Heart!

I must  share this little tidbit. Tehilla has learned where her head, nose, teeth, tongue, hands, tummy, feet and toes are. For the first time ever, she noticed her scar. She pointed to it and said, "This?" I told her, "That's your heart. Heart." Then I took her hand and put it over her scar so she could feel her heart beat. She felt it and started laughing. We did this a few times.

Then I said, "You have a very special heart, Tehilla." It kind of made me tear up as I remembered my first blog post. I was pregnant and we were just finding out the details of HLHS and trying to understand the diagnosis and making a choice whether to go ahead with the pregnancy.This is what I wrote:

"This blog is a little secret, for now.  We'll see if I ever get a chance to open it to the public.  It's about a little girl, named Tehilla.  She's still a fetus right now.  That's why this has to be secret.

Right now, I'm 20 weeks pregnant with her.  I can feel her kicks and I've seen her little heart beat on the ultrasounds.  Her heart is what has gotten me here in the first place.  It's quite unique, and special, I imagine we'll tell her when she's older.  Tehilla has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a rare and severe heart defect.  We just had that diagnosis confirmed yesterday.  My heart broke, as the doctor described a very sad and scary future for her.

We've been given an unimaginable burden to decide whether to terminate this pregnancy.  We are so overwhelmed with this decision.  We have an appointment with a genetic counselor on Tuesday, to help us understand the big question of "quality of life."

Well, I got to tell her! This has been one crazy ride, but I repeatedly thank G-d that it has led us here.

ENT Appointment

We had Tehilla's ENT appointment today. The entire appointment lasted a few minutes. The doctor scanned her card and then said, "Yes, how can I help you?" I told him that we discovered that she had a lip tie on her upper lip. He looked at the computer and asked how her heart was. I told him that she was in a stable place (best feeling in the world to say that!!!). He went and looked at her lip tie, as I held her nearly upside down and then said, "Is this the worst thing that you are dealing with right now with her?" I said, "Actually, yes, it is." He said, " Thank G-d! That's wonderful!"

He gave me a referral to Hadassah Ein Kerem's Oral and Dental clinic and said to make an appointment and they will cut the lip tie.

While I showed the doctor, Tehilla's lip tie, I noticed that her front tooth was a bit off color in one spot. Later I took a look again. Sure enough, Tehilla is getting a very visible cavity.

Now before I start getting a lot of messages and emails about cutting out sugar and proper oral hygiene, you should know that this is completely related to being a heart kid. I promise we brush Tehilla's teeth every day. It is a very common thing amongst heart kids to have serious problems with their teeth, partly due to the medications that they take.

It's a good thing that we are going to our hospital's oral clinic, because that's the only place that I would take Tehilla for dentistry work. I can not believe that she has a cavity already, but I had been warned about this by a dear heart mama friend.

Et!

Well, thankfully, the Bednisol did not have Tehilla running around screaming "chicken". In fact, as soon as we gave it to her, she went and took a nap, and it really didn't seem to make her hyper at all. It completely took her croup away and she is doing much better.

Over Shabbat, I realized that Tehilla is teething again which explains the constant crankiness. Last night, she started having some pretty bad tummy troubles, so we'll see how today goes.

On Shabbat morning, Tehilla insisted in me putting water in her sippy cup without the lid on. As expected, when she drank from it, she spilled water all down her shirt. She looked up and said, "Ooooh! Oooh! Et! Et! (wet)" and then got up and toddled to her room and went to her dresser and screeched for me to open her drawers. She then pulled out a bunch of clothing and screeched "Essed! Essed! (dressed)"

I realized on Friday that I've been so busy with work, kids and cleaning for Pesach, that I haven't pulled out my camera for a month. Tehilla did not cooperate that much. Well, here you go...

Physical Therapy Appointment

Yesterday, Tehilla had her follow-up appointment with her physical therapist. While we waited for our appointment, Tehilla scampered around the area, playing with balls, climbing stairs, playing with mirrors and beads. Another physical therapist who was training a student physical therapist, started to observe Tehilla. She asked me how old she was and how long she has been walking for (about 2 weeks). They started to discuss their observations of Tehilla, assuming that we were there because her only problem was delayed development of walking. I told them that if they wanted to observe her, they should be aware that she had 3 heart surgeries and many medical hospitalizations. They asked what her heart defect was and were stunned to hear that she had only half a heart. It was really sweet to see how in awe they were of her general health and development, given her heart defect.

Our therapist came and was thrilled with Tehilla's progress. She is not only walking, but able to handle a drop in floor level (going from a floor mat to the floor), she bends down, crouches nicely and lifts herself on her toes perfectly.

I explained how the other day Tehilla became out of breath from walking with a slight incline. They said that when she is older, there will be more to do to help her learn how to breath in a more effective way.


When she walks, she does a few things with her right foot that probably is because she just started walking. She turns her right foot out, rolls it inwards and even sometimes just drags it. They were not concerned and felt that it would probably work itself out. She is terrified to go down stairs, so we need to practice going down from the couch and beds.

They want to see her again in a month to keep observing her progress and make sure that she corrects her walking with her right foot.


A number of weeks ago, while at my brother-in-law and sister-in-law for Shabbat, I was talking about Tehilla with my sister-in-law. I mentioned that we could never see Tehilla's top teeth, unless we hold Tehilla upside down. My sister-in-law asked us if we had noticed if Tehilla had a lip tie on her upper lip. Later, I turned Tehilla upside down and pushed her upper lip away from her teeth. Sure enough, Tehilla has a lip tie going from her gums to her lip. I've been wondering if it could be related to Tehilla's speech or lack there of.

I mentioned it to our doctor and we have an appointment with an ENT for Sunday. He will probably refer us to a doctor in the hospital and we will have it cut there.

I mentioned this to our physical therapist and showed her Tehilla's lip tie. She has never seen a lip tie on an upper lip and she decided that it couldn't hurt to call in a speech therapist and ask her opinion on if it could effect Tehilla's speech. A speech therapist came in and also had never seen a lip tie in that location. We discussed Tehilla's speech and she said that based on the sounds she has made, it probably doesn't effect her speech, but it could later effect how clearly she pronounces words and agreed that it should be cut.

She was incredibly nice and was amazed to hear Tehilla's heart story. She decided that it couldn't hurt to monitor Tehilla's speech, as well, and make sure that she is progressing. So, she booked us an appointment for immediately after our next physical therapy appointment.

All in all, I love this Child Development clinic. I think they are wonderful and I love their attitude towards Tehilla and their real desire to help Tehilla in any way possible.

The only other thing significant to write is that Tehilla woke up this morning with a small case of croup. She has been given a one time dose of Betnisol. I personally hate this medication from when we used to give it to Tzviel. It makes the kids hyperactive. When Tzviel took it, he used to crawl in circles or run back and forth in our house at 12:00 am yelling "chicken".  Let's hope Tehilla doesn't have as strong of a reaction to it.

Knowing Limits

Thank G-d, everyone is healthy and well. Before we could get various tests done, Tzviel and Tehilla both quickly returned to themselves and are doing much better.

Tehilla also went for her 5th and last RSV shot for this winter season. Hurray! We'll see where she is health-wise next year, if we want to submit a request for her to receive them again.

Today, I was reminded that Tehilla has half a heart, and ridiculously enough, it took me by surprise. Tehilla and I went first thing in the morning to the post office to pick up a package. On our way out of the post office, I put Tehilla down and let her walk up the sidewalk, while holding my hand. She giggled and enjoyed just walking about. After walking about 4 meters (13 feet) on a very slight uphill incline, she suddenly became very out of breath. I immediately noticed the change in her breathing pattern and it took me off guard. Before I had even a moment to process it, Tehilla let go of my hand, made her way over to one of the storefront windows, leaned on it for support and sat down. Then it hit me. Wow, this was all the energy that she could spend.

What amazed me even more, was watching her know her own limits and knowing when to sit down. It was sad to see her struggle to do something like that, but in other ways I felt a sigh of relief knowing that in this small way, she knows how to care for herself.

Tomorrow, she has her follow-up physical therapy appointment. I will definitely bring up with them what I saw today and see if there are ways they can help her.

Tummy Aches and Crankiness

Today, all 3 kids ranged on a level of sickness, with Tzviel having it the worst. Tzviel is a very amusing kid and this morning, in a very happy tone, he said, "Wow.  I have a headache." Then he started mumbling in what sounded like Spanish (he does not speak Spanish) and walking around. In a very non-chalant way he asked, "Hey! Can we take my temperature? " To amuse him, I agreed and took his temperature,  only to be completely shocked that he did in fact have a fever.

Tehilla has not been herself lately.  She has a bad tummy, and has been very cranky. Something is up with her and I can't quite put my finger on it.

We are heading to the doctor first thing in the morning. 

Normalcy

I can't believe it's been so long since my last blog post.

