Thursday, October 30, 2014

Heart Smiles

You can't help but smile, when you have this face looking at you.

While yesterday did not produce the results that we had been waiting and hoping for, it's smiles like these that remind us about the journey we started.This journey has had several downs but also extreme highs. Ron and I can honestly say that this year has been the most incredible year of our lives.

The truth is that we like to fool ourselves into believing that we have some kind of control over the situation. We educate ourselves, stay on top of the situation, advocate (a lot), and try to make a difference in the Israeli heart community. But at the end of the day, we are no more in control over this situation, then any other situation.

We have faith. We believe that G-d is in control. We feel very strong in our beliefs and we know that G-d has provided us with the perfect doctors and surgeons to take care of Tehilla. It's unnerving that we are going into surgery with an added risk. But we are also going into surgery with benefits.

Today, Tehilla is healthy and strong. She is not going into surgery in a critical state. She is doing well- exactly how they would like her to be. And in all other areas, she is shining.

So, that is where I will spend my energy: in smiling with Tehilla and holding strong to my beliefs.

Wednesday, October 29, 2014

Today's Appointment


Today, we had Tehilla's appointment with our cardiologist, Dr. Golander. She had an echo to check on the size of her pulmonary arteries. There has been no progress. They have not grown.

Tehilla did not have the "normal" Stage 2 surgery, the Glenn at 6 months because her pulmonary arteries were too small. Instead they replaced her Sano shunt from her Norwood surgery, with a BT shunt of 5 cm.  This was done, so that she would not outgrow her Sano shunt from her Norwood and crash. They also specifically put one of the biggest shunts to increase the pressure on her pulmonary arteries and force them to grow.

That last part has not happened. We have waited and pushed off the Glenn in the hopes that her pulmonary arteries would grow on their own. It has been 6 months since her BT shunt surgery and we can now respectively say that her pulmonary arteries are not growing. This pushes her to an "irregular" case of HLHS.

Because we have seen that her pulmonary arteries are not growing and have given a reasonable amount of time for it to happen, we can not expect that they will grow. So, there is no sense in waiting any longer. We are going ahead with the Glenn surgery with this added problem. Dr. Erez, our surgeon will open Tehilla's pulmonary arteries and put a patch on them to be the necessary size.

We are doing a heart catheter this Monday, November 3rd. There they will double check that the pressures in her heart are within the right range. As well, they will be checking to see that the branches of the pulmonary arteries, that are inside of the lungs, are the right size. We get admitted to the hospital on Sunday, where they will do blood tests and put in an IV. We then go home to sleep and come back for the catheter on Monday by 7:00am. They will keep her overnight and barring any complications, we should be released on Tuesday.

Dr. Golander drew us two diagrams. The first is just a sketch of the Glenn surgery. The second is the pulmonary arteries and the lungs. You can see the branches of the pulmonary arteries there.

Here is a video to quickly explain the Glenn:

I can't say that overall, we are feeling good about today's appointment. We are going into a heart surgery in a less than ideal situation. We have complete confidence in our surgeon and cardiologist, and will remind ourselves to think positively. 

Please have Tehilla in your prayers that all outcomes should be great. Nothing less than great. 

Tehilla bat Shoshana. 

Monday, October 27, 2014


What a night last night was! Exactly at the moment that Ron and I headed to bed, we heard Tehilla gasping for breath. Tzviel is an asthmatic with chronic croup, so we are no stranger to the sounds of croup and stridor. We quickly grabbed her and ran to our freezer and stood there, until she caught her breath. Then we wrapped a blanket around her and went outside for about 15 minutes, until her breathing didn't sound so sharp. We waited and then put her back to bed, only to repeat that episode 5 minutes later.

We couldn't get a hold of our cardiac nurse, so we called one of our PICU nurses, who is also a friend. She suggested that we go to the ER for an inhalation treatment. I am always hesitant to go the ER, for fear of exposing Tehilla to something far worse. We took Tehilla's saturation and it was ranging between 68-71. Her baseline is 74-78. For Tehilla, that's still not completely awful, as long as she is breathing regularly and there are no other signs of distress. We waited and took her saturation again. It was 75.

I sat outside with Tehilla for a little longer and then put her to bed. I then stayed up for an hour to make sure that she was okay.

Of course, Tzviel then had a croup episode. He's nearly 5 and refusing to take his daily puffer. So, it was a long night.

We went to the walk-in clinic this morning and had one of the on-call doctors check both of them. Tzviel received a stern talk about how important it was that he take his puffer. He hung his cute little head in shame and nodded obediently.

Tehilla is being put on an inhalation treatment, even though she sounds almost completely fine, as a precaution for 3 days.

On Wednesday, we have our cardiology appointment. We will find out if this will force a major delay in a catheter and surgery.

