Sunday, December 25, 2016

Chanukah Night 1

Chanukah is one of my favorite holidays!

Here we go- Chanukah Night 1!



Thursday, December 22, 2016

Miracles Everywhere



 This journey that we are on fills our life with days of extreme contrasts. There are days that are so normal, so perfectly ordinary, that one could forget. We don't- but we could. Then there are days that we are reminded of how fragile our daughter's life is, and they are anything but ordinary. We often have to go from one adrenaline rushed moment to the next, with often just a few seconds in between.

A great example of this would be last night. Tehilla was all tucked into bed and should have been sleeping. Instead she was reading books and wrapping all of her little dollies in blankets. I was downstairs working, when I heard her little high pitch voice shout down, "Ima, come! Come here, Ima! I don't feel well. My chest hurts." Is bolted the right word? Maybe "ran like a lunatic, taking three stairs at a time" is more precise...

In any event, I achieved a world record of heart palpitations and speed racing and rushed into her room and calmly said, "Your chest hurts? Where? Show me."

To which she pointed to her lower stomach. "Your tummy? That's your tummy. Does your tummy hurt or your chest?"

She giggled and said, "Oh yeah! My tummy. Silly, Lulu. Not my chest! My tummy!"

Breath in. Breath out. Breath in. Breath out. Let heart rate return to normal. Stop mentally preparing a hospital bag. Deep breaths.

"So, your tummy hurts. Is it because you ate your sufganiya (donut) too fast? Or because you took some of Tzviel's candy from his birthday baggy?"

This juxtaposition is our normal and is probably what made me so teary eyed at Tehilla's school Chanukah party. There she was- in her floofy yellow dress that she insists on wearing constantly, with her little black shoes with kitties on them, singing songs with her friends about miracles. Our healthy little miracle singing about miracles.

Thank G-d for our little sweet miracle.






video

Sunday, December 18, 2016

Big Girl Bed

I has to post these pictures immediately. Another incredible milestone for our princess heart warrior.

During the recovery of Tehilla's Fontan surgery, Tehilla would describe how she wanted her room to be decorated. As you can already guess, she asked for pink and sparkly. We have been slowly working on her pink room with one gold polka dotted wall. There are still minor touches to finish- but the biggest change was finally delivered tonight: her big girl bed.

She couldn't fall asleep in anticipation of the bed's arrival. Here she is completely in love with her new bed.

We are so blessed to be at this point. Thank G-d.

Sunday, December 11, 2016

Little Sickie



Sometimes, this is what a sick day looks like. It's not what a sick day used to look like. Nope. A sick day did not have pink tinged skin with rosy cheeks. It did not have beautifully pink hands...And it definitely did not involve being out and about and getting pink ice cream with sprinkles. Heck, we were lucky if we were out of the hospital.

Tehilla had strept last week and now has some kind of weird end of illnesses sickness. Tzviel had it last week (Yes, it's been a blast around here!), so we aren't overly concerned. And since I had some urgent work business, I had no choice but to take this little sickie along. She only threw 6 temper tantrums over pink sunglasses that she wanted, pink boots that didn't exhist, pink ice cream which I allowed because she deserved it, pink sunglasses again, pink sunglasses once more and I don't even know what the last temper tantrum was about.

These should only be my complaints. This is just a reminder of how blessed we truly are. G-d willing, this will pass in a few days. Thank G-d.

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.