Sunday, December 25, 2016

Chanukah Night 1

Chanukah is one of my favorite holidays!

Here we go- Chanukah Night 1!



Thursday, December 22, 2016

Miracles Everywhere



 This journey that we are on fills our life with days of extreme contrasts. There are days that are so normal, so perfectly ordinary, that one could forget. We don't- but we could. Then there are days that we are reminded of how fragile our daughter's life is, and they are anything but ordinary. We often have to go from one adrenaline rushed moment to the next, with often just a few seconds in between.

A great example of this would be last night. Tehilla was all tucked into bed and should have been sleeping. Instead she was reading books and wrapping all of her little dollies in blankets. I was downstairs working, when I heard her little high pitch voice shout down, "Ima, come! Come here, Ima! I don't feel well. My chest hurts." Is bolted the right word? Maybe "ran like a lunatic, taking three stairs at a time" is more precise...

In any event, I achieved a world record of heart palpitations and speed racing and rushed into her room and calmly said, "Your chest hurts? Where? Show me."

To which she pointed to her lower stomach. "Your tummy? That's your tummy. Does your tummy hurt or your chest?"

She giggled and said, "Oh yeah! My tummy. Silly, Lulu. Not my chest! My tummy!"

Breath in. Breath out. Breath in. Breath out. Let heart rate return to normal. Stop mentally preparing a hospital bag. Deep breaths.

"So, your tummy hurts. Is it because you ate your sufganiya (donut) too fast? Or because you took some of Tzviel's candy from his birthday baggy?"

This juxtaposition is our normal and is probably what made me so teary eyed at Tehilla's school Chanukah party. There she was- in her floofy yellow dress that she insists on wearing constantly, with her little black shoes with kitties on them, singing songs with her friends about miracles. Our healthy little miracle singing about miracles.

Thank G-d for our little sweet miracle.






video

Sunday, December 18, 2016

Big Girl Bed

I has to post these pictures immediately. Another incredible milestone for our princess heart warrior.

During the recovery of Tehilla's Fontan surgery, Tehilla would describe how she wanted her room to be decorated. As you can already guess, she asked for pink and sparkly. We have been slowly working on her pink room with one gold polka dotted wall. There are still minor touches to finish- but the biggest change was finally delivered tonight: her big girl bed.

She couldn't fall asleep in anticipation of the bed's arrival. Here she is completely in love with her new bed.

We are so blessed to be at this point. Thank G-d.

Sunday, December 11, 2016

Little Sickie



Sometimes, this is what a sick day looks like. It's not what a sick day used to look like. Nope. A sick day did not have pink tinged skin with rosy cheeks. It did not have beautifully pink hands...And it definitely did not involve being out and about and getting pink ice cream with sprinkles. Heck, we were lucky if we were out of the hospital.

Tehilla had strept last week and now has some kind of weird end of illnesses sickness. Tzviel had it last week (Yes, it's been a blast around here!), so we aren't overly concerned. And since I had some urgent work business, I had no choice but to take this little sickie along. She only threw 6 temper tantrums over pink sunglasses that she wanted, pink boots that didn't exhist, pink ice cream which I allowed because she deserved it, pink sunglasses again, pink sunglasses once more and I don't even know what the last temper tantrum was about.

These should only be my complaints. This is just a reminder of how blessed we truly are. G-d willing, this will pass in a few days. Thank G-d.

Monday, December 5, 2016

Disability Assessment

Until now, Tehilla has been listed as 100% disabled by Bituach Leumi (Social Security). This has given Tehilla different benefits which ease all of our lives and would greatly benefit her in the future. For the first time, someone somewhere decided that our lives were boring and it would be so much fun to call us in for a "va'adah" (assessment meeting).

When you spend all of your energy focusing your attention on the positive side, on just how wonderful a 3 year old, who has endured as much as Tehilla has, is doing: on her strengths and her miraculous life...it feels pretty nasty to have to go into a meeting and describe how horrible your child is doing. You are asked to focus on all the ways in which your child, in fact, is lagging and not actually keeping up, all of her weaknesses and challenges. This big gray cloud of negativity just hung over Ron's and my head, as we sat and weeded out all of the key points that needed to be made on just how much Tehilla is not excelling.