Friday, October 24, 2014

Shabbat Shalom

Tehilla  has a cold and had a very hard time sleeping last night from being so congested. We have a humidifier with some natural cold drops set up in her room and are giving her saline  nose drops. We are being vigorous in trying to keep this cold from turning into anything more.

This week is Tehilla's cardiology appointment and there is a strong feeling that she might be ready for her Glenn. So now would be a terrible time to get sick...

Here is a sweet picture of Mechal reading to Tehilla.

Have a wonderful Shabbat!

Tuesday, October 21, 2014


Tehilla is now cruising along all the furniture. She is babbling constantly and is definitely trying to get some words out.

Just before she opened her book Brown Bear, Brown Bear What Do You See? , her favorite, and found the page with the cat and said, "Meow!" Then she showed each of us and repeatedly meowed for us.

In other news, I've been asked to consult with the head nurse of the NICU at our hospital about ways they can better accommodate heart babies. I meet with her next week.

Sunday, October 19, 2014

Birthday Party

On Friday, we had a birthday party for Tehilla at a local park. Many of our family and friends came. It was a beautiful day outside, with a slight breeze. Tehilla had skipped her morning nap, so she was cranky nearly the entire party. Ron and I have such a hard time believing that she is one years old already, and that we made it to this point. It was wonderful to be able to celebrate with everyone.

This past vacation was really wonderful for us, as a family. After our pre-Yom Kippur scare, we really made all the effort to make Sukkot and Shmini Atzeret/Simchat Torah very relaxing and fun for all of us and to spend time with our friends. It was very therapeutic.

Monday, October 13, 2014

Family Fun

Today, we went to Kiftzuba, an outdoor small amusement park, not far from Beit Shemesh (and our hospital). We got there 15 minutes after they opened and spent about three and a half hours there, with absolutely no lines. It was pretty empty while we were there. When we were ready to leave, we saw that it was filling up. We were very happy that we had an early start on our day.

This place has things like bumper cars, bumper boats, huge 4 story gymboree play areas, arcades, rides, some animals, and many little toddler play areas. I think it was perfect for the range of our kids' ages.

I took Tehilla into several of the toddler areas to play. It was very strange to see the comparison between babies within her age range. One thing that we have been asked, not by our doctors, but from many of the hospital pediatricians that have checked her throughout her various visits, "Does she tire easily? Is it strenuous for her to move around?"

For many heart kids, having the limited circulation in their heart makes it harder for them to do physical activity and they do tire much more easily. We have always answered, "We're not at that stage yet. She is just starting to crawl and cruise."

Each healthy baby follows their own individual rhythm to their development and truthfully it isn't wise to compare children. We have always seen Tehilla as climbing her pattern in a steady path, without cause for concern.

Today, I saw many babies varying in age range, and they were crawling and climbing all over the place. Tehilla crawled a bit, but mainly stayed close.  A big part of it was that Tehilla was completely overwhelmed by her surroundings. But it did make me wonder- does she lack energy to be active?

Whether the answer is yes or no, with her Glenn surgery her heart circulation improves and she will gain more energy. Later, after the Fontan, again, her heart circulation will improve along with her energy levels.

But regardless, we had a great fun family day!

Sunday, October 12, 2014

All Better

We can finally say that Tehilla is completely over that virus. A virus that normally would have been gone in 3-5 days, took Tehilla 14 days to work out of her body. Thank G-d, she is finally eating nicely and has gotten her energy back. It is very hard to watch your happy, playful little baby be too tired to lift her head all day long. 

But she is back, and playful and mischevous and sweet as could be. Her newest thing is that she says, "Oh, wow." She says it about everything.

Here she is enjoying her special Sukkot breakfast of chocolate chip pancakes. Didn't you know that you're supposed to wear them?!?

Friday, October 10, 2014


Tehilla is eating. It still takes a lot of effort to convince her to eat, but we are usually successful. 

She is still very low energy. She is not really playing that much. She just wants to be held or to rest.

As coincidence would have it, Tehilla cut a whole bunch of new teeth. I can't take a picture if them, unless I hold her upside down and snap the shot.  Because that is exactly how we discovered these new teeth. We were playing with her and hung her upside down (for a split second, calm down!) and discovered two upper teeth and molars!

Assuming that they just cut the last week or so, this is without a doubt a contributing factor to her feeling miserable and maybe even refusal to eat. Let's hope it's the reason she just wants to rest, as well.

We had a really nice Sukkot. Mechal seems to have caught the flu. It just isn't fair because flu shots have just become available.  We are keeping Tehilla away, but we are nervous. 

To a healthy and enjoyable rest of Chag for everyone!

Wednesday, October 8, 2014

Happy Sukkot!

