Tuesday, November 25, 2014

Our Treatment Plan

Warning: Long but important blog post. Read until the end.

We have about 9 days to go before Tehilla has her long awaited Glenn surgery. Every good doctor will explain a diagnosis and then offer a treatment plan. We have that. We have had that since I was pregnant with Tehilla. And yes, the plan has had many alterations along the way, but the basic structure of the plan has stayed the same- 3 stages of surgeries: 1. Norwood  2. Glenn  3. Fontan.

And as has already been explained on this blog, Tehilla is not a standard, or straight forward HLHS case. We are going into this surgery with added risk, due to Tehilla's raised pressures inside her heart and extremely small pulmonary arteries.

Every day, the knot in our stomach tightens a little bit more and we find ourselves hugging Tehilla a little bit longer and harder. We remind ourselves that this is our only option and that we must push forward.

This is the treatment plan that Ron and I have outlined for Tehilla's surgery. As our extended blog family, you should be aware of your role in this. ;-)


1. Incredible Doctors

We have a phenomenal surgeon, Dr. Erez and absolutely perfect cardiologist, Dr. Golander. We have complete confidence in them. Our instinct has told us repeatedly to trust them and we believe that Tehilla's remarkable well-being, is due to their critical decisions. We are going into surgery without the slightest doubt in our doctors' abilities.


2. Prayer and Actions

This blog was initially intended for family and friends to keep up-to-date on Tehilla's progress. Since the day the blog was published, it has gotten a bigger and stronger following. People have written to us from all over, telling us how Tehilla's story has inspired them. In turn, thousands upon thousands of people have been praying for Tehilla. This blog has helped Tehilla live up to her name, "Praise." Hearing about a miraculous little baby with half a heart has caused quite a commotion in the heavens. Tehilla's success is in no small part, because of you. Because of you- reading, saying Tehillim (Psalms) and keeping her in your prayers. This blog has had over 190,000 views. That is amazingly ridiculous.

People- sorry- You have heard our pleas for action. You have taken things upon yourselves in Tehilla's merit. The "No Talking for Tehilla" initiative (students have pledged to not talk during daily prayers in Tehilla's merit) that was started by Rabbi Baruch Gopin of Yeshiva University High School has increased to many classes and now, other communities in the US.

Rabbi Eliyahu Haber started a "No Phones for Tehilla" initiative (students pledged not to use their phones, while learning Torah in Tehilla's merit).

There is an initiative to increase awareness and learning about Lashon Hara (derogatory speech) in Tehilla's merit and an initiative to do acts of kindness in Tehilla's merit.

Of course, I also asked that people bake challah in Tehilla's merit the day before Tehilla's surgery (Wednesday, December 3rd) and 101 people signed up online.  https://www.facebook.com/events/376364139194273/ As well, I have heard about various communities organizing big challah bakes on that day.

Our family's story may inspire you, but you are inspiring us, as well. You are giving us strength.

Please keep up everything that you are doing. I will post a reminder about baking challah for Wednesday, December 3rd. Remember to email the pictures to tehillasheart@gmail.com with your name and city, and I will post them up on the blog.


3. Support and Love

We are surrounding ourselves and Tehilla with support and love. Our friends and family have all stood up and opened their arms wide to help us, while Tehilla is hospitalized. We have gotten many messages and emails from you and we love each and every one of them. They build us up and strengthen us.

You have shown us so much kindness and love. Every drop of it helps. Now, I have something extra for you to do.

WEAR RED FOR TEHILLA

On the day of Tehilla's surgery (Thursday, December 4), wear red to show your support. To show you are part of Team Tehilla. Whether it's a piece of clothing, a head covering, a tie, or red lipstick. Wear red.

Take a picture of yourself and send it to us at tehillasheart@gmail.com. If you are on Facebook, use the hashtag: #TeamTehilla, so that everyone can see it. It will cause awareness about congenital heart defects. Feel free to include something like "1 in every 110 babies is born with a congenital heart defect" or "Supporting Team Tehilla's fight with a CHD."

