Wednesday, January 27, 2016

Fighting Gloves On

Today, really took me off guard. When Tehilla was first released from the hospital after her first surgery, I viewed going to the cardiologist as exciting. Granted, at certain points, we were seeing our cardiac team more than once a week with blue episodes and ER runs. But it was comforting to be surrounded by medical attention and exciting because we would hear just how well Tehilla was progressing. Life was all about getting out of interstage and getting to the next surgery. It could have also been a craving for human contact. We were very isolated back then.

But still, after Tehilla had her second surgery, we looked forward to every cardiology visit, longing for the ever evasive Glenn surgery that would bring us some stability.

Then, of course, she finally had her Glenn, at 14 months old. The first few visits were exciting. We liked watching the doctors amazed faces, as they stared at the miracle baby. The one that was not supposed to make it, but was before their eyes, chewing on tea biscuits and with big blue eyes.

After that, cardiology appointments became less exciting. It had nothing to do with our team of amazing doctors and nurses. It was an anxiety that had slowly creeped in. The "what-ifs". She was doing so well, what if...what if they saw something, what if something was wrong...what if.

This blood pressure problem wiggled it's stupid face into our lives and it became a matter of medications. Trials and errors and awful side effects. But surely in Dr. Golander's big bag of medical magic tricks, he would pull out the right one. Right?

So, today, when Dr. Golander's body language spoke miles before his mouth did- when his forehead was creased and he rubbed his head and then crossed his arms, I knew this last magic trick had not worked. But when his words came out and started circling in my head "catheter, narrowing aorta, hypertension", I laughed a really nervous awkward laugh. "Wait, what?" WHAT?!?!?!

I won't pretend that I was okay. I cried. I pulled over to the side of the road as I drove home and cried. I called Ron and told him the news and cried. I reached out to a heart friend and asked for a shoulder to cry on, and I did. E- thank you for letting me fall apart. I ate some chocolate, reapplied my makeup, and then gathered myself together.

And when I was ready, I looked at my phone, and found out that my previous post had been viewed over 1,300 times. It had been shared all over Facebook. People had left the most heartfelt and sweet comments. Your hope and love embraced me.

I posted last week about the pain being all around our heart world. I also mentioned that our home was surrounded by love and hope and how it carries us through. You are carrying us through right now.

So, now I've brushed myself off, washed away the tears, and have got my fighting gloves on. Tehilla's heart warrior cape (the real one) will be coming off of her shelf. We have the greatest support system in our blog family and we will lean on you for your prayers, your acts of kindness, your red shirts, your positive thinking and your hope. So, I suggest you all get your fighting gloves out too.

This miracle heart princess has been through 3 heart surgeries, 3 heart catheters, and one cardiac arrest (during one of the heart catheters). Nothing is going to keep this girl down.

Here is our fiesty heart warrior. Showing it to that spaghetti. No, for real. She is the strongest person I have ever met and she will show this CHD what a fight is.



  2. I've never stop praying till she was born. She is in my refaenu and in my shema' qolenu and in my personal thoughts and prayers. May HaShem listen to our prayer and give her a speedy Refuàh Shelemàh and the sweetest blessings now and throughout every moment of her precious life. Ken yehi ratzon

  3. We love you all and will keep everyone in our prayers!!! You are truly an amazing woman and an inspiration for all!!! With G-d's help, Tehilla is going to be an awesome success story!!! She's a fighter and a winner! Love you!! B"H

  4. they say gd gives us only what we can handle - well after reading your posts I BELIEVE it!! you are one strong heart mama given one strong hearted beautiful little girl. We are all praying for you and know you will fight this battle valiantly!!