Who Me?

Sorry for the suspense, but this deserved it's own blog post.

An organization has reached out to me and asked that I go on a speaking tour in the UK of universities and speak to their Jewish groups about our familly's journey.

The conversation went something like this:

Him: So, we feel that your story is super inspiring and really illustrates faith in trying times. Would you be interested in speaking on 5 or 6 university campuses about your story?

Me: Um, what?

I gave it some thought and had to really digest the idea. It's amazing. We never set out in any way for any of this to come about. We are just a normal, average family with a pretty miraculous daughter. I never could have believed that any of this would lead here.

But the more I thought about it, the more I felt that Tehilla's success is directly connected to her name. That people would hear about a little girl with half a heart and praise G-d. And that is what this blog has become and that is why I have said yes.

As well, the opportunity to raise more awareness about congenital heart defects is too great to pass up.

So, it's official. In February, I am flying to England for a week to go on a speaking tour!

New Normals for Half a Heart

And yet, another two weeks have gone by without an update. So sorry, blog family! But at least there is a lot to tell!

First, I have been asked several time to post a video of Tehilla, so you can all get a glimpse of her personality. That is much more difficult than it sounds, as she is quite a spunky person, but refuses to allow me to record her. The other day, she insisted on bringing an umbrella to school, despite there not being any rain and burst into a funny version of "Rain Rain Go Away" that she made up on the spot. By the time that I reached for my phone and started recording, it was over and she refused to do it again.

But I searched in my phone and found a video that I took around the holidays. So, here it is (cannot be seen on a phone):

Tehilla had a (very belated) birthday party at school. I made her another Hello Kitty cake and she had a blast with her friends. She came home shrieking the birthday songs the rest of the afternoon, but clearly enjoyed herself. Her teacher sent me over 30 pictures, but I can't share them, because they have other children in them. Here are two, so that you can get a glimpse.

 

 

Her teacher and I have had some very nice conversations about how much Tehilla has come along and how she has had a surge of maturity, development, ability and especially, energy. They see her participating more in the activities and asserting herself better. It's an amazing thing to be having these conversations and knowing that this little heart warrior has come so far.

Here is a picture that they sent me of her completely loving when the zoo extra-activity brought chinchillas to school. They let her hold one and she was incredibly happy. (Much more than when they brought snakes or crickets in other weeks!) 

 

 And, here she is being the spunky, funny little toddler that she is, demanding to go to sleep with a winter hat on.

 

 

 We are all learning to adjust to our new normal. In the past, a stuffy nose would have desaturated her oxygen too much and landed her in the hospital. Now, we can just pull out the humidifier and settle in for a night at home. Tehilla had a bad cough for a few days. Her cough would turn her purple, but instantly her color would go right back. Her teacher even admitted to pulling out the pulse ox, from Tehilla's backpack, and checking her a few times. And while, her numbers would go low, the teacher would check again a few minutes later and they were right back up. (Have I mentioned enough how much I adore Tehilla's teachers?)

Some vaporub on her feet and amazingly enough- she is fine. You all might be reading this and rolling your eyes, but I'm not sure you realize what an absolute miracle this is for her. We are blessed beyond measure each and every day to have calmness and new levels of stability.

I have some other big news to share, but I will make a separate blog post a little later.

Heaps of Energy

I cannot believe that it has been nearly two weeks since I updated our blog family. How has our little heart warrior princess been?

Well, let's see...

She has stolen my makeup and colored on my duvet. Twice. She has destroyed her almost completed newly decorated room. She colored on Mechal's book report that she had worked on all week.

Sigh. But she is healthy. She has more energy than I have ever seen her have.  She gets a little cold and it goes away on its own. She is happy and thriving and just the most perfectly normal and naughty three year old.

Toilet training has gone exceptionally well and she is very proud of herself. All in all, things could not be better.

I tried to get a picture of her but she was too busy jumping on the couch. Yes. That little cute ball of energy has half a heart. Thank G-d.

Adapting to Normal

It took us a few days to wrap our heads around the outcome of our cardiology appointment. We have spent most of the past 3 years waiting for another surgery, or overly observing Tehilla's health and stability. We are amazed and truly dumbfounded by the greatest blessing of Tehilla's health.

I had to explain to her teacher the outcome. She had the happiest smile as I explained Tehilla's stability. Of course, there will always have to be a watchful eye and Tehilla still has mild bradycardia  (low heart rate), but she is doing exceptionally well. Her teacher said, "Wow. Okay. So, what now?" And I responded with, "Potty training?" We shared a meaningful smile knowing that our biggest hurdle right now, was getting this little heart warrior princess properly potty trained.

This is How Happy I am

We are back home and Tehilla fell asleep on the ride home and is now entertained with Peppa Pig.

Our appointment with Dr. Golander went so incredibly well. Tehilla's echo showed that her heart is doing very well. "That is a happy heart!" are the exact words Dr. Golander used. Her heart function looks very good and everything looks very well. So well, in fact, that we are on schedule to close the fenestration of her Fontan in the summer.

During the Fontan surgery a hole or “fenestration” is often made between the Fontan circuit and the right atrium so that if pressures become very high in the Fontan circuit, there is a “pop-off” into the heart. In other words, a hole was made to allow for a more successful surgery. It will be closed during a catheter procedure in the summer. Another milestone that we need to achieve.

Dr. Golander discussed her Holter monitor results. There was a very nice improvement. Instead of her previous mean (average) heart rate being 69, it went up to 87! Her lowest heart rate measured 74 and her highest measured 129! Those are excellent numbers for Tehilla and show a definite improvement. Dr. Golander said that they do not know why this bradycardia episode happened, but very clearly Tehilla's body is repairing itself and SHE DOES NOT NEED A PACEMAKER!!!!!

 He expressed how happy he is with her progress and said, "So happy that I do not need to see her for 6 months and we will repeat the Holter monitor before that appointment." When I asked about her level of stability and if we could fly abroad, he said, "She can go wherever. No restrictions. That is how comfortable I am."

We are overjoyed. I told Tehilla in the car that her heart is doing very well and Dr. Golander said that it is happy. She said, "It's healthy, Ima! I have a healthy heart!"

"That is a Happy Heart!"

"That is a Happy Heart!"

More details to follow.

Nervous Tehilla

Two hours later, our correct paperwork came through.  We are now waiting for our turn and Tehilla is very nervous. So, we played with Snapchat to pass time.

Her vitals were taken and they are the best they have ever been! Her O2 saturation is at 94!!!!! Her heart rate is at 99!!!!!! And her blood pressure was 116/61!!!!

Now we are waiting for her echo and appointment with her cardiologist, Dr. Golander.