Barely Treading Water

So...I'm going to take this moment to take the biggest deep breath. *Ahhhh* That felt better.

It has actually been a month of everyone being sick, around the clock. As soon as one kid feels better, another is running a fever or finding a perfect opportunity to throw up on one of us. And then that day that everyone felt just right- that was when Chanukah vacation started.

When filling amoxicillin for four of us and augmentin for the fifth, the pharmacist sympathetically smiled and said, "Tough start to winter, huh?"

I know, I know- count your blessings. And I do. I'm just so tired. So so tired.

After that scare that Tehilla gave us, she kept improving and her oxygen saturation stayed exactly where it was supposed to. But then she got a cough that got worse and worse and worse. We tried a lot of different things to help relieve the cough, but nothing seemed to help. After hearing some stryder in her cough, I gave her one of Tzviel's puffers which immediately stopped the coughing until the morning. Two puffs and it was gone again.

Then her ear started hurting again. We went to see our doctor, who agreed that the puffer was the right move and checked her thoroughly. Turns out it was pain caused from pressure in her ear canal from a new cold starting. Joy to the *enter expletive* world.

Needless to say, Chanukah was celebrated with joy all eight nights and spent with family and friends. Tehilla is feeling well enough to sing every Chanukah song she knows from school over and over. And over and over.

With all the complaining aside, we are very blessed to have spent this wonderful holiday together. Every holiday that goes by, I'm reminded of what a true miracle it is that we are together and celebrating as a family. These moments can't be taken for granted and they are treasures that we all hold onto dearly.

Settling in

We are settling in for a night at home. Tehilla is clearly not feeling well and seems off. She started the Augmentin right away. And went to bed at her usual bedtime.

She woke up a few hours later feeling very unwell and then very hungry for pasta. She let me check her oxygen levels. She was back up to 83-85, so we are very happy.

She has insisted on sleeping in our bed. We will see how tonight goes but things are looking good and should allow us to stay home and out of the ER.

Desat Judgements

About the moment that I stepped off the plane from England, everyone in our family got sick.

Tehilla seemed to have a virus that got worse and worse. It finally developed into an ear infection, while the rest of us were diagnosed with strep infections. Five antibiotics handed out twice a day...feels a lot like winter.

Tehilla went back to school a few days later when she was symptom free. But the past few days she has been napping and a little lethargic. Today, I was called to school because she threw up.

While all the various teachers clucked around her offering their old wives tales as medicine, I studied Tehilla's face. She was purplish and looked unwell. I changed her clothes and pulled my pulse ox out of my purse. 73 and then 78. Not good.

I called our doctor who wanted us to rush to the ER. I didn't agree. Tehilla desats when in pain and this has happened repeatedly with ear infections. I wanted her to be seen but our doctor was leaving the office and the doctor on call is someone we don't like or rely on for medical advice. I don't want to go to the ER with all the nasty illnesses going around now and risk exposure to Tehilla.

I talked it out with our doctor who agreed it's probably that her antibiotics aren't working or it's progressed to pneumonia. He wrote a prescription for Augmentin and a referral to the ER. We are to start her on Augmentin right away and if we see any other signs or think she is heading downhill, we are to go to the ER.

We are so blessed to have a doctor who fully trusts our judgement and is willing to work with us.

Prayers that I'm right and we don't have to run to the ER tonight.

Miracleversary

They all were miracles. All 4 of her open heart surgeries were miracles. Each in their own right. But there was something very different about that 3rd surgery, if you will all remember.

For those that were part of the blog family three years ago- you know that it wasn't just that the odds were against us. It wasn't just that open heart surgery has a challenging success rate. It was that she wasn't meant to survive.

Those were the days when our doctors eyes were brimmed with tears. Those were the days when we heard the crappiest words you can hear, medically speaking: "out of options" "no chance of survival"...

And those were the days that we turned to you. We had absolutely nothing left we could do and nowhere to turn. And you embraced us in the warmest hug a family could ever give. You cracked the heavens open with your prayers. You filled charity boxes. You baked challah en mass.

So, yes, I made up a word. Miracleversary. It's a great word. Tomorrow marks the day that a complete miracle happened here. "Nes Gadol Haya Poh". Today marks the day that you all showed up when you were asked to. You all stood by our side and loved the heck out of us and our daughter.

I love you, blog family.

Manchester and Leeds

Wednesday night, I spoke in Manchester and Thursday in Leeds.

There is always one or two interactions that always stay with me. This time it was Chaya in Manchester and Shira in Leeds.

After speaking, Chaya came up to me and let me know that as a med student, how much my words meant to her, that our story would always stay with her and she would never abuse her power as a doctor, like Dr. Big Nose.

