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.