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.

Our Happy Place

 

 

How does a week go by without me updating the blog!  Between watching the kids, fitting in time to work, keeping the house in order and having a wasp infestation removed, planning a 10 year old's sleepover party, painting my bedroom, reorganizing everyone's bedroom, and getting two kid's ready for school, including Tzviel going to first grade....how do I not have time, right? It's been a busy week.

Thank G-d, everyone is healthy and well. And as you can see by the photos and the title, for the first time this summer, we went to our happy place- the beach. After surgery, Tehilla was not allowed to submerge her scar in water, so she has been having sponge/shower baths, and could not go in a pool or to the beach. Well, 6 weeks passed since her surgery, and we spent Thursday preparing all of the cooking for Shabbat. The kids helped organize every last detail for the beach, all of Thursday. We were so prepared, that we literally, woke up on Friday morning, threw on our bathing suits and left the house at 8:40 am for the beach.

We got to the beach and took full advantage of being out of seclusion. We met up with 3 other families. The water was absolutely perfect. It was a deep turquoise color and the perfect temperature. We all went in and let the waves wash over us. We built sand castles and turned our kids in to sand-mermaids. We ate lunch and got popsicles and just enjoyed the most perfect day.

There is something about the beach, that just makes all the urgency of life disappear. It sucks out all the anxiety and stress, all of the fears and difficulties and replaces it with timeless tranquility. I could stay at the beach forever.

Once again, I found myself shoulder deep in the water and reflecting on life. I waded in to the water, and watched my body be engulfed by the turquoise water. I reached my arms out and felt myself feel weightless, as I began to float. I looked up at the beautifully deep blue sky and started to mumble my thank yous to G-d.

"Thank You. Thank You, thank You, thank You. You gave her back to us. She survived another heart surgery. She did it. You did it. She is alive. Thank You for moving mountains for us again."

It was the most perfect day and we left the beach at 3:15 pm, drove home, showered and lit the Shabbat candles. It was exactly what we needed.

Out and About

Tehilla is no longer secluded! (I think that calls for a standing ovation.) She is now 6 weeks after surgery and has been home for a month. I can't believe the time has gone so quickly.

On Shabbat, we went to the park and were overjoyed to see so many of our friends. It is very hard being isolated, but now, we only have good things to look forward to. With G-d's help.

Tehilla is feeling great and seems to be getting even more energy every day. Her color is a beautiful shade of pink and she spends her days playing with her dolls, preparing pretend food, destroying passport applications with Hello Kitty stamps and scissors, pouring water on her brother and stealing her big sisters possessions. She is the most miraculously normal nearly 3 year old.  And we are blessed beyond measure.

We are preparing to have a Mesibat Hodaya, a party of thanks to G-d, in honor of Tehilla's successful surgery. It will be on Friday, August 26, 10:00 am-12:00 pm. Our entire blog family is invited and deserves to join us in this celebration.

If you are in Israel and can join us, please email: tehillasheart@gmail.com and we will send you our address.

All Smiles

We have been busy doing crafts and playing and potty training.

Tehilla is doing very well. Potty training has been two steps forward and one step back. We are not taking it too seriously and letting her take the lead.

The past few days, Tehilla has been more irritable and we think she may be starting to develop an ear infection. The unimpressive on-call doctor checked her and only saw a little bit of redness and wasn't overly concerned. We will see how she feels over Shabbat.

All in all, Tehilla is happy, sweet and quite a little funny character.

Shabbat Shalom to everyone!

How She Really Is

People keep asking me, "So...I don't really understand. I'm reading the blog and I get that her heart rate isn't good. She's not doing very well, right?"

Nope. Here is a picture to illustrate how Tehilla is doing. It's dinnertime and she has jumped on the table and grabbed a bunch of tuna patties in her mouth. She has ketchup smeared up and down her arms and bulgar stuck to her hair and face.

Or there was the time before that when she stripped down naked and was running around. She saw a bowl of unfinished cereal and milk that someone had left in the kitchen. While it was out of reach, she stood on her little tippy toes and stretched for it. Her fingers caught the edge and she pulled. The bowl flipped, sending milk flying all over her. She started crying that the milk was in her eyes and then slipped on the puddle that formed on the floor.

