Heart Buddies

Arianna & Kira

TOF buddies!

I can't tell you how good it felt to hold a baby again. But....I am definitly not ready for another one. I've been having the baby fever lately and after our playdate I decided neither I or Arianna are ready for that. However, it was so nice to sit down with another heart mom and just talk. Someone who truly knows what it feels like to have a heart baby and the every day fears that come along with it.

Speaking of fears....I had the worst experience this morning. I was sleeping peacefully when Robert wakes me up and tells me to check on Arianna cause he doesn't hear her breathing. I panic...shake her twice.....she doesn't move....I immediatly start crying because I think she is dead...Robert sits up....shakes her once and nothing...finally again...and she stirs.

There has been so many heart babies (and non-heart babies) that have passed away recently that I've been a little on edge lately. The slightest things brings me to tears. So this morning was just a little too much for me. I finally fell asleep after Robert calmed me down, but I NEVER want to be woke up like that again.

Something I posted along time ago on Arianna's CaringBridge page but I thought after this mornings experience I would post it again. Most of you have read it but for those who haven't...this gives you a look into our world.

What does it mean to be the parent of a child with a heart defect?

It means going into your baby’s room a dozen times a night just to check and see if he is breathing.

It means standing over the crib and watching for the chest to rise and fall and when you don’t see it move you begin to panic and put your head down close to the baby’s face to try to hear him breathe.

It means that when you don’t see the chest move and you don’t hear the breathing (because your own heart’s beating is drowning out any other sound in the room) you put your finger under the baby’s nose to feel the warm air on your finger - until you wake the baby and he stirs - and you’re thankful so thankful that he’s still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby’s room wondering why he isn’t crying yet?

It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.

It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out. How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.

It means checking his nailbeds against your own to determine how blue he is today.

It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he won’t be warm enough.

It means worrying that even a sniffle could cause an infection that would harm the heart.

It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby’s name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world just to be a parent.

It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby’s life.

It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.

It means your own heart knows a pain no parent should know.

It means feeling weak and helpless and angry and depressed because your child’s fate is out of your hands.

It means feeling strong and determined and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child’s accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

It means we are united by the same feelings.

It means that we all know the mixed up emotions of living with death-but more importantly of living with Life.

It means that even though we are strangers … we are more to each other than friends could ever be.

By Anna Marie Jaworski (1996)