Then there was Shira who is studying to be a medical clown and loved hearing about our interactions with medical clowns and how bringing a smile to a family stuck in the hospital can give the perfect relief to a hard situation and actually help recovery.

I'm brought in to speak to students to share our family's journey and inspire them. But it's situations like these that actually bring hope to me. Thank you, Genesis, for the wonderful experiences and all the good that you do!

And now, blog family, it's time to go home and spend Shabbat snuggling with my family!

Nottingham and Bristol

I arrived in London on Sunday night. I've been flown in by a program called Genesis. They provide programming for university students in England.

Monday, I was sent to Nottingham, where I gave my first speech. Yesterday, I went to Bristol.

I speak about our family's journey and what we have gone through. I also talk a lot about you, blog family, and all that you have done to support us and help us through out heart journey.

It's unusual to spend so much time reflecting on our life but it only reminds me of how truly blessed we are.

Today, I will be speaking to two different groups in Manchester.

London Here I Come!

So after being home for one week, I am now waiting to board my flight to London. I'll be all over the country during the next few days, speaking about our family's journey.

Tehilla's reaction when I said I was leaving again, "It was amazing when you were gone. It'll be great!" Thanks, kid. I'll miss you too.

See you all on the British side.

Cardiology Check-up

Everyone take a big sigh of relief.

Everything is fine. Her oxygen saturation is a little low at 83 but everything looks good. Thank G-d.

The big question is whether we should close the fenestration (the remaining hole) in her heart via catheter. It will raise her oxygen saturation once it is closed. And give her more energy. We joked that Dr. Golander has to work better on his marketing angle. We told him he should have told us that it would make her sleep through the night or stop throwing temper tantrums.

Ultimately the decision was made to not do it in winter as she will have a harder recovery and adjustment if she gets many colds and coughs as she is bound to do.

So we are waiting until the spring. In 6 months we will come for another check-up. If her winter was not ridden with lung infections than she will have a catheter in the spring and close the fenestration.

No surprises, everything stable and good and room to make decisions based on preference- so honestly that couldn't have gone better.

Everything All Together

Do you ever notice that life has this way of mushing and smushing and stomping everything all together. It's always a balancing act, always a high and a low, always a little of this, a sprinkle of that, and an avalanche of something else. That's where I am right now.

I had meant to post so many things, but there was something always more important. And now these two important things that I want to share and announce are completely overshadowed for me by what happened last week. So, very quickly, for those that won't read through everything else:

1) This Wednesday, Tehilla has her cardiology appointment. There are nerves and anxieties flying around, even though she has never been so stable. But every new appointment brings a possibility for bad news. So, we are praying this appointment brings only more good news of stability and easy sailing. Of course, I will update the blog.

2) I am flying next week to England. I have been asked again by Genesis to speak about our family's journey for the new year of students. I will be speaking at 4 or 5 university campuses in 5 days. I will blog about my experience, like I did in February.

Now, this...

In March, I took my kids to the US to visit my Grandma. Three years ago, Grandma was rushed to the hospital and diagnosed with a severe heart aneurysm. She was not given long to live and refused surgery at her age. She was told the best possible outcome was that she had 6 months to live.

At the time of this news, Tehilla was not even a year old. She was unstable, a terrible candidate for her Glenn surgery and was running out of options. Hearing about my Grandma's diagnosis was the most crushing devastating news and worse of all, because of Tehilla's situation, I had no chance to see her or bring the kids to see her. It broke my heart and hurt worse than I could ever explain. But it was what it was. So I resolved myself to calling her frequently, like I already was doing, Skyping with her and sending her frequent pictures of the kids.

But Grandma surpassed their prognosis. Maybe this is where Tehilla gets it from...who knows. G-d I hope she gets it from her and gets so much else from her. Grandma lived 3 years longer than she should have. At every doctor's visit, she was told that she was living on borrowed time.

This past March, Tehilla was stable and Grandma was sick and seemed to be taking a turn for the worst. Quickly, we booked tickets and I took all 3 kids to see her. She got to spend time with them and they with her. They got to experience the outpouring of love that only Grandma is capable of and they have lasting memories from that.


A week ago, Grandma's heart aneurysm tore and she was put on hospice care. She went home to the care of her children and grandchildren who fulfilled any little request short of visiting Atlantic City (while on hospice and a torn aneurysm) and a pastrami sandwich at 8:00 am. I booked a flight with the hope of seeing her one last time. But unfortunately, Grandma passed away last Saturday afternoon.

I was asked to speak at her funeral on behalf of my siblings, cousins, mother and aunt. I cried throughout the eulogy and don't have real memories of if my words properly conveyed who Grandma was. Truthfully, no amount of words can adequately describe the extreme love that out-poured from this woman. Her home emanated it as did her food. She was unnaturally kind and giving and just absolutely lovely. Everything about her.

Being at the funeral and helping my mother during shiva brought a certain form of closure. I stopped waiting for Grandma to walk out of her bedroom and check on everyone. Instead, with my siblings and cousins, we explored the adventures and relationships of Grandma's life by unpacking her photos and talking with distant relatives and her friends she traveled and played cards with.

I arrived home on Friday and feel the mourning with me. The advantage and disadvantage of coming back home is that my life is forcing me to move on. My kids need attending to, my clients need my attention and the fridge needs me to restock it. I wish I had more time to dedicate to just sitting and talking with everyone about Grandma, but life demands I don't. And I know, that Grandma would absolutely want it that way.

Grandma lived her life to the fullest. She told us that she was lucky to have truly loved two men in her life. She went on cruises and trips. She hosted for all the holidays and cooked the absolute most delicious food. She played bridge and poker with her friends. She had her hair done every week or two, as well as her nails. She went out once a week for lunch with my aunt and rented books and movies with my mother and had analytical discussions about it. She would talk politics and literature with her grandchildren.

I know Grandma would want to see us keep living, keep moving. And since I absolutely have no choice, I will. I feel her with me. I felt her presence on Shabbat. I wore one of her silk scarves. I heard her little sing-song voice saying, "Ooh, how lovely. You look beautiful (although she pronounced it bootiful)." The tears will slowly stop coming and I'll feel stronger soon.

May this week bring all that mourn her some calmness and hopefully a boring uneventful appointment for Tehilla.

4th Birthday Party

Today we celebrated Tehilla's 4th birthday. Pictures will be at the bottom.

I really can't promise no tears. I remember those early days too well. When I watched over this little baby, hooked up to machines. Noises and beeps resounded in the room. Alarms went off which sometimes brought nurses running and sometimes stabilized on their own.

She was naked with a bandage over her chest and a diaper on. Nice heating lamps kept her comfortable and a blanket that I had received from Sisters by Heart was by her side at my insistence.

She had blue intense eyes that seemed to be speaking to me and no hair to speak of.

She could destabilize at any moment and be gone forever. I told myself, "She is here for now, but there's no telling what will be in the next moment. Don't dream of the future. Don't hope for tomorrow. Just pray right now."

And everyday she succeeded. Everyday she overcame. Everyday she grew stronger.

She came home and was unstable and fragile for 14 months. She survived. She developed. She achieved. I still told myself, "Don't dream. Don't think about the future. Live in today. Today is good."

She grew, she surpassed, she lived. I started to dream. I started to tell my inner voice to shut up, to let me believe in the future.

She's 4 years old. She can jump and skip and sing and count and drive us all crazy.

Let me tell you about the future, I never allowed myself to dream of. She will go to ballet classes next fall. She will get her ears pierced at age 5 1/2 because she pestered us to give in and not wait until she is 6. She will go to the same elementary school as her siblings and need to be taught to sit still and do her homework. She will be fierce and not allow herself to be bullied, but be kind and befriend the girl sitting by herself. She will scare the crap out of us while she learns to ride her bike and falls repeatedly. The same will happen when she insists on rollerblading with her big sister. She will demand a pet of her own because everyone else in the family has one and we will give in. She will continue to grow and succeed. She will be healthy and strong and perfectly- miraculously- normal.

That is the future that I can dream about.

Integration

We are very blessed with some very incredible aspects of the Israeli education system. Not all of it is perfect. In fact, there are some real challenges, but here is one situation when they get it right.

There is a strong drive for early intervention, in this country. There are systems built to monitor how kids are developing, such as Tipat Chalav (Well Baby Clinic), there are centers designed to help early age development with therapies, Hitpatchut Hayeled (Child Development Center) and then they have school integration programs.

This year, a new program has started where 6 children are selected from every preschool, to receive integrated therapy programs during school hours. It will help kids along that are otherwise lagging behind in occupational therapy, speech therapy and any other development challenge.

Without a blink of an eye, Tehilla's teacher asked for Tehilla to be one of the kids, given her long medical history and of course, without hesitation, I signed the papers.

I just met with Esther, her new integration teacher. She told me, "As soon as I saw Tehilla, I felt there was something special about her. She has such a drive for life and such a big heart."

I responded, "Her thirst for life is directly connected to her- not big heart, but her half a heart." Then I launched into a lengthy medical history.

Her teacher will be helping her push ahead and has also asked permission to do Shiatsu message on her to heal her trauma and help her blood pressure. Power to ya, Esther.

She begins on Sunday. In everything else, Tehilla is doing great and loving life to the fullest.

