Friday, February 28, 2014

Bananas and Fun

Well, we finally got Tehilla eating food. I gave her bananas a few days ago and she absolutely loves it. In fact she attacks the spoon and licks her lips. I'll be trying applesauce tomorrow and then try to mix some fruit with vegetables. 

She has been very mobile for a baby not crawling. Here's a picture of how she turned 90 degrees to the right and then skootched right off her playmat. 

And one more cute picture after her bath. She's cold so she's quite blue.

Shabbat Shalom!

Tuesday, February 25, 2014

...and her size

I forgot to post that she is now 6.010kg, 59 cm tall and her head circumference is 39.5cm.  So, she is growing nicely.

She is rolling on her side and can wiggle herself all around and off of her playmat.  She is reaching for everything and laughs and smiles constantly.  And she babbles all the time.  She still hates baby cereal and has hated sweet potatoes, zuchinni and carrots. She just does not like food yet. I'm going to try some fruits and see if I get anywhere with her.

Our doctor wants her to go for a blood test to check her iron level to see if it's even necessary for her to get iron drops.  If she doesn't need any additional iron, then problem solved and we won't have to worry about the iron drops.

The right move

Today, I took Tehilla to see our family doctor.  It was my Heart Mamas group that had encouraged us to take her to our family doctor and I really thank G-d, that He sent us the right advice at the right time.  I even am so appreciative for our horrible problem with the pediatrician, because it gave me the push I needed to find a better doctor.  Things hadn't been great with the pediatrician, but I was inclined to not make any switches just now.

But now Tehilla is in the care of a doctor:
who sympathetically listened to our story about the pediatrician,
who laughingly agreed that our nicknaming the pediatrician "Dr. Stupid Face", was appropriate,
who dutifully accepted the 60+ pages of photocopied medical papers to study,
who accepted many hours of research he will have to do to care for Tehilla,
who thoroughly examined Tehilla without forgetting that she is not just a heart baby, but also a baby,
who reveled in Tehilla's development and achievement of milestones,

 and who thanked G-d that she is doing as well as she is.

I could not be happier with this move.

Our cardiologist appointment has been reset for next week.

Sunday, February 23, 2014

A Date!!!

I just got a call from Dr. Erez's secretary and they gave us a date for her Glenn surgery. We go into the hospital on Monday, March 24 at 9:00am and the surgery is Tuesday, March 25. 

So, now we are going into organization and preparation mode. Tehilla will be a week shy of her 6 month b-day.


Thursday, February 20, 2014

Change is Good

Yesterday, on our way out of the hospital, we bumped into Dr. Erez.  He was thrilled to see us and see Tehilla.  We chatted with him for a bit.  I love that our world-class surgeon took the time out of his extremely busy day to talk to us.  I updated him that Tehilla has really been doing well.  She is having less issues overall. He was happy to hear that.  He said that as long as things stayed well and stable with her, the Glenn would be in a month and a half, maybe even two months.  But it would really be based on how she is doing.  That puts her at 6-6 1/2 months old. He also commented that it was a better time to do it.  It will be spring and there are less chances of her getting sick with anything that would impede her recovery. 

Later that evening, we went to see our pediatrician.  There was an incident and serious case of unprofessional-ism on his part.  We will be switching doctors.  This really is not what we needed with all of the stress of interstage, and a worrisome night in the ER.  We will be switching Tehilla to our incredible family doctor that the rest of us see.  It's the right move for Tehilla, because we have an incredible relationship with him and feel that he is the right person to help us on our journey.

Wednesday, February 19, 2014

Allergic Reaction

Immediately after I posted the last post, Tehilla's face turned red again and she had several spots on her face. 

The doctor came and was sure it was an allergic reaction. And then it hit me, the only thing that changed was that I gave Tehilla iron vitamin drops for the first time yesterday morning!

So, she's allergic to that brand of drops. Yay for no stroke! Seriously Tehilla, way to scare the bejeezus out of everyone!

Pulse ox lullabies

Tehilla seems fine. They are waiting for the senior doctor to come in and look her over. I'm trying to get ahold of our cardiac nurse, so our cardiologist can take a look at her.

Tehilla has found a new hobby. Breaking out of her swaddle blanket and pulling on her pulse ox just enough so it does not read correctly and shows her heart rate through the roof. This sounds all of the alarms. She did this a few times last night. The nurse would come running and ask me what is going on. I would manage to lift my head off my pillow and say, "It's not connected. Look at her oxygen level, which would be in the 90s. She isn't capable of those numbers." So they would fix her pulse ox and I'd force her back into her swaddle blanket. 

It's been a fun night. 

Tuesday, February 18, 2014

Observation in the ER

Yesterday and today, Tehilla was not sleeping and wanting to eat every two hours. She has been needy and wanting to be held. 

