Monday, December 5, 2016

Disability Assessment

Until now, Tehilla has been listed as 100% disabled by Bituach Leumi (Social Security). This has given Tehilla different benefits which ease all of our lives and would greatly benefit her in the future. For the first time, someone somewhere decided that our lives were boring and it would be so much fun to call us in for a "va'adah" (assessment meeting).

When you spend all of your energy focusing your attention on the positive side, on just how wonderful a 3 year old, who has endured as much as Tehilla has, is doing: on her strengths and her miraculous life...it feels pretty nasty to have to go into a meeting and describe how horrible your child is doing. You are asked to focus on all the ways in which your child, in fact, is lagging and not actually keeping up, all of her weaknesses and challenges. This big gray cloud of negativity just hung over Ron's and my head, as we sat and weeded out all of the key points that needed to be made on just how much Tehilla is not excelling.

Today was that meeting and I was very anxious about it. Well, not to fear, they only found possibly the most unfriendly pediatrician to do the assessment. They basically took Oscar the Grouch and just removed all of his feelings. Oh and made him late, so he was intensely impatient. Seriously. Is that where they send doctors after their expiration date?

Well, I did my best, but he really frightened the Mama Bear out of me and it didn't help that Tehilla was hyper and super cute and jumping around. We get the results within the next month, so let's hope that Tehilla's paperwork speaks for itself.

Just another day in our heart journey.

Sunday, December 4, 2016

Heartiversary of Miracles

It was two years ago, leading up to this day, that we were sat down by Tehilla's cardiac team. Her pulmonary arteries were not growing, she was in heart failure, and we had run out of time. She had already been through 2 open heart surgeries and 2 heart catheters. She was overdue for her Glenn surgery by 8 months. But we had run out of time.

It was two years ago, that we were explained that while the chances of success were very low, the only option was to try to do the Glenn surgery while putting a patch on Tehilla's pulmonary arteries. And by the chances of success, what I am actually saying was her chance of survival. We were explained as gently and as sensitively as possible, that Tehilla would not survive the surgery.

It was two years ago, that our sweet doctor sat us down in his office and tried to prepare us for Tehilla's death. He tried in the best way that he could to make sure that we were completely aware of what was more than likely going to happen on December 4, 2014.

It was two years ago, that our loving blog family rallied around us. We begged and pleaded for a miracle. We asked for prayers and Psalms, acts of kindness and baking of challah bread. We asked for a miracle.

It was two years ago, that we dressed in red and drove our precious daughter to the hospital with our fear palpable. We couldn't speak and we were conscious of the effort it took for us to just breath. We smiled for our baby girl and kissed her goodbye. She was taken into surgery and all of our hopes and prayers followed her into that operating room.

We sat quietly for hours, unable to speak, unable to eat, making pleas with G-d. You all sent us pictures of your red clothing and your beautiful challah. Pictures came in from around the world.

Then the updates started coming from the operating room. "Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery has begun and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is progressing and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is progressing and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is progressing and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is completed, she is stable and they are closing up."

"Mrs. Balofsky, this is the surgical nurse from the operating room. They have closed her up and will be bringing her to the PICU. Everything was okay."

We paced the hallways, waiting for the slightest glimpse of our child alive. Unable to believe that we would in fact be seeing her alive. They brought her up through the elevator, and we saw her. Puffy and full of wires with machines beeping. The machines beeping- proving she was alive. Their steady beep is what I hear in my head when I envision her little face being wheeled into the PICU. It took every ounce of control to not jump on that gurney and start kissing those cheeks and stroking those thin locks of blonde hair.

It was two years ago, that our surgeon came out of the PICU, after he supervised Tehilla being adjusted into her room, hooked up and stable, and spoke to us candidly. "She did it. The surgery was a success. There were no problems and things went well."

We had to wait some time for them to fully stabilize her before we were allowed into the room. The restraint to not burst in was excruciating.

Blog family, every moment of Tehilla's life is a miracle. That little blonde haired, blue eyed girl with half a heart is a miracle. But this was the moment that medicine couldn't provide us with hope. This was the day that Tehilla survived the unthinkable. I will never forget the looks on the faces of the entire cardiac team, when they saw her up and about. It was a look of pure awe.

While heariversaries are usually celebrated by the date of the most recent heart surgery, and as you know, that was only this past July- this is our heartiversary of miracles.Thank you, blog family, for always being there for us, throughout the good, the bad, the impossible and the miraculous. Today, I say Psalms 100- Mizmore L'todah- A Psalm of thanksgiving.




Thursday, November 24, 2016

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):



video





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.


Thursday, November 10, 2016

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.

Saturday, October 29, 2016

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.

Wednesday, October 26, 2016

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!"