You Are Invited

We are having another Mesibat Hodaya, party to give thanks to G-d, for Tehilla's second heart surgery.  If you have been along with us for our journey, and had Tehilla in your prayers, then you should be able to rejoice with us, as well.  It would mean a lot to meet our "extended blog family."

It is on Friday, May 9th from 10:30am-1:30pm. Please email: tehillasheart@gmail.com and I will send you a link to the evite.

Please Mail

We are extremely appreciative to everyone who donated blood on Tehilla's behalf. If you donated blood, then you were given a little piece of paper.  We are required to bring the originals to the hospital to give to them, so that the blood will go towards Tehilla.

If you donated blood, please email tehillasheart@gmail.com and send a picture of the paper you were given.  I will reply with our home address and ask you to please mail it to us. We have no way of getting the slips of paper any other way.


Thank you!

April 25th

As adults, we can look back on our lives and pinpoint moments that brought forth a change. For us, April 25th will always be one of those moments. It is the date of my early 3D anatomy ultrasound at 15 weeks.

With the words, "I do not see four chambers of her heart" we were shoved into the world of congenital heart defects. 

The Shabbat after Pesach has a unique custom: baking challah bread with a key inside or in the shape of a key. It has a Kabbalistic source based on a verse, that this Shabbat is a special time when the gates of sustenance and the gates of mercy are unlocked. 

I have not baked challah in a year. For the remaining six months of the pregnancy, and six months of Tehilla's life, I have not baked challah. But we certainly are at a point in our lives where we need the gates of mercy to unlock. That the anniversary (diagnosiversary?) coincides with this Shabbat, is significant for us. 

So, I tried something new:

Biscuits

We are moving on to finger food. Tehilla loves these baby biscuits. Just look at how excited she is when I gave her one. 

We also got her first night of sleeping through the night. 

Weakened Heart

We just had our appointment with Dr. Golander. He did an echo. The muscle in her heart is weaker. He does not know the cause. This was why she has been sweating excessively. It is possible that the cause is because of the new flow that she has from the BT shunt. She will be starting a new medication called Enalapril. It should help her with the pressure of the flow. We come back in two weeks for another echo and appointment to see if the medication is working. This is the lightest treatment, and if necessary, there are stronger dosages and medications to try. 

We gave Dr. Golander this new scrub cap. 

Appointment Tomorrow

After a few back and forth phone calls, Dr. Golander and Dr. Erez looked over the findings of our doctor and think that she is probably not in congestive heart failure.  She still needs to be checked, to be sure. They are both swamped with appointments and surgeries today.  Dr.  Golander is coming in special for us tomorrow morning, even though he has reserve army duty that night and is not supposed to be working.

Thank G-d for our wonderful cardiologist!

Possible Heart Failure

We went to see our family doctor.  He checked Tehilla and asked that we see our cardiologist. He said that she is possibly having congestive heart failure.  It is not at an emergent point.

I called our nurse, and tomorrow they will arrange for us to have an appointment.

If you could please have Tehilla once again in your prayers. (Psalms 57, 58, 75)

Tehilla bat Shoshana

Post-Pesach Update

I have been sleep training Tehilla and have been making huge progress. She now will go 6.5-8 hours without eating at night. Last night she woke up at 3, but as soon as I put her pacifier back in, she fell right back to sleep. If it gets to 5am, and she wakes up, then I'll nurse her. So, we are all on the road to more sleep.

I have also been giving Tehilla more food. She has gotten chicken and meat in an extremely smushed up state. She loves food. 

I had to put a call in to our nurse tonight, because over the past few days Tehilla started sweating very badly when she eats and even when she sleeps. To the point that she had beads of sweat running down her head. We were told to take her to our doctor tomorrow morning. 

Sleep Training

That face you see may be cute, but it's the face of a nighttime monster. No, not my husband. The little one in yellow. 

Every night, Tehilla wakes me up for hours to nurse, or be held or just to lay next to me. I have a permanent headache and am losing my mind. 

With my other two kids, when it came time to sleep train them, I used the crying it out method. Within a few days, they would sleep through the night. Tehilla is not allowed to cry it out. With the circulation she has from her Norwood, crying for that long would put too much stress on her heart. 

So, we will be trying other sleep training methods. But we all need a good night's sleep. 

We Love You, Rebekah!

Our dear friend, Rebekah, just messaged me. Look what she made for Tehilla's next surgery.

Again, please support this amazing heart mama and her amazing hospital gowns at: https://m.facebook.com/forlandonsheart

Happy Pesach!

Have a very happy Pesach from our family to yours!

Filling up

We are about to start the holiday of Pesach. All is clean and prepared and ready. 

