Sunday, April 24, 2016

Happy Pesach!

Happy Pesach (Passover) to our blog family! We had been crazy busy leading up to the holiday. Now that it is here, we are enjoying the time with family and friends.

We had a seder with our family and it was an incredible time filled with laughter and fun.

Tehilla went to sleep before the seder even began.  However, earlier in the day I asked her if she knew the "Ma Nishtana" song, a song sang especially by young children at the seder and taught in schools. She said yes and when I started singing the tune to her, she rolled here eyes, stomped her foot and yelled, "I hate that song! Stop!"

Now, we will be enjoying daily outings while making sure to keep Tehilla hydrated during the extremely hot days up ahead.

Here are some pre-Pesach pictures!

Monday, April 18, 2016

Feeling Thankful

So, now that my adrenaline has gone down, other than being exhausted, I'm surprised by what happened, but so thoroughly thankful and in awe of Tehilla's teacher. Often in life, we need to take a leap of faith in ourselves and in people. Putting Tehilla in school was more like skydiving without a parachute. We knew she would get sick often, we felt comfortable with the school and more specifically the teacher- but we really didn't know. We really just let go and hoped for the best.

Tehilla's teacher made all the right calls. She observed and watched, she remembered all of the signs to look for and she made the call. I'm beyond grateful to G-d for sending us the right partner in raising Tehilla. I thanked her profusely, but I really feel so unbelievably lucky that when push comes to shove, Tehilla is in very good hands.


Tehilla's oxygen level is back up at 78/79. I'm comfortable with that. She's a bit pale but otherwise fine. When I went to measure her saturation she said, "Leave me alone! " So...back to being a 2.5 year old.

We are staying out of the ER. I will check her oxygen levels every so often.

Thank G-d.

Let's hope

This morning Tehilla wouldn't stop crying. She ate a bit of breakfast and otherwise seemed okay, so we took her to school.

I was actually in the middle of writing how we have been busy with Pesach cleaning and preparations and that is why I haven't updated in awhile.

Then, I got a call from Tehilla's teacher. She hadn't stopped crying since I dropped her off, she wasn't eating or drinking and she looked blue.

I had the teacher measure her oxygen saturation and it was at 76. I quickly left where I was and ran to the school. On the way, I called our cardiac nurse and our doctor's office. The on-call doctor would see her immediately.

Tehilla was indeed purple and her color was off. The teacher said she had checked again and her saturation went down to 72. She was crying and wouldn't calm down. I checked and her saturation was 76 and heart rate at 146.

I (sped) drove to the doctor. He checked her and didn't find her breathing abnormal. He did find that she had an ear infection in one ear. He checked and her saturation was at 73 and her heart rate at 126.

While Tehilla occasionally desats when sick or when crying hysterically, her oxygen has never gone that low. The doctor is unsure if this is all from her ear infection. She was prescribed antibiotics and Otidin, an ear drop that instantly numbs the pain.

He told me to give her the prescriptions and if she stops crying immediately that's a good sign that it is her ear. Then to wait until she is calm and check her again. If her oxygen returns to normal, then this is all her ear and nothing more.

But if she doesn't calm down or her saturation does not go back up, then to go straight to the ER.

So far, she calmed down immediately. A good sign. Now,  I'm going to wait a bit and then measure. Hopefully, there is nothing else going on.

Thursday, April 7, 2016

Train of Thought

After I got the call about the Fontan, I was in some sort of haze. I don't remember driving to the store. I had a carefully written shopping list by Mechal and what should have taken me 20 minutes, ended up taking me an hour and a half.

My thoughts went something like this:

Plasticine. Right. Where is the plasticine? Liz called. The doctors had their meeting. Fontan. Fontan? FONTAN! Oh no- Fontan. Okay, breath. What was I looking for? Plasticine. Right. Why am I in the towels section? Okay, concentrate. Plasticine. Here it is. How much does she need and which colors? Her sister is having heart surgery- she can have all the Plasticine in the store. Okay, that's going overboard. Two packs should suffice.

What's next? Fontan. We first heard about the Fontan when we learned that Tehilla has HLHS. It seemed so far off. Like an unattainable goal. We had to surpass so much to get to the Fontan. Norwood. Norwood recovery. Interstage. Glenn. Normal life and then Fontan. Of course, we had an extra surgery. Tehilla has always made her own way about everything. Even from the beginning.

Where am I? Right, I'm supposed to be getting containers for meat. Here is the container section. My G-d, that is a lot of containers. Who cares about containers? Surely, any of these can do. I mean, Tehilla is having surgery. Again. My baby is having surgery. Wait- focus. I'm pretty sure that normally you do care about what kind of containers you have. Why did you put truck shaped containers in your cart? What use is a truck shaped container? Okay- just pick one.

Next- black magic paper? What is that? Oh, the black paper that you scratch away at. Can we do it again? Can we ask for another miracle? There's got to be some kind of family limit or something- no? Have we used up our quota? Quota be damned.  We need another freaking miracle. So, that's just what it will have to be. Tehilla. We named her Tehilla. G-d will be praised when people see the little girl with half a heart. Tehilla. Praise.

So, you can imagine why it took an hour and a half for that shopping trip and I came home with only some of the items on my list and some baffling choices on what I did purchase. That haze lifted the next day, and now we have just been trying to focus our attention on what it means to ask- yet, again- for a miracle.

My next post will be a plan of action. A plan of action for a miracle.

Monday, April 4, 2016


I just got a call from our surgeon's secretary. Our team had a meeting today and decided that Tehilla should have her Fontan this spring!!!

It will be on Sunday, June 26th.

We go in on the Thursday before for testing.

I'm choking back tears of happiness and amazement.

Team Tehilla, we are about to step up our game in all respects. Stay tuned...