Sleepless Shabbat

Tehilla developed a fever 40 min before Shabbat. I called the doctor on call and explained the situation. He told me to call him if it got worse. Tehilla spent the entire Shabbat shrieking, not sleeping, pulling on her ears, clawing at her head, not eating a lot, begging to nurse constantly. 

So as soon as Shabbat was out we called and went to see the on call doctor. He looked her over and said that he's suprised to say that her ears are clear. Either it's another virus or its teething. To which I went on a whole vent about teething...

Ron and I are both very run down, from lack of sleep and are not feeling great, so maybe it is viral...

At least it does not seem heart related. Thank G-d.

I'm open to any heart safe suggestion to cure teething and lack of sleep.

Ear Infection

Tehilla woke up this morning with a fever. A trip to the doctor and we finally found that ear infection that has been driving us all crazy. Not that I'm happy that she has an ear infection. I'm just happy that she has something that we can fix.

Less Tears

Tehilla's tummy finally seems to be on the mend. Chamsah Chamsah Chamsah. Ptu ptu ptu. Bli Ayin Harah. (If you didn't follow that, don't worry about it. Just warding off the evil eye, is all.)  It seems the night (I honestly have lost track of time, due to the lack of sleep.) that Tehilla cried and was finally comforted by a bottle, was due to a growth spurt. She has chunked up and grew.  Next week, I plan on taking her to the well-baby clinic for measurements and immunizations.

Her teething is still- well, like this:

 

She really is in so much pain. We have been giving her Tylenol more generously and make sure to give her some before bed.  It has helped everyone get more sleep. I actually got 5 consecutive hours of sleep, last night.  During the day, she has been napping better and been more playful. 

We are having a lot more moments, like this:

Tehilla can mostly sit up on her own. We keep a cushion around her, just in case. She also can roll and turn herself very well. Within a minute, she has managed to get herself across the carpet and grab that "special thing" that her siblings don't want her to have.

I Hate Teeth

Tehilla has been miserable for days. She hasn't napped and wanted to be held non-stop. At night she has spent hours crying or repeatedly waking up. Last night, was extremely hard. She woke up at 12:something and screamed, shrieked, took a deep breath and screamed some more until 5:oh-my-lord. It was awful. As soon as Shabbat was over, I called our doctor and because of her heart, he wanted to check her tonight.

Dear Tehilla,

My dear, sweet love, I hate your teeth. They hurt you tremendously.  That I'm sure. You have a very high pain threshold. So for you to scream for hours, I am convinced that it is unbareably awful. When your pearly whites decide to show their faces, let me make this clear. You are never to get a cavity. Don't even consider braces. Together, we have put in hours of pain, tears and screams. You are to have record breaking perfect teeth.

G'night all. Here's to a pain-free night.

Tummies and Prayers

Last night was better. Tehilla slept until 1:30 am and woke up to nurse. I didn't turn her down because she is not feeling well. After nursing she went back to sleep until the morning. She did not let me put her down today and hasn't taken a single nap. So now we are both cranky messes.

Tehilla did learn a new "trick" today. She can now hold her sippy cup by herself.

On Monday, our doctors made it clear to me that Tehilla cannot progress to her next surgery unless she has substantial growth in her pulmonary arteries. As of now, she has had very little growth in the past two months since her BT shunt surgery.

I'd like to ask, if you are praying for Tehilla, please specifically pray for her pulmonary arteries to grow, so Tehilla can have her Glenn surgery. Tehilla bat Shoshana.

Tummy Troubles Ongoing

This is the face of a little lady who cried and screamed without a break between 1:15am and 4:50am. Her stomach is hurting her again.  Not that it ever completely stopped, but she was doing better.  So, back to prune juice and the powdered medicine hidden in her food.

Tehilla also said "hi" twice today. What's really cute, is that she says "hi" in the same enthusiastic tone that everyone says "hi" to her. "Hi!!!!"

Tummy and Heart Update

For the most part, Tehilla's tummy troubles are better. She isn't completely back to normal and still gets pain. During this time, she has refused a bottle. The past two nights, she was up through the night. Last night, some time around 3:15, I pushed her to take her bottle and she drank 60cc and then slept well the rest of the night. So now I'm convinced that she is hungry and just completely out of sorts. All I'm sure of is that I vaguely remember a concept called sleep and I would do anything for some.

We had our follow up appointment with Dr. Golander. Her echo showed that her heart functionality has improved. Her pulmonary arteries still have not grown hardly anything.  So...we are just hanging out and hoping that they do grow, so she can have her much needed Glenn surgery.

