Heart Smiles

You can't help but smile, when you have this face looking at you.

While yesterday did not produce the results that we had been waiting and hoping for, it's smiles like these that remind us about the journey we started.This journey has had several downs but also extreme highs. Ron and I can honestly say that this year has been the most incredible year of our lives.

The truth is that we like to fool ourselves into believing that we have some kind of control over the situation. We educate ourselves, stay on top of the situation, advocate (a lot), and try to make a difference in the Israeli heart community. But at the end of the day, we are no more in control over this situation, then any other situation.

We have faith. We believe that G-d is in control. We feel very strong in our beliefs and we know that G-d has provided us with the perfect doctors and surgeons to take care of Tehilla. It's unnerving that we are going into surgery with an added risk. But we are also going into surgery with benefits.

Today, Tehilla is healthy and strong. She is not going into surgery in a critical state. She is doing well- exactly how they would like her to be. And in all other areas, she is shining.

So, that is where I will spend my energy: in smiling with Tehilla and holding strong to my beliefs.

Today's Appointment

Sigh.

Today, we had Tehilla's appointment with our cardiologist, Dr. Golander. She had an echo to check on the size of her pulmonary arteries. There has been no progress. They have not grown.

Tehilla did not have the "normal" Stage 2 surgery, the Glenn at 6 months because her pulmonary arteries were too small. Instead they replaced her Sano shunt from her Norwood surgery, with a BT shunt of 5 cm.  This was done, so that she would not outgrow her Sano shunt from her Norwood and crash. They also specifically put one of the biggest shunts to increase the pressure on her pulmonary arteries and force them to grow.

That last part has not happened. We have waited and pushed off the Glenn in the hopes that her pulmonary arteries would grow on their own. It has been 6 months since her BT shunt surgery and we can now respectively say that her pulmonary arteries are not growing. This pushes her to an "irregular" case of HLHS.

Because we have seen that her pulmonary arteries are not growing and have given a reasonable amount of time for it to happen, we can not expect that they will grow. So, there is no sense in waiting any longer. We are going ahead with the Glenn surgery with this added problem. Dr. Erez, our surgeon will open Tehilla's pulmonary arteries and put a patch on them to be the necessary size.

We are doing a heart catheter this Monday, November 3rd. There they will double check that the pressures in her heart are within the right range. As well, they will be checking to see that the branches of the pulmonary arteries, that are inside of the lungs, are the right size. We get admitted to the hospital on Sunday, where they will do blood tests and put in an IV. We then go home to sleep and come back for the catheter on Monday by 7:00am. They will keep her overnight and barring any complications, we should be released on Tuesday.

Dr. Golander drew us two diagrams. The first is just a sketch of the Glenn surgery. The second is the pulmonary arteries and the lungs. You can see the branches of the pulmonary arteries there.

Here is a video to quickly explain the Glenn:

I can't say that overall, we are feeling good about today's appointment. We are going into a heart surgery in a less than ideal situation. We have complete confidence in our surgeon and cardiologist, and will remind ourselves to think positively. 

Please have Tehilla in your prayers that all outcomes should be great. Nothing less than great. 

Tehilla bat Shoshana. 

Croup

What a night last night was! Exactly at the moment that Ron and I headed to bed, we heard Tehilla gasping for breath. Tzviel is an asthmatic with chronic croup, so we are no stranger to the sounds of croup and stridor. We quickly grabbed her and ran to our freezer and stood there, until she caught her breath. Then we wrapped a blanket around her and went outside for about 15 minutes, until her breathing didn't sound so sharp. We waited and then put her back to bed, only to repeat that episode 5 minutes later.

We couldn't get a hold of our cardiac nurse, so we called one of our PICU nurses, who is also a friend. She suggested that we go to the ER for an inhalation treatment. I am always hesitant to go the ER, for fear of exposing Tehilla to something far worse. We took Tehilla's saturation and it was ranging between 68-71. Her baseline is 74-78. For Tehilla, that's still not completely awful, as long as she is breathing regularly and there are no other signs of distress. We waited and took her saturation again. It was 75.

