Tuesday, December 31, 2013

Skipping Percentiles

Tehilla was weighed and measured today. She is up to 4.360 kg and 54 cm. She jumped up a percentile as well! She is now between the 5th and 10th percentile. 

Sunday, December 29, 2013

Clean Bill

We went to see the pediatrician today. Thank G-d, she is symptom free and the doctor gave her a clean bill of health. He actually couldn't stop smiling about her overcoming this virus "normally" and without hospitalization. Of course, Tehilla also gave him some pretty darn cute smiles. 

Saturday, December 28, 2013

Our little Sicky

Shabbat was spent with fever, a lot of vomiting and diahrrea. I nursed Tehilla on demand. She was extremely tired and slept a lot. I had to wake her to eat several times. She had many wet diapers, so we knew she wasn't dehydrated. When she was awake, she was quite cranky. Very few smiles from our little trooper. Her fever finally broke this afternoon. Her O2 saturation has been between 80-85. 

I called our cardiac nurse to check in. She felt that Tehilla didn't need to be seen by the cardiologist, but would update him to let him know. We have an appointment with her pediatrician for tomorrow. 

Our little heart warrior princess is fighting strong. Thank you to everyone for the thoughts and prayers. 

Friday, December 27, 2013

No ER- for now

Our pulmonoligist looked her over and said not to go to the ER, that she looks fine. We just need to make sure she stays hydrated because dehydration is extremely dangerous for her. 

Of course if anything takes a turn for the worst, we go to the ER. 


Tehilla threw up several times through the night. Now she has a fever of 38.2 and threw up again. Her saturation is good: 85. 

We are going to my son's pulmonoligist who lives in the neighborhood in 40 minutes to have her checked out. He'll decide if we should go to the ER for blood tests. 

Here's to hoping that this is just a little virus that passes quickly and we don't spend Shabbat in the ER. 

Wednesday, December 25, 2013

Happy 3 Months- in the ER

Yesterday, Tehilla turned 3 months old. In honor of the occasion, she had an interstage cyanosis episode, in other words: she turned blue. Yesterday, around 7:30pm, I was working on the computer, while Tehilla was swinging happily in her swing. Mechal, my 7 year old says, "Hey, look Ima! Tehilla's lips are purple."

She had been sleepy the entire day, but I hadn't made much of it. I took her oxygen saturation level and she was at 68 and her temperature was at 37.6. Calls to the cardiac nurse, to the doctors and surgeons...it turns out no one was in the hospital, and they didn't want me just hanging out in the ER, and having the problems that we've had in the past.  They told me to wait at home, until they can find someone on call or to go in, to take a look at her.  In the mean time, I should feed her and wait a half an hour, then take her saturation and temperature again and of course, look and see if her color is still off.

45 minutes later, her lips were still purple, her saturation was at 66, but her temperature was at 37.2. They wanted us to come in to the ER and they found one of the pediatric cardiovascular surgeons that was in the hospital to come and check on her.

I have to say this, for all the complaining I have done on previous visits to the ER- we had none of those problems.  The doctors and nurses were on top of everything, handled everything efficiently and were cautious and caring. 

Tehilla's face was very purple/blue when we got to the ER.  They checked her and her color in her face returned very quickly, but her lips were still purple.  Her saturation was back to normal at 82 and her temperature was at 37.3. They also weighed her and she went up again: 4.400 kg!

They called a cardiologist immediately, who requested standard blood tests, as well as the blood gases test.  He also wanted an EKG done and wanted us kept overnight for observation of her saturation. The surgeon came and looked her over and agreed with the cardiologist about observation for the night. At this point it was already 11 o'clock at night, and she was cranky from being off schedule.  This concerned them, and they could not get the EKG to read correctly.  After they kicked everyone out and let me have time to calm her down and feed her, they were able to do the EKG again. They put us in a proper room, all the way at the back of the ER, to keep us away from other patients. We went to sleep- well, Tehilla did. I don't know how much sleep I got. Her saturation remained normal throughout the night, but her lips remained purple and her color was off.

