Thursday, June 30, 2016
We signed all the paperwork for the surgery and spoke with our cardiologist, surgeon and anesthesiologist.
Tehilla had a long session with one of the hospital teachers, who explained to her all about coming to the hospital, getting changed and ready and what the operating room looks like. Tehilla listened and understood everything. She was shown pictures and examples of hospital clothing, masks the doctors will wear, oxygen masks, hospital bracelets and medicine. They read a book together and then the teacher used Playmobil people and Playmobil hospital furniture to explain more about surgery. She let Tehilla play with the Playmobil and get comfortable with the concepts. It was an incredible experience which will definitely help Tehilla to stay calm before the surgery.
Our cardiologist and surgeon spoke with us and told us to prepare for a month long hospitalization. The Fontan surgery is unique in that the chest drains stay in for much longer, to clear fluid out of the lung cavity. These drains need to stay in for awhile, and because of that, the hospital stay can be longer. Sometimes, it can be longer than a month, and sometimes it can be shorter.
So, we are adjusting our plans for a month long stay and hoping for the best. Being in the hospital and seeing our medical team infused so much confidence and strength into our attitude.
We are home now and preparing for a really nice, calm and quiet Shabbat, filled with family time and hugs and snuggles.
Surgery is on Sunday, July 3 at 8:00 am. Tehilla needs to start fasting at 2:00 am and can drink clear liquids until 6:00 am. We need to be at the hospital at 6:30 am.
Please pass Tehilla's name on for prayer. Tehilla bat Shoshana
"He love me, cuz he check my heart!" Yes, my heart melted too.
Tehilla has had a chest x-ray and an echo. We are waiting for them to do blood tests, meet with anesthesiologist and then have the staff talk to Tehilla about her surgery.
Here is Tehilla with her cardiologist, Dr. Golander.
Wednesday, June 29, 2016
Tehilla was born with HLHS- Hypoplastic Left Heart Surgery. In utero, the left side of her heart did not develop. Essentially, she was born with half a heart. Since then, she has undergone 3 heart surgeries, one extra than the usual course, and four heart catheters. She is now going for the final stage of the reconstruction of her heart- the Fontan. Here is a helpful infographic, to understand what our surgeon, Dr. Erez, will be doing:
Each child with HLHS has a unique anatomy of their heart and statistics can somewhat be irrelevant when it comes to this situation. This surgery gives her the best chance at leading a more normal life, with more energy and ability.
We are going into this surgery with many positives:
Firstly, our doctors. We have one of the best medical teams possible who have cared for Tehilla since her birth. They make up some of the most impressive pediatric cardiologists and surgeons. We will be in one of the most advanced PICUs with some of the most dedicated and sensitive nurses. Tehilla will be in excellent hands.
Second- her health. We are blessed beyond measure that she is going into this surgery with good heart function and healthy blood pressure. This surgery is being performed electively at the best possible time for Tehilla, under the best circumstances. This is a huge advantage that we have.
Third- Tehilla herself. She is the fiercest fighter and has always amazed us and her medical team. She has beaten the odds when they were stacked against her, and even when there was little chance of her survival- she did! Her energy and strength will push her through this.
Fourth- our attitude. There are no other options. She will be fine. As she said to me today, "After doctor fix my heart, I come home! Hurray!" That is her attitude and must be our attitude.
Fifth- our beautiful, loving and thoughtful blog family. I have two bags filled with cards and presents from all of you. I've tried keeping it hidden, although a little toddler may have already sneaked a peak. Her hospital room will be decorated and we are armed with goodies to help her through the psychological trauma of this surgery.
We are counting on you and greatly need you to spread the word about Tehilla and ask people to pray. Please walk into your schools, camps, synagogues and churches, and community centers and tell them about Tehilla. We have witnessed the miracles that the power of prayer can bring. We need a miracle again!
Please spread the word on Facebook and other social media. Here is an image that you can use:
Lastly, on the day of the surgery- on Sunday, July 3rd, please wear red for Tehilla. Wear something red and take a picture of yourself. Put it up on Facebook with this text:
Wearing Red for Tehilla!
Spreading awareness about CHDs.
Who is your 1 in 100?
It might sound trivial, but the more awareness a cause gains, the more funding it gains. The more funding, the more medical advancement we can achieve. Please do this for us!
Tomorrow, is pre-op day! I will update the blog throughout the day. Let's get started, blog family!
Tuesday, June 28, 2016
We went to see our family doctor today. Tehilla has had a cold the last few days and it started not to look too good. Today, she woke up with her eyes crusty.
The doctor prescribed her antibiotics because it looks like she has a sinus infection, but right now, there is no taking chances.
We are getting more and more prepared for surgery. Arrangements have been made, packing lists have been done, and the stack of pictures and presents for Tehilla has grown.
A reminder to everyone: the name to pray for is Tehilla bat Shoshana.
Her surgery is this Sunday, July 3rd. Pre-op tests and sign-in are on Thursday.
Sunday, June 26, 2016
She is not going to school for this week and we are keeping her away from everyone outside of our immediate family. Because Tehilla likes to toy with us, she, of course, has a cold that I'm keeping a sharp eye on. I'll be taking her to the doctor tomorrow to get checked out to be absolutely sure that everything is okay.
Wednesday, June 15, 2016
We have spoken to Mechal and Tzviel about the upcoming surgery. They have taken it as best as they could and are talking to us about their concerns.
The other night, I spoke to Tehilla about her surgery, too.
While cooking dinner, Tehilla pulled a step-stool up beside me and incorrectly wrapped herself in an apron.
Tehilla: I help cook too, Ima?
Me: Yes, I'd love your help. Just no touching the cutting board while I cut the vegetables.
Tehilla: Okay. I have one? One tomato?
Me: Yes, you can have one.
Tehilla : 'Nother one?
Me: Yes, go ahead. Take another one.
Tehilla: Thank you! I love you.
While we stood there, me cooking and Tehilla eating the tomatoes for the chili, I realized we were alone with no disturbances.
Me: Tehilla, I need to talk to you. In a few weeks, we are going to the hospital.
Tehilla: Okay, Ima.
Me: We will see Dr. Golander.
Me: Tehilla, we are going to the hospital and Dr. Erez is going to fix your heart.
Tehilla: Oh. Thank you!
Me: Tehilla, it's not going to feel good, but the doctors will help you to feel better. Ima will be with you the whole time.
Tehilla: I feel better.
Me: Yes, they will help you feel much better. You will have to be strong and fight hard.
She was quiet for a few minutes and then said something that shocked me.
Tehilla: I go to hospital and doctor fix my heart. I feel all better. Lulu be strong and come back to Ima. Then I go home.
This brought tears to my eyes. To which Tehilla said:
You sad, Ima? Here. Wipe eyes. It's okay, Ima.
So, Tehilla understands a lot more than I thought she would. We are all in full preparation mode. Thank you to those of you who have sent pictures and packages. It means more than you know.
Monday, June 13, 2016
I should have included this funny story in my previous post. This morning, I had to check Tehilla's oxygen level and asked her to come to me.
Me: Tehilla, please come here. Ima needs to check your oxygen. I need to use the pulse ox.
Tehilla: Okay, Mama. You checking?
Me: Yes, I am. It's still checking. It's taking time. Please don't move.
Tehilla: Hurray! 48!
Me: What? 48? 48 is not good, Lulu. It's still checking.
Tehilla: 48! Woo-hoo!
Me: No! 48 is a bad number for you! Where did you get that? Oh, great! Look! You're at 83! That's amazing, Tehilla! That's a good number!
Tehilla: Hurray! 48! I got 48! Mama check me and I got 48! Woo-hoo!
Me: Hello? 83. 84 now! You're doing great. We can stay home!
Tehilla: Yes! 48. Tzviel, I got 48. I all better!
Thank G-d, we've got some time before she needs to learn to use a pulse ox!
Sunday, June 12, 2016
We have just finished celebrating the holiday of Shavuot, and nothing could mark a fun joyous occasion without a terrible scare from Tehilla.
We started off with a lovely Shabbat and holiday with our nephew, Ariel staying with us and meals with family and friends. We had a women's community get together and it was all just wonderful and fun.
Tehilla started off Shabbat morning with a very runny nose and a slight fever. Otherwise, she was herself. During the women's event that we hosted, Ron took the kids to the park. When he returned, Tehilla was purplish. We gave her a drink and time to cool off.
But then, she started looking pale and blue. We grabbed the pulse ox and quickly found that her oxygen level was between 68-74. Normal for her is 80-85.
I quickly called the on call doctor which, thank G-d, turned out to be our wonderful family doctor. He asked that we bring her immediately to his home to be checked and we would decide if she should go to the hospital. So, I quickly packed a hospital bag and drove to his home on Shavuot evening.
I can't say enough about our doctor and how comforting he always is. He checked Tehilla and right away saw that she had an ear infection in both ears. Her breathing was normal and while she was purple, nothing else seemed to be at play.
He wrote us a prescription for a very strong antibiotic and told me to take her home and keep an eye. If her oxygen saturation didn't go back up by the morning, then we should go to the ER.
I searched online and found the on-duty pharmacy, filled the prescription and took Tehilla home.
I should add that we had guests coming for dinner and Ron took care of everything with the help of our nephew, while our other two kids freaked out that Tehilla and I might not come back for the rest of the holiday.