When I was pregnant with Tehilla, and was learning and researching HLHS, I was frequently told how difficult and anxiety filled interstage life would be. I was always reminded that life after the Glenn surgery would be calmer, easier, healthier and a lot closer to normal. 

Usually interstage is only 4-6 months. It's difficult and trying but you power through. Tehilla's interstage was 14 months long. It was an extremely long time to live in such an unsettling manner and with such high stakes.

We are now 3 months post-Glenn.  Life is drastically different.  Tehilla's health is great and she is just a chubby ball of giggles and curiosity.  We are incredibly blessed to have such normal days with our little miracle. Tehilla is doing so well these days, you probably won't believe me when I tell you, that most days I have completely forgotten how much her life hung in the balance. Some days, the only thing that reminds me that she has any history of problematic health, is the alarm to give her medications twice a day.

Today, I took a step back and was in complete awe of G-d and how completely routine and normal our days have been. I know we still have bumps ahead in our future, but right now is such a beautiful time for us. 

Tehilla is walking all over the place. She started dancing to music. I'll try to get a video of that. She is trying to say new words and is eager to be taught new things. She is mischievous and silly. And always smiling.  Well, except when she doesn't get her way. Then she shrieks,  but quickly goes back to smiling.

Thank You, G-d. You have brought us normalcy and it feels like the greatest gift of all.

In the picture, Tehilla is showing you where her tummy is.

There She Goes

The past few days,  Tehilla has been walking more and more. Now she is walking all over the place and almost entirely walks everywhere.  

1. Tehilla has not been sleeping well for the past while.  We are trying to adjust her nap schedule to see if it helps, but our entire family is suffering from sleep deprivation because of Tehilla.   Let's hope that tonight goes well. 

Snoring Monkey

I just wanted to quickly share a new funny little Tehilla monkey-ism. 

Tehilla has a love-smack relationship with Tzviel.  They are either playing a silly game that only they understand the rules to, or Tzviel will start to bug Tehilla and she wastes no time in giving him a good smack. Twice she's actually bit him, to everyone's disbelief. She got in trouble for that.

Anyways, one of their games is Tzviel running into a room and putting his head down on a cushion or blanket and starts to fake snore and pretend to sleep. Tehilla finds him and pounces on him and then they dissolve into laughter. It's pretty darn cute.

Tehilla has now picked up how to fake snore and walks around all day saying, "Chhhhh....Ssssshhhhhhh". It's really funny and today when we went to see the nurse that's what she was doing when we walked in. The nurse looked at her and said, "What is she doing? Is she snoring?" The nurse had a good laugh.

MMRV Celebration!

She finally got her MMRV shot! I'm so happy, I feel like throwing a party.  It's such a relief that we finally were able to get them.

Today, she is still weighing 9.700 kg but height-wise she is complete off the chart. She is way too short. Hopefully she will have a growth spurt. This is common amongst HLHS kids and is often discussed in my heart mamas group. 

Cognitively, Tehilla is off the charts in a good way. She put on quite a show for the  nurse.  The nurse was so impressed with how advanced Tehilla was. Tehilla talked and played and built block towers. She even walked around a bit. 

We go back in 3 weeks to get her DTap and Hepatitis and Prevanol shots.  She is almost all caught up!

Here's a picture of her playing ball and amusing the waiting room.  

Happy Purim!

This Purim has proved to be a wonderfully happy holiday! We are about to start our seudah (meal) with friends. But I wanted to post our Purim pictures and videos up. I hope your holiday was as joyful, as ours was!

Happy Purim!

 

 

Stroller Walking

Between work, Purim preparations, appointments and Tehilla not sleeping for reasons unknown, I have not updated the blog recently. But we are all fine and well and revved up for Purim! Last year, Purim was an emotionally difficult time, as it was right before Tehilla's second surgery, her BT shunt. We could not get together with friends and our minds were preoccupied for obvious reasons.

This year, it feels like a breathe of fresh air. Post-Glenn Tehilla is doing well and her days are spent like a normal rambunctious toddler. It's incredible to see the difference. We are going into this holiday completely elated. Having a daughter like Tehilla, really makes every day so vivid.

So, here's a video of Tehilla, the scaredy cat. She is walking, just fooling herself that she is being assisted. The stroller provides no support whatsoever, so she really is walking. She also uses tablecloths to steady her balance, as well as, my pinky. You can see her take a few steps somewhere in the middle.

Also, oznei haman or hamentashen (triangular shaped Purim cookies) are delicious.