Or immediately before that, when she decided that Tzviel was not allowed to live with us and attempted to kick him out. She sat on the stairs, still naked but with a giant purse and toy phone and screamed,  "Tzviel bugging me! Get out my house! Get out! "

So, ya see. If you didn't know that she was having a heart rate problem, you would never know. She is a magnet for mess and trouble and perfectly normal. Just your average very naughty nearly 3 year old. More reasons why we believe that she will be okay and with G-d's help, her heart rate will improve on its own.

Potty Training

Every parent awaits the moment with their toddler that they can potty train. The hope of not having to deal with diapers is an exciting stage, well worth all the trouble potty training brings. For us, it's more than that. Tehilla was very ready to potty train. Had we not been awaiting surgery, we would have potty trained her by Passover. We pushed it off, because there was talk of surgery because of her blood pressure, and after the catheter, it suddenly became a planned Fontan surgery. Potty training her had to be pushed off until afterwards, to avoid regression.

Of course, there was surgery...and all the fears and anxiety. The what-ifs and the deep soul crushing pleas to G-d...please...get her through this. Let her survive...let us be able to raise her...give us the chance to do the mundane, normal parenting things with her. It may seem overly dramatic, but having her Fontan behind us and being able to potty train her, feels like the greatest gift of all. Finally, just a normal toddler milestone.

So, yesterday, we presented her with Big Girl underwear. "Woooooowwww!" She looked at them in awe. They are the cutest little underwear and while I wish I could share pictures of her in her little underwear, I won't. One day, please please please G-d, she will grow up and want to read her story. I will print this blog out for her and she will be able to read about her journey, that she hopefully has no memory of. So, while, believe me, watching her scamper around in her little underwear and shirt is just the most gosh-darn-adorable thing ever, I won't do anything that would embarrass her.

Potty training is going unbelievably well and while there are the normal setbacks, she was so ready for this, that it's going very well. She is taking it very seriously and making sure to ask all of us if we need to use the bathroom, as we ask her.

That's about all that I can share. Thank G-d for the most normal parenting moments!

What Comforts Me

When I think about yesterday's doctor's appointment, I can't believe that we are yet again on the throws of the possibility of another surgery. It's upsetting and frustrating.

But here is what comforts me...Picture this scene from yesterday:

All three kids are given plant holders to decorate with glitter confetti. Things are going well and everyone is working nicely together. We are talking and chatting and discussing what plants we want to grow and what kind of crazy invention we would come up with to get rid of bees and wasps. Everyone is happy and busy, when a work email comes in that has to be taken care of immediately.

I go to the next room and start working. Only a minute has passed, when I hear Mechal start shouting, "Tehilla! No. Put down the glitter container! Oh my G-d! Ima! She figured out how to open the containers! Give it to Mechal, please? Please? Ahhhhh, oh no!!!!

I turn to find Tehilla standing next to me with a glitter confetti container in each hand. She has decorated my entire office floor. I jump up and spring towards her, but she has anticipated that and has taken off running. She is running with the containers upside down and a steady stream of glitter is flowing behind her. We all run after her, but by the time we have caught her, the entire downstairs is sparkling.

We take the glitter away and reprimand her. While I go to get the broom, she finds the spray bottle for the plants, and starts to spray the glitter in the living room. The glitter is now wet and not going anywhere. While I look around, surveying the damage, Tehilla looks at me smiling, and says, "It's not nice, Ima? So much sparkly! Hurray!"

This extremely naughty but innocent little fire cracker just has to improve. When you look at her and how she acts, you can't imagine that there is anything wrong. So, as exhausting as the clean up was from her glitter escapades, I feel comforted by her zest for life and sparkles. It gives me hope that she can push forward. With G-d's help, she will.

Hanging in the Balance

I apologize for making you all wait. It's a very long post and if you want to understand the situation properly, you will have to read it through. Here's an explanation of today's appointment.

Tehilla had her vitals taken which were all great, except for her heart rate which was at 70. I realize that I haven't given enough of an explanation about heart rates to help understand what is going on with Tehilla. So, let's start at the beginning.

In an average child, and was also the case for Tehilla, a healthy heart rate would range anywhere between 60-140 beats per minute. 60-80 would be when a child was sleeping and in very reduced activity. 120-140 would be at the height of a child's activity: running around the playground, crying and throwing a temper tantrum...things like that. Throughout the regular flow of a day, when there is just regular activity and tasks, it would range between 90s and 120s. I hope that is clear for understanding the contrast between an average child (and what was normal for Tehilla) and what is going on now.