We returned home in time for dessert to the elated faces of everyone.
Her oxygen was back up to 84 this morning. It started dipping low again, but I made the judgement call to not go to the ER and just watch her. For now, she seems well and the ER couldn't do more for us except expose Tehilla to something worse.
A lovely holiday except of course for this. This is the second time something like this has happened and it is not very common. We will be talking to our cardiologist tomorrow.
Sunday, June 5, 2016
After my previous post, I received a lot of messages, comments and emails about support for our family and the kind acts that they were taking on for Tehilla. It not only warmed our hearts, but it spread a blanket of calmness over us. It's an amazing feeling when hundreds of people let you know that they have got your back and they are standing by your side. We can't possibly express enough how much this all means to us.
We are lucky. We are blessed beyond measure. And we feel very positive going into this surgery.
Tehilla is not only stable but doing incredibly well. Those are the most ideal conditions to go into a surgery with. Our Tehilla is a fighter and we know that she will be the incredible heart warrior princess that she is.
There is an aspect of the surgery that I have not yet explained. It is very important that I explain it now to you all, because you can personally play a big role in helping Tehilla. This surgery has another aspect to it, that has not been a factor in her other surgeries.
Tehilla is older. She will be nearly 3 when she has the surgery. Previously, when Tehilla underwent surgery, she was too little to be aware and cognizant of what was happening to her. When she woke up and was still intubated or had chest tubes in, it didn't have any real effect on her.
There is an aspect of psychological trauma that occurs after the Fontan surgery. She will be woken up from anesthesia soon after surgery. She will be heavily sedated for the first parts, but soon after, she will be weaned down from sedation and pain medication. However, she will still have many tubes, IVs, and machinery hooked up to her. A big aspect of the recovery is that Tehilla will be uncharacteristically angry and distressed.
It is OUR job to help her through this difficult period. I say "our" because you can do a great deal to help. What we have seen that has helped other heart kids overcome this very traumatic experience is pushing back with decorations for the hospital room, toys, crafts, treats- Anything to raise her spirits and distract her from her situation.
You and your kids can draw Tehilla pictures or get well cards that we will hang up all over the walls. You can either scan them in and email them to me and I will print them out, or you can send them via mail. You can send us decorations. You can send us little treats and toys to give Tehilla frequently. Nothing extravagant, but any little part that you would like to play will help Tehilla directly. I would love to cover her hospital room beyond recognition.
Tehilla loves pink, purple and yellow. She loves Hello Kitty, Peppa Pig and Princesses. Anything that sparkles and shines brings a smile to her face.
You can email us at: firstname.lastname@example.org. You can send us pictures or cards. If you would like to mail something to Tehilla, email us and we will provide you with our address.
Thursday, June 2, 2016
Our family has a month. We have one month until Tehilla goes for open heart surgery. One month to try to squeeze a lifetime of happiness and memories into. The daunting date looms over us and it feels like an awful expiration date of the worst kind of unknowns.
It's too hard to write out the fears and worries that we have. July 3rd is approaching too fast and while we try to pretend that life will be the same as normal, it's impossibly hard. That soul-crushing "what-if" hangs over us and the weight is unbearable.
I find myself begging G-d a few times a day. Just give us this miracle. Please. Pretty please. It's not too much for You, G-d. Just this one more miracle. And then the miracle of every day after that.
And then I think to myself, what will it take for G-d to grant us these wishes? What do we have to do to make this happen?
And then the answer is clear. Change the world.
Remove the unkind actions, open peoples minds to the possibility of kindness in their actions and their speech. To ask G-d to allow a surgery that uniquely reconstructs a child's heart feels like asking G-d to move mountains and oceans.
We have an estimated 30,000 followers of this blog. These followers are located in all corners of the world. This is my one and only request- help me move mountains and oceans. Make changes in your corner of the world.
This is how it works: It starts at home. Today and tomorrow, when you find yourself getting frustrated with your kids or your spouse- take a deep breath for Tehilla. Think of her. And try for a few extra minutes to be patient.
Call or message that friend that you know is struggling, just to say hi- for Tehilla. Smile and say hello to the cashier, bus driver, crossing guard- for Tehilla.
When you are asked a favor, take a moment to think if you are actually able to and don't say no right away, just because it's a slight inconvenience. For Tehilla. Give that person a ride, pick up that person's kids, bring that person flour...for Tehilla.
Pay it forward for someone with your job. Help someone- for Tehilla.
Open your home to guests, drop off a treat for someone sick, take an extra moment to listen to someone's struggles. Do it all for Tehilla.
I believe that kindness changes the world. It has the magnitude to create waves in the world. That's what Tehilla needs right now.
We have one month. Just one.