Grandma's have heart - Starting over

I started my blog a few years ago to offer support to grandparents and relatives of the parents of heart babies. I thought I'd send out an updated version of my first blog, in case there are some families that are new to CHD and or DiGeorge Syndrome. If so, please let me know if there is anything I can do to help, or if just want to vent to someone who will understand.....

Hi, I am hoping there might be a grandma, grandpa, aunt or uncle out there who is living with the reality of a grandchild (niece or nephew) with CHD and wants to talk about it. My little guy was born with interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He is the bravest person I know.

Last June Drew had his 3rd open heart surgery at Stanford University followed by a 6 week hospital stay. He is now 5 years old and just finished his first season of tball and about to start soccer!

When life wasn't as good as it is now and Drew was hospitalized so many times with pneumonia and other issues related to his immune system, I felt so alone in the world. His parents, my daughter and son in law, could not be doing a better job raising him and his 3 year old sister. However, knowing the agony and fear they lived with every day, I tried my best to keep my own anxieties and heartbreak to myself. It can be very hard to be the strong one and to offer encouragement when your own baby is experiencing what no mother should ever have to. I guess you could call it double agony. It is very hard to keep all these feelings inside, while trying to be strong for your own child. there aren't many people who can really identify with what I went through and will always go through to some degree, but I know you can if you're in this situation and I'd love to talk about it to you, if it would help. It is hard to be the mother of a mother with a heart baby. Its hard to see her cry her eyes out over other heart babies that she knows. Its beautiful to see her help them and reach out to them and watch her give them her support, though, and I'm wondering if I can do the same with other moms, dads, and relatives of special children like mine who have special children of their own.

When we hurt the ones we love

Today Drew asked about Faith and why she was still in the hospital. Andrea had to tell him that she wasn't in the hospital but in Heaven now. Drew cried and wanted to know if she was very old. Guess where he got that from? He always asked why our dog, Duke, died and not wanting him to worry about death, I always told him because Duke was very very very very old. Once he asked me if he was going to die and I told him not until he was very very very very old. He asked me if I was very very old and I told him No, you have to be older than Great Grandma to be very very old. No wonder he was shocked that God took his little friend to heaven. I think I made things worse for him and worse for Andrea. How confused he must be and I wonder how he will make sense of it? Its not the same for a child who hasn't spent months in the hospital hurting and sick. I'm so sorry, Drew. I'm so sorry, Andrea. I have let you both down so much.

Another Angel in Heaven

The sweet little angel that we knew as Faith passed away in her mommy's arms today. She fought hard and strong and taught everyone who knew her or of her what love, strength, faith, and spirit really is.

This little sweetheart was born the same time as my grandson, Drew. She was in a little crib in the same unit that he was in recovering after his first surgery. Her family went through the same ups and downs and therapies and milestones and much more than we did. Her mommy and Drew's mommy bonded then and have remained in each others lives as they have in other heart families' lives.

The sorrow I feel for Faith's family and for all of the heart families and DiGeorge families that have to bear this immense loss is unspeakable. I will always KEEP FAITH and if you knew the story of this little girl, you would too!

Have fun with grandma in Heaven, Faith! WE LOVE YOU!!!

Pray for a Miracle, Please

Please pray for Faith. She needs a miracle. http://faithduarte.blogspot.com

Elijah's Legacy

Elijah was a ray of sunshine in the lives of an entire family that didn't even know they needed and craved the warmth until he was born and brightened their lives. DiGeorge Syndrome claimed his sweet little life but his legacy will live on forever and his grammie would like your help. Grammie is fighting for other families that are facing the shock, the questions, the uncertainties of DiGeorge. Please visit her site at http://elijahslegacy.blogspot.com/ and let her know if you have something to add to her ever-growing network of support and educational articles about DiGeorge and please share it with those that may benefit from what she has to share.

Thanks, Grammie, your strength is an inspiration to us all!

Leighton Harper gets a new heart today!

This is a big day for Leighton Harper and his family. He was born on August 27th, 2008 and has spent his whole sweet little life in a hospital room ever since. He has Hypoplastic Left Heart Syndrome. He has had his ups and downs and his loving parents have kept extraordinarly positive during these months and have barely left his side. When they had to, Leighton was left in the care of his grandparents, and of course, the remarkable staff at ACH in Little Rock, Arkansas. As we waits for his new heart to arrive, he is having his aortic arch repaired. Since his arch was so tiny they apparently had no choice but to replace it so that Leighton would not have any blood flow restrictions in his new heart. http://www.caringbridge.org/visit/leightonharper

I'm calling on all grandmas and grandpas, aunts and uncles of heart babies and anyone else reading this blog to please say a special little prayer today for the Harper family... for Leighton's surgery to be a success and for the continued peace and strength his family will need to get through this ordeal.

Thank you from the bottom of my heart.

Anne

So Proud!

Andrea and baby Nurdin

I am so proud of my daughter, Andrea, for how she has reached out and cared, supported and has just been there for other heart moms since Drew's birth. Obviously her road has not been an easy one, and even when it was at its worse, she still found that helping others in her situation helped her, as well. If you click on the title of my blog today, you can go to her site and read back a few blogs to the story of Zumrat and Nurdin, who were flown in from Krygyzstan, because they don't do the type of surgery this sweet 9 month old little baby needed and he would have only survived another six months without it. The Dr. that assisted in Drew's last surgery performed it for them free of charge and an interpreter was even flown in with the mom because she speaks absolutely no English. Imagine the trust this mother had in order to believe that what these people told her about her baby was true and to follow through with such a scary journey. He has never had meds, since they are not available where they live. She doesn't have a phone or electricity and in the winter it gets 40 degrees below zero. Her husband has one outfit that he hangs on a hook every night and puts back on in the morning. They also have a 3 year old daughter. In her village she was told that her sonb would grow out of his obvious problems. Amazing! Anyway, Andrea stayed with them, along with some other wonderful supportive heart moms, throughout the surgery and post op and Zurat has come to love my daughter. I don't blame her! With everything else Andrea does in a day, she makes the time to help this sweet mom feel comfortable and secure and finds such joy in helping others! I only wish that I will have such an opportunity some day.

Nurdin's Mom, Zurat and Andrea. To read more of this story, go to
himmelberger.blogspot.com

Favorite Grandparent Quotes

People have been sending me grandparent quotes since I've been blessed almost five years ago with my first grandchild. I thought I'd list some of my favorites here. Please add yours, I'd love to read them!

Anne

What a bargain grandchildren are! I give them my loose change, and they give me a million dollars' worth of pleasure. ~Gene Perret

A grandmother is a babysitter who watches the kids instead of the television. ~Author Unknown

Grandmother-grandchild relationships are simple. Grandmas are short on criticism and long on love. ~Author Unknown

Nobody can do for little children what grandparents do. Grandparents sort of sprinkle stardust over the lives of little children. ~Alex Haley

Surely, two of the most satisfying experiences in life must be those of being a grandchild or a grandparent. ~Donald A. Norberg

The simplest toy, one which even the youngest child can operate, is called a grandparent. ~Sam Levenson

Grandma always made you feel she had been waiting to see just you all day and now the day was complete.
-- Marcy DeMaree