Sunday, June 18, 2017

Threenager

Okay, okay, okay! I'm sorry I haven't updated in 15 days! Does it make it better if I say all is great? If I say that days went by that I forgot that we are a heart family with a kid with a critical CHD, are we good?

Because 2 weeks went by without illness,  without fear or without worry. Tehilla is doing so well that she has taken on a whole new persona...

She is a threenager. She is demanding, outspoken, extremely naughty and fabulous in every way. She causes constant trouble, picks fights and has us wrapped around her finger.

We have also noticed a new side of Tehilla that stunned us.  Ron and I were sitting outside one Shabbat morning, drinking coffee and chatting before shul. Tzviel was sitting between us while we sat on the half wall of our garden. 

Tehilla comes running up, grabs Tzviel's hands and in the sweetest voice says, "Come Tzviel! Come with me!  Come inside with me."

Listening to her angelic voice, he follows her inside. As he walks in, she turns around and runs back and sits in his spot with a devilish smile...

We were completely shocked!

And with that, I leave you to enjoy more calm and peace. Thank g-d!

Saturday, June 3, 2017

Cherry Picking Festival

A part of Shavuot was spent worrying about Tehilla's health as she once again developed a runny nose and a very bad cough.  The past few months have been cough after cough. While her oxygen levels have been great, she has been having a hard time handling the constant respiratory troubles.

So Friday was one of those times when we focused on living in the present and loving family time. We let our kids miss school and we headed out early to the Cherry Picking Festival in Gush Etzion.

We had a great time picnicking, getting cotton candy, exploring the booths set up, and picking cherries. Despite getting there early, we had a hard time finding cherries. We searched and searched and finally made our way to the complete end of the orchard where we were rewarded with plentiful trees.

We had a blast and enjoying eating the picked cherries on Shabbat. We again were given the chance to examine our blessings and appreciate time together as a family.

Tuesday, May 30, 2017

Happy Shavuot!

Thank g-d, Tehilla has been doing very well. Rambunctious and trying her luck at bending all of the rules.

Her latest obsession is Frozen and ballet. She keeps twirling and spinning and asking if she can go to ballet classes "to be a real ballerina."

Happy Shavuot to all of our blog family!

Sunday, May 14, 2017

Let's Talk PTSD

I've been very candid on our family's journey with Hypoplastic Left Heart Syndrome.  Anything that is heart related and sometimes things that are not, I post on this blog. But there's an entirely other side to being a heart parent that I haven't been open about. That is the psychological aspect.

I'm a big believer in mental health awareness and I believe strongly that the taboo surrounding these mental illnesses are harmful and outdated.

It is important for me to talk about this side of our story- not just for the sake of being open and honest, but more importantly for the current and future heart families that read this blog. This part is too overlooked and needs to be known. I've had many heart parents open up to me about this part of their struggle and I want them all to know that they are not alone and how perfectly normal it is.

I'll explain by starting in the middle of it all. Last week, I was putting Tehilla to sleep. She has been particularly difficult at night times lately because she's at that frustrating stage where she can't decide if she needs her naps or not. So instead she refuses to sleep and has learned the skill set of procrastinating bedtime. I had sang our Shema bedtime songs and told her a made-up "Princess Tehilla" story and was lying down with her in bed.

She then asked me to sing her a song. A "Tehilla" Song. I told her that when she was a baby I used to rock her to sleep and sing her a Tehilla song. It's to the tune of Lullaby and Goodnight but the words are just "Tehilla" over and over again. It goes, "Tehilla Tehilla Tehililililila Tehilla Tehilla Tehililililila..." You get it. 

She asked me to sing it to her. So there we were sitting in her pink and polka-dotted room, on her pink blankets and I start to sing her the song. It was at the "Tehililililila" that my voice cracked and tears sprang to my eyes. I tried to blink them back and sing on, but instantly my mind took me back to the times when Tehilla was just an infant. I would rock my very purplish baby to sleep and wonder if she would make it through the night. I would softly cry while singing her this song, my heart praying and begging G-d for another day with my baby girl. 

I sang this song to her after surgeries, trying to soothe her pain and discomfort and again, softly crying and begging G-d for her health. 

I hadn't sang that song in two years and in that one instant, last week, I felt the complete weight of the stress and anxiety that we endured daily during her first 14 months of life hit me and I just desolved into uncontrollable sobs. 

The heart parents reading this are nodding their heads in agreement and I have now triggered their own PTSD.