This evening, Tehilla's face suddenly swelled and the right side turned red. I tried to call our cardiac nurse but didn't get through. We called our friend, a PICU nurse, who told us to go immediately to the ER and she called ahead and let them know what was going on. 

By the time we got here the redness was down and the swelling had gone down somewhat too. Her oxygen was at 73. 

There is a strike going on at Hadassah, so the ER is quite empty. We basically have two nurses and 5 doctors to ourselves. And we have all of our favorite ones! I think only one nurse didn't know who we are, but everyone jumped in, "This is Tehilla. She has Hypoplastic Left Heart Syndrome..."

They all checked her thoroughly and really felt that she seemed completely fine. The worry is that she is going to have a stroke. The cardiologist on call was called and he said to keep us overnight for observation. 

Of course Tehilka was incredibly playful with all of them and started laughing when they examined her. Her diagnosis so far has been that she's adorable. 

So, she is settling down to sleep now. At least,I brought a toothbrush and contact case this time...

Wednesday, February 12, 2014

RSV #4

Today, Tehilla had her fourth RSV shot. We weighed her and she is at 5.490 kg! She is gaining weight nicely, thank G-d.  She's been needy and tired, as she usually is after this shot.

She was supposed to have an appointment today with our cardiologist, as well as an echo cardiogram. Our hospital, Hadassah Ein Kerem, currently has a strike due to a severe financial downfall caused by many different factors.  I hope for everyone involved the situation gets resolved quickly, staff gets paid, and appointments get back on track. Hopefully her appointment will be rescheduled soon. 

The past week, Tehilla has been doing better, and handling pretty well.  She is still not the biggest fan of her baby cereal. I, also, started her on sweet potatoes and will try her on some other vegetables this week. Tehilla is incredibly talkative.  She has whole conversations in baby babble with our family and has even addressed Ron in an exact imitation of the way he talks to her (with high pitched tones). I have tried with all my might to capture it on video, but Tehilla is completely camera shy. That and then she tries to eat the phone. She has started to roll to her side and when left on her play mat, she wriggles and moves, until she is facing in the opposite direction. Thank G-d, she has been making her milestones nicely.

Monday, February 10, 2014

Finally Sleeping

After 5 days of not sleeping during the day or night, I called our cardiac nurse. She assured me that it wasn't heart related, but strange nonetheless. She was calling Dr. Erez anyways, so she offered to ask his advice, since he is a father of four! She then told me how her own daughter had a cough and she had tried the onions and it seemed to work. We have started a trend.

On Shabbat, I finally managed to get her to nap in her stroller, so I figured it was worth a try at night time. Ridiculous heart warrior-princess! She slept for 4 1/2 hours, woke up to nurse, then slept another 3 hours. So, guess who is sleeping only in her stroller... As long as we are all getting sleep, I couldn't care less. 

Wear Red to Support CHD Awareness

This month is CHD Awareness month.  On Friday, in the U.S.A, it was National Wear Red Day to support CHD and Women's Heart Disease. We missed the involvement in that day. So on Saturday Night, on Facebook, I asked our family and friends to wear red on Sunday, to show support for Tehilla and other heart warrior kids, like her. There was a nice response from some of you.  To those that didn't participate, don't worry, we will find another way for you to promote CHD Awareness...

Thank you to those of you that sent us pictures.  It was touching to see.  Here is a collage of everyone.

Friday, February 7, 2014

All Clear

For the past 4 days, Tehilla has woken up throughout the night and has not taken her naps during the day. I am "pour hot sauce instead of water in your cup" tired. We have been intensely warned about any unusual behavior and getting everything checked out.

So, I took Tehilla to see her pediatrician. He looked her over and everything looked fine. Then she gave him a big gummy smile. We got a clean bill of health. He did ask that we start Tehilla on vegetables already and iron. 

Shabbat Shalom and a restful weekend to everyone!

Thursday, February 6, 2014

The Waiting Game

Today, our cardiac nurse, Ifat called to update me. They will not book a date for the surgery until Tehilla has had another echo.  Based on the findings of the echo, they will wait a month, maybe even two months to do the surgery.

Tehilla is going for an appointment with our cardiologist and an echo next week. So, hopefully we will have a more concrete answer after that.

Wednesday, February 5, 2014

Nothing New But Cuteness

Thank G-d, nothing to report but a cute picture. 

Oh, and she loves Sesame Street. 

Monday, February 3, 2014

Starting Solids

Tehilla is four months old. The cardiologist encouraged us to start her on food. So, today we gave her cereal. I'm happy to be able to say that it went like it goes with most babies. She enjoyed the first few spoons and spat the rest. 

Sunday, February 2, 2014

CHD Awareness Month

February is Congenital Heart Defect (CHD) Awareness month. Please help spread awareness and hopefully save lives.