Drew is Medicine Free!

I am so happy to share the fact that as of last week, Drew is officially off of all medications. This is the first time since literally the day he was born. I waited a while to share the news because there was a slight chance he might need the lasix and/or spiranolactone again if a certain amount of swelling came back, but so far so good and I am a happy thankful grandma!

My Sweet Little Ava Girl

Hi Everyone,

I am still waiting to see if there are any other grandmas or relatives of children with CHD and/or DiGeorge Syndrome that need to vent or talk or get encouragement from Drew's, hard, but very successful 4 years,but so far, not really. I wonder if I really am the only grandma who felt soooo alone and scared and unable to ever find anyone who really understood. So, I'll keep my blog up for a while longer, just in case. But, in the meantime I have to write about something so I will write about my day today.

My day started with an hour and a half drive to work. It's usually about 45 min., but today there were fires all over the place causing lots of freeway closures. I was proud of myself, though, because of the 5 people who live in Santa Clarita, I was the only one who even went to work today. Hopefully I earned some bonus points that will make up for all those days I took off for Drew's last surgery. And the days I left with no notice when he was hospitalized over the last few years. And those days I took to stay with Drew and Ava while Andrea and Dan went on a little vacation a few months ago. And the days I'm taking in December to go to Disneyland with them. Come to think of it, driving through horrible traffic is a small price to pay for having the freedom to spend time with my grandkids when I need it.

So, today I was at work feeling frustrated and not too happy when Andrea called to check on me because she heard about all the fires. Hearing her voice cheered me up right away, but then she asked Ava if she wanted to say "Hi" to Grandma. Ava grabbed the phone, said "Hi, Grandma" in her adorable little voice and talked to me on and on about how she wanted to talk to me but Drew didn't. Apparently He was busy playing with his Leapfrog. Isn't that cute? Anyway, it was adorable, maybe only in a way a grandma can appreciate.

We're All In This Together

Since starting my blog I have heard from a few grandmas out there that have been through the heartbreak of having to stand by while a child of theirs got the news that their own baby was sick.

They have had to wait and pray and be strong enough to be the mom their child needed while trying not to register their own pain and fear for the little life that they loved more than life itself. They had to witness their own children's heart breaking at the same time that their precious grandchild's hearts were being operated on, more than once.

They experienced joy, relief and happiness unlike anything they ever knew existed. They know they are blessed and they are accepting and loving and thankful and strong. They have educated themselves about the anatomy of the heart. They have learned how to feed their grand babies through a g-tube. They have watched with awe and pride as their young daughters and sons became the best parents in the world and cared for their little heart babies as if they were born to do it. These ladies have not told me their whole stories, just as I haven't revealed all of mine. We are just meeting each other. I think its calming and reassuring for us to know that we aren't alone.

Thank you so much for sharing with me. If anyone would like me to add a link to your grandchild's website, please let me know as I would love to do that.

Anne

Heart Surgery Boys are Good Swimmers...

Well, what a wonderful Labor Day weekend we had! I actually had all of my children, son-in-law and grandchildren under the same roof for a while on Monday. We also had Uncle Tom, Aunt Lisa, Grandma and Grandpa Oddone, and assorted friends under it at the same time too, so very fun, very hectic and very exhausting, but the best kind of exhausting. Thanks, Lisa for all your help! My sweet sister-in-law drove all the way from Pasadena to play with and help take care of the kids on Saturday and then came back again on Monday to visit and help some more. Uncle Tommy was no slacker, either, he went to the beach with us, gave both kids their baths afterwards and even rinsed out Drew's little underwear. He taught both kids to play wheelbarrow. Ava cried when they left Monday night, she loves them so much! Auntie Rachel gets kudos, too. She met us at the beach, basically took over the care of the kids, and barely reacted when Ava had a little accident (the unmentionable kind) on her cute little beach dress.

Drew is doing very well and recovering in mind and body from his last surgery. His stamina and activity level is higher than ever before and its wonderful to behold, although I'm sure the Himmelberger household is going to have some adjustments to make with his new joy of running, hopping, dancing and generally giving his sister a run for her money in the activity arena. He learned to swim right before visiting us and told me that, "Heart surgery boys are good swimmers." He shows his scar to just about anybody that asks to see it or mentions that he is a brave boy. He really seems to wear it as a badge of honor, as he should! I hope that he will always be proud of his scars and all he endured because he indeed is a brave boy.

Another cute story: When we were taking care of Drew and Ava over the weekend I was making sandwiches to take to the beach with us. I had some pepperoni out and both kids kept asking me for it. I gave them each two at a time, thinking it was too spicy for them, but they kept coming back for two more and two more. After a few minutes of this, Drew came up to me and said, "Grandma, come here, I have to show you something." As any good grandma would do, I followed him. He led me into the bedroom where my daughter's fresh water fish tank is and as Ava was dropping in one more piece, he said, "Look, we shared with the fish." They had pulled a chair over to the tank in order to open it and dropped in about 8 pieces of pepperoni and a few chunks of cheese.

Calling all Grandmas with Heart

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.

Drew just had his 3rd open heart surgery at Stanford University. He is 4 years old and doing great after a 6 week hospital stay. His parents, my daughter and son in law, could not be doing a better job raising him and his 2 year old sister. However, I sometimes find that I can't let out my true feelings to them, as they are going through enough of their own fear, conflict, etc.. I try to just listen and offer encouragement but sometimes its hard to know what to say and its hard to keep my own fears, thoughts, etc in all the time. I know they can't possibly feel what I feel, but I bet you can if you're in this situation and I'd love to talk about it. 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 me that have special children of their own.