Our Family Portraits

I am so excited to share with our blog family this post. After our disappointing cardiology appointment last month, I was very disjointed. It was a very unexpected setback and I found myself lost a little. I struggled to remind myself of the joy and blessings.

I reached out to a member of our blog family, someone who has become a friend. I needed desperately to capture our family's joy. I needed this keepsake and I needed it present in our home, constantly visible.

I cannot even begin to explain to you how joyful this family photo shoot was. We all had so much fun and the kids enjoyed themselves so much, that they have asked that we start to do this regularly. I can't possibly promote Faigie more, for her talent and work. She gave us something that we will treasure forever. Here is a link to her Facebook page: Faigy's Photography

Enjoy!

Purple is the New Pink

After a pretty exhausting night, most of us slept in. Tehilla woke up without a fever, still flushed cheeks, and a cranky and whiny disposition.

The on-call doctor very thoughtfully called to hear how Tehilla was and what happened at the hospital.  He repeated the need for Tehilla to be checked out today.

So midday we saw our family doctor.  He was pleased that this on-call doctor had reacted to Tehilla's situation appropriately. He asked some questions and then said, "She's a little purple but looks great otherwise." He read through our discharge papers and felt that the hospital had really checked her out thoroughly.

He said, "So, she's a little purple!" It does seem that she just developed a little virus that had very bad worrisome timing. She is doing fine and seems to be improving. 

Going Home

We have been discharged.  Her blood tests came back clean.  They believe that she has a virus but want her to be checked tomorrow by our doctor.

Yay home!

Toddler Naughtiness

Being in the ER is a different experience with a toddler. Tehilla is being naughty and funny. She removed her pulse ox sensor a few times and puts it back on trying to hide what she's done. She doesn't understand that when the pulse ox reads 96, we know it's not on and it has to be taped down again- with more and more tape.

They might have actually put enough tape on now. Because she can't get it off. So she says, "Mama, this off. Finger hurts. Go home now."

She now doesn't like nurse who took her blood and any time he approaches she starts to shriek. Poor guy. She also yelled at him, "No no no!"

We are waiting for test results and they want to speak to a cardiologist. Her oxygen saturation keeps jumping between 78- 82.

Getting Checked Out

We have had an amazing nurse and doctor so far who have done everything perfectly, including putting EMLA cream (numbing cream) on as soon as we got here for her impending blood tests.

Tehilla has cooperated like a champ. She has been pretty blasé about the whole thing. She let them check her and has been cooperating very nicely.

So far, her chest sounds clear, her oxygen was a bit low for her- it was 77, her blood pressure was her usual high... They found in her throat some pus. So, it could be a viral throat infection.  They did a throat culture and are preparing to do blood tests.

ER Run

We are on our way to the ER. Tehilla finished her antibiotics yesterday and woke up this morning with a fever of 38.4.

All day she ate and drank very little and her fever rose to 39. She started breathing heavily. Her oxygen and heart rate are fine. We called the on call doctor who is concerned that she had a failure of treatment for pneumonia. He is sending us to the ER for blood work and a chest xray.

And here we go...

All Better!

Thank G-d, Tehilla and Tzviel are both better. The antibiotics worked extremely fast for Tehilla and her fever was gone after the first dose.

Today, she went back to school. When I picked her up she said, "I love my friends!"

Here is a picture of Tehilla in a shirt that was gifted to her by my dear heart friend, Heidi. These heart warriors have scars that are often opened and closed repeatedly like a zipper and the scars themselves often resemble a zipper. This shirt that says "Zipper Club Member" is a heart awareness shirt. All our love to you, Heidi!

Pneumonia

Breath in. Breath out.

Tzviel came down with pneumonia last week. He's asthmatic and that had us pretty worried. He started medication and we tried keeping him as much at a distance as you can within a family.

Thursday afternoon, Tehilla woke up from her nap with a fever. I put in a call to our family doctor and we both agreed that Tehilla should be brought in to be checked Friday morning and have a chest xray.

Our regular doctor was not in Friday morning,  so we saw the on-call doctor. I won't get into too much detail but he basically pegged me as an overprotective mother and didn't want her to have a chest xray because he saw no symptoms to suggest pneumonia.  It really wasn't his decision as Tehilla's doctor had requested it. In the end, there was no x-ray technician on Friday.  He ordered blood work which came back clean. He gave me a patronizing speech about not over medicating my child because of some fears. I bit my tongue.

Well, all Shabbat Tehilla's temperature stayed and got higher. It wouldn't break all Shabbat day, so I finally called our (new) cardiac nurse, Doreen. She and I talked about it and felt that as long as her oxygen level was normal, which it was, to keep trying to reduce her fever, but that she must be seen after Shabbat.

So, the same on-call doctor checked her. Her breathing was heavier, and there was some problem in her left lung. He started hemming and hawing over whether to send us for a chest x-ray in middle of the night or to start antibiotics right away.

I cut in very sternly and said, "Our cardiologist should be consulted and make the decision." He agreed and of course our cardiologist insisted she start antibiotics immediately after explaining how severe pneumonia in a child with HLHS can be. We then checked her oxygen level which was at 74-75. Her baseline is 80-85.

She's now sleeping and I'm pretty angry that I was patronized, while she could have been on medication 30 hours ago.

She needs to be checked everyday until her fever is completely gone.

First Day

I am really incredibly touched by everyone's enthusiasm and emotions for Tehilla's first day of school. It truly emphasizes to me how much this blog is a family. I absolutely love it.

12:30 pm strolled around and I walked into Tehilla's gan. I came in to find Tehilla jumping on climbing toys. She didn't notice me at first. Betty started gushing over Tehilla and how she plays so nicely and really interacted with all of the kids. She was "a pure joy". The assistant teacher told me that she was really surprised by Tehilla's understanding of Hebrew. They are making sure to use gestures when talking to her in Hebrew, but she is understanding everything. At one point, Tehilla was playing outside, and one of the teachers called to her from inside, "Tehilla, come inside and sit down at the table to eat." She walked right in and sat down.

Tehilla finally noticed me talking to the teachers and this was our conversation:

Tehilla: Oh! Hi, Mama!
Me: Hi Lulu!
Tehilla: Me play school! Play toys! Lulu love play friends!

Then she turned back to keep jumping.

Me: I'm so happy that you love school so much and have so many nice friends. It's time to go home now.
Tehilla: I play friends! I stay Betty! No go home.

The other kids were going down for their naps, so I had to pick her up and take her out.

Tehilla: Mama? I sleep friends? I sleep school too!!!

She clearly had an amazing first day at school. She kept going over to each of us and telling us about school, Betty, friends and toys. It was very cute. She's adjusting remarkably well, although we'll see what happens when the novelty wears off.

Thank you for being on this journey with us and really understanding what a huge milestone this is for us!

Off to School!

Tehilla went off for her first day of school! Neither of us cried. I actually am completely calm, and feel confident in Tehilla's teacher, Betty.

To clarify, Tehilla does not have a medical shadow with her. She would only get it for a municipality daycare. The private daycare that she is in has 16 kids and 3 staff members. Her daycare is Hebrew speaking. I always had a suspicion that Tehilla understands some Hebrew, from hearing it all around. Her teacher spoke to her in Hebrew with gestures and she really seemed to understand. For now, Tehilla is only there until 12:30 pm. After she adjusts to the school, we will move her to a full day.

Part and parcel of our heart journey was sending Tehilla with diapers, wipes, a change of clothes, a sippy cup and a pulse ox. I showed Betty how to use it and told her it would only be in an emergency situation.

Starting School

I have posted before that we tried to put Tehilla into a private daycare (gan) at the beginning of this year. When I called and spoke to a few of these daycares, I listened to them describe their facilities, and schedules and when they were finished, I explained to them about Tehilla. I tried to say it gently and educationally, but it was always met with , "Gasp! I can't take care of a child like that. I won't take the responsibility! I'm sorry. I can't accept your daughter." One teacher even said to me with an air of disgust in her voice, "Why are you even trying to put a child like THAT in school."

Feel free to hurl expletives at said teachers. I did after I hung up.

One of our original PICU nurses who is now a dear friend, said to me, "Listen, Shoshana. Tehilla is so much more than her heart defect. When you just hear about her heart, you immediately conjure up an image of a sickly child. When you meet Tehilla, you see a normal 2 year old, who might be a bit out of breath sometimes. When you hear what she has been through, you are moved by such a miracle in front of you. From now on, don't tell the teachers on the phone about her heart. Get the details, and go to the gan (daycare). Once they see her and how normal she can be, then tell them about her heart."

That was really great advice. We thought about putting her in a municipality run daycare, but didn't feel comfortable with her being in such a big group of kids, without more careful supervision because of her heart. We applied to Bituach Leumi (Social Security) for Tehilla to get a medical shadow. Thank G-d, we were granted one. However, at this point of the school year, there are no more places left in the municipality daycares.

So, while Tehilla has been exceptionally destructive and difficult, we set out again to find a private daycare. This time, I listened to my friend. I was recommended a school and spoke to the teacher on the phone. I didn't mention anything about her heart. Yesterday, Tehilla and I went to see the gan and meet everyone. Tehilla instantly left my side and started playing with the toys and interacting with the kids. She ran up to the teacher and started talking to her.

Then she and I sat down and I explained that I didn't want to say anything before she met Tehilla, but now I should. I launched into an explanation and waited for the huge gasp or terrified look. But it never came. This teacher listened intently and then said, "What do the doctors want for her? What do you want for her? Explain to me about her previous surgeries. What are the signs to look for?" She asked questions calmly and wanted to understand everything.

After everything, I said, "I know I just gave you a lot of information and if Tehilla comes here, I will give you a detailed plan of what to do in different circumstances. It was a lot of information."

The teacher turned to me and said, "Yes. It was a lot. I guess you need some time to think."

I said, "Me? I've thought this through. I'm more concerned about you." She then hugged me.

And that, is why Tehilla is starting school tomorrow.

