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.