Tehilla ate a little bit more. We are making a bit of progress and remaining out of the hospital. We've stocked up on a bunch of her favorite foods and have every intention of bribing her, as much as we can.

A happy chag Sukkot to all of you!

Staying Away

Tehilla is really not eating. We are having a very hard time and trying to bribe her with juice and cookies, which I normally would never give to a baby this young. She still is not eating nicely. Probably connected to that, she isn't napping well and is very irritable.

We already called the on-call doctor, who thought she should go back to the hospital. We also spoke with our wonderful nurse, Yifat, who wasn't totally sure that we should go back to the hospital.

So, we are going out and buying all of her favorite foods and anything we can think of. I just got her to eat a little bit. For now, we are avoiding the hospital. This might just be the end of the virus playing itself out, and I really can't put her at risk to pick up anything else.

Of course, if things worsen or she shows any other bad signs, we will go back to the hospital.

Please G-d, she's regain her appetite right away. Tehilla bat Shoshana

Tuesday, October 7, 2014


Today, Tehilla got to relax at home, the whole day. No yo-yoing back and forth to the hospital. She was irritable today, and didn't eat. It started really worrying me, when I even tried to give her an Oreo cookie and she just threw it. But later, I gave her some juice and she perked up and then ate a full dinner. I really hope that she does not backslide. We'll see how she is tomorrow.

I forgot to add to my post last night, we received approval from the Ministry of Health for Tehilla to get her RSV shots! I'm so relieved that we won't have to fight for them.

Tehilla has another new "trick". She shakes her head "no", with a big mischievous grin on her face. Before we left the hospital, we bumped into Dr. Erez, our surgeon. He loved seeing how much Tehilla has grown. I told Tehilla, "Say hi to Dr. Erez." She shook her head "no" with a huge smile. Dr. Erez cracked up at that one.

Monday, October 6, 2014

Checked Out and Home

We were discharged later on in the day. The doctors came and asked to redo a blood test to make sure her white cell count was back to normal. The moment that we stepped into their "procedure room" Tehilla screamed. She kept crawling up into my arms and crying hysterically.  She is very aware and is really developing a fear for doctors and nurses.

They drew a little blood, but ultimately it was unsuccessful.  They tried again and then again. Tehilla has bruises all over her hands and feet from all of the blood tests that were taken.

I finally told them,  that I appreciate that they are trying to take every precaution,  but it's too much. I asked that they not try again.

They spoke to the senior doctor and agreed that she should just redo the blood test in a week.

We finally got home around 3:00pm.

We just went to see our family doctor and update him on what went on the past 5 days. He listened and asked all his questions. 

Then he gently asked "How prepared are both of you for the idea that she could die at any point?"

We answered in unison, "Very."

"There isn't a day that goes by that it doesn't cross our minds. When an emergency like this or a catheter or surgery come up, we think about it constantly and are very anxious about it. We know that 'tomorrow' she could die, so we live for 'today'  when we have all 3 of our kids and make sure each day is incredible."

I think he is such an incredible doctor to sensitively ask that and in a sense make sure we are prepared. 

Thank G-d,  Tehilla fought hard and recovered from this virus. As my wonderful heart mama, Rachel,  pointed out- Tehilla crashed quickly, but she also bounced back quickly.  She showed us that she is strong.

Thank G-d for everything.

Discharge Papers Soon

We are being discharged soon. In fact,  they said, "Get them out quick."

Tehilla is basically back to normal. Her rash is working it's way down her body and fading from the top. Her breathing pattern is still a bit strained but our cardiologist feels it's normal given everything that Tehilla went through and that it will pass.

We are pushing for Tehilla to get clearance to get the series of RSV shots again. Our family doctor and cardiologist agree that she should get them, especially because we are discussing surgery in about another month or so. RSV is extraordinarily dangerous for heart kids, especially so close after surgery.  It's not usual for the Ministry of Health to grant the RSV shots to kids over a year. So, all the doctors are putting in the same request to put pressure.

If we do not get the RSV shots covered, then we will pay for them privately.  We won't allow Tehilla to be at risk.

Home soon.


Tehilla has played with a medical clown twice, been serenaded by a flute player and played with a drama performer.

The doctor just came to check her. Tehilla's tests came back clean. We need to wait until after rounds to be discharged.  They're still not totally thrilled with her breathing patterns.  But overall,  she is doing well.


We are back at the hospital.  Tehilla is completely back to normal and her rash is fading. We need to wait for the doctors to do their rounds before we find out about her test results. Hopefully they will come back clean and we can stay out of the hospital. 

For now, we're hanging out and trying to keep our distance from the sickies. 

Here's Tehilla completely enraptured by the giant fish aquarium.