Shabbat Shalom!

Sukkot

With the sukkah put away and the kids drifting off to sleep, I finally have time to share about how our holiday was. We spent every day creating memories and having the most loving family togetherness moments possible- and y'all know how valuable and meaningful family time is for us. 

This was the first year that we felt Tehilla was stable and strong enough to endure sleeping outdoors in the sukkah with Jerusalem cold nights. We all dragged our mattresses and as many blankets as we owned outside and had the most magical family filled glamping experiences possible. No one was left out- Sammy the puppy and Hunter the cat slept alongside (or sometimes on) us. 

And once again, we were reminded and thankful of the miracles G-d has gifted us. Of the truly blessed existence we have and how amazing it was to see our half hearted warrior princess roughing it in the elements. Her lips weren't even purple! A luxurious (for her) shade of pretty pink!

One evening, our rambunctious 4 year was - ahem- streaking through the sukkah, while I pleaded for some bare minimum clothing. I yelled, "Tehilla! You're turning a bit blue! Get some clothes on!" 

She shrugged her naughty little shoulders and yelled back, "So what! I don't want to! I'm fine!" 

I thought to myself, "You are...you are totally fine...what a miracle..." I still demanded some form of basic decency- miracle or not. 

We enjoyed a Shabbat of the entire extended family and a community BBQ. All 3 kids have spent the past 48 hours fighting a stomach bug, but they are improving. 

I'm sad this holiday has ended. It was an incredible experience and it left us all with some treasured memories. 

Now back to regular routines and the miracles of daily life. 

4!

Today is not just the day that I became a mother with more kids than hands. It's not just the day that our family grew by one more. And it certainly is not a day just like any other.

Today is the day Tehilla was born. 4 years ago. It's the day that we all learnt what we were truly capable of. It's the day that changed everything in more ways than can be listed.

Most importantly it's the day we really truly understood how precious every single day is. That every day is the biggest gift and can't be wasted. It's when life stopped being mundane and became truly magical.

Tehilla, you taught me to believe in miracles. You brought the sparkle in to our life and haven't stopped throwing glitter everywhere- whether metaphorically or literally.

My sweet baby girl, you are 4. We are so blessed to be able to celebrate this day.

Tehilla has been walking over to anyone who will listen to tell them about her Frozen themed birthday party that we will be having after the holidays. She falls asleep at night, listing the food I should prepare, the decorations that need to be hung up and the people that need to be invited.

Happy birthday, Tehilla!

Shana Tova!

Shana tova to you and all of your families! May this year bring joy and happiness to all of our lives and lots of time to enjoy it. We did a family photoshoot this summer, and these are the final photos. We are so blessed to be together and aren't taking a single moment of that for granted.

Sending our love to all of you!

Shadow Approved and Assigned!

It is absolutely amazing to me that when something needs to be taken care of, the right person can get the job done immediately. Yehudit in the municipality should be running the country- I'm just saying.

Well, the Ministry of Education gave the approval for Tehilla to receive a medical shadow full time. She will even have the shadow for the tzaharon (afternoon extended hours)! This morning I got the call that we received approval, and two hours later, our medical shadow called to introduce herself!

She came over this afternoon to start learning about Tehilla and what her job is. She seems very nice and very soft spoken. She has taken first-aid courses, but she will be sent by the municipality for a more in-depth course.

May her job be completely boring!

School Update and Doggy Woes

The update I expected to post was about how wonderful things were going for Tehilla at school. So, I'll start with that.

School is amazing. Tehilla loves school. Loves loves loves! After the first day of school, Tehilla said, "Can I go to big girl school every day?"

The teachers are overly paranoid about Tehilla. They came to me on Day 3 and said, " We let her go out to the play-yard and we made her drink every 5 minutes but she kept sweating and looked flushed. Maybe she shouldn't be allowed to play outside?"

I said, "It's 32 degrees outside. That's normal to sweat. She needs to drink but not that much. It's good you're paying attention."

The teacher asked that we all sit down and I explain to them in more detail how to care for her. We are doing that tonight.

Now for the crazy that went on this weekend. Tehilla, in general, is getting a lot better with Sammy. She is being more gentle and handling her better.  Over Shabbat, we had our first sleepover guests and it overwhelmed Sammy.

Shabbat afternoon, Sammy was hurt accidentally by a kid. She growled and went to lay down. Tehilla went up to her face and started bugging the heck out of her and grabbed Sammy's face. Sammy jumped up and bit Tehilla around her eye.

We immediately applied pressure, but because Tehilla takes aspirin, the bleeding carried on for over an hour. I finally called the on call doctor who immediately referred us to the ER.