In the morning, her O2 saturation was between 69-73 and she was checked again by the pediatrician and I was told that her EKG results were good and her blood tests came back very good. They were waiting for a cardiologist to come and check on her again.

Her saturation started to return to normal and occasionally go too high- all the way to 91. They came to do an EKG again. It was time to give her the Losec (Prevacid) that she takes for reflux, but the ER didn't have any.  While I was discussing with the nurse what to do, Tehilla threw up all over me.

We waited several hours for our cardiologist, Dr. Golander to check on her. When he finally came to check on us, he said, "Wow, you look horrible.  What's wrong with your face?"  Don't worry, I still love him.  In fact, I had been in the same clothes, and my contacts for 36 hours, now with the embellishment of throw up.  I was in a good place mentally, that's for sure.

I explained to him about what had gone on.  The big question now, was whether to move up her Glenn surgery. These interstage episodes are "normal" for HLHS interstage, but that doesn't make them any less dangerous. Each one of them has to be checked out.  As Dr. Golander put it, "Better to have a sleepless night in the ER, than to lose your child." While talking with him, Tehilla started crying and her face was blue.  Because her saturation was fluctuating so much between being too low to too high, it is an indication that she is not ready for the Glenn surgery, and it would not be successful. Dr. Golander decided to move her heart catheter up.  We have it scheduled for January 26th.  We go in the day before for blood tests, stay the night and do the heart catheter the next day, and then spend the night.  So 3 days in the hospital. The heart catheter will measure the pressure of blood flow in her heart and give them an indication of how ready she is for the Glenn.

He also took the time to explain to me that pulse oximeters can not be depended on for reading very low (low 70s and 60s) oxygen saturation.  That they are build for the normal human and Tehilla is abnormal. He was full of compliments today.

Dr. Golander acted very wounded that Tehilla is no longer happy when he picks her up. I told him, "Dr. Golander, she has discovered a world of swings, toys and a warm home.  You've got to up your game."

I also discussed with him her reflux.  Tehilla had already been on Zantac and now on the Losec, without any real relief.  She still usually throws up once a day and gags constantly.  He is starting her on Gaviscon, as well as her Losec.

So 15 1/2 hours, 3 EKGs and a blood test later, we were finally released. Thank G-d, she is okay and we (yes, me too) have been napping all day. 

Happy 3 months to us! (This kid has got to learn how to throw a proper party.)

Wednesday, December 18, 2013

RSV Shot- Take 2

Today, Tehilla went for her second RSV shot. Once again it has made her sleepy, even though that's not a regular side effect. 

She was weighed and went up again: 4.060 kg. 

Friday, December 13, 2013


We are in middle of a snowstorm in Israel. The country isn't equipped for snow, as we only get one a year, at best. It is -1 degrees Celsius outside and is supposed to keep snowing through Shabbat. Many areas have lost electricity. We have had our electricity flicker a few times. 

For a baby like Tehilla, whose heart functionality is limited, this poses a problem. If we lose heat, her heart will have a difficult time circulating blood and maintaining warmth. 

We have bought a lot of 48 hour candles and plan on using them in ceramic pans to heat a room. As well, we will keep our gas stove on with baking sheets over and pots of water. Need be, I will keep her on my body wrapped in sweatshirts and blankets. If that doesn't do the trick, we will have to leave the neighborhood and hang out at the hospital.  G-d willing, all of it will be unnecessary and everyone will get their electricity back on. 

Thursday, December 12, 2013

Clown Pictures

We just got the pictures from Lev Leytzan.  Thank you to all the clowns that brought so much happiness and clown noses into our home and to Neal for orchestrating the whole thing!

Wednesday, December 11, 2013

Onward and Onward

Today, we had an echo cardiogram and an appointment with Dr. Golander. When he saw her, her saturation was at 73 and he said she was a little bluish.  Ready for this? The reason is because her heart is working well.  Basically, she was put back on the Fusid, when her O2 levels were going too high. The Fusid causes more urine output which indirectly causes better circulation and was supposed to lower her O2 levels to 75-85, which is good for her.  Now that, apparently, her heart is functioning better, the Fusid is causing it to dip even lower.  So, off of the Fusid.