These episodes of post traumatic stress disorder don't happen frequently anymore.

I used to love to cook and at one point had even enrolled in culinary school to become a pastry chef but changed my mind and became a graphic designer. The harder and more complicated the recipe, the more I relished in accomplishing it. But quickly after we brought Tehilla home for the first time, did I bitterly begin to despise cooking. It would be the time daily, when my hands and eyes would be busy, but my mind would begin to wander.

And wander it did. I thought about how much longer we had with Tehilla, if we would get a chance to celebrate a birthday with her, how we would cope without her, and how we would help our other two kids cope without her. Cooking quickly became anxiety attacks that I would blame on cut onions. Doesn't everyone have anxiety attacks from cutting onions? Our menus immediately changed to whatever I could cook within 10 min and that helped me avoid quiet time to think.

It's definitely a very positive sign for me personally that I no longer have anxiety attacks when cooking and I have begun to start cooking gourmet food again.

It's important for me to explain that I have PTSD and have been living with it since Tehilla's pregnancy. I am most definitely in a much better place right now, but every now and then something triggers it. You'd be hard pressed to find a heart family that doesn't suffer from PTSD.

This journey has changed every person in my family. I've put my family in the spotlight enough so I will give my kids the courtesy of not explaining in depth how this journey has harmed them. You can imagine what the instability of us running constantly to the ER or doctor without a moment's notice, sometimes in middle of the night, would do to two small children. None of us are the same as we were before.

We have learned to live in the moment and be extraordinarily appreciative for every blessed day that we have with each other. We live life to the fullest and are more outspoken. We have found parts of our personalities that we didn't know existed.

Our lives have changed for the better since we had Tehilla. She has taught us how to fully live. It just hasn't come without a hefty price for all of us.

Wednesday, May 10, 2017

Extremely Well

Tehilla gave Dr. Golander the silent treatment but at least she wasn't screaming and crying.

Her heart is doing extremely well and we will continue on with the exact same medications and dosages.

The pressures in her heart are still a little too high to close the fenestration (hole left for the bloods to mix). So we will just watch and wait.

Her blood pressure was fantastic which for her is a HUGE win! Her heart rate is great and so is her saturation!

A great appointment! We come back in 6 months.

Cardiology Appointment Today

Because of our trip to the US, Tehilla's cardiology appointment checkup was postponed. She is stable enough for this not to be a problem.

Driving to the hospital is practically a reflex at this point. No attention is needed for directions. It's second nature. To be honest, it means my head is flooded with thoughts and worries.

These appointments are so important but also bring with them an anxiety. The what-ifs take hold and I find myself whispering Psalms while driving.

I'm not the only one combating anxiety this morning. Tehilla heard she was going to the hospital for an appointment and her eyes went wide and she screeched "NO!".

So we have now had several conversations about this being a "friendly appointment" and not a scary one. They will only put funny feeling gel on her chest and take pictures of the inside of her heart to keep her healthy.

She panicked before her vitals were taken but calmed down for a nice blood pressure reading. She hopped off the chair and said, "That was friendly!"

Now we are waiting for our appointment. I reduced MY anxiety by not taking care of the insurance paperwork which without fail always gets messed up and sets us back by hours. I paid privately and will just apply for the refund. If this works out nicely, then this might become my new system.

Sunday, April 30, 2017

Ear Infection and Cough

Before I get to the obvious content of this post- take a look at the dress Tehilla wore today. When I came to pick Tehilla up from school, her teacher asked me why I did not send her in white and blue as had been requested for the school Yom Ha'atzmaut (Israeli Independence Day) today. I said, "There is white and blue on her dress..." Her teacher said, "Come on...you know what I mean..."

I said, "Betty, I know what you mean but you don't understand what I mean. I mean that was all the blue and white you were going to get Tehilla to agree to. And that means it comes with a healthy helping of pink too. She wouldn't hear of anything else, and this was not the battle I was fighting this morning."

When I picked Tehilla up from school, her color looked off and she felt warm. When I checked her temperature it was just a few decimal points away from a fever and I was not willing to wait to get stuck without a doctor over Yom Ha'atzmaut.

So we saw the doctor on call tonight who immediately saw that Tehilla has a very bad ear infection and could hear her cough and associated it with a post nasal drip. Because she has been taking antibiotics about every two weeks,  he prescribed her a very strong medication to hopefully get rid of these bacteria that seem to be lingering.

Let's hope it helps and she can stay healthy.