Friday, December 24, 2010

Merry Christmas and Happy, Healthy New Year

MERRY CHRISTMAS AND HAVE A HAPPY, HEALTHY NEW YEAR!
Yes...I am reusing our Christmas picture.  I love it and we really haven't had a chance to get pictures taken this year.

I wanted to share this great poem from Stephanie.  She is the BEST and can express feelings so much better than I.

Twas the night that you joined us, all eyes were on earth
Waiting with joy, for our sweet child's birth.
The angel's stood ready, for each need and care
But all of them knew that the Lord would be there.

And I did my breathing and daddy was scared
We waited and wondered and hoped we'd prepared.
We knew you were special but so very sick
Yet hope had grown in me with every kick.

Soon it was your time, into this world you came
I heard a soft cry,then I called out your name.
And doctors and surgeons and nurses on call
I looked down upon you, so fragile and small.

And God took your hands while angels stood by
Since I could not hold you they hushed your soft cries.
One small angel looked to the father and smiled
"Can you truly teach hope through such a small child"?

An infant so helpless a baby so new
"Oh please tell me Lord, is this what you will do"?
God looked from the angel to the baby's sweet face
"Through her my young charge, they will learn about grace".

I penned this child's journey quite a long time ago
And through her great courage such true love will grow".
Every hair on her head has been numbered you see.."
It's my hope that through her, they will learn to see me.

Oh my little one with a special heart
Great love will see you through
See look that is your family
They've waited so long for you.

I send you to their waiting arms
For a time we'll be apart
But I'll always be with you
For I live within your heart.

And so we held you in our arms
And we thanked our Lord above
We see in you the miracle
Of His undying love.

So when it's Christmas morning
And I watch my children play
I'll need no great reminders
For I see my gifts each day.

~Stephanie Husted
mom to Braeden, age 6, HLHS

Wednesday, December 22, 2010

Look Mom...No Hands

That's right...she is happily showing off not holding onto the furniture.  My little girl can move around furniture like it is nothing, but this week she has decided to let go.  Not for long and she won't move, but she is letting go.  It makes me so happy...and yet scared as well.  Letting go means almost walking which means eventually she will be free to move around the house...just like the boys.  Independence for my little girl means giving up the control of her surroundings...something I fully admit that I am not good at giving up.  I know...the boys walk and are free through the house.  They get into stuff all the time.  I don't know why Hope doing it is making me so nervous, but it really is scary for me.  She has been my little baby for so long...longer than my boys.  Her being so small also makes a difference...she looks like she is 6 months old.
I will post before Christmas, but I wanted to share the news today!

Tuesday, December 14, 2010

15 Months

Time flies and the days fly by so fast. I can't believe Hope is already 15 months old.  She is changing and learning so much every day.  She has started standing on her own, but only for a few seconds.  I know when she gets comfortable, she will take her first step.  She is talking like crazy...not really understanding too much of what she says, but it sure is cute.  Notice that I did not say how big she is getting.  She seems to have hit a plateau...still trying to get back to 16 pounds.  I really thought she would be in 12 month clothes this winter and I am beginning to think she will wear out the 6-9 month clothes that she has been wearing since summer.  Oh well...I refuse to get worked up about the weight anymore.  She eats good and takes her bottle a few times a day.  She will gain at her own rate and now I get to convince her pediatrician and cardiologist the same thing.

We are still trying to get ready for Christmas.  The tree is up and a few gifts have been bought.  We are planning a big shopping trip for the weekend when my mom can watch the kids.  No Christmas cards this year.  I am hopeful every year that we will get them made, but it hasn't happened since before Paul was born. 

Now to share some great pictures!
Just waiting to see the cell phone bill as she gets older.
Frogger is the greatest cat in the world.  He may look upset, but he loves the attention!
They are always into something.

Monday, November 29, 2010

I Hate These Posts

The hardest posts I have to write are when I find out another person with a Congenital Heart Defect (CHD) has lost his/her fight.  I hate it and I hate that CHDs take the life of anyone.  It is sad and a little more of my heart breaks each and every time. 

Today it is with a VERY heavy heart that I share the passing of Steve Catoe.  He is an adult CHD warrior and the voice of many excellent posts about CHDs and life in general.  I never had the opportunity to meet Steve in person, but learned a lot from him online.  He shared so much of himself through his posts and always shared on Facebook as well.  Steve will be missed by many and their are a lot of tears being shed in the heart world today.  RIP Steve...and give the little CHD angels hugs and kisses from all of us.

Another CHD warrior also earned his wings recently.  Andrew was almost 4 years old and is welcoming Steve to heaven.  It breaks my heart to read through his blog and realize that he was doing so well and yet his CHD took his life.  It scares me all the time and I worry almost daily that something might happen to Hope.  It brings her heart defect to the forefront of my life when another CHD warrior earns his/her wings. 

Please be sure to say a prayer for their friends and families. 

Wednesday, November 24, 2010

Happy Thanksgiving

The thankful and giving season is underway and what a beautiful time of the year it is.  I love this time of year and am so thankful for so much this year and every day.  I am thankful for such a wonderful family and friends.  Real life and online friends have shared so much with our family this year and it has changed my life forever.  I have met so many wonderful families and made great friends and am thankful that when I was lost...so many people rallied around and helped me find the courage and love to endure everything we have been through this past year.

Every year we spend time with our families on Thanksgiving and this year is no different.  We will be going to their houses this year which is different than last year.  Last year Hope had been home from the hospital for only a few weeks and we were not going anywhere.  We had family come over...as long as they were not sick.  We cooked and fed everyone and let family and friends spend time with Hope and our family.  It was a miracle and we wanted to celebrate with everyone.  This year will be great as well because I don't have to cook and we will be able to spend time with family.

We have not started Christmas decorating yet...no time.  I wish I had more time in the day to get done everything I would like, but days are not getting longer so it will wait.  I know we will find the time to decorate and get Christmas together.  Even if we didn't...we still have our family and that makes the holiday season complete.

Happy Thanksgiving to all my friends...I know you have a lot to be thankful for this year!

Monday, November 22, 2010

Hope's First ER Visit and a SPECTACULAR Abstract

Anyone that knows me knows that I am not overly paranoid.  When my kids get a cold, we wait it out.  I don't rush them to the doctor or the emergency room.  To be honest, we have only been to the emergency room one time before and that is when my youngest, Paul, feel and got a huge cut on his forehead...needing 4 stitches.  I just don't like the emergency room and prefer to wait and call the doctor or go in to see her. 

So...for me to take Hope it had to be very concerning...and it was.  She has had a runny nose for a couple days and her voice started getting hoarse.  On Friday she woke from her nap and was just plain cranky.  She was crying and it seemed like she was in a lot of pain.  I checked her temperature...normal.  I listened to her lungs...normal.  I checked her pulse ox...normal (82).  I gave her some tylenol and tried to give her a bottle of Pedisure.  She just wasn't having it or anything else.  I walked my house for about an hour hoping it would calm her down.  Her cry was really hoarse and it scared me.  I thought she might have strep throat.  By this time it was after 5pm and the doctor's office was closed.  So I waited until Jerry got home from work and off Hope and I went to our first ER visit.

Now...our local hospital is affiliated with The Cleveland Clinic, so I was happy and knew they would take good care of us.  We got through check-in (I'm sure that's not what it is really called) and back to a room in a few minutes.  The doctor came in immediately and checked Hope over.  By this time she had eaten 6 Ritz crackers, 1/2 a bottle, and an entire popsicle (they give those out at the hospital).  She was happy, smiling, and back to her 'normal' self...of course!  Her pulse ox was 83 and no temperature.  We went through her symptoms and he checked her ears and her throat.  He called her cardiologist to discuss everything and we were released less than 2 hours after we arrived with a diagnosis...COLD!  No croup, no strep, no heart issues, just a cold.  I am so happy and relieved and kind of feel silly for taking her, but I am glad I did.  I am glad we met the nurses and doctors that were there so they know Hope and hopefully we won't have to see them again through the ER.

Now for the cool abstract that I found:


Congenit Heart Dis. 2010 Sep;5(5):476-481.
Successful Pregnancies in Two Women with Hypoplastic Left Heart Syndrome.

Opotowsky AR, Shellenberger D, Dharan V, Paré E, Norwood WI, Webb GD, Donner R.

Department of Cardiology, Children's Hospital Boston, 300 Longwood Avenue, Bader 209, Boston, MA 02115, USA.

Abstract

Objective.   Hypoplastic left heart syndrome (HLHS) is a relatively common complex congenital heart defect. Prior to development of staged reconstruction (i.e., Norwood procedure), HLHS was almost universally fatal within months of birth. Early survivors of the Norwood procedure are now reaching reproductive age. We report successful pregnancies in two such women. Patients.  The first patient was a 20-year-old woman transferred from a community hospital at 33 3/7 weeks gestation because of preterm labor, suspected preeclampsia, and mild chronic hypoxemia. She had normal systemic ventricular shortening without significant valvar regurgitation but severe neoaortic dilatation. A fetal ultrasound demonstrated intrauterine growth restriction. An urgent Cesarean section was performed at 33 6/7 weeks gestation, given breech position and intractable preterm labor. The second patient, a 23-year-old woman followed at this institution through pregnancy, presented with preterm labor at 36 weeks gestation. Her systemic ventricular shortening was normal, with mild tricuspid regurgitation but without neoaortic dilation or regurgitation. She developed active labor at 36 3/6 weeks, and had a spontaneous vaginal delivery of a small for gestational age infant. Both women tolerated labor and childbirth without complication. Neither infant had evidence of structural heart disease on fetal echocardiography or physical examination. Conclusions.  These cases, the first reported successful pregnancies in mothers with HLHS, highlight the challenges of pregnancy among women with complex congenital heart disease in general and raise several considerations specific to HLHS.

PMID: 21087437 [PubMed - as supplied by publisher]

This is the best article a mom with a HLHS baby girl could ever read.  This is with the medical technology of today...imagine when Hope is 20 and the advancements they will have made!  The tears flowed so much when I read this article.  Even if Hope doesn't want to have children of her own...there is still the possibility and I never knew it was even a possibility before...actually we were told it is/was not possible.  

Monday, November 15, 2010

Let's Help

Everyone who has read my blog knows that I am huge fan of The Children's Heart Foundation.  They use all of the donations to benefit research for congenital heart defects. 

Please...at this time of giving...sponsor Mike in his quest for the 50k race to benefit The Children's Heart Foundation.  You can read Mike's story on his blog.  He is amazing and spends much of his 'spare' time trying to raise awareness and money for congenital heart defects.

It is getting to Thanksgiving and Christmas and this is the season for giving.  Please take the time to donate and support Mike in his quest!

Tuesday, November 9, 2010

Synagis and Updates

She is totally cool!
Hope got her first synagis shot of the season today.  I love that our insurance allows a home health nurse to come and give it to her at our house.  It is so much better than having to go to the doctor's office to get the shot like so many other families.  Hope has gained 2 ounces since the last time she was weighed.  She is still under her 16 pound weight of before, but we'll take the 2 ounces.  I have hope that she will get back some of the weight she lost and gain more.  I have received a lot of great ideas and I thank everyone who gave me the ideas.  I am trying most of the ideas I received and she seems to be happy eating.  She will eat just about anything and it makes things so much easier.  She doesn't eat a lot of anything, but at least she tries it.
You think this might be the cause of the weight loss?  I know Rex sure hasn't lost any weight!
Now to catch up with some friends:
Logan is still in Boston and is on the roller coaster we have all seen happen way too often.  His mom is not updating her blog, but I am following along on facebook.  Please continue to keep all of them in your thoughts and prayers.

Please keep Mia and her family in your prayers.  She had to go to the hospital with an infection.  Hopefully it will be a really short stay.

Also, say a few prayers for Bowen.  He has another infection which looks like it could keep him in the hospital longer.  His parents would love for him to get home soon and I know he would love it as well.

I know I am missing some of my heart friends, so please just say a prayer for all of the babies, children, and their parents and families.

Tuesday, November 2, 2010

OK...Need High Calorie Food Ideas...REALLY BADLY

Hope has managed to lose weight this month.  Almost 1/2 a pound.  She is back in the 15 pound range when she had hit 16 pounds already.  I was totally amazed and very sad this morning when her home health nurse came.  I really need some ideas.  I am doing everything I can think of to get extra calories in her.  I make oatmeal with milk instead of water.  I put butter on just about everything.  She is drinking Pediasure, although not as much as she was formula. 

I am so afraid they are going to want to put an NG back in to get her to gain and I am totally opposed to that idea.  She eats really well and loves food and I think that would be a step backwards.

HELP!!!

Monday, November 1, 2010

Halloween

Last year this was the first 'holiday' Hope was home to celebrate.  She was home to celebrate every single holiday...including each month (other than her 1st month) birthday at home with us.  Here are some great pictures from Halloween this year.
You notice she loves her candy...especially lollipops.  I can't keep them away from her.


All the trick or treaters.  Amanda the Princess, Jerry as Iron Man, Dominic as Gangster Grandma, Hope as a Butterfly, and
Paul as a Frog. 
They only lasted about 45 minutes because it was really cold and I think they were getting bored.  I am happy about that...less candy means less time mommy has to say...no more candy today.

Thursday, October 28, 2010

Looking Back

This is Hope in her car seat on the day we left the hospital.  She weighed 6 pounds and was 17 inches long.  She still fit into newborn clothes and was fed through an NG tube.
I can't believe it was a year ago today that we brought Hope home for the first time.  She was a little over 6 weeks old and had already stayed at two hospitals and had one open heart surgery.  I was so scared to bring her home...especially on NG feeds.  I hated the thought of having to change her NG tube, if and when she pulled it out.  And she did pull it out.  And I did put it back.  And we did get her to eat well enough to take it out for good.  The day we got to take her home was extremely long.  I stayed the night to make sure I was able to take care of her on my own.  I did everything for her and I loved it.  I didn't get any sleep, but I was so awake all day.  The doctors and nurses were convinced we were ready to go home...they just had a TON of paperwork to get through.  Prescriptions had to be filled, car seat had to be tested, NG tube changed, and all the stuff she/we gathered during her stay had to be packed up and taken home.  Boy did she have a lot of stuff.  We brought things almost every day and her room was always decorated and cozy.  It was the same when she got home.  We finally left the hospital at almost 8pm and it was an hour drive.  We still had to get the NG feed stuff set up at home and get her settled into her bed.  It was a rough night, but one I will NEVER forget.  It was the happiest day of my life and I am sure it was for the boys as well.  Their mommy and sister would be there every day and night.

This is my little smiley girl today.  She does move around a little on her horse.  She weighs 16 pounds and is 28 inches.  She has 4 teeth now and can eat just about anything...and does.
I can't believe how far we have come since that day.  Hope is 10 inches longer and 10 pounds heavier...although you would never guess it with as small as she still is.  She is still a little over 16 pounds and still wearing 6-9 month clothes.  I am guessing she will be in them until sometime next year.  It takes a long time for her to gain an ounce...let alone a pound.  She is eating like crazy...anything and everything (and I mean everything).  I have yet to find a food she does not like.  She is still taking a bottle...only now it is
Pediasure.  She likes to eat so much better than taking the bottle.  We try and give her high calorie foods as much as possible.  She is so active all the time that she uses all the calories she takes in.  She is still not walking, but as soon as she feels comfortable enough to let go of the table or whatever she is holding...she will take off and not stop.  I know the boys are looking forward to her walking and they try and 'help' as much as possible.  She is also getting physical therapy and speech therapy.  She babbles like crazy all the time and it is so darn cute.  She loves to smile and it looks like she is going to bite you when she smiles.  It's funny and I think she likes to make people laugh.

Of course she loves to be outside...and especially when she is playing with the boys!
We are so proud of our little girl.  She has gone through so much and is doing so well.  She is our hero!

Sunday, October 24, 2010

Many Prayer Requests

I will update on Hope later this week.  I really want to send out a request to all my followers to send up some prayers for some heart warriors and their parents this week.

Logan is in Boston and will have his bi-directional Glenn on Tuesday.  He and his family live about 10 miles away from me and yet we still have not met.  I really wanted to meet them before he went for his Glenn, but it was a last-minute and emergent need to get him to Boston.  Head over to his blog and let his parents know you are keeping him in your thoughts and prayers.

Dylan is another little man that is getting ready for his Glenn.  I met his mom when Hope was in the hospital for her Glenn and he had just had his Norwood.  Crystal does not have a blog, but Dylan is having his Glenn on Wednesday at the Cleveland Clinic Children's Hospital.

Adam is a little man that is now waiting for a heart.  He has had a rough time and the stress of it all is taking its toll on his mommy.  Her last post is really heartbreaking and I am hoping all my blog friends can head over and give her some kind words and prayers.

Please keep Bowen in your thoughts and prayers as well.  It seems he suffered a stroke sometime in the last week and everyone is trying to figure out how.  The doctors are also trying to figure out some blood sugar issues.  Please send up some prayers for this little guy and his doctors. 

These are my specific prayers.  I know there are more babies, children, and adults out there that need your prayers.  Please keep our heart warriors in your daily thoughts and prayers.  And please don't forget the families of the heart angels...they need your thoughts and prayers too.  Losing your child is something I never want to experience, but many of my fellow heart families have...please keep them in your thoughts and prayers.

Tuesday, October 12, 2010

Heaven Sent

Last week was extremely hard.  So much death and so many sick little kids just took its toll on me.  It was a hard week and it culminated on Thursday with the memorial service for my grandma.  She was 94 years young when she passed away and she had a great life.  She was/is a wonderful woman and a great grandma.  The service was heartwarming and actually kind of fun.  Father Belzak told many stories of spending time with my grandma and the rest of the family and there were tears as well as laughs.

My mom stayed for the weekend, while Jerry and I and the kids made the trip home on Friday.  We had to pick Destiny up for the weekend or we might have stayed another night.  My mom came over last night and brought some stuff back from my grandma.  The one present she brought back was a Christmas present my grandma bought.  The only one she had bought.  It was for Hope.  I cried when my mom gave it to me and I cry every time I see it.  I know it was sent from Heaven and it means so much to me that I can't put my words together very well.
It says "Heavenly angels, sent from above, keep you from harm, wrap you in love."

How could you not cry?

Tuesday, October 5, 2010

Very Sad Today

Today I started the day grieving so many babies, children, and an adult CHDers that lost their battles.  I was and am so heartbroken for these families.  Then, I get a call from my mom.  My grandma has not been doing well for the last week and we kind of knew that her time on earth was not long.  Sadly, in the midst of all the grief for the heart families, my grandma passed away this morning.  I am sad beyond belief.  She is 95 years old and has led a great life.  She taught me the love of travel.  When I was young I used to look through all the magazines she kept on places she had been or planned to go.  Exotic, foreign, and amazing places.  I remember looking at pictures of all the places she visited.  She would always bring us something special from everywhere she went.  I have postcards, dolls, and treasures from all over the world.  I knew when I grew up that I wanted to travel.  And I did...and I will forever.  My grandma taught me to live life to the fullest.  She surely did!  She loved so much and so many people.  I miss my grandma.  Even though she lived a long and full life...it is still hard.

Monday, October 4, 2010

Why?

I know it is not up to us to ask why, but every single time a heart babies earns his/her wings I can't help but ask why.  Why haven't we found a way to stop CHDs from happening?  Why isn't there more awareness and funding for research?  Why does this have to happen to these sweet little babies?  Why????

I wish I had an answer.  I wish I did not have to cry for another CHD baby...EVER!  I wish I didn't have to worry every single day about Hope.  I have become a better person and mom because of Hope, but I wish I had learned to become a better person and mom without having my daughter only have 1/2 a heart.

Please hold your babies and children tight tonight.  Remember to hug them and kiss them and tell them you love them.  Remember to pray for all the heart babies out there...and especially say a prayer for Ewan's family.  They are strong, but prayers always help and give comfort.  I can't imagine (and don't want to imagine) what they are going through right now.  I worry about it in the back of my mind, but it is nothing compared to what they are dealing with today.

So many families this week...Angus, Jessica, Caleb, Ewan, Doug, Kaitlyn, Alexander, Tim....all gone far too soon.  Please send up extra prayers for Doug and his family.  I met them at the Clinic when Hope was there and they are a great family.  Doug will be missed by many and my heart is breaking thinking about what they are going through.

Thursday, September 30, 2010

One Year Ago Today

Every time I have started this post I have spent most of the time crying.  One year ago today I handed my beautiful daughter over to the surgeons to 'fix' her heart.  Just remembering the day of her Norwood scares me and brings up emotions so raw that it is hard to describe.  It is a day that will forever be etched in my mind and one that I remember all the time with mixed emotions.  I remember the feeling of being in PICU while the doctors and nurses were describing everything.  I wasn't really thinking about what was going to happen...I was holding my daughter in my arms and crying like I have never cried before.  I was praying to God like I had never prayed before.  I know people were talking, but I heard nothing...I was lost in a world that belonged to myself, my husband, and Hope.  I told Hope to fight and be strong.  I prayed to God that he would hold Hope in his arms and help her fight through the surgery.  Anyone that has had to hand their little ones over to surgeons knows the emotions I was going through.  They know the feelings...the raw emotion.  If you have not had to do this...I doubt I have described it and all the feelings that goes with it.  It is unreal and something I know I will have to do again...and I hate to think about that at all.
This is what Hope looked like one year ago today.  It is a picture that will forever remain in my head and I hate thinking that any other parent would have to see their sweet little baby so puffy and hooked up to so many machines. 
Hope was in surgery for over 8 hours and the day went by so slowly.  Our family spent the day in the Ronald McDonald room at the Clinic with us.  The boys came up and played and it took my mind off everything for about a second.  The hourly phone calls were heartwrenching.  They told me what was happening with my little girl and as much as I knew it was necessary...I was so scared and worried.  I waited for the calls and then when the phone rang, my stomach would turn and I would feel sick.  The whole day was like that...a few minutes of relief after the call, 50 minutes of worrying, and 5 minutes of being on the phone and hearing what was happening.

It was such a relief when we were able to see her after surgery.  I don't think anything could have really prepared us or our family for what she would look like.  I have seen men cry that I never thought would cry in public.  These are manly men...the ones brought up in an age where men DO NOT cry in public.  Those images will stay with me forever. 



The above pictures are the ones I cherish...Hope growing up.  She is AMAZING!  You would never know by looking at her that she has gone through 2 open heart surgeries and 2 heart caths.  She is and will always be my HERO!

Monday, September 27, 2010

Heart Families

The heart world is big and small.  I found out after Hope was born that there is a whole community of families that have been through what we were starting.  It was a relief and also a very sad lesson to be learned.  I have witnessed much heartache and have celebrated so much in this past year.  I have met families that will remain friends forever because we share a bond in our children.  I have 'met' families and older children/adults that were born with CHDs online that I may never meet in person (although I really, really want to).  Before Hope was born, I lived like so many others...in a world where CHDs were basically unknown or relatively easy to fix.  I have learned more in this year than I did in my 40 years years of living.  I thank those that have come before me...especially the parents that went through this journey when there was no Internet and probably very little support. 

Now, there are a few families that are starting this journey and need your prayers.  Ewan was born on September 18th with Tetralogy of Fallot.  He has been through so much in such a few short days and is now on ECMO.  Please send up prayers for this little guy.  He is doing much better, but could always use the prayers and his parents have some specific prayers on their blog.  Joshua could also use your prayers today.  He is getting ready to head back to the OR for another surgery...this time to either modify or slow his shunt.  His parents are wonderful and have been through so much with Joshua since he was born.  He has HLHS just like Hope and we all know how hard these months are after the Norwood.  Please send up extra prayers for him today.  And a good one...please help Olivia's family celebrate her 6 month birthday.  Olivia has HLHS and I remember the 6 month birthday...what a wonderful feeling and celebration.  Olivia has already had her Norwood and Glenn...all before her 6 month birthday...AMAZING.  Finally, a little closer to home.  Logan was born with Heterotaxy (single ventricle, but a lot more) and he and his family actually live pretty close to us...we will meet in person someday soon.  Logan will be heading to CHOP (Children's Hospital of Philadelphia) pretty soon with his family to have the Glenn and fix some other stuff (see...I don't know a whole lot about this heart stuff).  He has been doing really good at home and getting lots of love from his family and now they are all facing being away from home and Logan having his first open heart surgery.  Please keep them in your thoughts and prayers as they start on yet another journey.

Wednesday, September 22, 2010

Children's Heart Foundation Family Fun Day

The Children's Heart Foundation Family Fun Day was held on September 18th at the Cuyahoga County Fairgrounds from Noon until 5pm.
It was standing room for the Jungle Bob show at Noon.
Jungle Bob brings great animals and puts on a great show.  The kids get to touch and see animals they normally wouldn't have a chance to see.
After Jungle Bob, Joe performed a wonderful magic show for all the kids...and their parents too.
Everyone had a great time on the inflatable's.  We had something for everything...even the older kids enjoyed the human foosball table!
Most kids spent the day on this bouncer and seemed to really love it.
Although...a lot of kids loved being able to race each other through the obstacle course.  We even had some older kids (adults) race each other through the course.
Inside we had a huge table filled with many wonderful donations available for raffle.  We received so many donations and are so thankful to all of the companies for their willingness to donate their wonderful products and services for a great cause.
We also had some local vendors and school systems inside to sell their stuff and to enjoy the day.  They were wonderful and I can't wait to try everything.
Dora and Elmo made an appearance and all the children had a great time.
Buzz visited as well!
The local fire departments sent some trucks up to let the kids take a look around and pose with their fire hats.
Our big surprise was LifeFlight.  We were able to get them to land on the track at the fairgrounds.  Sadly, they were able to land and then got an emergency call, so we were not able to go and check out the helicopter.  I still liked it landing (and knowing it was for the event and not a real emergency).

Monday, September 20, 2010

First Birthday, Cardiology, New Teeth, and 16 Pounds

Hope's first birthday was the best!  We celebrated so many times and so many different ways.  She had a ton of cake and loved ever piece and bite that she had. She got to see friends and family...some she had never even met.  It is a birthday I will never forget.  So many people came to meet/see Hope at the Family Fun Day (fundraiser for The Children's Heart Foundation) and it meant the world to me that I was part of something to help raise money for a great organization.  Having family and friends there made the day all the better!

We had a cardiology visit this past week too.  After a quick weight check (yes...finally 16 pounds!) and a pulse ox of 85, we went for the echo.  Hope hates the echo.  There is no nice way to say it...she hates it.  We have done the sedated echo and while I like it better, I am not sure it is always a good thing to sedate her for an echo and Dr. Prieto doesn't like to sedate either.  So...the echo tech and I get to try and find ways to keep Hope from crying.  It gets hard and she can scream and cry like you wouldn't believe.  People in the waiting room can hear her and I am always afraid that she is going to upset the other patients. 


I have so much to write, but I am going to save my post on The Children's Heart Foundation Family Fun Day for tomorrow.  I have much to share and I can't wait to share all the pictures from our wonderful day!

Tuesday, September 14, 2010

Happy Birthday

WOW!!!  Today my beautiful princess turns one year old.  At 10:01 pm one year ago, Hope came into the world kicking and screaming.  She was and still is the most beautiful baby girl I have ever seen.  It amazes me all that we have been through this year.  We have been through every emotion possible and felt the hand of God so many times over the year.  I wrote the following note to Hope when she was first born and wanted to share it with everyone:

To the most beautiful baby girl,

You are my hero!  I can't begin to tell you how much you have taught me in such a short amount of time.  You have taught me to believe stronger than I have ever believed.  You have shown me God and the miracles He is able to grant.  You have filled my heart with a love so strong I thought I might burst.  You have taught me patience and understanding.  You have shown me how to stop and appreciate every single second of every single minute of every single day.  I definitely don't run through life anymore...I stop and smell the roses all the time. 

I know you will read this and so much more when you get older.  I hope you feel as blessed at your life and everything you have gone through as we feel.  I hope you feel the hand of God and know that He is watching and holding you in His light.  You are a special little girl and you are and always will be MY HERO!

I love you,

Mommy

I hope everyone that reads this will leave a message for Hope.  I plan to print them off and share them with her in her baby book.  I will also be sharing this blog with her when she gets older and I hope she will start one and share her experiences. 

Saturday, September 11, 2010

September 11th



Today is filled with a lot of emotion for a lot of different reasons.  September 11th will probably be a date that everyone remembers for a very long time and it is good to remember historical events and tragedies that have changed lives forever.  In 2001 when the planes flew into the World Trade Center I was in a hotel room in Omaha, Nebraska.  I was a consultant working on a project and I was getting ready to go to work.  When they broke into the regular news with the story I didn't think too much about it.  I didn't think about terrorists or how the world would change.  I thought it was an accident and quickly jumped in the shower.  By the time I got out of the shower...they knew it was an attack. Planes had not only flown into the World Trade Center, they had hit the Pentagon and a field in Pennsylvania.  It was extremely difficult to finish getting ready and head to work.  It was the last place I wanted to be.  I traveled a lot back then and all my friends and family called, sent texts, or emails all day.  I usually didn't travel on Tuesday, so I didn't really think too much about it.  I flew to work on Monday mornings and home on Thursday night.  Surprisingly, I flew home that Thursday.  I was one of 8 people on the flight home...many people didn't think flights would be taking off or landing and many weren't.  I was lucky...I spent the weekend with family.  Although the memories are fading and I don't think about that day nearly as much now as I did back then, it is still an important day and I always take a few minutes out of my day to think about, pray for, and remember the families that lost their loved ones.

Last year on September 11th I was sitting in a hospital room in Akron.  It was so hard to be in a hospital room by myself for so much time to think.  I know I thought about the families that lost their loved ones, but I spent a lot of time thinking about how I would feel if I lost Hope.  I was worried, nervous, and extremely sad.  Being alone in the hospital is very hard for any pregnant woman, but when you are told that your baby might not survive delivery or pass away shortly after...it is unbearable. 



I am so thankful that Hope is here and growing stronger every single day.  She is a miracle and my hero.  I will pray and give thanks for so much today...and say an extra prayer for the families that lost loved ones in a terrible attack.  I hope you will pray and give thanks as well.

Thursday, September 9, 2010

Remembering

A year ago today I was admitted to the hospital with low amniotic fluid.  The funny thing I will always remember is that the ultrasound technician that told me about my low fluid was also the one that delivered the news about Hope's heart and could not find her kidney.  I remember telling her when I saw that she was going to do the ultrasound that I was afraid she was going to find something wrong.  It always seemed like every time something 'bad' was found, she was the one that found it.  I was always so happy when she was not the ultrasound technician.

When I found out my fluid was low, I talked the doctors into letting me go home and spend some time with my family before getting admitted to the hospital.  I cried all the way home.  I wanted to get it out before I got home so that I could spend the time I had with my boys happy...not sad.  We spent the last few hours together having a really nice dinner and telling the boys that I would be in the hospital for a little while.  We really had to scramble because Jerry was still working.  I called my mom and asked if she could take some time off work so Jerry could save his FMLA until after Hope was born.

I find myself thinking back to my pregnancy a lot lately and as hard as it was to hear "your daughter has a problem with her heart", I am blessed every day because of her 'problem'.  I took a lot for granted with my boys and we don't take anything for granted anymore.  We cherish every single minute of every single day with our family.  We truly hope everyone does the same. 

Saturday, September 4, 2010

A Few Updates



It has been a while since I have updated...I have been kind of busy and not much has been going on, so not much to blog about.  Hope and I were supposed to be on a morning show in our area yesterday, but her surgeon had an emergency, so it is being postponed.  We really wanted to spread some awareness and put in a plug for The Children's Heart Foundation Family Fun Day.  Now, we are hoping and working with them to do a show in February for CHD Awareness Week.  I am excited either way because all I really want to do is raise awareness for CHDs.

I am very sad today because I just heard that Andrew Prater (20 year old with HLHS) passed away.  It breaks my heart for his family and what they are going through today.  His mom was able to donate his organs and I know that helps.  She is aware of how much organ donation means to other families and knows that Andrew will live on with some other very happy family.  The tragedy from death to being able to help another family is amazing. 

We are heading to Michigan today for my cousin's wedding reception.  This will be our first overnight trip with Hope and I am excited and kind of nervous.  I am not real sure how well she will do sleeping somewhere other than in her own bed, but we shall see...hopefully it will be better than I am expecting.

I switched out hard drives on my laptop, so I now have to search and find my disk for my camera to upload new pictures.  I will be posting more soon because I have taken a ton and they are sitting on my camera.

This time last year I was counting down the days until Hope was born.  My induction was scheduled for the 21st and I was fairly certain Hope would be born on the 22nd.  I remember my feelings from those last couple of weeks so well and I will be sharing them with all of you in the next few days.  I am amazed at our year and I owe so many people a HUGE THANK YOU for all of the help and support we have received the past year. 

Finally...a plug for The Children's Heart Foundation Family Fun Day.  We are going to have a great time and raise awareness for congenital heart defects and hopefully a lot of money for The Children's Heart Foundation.  I hope anyone in Ohio that can make it does come.  It will be a great time for the whole family and you will be able to meet a lot of children with congenital heart defects and spend time with families that have children with congenital heart defects or that have lost their little ones.  I am already starting to think about next year and I am hoping to get some corporate sponsors and be able to do a lot of stuff for free for all heart kids.  I would love to put something together for all babies, children, and adults that were born with congenital heart defects that live in this area...sort of a reunion/meet and greet.  I know many of the hospitals in other areas do this, but I have not found anything like this in the Cleveland area.  Oh well...I dream really big.

I hope everyone enjoys their Labor Day.  We have a lot going on this weekend, but you all are in my thoughts all the time.

Monday, August 23, 2010

Every Heart has a Story

Every Heart Has a Story

I love this idea of Stef's and even though most everyone knows Hope's story, I thought it would be good to join the blog party and share it here as well.

My husband and I found out Hope would be born with HLHS (hypoplastic left heart syndrome) on May 13, 2009.  It is a day that I will never forget and the scariest day of our lives.  We know when we went for the fetal echo that Hope had a heart problem, but we really figured it was something 'minor' (not that there are really any minor heart defects).  My in-laws have some CHDs...holes and stuff that were fixed.  Never did we think or even know a baby could be born with 1/2 a heart.

We had already named Hope (after Hope Brady from Days of our Lives), but her name truly fit when we found out.  We also found out at that appointment that they were not able to find one of her kidneys.  We spent the next week couple of weeks having appointments and meeting with the surgeon and many other people that would help us through our pregnancy.  It was difficult because we had to make a decision whether to terminate the pregnancy or carry Hope to term and go through with 3 surgeries that may (or may not) save her life.  We did a lot of soul-searching, talking, crying, screaming, laughing, and even more crying and decided to give Hope a chance at life. 

My pregnancy was pretty normal and I have always loved being pregnant.  I would have a ton of appointments and finally got to the point where I made the choice to only go once a month.  My OB wanted to see me more often and have more echos and more ultrasounds, but I found that I was depressed after them, so I decided to try and make it as normal as possible.  That really helped my sanity. 

On September 9th everything changed.  I went in for a regular appointment and an ultrasound to check my fluid.  Low and behold...my fluid was low.  I never had that before and I was scared and so were the doctors.  I was admitted for observation that day and would remain in the hospital until Hope was born.  It was the hardest part of my pregnancy and scared my whole family.  It was also very depressing because I spent the whole day thinking about Hope and worrying about something happening to her.  I can't explain all the feelings I went through from that date until she was born, but it was hard.  I was checked every day to see how much amniotic fluid I had and every day it was fine.  On the morning of the 14th, I told the OB on duty that if it was still at a good level I wanted to go home.  Of course, it had dropped to an unacceptable level and they decided to induce me.  At 3pm, the pitocin started and so did the waiting.  I finally asked for them to break my water at 6pm because the pitocin wasn't doing much at all.  Our families were all there for most of my labor and it was nice to spend time with everyone and not have to wait through the hours by myself.  Of course Jerry was at work and I called him as soon as I found out, but I also knew it would take a couple hours for him to get there.

Hope Jane Wodzisz was born on September 14th at 10:01 pm.  She weight 5 pounds 12 ounces and was 18 1/2 inches long.  Her APGAR was 8 and 9.  She was screaming and kicking and looked so good.  Once she was born, we had them put in her prostin drip in her umbilical cord.  We dressed her up in her Christening gown and the pastor came and Christened her.  Our whole families were there for us and for our daughter.  It was beautiful!  We also had Now I Lay Me Down to Sleep there to photograph everything because we were not sure if she would be born kicking or screaming or not.

Hope was transferred by ambulance to the Children's Hospital at 12:30 that night.  Jerry and I followed in our truck (I was not officially released, but they let me go for a few hours).  Hope was in NICU and looked so cute and so small.  They started her on IVs and made her comfortable.  She took to the binkie almost immediately and looking back...it was the greatest thing they could have done for her.  We got back to the General Hospital around 3am and slept for a few hours.  I forgot to get discharged that morning, so they kept calling over to the Children's Hospital until I went back at 6pm to beg for a discharge.  NICU sent us home at midnight to get some sleep.  It was the hardest thing I have ever done...leave my baby at the hospital and go home. 

Fast forward to September 21st.  Hope was scheduled for her Norwood on the 22nd and the morning of the 21st we met with the other surgeon (ours was at a seminar) as well as nephrology, genetics, and a whole bunch of other people.  It was and will remain one of the worst days of my life.  We were told that because of Hope's kidney problem (I forgot to add...they did find her left kidney...it is small and in a different spot, but God answered a lot of prayers) and the chromosome issue she shares with Jerry (that's another story altogether) they did not feel comfortable doing the surgery.  They told us that if she made it through the surgery, she would probably go into kidney failure.  I don't think many people could imagine how we felt that day.  They basically told us to take our healthy looking daughter who did not need to be intubated yet home to die.  Jerry and I broke down and left the hospital.  We drove home...probably not a good idea...and set about figuring out what to do.  We knew we wanted to give Hope a chance.  I got on the phone and Internet and tried to find someone that would help us.  I found our miracle.  Dr. Mavroudis is from Cleveland Clinic Children's Hospital and it was fate.  His wife's name is Martha (my mom's name is Martha).  His daughter's name is Paula (of course, my name is Paula).  It was destined for us to go to there!

Jerry and I went back to the hospital and put in the request to get Hope's stuff together and the Clinic sent an ambulance for our little girl.  It was too windy for air transport, so Hope went by land.  It was a long drive, but we are so thankful everything happened so quickly and Hope did so well on the ride.  We made it to the Clinic around 11pm and Hope was in PICU.  They sent us home that night and told us to get some sleep and come back in the morning to meet with the whole team of doctors.

We met with everyone the next day and even got to meet Dr. Mavroudis.  Hope's surgery was scheduled for September 30th and Dr. Mavroudis told us that even though she had more medical issues than some hypoplasts, as long as we knew the risks, he was happy to do the surgery.  What a lovely feeling...there was no doubt!

On September 29th, Hope was intubated.  They wanted her to get used to the breathing tube before her surgery.  The following morning Jerry and I cried as we handed Hope over to Dr. Mavroudis.  Our whole family was with us waiting for hourly updates.  It was hard, but we really felt she would do fine.  We spent 10 hours waiting to see Hope.  The updates were pretty good, but we were worried the whole time.  So many feelings and thoughts went through our heads and our hearts were heavy with worry.  At 6pm, we finally got to see Hope.  It was hard...harder than I ever imagined.  She was so swollen and her heart was beating under a piece of tape.  I was able to see her tiny heart beating...the scariest thing I have ever seen. 

The next month was a flurry of activity and I could go on for a long time, but I won't.  Hope was released on October 28th....6 weeks after she was born.  She was released on NG feeds...meaning we had to learn to feed her through a tube (after she had her bottle) and how to change the tube.  It was nerve-racking and hard for me to imagine.  Jerry finally talked me into learning how to do it and then we were able to get released.  What a feeling...HOME! 

The next few months were a whirlwind of activity and appointments.  It was such a wonderful time for our whole family.  The boys loved having Hope and mommy home all the time.  We didn't go out much and it was hard, but we didn't want Hope to get sick.  We even pulled Jerry from preschool to make sure he didn't bring anything home either.  We spent every holiday home together as a family.  It was a dream come true.  Halloween, Thanksgiving, Christmas...all at home with our beautiful children.

February 25th Hope went in for her pre-Glenn catheterization.  It was her first cath and it was just as hard for us to go through as her surgery.  Handing your child over to anyone that is going to intubate them and do anything is amazingly difficult.  It does not get any easier...ever.  Hope had to spend 2 nights at the hospital after her cath because her sats just wouldn't go up.  It was hard and it scared us so much because she was doing so well before it. 

March 8th Hope went in for her Glenn.  Another day that will remain in my memory forever.  We knew our little girl, her personality, her temper, we had her home for so many months.  Handing her over for the Norwood was hard...the Glenn was harder.  I don't know why, but it was.  I broke down and really didn't want to hand her over.  She was so happy when they came to get her that morning.  She was laughing and smiling and looked like she trusted us so much.  It was heartbreaking. 

Hope did great.  They did have to put her back on ECMO a few times because they made her LPA bigger.  It was hard to sit in the waiting room and hear them tell us that they took her off and then put her back on.  Dr. Mavroudis came to see us after the surgery and told us that there were a few minutes in surgery that he was worried...which made me worry too.  She did great though.  She recovered with just a little minor setback.  She was home in 6 days.  Imagine...home 6 days after open heart surgery.  UNBELIEVABLE!

May 13th Hope had a catheterization to balloon her pulmonary artery.  When they made it bigger in surgery it grew some scar tissue.  This happens a lot, but I prayed it would not happen to Hope. 

It is now the 23rd of August and Hope will turn 1 year in a couple of weeks.  She is on a quarter an aspirin a day.  She takes the bottle and loves all kinds of food.  She is crawling and wants to walk.  She pulls herself up, but won't really take a step.  She is smiling and starting to talk and just being a regular 11 month old little girl.  We are so proud and this journey has brought us closer as a family, to God, and to many new heart families!

Saturday, August 14, 2010

11 Months & Fundraiser



WOW...that is all I can say about today.  11 months ago today Hope was born.  I am truly amazed every single minute of every single day.  She brings so much joy to our whole family and everyone that meets here.  She is amazing and so darn cute.  She really wants to walk...I mean really.  She just can't get it coordinated and I am actually kind of happy about that.  She does her modified crawl and if I am not with her every second, she can scoot pretty far.  I just imagine what will happen when she is walking.

This time last year Hope was still inside me and I was waddling to so many appointments.  It was nice and hard at the same time.  It was nice because I love being pregnant.  It may sound strange, but I really enjoyed each of my pregnancies and I would do it again...well, if we didn't already decide that Hope would be our last little bundle of joy and if I wasn't getting so 'old'.

Some other great news I want to share.  Jerry...our 4 year old...won 2nd place in the Kiddie Pedal Tractor Pull at the Cuyahoga County Fair.  We are so proud of him.  He won the cutest trophy and is so proud of it.



I am still working on the fundraiser for The Children's Heart Foundation.  Everything is falling into place and I am getting really excited.  I am hoping we have a wonderful turnout and are able to raise a good amount of money.  I have never done anything like this before and it is kind of fun and exhausting at the same time.  I am overwhelmed by the donations we have received from so many people and businesses.  It amazes me that so many people care so much and are so willing to donate their products and services.  The raffle will be great and if anyone wants to buy tickets, please see the following website.  You do NOT have to be present to win.  We have a lot of great stuff and if nothing else...we have a 50/50 raffle that will surely hit $1,000...hopefully a lot more.

http://www.chfohio.org/CHFOhio/FamilyFunDay.html

A few exciting additions:

Jungle Bob and his Amazing Animal Friends will be putting on a show at Noon
Local Fire Departments will be there for children to see and touch
We have lined up a couple of 'Character' Visits...one of your favorite TV characters may be stopping by to say 'HI' and have pictures
We have Inflatable's lined up...but if anyone has more, we would be happy to receive a donation for their use

I think that is about it for now.  I hope everyone is enjoying their summer.  It is hot and humid, but we have made the most of it...running through the sprinkler and staying in the shade.