While gathering a bag to take to the hospital, the bleeding stopped. We weighed Tehilla's trauma of the hospital against the situation and decided not to take her to the ER and to follow up after Shabbat with the doctor for antibiotics.

An hour later, Tehilla was playing outside and she tripped and hit her same eye on the light fixture. The cut opened and it started bleeding again. That was that- we were going to the ER, even though it stopped bleeding after a half hour.

We got there and the staff was wonderful. They understood right away to give Tehilla space and not trigger any trauma. They were playful and let me handle everything, including cleaning her wound.

They assessed and felt the cut was clotting nicely and didn't need glue or stitches. We showed them Sammy's up-to-date immunization records. She is one shot shy of being fully vaccinated. They wanted an eye specialist to double check her eye to make sure that there was no damage.

We waited hours for the eye specialist who was kind and wonderful but needed the do a full examination of her eyes. While putting drops in to dilate her pupils, Tehilla freaked out and he had to pull on her eyelid. The cut wripped open and blood went all over. We got that bleeding under control. Her eye exam was completed and thank G-d, her eyes were perfectly fine. We got home at 1:00 am.

I'm grateful that in Israel there are strict protocols for dogs. It's unfortunate that we were on the wrong side of things. We were told to report to the Ministry of Health, 8:00 am to insure that Tehilla is fully vaccinated.

We showed up and were asked where our dog was. We said that we weren't aware we had to bring her. The woman explained that because she is not a vaccinated dog, the dog had to be quarantined for 10 days and we would be charged 2000 nis. I simply said, "No."

They called for the doctor and I explained that Sammy is vaccinated and is getting her last shot this week. I explained why Sammy was provoked and is a puppy and this completely is not her behavior. I explained that the dog is a therapy dog for my other child and provides emotional assistance. That taking Samny away would cause extreme distress for my kid. And that this wasn't a stray dog and there was no real threat.

The doctor calmly listened while I went all Momma Dog and said, "I understand what you are saying and it makes sense. These are our protocols. What you are saying is you don't want to open a file and that you are taking full responsibility. That you will watch your dog for 10 days and if anything comes up you will immediately seek medical attention."

I said, "Yes. That is what I'm saying."

She said, "Okay. Delay her shot by 10 days." She then told the woman in charge that we refuse to file.

Tehilla is home resting after barely getting any sleep. She is totally fine and did not pause for a second to snuggle and squeeze Sammy. We had a long talk about giving Sammy space and we will be holding off on sleepover guests for some time.

Whew!

First Day of School

Ron and I are too happy for the first day of school. We have the stupidist smiles on our faces.

Tehilla started Kindergarten today! In a regular school! We don't have her medical shadow in place yet, and we aren't worried at all. Because she is entitled to it, we will get her a shadow, but the woman will be bored and helping the teachers with regular school stuff.

We were the first ones to arrive at school which gave me time to explain to one of the teachers about her heart. I explained that they had to watch that she doesn't dehydrate and that she can tire easily. To look for purple lips or nails or if anything looks off. And that a fall can make her bruise more severely. That she is totally fine and normal and needs to be treated as such.

I also prepared laminated cards for emergencies. It has all the details that a paramedic would need, with all her information and to take her to Hadassah Ein Kerem Hospital. One card remains in her backpack and the school has two to keep on the fridge and near the phone. May they be the biggest waste of time.

Tehilla was a bit nervous but immediately warmed up and jumped right in to coloring and exploring her school. She has a few friends from her previous school, which made her very happy. She is crazy happy with her Frozen backpack, Frozen lunchbox and Frozen water bottle. We also found Frozen school shoes, so she is happier than happy.

September 1, thank G-d!

No Limits

Hi Blog Family,

It's been some time since I really sat down to rifle through my thoughts and get them out on virtual paper. To be honest, this summer has had me struggling to keep my head above water, just in scheduling and trips with the kids and the hellish last weeks of August. This is a post I've been meaning to write for almost 2 weeks...

About two weeks ago, we took the kids to see an ice skating and acrobatics show. We were astounded by the skills, the stunts, and the pyrotechnics. The kids were blown away and couldn't stop talking about it. 

Tehilla was especially taken in by the aerial acrobatics! It truly was amazing. Mid show, she turns to me and says, "I want to do that, Mama. I can learn to do that?"

My initial response was a snicker and a "Yeah, right", as I envisioned our little heart warrior princess flying through the air, suspended by fabric, soaring above ice...

But then I looked into her big greenish blue eyes and watched her micro-expressions of awe and delight, the reflections of the colored lights dancing on her face and her lips curved into a smile of pure joy. And I said, "Yes. Yes you can. You can do anything and be anybody. Nothing can hold you back."

