Tuesday, September 30, 2014

True Tehilla Fashion

In true Tehilla fashion, she is sick on the eve of her 1st birthday.

She has had a little cold and been very unhappy the past few days. But today, she spiked a fever of 38.7 C (101.6 F). We gave her Tylenol, but it wouldn't bring her fever down.

We went to go see the on call doctor. He completely examined her and said that her ears, lungs and everything else look completely great. He suspects that she may have Roseola. He told us to give her Optalgin (a fever reducing and pain relieving medication not found in Canada or the US), and wants her to be seen every day or every other day by one of the doctors in the clinic.

She is completely miserable. Let's hope that she sleeps through the night and feels better by tomorrow. One can hope, right?

Tomorrow

Tomorrow, Tehilla turns one years old.

I have spent the past few days, working out my speech for the Pediatric Cardaic Care Symposium tomorrow. Going through all of the blog posts and rereading everything, really gave me the opportunity to appreciate how far Tehilla has come. I looked through each of the pictures and teared up, watching her grow from image to image.

It's hard to believe that we are at this stage. Every single moment of this past year feels so recent. Our Tehilla has survived. Not only that she has thrived! We were once upon a time warned about what kind of quality of life, she could have. It's overwhelming to see that she is having a wonderful quality of life. Yes, she has had two open heart surgeries. And two heart catheters. And many ER visits.

But, she is talking, and walking along furniture and happy. So very very happy.

I created a video montage of many of the pictures from her first year of life. There are some graphic images from her surgery. All of these things, have made Tehilla the little princess heart warrior that she is today.

video



A huge thank you to everyone who reads the blog. While Tehilla's story may have inspired you, you all have brought us strength in some of the hardest times. You truly are our blog family.

Saturday, September 27, 2014

Our Journey

We just completed a wonderful three day holiday, filled with delicious food, a great time with friends and some family, and incredible quality family time.

We started off Rosh Hashanah (explanation) with Tehilla having a cold and starting to develop a slight fever. By Wednesday night, it looked like she had an infected eye. We started to get really worried that this was going to be a mess of a holiday. But in fact, some sleep and rest did the trick and she has been doing much better.

Tehilla has started to call Mechal "Mich". She crawls around yelling "Mich! Mich!" and then hands her toys or food. She has also started cruising along furniture. Thank G-d, all is doing well with Tehilla.

Last Tuesday, I was invited to speak at a pediatric patient care conference at our hospital, Hadassah Ein Kerem for this coming Wednesday. I will be giving a 30 minute speech about Tehilla, this blog and Little Lev. I really can not properly express how stunned I am by this. It will be in front of nurses, doctors and surgeons- a bit of an intimidating audience.

This Rosh Hashana, I had the opportunity to go to shul (synagogue) for some time. It was an unusual experience this time around. Without sounding too dramatic, the situation that we are in with Tehilla, forces us to think about life and death, at least once a day. Our journey has opened us up to a world of unwell children. We always knew about these kind of situations, but it was so far removed from our reality. If you could only truly understand what a ridiculous miracle it is when a child is born into this world completely healthy.

I can only speak for myself. In the past, my family's and my mortality was not something I thought about on a daily basis. So, when I got to Rosh Hashanah, it was a heavy experience. I would beg and plead and took the entire holiday with extreme seriousness, as well as some festivity.

This year felt different. This year, I felt comfortable standing and listening to the shofar being blown, knowing that every day I try to live life to the fullest with my children. It sounds inappropriate, but at one point, I felt like laughing during the prayers. I kept thinking to myself, "I spend so much time worrying, and it comes down to this day. This is the day. Make it count, Shoshana."

And I did. I pulled from all my anxiety over Tehilla's heart and prayed. I prayed that Tehilla continue to be a source of praise to G-d. I prayed that she live and thrive. That Mechal and Tzviel live and thrive. I prayed for all of our friends and family to continue to see good in their lives.

This week on Wednesday, the day I am supposed to give my speech, is Tehilla's 1st birthday. Expect a bunch of emotional blog posts. I can not think about the day without tears filling my eyes. Our journey has made a full circle- and now I have been asked to talk about it, in order to inspire the medical world to provide better care for children.

To a year filled with laughter, treasured memories, time to enjoy and the wisdom to appreciate everything.

Wednesday, September 24, 2014

Shana Tova!

Rosh Hashana is an appropriate time to reflect on the previous year. It's a time to weigh our achievements and failures and to learn from them going forward. It's a time of judgement for what will come the following year.

This past year brought us the greatest highs that we have ever experienced. It also brought us some difficult lows. Last year on  Rosh Hashana, I was extremely pregnant. We had survived several months of a ginormous question mark hanging over our heads. Would Tehilla survive? Would we get a chance to hold her while she was alive?

I remember last year, Ron came home from shul and said, "I felt my soul shake when I said the tefillah of "U'netaneh tokef". It's a prayer where you beseech G-d for your life. You say, "Who will live, and who will die."