Today was that meeting and I was very anxious about it. Well, not to fear, they only found possibly the most unfriendly pediatrician to do the assessment. They basically took Oscar the Grouch and just removed all of his feelings. Oh and made him late, so he was intensely impatient. Seriously. Is that where they send doctors after their expiration date?

Well, I did my best, but he really frightened the Mama Bear out of me and it didn't help that Tehilla was hyper and super cute and jumping around. We get the results within the next month, so let's hope that Tehilla's paperwork speaks for itself.

Just another day in our heart journey.

Sunday, December 4, 2016

Heartiversary of Miracles

It was two years ago, leading up to this day, that we were sat down by Tehilla's cardiac team. Her pulmonary arteries were not growing, she was in heart failure, and we had run out of time. She had already been through 2 open heart surgeries and 2 heart catheters. She was overdue for her Glenn surgery by 8 months. But we had run out of time.

It was two years ago, that we were explained that while the chances of success were very low, the only option was to try to do the Glenn surgery while putting a patch on Tehilla's pulmonary arteries. And by the chances of success, what I am actually saying was her chance of survival. We were explained as gently and as sensitively as possible, that Tehilla would not survive the surgery.

It was two years ago, that our sweet doctor sat us down in his office and tried to prepare us for Tehilla's death. He tried in the best way that he could to make sure that we were completely aware of what was more than likely going to happen on December 4, 2014.

It was two years ago, that our loving blog family rallied around us. We begged and pleaded for a miracle. We asked for prayers and Psalms, acts of kindness and baking of challah bread. We asked for a miracle.

It was two years ago, that we dressed in red and drove our precious daughter to the hospital with our fear palpable. We couldn't speak and we were conscious of the effort it took for us to just breath. We smiled for our baby girl and kissed her goodbye. She was taken into surgery and all of our hopes and prayers followed her into that operating room.

We sat quietly for hours, unable to speak, unable to eat, making pleas with G-d. You all sent us pictures of your red clothing and your beautiful challah. Pictures came in from around the world.

Then the updates started coming from the operating room. "Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery has begun and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is progressing and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is progressing and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is progressing and she is stable."

"Mrs. Balofsky, this is the surgical nurse from the operating room. The surgery is completed, she is stable and they are closing up."

"Mrs. Balofsky, this is the surgical nurse from the operating room. They have closed her up and will be bringing her to the PICU. Everything was okay."

We paced the hallways, waiting for the slightest glimpse of our child alive. Unable to believe that we would in fact be seeing her alive. They brought her up through the elevator, and we saw her. Puffy and full of wires with machines beeping. The machines beeping- proving she was alive. Their steady beep is what I hear in my head when I envision her little face being wheeled into the PICU. It took every ounce of control to not jump on that gurney and start kissing those cheeks and stroking those thin locks of blonde hair.

It was two years ago, that our surgeon came out of the PICU, after he supervised Tehilla being adjusted into her room, hooked up and stable, and spoke to us candidly. "She did it. The surgery was a success. There were no problems and things went well."

We had to wait some time for them to fully stabilize her before we were allowed into the room. The restraint to not burst in was excruciating.

Blog family, every moment of Tehilla's life is a miracle. That little blonde haired, blue eyed girl with half a heart is a miracle. But this was the moment that medicine couldn't provide us with hope. This was the day that Tehilla survived the unthinkable. I will never forget the looks on the faces of the entire cardiac team, when they saw her up and about. It was a look of pure awe.

While heariversaries are usually celebrated by the date of the most recent heart surgery, and as you know, that was only this past July- this is our heartiversary of miracles.Thank you, blog family, for always being there for us, throughout the good, the bad, the impossible and the miraculous. Today, I say Psalms 100- Mizmore L'todah- A Psalm of thanksgiving.




Thursday, November 24, 2016

Who Me?

Sorry for the suspense, but this deserved it's own blog post.

An organization has reached out to me and asked that I go on a speaking tour in the UK of universities and speak to their Jewish groups about our familly's journey.

