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!

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.

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!

Nothing New

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

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. 

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. 

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: