Friday, May 28, 2010

13 Pounds and First Tooth

It does seem like a long time getting here, but Hope has reached 13 pounds.  She looks a lot bigger than 13 pounds to me, but she is growing like crazy so happy days for us.  She went into her Glenn at a little over 12 pounds and I know it set her weight gain back a little bit.  She has been eating great...anything and everything.  She loves to eat with the family and so far...cheese puffs are her very favorite.

Another milestone...her first tooth finally popped through.  It is tiny and hardly noticeable.  I gave her a piece of melon and she was chewing on it like usual.  It fell and when I looked at it I noticed indents on it.  I just knew what that meant...a tooth!  I am now wondering if that is what was making her nose run and the cough.  I just thought it was a cold, but maybe it was a tooth.  I wish I could take a picture and show all of you her little tooth, but it really did just pop through and it is still a sliver...not really the whole tooth.  She loves it though and spends the day rubbing her tongue on it.

She is still babbling all day long and I know that is a prelude to non-stop talking.  She had visits from Help Me Grow last week and did great with the speech therapist and the occupational therapist.  She is pretty much on target for those areas.  Her biggest delay is in her gross motor skills.  I believe some of that may be because I have been so afraid to put her on her tummy.  She cries so hard after just a minute or two and it breaks my heart.  I know it is something she will need to do, so I am working on it every day.  A little bit at a time...definitely not as much as I am sure everyone would like, but I do more and more every day.  I figure she will work her way up to spending minutes on her tummy and hopefully she will be crawling in a few months.

Thursday, May 20, 2010

Seriously? and some updates

OK...the seriously goes out to the comment I saw on the on-line version of the article about Hope that was published in the newspaper.  I know there are insensitive and ignorant people in the world, but here is a comment that was left on the on-line article:

Stow, OH

Posted 12:59 AM, 05/15/2010
The little girl would have been better off aborted that to face a life of heart and kidney problems. Life is hard enough without being born with half a heart.

I am honestly amazed that anyone would leave a comment like that...let alone actually believe it.  I truly hope the person that posted that never has to experience  'true' hardship in their lives. 

Now...for the cool update.  Hope is babbling like crazy.  And the best part...she is saying 'mama' all the time.  My boys said 'dada' constantly when they were young, but it took a long time for them to say 'mama'.  I would have thought I was crazy or imagining it, but everyone has heard her now...even her Speech Therapist.  I am probably the happiest mommy around!

Saturday, May 15, 2010

8 Months, Home, and Ballooning

So much to report today.  Hope turned 8 months old.  This marks yet again another 'holiday' that Hope has been able to spend at home.  We are amazed at Hope and everything she has been through and how much time she has been at home.  She is our miracle and has shown so many people (especially doctors) what a fighter she really is.  The only 'holiday' she spent at the hospital was her 1 month birthday...which fell just a couple weeks after her Norwood. 

So...what happened you ask?  Hope went in for her cath on Thursday morning around 8:30 am.  We talked to everyone prior to her going in and they told us they would be getting access through her neck because they can't get to the pulmonary artery anymore from her groin.  So...of course, I thought that meant not as many pokes.  I was quite mistaken.  They still tried to get access through the groin to monitor the pressures while she was having her cath.  Of course, they can't get access through her groin...the arteries are occluded.  They knew this from the last time she had a cath.  I was kind of surprised that they would try again...especially because it increased the time she was in the cath.  They were still trying when we called at 11:30.  It does drive me a little crazy...actually a lot crazy.  Anyway...they finished her cath and had to balloon her left pulmonary artery.  We kind of knew that going in, but I was still holding out hope that they wouldn't find any narrowing.

Around 2:00 we went back to recovery to see our little princess.  She was giving the nurses hell...of course.  I talked them into giving her some Versed...heavenly medicine that Hope likes so well.  She hates doesn't seem to work as well.  She drank an entire 6 ounce bottle and promptly fell back to sleep.  She was still sleeping when they moved her to step-down.  She got a 'real' room in the step-down pod living for her.  Jerry spent the night with her and I went home to catch up on some sleep.