The conversation went something like this:

Him: So, we feel that your story is super inspiring and really illustrates faith in trying times. Would you be interested in speaking on 5 or 6 university campuses about your story?

Me: Um, what?

I gave it some thought and had to really digest the idea. It's amazing. We never set out in any way for any of this to come about. We are just a normal, average family with a pretty miraculous daughter. I never could have believed that any of this would lead here.

But the more I thought about it, the more I felt that Tehilla's success is directly connected to her name. That people would hear about a little girl with half a heart and praise G-d. And that is what this blog has become and that is why I have said yes.

As well, the opportunity to raise more awareness about congenital heart defects is too great to pass up.

So, it's official. In February, I am flying to England for a week to go on a speaking tour!

New Normals for Half a Heart

And yet, another two weeks have gone by without an update. So sorry, blog family! But at least there is a lot to tell!

First, I have been asked several time to post a video of Tehilla, so you can all get a glimpse of her personality. That is much more difficult than it sounds, as she is quite a spunky person, but refuses to allow me to record her. The other day, she insisted on bringing an umbrella to school, despite there not being any rain and burst into a funny version of "Rain Rain Go Away" that she made up on the spot. By the time that I reached for my phone and started recording, it was over and she refused to do it again.

But I searched in my phone and found a video that I took around the holidays. So, here it is (cannot be seen on a phone):



video





Tehilla had a (very belated) birthday party at school. I made her another Hello Kitty cake and she had a blast with her friends. She came home shrieking the birthday songs the rest of the afternoon, but clearly enjoyed herself. Her teacher sent me over 30 pictures, but I can't share them, because they have other children in them. Here are two, so that you can get a glimpse.





Her teacher and I have had some very nice conversations about how much Tehilla has come along and how she has had a surge of maturity, development, ability and especially, energy. They see her participating more in the activities and asserting herself better. It's an amazing thing to be having these conversations and knowing that this little heart warrior has come so far.

Here is a picture that they sent me of her completely loving when the zoo extra-activity brought chinchillas to school. They let her hold one and she was incredibly happy. (Much more than when they brought snakes or crickets in other weeks!) 


 And, here she is being the spunky, funny little toddler that she is, demanding to go to sleep with a winter hat on.

 

 
 We are all learning to adjust to our new normal. In the past, a stuffy nose would have desaturated her oxygen too much and landed her in the hospital. Now, we can just pull out the humidifier and settle in for a night at home. Tehilla had a bad cough for a few days. Her cough would turn her purple, but instantly her color would go right back. Her teacher even admitted to pulling out the pulse ox, from Tehilla's backpack, and checking her a few times. And while, her numbers would go low, the teacher would check again a few minutes later and they were right back up. (Have I mentioned enough how much I adore Tehilla's teachers?)

Some vaporub on her feet and amazingly enough- she is fine. You all might be reading this and rolling your eyes, but I'm not sure you realize what an absolute miracle this is for her. We are blessed beyond measure each and every day to have calmness and new levels of stability.

I have some other big news to share, but I will make a separate blog post a little later.


Thursday, November 10, 2016

Heaps of Energy

I cannot believe that it has been nearly two weeks since I updated our blog family. How has our little heart warrior princess been?

Well, let's see...

She has stolen my makeup and colored on my duvet. Twice. She has destroyed her almost completed newly decorated room. She colored on Mechal's book report that she had worked on all week.

Sigh. But she is healthy. She has more energy than I have ever seen her have.  She gets a little cold and it goes away on its own. She is happy and thriving and just the most perfectly normal and naughty three year old.

Toilet training has gone exceptionally well and she is very proud of herself. All in all, things could not be better.

I tried to get a picture of her but she was too busy jumping on the couch. Yes. That little cute ball of energy has half a heart. Thank G-d.

Saturday, October 29, 2016

Adapting to Normal

It took us a few days to wrap our heads around the outcome of our cardiology appointment. We have spent most of the past 3 years waiting for another surgery, or overly observing Tehilla's health and stability. We are amazed and truly dumbfounded by the greatest blessing of Tehilla's health.