Tehilla had her echo with the technician. Everything went very very well. Very. Extremely. Her heart function is great! Her fenestration (the hole left during the Fontan for mixing bloods) is working wonderfully. Even better than seen on the previous echo. Everything looks great.

Dr. Golander came in and looked over everything and quickly scanned a bit more with the echo. He looked over all of the results and started, "Right. Okay, it's like this..."

He then explained that her echo was amazing and he was very pleased. He asked questions about how she was doing at home. My response was that she has been doing very well. Her energy level is fantastic. I even joked that maybe it's a little too fantastic, to which he laughed and apologized for that. She does not seem to tire easily, like she used to. She does not get out of breath often, unless there is a good cause. She is happy, destructive, and playful. Everything a nearly 3 year old should be. She sings and dances, does crafts, destroys laundry piles and colors on the wall. Perfectly normal behavior.

Her color has been this (for me, mind boggling) perfect shade of light pink. I find myself marveling at the color of her skin about once a day. I was so used to shades of purple and she just looks so....healthy! Her fingers and toes were almost always deep purple and now, they are a fabulous shade of skin tone.

She still complains every other day of pain from the surgery and when we have stopped giving her Fenestil (antihistamine) at night or Optalgin (pain killer), she doesn't sleep peacefully and will wake up and complain of pain and/or itchiness. So we have been giving it to her nightly and will wait a few more days to try a night without it. Dr. Golander was pleased with all of this.

"So, let's talk about her Holter monitor results..." Her results came back and showed that her heart rate ranged between 40-90. When she was sleeping it stayed in the 40s and 50s and when she was at her most active peaks, it went to 80s and 90s. Her average (mean) heart rate was 69 throughout the course of 24 hours. She had only one point where it seemed that her heart skipped a beat and that was for 1.9 seconds.

Since, this isn't usual, Dr. Golander consulted with an Electrophysiologist specializing in pediatric cardiac patients from Schneider's Childrens Hospital in Petach Tiqvah. His name is Dr. Bender and he is considered to be the leading expert in the entire country. Since we are having a problem with the electric circulatory system in Tehilla's heart, he is the specialist needed. 

Dr. Bender explained to Dr. Golander that when it comes to these kinds of problems there are 3 things that are considered:
1) The heart function
2) The general well-being and stability of the child
3) The heart rate

Tehilla's heart function is great. Absolutely wonderful. Tehilla's well being and stability are fantastic. So, now it comes down to heart rate. The scale that Dr. Bender gave was: If the heart rate average (mean) is above 70, we don't do anything. We leave it alone and watch and wait. If the heart rate average is below 70 then a pacemaker is needed.

Tehilla's average is 69, which is for all intensive purposes about the same as 70. So she is right at the border. Therefore, she does not need to have a pacemaker put in immediately.

We will watch and wait. Wait for what? Wait for her either to get worse or get better. Her heart rate can stabilize and get stronger and then she will be fine. Or her heart rate can deteriorate and then she will need a pacemaker surgery.

We will keep a close eye on her and watch for any physical signs of her health deteriorating, such as being out of breath, fainting, not feeling well overall, being low on energy...etc. If we see anything like this, we will call our cardiac nurse and go straight to the hospital. She is to carry on with life as normal, meaning she will go to school and have a normal routine- but we and her teachers will have to keep a careful eye out.

Every two months, she will do another Holter monitor and come for an echo to see how she is doing and to make sure her heart function is okay.

So, we are basically neither here nor there. We are hanging in a balance of unknown and things can shift to either extreme. We are blessed beyond measure that it wasn't an emergency pacemaker surgery. But we have a lot to pray for. We- our entire blog family- needs to pray that Tehilla's heart rate improves, that she does not need more surgery, that she can continue to thrive and get stronger every day.

Please pray. Tehilla bat Shoshana

Update Coming Later

The appointment did not bring the happy results we were hoping for. They are also not awful. But they require explaining and I need to type it up later on the computer. The update will come later on.

Here

We are at the hospital and waiting for our turn.  Tehilla was very scared this morning when we told her that she had an appointment. We talked the entire drive over and she has been very calm and putting up very little fight.

She had her vitals taken and her oxygen saturation was 88! Her heart rate was 70.

We are waiting patiently while Tehilla unpacks my purse and decides what should be thrown out.