Saturday, January 30, 2016

76,262,634

Dear Blog Family,

My neighbor knocked on the door this evening. She had heard that there was a great need of prayers for Tehilla. She asked me to try to think of all of the miracles that we have seen G-d perform for Tehilla. I told her that it would be impossible to think about each one. Tehilla is a miracle. She asked me to thank G-d for each miracle. She said it would be most helpful to make a list and properly say thank you for each one. It sparked something inside me. So, I did:

1) Tehilla's birth
2) The doctor's knowledge to keep her alive until Day 3
3) Her Norwood Surgery on Day 3 of her life
4-21) Daily Miracles that led to her recovery from her Norwood Surgery and allowed her to be released at 24 days old.
22) In particular, her lungs opening up after they collapsed when she was two weeks old
23-31) 9 ER visits that she overcame
32-35) 3 heart catheters that she survived
36) Her BT Shunt Surgery done when Tehilla was 6 months old
37) Cardiac arrest during her second heart catheter. It took a total of 10 minutes to revive her to stability.
38) Tehilla's physical developmental milestones
39) Tehilla's verbal developmental milestones
40) Her Glenn Surgery done when Tehilla was 14 months old

If I wanted to break it down in reality, I should add another 76,262,634 miracles for every second that Tehilla has been alive.

G-d. Hashem. Thank you. Thank You for every second that You have given us with Tehilla. You have performed 76,262,634 miracles by allowing a little girl with half a heart to breath, play, sing, jump, walk, talk, heal, smile, hug, kiss and survive. Not just survive. Thrive!

The first step for Team Tehilla's Plan is really recognizing the ridiculous miracles that have happened. Our family (as in blog family) has been so blessed. G-d has performed miracles for our little Tehilla. I believe with all of my faith that He will perform many more. This last setback is just another opportunity for us to see miracles.

Friday, January 29, 2016

Formulating


Enjoy this picture of our princess heart warrior. I say "our" because you are our blog family. I am taking the weekend to better formulate the ideas I have for Team Tehilla.

Shabbat Shalom to all of you!

Wednesday, January 27, 2016

Fighting Gloves On

Today, really took me off guard. When Tehilla was first released from the hospital after her first surgery, I viewed going to the cardiologist as exciting. Granted, at certain points, we were seeing our cardiac team more than once a week with blue episodes and ER runs. But it was comforting to be surrounded by medical attention and exciting because we would hear just how well Tehilla was progressing. Life was all about getting out of interstage and getting to the next surgery. It could have also been a craving for human contact. We were very isolated back then.

But still, after Tehilla had her second surgery, we looked forward to every cardiology visit, longing for the ever evasive Glenn surgery that would bring us some stability.

Then, of course, she finally had her Glenn, at 14 months old. The first few visits were exciting. We liked watching the doctors amazed faces, as they stared at the miracle baby. The one that was not supposed to make it, but was before their eyes, chewing on tea biscuits and with big blue eyes.

After that, cardiology appointments became less exciting. It had nothing to do with our team of amazing doctors and nurses. It was an anxiety that had slowly creeped in. The "what-ifs". She was doing so well, what if...what if they saw something, what if something was wrong...what if.

This blood pressure problem wiggled it's stupid face into our lives and it became a matter of medications. Trials and errors and awful side effects. But surely in Dr. Golander's big bag of medical magic tricks, he would pull out the right one. Right?

So, today, when Dr. Golander's body language spoke miles before his mouth did- when his forehead was creased and he rubbed his head and then crossed his arms, I knew this last magic trick had not worked. But when his words came out and started circling in my head "catheter, narrowing aorta, hypertension", I laughed a really nervous awkward laugh. "Wait, what?" WHAT?!?!?!

I won't pretend that I was okay. I cried. I pulled over to the side of the road as I drove home and cried. I called Ron and told him the news and cried. I reached out to a heart friend and asked for a shoulder to cry on, and I did. E- thank you for letting me fall apart. I ate some chocolate, reapplied my makeup, and then gathered myself together.

And when I was ready, I looked at my phone, and found out that my previous post had been viewed over 1,300 times. It had been shared all over Facebook. People had left the most heartfelt and sweet comments. Your hope and love embraced me.

I posted last week about the pain being all around our heart world. I also mentioned that our home was surrounded by love and hope and how it carries us through. You are carrying us through right now.

So, now I've brushed myself off, washed away the tears, and have got my fighting gloves on. Tehilla's heart warrior cape (the real one) will be coming off of her shelf. We have the greatest support system in our blog family and we will lean on you for your prayers, your acts of kindness, your red shirts, your positive thinking and your hope. So, I suggest you all get your fighting gloves out too.

This miracle heart princess has been through 3 heart surgeries, 3 heart catheters, and one cardiac arrest (during one of the heart catheters). Nothing is going to keep this girl down.

Here is our fiesty heart warrior. Showing it to that spaghetti. No, for real. She is the strongest person I have ever met and she will show this CHD what a fight is.




All is REALLY Not Well

There will probably be several posts as I digest what happened today.

Tehilla went for a cardiology appointment today. Before every cardiology appointment, Tehilla gets weighed, has her blood pressure taken, her oxygen saturation  and heart rate measured with a pulse ox. We then wait to be called in for an echo with an echo technician and our cardiologist.

Tehilla's oxygen level was great for her (83) and she even went up a few 100 gr. (11.4 kg = 25 lbs). But her blood pressure was extremely high. It was 134/81.

Tehilla takes 5 medications a day- 3 of which are to control her blood pressure. We have tried quite a number of them, and yet, her blood pressure still remains extremely high.

The moment Dr. Golander walked into the room, Tehilla burst into tears. Watching some Peppa Pig managed to calm her down enough to carry out the echo.

Tehilla has Systemic Hypertension. This is is high blood pressure in the systemic arteries. They have tried everything possible in the way of medications. This indicates that there may be something anatomically wrong. The echo showed a very slight narrowing in Tehilla's aorta. On the echo, it seems almost insignificant, however, given her high blood pressure, it may be an indication of a problem.

They need to do a heart catheter. They need to measure Tehilla's blood pressure from inside of her heart, while she is sedated, to have a real indication of what her blood pressure is. They also need to check if there is narrowing in the aorta.

Her aorta was repaired and expanded during her first Norwood surgery. It could be that that area of the aorta is narrowing now. Here is Dr. Golander's sketch. The top left picture is the aorta after the Norwood procedure. The top right picture is what her aorta should look like. The bottom right picture is the narrowing that they suspect.



If during the heart catheter, they find a very small area where her aorta is bottle necking, then they will do a balloon dilation procedure. This is when they inflate a balloon from inside of her aorta and dilate the aorta.

If during the heart catheter, they find that a bigger area of her aorta is narrow, then she will need heart surgery. She will need an aortic valve repair.

This procedure or surgery must take place and her blood pressure must be under control before they can begin to discuss her Fontan surgery, the last surgery for the reconstruction of her heart.

Her heart catheter is scheduled for March 28th. We will be admitted the day before for blood work. 


I've been asked to buy an electric blood pressure machine and to make sure to meausure her blood pressure once a week. As well her Amlodipine dosage has been raised.

Here is a helpful infographic that illustrates the difference between a normal heart and a heart with HLHS, and the 3 key procedures in the staged reconstruction of Tehilla's heart. Tehilla has already had an additional surgery before her Glenn.


Now is the time to start circulating Tehilla's name for prayers again. I will post more later on.

Tehilla bat Shoshana

Monday, January 25, 2016

Cute Little Monkey

A certain little heart warrior princess may be on a naughty rampage. I can not confirm if she destroyed her big sister's beautiful wall decals and left her in tears. I'm sure all of those amazing magna-tile towers and lego structures that Tzviel built crashed on their own into little pieces. And my chairs must have colored on themselves.

Sigh. She is perfectly two years old- half a heart and all. In every beautiful way. Today she hit me and then told me she needed to sit on the stairs. I asked her if she needed to calm down and she said yes. She sat on the stairs for a minute and then said, "Mama, I ready off stairs now."

We have our follow up cardiology appointment on Wednesday. I hope that it will not get cancelled as we are eagerly awaiting a snow storm here.

Here is a picture and a video of Tehilla. Enjoy!


  video

Tuesday, January 19, 2016

When Pain is All Around

I live in a semi-real world called The Heartland. I live in a heart home with my beautiful heart family. We are a heart mama, a heart dad, two heart healthy siblings and our miraculous HLHS heart warrior diva princess. Oh yes, there's a heart healthy cat.

Our heart home is filled with love and joy. Our heart healthy kids know too much about medicine and our miraculous heart warrior knew where her heart is before she knew where her toes are. Our diaper bag has diapers, wipes, a change of clothes, a pulse oximeter and EMLA cream. The other day, one of my kid's nose was running and when I dug my hand into my purse, I pulled out gauze.

My Facebook newsfeed is filled with silly Star Wars memes, ridiculous sanctimonious mothers trying to out-mother each other, pictures of cute kids, and life-or-death questions that are posted by fellow heart mamas.

Running out the door with my three kids consists of: checking that everyone is clothed, wearing season appropriate clothes, clothes on frontwards and not inside out (Thank you, Tzviel), hair and teeth brushed, possessions in hand, and no purple lips or finger nails.

This is The Heartland. You are sad to welcome a new family into your special broken-hearts club. But you are just as determined to help them adjust to their new life as quickly as possible. You frequently are introduced to fellow heart mamas and find that you hardly have to say two words without being instantly bonded together.

This bond is based on the deep extreme desire for each other's kid to do well. You see, each heart warrior's success affirms our hopes that our own kid can beat the odds. So we are completely invested in each other's family.

This past week one of my heart friends lost their baby boy. A few weeks back, Mechal had seen me crying after reading a discouraging post about this little boy. She asked what was wrong, so I told her. She asked if she could pray for him. Yes, pray for him. Can she put his name up on the board at school? Yes, have your class pray for him. So, she told me how she had prayed for him with her friends. That little boy is gone now and I had to have the worst talk with Mechal. Nine and a half year olds shouldn't have to know about babies dying.

This past week, my heart friend's daughter went for a heart catheter. Now that beautiful heart family is trying to cope with their little girl needing heart surgery soon.

This past week, another heart friend's son went for heart surgery. He struggled and needed to be revived twice by CPR. They begged for a miracle. Their community and the heart community embraced them with prayer. Finally, calm came and he stabilized. They are cautiously pushing forward and, please (please please please) G-d, will continue to recover well. Mechal asked why we dressed in red for him. So I told her about this little 6 year old boy that needed support and prayer. That's what she did. She prayed for him.

This is our heart world. It's a little different than the rest of the world. Thankfully, our heart home is also surrounded by hope and an enormous amount of love. That hope and love carries us through. Especially when pain is all around.

Thursday, January 14, 2016

The Life of a Heart Parent

"So, how are things now that Tehilla is all better?"

"You must be so glad to be living life normally, now that Tehilla is doing well."

"It's so nice to see you worry free."

These are common things said to Ron and me quite frequently. The speaker is always well meaning and genuinely cares about Tehilla and my family. It never feels good to have to correct them.

"Actually, Tehilla is not all better. She never will be. She will live her life with half a heart and will always be carefully watched."

"Tehilla is not exactly well. She is in heart failure. Looks are deceiving. Yes, she's undeniably adorable and her skin tone is a beautiful shade of peach. But she needs 5 strong medications a day to keep her heart functioning."

"I don't think we will ever live our lives worry free. There are no guarantees. Tehilla looks great and has survived 3 surgeries, but she needs at least one more. A large portion of these kids end up needing a heart transplant later on. There is no telling what the future holds in terms of her health and future surgeries. We thank G-d for each day and live our lives in the moment. We push devastating thoughts out of our minds, we don't plan too far in the future and we don't take a single day for granted."


We are blessed. Truly and completely blessed by G-d. Hashem saved our daughter's life.  We live every day fully aware of how truly special our little girl is.

Tonight, a friend lost her baby boy to HLHS. My heart is broken into all kinds of complicated emotions. Ones that I can not properly articulate. My feelings are too raw and my arms ache to grab Tehilla out of her crib and hug her. (I won't because logic dictates that I love sleep too much.)

This picture of her is so silly and delicious that I find it soothing. It reminds me of the hope and light that we have to hold onto.




Monday, January 4, 2016

Off to the Stairs

Well, our little heart warrior princess has embraced being two years old completely.

Lately when she doesn't like something or being told no, she hits. Today she found herself being sent to timeout on the stairs frequently.

She yelled at me from the stairs, "I no stairs, Mama!" With her fierce glare and stubborn adorable pout, it's very hard to keep a straight face. Later she came and said, " Sorry, Mama."

Thank G-d repeatedly for normal toddler milestones.