May 13th

This is the day Hope is scheduled for her heart catheterization to possibly put a stent in her pulmonary artery.  It also marks one year since we found out she would be born with HLHS.  What a difference a year makes.  I just read the first blog posting I created and cannot believe how far we have come since that day.  It makes me sad to think that we actually considered terminating the pregnancy.  It makes me sad to think that the option is available to parents with all the advances that have been made...that I did not know much about at the beginning of our journey.

May 13th is a special day in our lives for so many reasons and knowing Hope will be having another heart catheterization on that day scares me.  I think everyone knows how scared I am anytime Hope has to go in for any procedure.  I don't know why catheterizations scare me so much, but they do.  Open heart surgery scares me more, but I know (or at least pray) that she won't need near as many surgeries as caths.

Our life has been great lately.  We have been spending a lot of time playing outside and when we are inside...everyone seems to be getting along.  I love watching my boys with Hope and how much they try and help her and play with her all the time.  Everyone is getting so big and that kind of means that I am getting older...YUCK.  I am going to start considering it as getting wiser, rather than older.  I don't feel 40 physically, but mentally there are days when I feel a whole lot older.

Thank you all for following along in our journey and keeping our family in your thoughts and prayers.

Behind Your Scar

Sometimes I have those "moments",

When I think...life's just not fair,

Then I think of all you've been through,

And I see the scar you bear.

A faded line right down your chest,

Made with such careful precision,

We wanted you to have a chance,

Could there be any other decision?

And so I trace that "perfect" scar,

Made with the utmost care,

And I realize there is purpose,

Behind this scar you wear.

What have you taught us?

You've taught us how to face a storm,

(Some things are just out of our hands)

Life has no handy guidebook,

(Things don't always go as you've planned)

People come into our lives,

(Sometimes it is just for a season)

But God brings them into our lives,

(And I know that He must have a reason)

Normal, uneventful days,

(The kind that we always hoped for)

These are the days I say, "Wow God",

We just never know what lies in store.

If I can place a feeding tube,

Without even getting distraught,

Perhaps, maybe, I might be...

Much stronger than I thought.

It's okay to be afraid,

And it's alright to cry,

It's okay to feel lost sometimes,

It's even okay to ask...why?

You face life with courage,

(Knowing God set you apart)

Every little thing you do,

You do with all of your heart.

No crystal ball exists for us,

(To see us through each strife)

We only have one wish for you...

An ordinary life.

You've taught us to love one another,

(Helping each other to cope)

You've taught us compassion for others,

You've taught us to never lose hope.

You already have quite a story,

Which you can someday share,

And I can see it's beauty,

Behind that scar you wear.

~written by Stephanie Husted, heart mom to Braeden (HLHS)

7 Months

I am so happy that we are past two of our surgeries and Hope is doing so very well.  She is 7 months old and I think back to when she was born and everyone was so pessimistic about her kidneys.  They have been doing their job so well and hopefully someday she will be able to show everyone that they may be small, but they are two VERY strong kidneys!  We have a cardiology visit today and will find out whether she continues to have narrowing in her pulmonary artery from the scar tissue.  Please keep praying that the scar tissue heals and there is no need for a stent to open up her pulmonary artery.  I know it is a catheterization and not open heart surgery, but it is still scary.

The appointment tomorrow will also confirm my belief that Hope is over 11 pounds (again).  She seems a lot bigger, but we don't have to weigh her anymore, so I don't.  At her last appointment she was 10 pounds 9 ounces, so hopefully in two weeks she should be over 11 pounds.

As you can see from the picture...Hope is loving to stick her tongue out at anyone and everyone.  It is the cutest thing ever and I was finally able to snap a picture.  You also have to check out the pink cheeks...can you believe she might need a catheterization because her pulmonary artery is narrow???  I sure can't believe it!

