Tehilla's Heart Journey

Yesterday, Tehilla had her 6 month cardiology checkup.

"Her heart has never been more perfect."

Tehilla/Emma had a cardiology check-up.

"Perfect heart; perfect kid! Now get out of here!"

Tehilla's results came back negative! Thank God.

Now, she's just milking the rest of this sick day for what it's worth.

Tehilla's fever broke on Friday and she's been feeling all better. We still have no results, so I don't know what to think. 🤷‍♀️

"Well, everything looks excellent. See you in 6 months! Unless you invite me to your Harry Potter party. I'll come dressed as a broom." -Dr. G.

I mean....what is higher than VIP service? Tehilla was given heated echo gel...

We are waiting patiently for Tehilla's cardiology checkup. She's very nervous being back at the hospital and keeps reminding herself, "It's just an echo...just the cold gel..."

...and this is how well she is doing! First day of Grade 2! Thank God for miracles.



*Pssst! Look how pink her lips and cheeks are! 😍

Tehilla waited a week to recover from the heart catheter and not submerge her incision and now she is back in the water!

Her incision sites at the top of her thighs have healed nicely, although she was very sore for the majority of the week.

But look at those rosy cheeks and pink lips!

Dr. G told us that swimming is actually the best sport for post-Fontan kids. It gets the muscles in the chest moving, exercises the lungs and improves general heart health. We didn't need any convincing, but now we have more of a reason to keep going swimming.

Tehilla just got her first Corona vaccine! She was terrified but the biggest love to all the nurses who came to cheer her on, and the sweetest people in the waiting room who offered to help, hold her hand, buy her something- and then made the biggest deal when she did it, giving her superhero names and showering her with love. It's time like this that I remember how much I love the people in this country.

And kudos to the grandpa who helped Tehilla negotiate ice cream and a toy for doing it.

Warning: Mushy-Gushy Post

She crawled into my bed, utilized her elbows and knees to make sure I made room for her, gave me a tired little smile, whispered "I love you", smiled again when she heard me whisper back, "I love you more than you'll ever understand," and let her exhaustion sink in as she relaxed into my pillow.

And I stared at her sleeping face for awhile, appraising those freckled cheeks, noticing a newer shade of pink in them. Looking at her often stubborn and sassy little lips, taking a pinker tone. And listening to the rhythm of her breathing. I whispered "Thank you" to the heavens and let my tears flow freely.

To those who have been keeping up with our heart journey all these years (nearly 8!), you know that the risks and fears that come with her heart condition were sewn into the fabric of her life from day one.

I won't mask the fear and anxiety that kept me awake at night these past few months after watching Tehilla lose more and more energy, bow out of more and more activities, and struggle to do simple endeavors. Some nights I checked on her several times, just to watch her chest rise and fall.

There are no assurances in life, of anything, really. I try to live as much in the present and find the joy. It's not always easy when you watch your child slowly fade. Tonight, I can breathe easier, relax more, and sleep better. And I'll try to let her sleep without kissing her constantly.

We are going home!!!

Dr. Golander came in to say her heart looks fantastic and she's doing great. "Now get out of here! But stay in touch, cuz I like you guys. Oh wait, checkup in a month, so I get to see you then. Bye!"

Tehilla just had a heart echo and was examined by one of the cardiologists. She is recovering very well and they are discussing discharging her today!

Nurse: It's 6:30 am! You are eating sushi first thing???

Tehilla: Uh, yeah. It's sushi!

And yes, that is her Ursula eye mask.

Tehilla is recuperating very well and trying her best to convince the staff to let her have sushi. I believe she will wear them down eventually.

I have so much to say, but before I crash and fall asleep, I want to say thank you to everyone who held us in their hearts and prayed or thought about us. Thank you to the incredible people who helped in every single way.

Tonight, I'm going to sleep breathing easier, knowing my little girl is okay.

*And she just bit into her first piece of sushi that our dear friends sent. Even before I finished posting this...

"Fine...I'll wait until tomorrow for sushi... I know I'm a vegetarian, but I really want a big juicy hamburger right now."

"Let's start with one spoon of jello and see how you're doing."

"This jello tastes like Tylenol. Let's go back to talking about sushi."

The nurses cannot get enough of her.

"I didn't forget about wanting sushi and tell the doctor his mask stinks."

She's out!

And it's good news. As our cardiologist said, "We are happy. You can be happy too."

Her pressures came back fairly good. They were happy with them.

They did not find significant narrowing in her aorta or pulmonary arteries. They found a small kink, that they ballooned, but it instantly went back. They determined for now it is not problematic and that it can be left alone.

They found two small collaterals and determined they were not problematic, so they left them alone.

And then they successfully closed her fenestration!

Her oxygen for the first time in her life is in the 90s!

They did not find a cause related to her heart to explain the exhaustion that she has been experiencing since her specialized stress test.

But she is doing very very well.

Thank God. Over and over and over. ❤

I was just updated. The catheter is going successfully and they are about to finish the diagnostic part. They are trying to decide now about whether to proceed with closing the fenestration and doing any heart repairs.

Please keep holding her in your thoughts and prayers.

Tehilla has been put under anesthesia and they are beginning what should be around a 3 hour procedure.

She was a tough little rockstar, and dictated how she wanted everything to go. God bless the team for rolling with it and letting her have this sense of control. She even held her own anesthesia mask to her face to count down, and then they had to pry her hand open to get her to let go.

The first part of this catheter is diagnostic- they are taking measurements and checking everything from inside her heart.

After that, they will attempt to do a balloon dilation in the narrowed areas of her pulmonary arteries. If need be, they will put in a stent to keep it open.

From there, they will try to close any large problematic collaterals.

After all that, if things are still progressing well, they will attempt to close her fenestration.

Please have Tehilla bat Shoshana in your thoughts and prayers.

We got the call to go to the catheter lab. Tehilla is less than thrilled with the pjs and asked the nurse to put aside red jello for her when she gets back and her fast is over.

This is the face of a very upset heart warrior princess who had blood tests taken, but 2 failed IV inserts and is crazy hungry. She has cocooned up in a sweatshirt and we are watching movies to calm down and distract ourselves.

We are hanging out and waiting for the EMLA (numbing cream) to absorb, so she won't feel the IV that they put in and the blood they draw. She's very scared.

She's also been fasting since 7 am, so she is now listing all the foods she will eat after her heart procedure: ice cream, soup, pizza, sushi, lots and lots of junk food...

Good morning! We are here at the hospital bright and early and Tehilla is feeling anxious. We are finding ways to relax before they start with blood tests.

We met with the cardiology team and our absolute favorite cardiologist, Dr. Golander. Dr. G saw Tehilla's Sally doll and gasped, "Oh my God! I love that movie!" Tehilla said, "You do?!? It's one of my favorite movies of all time!" Thus launched an entire cardiology team + pediatric staff discussion into the merits of the movie.

Dr. G said to Tehilla, "You see, it really is a good movie. And amazing doll!" Tehilla answered him, "Well, I do have very good taste." Then they sat and showed each other pictures of their pets. ❤

While I talked with the team about the catheter, Tehilla sat nearby but out of earshot, coloring. She frequently put her head down to rest and asked a few times to go lay down.

The story is like this: Tehilla's catheter is scheduled for 5:00 pm, so she is the last one and that leaves the team as much time as they need. The first part of the catheter is diagnostic. They will be taking measurements and try to get as much information as possible.

They are hoping to close Tehilla's fenestration, although have concerns over it because she has high blood pressure. As well, they believe she has narrowing in two places. They will try to dilate it with a balloon procedure and if they can't stabilize it, they will put in a stent. Lastly, they believe there are problematic collaterals that need to be closed.

They have concerns going in and as such, our surgeon will be on standby, in case she has to be rushed into surgery. They hope they can solve as many problems as possible, but will assess and prioritize.

They sent us home for the night, but not before they had a colorful discussion with Tehilla about Minions.

On the way home, Tehilla opened up about how stressed she was and we talked it through. I then gave her a second surprise- a Nightmare before Christmas blanket. She squealed so loud, I drove into another lane.

Now we are home, and relaxing. Tehilla needs a rest and I need a nap.

We got our paperwork done, tested her vitals and then went to wait for the doctor to check her. The hospital school invited us for an explanation to prepare Tehilla. Honestly, Tehilla could have prepared them.

It had the opposite intended effect. Kids who have never had serious medical intervention really benefit from the age appropriate explanations and modeling. For Tehilla, she is all too familiar with all of these things. And it ended up triggering her into a panic.

Thankfully, they have a special sensory relaxation room with lights, a water bed, and nature sounds. It instantly helped her.

After an EKG, Tehilla was told she WILL be allowed to sleep at home tonight, so she is very very happy. She was also reassured that she won't get a blood test until tomorrow.

We are waiting for a cardiologist to come check her.

First surprise given to Tehilla to keep her spirits up! One of Tehilla's favorite movies is "Nightmare before Christmas". Mechal and I had Sally delivered in time.

Tehilla: Wow! Awesome! I can creep the nurses out!"

Well, we are all packed and leaving to the hospital now. It wasn't the most restful night, but we are ready.

Thank you so much for organizing meals for us!

Meal Train for The Balofsky Family The Balofsky family just moved to Armon Hanatziv a month or two ago. Their daughter Tehilla was born with hypoplastic left heart syndrome- essentially, half a heart. She is going in next week for a medical procedure for a heart catheterization and the family will need meals for at least a week. If y...