Sunday, October 5, 2014

Enjoying Home

We are enjoying being at home. Tehilla is still doing great and loving being at home.

Tomorrow morning we go back to check on her second set of blood test results. Hopefully, they will come back clean.

G'night everyone!

Vacation #2

The doctors just came around. The results came back from her first blood test and it showed a bacteria.  Everything about what Tehilla has gone through points to a virus. So they believe the test was contaminated in the lab. It happens. They took more tests the next day. They need the results of those tests to prove it's not bacterial. Those results will be ready tomorrow. 

Everyone believes that those tests will be clean. The problem is that they can't release us until they know for sure. Because if it is bacterial it could be fatal for Tehilla.

I suggested they send us home for another "chofesh "(vacation). It puts her at great risk to be in a sick kids ward. If there are any bad symptoms, we come right back. And we come back tomorrow for another check up and the test results.

The doctors agreed, trusting my instincts.

Soon we will receive a paper to go home.


Tehilla is doing great. The only thing she suffers from, currently, was a bad overnight nurse. The nurse did not know how to properly place the probe for the pulse ox. The pulse ox was reading 88-91 and sent the doctors into a frenzy. Tehilla's heart can not provide that much oxygen for her system so it was impossible.  Not only that, if it were true it would stress her heart out.

I insisted that they replace the probe and magically her saturation went back to 77-79.

The probe clearly moved in middle of the night, which is bound to happen when it is attached to the toe of a 1-year old.  So the pulse ox went off all night, saying her saturation was between 60-70. I was too tired to move but kept telling the nurse to fix the pulse ox.

This morning she wanted to start her on oxygen and I told her not to touch her. I got up and replaced the probe myself. Presto! Her saturation went back to 78-79.

I bit my tongue from telling her off. But I did mention it to the doctor and our cardiologist. 

Dr. Golander was just here and thrilled to see how great she is doing. He's kicking us out! Home again!!!

The consequence of Tehilla having this kind of virus is that we have to now wait minimally a month before she can have another catheter or surgery.

We have an appointment in a few weeks. They will probably decide to do a catheter again before her Glenn. So now it has been pushed off a week or two.

Saturday, October 4, 2014

Tomorrow, Maybe

Tehilla is really doing well. She has broken out in a rash (which you really can't see in the photo) from head to toe. So, I guess the initial on-call doctor was right and it was a roseolla type of virus.

We are still waiting for a doctor to come check her, but to be fair there is a serious emergency in one of the other rooms.

Here is a picture of Tehilla being extremely naughty and refusing to go to sleep. She is now fast asleep. 

The general feeling is that she will get checked tomorrow by our cardiologist, Dr. Golander, and we will be discharged.

I really want to thank all of our friends and family that jumped at the opportunity to help us. Thank you to everyone that sent messages, emails and Facebook comments.  We are very blessed to have all of you in our lives.

Yom Kippur

After having the experience that we had, so close to Yom Kippur, we were very much in the right mindset. At the same time, having that amount of intense stress and lack of sleep, it really threw us off.

As soon as we got home,  I fell right to sleep. I did not make it to shul (synagogue) at all, mainly from lack of energy.

I think overall it was a good decision to be home. We had our beds and the comfort of being in our normal surrounding.  It wasn't easy though. We were on high alert listening to Tehilla's breathing patterns constantly. She woke up about once an hour to drink. She still felt really sick and it was difficult to convince our other two kids to let us give her our full attention. 

There was one point where her color looked bad and we took her saturation.  It was at 65. We watched it climb to 71 and rechecked it 5 minutes later. It was still within that range. After feeding her, her color was better. She took a nap and she seemed to bounce back. We decided to wait and see. When she woke up, she looked pretty good,  so we decided to wait the next few hours out.

We just pulled up to the hospital now. I will update, as soon as I can.

Friday, October 3, 2014

Get Well Vacation

Tehilla was taken off oxygen. She is holding strong. She was taken off fluids because she is eating and drinking.

They let her walk around and overall she seems like she is doing well.

The feeling is that she is over the worst of it.

So...they are not discharging us, but they are allowing us a "chofesh". A vacation. They asked me how I felt about going home for the weekend.  I told them that I agree that she seems to be on the mend. I told them that unlike them I have only one patient and I know when something is wrong. We have a pulse ox at home and I can monitor her.

They asked if I would come back and break Shabbat and Yom Kippur if necessary.  Absolutely. 

We have to come back after Shabbat and spend the night probably. 


Interstage Dangers

This virus that Tehilla has is one that our entire family had. We all had a sore throat, head aches and general lousy feeling for two days. In fact, Mechal has it right now, as well. Yesterday she was with us in the ER because she had come straight from the doctor with us.

She was sitting, playing on our phones, feeling unwell and asking for soup. Her sister, Tehilla, was on oxygen and crashing fast.

This was a perfect illustration of the dangers of interstage. There are viruses that for the relatively healthy person, they feel terrible but it passes after a day or two.

For kids like Tehilla,  who has a compromised heart circulation, it could actually kill her. It's the reason we were in isolation for so long and it's the reason we might have to put ourselves back in isolation.  Just until she has her Glenn surgery. 

This was unavoidable.  Tehilla caught it from one of us. There's only so much that we can live in a bubble. 

We are lucky that we go to an excellent clinic that were on top of this and told us to keep coming back. We are lucky that they thought to do a blood test with immediate results.  We are lucky that we live so close to our fantastic hospital and that everyone sprang into action so fast and knew exactly how to help her.

It would break your heart if you knew how many heart kids catch viruses like this and don't live close enough to a hospital that specializes in pediatric cardiology and unfortunately don't make it.

We are lucky that we have such great friends and family that jumped at the opportunity to help us. And to all of you for praying for her.

With G-d's help, she will improve and we can go home soon.

Back On

Tehilla is back on oxygen. She is having trouble keeping her saturation above 66 and they keep raising her oxygen level.

She has an appetite but is also extremely tired.

Oxygen Free

What an incredible nurse! They started taking her down from oxygen and every time I lifted my head to check on Tehilla,  she was here, monitoring her.

She is now completely without oxygen and has a saturation of 75. She is still breathing a bit fast but everything looks great. 

The nurse just removed the oxygen line from her face. I told her that she has sensitive skin, so she brought something special to remove it and managed to do it and didn't wake Tehilla at all!

There is a phrase from Tehillim (Psalms)- הודו לה' כי טוב. כי לעולם חסדו. We give thanks to G-d, for He is good. His mercy is forever.

It's 3:35 am. I'm going back to sleep.

Delicately Weaning

I was sleeping but Tehilla is waking up frequently.  They are carefully weaning her down from oxygen.  She seems to be handling it okay. But it's a balancing act.

Thursday, October 2, 2014



Tehilla is sleeping restlessly.  Her saturation have been fluctuating between 78 and 60. Once it dipped to 53. She just doesn't feel well. We gave her Tylenol. 

I have to say, we have had the most amazing nurses this time. Really wonderful, thoughtful and on top of everything.  The doctors have been great too. I only had to tell one off ;-).

Hoping for a good night sleep for both of us.

Little Steps

Tehilla is improving and it is without a doubt because of all of you who are praying for her.

We are not being transferred to the PICU. She ate a ton before. Her blood tests have shown an improvement.  Her saturation is at 75 right now- with the maximum oxygen.

She is starting to fight.

She's had a rough day. She had 7 blood tests done. She keeps waving "bbye" to all the nurses and doctors. They think she is saying hi, but really she is telling them that she wants to go.

She saw a picture of a bear on the wall and said, "Roar roar roar." Then the doctor came to take more blood and she roared at him. She has all the nurses playing with her and cracking up at her personality. 

May Transfer

Tehilla is doing terribly.  She has maxed out the oxygen allowance and is ranging between 55-65 and sometimes dipping as low as 48.

They are discussing having her transferred to PICU.

Admitted Over Yom Kippur

Okay. Tehilla's white blood cell count is still severely low. Her saturation is very low and she is on oxygen.  Her chest x-ray was clear. Her blood gases test came back not good.

All in all, they believe she has a virus. They will be starting her on antibiotics just in case.

They believe that she is dehydrated.  They think that it is causing her saturation to be low and her blood gases results. She has been started on fluids.

They are admitting her to the hospital for minimally 48 hours, but possibly longer. In two hours they will redo all the tests. If they see that after all the fluids things are improving,  then they will know they are correct. 

So, we will be here over Yom Kippur. Dr. Golander has instructed me to call him if at any time I think something is wrong. 

I had a great experience with the nurse here. Before Tehilla had a face mask for oxygen. She was ripping it off, so I asked if she thought maybe putting a nasal oxygen mask would be better. "What do you think? You're her mother. You know her better." I said that I wasn't sure but maybe we should give it a try and that I really appreciate her saying that.


Tehilla had her blood and urine taken. She is breathing really quickly and her saturation dropped to 59.

They have started giving her oxygen. 

She is sleeping.

Not good

She is not doing well at all. Dr. Golander is here. Her saturation is 61. She is also breathing fast.

She is being sent for an x-ray and many many tests.

We will update when we have more information. 


Tehilla has had fever for 3 days. We wenĺ to the walk in clinic and saw an on call doctor. We did a blood test with immediate results and they found that her white blood cell count was too low. She is also still not eating. 

This indicates that she has a virus that suppresses the immune system.  There is no way to know how this will effect Tehilla and her heart.

We are being sent to the ER for further tests and observation.

Please keep Tehilla in your prayers. Tehilla bat Shoshana.

Wednesday, October 1, 2014

Cry If I Want To

This little birthday girl was up the entire night. I think she finally stayed asleep some time around 4:15am. It was a very rough night. Her fever finally broke, but she is whiny and irritable. She is not eating anything and refusing to nurse. Thank G-d, she is drinking water. I even gave her some juice last night, because she seemed a bit weak. Today, she has barely eaten anything. Again, she looked kind of weak, so I gave her a bunch of chocolate chips. Amazingly enough, she didn't say no to those! 

We are bringing her to the doctor, first thing in the morning. 

Her birthday was very meaningful, even after spending a few hours at the hospital for the speech. I got to hug, sing and dance with her. We even took a few pictures.  We will be throwing her a party in a few weeks, over Sukkot, when people have vacation. And yes, we have invited our nurse, our cardiologist and our surgeon. I'm sure that they are too busy to come, but we couldn't not invite the people that helped get us to this point. 

My Speech

This is a long long post.


Today, brought a whole new incredible experience. One that I will always treasure. I was invited by our medical team to speak at a Pediatric Cardiac Care Symposium. There were lectures all throughout the day from cardiologists and surgeons, detailing the various surgeries and procedures done on heart kids. The audience alternated, as medical staff had to go to their patients, but for my speech there were about 100 people. They comprised of doctors, surgeons, nurses, physical therapists, and possibly other appropriate medical staff. They were from Hadassah Ein Kerem, and Hadassah Har Hatzofim.

Our surgeon, Dr. Erez spoke quickly about the necessity to provide heart families with support after they have left the hospital.  Then our phenomenal nurse, Yifat, spoke about her job and role in helping heart families. I was introduced and I got up to speak. 

Here is more or less what I said with a slide show:

Hi. My name is Shoshana __________. I am  a mother to three children: Mechal, Tzviel and Tehilla. I work as a graphic designer.

I'm here to speak about Tehilla, my youngest. She has Hypoplastic Left Heart Syndrome (HLHS). This is the story about how we went from here (first picture of her from the NICU), to here (recent picture). 

This story actually starts before Tehilla's birth. The contrast of what went on before Tehilla's birth, plays a huge part in Tehilla's "success story".

When I was 15 weeks pregnant, I went for my “Skirat Mukdemet”. My entire world completely changed with the words, “I do not see 4 chambers of her heart.”

Professor Rein was unavailable so we were sent to Modiin to have an echo done. There we were given the diagnosis of HLHS. There were many words and terms thrown around, and honestly, most of it went over my head. Funny enough, I'm pretty sure I failed the 10th grade science section about the heart.

I remember the cardiologist saying, “You will have to make a choice whether to abort the pregnancy or not. Some people abort and the others throw their hands up to G-d and pray."

We went to a different hospital and met with a different doctor at week 19. The doctor refused to give us information, and when we pushed to understand, he said that we need to consider quality of life. When we asked him what that meant exactly the only answer we got was "No Sports." 

In fact, the only piece of information we were given was, that our baby had a 20% mortality rate.

We were devestated and wanted to understand more about HLHS. This was when I went online and found a facebook group called Heart Mamas. There I connected with 2,500 mothers of children with heart defects.

 While writing this speech, I actually found my original post:

"Today, we had the followup fetal echo. I was hoping that the appointment would give us some indication of what to do. I was hoping they would tell us that this baby's HLHS looked good on the spectrum and that with surgery, the baby would be okay. Even telling us that the baby didn't have a chance and that we had no choice...would have been better than this. They confirmed HLHS. The doctor spoke about the surgeries needed, but explained that even with the surgeries, this child would never have a whole heart. This child would never be "normal". That we had to consider the quality of life. That we had to consider our two other children and that our lives would revolve around this baby. And that we had to make a decision whether or not to terminate the pregnancy. We have to meet with a genetic counselor who is supposed to talk it through with us. How on earth are we supposed to make this decision? We tried so hard to get pregnant with this baby. We want this baby so badly, but we don't want this baby to suffer and not have a life. I need so much support right now. I need to hear from mamas who had HLHS diagnosed during pregnancy. I also need to hear from heart mamas that terminated. My heart is broken right now."

I received 84 responses. I received many many pictures. Pictures of HLHS kids smiling and happy- many with a notable scar on their chest. 

This really confused my husband and me. These kids look great! Was it that our daughter's HLHS was more severe or were we not getting enough information?

The more we thought about our appointment, the more confused we got. Why would the doctor say 20% mortality rate, when you could say 80% survival rate? Clearly, this was the mindset of the doctor that we saw.

We realized that we needed to go for a second opinion. We met with Professor Rein. It was a great appointment. Usually an appointment would last 10-15 minutes. Professor Rein sat with us for 45 min. My husband and I asked well over 200 questions, and Professor Rein patiently answered our questions and drew us many diagrams. 

It's important for me to mention that he did not give us a better picture, just more information. In fact, what he said was that the baby had a 45% chance of living over the age of 5, from that point in my pregnancy. He explained that her quality of life, if she lived, could be relatively normal. 

We realized that it was basically a 50/50 chance that our daughter would live, but if she did, she could have a relatively normal life. 

There was one other problem, that he saw in the echo. Her ductus in her heart was completely closed and this made her inoperable. 

We were told to come back four weeks later for another echo. We came to Hadassah and had the echo. It showed that her ductus had opened completely on it's own. We took this as a miracle and decided that we were going ahead with the pregnancy.

The rest of the pregnancy was very difficult emotionally not knowing what would happen.

On October 1, 2013, Tehilla was born via c-section. She weighed 2.800 kg and was immediately taken to the NICU. 

Tehilla had her Norwood surgery with the Sano modification two days later. 

Before Tehilla's birth, many heart mamas advised me to create a blog. It would help family and friends to keep updated and help us, so we wouldn't have to be on the phone constantly.

I started a blog when I was pregnant with Tehilla and only published it when she was born. It helped our family and friends stay up to date, but it also attracted people from all over the world. We started getting messages from Japan, Italy, Spain, Brazil, Canada, Belgium, U.S. and England. People were praying all over the world for Tehilla. They were lighting shabbat candles for her and doing acts of kindness for her. 

The blog had inspired thousands of people. But all of these people were also supporting us. They were strengthening us, during the hardest times.
I started getting messages from Jewish families with children with heart defects. Some with HLHS, some with other defects. They offered advice on how to handle the hospital stay, or just send supportive words. Today, the blog has had over 160,000 views
Tehilla slowly recovered from her Norwood surgery. During this time, I was basically living in the hospital.
It was always very encouraging when I would walk into the room, and a doctor or nurse, would immediately give me an update. 

As a parent, you really struggle watching your child recover from surgery. It is completely out of your control and there is nothing that you can do to help. 

Having these little updates and explinations really helped me to cope with the situation. 

When I was pregnant other heart mothers told about Sisters by Heart. It's an organization based in the U.S. specifically for HLHS families. They have a website that provides a lot of information on surgeries and procedures, as well as inspiring stores about children just like Tehilla.

One of the amazing things that Sisters by Heart does is send care packages. We received a huge package. Inside was a blanket that had been donated by a family that had a son with HLHS, who had unfortunately passed away. It had a pacifier that helped babies learn the sucking reflex. It had bottles, toys for my other two kids, something for my husband and I, and many more things.
Having these items with me in the PICU reminded me that other families had been through this. Even the ones that lost their kids. It reminded me that I wasn't alone.
Tehilla continued to recover nicely. She was taught to suck a pacifier and then slowly taught to bottle feed. We had some issues with her gaining weight.
Tehilla had been in the hospital for almost a month. During that time, we were visited frequently by Dr. Erez, of course, and Professor Rein. Dr. Golander would come in frequently and always made time for our questions and concerns. We quickly established a very good relationship with Dr. Golander.

Tehilla was finally allowed to go home. It was the most terrifying night for me. I stayed up and watched her sleep the whole night. I was scared that something would happen. I chatted with many heart mothers that night and was reassured by them. I finally got some sleep, a few days later.
Tehilla continued to do well and develop at home. However, we were in the ER at least once a week. 

Some times it was because her saturations were low and she was blue.

A few times, it was because her scar looked terrible.

Meanwhile, my blog had caught a lot of attention and people were really interested in Tehilla's story. It had created a network for Israeli and Jewish heart families. 

Interstage, meant staying away from the public and even our friends, to protect Tehilla from sickness. We were isolated, but, at least Tehilla was healthy.
Once day, I got a weird email. It was from a man named Neal who started an organization called Lev Leytzan, an organization of medical clowns. He asked if he could come visit us at home. At first, I thought this was very bizarre. I didn't respond for several days. But the more I thought about it, the more I realized that it would be a fun experience for my kids. I replied and we set up a day over Chanukah for him to come. 

That day arrived and there was a knock at the door. We opened it and found a clown standing there. And then another clown. And another and another. Suddenly our home was filled with about 30 clowns. There were clown noses flying around and everyone had a great time.
Tehilla continued to grow and develop nicely. When she would get sick, it would be more exasperated then a normal child and very hard on her.

With any question or problem, I would call Yifat. She would consult with Dr. Erez or Dr. Golander. I also spoke to my heart mothers frequently. 

They provided support but also answers to questions, that even our doctors couldn't answer.

An example of this was with the RSV shot. After Tehilla had her first RSV shot was very sleepy. It got to the point where we couldn't wake her up. We went to the ER. They performed all kind of tests and consulted with the cardiologist on call. They couldn't explain it. It's not supposed to be a side effect of the RSV shot. But then again, there is no normal for a baby like Tehilla.

When I got home I once again went on Heart Mamas, and got 15 responses from parents that experienced the same thing. This was very reassuring.

At 5 months old, Tehilla was supposed to have her Glenn surgery. It's the 2nd stage for HLHS children. But by the catheter, we saw that she had very small pulmonary arteries. We met with Dr. Erez and made a backup plan of a BT shunt.

In fact, that was what happened. During the surgery, Dr. Erez felt that her pulmonary arteries were too small. She had the BT shunt.

She was in the hospital for only 8 days. 

During that hospital stay we noticed that Tehilla was starting to develop a fear of doctors and nurses. In fact, this is very common and what I have learnt from speaking to thousands of heart parents, is that a large percentage of these kids later develop sensory issues as well.

I would like to make a suggestion, as a parent. If there is a task that needs to be done, that does not require medical knowledge: such as cleaning an area before doing a blood test, or removing an oxygen line, things like that- I would suggest that you ask a parent to do it. Not only will you be giving the parent something useful to do, which will make them feel like they are helping in some way, but it will limit contact with pediatric patients. 

After our last surgery, I wrote a blog post about an experience that I had. I was waiting after an appointment with Dr. Golander and saw a small baby being wheeled into the cardiology offices. I could tell by how the woman said, "Todah Rabbah" that she was an English speaker. I watched her sit uncomfortably, with a look of shock on her face. I asked her what her story was. She said, "I don't know. I just don't know. We were supposed to be discharged and then they said they heard something. Now we're here. I just don't know."
I sat and reassured her that she was in good hands and that the doctors and surgeons, who I hope she will never need, are incredible. 

I had seen this situation before and had experienced it myself. It really sunk in the point for me, that we need an organization in Israel to provide support to families of children with heart defects.

There needs to be a place to go to find support, like I have found in the past from other heart parents.

A place that parents can go that provides information. It pains me to say it, but at the time of my pregnancy with Tehilla, there was no information online about HLHS in Hebrew. If the only language that I spoke was Hebrew, than we would have terminated the pregnancy.  Yifat has been working hard to put information online, so that more is available.

My entire experience was what inspired me to start an organization called Little Lev.  The goals of Little Lev are to provide support and friendship to Israeli families with heart defects and to provide information in many different languages.

I posted on my blog, asking for people to donate their professional skills and help get a website up and running. The response was incredible. I worked with two other heart mothers on creating this website. Our website offers information and tips in English and Hebrew. We hope to expand to several other languages.

We have also started to hand out care packages to heart families. After seeing the impact it had on my family, we realized how important it is.

The main purpose for me to speak here today, was to explain what a heart family goes through. The other purpose was to tell you about Little Lev. 

I'm sure that as doctors and nurses, you understand that you are treating not just a patient but an entire family. 

By telling parents about Little Lev, by handing out our cards- you will be helping families find the support they need.

Today is Tehilla's birthday. She is one years old. Our hopes for her are that the medical world can keep up with her as she grows. She still needs a Glenn and Fontan surgery.

Thank you so much for you time and thank you to our doctors and nurses that have helped us with everything.

That was my speech. Nearly everyone in the room was crying and laughing throughout my speech. A few nurses came and hugged me and thanked me for sharing our story.

I was very nervous before me speech, but once I started talking, I calmed down. From the reaction I got, it really sunk into me, how I was representing all families of unwell children. I was the voice for all of these mothers. I don't mean this in a bad way, but when treating children is your job, I think that frequently the actual emotional needs of the family are forgotten. There is a goal in mind- help this child survive. Anything else seems trivial.

I really see how our story impacted these medical professionals. I would gladly do this again, and hope that I get the opportunity in the future.

Our nurse Yifat recorded my speech. When she sends it to me, I will try to upload it.

A Year Ago

A year ago today, I lay awake unable to sleep. Tears flowed freely from my eyes and my lips whispered prayers and promises.

A year ago today, I felt fierce kicks from within my stomach, your own way of showing me you are a fighter.

A year ago today, you were born to a family that couldn't have possibly loved you more and wanted only the opportunity to cradle you in our arms.

Today, you are alive and strong. 

Today,  your smile shines and brightens our life.

Today, you are one and every bit as perfect as we knew you would be.

Happy Birthday, baby girl.