We brought Hope home on her 8 month birthday!  YEAH!!!  She is doing great and loves being home with all of us.  We know she will be much happier at home and hopefully she won't need any 'intervention' until she is ready for her Fontan.

Wednesday, May 12, 2010

Catheterization and Pulmonary Arteries

Today is the day Hope goes in for her catheterization and a possible stent in her pulmonary artery.  I am scared, nervous, and just plain exhausted thinking about her having another procedure.  I worry about her all the time and especially when she has to have another procedure.  The cath doesn't scare me nearly as much as what could possibly happen or what they could tell us.  I find myself spending far too much time worrying about everything...especially when she looks so good.  It just doesn't make sense to me at all.  Her sats have been staying in the 80s, she looks great (nice and pink), she is gaining weight (like an ounce a day), and she is only on 1/2 an aspirin a day!  I know she has a heart defect, but there are so many times that I forget and then BAM...a cath. just doesn't fit in my world when I see her thriving at home to think that something might be wrong.  I know we are lucky she is doing as good as she is and God has shown us miracle upon miracle.  I thank God every single day for all He has done for our family.  I know I have to believe He will continue to show us his Grace and I know in my heart I shouldn't spend so much energy worrying...but I do.

Please keep Hope in your thoughts and prayers today!

Sunday, May 9, 2010

In the news!

If you have a chance, check out the link to an article that appeared today in the Akron Beacon Journal. Hope made it to the front page of the paper for a special Mother's Day edition.

Hope's Article

More pictures can be seen if you click on the first picture.

I have been through everything and I still cried like crazy when I read this article...the reporter, Cheryl Powell did an excellent job putting our story into words.

Saturday, May 8, 2010

Happy Mother's Day

Mother's Day

This is for the Mother's
Each mother that I've known
Whose greatest hope was someday
To have children of her own. 

For the ones who proudly rocked their dolls
And kissed them each goodnight
This is for the Mother's 
Who were told..."Something's not right".

This is for the mother
Who when faced with such a trial
Sits beside her child's bed
Just praying all the while.

For mom's who learned of patience
In a way that no one should
For mothers who know firsthand
Life isn't always good.

When dreams of all the "oohs" and "ahhs"
As doting friends arrive
Become instead a battle
To help their child thrive.

This is for the mothers
Who refuse to face defeat
Who become their child's advocate
Who teach their child to eat.

Appointments fill their busy lives
It's time to go again
With feeding pumps and specialists
A tank of oxygen.

As people stop to take a look
Just wondering...what's wrong?
I've seen that look, a hundred times
"You must be very strong".

The oohs and ahhs...don't matter...
Now life seems much more clear...
I'm lucky I'm her mother....
I'm blessed that she's still here.

This is for the mother....
Whose shaking hands release...
The child that she loves so much...
(And then she prays for peace)

"We will take good care of her"...
The nurse says carefully....
This mother's thoughts are simple...
"Lord bring her back to me..
Her life no longer in her hands...
She wonders what's in store...
This is for the mother....
Who has walked this road before.

This is for the mother....
Whose worst fear comes to light....
"We're still not certain what went wrong...."
"We'll watch her through the night."

For mother's who sit powerless...
Praying...please let her survive...
For mother's who go on somehow...
When their miracle doesn't arrive.

As some wake up on Mothers day...
To kisses, cards and laughs...
Other's have just memories...
and well worn photographs.

This is for the Mother's....
Who knows that it's a treasure....
To have a a child...
There is no greater pleasure.

For runny eggs and blackened toast....
Arranged upon a tray....
With a bunch of wilted dandelions...
"Mom does it taste okay"?

For every busy restauraunt...
And every crowded mall....
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted