Thursday, June 26, 2014

Much Better


Tehilla is feeling much better. She recovered very quickly from her ear infection, this time around, and I believe it's because we found it faster and treated it right away.

Tehilla's little personality is really starting to show. She is such a happy, playful baby. She is just starting the stage of throwing things on the floor and watching the cause and effect result.  Today, she threw her tea biscuits from her high chair and watched them crack into pieces. Then she clapped and yelled, "Yay!"

Tuesday, June 24, 2014

Ears Again

The past three days, Tehilla hasn't felt well. I assumed it was her (non-existent) teeth again. Yesterday, she started getting a cold. But today, she developed a fever. She hasn't been eating today and has been very sleepy. When not in and out of sleep, she has been screaming.  She started pulling on her hair and ear.

We went to see the doctor. Our regular doctor is away, so they brought in a replacement doctor. He happens to have been our family doctor from awhile ago. Someone we absolutely adored and were really saddened when he retired. We'll refer to him as Dr. Wonderful.

Well, as soon as Dr. Wonderful scanned Tehilla's card and saw HLHS listed, he sat up and asked all the right questions. He remarked incredulously, "And look at that, none of this has set her development back. She is incredible. Baruch Hashem (Blessed is G-d)." He wanted to hear about the diagnosis and pregnancy.  When I explained to him the journey thus far and told him that we made a choice to give her a chance at life, he brought tears to my eyes when he said, "You made the right choice. Just look at her. You did right by her. Thank G-d."

He then checked her and she has an ear infection. She is absolutely miserable. Along with antibiotics, she is getting a lot of TLC and Elmo.

For Dr. Wonderful this must have been a remarkable experience.  When he first became a doctor, there were no surgeries for HLHS.  And now, to see Tehilla "growing and thriving"...it made him emotional. 

Saturday, June 21, 2014

Nothing New

I meant to post before Shabbat, but couldn't find the time. Thank G-d, we are all doing well and there is nothing new to report. We have had several nights of Tehilla sleeping through the night. 





Monday, June 16, 2014

All the Right Changes

Tehilla has been doing much better. In fact, she has been doing extremely well. We made some very big changes with her the past week and we have seen a huge difference.  We moved up her bedtime and started her on a very exact nap schedule during the day. We also started letting her cry it out (not for too long). I now refuse to nurse her throughout the night.

As well, we started giving her a lot of new foods: rice cakes, egg yolk, yoghurt, cottage cheese, cheese. When we gave her pizza, she wolfed it down.

Overall, she is pudging up, is happier, calmer and things have returned to a nice normal. We are all getting more sleep.


As well, we have made changes in our home. Tehilla is still in interstage, which means the circulation in her heart can very much compromise her overall health and any kind of infection can be severely dangerous. It means she often turns a bit blue from low oxygen saturation. Lately, bli ayin harah (without an evil eye), she has been doing well and we have not had to run to the ER for any emergencies. Usually HLHS babies are only in interstage for 4-6 months. Once they have the Glenn surgery, they are in a much better position to ward of sickness and have a more normal babyhood, until they require the Fontan surgery, later on.

Tehilla is now 8.5 months old and we don't know when she will get her Glenn surgery because her pulmonary arteries are too small. Her next cardiology appointment is in two weeks and I pray that we see something significant and can progress. But in the mean time, as one of our doctors said, "we are in a holding pattern."

Until now, we have not let anyone into our home unless they were family or a healthy adult friend, or a herd of 30-something clowns that was totally unexpected. We do not take Tehilla to any crowded places and avoid public indoor places.

We made a decision to start having people over in our home, one family at a time, and as long as they are completely healthy. It's summer time now, and there are fewer viruses and illnesses.  Because we slowly started letting people (except for the clowns) into our home and now are having kids, as well, we are slowly building up Tehilla's immune system and her antibodies.

This change has been incredible for our entire family. We are finally able to spend time with friends. It has been extremely therapeutic for Mechal and Tzviel, as well. We are all benefiting and loving it.



Thursday, June 12, 2014

Thankful Thoughts

For whatever reason, today, I was filled with emotional memories. I kept thinking back to where we were this time last year. I can honestly say that this time last year was the worst time of my life. I was 20-something weeks pregnant and waiting. We had finally seen Professor Rein, and he had answered our questions.  We had been told Tehilla had a 45% chance from birth to making it over the age of 5. I had been sent to have an extensive amniocentesis done and was waiting for the results of those tests to come back. Professor Rein had seen in the heart echo that the PFO in Tehilla's heart was completely closed. It was completely inoperable and it sealed her fate. We would have no choice but to terminate the pregnancy.

We were waiting. Waiting for a complete miracle. Once we knew that the amniocentesis came back okay, we made a decision. If G-d would grant us this miracle, we would go through with the pregnancy.

And then, I get to look at this little face every day...



...and praise G-d for our open miracle. And for the miracle of her life every day. Thank you, G-d, for Tehilla. For her teething problems and her ear problems. Just thank You.

Wednesday, June 11, 2014

Little Lev Update

Our first set of printed material is done! Business cards and posters will be making their way to cardiologists and hospitals throughout Israel, hopefully, starting next week!



If you would like to check out the website and find ways to get involved, please go to www.littlelev.org


Tuesday, June 10, 2014

Not That Word

We've had four completely sleepless nights. Tehilla has cried or screamed unless she was nursing for the entire night.

Entire. Night.

Last night, she started pulling on her ear. So, today, Tehilla piggybacked on her sister's doctor appointment.

Our doctor looked at her ears and checked her out. He then looked at me. I just turned to him and said, "Don't say it. Don't say that word. I can't hear it again."

So, he responded, "Okay, well her ears are fine."


Thursday, June 5, 2014

Yay!

Firstly, on Shabbat, Ron heard Tehilla say "Hi!", finally.

Now, she claps her hands and says "yaaaaay". It's not completely clear on this video, but at least I caught some of it on camera. Okay, it really doesn't sound like her saying "yay". But the odds of catching it on camera- smaller than you think!


video

Feeling Better

Today is the 10th and last day of Tehilla's medication, and she is finally feeling better. She isn't screaming or pulling on her ears and I haven't had to give her ear drops, today. She even slept 6.5 hours last night!

What I've been noticing is that it just takes her body longer to get better from sicknesses.

Tuesday, June 3, 2014

Happy Shavuot!

There is a big improvement in Tehilla's pain today. She hasn't been pulling on her ears as much and she let me put her down to play for several hours. Thank G-d, it looks like she is finally recovering from this ear infection.

Happy Shavuot from our family to yours! (Tzviel was too busy making a puppet show for pictures.)



Monday, June 2, 2014

Not-So-Special Specialist

I put in a call to our doctor today, because after 7 days on the medication, Tehilla is still pulling her ears and clawing at her head. The Otidin helps her. In fact, it's the only thing that helps her, and as soon as it wears off, she starts crying and pulling her ears again.

Our doctor sent us to an ENT to take a look at what is going on. Luckily, we were able to get an emergency appointment. The ENT took a look at her ears and throat and said there is no infection. When I asked him why she was in such misery, he just shrugged and said, "Maybe her ears hurt."  Oh, thank you for clearing that up.

On the plus side, the Otidin drops are giving her relief and allowing her to nap and sleep for several hours at night. At least the infection itself, is definitely gone and with the added rest, her body will hopefully bounce itself back.

Sunday, June 1, 2014

Little Lev in Hebrew!

We have launched the Hebrew website for Little Lev! www.littlelev.org




As well, the first set of care packages have been sent out for heart babies and kids in the NICU and PICU.


Again, thank you to all of the volunteers that have helped make our dreams a reality!

The Gift of Sleep

Before bed, I gave Tehilla all of her usual medications, her antibiotic, Tylenol, and I added ear drops, called Otidin. Otidin are local anesthetic drops. The on-call doctor had said, that if they help, than it is her ears that are hurting her.

Well, Tehilla slept from 11:00pm, until 4:30am. I nursed her and when she was finished, she smacked her lips together and gave me the sleepiest smile. Her smile said it all, "I'm so sorry for the trouble I've caused. I hope you liked the sleep I gave you." Now, I am quite aware that this is contrary to an 8 month old baby's psychological capabilities. But that is definitely what that smile said.


So, I do think it is her ears. I'm not entirely sure what is going on with her. If she is still not better by tomorrow, then we will go see our doctor again.