I sat outside with Tehilla for a little longer and then put her to bed. I then stayed up for an hour to make sure that she was okay.

Of course, Tzviel then had a croup episode. He's nearly 5 and refusing to take his daily puffer. So, it was a long night.

We went to the walk-in clinic this morning and had one of the on-call doctors check both of them. Tzviel received a stern talk about how important it was that he take his puffer. He hung his cute little head in shame and nodded obediently.

Tehilla is being put on an inhalation treatment, even though she sounds almost completely fine, as a precaution for 3 days.

On Wednesday, we have our cardiology appointment. We will find out if this will force a major delay in a catheter and surgery.

Shabbat Shalom

Tehilla  has a cold and had a very hard time sleeping last night from being so congested. We have a humidifier with some natural cold drops set up in her room and are giving her saline  nose drops. We are being vigorous in trying to keep this cold from turning into anything more.

This week is Tehilla's cardiology appointment and there is a strong feeling that she might be ready for her Glenn. So now would be a terrible time to get sick...

Here is a sweet picture of Mechal reading to Tehilla.

Have a wonderful Shabbat!

Meow

Tehilla is now cruising along all the furniture. She is babbling constantly and is definitely trying to get some words out.

Just before she opened her book Brown Bear, Brown Bear What Do You See? , her favorite, and found the page with the cat and said, "Meow!" Then she showed each of us and repeatedly meowed for us.

In other news, I've been asked to consult with the head nurse of the NICU at our hospital about ways they can better accommodate heart babies. I meet with her next week.

Birthday Party

On Friday, we had a birthday party for Tehilla at a local park. Many of our family and friends came. It was a beautiful day outside, with a slight breeze. Tehilla had skipped her morning nap, so she was cranky nearly the entire party. Ron and I have such a hard time believing that she is one years old already, and that we made it to this point. It was wonderful to be able to celebrate with everyone.

This past vacation was really wonderful for us, as a family. After our pre-Yom Kippur scare, we really made all the effort to make Sukkot and Shmini Atzeret/Simchat Torah very relaxing and fun for all of us and to spend time with our friends. It was very therapeutic.

Family Fun

Today, we went to Kiftzuba, an outdoor small amusement park, not far from Beit Shemesh (and our hospital). We got there 15 minutes after they opened and spent about three and a half hours there, with absolutely no lines. It was pretty empty while we were there. When we were ready to leave, we saw that it was filling up. We were very happy that we had an early start on our day.

This place has things like bumper cars, bumper boats, huge 4 story gymboree play areas, arcades, rides, some animals, and many little toddler play areas. I think it was perfect for the range of our kids' ages.

I took Tehilla into several of the toddler areas to play. It was very strange to see the comparison between babies within her age range. One thing that we have been asked, not by our doctors, but from many of the hospital pediatricians that have checked her throughout her various visits, "Does she tire easily? Is it strenuous for her to move around?"

For many heart kids, having the limited circulation in their heart makes it harder for them to do physical activity and they do tire much more easily. We have always answered, "We're not at that stage yet. She is just starting to crawl and cruise."

Each healthy baby follows their own individual rhythm to their development and truthfully it isn't wise to compare children. We have always seen Tehilla as climbing her pattern in a steady path, without cause for concern.

Today, I saw many babies varying in age range, and they were crawling and climbing all over the place. Tehilla crawled a bit, but mainly stayed close.  A big part of it was that Tehilla was completely overwhelmed by her surroundings. But it did make me wonder- does she lack energy to be active?

Whether the answer is yes or no, with her Glenn surgery her heart circulation improves and she will gain more energy. Later, after the Fontan, again, her heart circulation will improve along with her energy levels.

But regardless, we had a great fun family day!