This little interaction really explains where my headspace has been. I spent so long fighting for her life. So much time spent on worry and fear. Now that we have reached this period of calm and stability, my job has changed to fighting for her to live life. 

The days of worry and fear are not behind us. We know that the future will bring many more periods of unrest and medical challenges. We aren't fooling ourselves. But while we have peace and calm, we will make sure that Tehilla has every opportunity to live her life to the fullest and with no limits. I'm not saying we are enrolling her in aerial acrobatics at age nearly four (wow!). But I'm saying we won't be holding her back. That little princess will be allowed to follow wherever her perfect half a heart leads her. 

Too Much Puppy Love

We were perfectly prepared for Sammy, the puppy.

Collars and name tags- check.
Leashes and dog crate- check.
Dog toys and water bowls- check.
Check if your 3.5 your old is a raving jealous overly excited madwoman who picks puppies up by the face...oops. Missed that one.

So Sammy settled in nicely but Tehilla got a serious case of "new baby/jealous sibling syndrome" and we have been scrambling ever since to help her adjust and give her attention and teach her not to smash puppies skulls. It's been fun. (That was the sound of my eyes rolling).

We have Sammy nearly housetrained and sharing a peaceful existence with Hunter the cat. She has learned come, sit, down, let go, look at me, dance, paw, and is making a lot of progress with stay, and leave it. She is sweet and affectionate, smart and playful and has been an amazing new addition to our family.

But hardly an hour goes by without someone screaming , "Tehilla! Don't pick the puppy up by her ear!" Or "Stop squashing the puppy!" We are making progress and teaching her how to properly handle the puppy. We will get her adjusted with time...

Tehilla has been put on an antihistamine because we think she has allergies and has had a dripping nose for over 6 months without any relief. So far there is improvement.

Otherwise everyone is surviving the summer and providing the perfect amount of crazy for us to be counting down the days until school starts.

Mine is Pink

When I came to pick Tehilla up from school yesterday,  her teacher said to me, "Something is not right with her.  Her color looks off to me and she is low energy. I couldn't find her pulse ox to check her, but something isn't right."

I looked at Tehilla, who was pale and had swelling in her forehead (something that happens to her when her oxygen dips, her eye was pink and she looked unwell. She looked down at the floor and whispered,  "I took it (the pulse ox) out of my bag. It's at home."

Of course all the batteries of all 3 of our pulse oximeters were dead, but once we found replacements, we checked and her oxygen was at 80. Her baseline is 85-90. It's not critical but it's not good. Her heart rate was 101, which is perfect. She had no fever, so I made her an appointment with the on-call doctor. We lucked out and got our favorite, aside for our regular doctor.

We walked into the doctor's office and she was calmer than she usually is. She didn't want to talk to her.  I explained why we were there. The doctor took out her pulse ox and said, "Let's take a look how your oxygen is now. Can you give me your finger? Do you have one of these at home?"

Tehilla offered her finger, smiled and said, "My pulse ox is pink. Yours is black."

The doctor laughed and said, "You are so lucky that you have a pink one. I need to find a pink one."

She checked Tehilla thoroughly and found nothing except a double eye infection. Her oxygen was at 84. Drops were prescribed and we were told just to keep a look out. This has happened quite a few times- a dip in her oxygen as a response to an infection and/or pain.

She's doing better today, but a bit off still. We will keep her home today and see how she does.

Sammy Balofsky!

We are welcoming to the family our 7 week old golden retriever puppy, Sammy! Sammy will be Tzviel's dog but an important part of our family.

With all that our family has been through, it has taken a big toll on everyone in our family. Some TLC from a very sweet, affectionate dog will provide some stability and animal therapy for years and years. 

We have been working on this for over 6 months and have everything ready. Tzviel and I have been watching dog training videos. He has been practicing on Hunter, Mechal's cat, with no luck.

Speaking of which, yes- Hunter is staying, no- we aren't worried. We consulted our vet and Hunter is comfortable around dogs in our home.

We are very excited for this new transition. For the next bunch of weeks, we will be limiting the guests into our home, until some basic training has caught on.

Wish us luck and send Sammy some blog family love!

Beach Bum Fridays

Summer is here and that means we take every opportunity for family time- especially on the beach.

Once again, given the opportunity to be in our happy place, the place to me that cultivates all our milestones of stability and calmness. We were so blessed to spend Friday on the beach. Tehilla frolicked, skipped, ran away, built sand castles, buried Ron in sand, laughed and enjoyed.

It was a perfect day. We were just another carefree family soaking up the sun and enjoying the beautiful turquoise water. I wandered into the water and was reminded of all the times I've been there at different stages of our journey. All the times I've whispered prayers into the sea breeze, washed my tears away with the water, or held my baby in heart failure. But this time, it was only joy. Only prayers of thanks.

