Sunday, July 31, 2016

Dressing Up

I apologize for not updating sooner. Thank g-d, we have all been busy with good things: crafts, activities, baking and playing.

Tehilla is now 4 weeks after heart surgery. She is full of energy and sass, giggles and temper tantrums. We are still keeping her away from everyone, which is challenging but necessary.

Tehilla spends her days playing with Mechal and Tzviel, singing, playing with her toys and usually causing some sort of trouble.

Her scars are healing very nicely and she is no longer afraid of the bath at all.

Today, she kept dressing up in costumes and announcing all the places she was going and the things she needed to buy.

I'm attaching a comparison picture of Tehilla before the surgery and after.  I keep marveling at her skin tone.  It's so perfectly pink and un-muddled. You can see if you look closely that in general she is far less purple, but especially near her eyes and nose.  Her fingers were always purple and it's nice to see her pink fingers and toes now.

Tomorrow is Tehilla's cardiology appointment. She will have an echo and we will receive the results of her Holter monitor. There is a lot riding on this. The results can vary to the extremes. Please pray that we receive clear answers regarding her heart rate tomorrow.

I will update the blog throughout the day tomorrow.

Friday, July 29, 2016

Another Happy Day

Our days are filled with crafts, exploration and some baking. Somewhere in the middle of all that, I find time to work. All 3 kids are home with me and enjoying themselves.

Tehilla has been doing very well. She spends her days making us pretend food, taking care of all of her dolls, and sneaking things out of her siblings' rooms.

All in all things are mostly calm and peaceful. Thank G-d.

Wednesday, July 27, 2016

We Love Camp Sports

Yesterday, we received a very special package from Camp Sports. There were two very exciting Hello Kitty books with an extraordinary note on the back of a "No Talking or Texting for Tehilla" poster.

It says:

"Dear Balofsky Family,

Each note represents one NCSYer in Camp Sports who is not texting or talking during davening for a complete refuah shelema for Tehilla. We hopes she enjoys our notes and the books.

From NCSY Camp Sports
Family for Life"

The books are incredible and one plays songs which we have been listening to constantly thanks to a very obsessed Tehilla. The books had little post-it notes stuck throughout all the pages. The notes are little get well cards with pictures from the boys. We have counted 85 notes!  That is 85 boys that have taken this on for Tehilla.

Tehilla loved the notes. She pulled each one off and said, "Boys drew this for me! Wow. This nice. I like this one. Boys are so nice."

Camp Sports, you have touched our hearts! This was a very thoughtful present! We will be enjoying it until the batteries run out! The cards are so meaningful and will be going into the album I'm making for Tehilla of all the cards.

Your prayers are what has linked our family with all of you (and all of you, blog family). We have been blessed with such a loving and wonderful extended family.

Thank you!

Monday, July 25, 2016

All Clear

Tehilla had her vitals taken and screamed and cried.  She finally card down and we went to play in the gymboree while waiting for her appointment.

The appointment went very well. She freaked out when we entered the room but I was able to sooth her and she saw that our surgeon wasn't going to hurt her.  Dr. Erez was happy to hear how Tehilla was doing and said that the little bit of fluids that she had when discharged now sounds like it is all gone.

Because Tehilla is so active and doing so well they are not overly concerned with her heart rate right now.

Her oxygen saturation was 91!!!!!  We have never seen such a high number for her. Her heart rate was in the 70s which is still not great.

Tehilla goes home with the Holter monitor and we return it to them tomorrow. We see our cardiologist next week for an echo and to hear the results of the Holter monitor and the outcome.

The time to pray is now. Pray that her Holter comes back with clear answers.

Tehilla is now happily earing her M&Ms that she was promised.

Hooked Up

The good news is that we have filled our quota for incompetent people for the day. So it should be smooth sailing the rest of the day. Sigh.

Tehilla is all hooked up to the Holter monitor. We are hanging out in the park while we wait for Tehilla's appointment with her surgeon. 

Day Start

We are awaiting our paperwork to come through, yet again, and will be late for the Holter monitor.

We are passing time in the gymboree.

Holter Monitor Tomorrow

Today was the first real day where all three kids were home together. We have devised a schedule to get through the day, where we do an activity, do a craft and bake something every day. Today went very well.

Tehilla has repeatedly looked at me and said, "It's nice to be home. I like to be home." I think she is finally letting herself settle down. Unfortunately for Tehilla, we will be at the hospital tomorrow.

Tomorrow, we have a 9:00 am appointment at the Holter office. We will go and Tehilla will once again be hooked up to a Holter monitor and I will have to log her actions so that the cardiologists can understand the data that they will see. We also have a 12:30 pm appointment with our surgeon to check on Tehilla.

I hope that Tehilla will be able to stay calm, but we really will get to see how much of the trauma is still with her.

This is the time to pray for Tehilla. We are praying that the Holter monitor goes well and leads to clear answers for our cardiologists. We are also praying that her appointment goes smoothly and there are no causes for concern.

Tehilla bat Shoshana.

Friday, July 22, 2016

Shabbat Shalom

"I'm a princess! I'm a princess! Look at me! I'm a princess!"

3 weeks post heart surgery and she has never looked better! Thank G-d!

Shabbat Shalom, blog family!

Thursday, July 21, 2016

Goodbye and Hello

This journey has brought us many bumps and hurdles, some that were anticipated and some that we didn't see coming.

We have been blessed to have had Dr. S as our family doctor until now. There are very few people that could step into this role and do it with such sensitivity and devotion. Dr. S was by our side through 3 of Tehilla's surgeries and supported us emotionally, physically and medically. He knew when to listen and he knew when to take action. He made all of the right calls and we felt completely secure in his hands. Tehilla's journey has been a tumultuous one, with medical emergencies, common childhood illnesses, development delays and weight gain issues.

He knew to make sure that Ron and I were taking care of ourselves and saw us through the worst moments of our lives. He helped prepare us for everything that we were up against and had some of the hardest conversations with us.

More importantly, our kids adored him. Tehilla would run into his office and bat her eyelashes at him for more stickers. Our kids learned to open up to him and verbalize their own aches and pains.

Dr. S is going in a different direction and leaving the medical clinic that we are part of. Losing Dr. S is a jolting, difficult stage for us. It is effectively losing a key part of our support system.

Our family wishes Dr. S only the greatest success in everything he does! Don't worry, you won't get an awful doctor moniker. To Mrs. S: Thank you for all the late nights, weekends, holidays, early mornings and general continuous care. You all deserve a lot more family time!


Today, Tehilla met our new doctor, Dr. N. We waited outdoors instead of in the waiting room, away from all the sickies. I had spoken to Tehilla all morning about how we were meeting our new doctor and that he won't hurt her. He wants to listen to her heart and her breathing and meet her. She became anxious when she first saw Dr. N, but quickly warmed to him.

I had already met Dr. N earlier in the week, and had given him Tehilla's 200+ page medical file to read over and her latest discharge papers. He read ALL of them in preparation for Tehilla's "Getting to Know You" appointment. Together, we went through Tehilla's medical history and a run-through of her Fontan recovery. He was very attentive and you could see that Tehilla's story touched him.

He was amazed by Tehilla's development. She was extremely talkative during the appointment (which was a true sign of her being able to cope through the appointment) and was astounded to hear about all the steps we had to do to push her forward with phsyio and speech therapy.

He had a lot of positive things to say and got a good grasp for the new post-Fontan Tehilla, to set as a baseline for himself. He made sure to ask how Ron and I are coping and wanted to hear what we are doing to take care of ourselves.

After we left the appointment, to my shock and amazement, Tehilla said, "He is nice. New doctor is nice. And sweet." I'm in complete agreement. If we can't have Dr. S on the rest of our journey then Dr. N is the right fit for us.

Wednesday, July 20, 2016

Healing Splashes

If you were to show this picture to the nurses in our hospital they would accuse you of photoshopping it. It couldn't be that the child that screeched and screamed daily at each bath time, the one that could be heard from outside the department, the one that would refuse eye contact and to talk for 15 minutes after could be smiling while bathing.

Let me assure you this picture has not been tampered with whatsoever.  That is in fact, Tehilla smiling while bathing.

It took a lot to coax Tehilla into the bath. I left the water running on a very low pressure. Then I told her not to dare stick her foot in it. Well, that's all it took. One foot in. The second foot. A splash. A little more splashing. A little scrub here and there and then much more splashing.

Yes, I was drenched, as was everything else in the room. Yes, we might be responsible for a water shortage in Israel. But Tehilla was laughing and enjoying and completely forgetting to fear bath time.

Thank You, G-d, for continuously helping Tehilla to heal from her physical and psychological wounds. Another big recovery step!

Doing Well

Today's messy adventure has featured yogurt. Repeatedly.

Otherwise, she has been doing well. One thing that we are noticing is an improvement in her ability to handle warm temperatures. Before her surgery, when it was hot outside, it would take seconds for her to be drenched in sweat. Now, she is only getting mildly sweaty. This is a great sign and really wonderful to see!

Mischief and Sweetness

Last night, before settling down to sleep, I went to check on the kids, like I usually do. Upon opening Tehilla's door, I discovered that Tehilla had snuck a black marker to bed. Instead of sleeping, she colored all over her legs, hands, sheet and blanket.

Our morning activity was trying to get the marker off her skin, with only partial success.

Tehilla seems to have bounced back beautifully from surgery- both in energy but also in spirit. Today, she was very happy, sweet and playful. And naughty- there's always that mischievous twinkle in her eyes! She was caught taking apart Mechal's school supplies and trying to sneak markers. I managed to catch her in the act on camera!

Monday, July 18, 2016

Tehilla's Day

Tehilla's morning went something like this:

Wake up, demand all dolls accompany her into our bed, forgot a doll so scream about it, pat Ima's face constantly, kick Abba's tummy, demand all dolls leave the bed, no blanket, bring the blanket back, breakfast time!

And that was all before 7:00 am.

In all seriousness, she spent her day making the family pretend chocolate cake, playing with all her dolls, watching some Peppa Pig, oh right- and terrorizing the kitten. Tehilla tries to carry that poor kitten around and chases her everywhere.

Her pain lessens each day and her energy increases every day. Her color is beautifully pink and unless you see her scar peak out, you'd never guess her surgery was two weeks ago.

Thank g-d.

Sunday, July 17, 2016

Just One Person

I am one person, like you. I probably pass you on the street, or download the same books from Kindle. Our shopping lists are probably similar and my kids argue over who gets the Batman lego guy. We dance around to the song Happy by Pharrell Williams while cooking dinner, and Ron likes to sing an annoying "good morning" song to wake us all up and watch the kids slam blankets and pillows over their heads. We are just this average family.

An average family that was faced with a not-so-average health problem with our little daughter. So, I blog about it. Sometimes I am good about blogging once or twice a week and sometimes, I manage to get a blog post in after a week and a half. Of course, when Tehilla is faced with a hospital stay or a procedure, I blog around 3 times a day.

When I blog, I image that I am trying to explain the situation to my mother or my aunt or one of my friends. There was a point early on in my pregnancy, where I was updating 4 sets of friends, my parents, Ron's parents, my siblings, and Ron's siblings. All together I was repeating the same conversation 10 times over. Blogging became the means to having the same conversation with thousands of people in one shot.

Excuse me while I once again express how blown away we are with how far this blog has reached. We have messages coming to us from Israel, Canada, USA, England, Scotland, Australia, and Indonesia. The emails, blog comments, Facebook comments, messages mean so much to us.

While Tehilla was in surgery, I posted this status on Facebook and it couldn't be more true:

"Imagine for a moment that you are in the most terrifying experience of your life, but thousands of people are surrounding you and hugging you, holding you up and praying on your behalf.

That is what is happening for us right now. We have never felt so strong as we do right now. There are no words to explain how blessed we truly are. Even though our daughter is in open heart surgery right now. We are beyond blessed.
I truly love all of you."

This blog has created an incredible force of support for our family and has seen us through the worst moments of our life. You have seen us through some of the worst moments of our life. And whether you write to us and tell us what you have done for Tehilla or not, you have become part of our family and part of our journey. It has all come down to the individual person that has connected with our story and privately or publicly wants to do something- anything- for Tehilla.

There is a group of people that I have to mention that have really touched our hearts. These are the staff members of YU High School and the staff members of Camp Sports in Baltimore. They are using Tehilla's story to help teach high school boys the power of prayer. They are connecting them to our story and having them restrain from talking or texting during prayer. These teenage boys feel passionately about helping little Tehilla and have worked hard to get Tehilla's name out.

Boys- you are incredible. I was sent a video of what you are doing in camp for Tehilla and I couldn't help but cry. You don't yet fully know the power of your prayers and how it strengthens us. Please know you may all believe that you are just one person- but it really takes just one person to make the difference.

There is no doubt in my mind that these prayers coming from around the globe are what gives Tehilla super-human power. Tehilla is just two weeks after major heart surgery, and today she chased our kitten around the house and tried to draw on her with a marker. No worries, the kitten successfully got away. But two weeks! Two weeks and she is running around!

We thank G-d over and over for allowing us to watch miracles happen through our daughter and allowing her to live up to her name- Praise.

Here is the link to the video of Camp Sports:

We would love to hear where people are connecting to this blog from. Please comment on this post with which city and country you are praying from. 

Adjusting Back

It makes no sense that we have slept in our rooms, since our move 10 months ago, or our beds for years- but each morning since we have come home, I wake up and have no idea where I am. I can only assume it's the same for Tehilla.

Each morning, I wake up with a start, confused by my surroundings and jump out of bed to get dressed before the doctors rounds. I'm confused by the quiet and by the walls and it takes a minute to remember that we are home.

Tehilla startles when something or someone suddenly approaches. She is terrified of baths and getting dressed.

But she is loving regular food and not hospital food, loving playing with toys and her siblings and over the moon about being home.

We will slowly help her adjust back and I am looking into getting her some music therapy. Her room has her amazing balloons and her bed is filled with her dolls. We received a package from Carolyn with a Hello Kitty backpack and now she won't walk two feet without it.

All of the amazing cards and pictures that were made for her, I will be putting in an album for her to look at.

Slowly, we will both adjust back to normal life.

Friday, July 15, 2016

Happy Home

We all woke up peacefully. Tehilla went to play with Tzviel and Mechal. Everyone ate breakfast and got dressed. It was just a wonderfully calm morning.

Our friends and family prepared food for us for Shabbat, so we just enjoyed a calm family day at home.

We are excited to be spending Shabbat together. Much love to you, blog family!

Thursday, July 14, 2016

Home is Where the Heart is

We came home to many hugs and kisses. There were bags in Tehilla's room filled with pictures from friends and presents. Tehilla enjoyed showing Tzviel and Mechal all her special presents she had in the hospital.

We ate dinner together, bathed and got in pajamas and then we all sat down for a family movie night. It was what all 5 of us needed.

Tehilla is now sleeping in her own bed, surrounded by her dolls, happy and peaceful. She seems to be sleeping more soundly than in the hospital.

We are blessed beyond measure to have had so much family and friends and blog family surrounding us and pouring love into us. 

We are home, at long last, post-Fontan. It is such an incredible feat.

We must keep Tehilla sick free for awhile, so we will be isolating ourselves for a month.

We plan on celebrating a Mesibat Hodaya- a party of thanksgiving to G-d. It will be at the end of August. Blog family- you are all invited. We haven't worked out the details yet, but will update the blog when we do.

For now, we are enjoying the calm, quiet, stress free and very happy surroundings. Good night, my dear blog family!

More Positive Outlook

Tehilla's echo was excellent! Her heart function was great, her pressures looked good and everything looked really well. Even better than before her surgery! (I expect that you are clapping!)

Clinically speaking (meaning how she appears), you would have a hard time figuring out that she just had major heart surgery. She is running, jumping, laughing, playing and already getting into trouble. She is eating, drinking, pooping, peeing, sleeping, crying, and applying nail polish. She looks fine!

They are not happy with her heart beat. It's low even when she is awake and playing and it's low when she is sleeping. It's too low. Her heart skipped not once but twice and that concerns them.

They tore our cardiologist away from his son's bar-mitzvah (Mazal Tov!) to get his opinion. He felt that it's too early to know enough and we are far away from a pacemaker.  There is still a chance that this is post-op craziness and that everything will right itself. Especially because she is doing so well. (Another applause is in order here.)

They are sending us home (Yay!!!!!) with a pulse ox monitor to monitor her at night, just in case. They want her to do the holter in 2 weeks again. And in 3 weeks to come back for an echo and to see our cardiologist.

But we are going home!!!! Home. Home. I can't believe it. We have been at the hospital for 12 days. Our Tehilla survived another heart surgery and is going to sleep in her own bed tonight. I can't stop the tears from rolling down my face.

Your job, blog family, is to cheer us on home and then spend the next two weeks praying and praying and telling your friends to pray- that the holter in two weeks shows a big improvement. 


Not Good Results

We are waiting to go for an echo. We just spoke with Professor Rein, the head of pediatric cardiology, and Dr. Tashma, another cardiologist. They have the results of Tehilla's holter monitor.

The results were not good. Tehilla's heart remained mostly in the 40s most of the night. In addition, it seems that her heart skipped a beat at one point. The fact that her heart rate is so low when she sleeps, could be fine. But not that her heart missed a beat.

They don't have any clear answers right now, but it's worrisome. Our cardiologist comes back next week and they will talk to him and our surgeon. They want to redo the holter monitor in two weeks to rule out any randomness because she is post-op.

They are discussing the possibility of putting in a pacemaker and keeping it on standby, should her heart stop. This means another surgery.

Right now, everyone is processing the information and nothing is conclusive. We will do an echo now and probably still be sent home.

We are very much not out of the woods and Tehilla could really use prayers.

Mama Bear

There was a Mama Bear siting today, directed at our surgical team. Residents and students alike went running for cover...

In all seriousness, when the surgical team came for ealy morning rounds, I told them how angry I was that no one pushed to get the results but also that no one had the basic decency to come and update us and instead left us worried for hours.

After some back and forth the attending surgeon felt terrible and apologized for not handling the situation appropriately. He assured me that something like that would not happen again. 

The team has also weighed the risks of all situations and realizes the chances of Tehilla catching something while hospitalized are far greater than the miniscule chance that something is seriously wrong. We are still waiting for the results from the holter monitor, but they have started the process of discharging us!

Tehilla just went for an xray and we are waiting for an echo. Discharge papers will be written up. Hurray! We are going home!

Wednesday, July 13, 2016

Seeing Red Tape

I've spent the past two and a half hours trying to calm down from the frustration I experienced.

We waited ALL day for those results. And ALL yesterday. Meanwhile, I've been working really hard to keep a recovering toddler with increasing energy busy and away from a hospital full of sick people. In fact, today, we played at the park and a mother with a son younger than Tehilla came and joined us. The boy seemed healthy, so I assumed that they were visiting someone.  He played quite close to Tehilla. Then, the mother answered a call and I heard her say, "Yeah, we need to head back in a minute because they need to do another inhalation treatment." I grabbed Tehilla and walked quickly away.

We have also had no choice but to go to the mall a few times. It's crazy because when we get home, she needs to be secluded from people for a month post-op. Yet, now that Tehilla's surgery is over, she is surrounded by the biggest dangers for her post-op.

So, in a giant case of You-have-got-to-be-kidding-me- the results of Tehilla's holter monitor can only be released to our cardiologist, who is away for the rest of the week. And because our surgeon got called into an emergency surgery, he couldn't push for it to be released to him.

And....basically, a ridiculous amount of red tape and people dropping the ball equals no results. After I got very upset and told our cardiac nurse how frustrated I am, they promised that the results would be retrieved tomorrow.

(Doreen, if you are reading this- then I love you and again apologize that you had to hear all my complaints and got caught in the middle of everything.)

Music Therapy

Tehilla just had a very successful session of music therapy where they worked on her fears. She enjoyed playing with the instruments and started to open up. It was very nice to see.

We are still waiting to hear about the results from the holter monitor.

New Day

Tehilla gad a very good night. She slept well and didn't stir too much.

It's a new day and we are waiting for results from the holter monitor to determine what the next course of action is.

Please keep Tehilla in your prayers for clear answers.

Sweet Quiet Dreams

We spent the afternoon at the park, blowing some bubbles and spilling the rest, while enjoying the warm summer breeze.

When we came back to our room, the hospital dinner had been left on Tehilla's bed. She looked at it, and in her best teenager impression, rolled her eyes and said, "Not again! I don't like this. It's not good."

I tried not to laugh, but she really wasn't wrong. So we went to go get some pasta and salad for dinner. She was much happier.

I asked that Tehilla be given some pain medication and antihistamine before bed again, that way she might have a decent night.

We were surprised by our blog friend Sara Gita who brought Tehilla a Hello Kitty white board. That was a lot of fun and Tehilla had a great time drawing with her.

Tehilla is now sleeping but seems unsettled. Her oxygen saturation dropped before but has now gone back and her heart rate is once again low.

Yesterday night, after the incident with Tehilla's heart rate, the nurse and I were talking next to Tehilla while she was sleeping. The nurse asked if it was okay to hook her up to the blood pressure cuff for the night, to monitor her because of her heart rate. I said yes and thought it was a good idea.

In her "sleep", Tehilla started doing that Israeli kid shoulder shrug which translates to "I don't wanna". We thought it was funny at the time, but today my cardiac nurse explained that Tehilla did that because she is not allowing herself to fully sleep. She is staying on alert because of the trauma she has experienced.

Overall, Tehilla is doing well. Infrequently I find Tehilla retreating into herself.  For the most part, she is talking and in high spirits. Every now and then, something sets her off and she won't talk for awhile. She doesn't scream when doctors come to her room anymore but she cries if they try to touch her. She has warmed to a few nurses.

Once we get Tehilla home, she should be able to slowly put a lot of this behind her and we will help her with it.

Here's to hoping for a sweet, quiet and uneventful night!

Tuesday, July 12, 2016

Hanging Out

Tehilla and I took a nap, bought some soup for lunch and went for a walk. We met our cardiologist, Dr. Golander, who loved seeing Tehilla up and about. He is the only doctor that does not elicit screaming and crying from Tehilla.

We then went and got some pain killers because Tehilla said her chest was hurting. After a nice walk, we went to the gymboree. Tehilla jumped around and pretended to drive to the store to buy snacks and fruits.

Dr. Golander passed us again and was amused watching Tehilla jump around. He said that she is doing so well. He said that the results for the holter monitor don't seem to be in yet and probably won't be in until tomorrow. He said if it wasn't for this heart rate problem, we would have been home already.

He is very happy that the low heart rate happened on the holter monitor last night. They will analyse the data and make sure that there is nothing wrong with her heart and then decide whether or not to intervene in any way. As long as nothing serious comes out of the results, we are going home!

So pray for clear answers from the holter monitor!

9 Days Post-Op

I'm just going to leave this picture here. 9 days post major open heart surgery.

Awaiting Results

Tehilla slept fairly well. She disconnected her holter monitor wires by herself 3 hours too early. We are very hopeful that she hasn't ruined the data and that we don't need to repeat the test.

We played this morning with her new My Little Pony (Thanks Matt and Luli!) and now are playing at the park.

Tehilla is no longer hooked up or connected to anything. It appears that all the fluid has gone down. She will go for an xray and echo possibly tomorrow.

Heart Rates

Tehilla is FINALLY getting a good night's sleep. Her monitor started going off that her heart rate was dropping rapidly. 

It went as low as 41. Our nurse called the doctor, who came and repeated that her vitals are stable and that means she is okay. This is exactly the reason why we are doing the holter monitor.

The nurse and I were talking and decided that Tehilla should wear the blood pressure cuff while sleeping, so that can get monitored, as well. I guess Tehilla was really not sleeping deeply at all, because we hadn't even touched her and she started swatting us.

I'm heading to bed now and hoping for a quiet rest of the night.

Monday, July 11, 2016

Exhausting Day

As it turns out, post-surgery toddlers who get next to no sleep can be little tyrants.

Tehilla woke up from her nap screaming hysterically in pain. We gave her pain medication but it took time to kick in and she was screeching for a half an hour. When she finally calmed down, anything that she could reach was thrown at me or the nurses. She was in the worst mood and the only way I got her to calm down was to watch some Peppa Pig.

During this time, she disconnected her holter monitor wire. We only realized an hour later and it was quickly reconnected.

Once she had been calm for awhile, I gave her a snack and managed to convince her to go outside for some fresh air. We blew bubbles and searched for cats. She really wanted to play in the park but she realized quickly that it was beyond her limitations. We still walked around and her energy has definitely built up to allow her more activity.

We came inside and headed to the gymboree. She played there for awhile and then we went back to our room. Her exhaustion overwhelmed her and she became difficult again. We played a little with some toys and then she ate dinner. She got angry that I offered her a drink and threw a meatball at me.

She started getting pains again. We forcefully took pain medication again and then got ready for bed.

While I was putting things away, she covered herself with her blanket. We sang Shema. I turned to get something and turned back to find her fast asleep.

It was an exhausting day. I'm very hopeful that she will get a decent night's sleep. She took the pain medication and also took the antihistamine.

At one point, she picked her shirt up to look at her scabs and scars. All she saw was Hello Kitty bandaids. She thought for a minute and then put her shirt down. It looks like that helped her.

Holtor Tracking

Tehilla had a busy morning. First, our surgeon came to check on her. He approved her IV being removed. I explained that Tehilla was up most of the night scratching her scabs and scars. I asked that she be allowed to take Fenistil, an antihistamine, which he agreed with.

I also asked that she be allowed bandaids over her scabs to cover them up, since she is very distressed by the marks.  He said as long as they weren't completely closed and open a bit, it was fine.

We were called shortly after for the holter monitor. We had such a nice lady who really worked with Tehilla. She saw how frightened she was so she explained the holtor monitor to her by using her doll. It really helped to calm Tehilla and she was much more cooperative.

I have to track any activity that Tehilla does and the times, to help with the analysis of the data.

Next we went back to our room and Doreen, our cardiac nurse, removed the top and bottom clip of the sutures on Tehilla's scar.

We then went to the mall and found Hello Kitty bandaids! We walked around and then came back to our room. Tehilla ate lunch and then I put the bandaids on. Tehilla was much happier seeing them and I think this might really help.

Now she is napping- which I'm going to take advantage of.



Tehilla was up most of the night. She was itching her scabs and crying about having them. She was also just not settled.

We are going to ask about putting bandaids with pictures on the scars and scabs to hide them for now.  They are supposed to be open to the air.

We are waiting to be called for the holtor monitor  to be put on. In the mean time, we are playing in the playroom on our floor.

Sunday, July 10, 2016

The World

Once upon a time, an absolutely ordinary family found out the most gut wrenching, terrifying news about their fetus. They didn't know if they would be able to carry the baby to term and if they would ever get to hold their little girl in their arms.

They started a little blog so everyone could stay updated, on that 45% chance that their baby would make it.

Fast track three years later, a close family friend wanders into a candy store in Tel Aviv, to pick something up. She turns to the store owner, and asks that he pray for a little girl with half a heart, Tehilla bat Shoshana, as she recovers from her fourth heart surgery.

His response: Are you kidding? I've been praying for her non-stop. We all are. This whole country knows about her and are praying.

Our blog family is huge and worldwide. You have all played a crucial role in our heart journey. Thank you from the bottom of our family's four and a half hearts.

No New Tube

Tehilla enjoyed a morning at the gymboree and then a lunch of pizza. She tired herself out and took a nap.

One of the surgeons on the team came in to check on her. He revealed that her xray from this morning showed next to no fluids on Tehilla's left side. She does not need a new chest tube! What a huge relief!

He said they are watching the fluid on her right side since removing the chest tube on Shabbat. So far it looks good. They will do another xray in another few days to be sure!

Lately, Tehilla has been upset by the scars on her stomach from all the tubes.  It's very distressing to her and she says they are not nice and disgusting. I'm trying to talk her through it, but it is a hard thing for a kid to cope with. Her chest scar is still covered up, so she hasn't taken much notice yet.

Right now, we are enjoying the beautiful gardens outside and loving the fresh air.

24 Hour Holter Monitor

We are blessed to have the best cardiologist who always makes time to talk and explain to us anything and everything. 

Dr. Golander was thrilled to see Tehilla walking around and looking great. We talked about Tehilla's heart rate. He explained that her body is adjusting to the new circulatory system that she has. It's not shocking that this happened.

What he is happy about is that her body is stable while her heart rate is bouncing around. If her other vitals were fluctuating or she wasn't eating, drinking or being active then there would be cause for concern. But she is the complete opposite.  She is doing great! So, we want to be thorough and make sure that we aren't missing anything, but not overly concerned.

She will have more blood tests done and a Holter monitor has been ordered for tomorrow morning. She will wear a Holter monitor for 24 hours that will monitor her heart rate and blood pressure. It will see record her readings while active, eating,  sleeping and everything in between to get a full picture.

As long as there are no setbacks, we have been told we will be coming home this week. In time for next weekend. Of course, we have to see how things go, so we don't know any specifics right now.


I woke this morning to see our night nurse lifting Tehilla out of bed from under her arms. This is absolutely forbidden for 6-7 weeks post heart surgery, as it puts pressure on the incision and is quite painful. Tehilla immediately started crying and I jumped out of bed and started shouting at her.

The nurse told me I didn't know what I was talking about and that I should rely on her experience as a nurse. I told her that she should ask the cardiologists and PICU nurses and she will see how awful it is what she did.

I held Tehilla while she cried from the pain and when she settled, I went over to the nurse and apologized for shouting at her. She said, "It's okay, you're under pressure but there's nothing wrong with holding her like that." I said, " I apologize for shouting, but not for what I said.  On this matter, you are incorrect and must look into this immediately. It's unacceptable that you don't know this."

So our morning did not start off well. 

Apparently, Tehilla's heart rate went down to 46 last night and was between 46 and 52 all night. Her heart rate until this problem has been in the 90s and 100s. The doctors were made aware and will be coming this morning to further understand what is going on.

Sinus Bradycardia

Tehilla's blood tests came back with very good results. What she has is sinus bradycardia- which is just the medical term for an abnormally low heart rate.

Because all of Tehilla's vitals ate fine and uneffected, the doctors feel calm enough to further look into it in the morning.

Waiting on Blood Tests

Tehilla was checked and had blood drawn for tests. She then had an EKG. Her heart rate went down to 54 and now goes between 58-66.

None of her other vitals have been effected by her low heart rate. They are waiting for the blood test results to provide answers.

Saturday, July 9, 2016

Heart Rate Unsteady

Tehilla's heart rate just dropped dangerously low. A PICU doctor is coming immediately to check her. Please pray.

Healing Shabbat

Tehilla and I had a very nice Shabbat with Tito (uncle) Chaim.

Tehilla's oxygen saturation started stabilizing more and more until they decided to start weaning her down off oxygen.

This afternoon, our surgeon came to check on Tehilla and saw that her chest tube was not draining that much anymore and it could come out. He also removed her pacing wires which they had kept in as a precautionary measure because her heart rate was unstable at the beginning.

Once her chest tube was removed, Tehilla slept and woke up in the best mood. We weaned her completely off oxygen with a saturation of 82.

We took her to the gymboree. At the beginning, she was a bit wobbly, but 5 minutes later she was running around and cautiously climbing. She was back to her old self.

Her pain medication wore off and that made her oxygen drop. We are now waiting for the new medication to kick in.

Tomorrow morning, she is going for an xray to check on the fluid on her left side. Please pray that it has gone down and she does not need a new chest tube.

All that she has on her right now is an IV that we are protecting like gold.

Things are going so well for her, thank G-d. Seeing her climbing all over the gymboree just 7 days post-heart surgery was the most amazing thing. This Shabbat healed her leaps and bounds- literally.

Friday, July 8, 2016

Shabbat Shalom

Shabbat Shalom from our hospital room to all of our blog family! Tehilla is all dressed and ready in her finest Hello Kitty wear (Thank you, Rita!).

Outdoor Activities

We went to the park and blew bubbles, looked for cats and walked around enjoying the fresh air. Tehilla couldn't handle walking around, so she stayed in the stroller.

We came back to our room and were seen by some doctors and then took a bath. 

We were then visited by Tzviel and Mechal, and Bubby and Zaidy. Tehilla really enjoyed that and was sad to see them go. Now she is napping.

I haven't explained enough about where Tehilla is at medically. Tehilla had the Fontan surgery with a fenestration, which is a hole made to allow the mixing of bloods within the heart. Sometime in the future, through a heart catheter, they will close it.

She is currently on oxygen because her oxygen saturation is too low. It's low because she has fluids that she needs to cough out of her lungs. She has been coughing and getting there but still has more to go.

A decision has not been made yet regarding another chest tube. She still is 1 kg heavier than she was before the surgery, which is because of fluids.  Her x-ray showed some fluids on her left side that they are hoping will work themselves out without another chest tube.

Breakfast of Princesses

Tehilla did not sleep well last night. She was up several times because she had pain. Her pain is not being managed very well. Our evening nurse was possibly raised by monsters, so there was not a whole lot that I could do.

This morning she got to have a breakfast of princess with a Hello Kitty placemat, princess plates and pink napkins (thank you, Alisa!). I think we are starting to develop a reputation, but I honestly couldn't care less. All of these things have helped keep Tehilla calm and happier in a very difficult situation.

Tehilla just went for a chest x-ray and now we are heading to the park to blow bubbles.

Thursday, July 7, 2016

Gymboree Time

After Tehilla and I both took naps, we both felt better and ready to take on our new living arrangement. First we ate some dinner and watched some Peppa Pig.

Then we decided to go for another walk. Her Tito (Uncle) Chaim came from the IDF army for a visit and this brought Tehilla to life. She played with him endlessly. We went for another walk and rode the see-through elevators up and down. 

We got off at the entrance floor where there are two large gymborees. She asked to come out of the stroller and go inside. We were hesitant but since she hasn't been active and wouldn't put any weight on her legs, we thought this could be the push she needs.

Very carefully we removed her and the oxygen tank from the stroller. She was very unsteady at first. We supported her and carried the oxygen tank through the gymboree. She was so happy!

She got stronger and more steady and needed less and less support. But obviously after only 4 days post heart surgery, she became tired. We quickly moved her back to the stroller and walked some more. 

We came back to her bed and Tito (uncle) Chaim had a balloon fight with her. It had her using her arms and moving around a lot. Tito Chaim is our new physical therapy program.

Not only has he helped with her movement but he has brought her spirits up to the point where she didn't freak out when the nurse came to take her vitals. 

Our surgeon also stopped by to check on things. He mentioned that they are not sure yet that she needs another chest tube, so they are watching and waiting. This would be a very good thing to specifically pray for. That her fluids drain and she needs no additional tubes. 

Thank g-d, we are moving in the right direction and really just focusing on moving progress forward. 


Tehilla had to be bribed to smile fir this picture. We both had a hard time with this adjustment.

Our surgeon made it clear that we are staying in the big noisy, public awful room until Sunday minimally.

We are on our first walk to get away.


Oy. We are here. On Floor 4. With no quiet, no privacy and just general frustration.

Tehilla and I talked about it and we decided that she is going to get better fast.

Currently, Tehilla is hooked up to oxygen and we didn't get a clear answer about getting an oxygen balloon so we can move around. So we are stuck here.

We are going to make the best of the situation. Somehow.

New Drain

This morning, Tehilla is happy and playful. She is eating and drinking nicely and freaking out when any doctor comes by. The nurses she is starting to get a bit calmer with.

Dr. Erez, our surgeon, came by. He sees that Tehilla is starting to build up fluids on her left side. They will be putting in a chest tube again on that side. This will not change us moving down to Floor 4. It will however extend our stay on Floor 4.

We have packed up for moving floors. I had to take down all the beautiful pictures. As soon as we get a proper room, I will put then back up.

4:30 am Naughtiness

At 4:30 am, the nurse heard Tehilla whining and walked in to find that Tehilla had ripped out her ONLY good IV and had blood dripping all over her dolls, blanket, pillow, nightgown, bed- basically everywhere- and was spreading it around.

They came and woke me immediately and we had to clean everything up to a very miserable Tehilla crying and yelling, "Leave me alone!"

Thank g-d, all the medication that she is currently taking she can now take by mouth. They will wait until the morning to put in another IV.

She was very sad about all of her stuff being taken away for laundry. All except for her new Hello Kitty. Luckily, I still have quite a lot of goodies waiting. I surprised her with a yellow shirt with a pink flamingo that matches her flip-flops (Thank you, Rita!) And a penguin doll (Thank you, Eleanore!) to which she said, "It's lovely! My penguin!"

Now, she has fallen back to sleep and I will do the same!

Wednesday, July 6, 2016

Stepping Down

I've got great but awful news. Absolutely great, but "oh my G-d, not this again" news.

We are going to the step-down unit tomorrow morning. We are leaving the PICU and moving to floor 4 Post Surgery ward.

It's great, because it's a huge step in recovery and in getting home eventually. It's G-d awful because it is the most awful place to be. We will be put in a room with 8 other families that are recovering from all different kinds of surgery. It is noisy, extremely not private and the nurses are rougher.

It's kind of like trying to recover from surgery while out-running an alligator.

So...we have a lot of experience and what has worked is finding other areas to go to in the hospital that are quiet and private. Tehilla will be allowed to move and I will put her in the stroller and go for walks.

We will survive this. There are no guarantees of how long we will be on Floor 4 because Tehilla still has one chest tube in. But we won't be in that big room for the whole time. At some point we will get a regular hospital room on that floor.

Tomorrow morning. Here we go...

PICU of Dreams

If you were to enter Tehilla's PICU room right now, you would find it challenging to find the medical equipment. This is the story of how today brought endless smiles to our brave heart princess.

It started with Tehilla's Abuelo visiting and bringing her a magnetic sketching toy and an enormous Hello Kitty balloon bouquet.  Tehilla immediately started playing and even starting using her arms more and moving around.

Next, Aunty Sarah gave her two presents. One was a kaleidoscope and the other was princess jewelry and crown. Tehilla was so happy getting dressed up.

The hospital staff couldn't get over the smiling princess in the hospital bed. Aunty Sarah also brought sushi for us. Tehilla immediately asked for some and we got the all clear, matched with many laughs, to give her sushi.

20 minutes later, a delivery man came with an even larger Hello Kitty balloon bouquet, with a Hello Kitty doll on top from Amy and Jonathan!

The doctors and nurses were so stunned and couldn't stop joking about the Hello Kitty palace that we have created in the PICU.

Thank you for everything that everyone made, sent, did, wrote and contributed in any way. Tehilla's spirits are being lifted and her road to recovery is going more smoothly because of it.