a luncheon with Hope's dietitian.  She will be talking about diet and effect on heart kids of all ages.  She will be answering any question you might have related to food, feeding, etc...She is a wonderful dietitian and we love her...she has given us some brilliant ideas.  She will be meeting any heart family that would like to join us on March 12th and Buca Di Beppo in Strongsville, Ohio at South Park Mall at Noon.  Lunch will be $17 per person.  Children 4-9 are half price and under 3 are free.  Even if you have no questions, please join us to meet other heart parents from the area.

Finally...we have a date!  The Congenital Heart Walk in Cleveland will be help on September 17th at 11:00am at Wade Oval in University Circle.  The website should be up soon and I will be posting a whole lot more information here as we get things rolling.  I am really excited to be helping with this wonderful fundraiser for The Children's Heart Foundation and the Adult Congenital Heart Association.  Both organizations are very near and dear to my heart and our walk will benefit both organizations.  I hope that if you are in the area you will consider walking on Team Hope or forming your own team!  We are looking for a HUGE turnout for this event.  If you know of any company that would like to sponsor the walk, please let me know.  We will provide a LOT of recognition for any corporate sponsor.

I am going to finish this post with some pictures...enjoy.

Yep...baby gate is now up!

It was actually in the 50s...still snow, but warm for Ohio.  Our weather has been crazy cold and snowy this year.

We can't wait for SPRING!