The only thing notable was how well Tehilla did in the heat. While she still overheats quicker than most, overall she is definitely getting stronger and handled the heat better than ever.

We thank G-d for every opportunity to enjoy family time and count our blessings. Thank G-d.

Happy Heartiversary!!!

Dear Tehilla,

Yesterday on July 3rd marked your Heariversary, the anniversary of your most recent heart surgery. My Tehilla- my beautiful, strong, funny, remarkable, energetic Tehilla, I can't begin to explain to you what it means to be a year post-Fontan. You, my sweet darling, about who it was said would have poor quality of life, who had a 45% chance of making it over the age of 5, you who never shy away of throwing frightening complications into the mix- you have made it to a year post-Fontan.

There are whole days, my sweetheart, whole days that go by that I completely forget. There are days that go by that I don't worry. In fact, just the other day, your Abba and I were discussing if you even needed a medical shadow next year in public preschool, since you are so completely stable (please don't let the municipality or Bituach Leumi be reading this!). In the end, we will be requesting it, just as a safety net. But to think after all that you've been through, after all the miracles that have happened for you, that we would- that we could- feel this good about your health and stability...It's mind-blowing.

We spent the day today having ice cream with grandparents and splashing around in a little pool outside. We couldn't have asked for a more happy and peaceful day. We couldn't bless G-d more, for the amazing miracles and blessings that have come our way and the feeling of thanks for each and every day.

Tehilla, you are a song of Praise to G-d. Every skip in your step, every note of "Let it go" that you sing repeatedly, every pink item that you carefully curate in your wardrobe- everything about you makes up the great miraculous song of Praise to G-d.

Happy Heartiversary, sweet Tehilla.

Love,
Ima

 

Threenager

Okay, okay, okay! I'm sorry I haven't updated in 15 days! Does it make it better if I say all is great? If I say that days went by that I forgot that we are a heart family with a kid with a critical CHD, are we good?

Because 2 weeks went by without illness,  without fear or without worry. Tehilla is doing so well that she has taken on a whole new persona...

She is a threenager. She is demanding, outspoken, extremely naughty and fabulous in every way. She causes constant trouble, picks fights and has us wrapped around her finger.

We have also noticed a new side of Tehilla that stunned us.  Ron and I were sitting outside one Shabbat morning, drinking coffee and chatting before shul. Tzviel was sitting between us while we sat on the half wall of our garden. 

Tehilla comes running up, grabs Tzviel's hands and in the sweetest voice says, "Come Tzviel! Come with me!  Come inside with me."

Listening to her angelic voice, he follows her inside. As he walks in, she turns around and runs back and sits in his spot with a devilish smile...

We were completely shocked!

And with that, I leave you to enjoy more calm and peace. Thank g-d!

Cherry Picking Festival

A part of Shavuot was spent worrying about Tehilla's health as she once again developed a runny nose and a very bad cough.  The past few months have been cough after cough. While her oxygen levels have been great, she has been having a hard time handling the constant respiratory troubles.

So Friday was one of those times when we focused on living in the present and loving family time. We let our kids miss school and we headed out early to the Cherry Picking Festival in Gush Etzion.

We had a great time picnicking, getting cotton candy, exploring the booths set up, and picking cherries. Despite getting there early, we had a hard time finding cherries. We searched and searched and finally made our way to the complete end of the orchard where we were rewarded with plentiful trees.

We had a blast and enjoying eating the picked cherries on Shabbat. We again were given the chance to examine our blessings and appreciate time together as a family.

Happy Shavuot!

Thank g-d, Tehilla has been doing very well. Rambunctious and trying her luck at bending all of the rules.

Her latest obsession is Frozen and ballet. She keeps twirling and spinning and asking if she can go to ballet classes "to be a real ballerina."

Happy Shavuot to all of our blog family!

Let's Talk PTSD

I've been very candid on our family's journey with Hypoplastic Left Heart Syndrome.  Anything that is heart related and sometimes things that are not, I post on this blog. But there's an entirely other side to being a heart parent that I haven't been open about. That is the psychological aspect.

I'm a big believer in mental health awareness and I believe strongly that the taboo surrounding these mental illnesses are harmful and outdated.

It is important for me to talk about this side of our story- not just for the sake of being open and honest, but more importantly for the current and future heart families that read this blog. This part is too overlooked and needs to be known. I've had many heart parents open up to me about this part of their struggle and I want them all to know that they are not alone and how perfectly normal it is.

