RSV Shot #4

Tehilla went for her fourth RSV shot today. She handled it like a champ and cried for only a few seconds after the shots.

For the past week, she has been utilizing all of her skills to wake us up between 4:00 and 5:00 am. She smacks her lips together and screeches until we take her to eat breakfast. Well, we found out why. It seems that she went through a growth spurt. She went up in weight to 9.700 kg (21.34 lbs). That's 600 grams in one week!

She has been progressing and doing well on all fronts. We are so thankful to G-d, to be able to see such remarkable health. If you didn't see her scar poking out, you really would not know that this child has half a heart. It's truly an unbelievable blessing!

And yes, she's spitting for the camera in the second picture!

Walking!

Every day, Tehilla is trying more and more to take a few steps on her own. Today, she repeatedly kept trying and I caught it on camera!

Half a heart and princess heart warrior! Thank G-d!

Snow Day

Here in Jerusalem, we finally got a real snow storm! We didn't take Tehilla out to play in the snow yet, but we probably will later, and I'm sure I'll post some more pictures then.

We went out, played in the snow, built a pirate snowman and threw some snowballs. It is expected to keep snowing throughout Shabbat! Ron and I both grew up in Toronto, so for us, this feels just right.

A Very Happy Appointment

Today, Tehilla went for her appointment with our cardiologist, Dr. Golander.

As soon as we strolled into the cardiology department, Tehilla tensed up. Fortunately/unfortunately, we had a long wait before our appointment and this gave her a good chance to relax and play a bit. She calmed down and started playing with all the cardiologists, as they walked by, and offered to share her pretzels with them.

I weighed her before we left the house and she is 9.100 kg (20.02 lbs). She is going up steadily in weight. They measured her pulse ox which was 81 and her blood pressure. Her blood pressure was a bit high, but not as high as it has been.

Unfortunately, the blood pressure monitor I bought was not the right size for her, and we are in the process of contacting a medical supply company here in Israel to try to purchase one.

Dr. Golander did the echo, while Tehilla watched Elmo's World on my phone and she was very cooperative and happy.

Her heart function is better! Much better!  Dr. Golander repeatedly said how happy he was with her improvement. He said it was both because of the medications that she has been taking, and because her body is just properly adjusting after her surgery. He wants us to measure Tehilla's blood pressure at home, as soon as we can.

He also felt that it was time to make an adjustment to Tehilla's "salad of medications." He is taking Tehilla off of Digoxin. As he said, "It's time to adjust her medications, and the first to go, should be the toxic ones." So he said, "Let's ditch the Dig!" He has also raised her dosage of the newer blood pressure medication, Carvedilol.

At the end of the appointment, I asked him what he thought about me flying with Tehilla to the US, to visit some family. He said that she was stable and post-Glenn and doing well and felt completely confident in us going for a visit. He is preparing a letter in English, for me to have on hand, in case, G-d forbid, there was an emergency.

Thank G-d, her appointment went so well and she has made such big strides! I am teary eyed with happiness. And I can't believe that he approved us to fly to the US.

Tehilla has still not had her MMRV vaccine because she has to be 3 months post surgery for it. That means in two weeks she can get it, and we certainly will not be flying to the US without her vaccinated, especially with the current measles outbreak.

So, now we have some pretty happy and exciting things to plan!

Picture

I haven't posted a picture of Tehilla in a few posts, so here you go!

Happy and Playful

This past week was very busy, so I apologize for not updating the blog. 

Tehilla is doing very well. She has taken several steps, but overall is afraid to walk. We have not captured any of it on camera.

She loves going "bye-bye" and points to everythibg and says "this?" with a questioning tone and we explain what everything is.

She has also ramped up her naughtiness to a whole new level. Apparently it is incredibly funny to snatch clean laundry that I have already folded and cruise her way over to the garbage bin and throw it out. I made the mistake of reacting strongly which made her laugh, so now it's a favorite game that she plays. 

She has also discovered electrical outlets. We have covers on them, but we still warn her not to touch them. Now, she loves to crawl over to them, look at me, look at the outlet, look at me with a mischievous smile and a twinkle in her eye. I shout "NO! THAT'S DANGEROUS! NEVER TOUCH AN OUTLET!" And then she begins to let out a long drawn out fake cry. She'll throw her head back and fake sob. Then put her head in hands, fake cry some more, then look up and smile that mischievous smile again.

We have an appointment with her cardiologist this week on Wednesday. Can everyone please pray that her medications have been helping and that her heart function has improved? Pray for good news!

Reoccurring Ear Infection and Proud Mama Moment

Last night, we went to see the on-call doctor. Tehilla's ear infection came back. She is starting Augmentin. Unfortunately this has been happening too much and the time has come to see an ENT. 

The past bunch of nights are a blur from Tehilla waking up. She would wake up in middle of night and out of desperation we would put her in bed with us. Her cute little body would lay down and she would rest for a bit. Then she would pop her head up and say, "Hi!"

"Hi. Go back to sleep.  It's sleepy time."

She would  lie down once again and then pop her head up, crawl over and kiss me on the lips. Then put her head down. Then pop up again and put her head down on my head.

"Tehilla... sleep. Please sleep." So she would again lie down. Once she stood up in bed and started giggling. "Tehilla...no. It's not time to play. Just sleep." Upon hearing the dreaded word "no" she would then burst into tears and have a whole long temper tantrum. 

Hopefully this antibiotic will help her.

On Shabbat, Mechal had some friends over. One of them noticed that Tehilla's shirt hung down and saw her scar. The girl gasped and said," Oh! What happened to her?" I answered the girl, " Mechal's sister has a special heart."

Mechal then added," My sister had 3 heart surgeries. That's her scar. "

The other girl freaked out and said, "Ewwww! That's gross! I don't want to hear anymore."

Mechal very calmly said, "It's not gross. Don't say that.  It's my sister's body. She was born with half a heart. It's amazing. "

My face hurt from the stupidest proudest smile I had on.

The girl just shrugged her shoulders and said, "Oh. Okay."

This journey has certainly changed all of us and I really couldn't be more proud of my kids.

First Steps!

Tehilla took two steps!

Wear Red Day

So, here it is, National Wear Red Day! Tehilla is rocking her scar to spread awareness. I hope you've got something red on, and are prepared to join Team Tehilla!

We thought we'd show off a few of our amazing accomplishments, all done with half a heart!

Tehilla is standing by herself:

She also is pretty super cute and loveable:

And most importantly, she is alive, healthy, thriving and happy!

And on this special day, we wouldn't want to leave anyone out. So a shout out to Dr. Big Nose. Here's what we think of you refusing to give us information, not making eye contact and telling us Tehilla would not have good quality of life! Tehilla was smart enough to keep this to a family rating.

Awareness

Let's talk about awareness for a moment. Friday, February 6th is National Wear Red Day in the USA. It is a day designated for people to wear red and spread awareness about children with congenital heart defects. February is considered Heart Awareness Month.

Many people don't understand the importance of awareness, and have expressed as much to me. I'd like to tell you a little story that happened about a year ago.

Right at the beginning of starting up Little Lev, I went to print some posters to disperse to the hospitals. I was in the center of town, in Jerusalem at an office supply store. My friend works there and we were chatting, while she finished printing up the posters. Another friend walked into the store and all three of us were talking. Tehilla was sitting calmly in her stroller.

As my friend rang up the posters, I noticed the customer behind me in line, staring intently at our Little Lev poster. I smiled at her and she said, "What is that? What is that for?"

So, I explained to her that Little Lev is an organization that I was starting to help families of children with congenital heart defects.

She responded with, "What for! Why do you need an organization for that? It's really not a big deal."

I'm pretty sure that my mouth hung open for quite a few moments, before I responded, "Um...It is a big deal. Families need support and a place to go to for education and help. That's what this organization is for."

She said, "Yeah, but these heart defects- they just go away on their own. What do you need support for that?"

I calmly said, "Um, no. Most heart defects do not go away on their own. They need intervention-"

She cut me off and said, "Yeah, yeah. My neighbor's grandkid had a heart defect. It was a hole in his heart and then it closed up on it's own. You're making a bid deal about nothing."

I quickly whirled my stroller around, for her to look at Tehilla and pulled down her shirt, exposing Tehilla's scar. "My daughter was born with half a heart. (At that point) She has had two surgeries and needs two more surgeries. We hope and pray and do everything, but we do not know what is in store for her in the future. This will not go away on it's own."

She was completely stunned.

I said, "You are talking about a very uncomplicated VSD. There are more than 34 heart defects and many of them, even VSDs need surgery. Not all of these children survive."

The woman looked deeply at me and said, "Whoa. I- I- I never knew. I had no idea. Good for you. Bless your daughter. May she live a long life. Wow."

Awareness is not about attention. It is not about sympathy. Awareness is about creating a better future. 1 in every 100 babies born has a congenital heart defect. Believe me when I tell you, that you never expect to be that small statistic. But we are.

Out of all babies with a congenital heart defect, only a third of parents find out during pregnancy. Another third find out at birth. And the last third of babies born with a congenital heart defect find out when it is too late.

That's just unacceptable. Awareness is about me, telling you, that if you have a family member or yourself are pregnant (Congrats!) then here are 5 important questions that you should ask at your 20 week ultrasound:

1) Is the heart rate normal?

2) Do you look at the arteries as part of your scan?

3) Are the heart and stomach in the right position?

4) Do you see 4 chambers of the heart?

5) Is the heart function normal?

Awareness is me informing you, that it is your right and your duty to ask questions and educate yourself.

Awareness is me telling you how essential it is to request a pulse oximetry text before taking your sweet little bundle of joy home. It does not hurt, is non-invasive and costs nothing. It is simply that clamp that they put on a finger with the red light. It just checks the oxygen level in your baby's blood and can actually be the difference between life and death. Thanks to many heart mamas in the USA, it is becoming a law that all hospitals must check before sending a baby home. One day, I hope that us heart mamas here in Israel can push for the same thing.

Awareness and support lead to research and advancement in medicine. It can one day lead to all heart defects being found during pregnancy. It can actually save lives.

So, pretty please, be a part of our Team Tehilla and support and raise awareness for congenital heart defects. Post on Facebook, Twitter, Instagram or send us pictures: tehillasheart@gmail.com. Just join us in spreading awareness!

New Words

Thank G-d, Tehilla is doing well. She has been causing all kinds of adorably cute mischief at home. It's amazing how improved life is after the Glenn surgery.

In the past two days, Tehilla has tried to say a few new things. The first thing that she tried to say was "Whodiddat" or what we translated it as, "Who did that?"

Tonight, at dinner time she blew on her food and whispered, "It's hot!" We'll see if she actually repeats these little phrases.

Tehilla loves to "read" to herself. She often crawls or cruises into her room and pulls down a huge assortment of books from her shelf. She will then sit there, and go through each book slowly, turning the pages and sometimes babbling to herself.

Other than that, this little princess heart warrior is rocking her half a heart.