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.

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.

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.

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!

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.

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.

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!

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!