Before Tehilla's birth, there was a small circle of people that knew about our situation. It wouldn't have mattered what suggestion we had been given, we tried everything. We prayed and gave charity.

And today...today, Tehilla is nearly a year old, smiling and shining every day.

This year, we will be praying with all our souls, that G-d help Tehilla and our other two children to continue to thrive.




Shana tova to you all and to your families. May we all be written in the book of life. May all of our prayers be answered favorably and may we continue to see the good in our lives.


Sunday, September 21, 2014

More!

Tehilla has been pretty miserable trying to cut two teeth on the top of her mouth. They are just about to cut through. She hasn't been sleeping well and has been pretty miserable throughout the day.

She learned a new word. More! As in "more food, right now!" She likes to eat...

Friday, September 19, 2014

Wednesday, September 17, 2014

Cautiously Optimistic Appointment

We had our appointment with Dr. Golander, our cardiologist. Tehilla dazzled everyone with her cuteness and then eventually with her perfect set of lungs. As Dr. Golander said, "Well, I can say without a shadow of a doubt, she does not have vocal paralysis." She doesn't love having an echo done. She is usually well behaved until they go searching for her pulmonary arteries by her neck. That's when she screeches, rips off wires, and um, throws toy telephones at her doctors.  We'll work on her behavior, as she gets older.

Anyways, from the echo, Dr. Golander could see that her heart functionality looked very good. This is great. It shows us that the Enalapril has been helping her. There's no way to know about the pressures in her heart from an echo.

As far as her pulmonary arteries go- there was difficulty in the imaging. Translated to: she's a toddler and wouldn't hold still and there was only so much screeching and crying they would put everyone through.

Here is what they think they did see- although, be reminded that an echo on it's own, even with a completely sedated child, does not always show a clear picture of what is going on...

I am choosing my words carefully here. It appears that there was some growth in the middle of her pulmonary arteries. It appears that her pulmonary arteries are now 5 mm throughout. He could not get a good visual of her left side.

5 mm, is the barely bareable minimum for her to have her Glenn surgery. It is 'almost, just a smidge more' what they need.

I will add that I am skeptical about what we think we saw. This has nothing to do with confidence in our doctor, who clearly knows what he is doing. It's just hard to believe that her pulmonary arteries suddenly became uniform in size and grew a teeny weeny bit in one month. Especially since we have been waiting since March for growth. Especially because we thought she was Glennable and was proven wrong from her catheter last month.

Just my "unprofessional" mother's opinion.

So...

What this means is that right after the holidays, next month, after Sukkot (huh?) we will have another echo and appointment with Dr. Golander. Then, they believe that there is a real possibility of doing the Glenn. We will meet with Dr. Erez, our surgeon, and discuss if he feels that she is ready for the Glenn. We will also discuss if she should have another heart catheter, given the AV Block that she had last time.

Fingers crossed, prayers in our hearts and on our lips.

If it's not too much to ask, I would obnoxiously request, that during Rosh Hashana (what's that?) and Yom Kippur (another one?), you give Tehilla just a slight thought during your prayers. It is a time to ask for mercy and a time where life and death hangs in the balance. I feel uncomfortable asking, seeing as we are all going to be pouring our hearts out for our own families. But if it's possible for just a half a minute, I believe we could cause some kind of commotion in the heavens.

Tehilla bat Shoshana


Tuesday, September 16, 2014

Sass





Tehilla's personality has really been coming out more and more. Every day, we see a little more sassy and spunk in her behavior. This morning, Tehilla waited to wave "bye-bye" to Ron, Mechal and Tzviel as they left to school. The moment the door closed, she turned and crawled quickly into Mechal's room, and then went straight to Mechal's bean bag chair and lay down on it. I grabbed my phone and got a quick shot of it.

She is also not afraid to give Tzviel or Mechal a smack if they take her toys away.

Tomorrow, we have our appointment with our cardiologist. He will do an echo and let us know the plan that the team of doctors have decided, in terms of waiting for Tehilla's Glenn surgery.

Once again, please pray that this echo shows significant growth in Tehilla's pulmonary arteries and that the pressures in her heart have slowed down, and that she is a suitable candidate for the Glenn.

Friday, September 12, 2014

Standing!

Tehilla seems to be learning new skills each day, both verbally and physically. She has started crawling pretty quickly. And this morning, she pulled herself up to stand.



Shabbat Shalom to you and your family!

Tuesday, September 9, 2014

Bbye

Tehilla has been learning all kinds of new tricks to get her opinion across. Here is today's new one:

video

Sunday, September 7, 2014

Exploring

Apologies for not updating sooner. It has been a busy week with Mechal and Tzviel going back to school and getting back into a rhythm. As well, I was under the weather this weekend and Tehilla was teething terribly.

But everyone is fine and healthy and Tehilla is doing great. She now knows where her "head" is and when she touches it, she then applauds herself and says, "Yay!" She is crawling more and more and starting to actually get herself into a bit of trouble.




She has also starting to learn a new "trick" to help her explore more...