Little Lev!

I am beyond excited to share with you that our organization, Little Lev, has launched it's English website today! We are working hard to get the Hebrew version up in the coming weeks.

I want to personally thanks Wix.com and specifically Samantha at Wix, that heard about my dream of getting a website out there to help Israeli families with children with congenital heart defects.  They gifted us their complete services free of charge and gave us the support we needed to launch the website.  Thank you from the bottom of my heart.  With your help, we will now be able to help so many people.

Please come check out the website: www.littlelev.org

If you know of anyone living in Israel, with a child with a CHD, please pass the link along. As well, check out the page titled "Get Involved", to see how you can help make a difference for so many people.

A Little Here, A Little There

Tehilla woke up this morning with a cold and a fever. On a positive note, the medication and prune juice have started to work and she is calmer than she has been in days.  I gave her mushed up prunes as well, and she gave me a look, as if to say, "I have half a heart and a tummy ache, Ima. My tongue works just fine."

She was a little more playful because the pain in her stomach is less than it has been. She even played on her playmat for a bit.

 

But then Tehilla lost all interest and energy and was just not feeling well.

Let's hope she recovers well over Shabbat. Shabbat Shalom to all of you!

Tummy Troubles Ongoing

For the past few days, things have been tough for little Tehilla.  She will not take the oil and spits it out when we manage to force it in.

She has spent the last 3 days crying and whining nearly all day. She hasn't taken her naps and hasn't slept for a few nights.

Today, we went back to our doctor. He examined her and then she had an x-ray done. Her stomach problems are backed up higher up.

So now, she is on a stricter regiment. Prune juice, prunes and a powder medication that I can hide in her food. Let's hope this helps.

Tummy Trouble

My favorite words are "not heart related" and "stable". The words that make me smile are "like a normal baby."

For eight days, Tehilla has thrown up every time we have given her a bottle of formula. So I stopped giving her formula and started only nursing her and giving her solids for a few days. She has been extremely constipated and the past 36 hours didn't poop at all.

I know this was what y'all wanted to read about. Enjoy my poopy post.

We went to the doctor this morning. While some of this could be heart related, it's not! Just normal baby tummy trouble. Yes, in my head, I did a little dance.

She's being given some kind of oil to help her regulate.

And...since we have upped her dose of Enalapril, the excessive sweating has almost completely stopped!

Thank G-d!

If you are on Facebook, we are preparing to launch  our website in English. There is a Facebook page:

www.facebook.com/LittleLevIsrael

Please show your support and like us. it helps get our name out there, so other heart families can find us.

Happy Parties

Today, we had our second Mesibat Hodaya, party of thanks.

Thank you to those of you that were able to make it. We are truly blessed with incredible friends and family. 

At the party, I shared something that one of our blog readers had commented. Rabbi Liebtag in a shiur about Tehillim (Psalms), discusses two types of Tehillim.  One is the type where you are seeking help from G-d and asking for help. This is called "tefilla" (prayers). The other type is when you are praising G-d. This is called "tehilla" (praise).

We are so blessed to be in a time of Tehilla. Praise. Thank You, G-d, for two successful surgeries.  Thank You for giving us the opportunity to seek You out to Praise you. Let Tehilla continue to grow and develop, so that people will continue to praise You.

Shabbat Shalom to all of you!

Sweat that!

We just finished our appointment with Dr. Golander. Tehilla's heart functionality seems a bit better. He is raising her dose of Enalapril. 

He cannot explain Tehilla's excessive sweating, because her heart functionality is not poor enough to be the cause. He wants us to follow up with our regular doctor. 

Tehilla's pulmonary arteries have grown slightly. We still have time to go before Tehilla is "Glennable." 

We go back for another checkup in two weeks. 

Other than that, Tehilla is becoming more active. She is rolling all over and moving herself to the side. She has started to try to push herself forward. 

She also definitely said "hi". Of course, I was the only one to hear it. But it really did happen. Really! 

Still No Teeth

Our home has once again been plagued by Tehilla's teething. Thankfully, Tylenol gives her some relief, but there goes all my hard work on sleep training her. Even Mechal screamed out in middle of the night, "Just grow your teeth already! Please!"

Tehilla has been on the Enalapril for a week now, and we have not seen any improvement in her sweating. She still gets drenched with sweat when she eats, cries and sometimes when she sleeps. We have a follow-up appointment with our cardiologist, next week.

Meanwhile, I have been hard at work with two heart mother friends getting our organization started. I can't wait to share it with all of you, when it launches.