This may seem insignificant to you, but it would mean the world to us. Show your support, and spread awareness while Tehilla is in surgery.

During her surgery, we will not be answering our phones or messages, but we will be seeing all of your photos. Her surgery will be 6-8 hours long. Getting these pictures during those frightful hours will fill us with warmth and love. I will post all the pictures that we receive to the blog.


4. Organized

We are getting our home and family organized. Trying to plan everything exactly and creating several backup plans. By the time we get to the surgery day, our home will be running efficiently and Mechal and Tzviel will be well cared for, and surrounded by family and friends.


5. Essential Oils

So, this is something new, for me. I'll be honest- I'm not a believer. Many, like a crazy amount, of heart mamas swear by using essential oils post-op to aid in recovery and healing. If you know me personally, you know that I am all about scientific backing, and this is extremely strange for me.

That being said, onions turned out to have some healing properties for coughs and have helped us in several difficult situations.

I am also willing to entertain the idea, that different scents and smells do help us to relax and are soothing. I can not see any reason not to try this.

We have had a custom essential oil massage cream made up by someone who does this professionally. She has named it "The Healing Heart Blend." It is made up of ylang ylang, geranium, lavender, cypress and chamomile.  The idea is to rub it on her feet and for it to soothe and relax her, while she is recovering.

*Shrug* Why not?


6. Positive Attitude

Tehilla is going to rock her Glenn surgery. We won't entertain any other thought. We are pumped and positive and excited to witness a miracle. Do you believe in miracles?

My baby's every breath is a miracle. Her every giggle, her every severely psychotic cat "Meow" is a miracle. She shines bright and beautiful, as does her soul. She has brought light and faith into this world. We believe that G-d will continue to use her as a tool, so that people may find Him and praise Him.

Believe with us.

9 comments:

  1. Tehilla's Mama,
    For myself i will say this, YOU have been such an inspiration to me. You are such a strong and wonderful Ima, wife,daughter, friend.. to so many.
    Yes, you do not know me, but what i say is, Hashem chose you to be Tehilla's Mama, as Hashem knew exactly what this beautiful baby girl needed.
    You and your family are a light to many of us too.
    You are something incredibly special.
    Yes, will keep you in prayers, especially Tehilla. Will wear something red that day as you have proposed.
    Hugs to Tehilla, and to you, and to all your family.
    A special 'Meoooorrr: to Tehilla.
    It simply means in cat language: I love you Tehilla :)
    sc

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    1. Dear Shoshana,
      Sending my love to you all from Loveland, Colorado, and I am also praying for miracle upon miracle for Tehilla. In fact, I love to pray for unfathomable miracles.

      You see, I was born blind, and the doctors told my family to start now to look into special schools for the blind. I was blind for that first 3.5 months of my life until one Shabbat, I spontaneously reached over and grabbed a piece of lint of my mother's sweater.
      Some internal neurological body part must have been re-grown, but hey- He spoke the universe into existence, so are some human molecules any big deal to Him? If he can do this for me, Tehilla is safe in His hands.

      It is a pleasure and honor to pray for her and do mitzvos in her merit, and thank you for making the need known and giving us the opportunity to show her and you this love.

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    2. Thank you! This brought a smile to my lips and tears to my eyes.

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  2. I will be baking challah and wearing red, giving tzedakeh for merit for Tehilla. Sending love and also will be praying for your precious baby.
    Love to you all.

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  3. Okay, it looks like my first comment didn't go through. Basically, hi, you don't know me but we have mutual friends and I have been davening for Tehilla since she was born and I have baked challah for the last several weeks in a row and have signed up to do so before surgery, and if burgundy counts as red I will gladly wear it that day! And I'm davening hard, and I believe it will go well! <3 Rivka Anderson

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  4. Thank you, Rivka. That means the world to us. Love to you!

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  5. Will be praying for b'ezrat Hashem a full and speedy recovery

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