When I told Tehilla it was time to leave, she stomped her foot and screamed, "No! This my school! No go home!"

Challah for Tehilla

Tehilla's heart catheter is set for March 28th. We will be going to the hospital the day before to check in, do blood work, have Tehilla examined and any other pre-catheter work up.

This blog has supported us and embraced us during the most difficult points in Tehilla's 2 years and 5 months. You all have shown us love and any time that we has asked for anything, you have risen to the occasion.

Before Tehilla's previous surgery, her Glenn, I asked for people to bake challah with us. I said it before and I will say it again. I personally find baking challah bread to be a very spiritual experience. It is a task that gives me a lot of time to think. When I am mixing the ingredients and kneading the dough, my mind wanders to the various women throughout the world, in all cultures and throughout history, that have performed this task. My mind wanders to prayers they may whisper while doing hafrashat challah (separating the dough). It gives me a feeling of connection and community.

Bread is the most basic staple food. Yet, when we bless it and do this mitzvah of hafrashat challah, we are infusing spirituality into this food. We are transforming it to be something above the natural world.

Our little sweet Tehilla is a miracle. She has proven to us time and time again how strong she is. G-d has shown us the most incredible miracles through Tehilla.

There was a point during Tehilla's last surgery- a critical point. They were starting to reconstruct Tehilla's heart and move forward with the Glenn. Those that know me personally, know that I don't really toy with esoteric concepts too much. So believe me when I tell you, that during that critical point in Tehilla's surgery, the hospital became overwhelmed with a smell of challah. It was strange and wild and ridiculously meaningful. Our nurse and surgeon's secretary commented that we were smelling the challah bread that people had been baking all over the world with Tehilla in mind. 

We are 7 weeks away from a very crucial heart catheter. All I can think about is that challah bread. So, now I'm going to ask my blog family, if we can once again perform this mitzvah in Tehilla's merit of a safe catheter that provides answers and solutions to moving Tehilla towards her eventual Fontan surgery.

I'd like to ask people in communities to organize challah bakes. We get asked a lot how people can help. This is how you can help. Organize or partake in challah bakes in your homes. Send us pictures of your challah bakes! Our family would love to see them, and I will share them with the blog. If you are organizing a challah bake, please email me and let me know so I can help people find challah bakes.

tehillasheart@gmail.com

Later, I will post my recipe for challah and instructions on how to perform the mitzvah of hafrashat challah.



Here is a picture of Tehilla in all her cuteness.

Further Explanation

Judging by the conversations that I have been having with friends and family, I realize that I should probably further explain the situation right now with Tehilla.

Tehilla has HLHS. She essentially was born with half a heart. Through a series of 3 staged surgeries, the plan is to reconstruct her heart, so she can G-d willing, continue to live and thrive. Tehilla has had 2 of those staged surgeries: the Norwood and the Glenn. She also had an additional surgery in between those.

Right now, Tehilla is being a sweet, adorable, extremely fiesty two year old. She is doing fine right now on her Glenn. But, at some point, she will outgrow her Glenn and need the last surgery in the series: the Fontan. Without it, well, she can't survive. Obviously, we never want to get to the point where she critically needs the surgery. That time frame is around next year.

At the moment, Tehilla's blood pressure is out of control. We have spent nearly a year trying to get it under control with a wide variety of medications. Having such high blood pressure is weakening the muscles in Tehilla's heart. She takes a medication called Digoxin, that forces her heart to squeeze. Therefore, her heart is functioning, because this medication is forcing it to function. But she cannot have her Fontan surgery with her blood pressure as high as it is.

Our cardiologist believes that a certain part of Tehilla's aorta has narrowed. He is worried that some of the foreign tissue from Tehilla's first surgery is collapsing and causing her blood pressure problem.

Tehilla must have a heart catheter. The goals of the heart catheter are to 1) measure Tehilla's blood pressure from within her heart when she is sedated to get a very real idea of her blood pressure and 2) to take measurements of her aorta and investigate if there is narrowing.

If during the catheter, they find a very small area of narrowing, then they will insert a deflated balloon and inflate inside her heart to dilate the aorta. For many, this has saved them the need for an additional surgery. For some, it didn't fully work and surgery was necessary anyways.

If during the catheter, they find a bigger area of the aorta is narrowing, then we have no choice but for Tehilla to have heart surgery. It will be an incision under her arm pit, where they will go in and repair her aorta.




Tehilla's heart catheter is on March 28th. They specifically picked the start of spring, because after any procedure, she will be more susceptible to infection and illness. Spring simply is a healthier time of year.


I have been asked several times over, "Okay...so what do we want? What should we pray for?"

There is only one answer- we want her to be a candidate for the Fontan. That's it. She must move forward and have the Fontan surgery. So, whatever we need to do, to get her there, is what needs to be. We have no choice. Whether it's a balloon dilation or heart surgery- whatever it takes to get her to her Fontan.

That's what you should pray for. That the doctors successfully find the cause of Tehilla's high blood pressure, that they find the correct method to get her blood pressure under control and that she heals and recovers well. That she be allowed to have her Fontan surgery.