I'll explain by starting in the middle of it all. Last week, I was putting Tehilla to sleep. She has been particularly difficult at night times lately because she's at that frustrating stage where she can't decide if she needs her naps or not. So instead she refuses to sleep and has learned the skill set of procrastinating bedtime. I had sang our Shema bedtime songs and told her a made-up "Princess Tehilla" story and was lying down with her in bed.

She then asked me to sing her a song. A "Tehilla" Song. I told her that when she was a baby I used to rock her to sleep and sing her a Tehilla song. It's to the tune of Lullaby and Goodnight but the words are just "Tehilla" over and over again. It goes, "Tehilla Tehilla Tehililililila Tehilla Tehilla Tehililililila..." You get it. 

She asked me to sing it to her. So there we were sitting in her pink and polka-dotted room, on her pink blankets and I start to sing her the song. It was at the "Tehililililila" that my voice cracked and tears sprang to my eyes. I tried to blink them back and sing on, but instantly my mind took me back to the times when Tehilla was just an infant. I would rock my very purplish baby to sleep and wonder if she would make it through the night. I would softly cry while singing her this song, my heart praying and begging G-d for another day with my baby girl. 

I sang this song to her after surgeries, trying to soothe her pain and discomfort and again, softly crying and begging G-d for her health. 

I hadn't sang that song in two years and in that one instant, last week, I felt the complete weight of the stress and anxiety that we endured daily during her first 14 months of life hit me and I just desolved into uncontrollable sobs. 

The heart parents reading this are nodding their heads in agreement and I have now triggered their own PTSD.

These episodes of post traumatic stress disorder don't happen frequently anymore.

I used to love to cook and at one point had even enrolled in culinary school to become a pastry chef but changed my mind and became a graphic designer. The harder and more complicated the recipe, the more I relished in accomplishing it. But quickly after we brought Tehilla home for the first time, did I bitterly begin to despise cooking. It would be the time daily, when my hands and eyes would be busy, but my mind would begin to wander.

And wander it did. I thought about how much longer we had with Tehilla, if we would get a chance to celebrate a birthday with her, how we would cope without her, and how we would help our other two kids cope without her. Cooking quickly became anxiety attacks that I would blame on cut onions. Doesn't everyone have anxiety attacks from cutting onions? Our menus immediately changed to whatever I could cook within 10 min and that helped me avoid quiet time to think.

It's definitely a very positive sign for me personally that I no longer have anxiety attacks when cooking and I have begun to start cooking gourmet food again.

It's important for me to explain that I have PTSD and have been living with it since Tehilla's pregnancy. I am most definitely in a much better place right now, but every now and then something triggers it. You'd be hard pressed to find a heart family that doesn't suffer from PTSD.

This journey has changed every person in my family. I've put my family in the spotlight enough so I will give my kids the courtesy of not explaining in depth how this journey has harmed them. You can imagine what the instability of us running constantly to the ER or doctor without a moment's notice, sometimes in middle of the night, would do to two small children. None of us are the same as we were before.

We have learned to live in the moment and be extraordinarily appreciative for every blessed day that we have with each other. We live life to the fullest and are more outspoken. We have found parts of our personalities that we didn't know existed.

Our lives have changed for the better since we had Tehilla. She has taught us how to fully live. It just hasn't come without a hefty price for all of us.

Extremely Well

Tehilla gave Dr. Golander the silent treatment but at least she wasn't screaming and crying.

Her heart is doing extremely well and we will continue on with the exact same medications and dosages.

The pressures in her heart are still a little too high to close the fenestration (hole left for the bloods to mix). So we will just watch and wait.

Her blood pressure was fantastic which for her is a HUGE win! Her heart rate is great and so is her saturation!

A great appointment! We come back in 6 months.

Cardiology Appointment Today

Because of our trip to the US, Tehilla's cardiology appointment checkup was postponed. She is stable enough for this not to be a problem.

Driving to the hospital is practically a reflex at this point. No attention is needed for directions. It's second nature. To be honest, it means my head is flooded with thoughts and worries.

These appointments are so important but also bring with them an anxiety. The what-ifs take hold and I find myself whispering Psalms while driving.

I'm not the only one combating anxiety this morning. Tehilla heard she was going to the hospital for an appointment and her eyes went wide and she screeched "NO!".

So we have now had several conversations about this being a "friendly appointment" and not a scary one. They will only put funny feeling gel on her chest and take pictures of the inside of her heart to keep her healthy.

She panicked before her vitals were taken but calmed down for a nice blood pressure reading. She hopped off the chair and said, "That was friendly!"

Now we are waiting for our appointment. I reduced MY anxiety by not taking care of the insurance paperwork which without fail always gets messed up and sets us back by hours. I paid privately and will just apply for the refund. If this works out nicely, then this might become my new system.