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!

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.

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?

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.

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.