Tehilla has been quite difficult the past few days. She's been very irritable and hardly sleeping at night. I'm assuming that it is her teeth. For all the teething this girl has done, we have yet to see a single pearly white. Which is a shame because she now looks longingly at any food that anyone puts in their mouth. 

I'm trying to get her sleeping better and more full by giving her two set meals of baby food a day, that replace some of her bottles. 

 

First Word!

I was nursing Tehilla and she turned to look at Ron. She smiled and let all the milk in her cheeks spill out. Then, she went back to nursing. She turned to look for him again, but he already left the room.

She then perfectly said, "Abba."

Shabbat Shalom to all of you! 

Your Response

The response we got, in just 10 hours, moves me to tears. Thank you, thank you, thank you. It looks like this organization is going to really happen. Thank you for being there for us. 

Keep the offers coming in! 

The Start of Something

On Monday, we were in the hospital for Tehilla's cardiology appointment.  I want to recount to you a situation, to make the rest of this post clear.

I was sitting in the waiting area of the pediatric cardiology offices, after our appointment with Dr. Golander.  After each appointment, the doctors go into an office and type up an entire summary of the echo and their findings, to put on file.  They, then, give you a copy.  I was sitting on the chairs, with Tehilla in my lap and Mechal sitting next to me, playing on my phone.  A hospital porter wheeled a newborn baby boy into the department, with his mother following directly behind. The porter dropped them off, and by the way this new mother said, "Toda Raba (thank you)", I could hear that she was clearly an English speaker.

I watched her sit down in a chair close to mine.  She didn't sit fully back; her back was stiff with tension.  She looked at her little newborn baby boy, and gave him a weak smile. Then looked up and stared at nothing specific, and had a look on her face, that I recognized, all too well. It is a look that any parent who has a child with a disability, disorder or sickness has worn on their face, that very first time.  Then, I did something for her, that I wish someone had done for me.

"Hi. Is he your first?"
"What? Oh, no.  He's my second." She, again, peered down at her son and gave him that weak smile.

 "What is going on with him?"
She looked directly at me, with tear filled eyes, and said, "We were supposed to be discharged today. The pediatrician was just giving him a final check and he said he heard something.  Now, we are here.  I just don't understand. He was fine.  He is supposed to be fine."

"I hope that everything is completely fine and he is as healthy as can be."
"Thank you."
"I want you to know, that if there is something, you are in the best hands.  The doctors and surgeons here are phenomenal. But I still hope that everything is totally fine."

For the first time, she really looked at me and said, "What's your story?"
"My baby was born with half a heart."
She gave that look, that we have seen so many times, of utter disbelief.
"What? How is that possible?!? How do they make her another half a heart?"

"They don't.  They restructure the half that she has, to be able to function like a normal heart. She has had two surgeries and will need two more."
"Oh my G-d." She then glanced over at her baby.

"Not to worry. We knew about this in the pregnancy. We found out during the anatomy scan." Her shoulders relaxed just a drop.

I stood up, walked into the office and took a pen and a piece of paper and wrote down my name. "I hope that everything is completely fine with your son. Just in case, this is my name. Please look me up on Facebook and I can help you find resources and support."
She nodded her head and blinked back tears. "Thank you. Thank you very much."
"You really are in the best of hands. I completely recommend Dr. Golander."

Dr. Golander came out shortly after that, with our papers and we left.

I wrote this story in detail, to express this small exchange that was infused with so many emotions.
 
This is not my first thoughts. Rather, I have been mulling these ideas and thoughts over for months now. Six months, to be exact. I have had discussions with other heart mothers in Israel. I have spoken with our nurse, Yifat and our cardiologist, Dr. Golander.  Everyone agrees and many many are on board.


In America, there are organizations like Little Mended Hearts, or Sisters by Heart or Little Hearts.  There are incredible programs like Tiny Superheroes or Beads of Courage.  There are extraordinary organizations and programs working hard, to provide support and resources to those newly diagnosed with congenital heart defects and continued support for those living with it.  Shortly after being given a diagnosis, a doctor or nurse will help those families by directing them towards help.

Here, in Israel, we do not have any of that. I was left with words that I couldn't pronounce that had no real meaning to me and a horrifying prognosis. I went home and did a search on Google. There, I was directed to information that was explained on my level and support groups on Babycenter. From there, someone pointed me in the direction of the Heart Mamas group on Facebook.

Ron and I were lost in a sea of new terminology and were completely alone, for awhile. Our friends and relatives could only provide us with the same information that we had already seen.

There needed to be a pamphlet handed to us by the cardiologist that did my first prenatal echo.  There needed to be a website in English, Hebrew, Russian and Arabic with smiling faces of heart warriors and lots of information.  This website had to have a chat forum for families like ours.  There needed to be one direct spot to go to that had names of recommended cardiologists, social workers with helpful information, and lists of contact information.