Our First BIG Trip

As most of you know we have not ventured very far from home since Hope was born.  I did not feel comfortable taking Hope too many places and exposing her to any 'foreign' germs...meaning anything from outside our house.  Well...yesterday we decided to take a little trip.  My mom, the boys, Hope, and I all headed to Michigan to see my grandma.  She is 94 years young and an amazing lady.  I pray I am in as good of health as her when I hit 94.  She looks great and even though she doesn't have the greatest memory (who the heck does anymore), she knew all of us and loved spending time with Hope.  It was an amazing visit and Hope was the life of the assisted living home where my grandma lives.  My Uncle and cousin also stopped by to see Hope...my cousin met her for the first time, but my Uncle had met Hope when she was in the hospital.  I wanted to share some pictures with everyone because I am so proud of how all my little ones did yesterday.  They spent 3 hours in the car, three hours in the assisted living home, and then 3 more hours in the car coming home.  One guy at Tony Packos in Toledo even commented that they were the best-behaved kids he had ever seen in the restaurant...AMAZING!  My kids are far from angels and usually very rambunctious, but yesterday they showed me how well behaved they can be.  I am so PROUD of each of them!

Easter Update

It's been a few days since my last post and I wanted to share our Easter with everyone.  The boys had a great time and got lots of toys and candy from the Easter bunny and their grand parents.  Hope got a few presents as well...a stuffed bunny from the Easter bunny, teething toys, a beautiful plaque, and new socks from my mom and a gorgeous necklace from Jerry's parents.  Everyone had a great time and too much food and candy.

We finally made it to church with Hope.  We have been avoiding all possibilities of catching bugs and that included church.  Hope Church is a new church nearby and I know they have been praying for Hope.  We wanted to attend Easter services and I am so glad we did.  The people are great and the service was wonderful. 

I almost forgot to mention...Hope is sitting up pretty much on her own.  I am afraid to be too far away from her when she is sitting up, but I try to let her practice during the day.  She is growing up so fast and I love every second of it.  

These pictures are when we were on our way to church.  It is probably the only pictures I have of both my boys smiling at the same time when I have a camera in my hand.  They will smile separately, but they never seem to coordinate their smiles for a picture.

Another rarity...a picture of me!  I am always the one behind the camera and besides...I hate having my picture taken. 

Cardiology Visit...Unexpected News

 

Cardiology visits are something we just expect with Hope.  Every few weeks and hopefully moving to every few months, we will be taking Hope to see Dr. Prieto to make sure everything is fine.  We went today and just thought it was a regular echo and check up and that everything would be fine for another month.  Not so much the case.  We knew her pulmonary artery was small and Dr. Mavroudis made it bigger and patched it during her Glenn.  What we didn't know is that the sutures on the patch could create scar tissue and that could make the pulmonary artery small and decrease the blood flow.  What does this mean?  It looks like Hope will be heading back to the cath lab in the next month.  Dr. Prieto will be checking her again in two weeks, but is not real hopeful that it will grow in that time frame and she really needs the blood to flow well to her lungs or it will affect her lungs.  This is scary because she spent two nights in the hospital after her last cath and this time it is not only diagnostic...they will need to either balloon the pulmonary artery or put in a stent.  We talked about both procedures and they both seem equally scary and of course, the cath is no easy procedure either.  I found a good article on stenting:

What is a stent and how is one used?

A stent is a wire metal mesh tube used to prop open an artery during angioplasty. The stent is collapsed to a small diameter and put over a balloon catheter. It's then moved into the area of the blockage. When the balloon is inflated, the stent expands, locks in place and forms a scaffold. This holds the artery open. The stent stays in the artery permanently, holds it open, improves blood flow to the heart muscle and relieves symptoms (usually chest pain). Within a few weeks of the time the stent was placed, the inside lining of the artery (the endothelium) grows over the metal surface of the stent.

There is also the possibility/probability that Hope will need additional caths to increase the size of the stent as she gets older.  Another scary thought and more time in the hospital that we are not looking forward to.

On a happier note...the weather is getting MUCH better.  We are spending more time outside and Hope loves being outside.  She loves to swing and just be outside with the boys.  We are all looking forward to summer and being able to play more outside and spend more time with family and friends.  Summer brings parties and visitors and Hope loves new people.  She doesn't enjoy anyone poking at her, but she loves to smile and 'talk' to new people.