Friday, October 23, 2015

House of Sickies

Right now, Ron is the only one not on medication.  We are all sick. Little Tehilla has strept. We all went for a family outing to the doctor (we are fun like that). It was actually a last minute decision to ask the doctor to look at her too. She has been waking up at 4:00 am every day and has been crankier than usual. 

The doctor saw that her throat was red and normally wouldn't have looked further.  But because it's Tehilla, she ordered a rapid strept test and it came back positive.  So now she gets banana strawberry medicine.

We are all looking forward to a lot of rest this Shabbat. Shabbat Shalom, blog family!

Wednesday, October 21, 2015

Great and Not So Great Appointment

Today, Tehilla had an appointment with her cardiologist, Dr. Golander. She behaved very well for the echo, thanks to some YouTube videos.

Dr. Golander was very pleasantly surprised to see that her heart function has greatly improved! Unfortunately, her blood pressure is still very high. So, even though her heart function has improved, we can't reduce any medications, because her blood pressure is not under control.

Dr. Golander contacted a pediatric nephrologist for a recommendation for a blood pressure medication. He raised the dosage of her Enalapril and has added a new medication: Amlodipine. It has some side effects that we need to keep a look out for. Unfortunately, none of these medications come without some side effects.

I asked Dr. Golander what kind of time frame we are looking at for the Fontan surgery. Usually the Fontan is done around age 3. He said that we are looking at another year to year and a half. But she most certainly needs to have her blood pressure under control and not be on so many medications, to be a good candidate for the surgery.

For those that keep Tehilla in their prayers, please specifically pray that we get her blood pressure under control and are able to slowly wean off these medications.

We see Dr. Golander again in 3 months.

Saturday, October 17, 2015

2nd Birthday Party

 This past Friday, we celebrated Tehilla's 2nd birthday! It's crazy to fully comprehend that she is 2 years old. Astounding, really! Ron and I kept joking that it's too bad that we couldn't make it a Harry Potter themed party, because she's "the girl that lived." (All you Harry Potter fans will get that.) Thank G-d, it was a lovely Elmo themed party and some of our family and friends were able to join us.

 We made her an Elmo cake. I must give credit where credit is due and mention that I've been teaching Mechal how to bake and cook and taught her how to decorate cakes. She helped ice about half of this cake! I'm very proud of her!

 And, here she is, the little birthday girl. She loved her party and when we showed her the cake, she kept trying to stick her fingers into it. She was very excited!

 One of our closest friends, bought Tehilla this "bimba juke"! She was ecstatic and has been riding on it non-stop. Tzviel spent a lot of time with her, helping her to get used to riding on it.

 Some of our other close friends and their kids bought her a bunch of presents, so she could dress up. She is obsessed!

Most importantly, she went crazy for the cake! We all had a great time at the party. For our family, this was a huge milestone. Our family and friends carried us through the hardest moments of our life and it was so special to be able to celebrate these amazing happy moments. I can't believe that is has been two years, since this little sweetheart was born and since we started the hardest, but most incredible journey of our lives.

Tuesday, October 13, 2015

Tehilla and Hunter

Thank G-d, there isn't that much to report. Tehilla is doing very well. I finally unpacked the box with my camera and was able to get some cute shots of Tehilla. And of our cat, Hunter. Tehilla has been learning to stop smacking Hunter and pet her nicely. Hunter is very patient with Tehilla. She never attacks Tehilla back, and always gives her a chance to play nice. I am attaching a video, as well.

Thank G-d for no news.



Thursday, October 1, 2015

A Year

Dear Tehilla

To my dearest, sweet Tehilla,

Two years ago, I turned my alarm off, having not slept the entire night, and got out of bed. I looked around my room and wondered when I would be back home again. We woke Mechal and Tzviel, got them ready and out the door and off to school.

Two years ago, I took a shower and tried to stop my hands from shaking, as I scrubbed my enormously pregnant belly. You kicked me hard and I started crying. I nicked myself while shaving, and started bleeding heavily. I started panicking and breathing unevenly and your father had to help me out of the shower.

Two years ago, we took a taxi to the hospital, carrying two bags with us: one for me and one for you. I changed into a hospital gown and stared at the walls, while the hospital personnel swirled around me. They pushed my c-section ahead and I was grateful that the horrible waiting would end.

Two years ago, our family and friends raced to the hospital, so that we would have 10 men to make a minyan and name you right away. I walked into the operating room and had some wonderful surgical nurses who had looked over the paperwork before hand. They knew to stroke my back and give me knowing looks, but not to smile or act overly joyous.

Two years ago, a team of pediatricians walked in to the operating room with a bassinet. Everyone knew to talk in hushed tones. Your father came in and sat next to my head and they began the surgery shortly after.

Two years ago, you were born. You didn't cry at first, and I thought I would die. You let out a big shriek and I whispered your name, "Tehilla". They brought you quickly to us, so we could see you, and then put you in the bassinet and started cleaning you off and testing you. They rushed you out of the room and straight to the NICU.

Two year ago, your father left right after you, and rushed to the shul. Our family and friends had made it on time. A man that we had never met assisted your father in finding the proper prayer to say to name you. He then suddenly said the prayer himself and named you. We fondly joke that he may have been Eliyahu Ha'navi (Elijah the Prophet).

Today, you are a two year old little girl. You have big blue eyes and hardly any blonde hair. You are completely fearless. You laugh and run, and love to play dress-up. You smack the cat, and pick fights with your brother and sister who are double and triple your size. You demand drinking yogurts all day, and insist that everything is yours.

Today, you are strong, stable, and a complete joy. You have survived three heart surgeries, even when the odds were against you. You survived a heart attack during one of your three heart catheters. You have one more heart surgery in the next year or two.

Today, you bring smiles to our faces. You are a complete blessing and not a day goes by, when we don't thank G-d that you are here.

Happy birthday, baby girl!