Instead we have slowly been wading through this and compiling information.  After speaking to many heart families, in Israel, they have all had the same experience.

There needs to be something, but there isn't.  But that's going to change.

I want to start an organization, and build it up slowly.  It will have everything that I have already mentioned, and hopefully build on that.  If you have been following our journey and read through this post until here (I am so sorry for it's length!), then this is your chance to help us. Not just us, many more like our family.

If you have a skill, profession or business, that can help us get this off the ground and are willing to donate your time, that is what we are asking for at this point.  We need to start with a website, translated into the various languages that I mentioned. If you have experience running or starting up a non-profit organization, if you are a web programmer, if you are a translator...we really really need you. Even if you would like to just crochet or knit little hats for newborn heart warriors, we need you too.

Please contact us at tehillasheart@gmail.com or comment on the bottom if you can think of some way to help us get this started.

Contact Us

There is a new page on this blog, just up above: Contact Us.  We have been asked many times, how people can contact us, so now there is an email address, just for the blog, that comes directly to us.  Click on the tab, to be in touch.

Tummy Time

Tehilla is enjoying tummy time and doing well.

Checkup Appointment

Today, we had our follow up appointments with Dr. Golander, our cardiologist, and Dr. Erez, our surgeon. 

Dr. Golander did an echo and said that everything looked great. He will see us again in a month. 

Then, we saw Yifat, our nurse, who weighed Tehilla. 6.360kg. She went up 160g since last week! 

We saw Dr. Erez. He checked Tehilla's scar and was happy with the recovery. He said that she can be placed on her stomach to play and can again be lifted under her arms, unless she shows signs of discomfort. We will keep getting checked by Dr. Golander and when they see enough growth of her pulmonary arteries, they will schedule the Glenn surgery. He is expecting it to be some time in the summer. 

Here is a picture of Dr. Erez:

Happy Smiles

Happy Smiles.

We are all back to normal and Tehilla ate 150cc of formula this morning. 

Shabbat Shalom! 

Reposting Inspiration

I haven't posted this on the blog, since I was pregnant with Tehilla. This is the story about Meghan Roswick.  I have drawn a lot of strength from her story, and if you are still following our story, I know you will too. Enjoy and a Shabbat Shalom to you and all of your families!

Food

Slowly, Tehilla is starting to welcome eating and not just nursing. She has taken small bottles once a day and has eaten small amounts of fruits and vegetables. 

And, then when no one was paying attention, she managed to get two fists full of macaroni and cheese.

But otherwise, wet diapers, and happy smiles. Thank G-d. 

Capes from Tiny Superheroes

Look what we got in the mail while we were in the hospital!!! The superhero capes!

The kids love them!  We'll save Tehilla's for her next surgeries. They are incredible. They are made of fleece, and fully lined. I will say this, they really made Mechal and Tzviel feel special.  I explained to them how being Tehilla's brother and sister, they were important and her helpers. That they deserved capes to show how amazing they are, just like superheroes and sidekicks.

Again, if anyone would like to go to their website and sponsor some of these capes for kids with illnesses and disabilities, here is their link: www.tinysuperheroes.com.  I can tell you first hand, that these kind of things, make a huge difference to families like ours.

Antibiotics

Our family doctor was so amazed to see us, 8 days after heart surgery.  He couldn't believe how well she was doing. I told him about how I had requested to leave the 4th floor because of what was going on. "Oh, yes.  I know the 4th floor. Better to be home."

He checked Tehilla's eye, which is clearly infected. As more of a precautionary measure, he put her on a low dose of antibiotics, as well as an antibiotic cream.

We weighed Tehilla.  She was at 6.150kg.  Which means she lost 15g in 2 days, which is absolutely nothing.  I asked to be put on a medication to boost my milk, just to help. If anything, it will relieve my stress of low milk and just that alone will bring it back.

Tehilla couldn't stop smiling at our doctor. "It is such a pleasure to see her, like this.  Thank G-d."

It Worked!

Now that we are home, we are both getting more sleep and able to relax. My milk is starting to improve. Tehilla is still adamant about only nursing. But...today, she had her first full wet diaper.

She has started to get an eye infection. Since she is only just a week after heart surgery, we are taking no chances and are taking her to our family doctor now.

Home Sweet Home

Ah! That feels better! A pretty good night's sleep makes the smiles shine brighter.

And then, there was a knock on the door. We got an amazing delivery from Ron's coworkers: a beautiful bouquet of flowers and a teddy bear three times as big as Tehilla! 

Thank you David, Milan, Yair, Dee and the rest of the team! It is so sweet!