I had to explain to her teacher the outcome. She had the happiest smile as I explained Tehilla's stability. Of course, there will always have to be a watchful eye and Tehilla still has mild bradycardia  (low heart rate), but she is doing exceptionally well. Her teacher said, "Wow. Okay. So, what now?" And I responded with, "Potty training?" We shared a meaningful smile knowing that our biggest hurdle right now, was getting this little heart warrior princess properly potty trained.

Wednesday, October 26, 2016

This is How Happy I am

We are back home and Tehilla fell asleep on the ride home and is now entertained with Peppa Pig.

Our appointment with Dr. Golander went so incredibly well. Tehilla's echo showed that her heart is doing very well. "That is a happy heart!" are the exact words Dr. Golander used. Her heart function looks very good and everything looks very well. So well, in fact, that we are on schedule to close the fenestration of her Fontan in the summer.

During the Fontan surgery a hole or “fenestration” is often made between the Fontan circuit and the right atrium so that if pressures become very high in the Fontan circuit, there is a “pop-off” into the heart. In other words, a hole was made to allow for a more successful surgery. It will be closed during a catheter procedure in the summer. Another milestone that we need to achieve.

Dr. Golander discussed her Holter monitor results. There was a very nice improvement. Instead of her previous mean (average) heart rate being 69, it went up to 87! Her lowest heart rate measured 74 and her highest measured 129! Those are excellent numbers for Tehilla and show a definite improvement. Dr. Golander said that they do not know why this bradycardia episode happened, but very clearly Tehilla's body is repairing itself and SHE DOES NOT NEED A PACEMAKER!!!!!

 He expressed how happy he is with her progress and said, "So happy that I do not need to see her for 6 months and we will repeat the Holter monitor before that appointment." When I asked about her level of stability and if we could fly abroad, he said, "She can go wherever. No restrictions. That is how comfortable I am."

We are overjoyed. I told Tehilla in the car that her heart is doing very well and Dr. Golander said that it is happy. She said, "It's healthy, Ima! I have a healthy heart!"

"That is a Happy Heart!"

"That is a Happy Heart!"

More details to follow.

Nervous Tehilla

Two hours later, our correct paperwork came through.  We are now waiting for our turn and Tehilla is very nervous. So, we played with Snapchat to pass time.

Her vitals were taken and they are the best they have ever been! Her O2 saturation is at 94!!!!! Her heart rate is at 99!!!!!! And her blood pressure was 116/61!!!!

Now we are waiting for her echo and appointment with her cardiologist, Dr. Golander.

Waiting for Paperwork

Another hospital visit, another insurance snafu. We are waiting for our paperwork to come through. In the meantime, this is the child that we are worried about her heart rate. Yes, the one that is hanging upside down on gymboree equipment.

Tuesday, October 25, 2016

The Past Ten Days and Tomorrow

When you spend your early summer preparing for your little daughter's heart surgery, you block out any dreams or hopes for what the future holds. You live life in the present and just cherish the moments that your little one is with you. That is how we have been living since Tehilla was born and with every surgery or catheter, that mindset is reaffirmed.

When this holiday season crept around, it felt like a surprise. We have had our minds on so many things concerning Tehilla, that we honestly weren't paying much attention to the calendar. And that made it all the more powerful.

This past Rosh Hashana and Yom Kippur, while I prayed, I found time to thank G-d for all the time that He has given us with Tehilla. I treasured having my family all together for these past holidays and found myself thanking G-d repeatedly for the blessings that we have received from Him. The way the calendar fell out this year, made every other day a holiday or Shabbat and while it felt like a cooking and cleaning marathon, it just left us with more opportunity to realize how grateful we are for the simple things: 3 healthy children at home, celebrating with us.



We were beyond blessed to be able to spend so much of Sukkot with so much family. One of my brothers flew in from NY and for Shabbat Sukkot we hosted Ron's entire extended family: 25 people all together! 

We spent Chol Hamoad at the beach and the zoo and Tehilla enjoyed herself immensely.  



Thursday, we spent relaxing at home and getting ready to celebrate Tehilla's 3rd birthday! We had the party on Friday and the entire family over on Shabbat. It was a very busy weekend and Tehilla completely enjoyed her Hello Kitty party!















 Tomorrow is Tehilla's cardiology appointment with Dr. Golander. We will be receiving the long awaited results from the Holter monitor and find out what our course of action is. Please pray and have Tehilla in your thoughts. I will keep the blog updated as the day carries on.





Sunday, October 16, 2016

Sukkot

There has been no time to blog or catch our breath as we jump from holiday to Shabbat repeatedly but we are all doing well and loving the family time that we have.

We are feeling an overwhelming sense of gratitude and blessing as we are able to spend these holidays together and with family and friends.

Here is a picture of our Sukkah which the kids completely decorated. The festive look just really embodies how grateful we are to be a whole family having survived so much. Thank G-d!

Chag Sameach to all our blog family!

Tuesday, October 11, 2016

Yom Kippur

Tehilla completed her Holter monitor on Friday and we returned the device. We meet with our cardiologist in two weeks to receive the results and followup and, depending on the findings, form a plan of action.

So, what has Tehilla been up to lately.  Well, ya know, just ordinary amounts of mass destruction by a three year old.

Tonight is Yom Kippur. May this year bring us all joy and calmness, health and balance, and lots of time to enjoy our family and friends.

Thursday, October 6, 2016

Holter Started

Another hospital appointment; another hour wasted in beaurocracy. But....we finally were able to start the Holter monitor.

Tehilla has been calm but quiet the entire time we have been here. She has negotiated many treats out of me.

These next 24 hours, her heart rate is being recorded to determine if she is stable or in need of a pacemaker. Please pray for the best possible outcome.

Wednesday, October 5, 2016

Holter Monitor Tomorrow

It took 3 nights of Tehilla not sleeping for us to figure out what was going on. In the crazy hours of the nights, we begged and pleaded for Tehilla to sleep. We wondered if something was wrong, even got out the thermometer and pulse ox. Everything was normal- good even!

What was it? Sleep child!

And then...we realized our miraculous 3 year old was JUST afraid of the dark. How perfectly regular and age appropriate! Exhausting but the best we could ask for!

Thank You, G-d! Thank You for normal!

Tomorrow is Tehilla's Holter Monitor. We will be in the hospital in the morning and then home for 24 hours to measure her heart rate.

Pray- pray for improved results!

Sunday, October 2, 2016

Shana Tova

Shana Tova to all of our wonderful and supportive blog family. May this year bring you all happiness, health, strength, wisdom and clarity! May this year be filled with blessings and joyous occasions.

Tehilla turned 3 years old yesterday. We were blessed this past year with 365 days of miracles. May this year bring us another 365 days of miracles. May it bring our family healing and time to spend together. May each of our 3 children continue to blossom in their own unique and beautiful self.

Sending love to all of you!

Tuesday, September 27, 2016

Croup Fun

Last night, as we tucked ourselves into our beds, we heard the distinct and familiar sound of a barking croup cough. We scrambled to Tehilla's room and found her sitting up in bed.

"Hi, Momma!"
"Hi, Lu."
"I'm coughing. A lot."
"Yes, I hear you coughing."
"I'm sick...and sweet."

We gave her a dose of ventolin to open her airways and opened her window to let the cold air in and help her breath.

We prepared for a rough night, but she actually slept fine after that. This morning, she woke up barking again, so we went to the doctor and unfortunately got a doctor we don't love. He heard her strydor but felt she was okay and agreed with how we handled it. Only a little bit of advocating was necessary as we discussed what to do if she was struggling to breath, which came down to running to the ER for oxygen and steroids.

She seems to be doing well, so I don't think we will end up with anything like that.

Tehilla very nicely asked the doctor for a sticker. I was impressed with that as it seems she has really gotten over the trauma of her surgery.

Other than that, Tehilla has been methodically coloring our possessions and the members of our family pink. She enjoys sneaking up on us and quickly scribbling on our limbs. We have not located her stash of markers.

Sunday, September 18, 2016

Steady and Wonderful

Things with Tehilla have been going wonderfully. Actually over the top amazing. You see, Tehilla has developed a little cold. And that's it- it's just a cold
She is not pale or blue. She isn't admitted to the hospital or in need of oxygen.

She is holding her own for the first time ever. For the first time, a little respiratory infection is not life threatening.  That is how wonderful she is doing.

She is very happy at school and, as you can see from the picture, her hair has grown just enough for her teachers to put a little itty-bitty pony tail in her hair. This has provided her endless amounts of joy and happiness on her quest to being a pretty princess.

But don't be fooled by that sweet face. This past week, a kid bit Tehilla at school. She needed to see the doctor, as the bite tore through her skin. In the end, she is fine and she needs rigorous antibiotic cream to avoid strong oral antibiotics.

When I spoke to Tehilla about the incident,  I explained to her that when someone is hurting you, you push them off of you and go get help from the teacher. I said, "So, if someone hurts you, what do you do?"

"Smack him!!!" was her response. As you can see, no need to worry about that little one.  She is feisty through and through.

Friday, September 9, 2016

Accessorized

Tehilla has been doing really well. School is going nicely for her.  All the kids have been adjusting very nicely to their new arrangements and schedules. Thank G-d!

Today, Tehilla accessorized herself and looked so darn cute, that on our walk to school, people kept stopping to wish her "good morning" and one person even pulled over to remark about how cute she is.

We thank G-d every day for the miracle that brings smiles to our faces everyday.

Friday, September 2, 2016

Ima shel Shabbat Babushka

I thought that I wouldn't be posting again before Shabbat, but then Tehilla came home from school like this. I could not get over it.

My little Babushka!

Ima shel Shabbat Babushka

I thought that I wouldn't be posting again before Shabbat, but then Tehilla came home from school like this. I could not get over it.

My little Babushka!

Start of the School Year

September 1st came and with incredibly happy smiles we all sent our kids to school. Mechal started Grade 5, Tzviel started Grade 1 and Tehilla went back to the same private Gan (nursery).

At the end of last year, Ron and I made a decision with the help of Tehilla's wonderful teacher, not to put Tehilla in a municipality nursery, even though she is entitled to a medical shadow.

We felt that Tehilla is behind maturity wise, due to everything that she has been through.  At some point, she will catch up, but for now, being in a group of 35 kids was too much.

As well, Tehilla is still not toilet trained. And while she can understand Hebrew, she isn't speaking Hebrew.  All in all, we were happier with the decision to keep her in a private setting.

We are blessed that Mechal and Tzviel are transitioning very well. Par for the course, is explaining to their teachers our situation and how it impacts them especially when there is an unexpected sudden rush to the ER. So far, I have spoken to Tzviel's teacher, who immediately informed me that her nephew has a CHD and she is very aware of the strain it puts on the family. While it is awful that anyone should have to know of this, that looming 1 in 100 statistic marches on and thankfully for us, will provide a level of sensitivity that our family needs.

Today, Tehilla is Ima shel Shabbat in Gan!  She has brought muffins and carefully picked out her outfit.

Shabbat Shalom, dear blog family!

Monday, August 29, 2016

My Speech- Dear Dr. Big Nose

Dear Dr. Big Nose,

I was 19 weeks pregnant when I came to see you. I was pregnant with my third child and after the 3D anatomy scan, it was revealed that my child had a congenital heart defect. We went to see a pediatric cardiologist in Modiin who did an echo and diagnosed my baby with Hypoplastic Left Heart Syndrome. At that appointment, we were told very little information and explained that people have two options. Either they abort the pregnancy, or they throw their hands up to G-d and pray for a miracle. We were told to follow up with another echo in a few weeks time.

Our world had been turned upside down. A family member read an article about your hospital and its pediatric cardiology department, and pushed us to go see you. I will never forget the details of that day.

It was a warm, spring day, and we were anxious to meet you. We were impressed with how nice the pediatric cardiology department looked, and how sweet and understanding the secretary was. We waited patiently for our appointment, while our hearts filled with some fragment of hope that maybe you would say something good or helpful.

We walked into your office and were greeted by a smile. We handed you our paperwork and started explaining the previous echo. You stood up and motioned for me to move over to the bed for an echo. You made no eye contact and simply made grunts, as you pushed the echo wand against my stomach, exploring our baby’s heart. You put the wand down, and while looking at the screen, and never meeting my eyes, you said, “Yeah. So, it’s hypoplastic left heart syndrome. You need to schedule an appointment to do the abortion.”

My husband and I exchanged crushed glances, and we turned to you and said, “That’s it? What about surgery? Can’t anything be done?”

You stood up and walked to your desk, never looking at us, and said, “There are 3 surgeries, but the chance of survival is very low and you need to consider the quality of life of the fetus.”

“What does that mean? Quality of life? What would her quality of life be?”

“This is something for you to discuss with a genetic counsellor.” When we pushed you for answers, you responded, “Well...no sports.”

“No sports? Sports? Anything else?”

“There is more, but you should abort the pregnancy. If you insist on pushing through with this, then make an appointment with a genetic counselor. But you must really consider IT’S quality of life.”

At that point, my wonderful husband texted me, while standing by my side: “Will you look at the size of his nose??? You think we have it bad...imagine his quality of life!” And so, from that moment, you received the moniker: Dr. Big Nose. I take absolute pleasure in hurting your feelings.

We rode the train home, devastated and convinced that our only option was to abort our baby.

As I write this letter to you, I am preparing for a special party. You see that “IT” that you so casually dismissed- that “low chance” that you refused to discuss- well, she is nearly 3. She has big beautiful blue eyes and short blonde hair. And she is more amazing than you will ever be.

That party that we are throwing is a Mesibat Hodaya- a party to thank G-d. You see, that beautiful little girl- she just survived her Fontan surgery. She has survived 4 open heart surgeries. She has survived 4 heart catheters. She has survived.

That doesn’t really explain enough. She is smart and funny. She is sweet and kind. She is creative and adorable. She runs and jumps with no physical disability. She talks and sings with the sweetest little voice. Mostly, she is fiesty. And it’s a pretty good thing, that she is, because she will spend her entire life having to deal with people like you, Dr. Big Nose.

Over a year ago, I asked our most incredibly kind, sweet, dedicated, smart and loving pediatric cardiologist, Dr. Golander, about the appointment that we had with you. As the wonderful individual that he is, he explained that you went to medical school and did your residency at a heart center in France. In this specific institution, their policy is to abort babies with HLHS 100% of the time. They will not talk about options or do the surgeries. For the families that refuse to abort the pregnancies, once the babies are born, they send them home on comfort care. That means they send them home to die. They offer no medical treatment whatsoever. Our cardiologist explained that this was where you received your training and that was why we had received that kind of treatment.

For awhile, I turned this information over in my head, trying like Dr. Golander, to make peace with that information- but I couldn’t. You see, the mass population understands that medicine is always evolving. There are always new discoveries and new medications and surgeries that are being invented. The most basic google search for HLHS will turn up all the latest information that can be found. You would find out that there is a team at the Mayo Clinic that are in the process of learning to grow hearts through stem cells. You would know that CHOP Hospital has an entire unit dedicated exclusively to single ventricle patients. You would know that throughout the world, they are making advances and we are at the cusp of finding real cures and answers. And all good doctors keep themselves updated. They do the research and the reading and stay on top of things. But that’s just it. You’re not a good doctor. You don’t stay updated. It doesn’t matter that 15-20 years ago, you learnt that HLHS babies should be aborted. That was 15-20 years ago. How could you, as a pediatric cardiologist, see patients and have not updated yourself, at all.

So, I understand that you’re not a good doctor. But that really isn’t all of it. If you know that you are not updating yourself, and you don’t have the most relevant information, then you have a responsibility to say, “I’m not qualified to answer your questions.” But you didn’t. Instead, you told me to abort my baby. That makes you a bad person. You would rather a child not be born, then deflate your ego and admit that you are not qualified.

We are lucky that my husband and I are inquisitive people. We are educated and seek answers. We are blessed, because G-d pushed us through the awful torment of your advice, to find out more information. To seek understanding and answers. Thank G-d. My heart hurts thinking about the countless babies that were never given a chance to fight because of your terribly unqualified words.

In this letter, I am enclosing a picture of my gorgeous daughter, Tehilla. You should keep it, and let it motivate you to never give advice that you are not qualified to answer. To either choose to learn more and change your attitude or find a different profession.

Tomorrow, we are celebrating your epic fail. We are celebrating our daughter’s life. No thanks to you.

Sincerely,
Shoshana Balofsky

This is a party of thanks to G-d. You are all standing here because Tehilla means something to you. She is the little girl with half a heart. The survivor, the fighter- the miracle that prances through our living room, spreading glitter over everything.

The other day, I was speaking with my dear friend, Ita and she made a comment that stuck with me. After a terrible scare that her family experienced, she said, “You know, we had a miracle. There’s no other way to explain it. But you- you guys live with a miracle every day. Every day.”

It’s true. She is a miracle, and I want to thank G-d as publicly as possible. Thank you, G-d. Thank you for her life. Thank you for returning her to us. When you prepare for heart surgery, you don’t know what will happen. The thoughts torment you and the fears take over. But here we are- after the Fontan. I am just completely in awe. When we first heard about HLHS, the next piece of information was the 3 staged surgeries: Norwood, Glenn and Fontan.

When we met Professor Rein, I was 20 weeks pregnant. He told us that from that point in my pregnancy, there was a 45% chance that Tehilla would live over the age of 5 years old. After Tehilla was born, her chances went up to 75%. She is nearly 3 years old right now and just survived the Fontan.

G-d has blessed Tehilla. He has blessed our family and we are watching a miracle scamper through this party, while trying to steal more cookies. It is just unbelievable.

While we are thanking G-d, it is important to take the time to thank many other people. First and foremost, while I am the person behind the blog, none of anything would be possible without my husband. He is my rock, my support system, my friend and the person that always manages to make me smile, even at the worst of times. Thank you, Ron, for absolutely everything.

I need to say thank you to my other two rockstar kids. This battle has been theirs too. While they don’t always understand what is at stake, this has been extremely hard on them. They are compassionate, understanding, loving and flexible. Mechal and Tzviel, you amaze me and I could not be any prouder of you.

I’d like to say thank you to my in-laws and parents. My inlaws have twice moved into our home during two of the surgeries to help take care of our kids. My parents moved Ron and the kids into their home during the first surgery. They have all worked together to make sure that everything is okay. We love you and appreciate everything that you have done. In the same breath, I need to thank our dear friend, Josh. He moved into our home during surgeries, catheters and hospitalizations to help Ron take care of everything. Thank you so much.

I need to say a special thank you to my heart mamas. A few of you are here and the rest of you will read this on the blog. Your friendship, your advice, your understanding. It raised me up when I was drowning. I love you like my sisters. Thank you so much.

A huge thank you to our siblings who have helped out whenever possible. Thanks to Sarah and Natanel, Tehilla’s medical records list her first food post-op as sushi.

Thank you to our friends. If you are here or reading this on the blog, it’s because you stuck by our side. You didn’t abandon us during our most difficult times. You called, you messaged, you popped over. You organized meal trains, and took my kids out. You knew when to ask questions and when to change the topic to something else. You’ve been there by our sides and we adore you for it.

Thank you to all of our blog family. Tehilla breaks the mold every time. She never does things by the book and always gives the doctors something to worry about. Our cardiologist explained to me that I need to understand that this is her medical situation. She will always define her own parameters and always march to her own beat. She is a miracle and I believe that it is in no small part because of all of your love and prayers. I love how much Tehilla has touched your hearts, but you can’t imagine how much you have touched our hearts.

Thank you to everyone, from the bottom of our family's 4 ½ hearts.

The Party

Friday morning, we were joined by over 100 friends and family. There was a ridiculous amount of food, loud fun cheesy heart themed songs, cheesy heart tablecloths and cups and a lot of happiness and laughter. It was a huge milestone for our family to celebrate Tehilla's successful Fontan surgery and to thank G-d.

There was so much love and so many smiles. We are so blessed to have made it to this point. Thank you to everyone who made the effort to join us. We got to meet some members of our blog family and thank them personally for praying for Tehilla. We enjoyed ourselves so much, that we took very few pictures. So, if you were there and want to send us pictures, we would really appreciate it.

I made a very long speech, that I will post separately.