Last checkup, Dr. Erez had said that the plan was to have the Glenn surgery January/February time.  Now that her heart is functioning well, Dr. Golander has made a different plan. He wants us to come back for another echo in a month and a month after that to do a heart catheter. Shortly after that, she will have the Glenn surgery. He explained that now that things are going smoother, we don't NEED to do the surgery as early as possible, but rather we can do it when it is the best situation for her.  He believes that it will have a better success rate if we wait. He wants her to be 5 kg for the surgery. We are now at 3.810 kg, so it's not a far way off.

Of course, we are happy with the outcome.  A little part of me is disappointed that we won't be moving to the next surgery sooner.  I thought that next month we would be done with interstage, and all its chaos and stress.  I know that this is the best thing for her and obviously we want the best possible scenario.

So, for the next two months, we need more fat thoughts and prayers.  And of course, prayers for continued health and stability.

Monday, December 9, 2013

Percentile Hopping

Tehilla went up in weight another 200 grams! She is now 3.810kg. She also grew in height: 52cm. She jumped up on the percentile graph. Before she was less than 3%. Now she is between 3-5%. 

She also got the pneumococcal vaccine. 

Thanks, Aunty Sarah, for my Roots sweatpants!

Sunday, December 8, 2013

Nothing New

Nothing new to report. Thank G-d. We have just been hanging out and baby babbling and smiling more. 

Wednesday, December 4, 2013

Face of Reactions

This is the face of a baby who can't stop smiling and even let out a laugh, while feverish from her vaccinations.

How's that for "quality of life", Dr. Big Nose!

Today, we went to see her pediatrician about switching her from Zantac to Lansac (known as Prevacid in the US) for her reflux. She has been on Zantac for 8 days with absolutely no change. 

Monday, December 2, 2013

Immunization Catch-Up

Today, we had another well-baby appointment. Tehilla went up another 200 grams, putting her at 3.610 kg. She also grew taller, and is 51cm long. 

We have been given the okay to begin her vaccinations and are fast tracking them. It is extremely important to now get her on track for her immunization, as it would be for any baby, but more so for a baby with HLHS. 

So, today, she got the first HBV shot, that usually is given in the hospitals, two days after birth. She also got the first DTaP + IPV + HIB, normally given at two months old. She also got the first Rota virus drops. 

Now, we just need to watch for any reactions and be in touch with our cardio nurse about anything. 

Sunday, December 1, 2013

Invasion of the Clowns

Tonight, my family had the most fun that we've had in a long time. Interstage has been quite lonely. I wrote about all the precautions we have to take to limit Tehilla's exposure to germs. This means that no one other than family comes into our home. We are limited on what we can do, even with our other kids. This Chanukah vacation, we are pretty stuck at home. But tonight, my kids had an extraordinary amount of fun. 

About a week and a half ago, I received one of the quirkiest emails. It was from a guy who runs an organization of medical clowns, Lev Leytzan. He reads this blog and wanted to know if the clowns could pay our family a visit. Every year the volunteer clowns fly to Israel and visit hospitals and homes, to bring joy to sick children and their families. They team up with the Ossie Schonfeld Memorial Toy Fund, and deliver toys to the sick children and theirs siblings. 

Well, tonight there was a knock on the door. We opened it to find a clown. Then clowns just kept piling in. And then volunteers from the toy drive. I think our home was filled with about 30 people. The clowns played with all three of the kids. Laughter and shrieking could be heard, while foam clown noses were flying about for the next 40 minutes. They gave all 3 kids a present and then just as quickly as they came, they left.

We all sat down and looked at each other and just laughed. Thank you, Neal, and your incredible group of clowns! We really appreciated it!

When I get better pictures of the evening, I will upload them. For now: