Tuesday, May 24, 2016

Bloody Hell

As I write this, I'm having to consciously remind myself to breath in and out to lower my heart rate.

There are a lot of things that being a heart parent has taught us. Probably the biggest, is how to handle a crisis calmly. Even more specifically is how to handle a crisis while not panicking our other two kids.

Tehilla. Oh, sweet naughty Tehilla. Ya see, she was supposed to be sleeping. She had a nice bath, brushed her teeth, hugged and kissed only the family members that she likes today and went into bed. We sang Shema and blew a kiss good night, then closed her door.

All was quiet for a bit, but then she called for me. I came in. She was upset that I put a fresh green sheet on her bed. It must be changed. No- It MUST be changed. Pink or purple. Those are the only acceptable sheet colors from now on. I realized that there was no hope of her sleeping unless her demands were met. Alas, in this battle I will accept defeat.

The balance of calm is back- until she MUST tell Ron "good morning" even though it is night. Fine. That's an easy one.

So when she cried again, I was not going back in. She had to go to sleep already.

...But her crying was carrying on and getting more spirited. So, I finally went in to see what was wrong this time.

Only to find her entire face, arms, and hands covered in blood. So, in my best "I'm calm, I'm calm but run like hell" voice, I called for Ron. 12 years of marriage and Ron can expertly decipher the exact shrill pitch of my voice to determine the situation. He runs up the stairs and calmly whispers, "oh my G-d!"

We grab Tehilla and start examining her, trying to figure out the source of the blood. Tehilla is laughing and finding the entire thing amusing. We can not find the source of the bleeding.

We grab wipes and start cleaning her off. She swats at us and gets annoyed. We ask her, "Tehilla, where are you hurt? Where is the booboo? " She points to some random spot on her body which of course is perfectly clean of all blood and seems fine.

After a few minutes of cleaning her off, we find a small scratch on her hand that looks fresh. We look at each other with knowing looks, now understanding that she gave herself a small scratch. But because she takes aspirin to thin her blood and prevent clots, it causes excessive bleeding. And because Tehilla is in this lovely toddler stage of smearing everything she can get her hands on (I won't mention some of the nastiest of things), she smeared it all over herself.

And that, dear blog family, is how Tehilla ended up looking like a novice vampire and scared the hell out of us.

Breath in. Breath out.


Here are some pictures of our heart warrior princess- half a heart and all!

I managed to capture her talking a lot on video, so I will upload that tomorrow.


Sunday, May 22, 2016

All is great

Oy, blog family! I'm so sorry for my lack of updates. Life has been good busy- the usual business of getting three kids from point A to point B and then several other places on a daily basis.

Tehilla is doing great. She had a little sinus infection last week, but otherwise has been doing well.

She seems to have had a little growth spurt and is finally looking her proper age of 2.5 years old. Her hair is slowly starting to fill out. And her speech has been amazing! Her personality is shining through in all kinds of funny, sweet and sassy ways.

The other day, she was in an Ima-only mood.  She wanted me to take her out of her crib, dress her, and feed her.  When Ron tried to take her for breakfast, she yelled, "No Abba! I want Ima. You stay here. No go downstairs."

I asked her to help me pick something up and she said, "Okay, Chickenhead!"

She has also started planning her third birthday party, which is not for another 5 months. It has to be everything Hello Kitty. And pink.

Her limping has thank G-d cleared up completely and she is walking and running nicely.

She is also VERY VERY VERY ready to be toilet trained. We are not doing it until after her Fontan surgery in July. It would be completely counter productive. That will, with G-d's help, be a fun adventure for after she is home and fully back to herself post-op.

Other than that, she is really a sweet, loving, beautiful little toddler. On Shabbat, she took Mechal's brush and started brushing her hair.

Tehilla: I brushing my hair.
Me: Yes, that's great. It looks very nice.
Tehilla : My hair is pretty.
Me: You look beautiful, sweety.
Tehilla: I bootiful princess. I Princess Holly! (A character from a show she loves)

This past week, we had- no, survived- a horrible heat wave. It was very hard on everyone but especially Tehilla. I had completely forgotten how hard the heat is on her. I was thrilled to find her at school purposefully placed right in front of the air conditioning. 

Other then that, everyone is doing well. Mechal and Tzviel are both doing great.  They know nothing about the upcoming surgery and won't know until two weeks before. 

I will do my best to update later today with a picture of Tehilla.

Monday, May 9, 2016

A Wakeup Call

Three weeks ago, just a few days before Pesach (Passover), Tehilla gave us a big scare. She had a cyanotic episode; she turned blue and her oxygen saturation dropped. We now kinda know that it was kinda caused by a sudden ear infection. Kinda.

Tehilla is now two and a half. We spent the first six months of her life in a phase called interstage. We were always on high alert, always packed for a trip to the ER and always not ready to say goodbye to her. It was a chaotic time of our lives and dull as heck. We saw no friends, we went to no get togethers. We were alone. Just our family and some infrequent visits from extended grown-up family. We spent about 80% of that time with our adrenaline rushing. It was hard and we made it through. Tehilla made it through.

She had her second surgery (not the Glenn) and things calmed down, to a certain extent, until she was in heart failure and doing terribly and her medical team made the decision to go ahead with her Glenn surgery, despite her chances of survival being very very low.

And then she survived that. Our insanely miraculous child. She was released quite quickly and we were careful post-op...but then normal life happened. She started to grow, she started to develop. She was walking and finally talking and getting into mischief like normal toddlers should.

And yes, we had the cardiology appointments, and the medicine changes. Yes, there were fears and worries at times. Many frequent times, but we settled into a new norm. A post-Glenn norm.

So we were unprepared for that blue episode a few weeks ago. It left us unhinged and terrified. It reminded us of the vulnerability of Tehilla's situation. It didn't wear off so easily. That shaky feeling. It stayed around for some time and had me checking on Tehilla twice as much, peaking in on her while she slept.

It reminded me that all I have is today. All I can do is hope for tomorrow, but today, everyone is healthy. Today, all three of my kids are together at home, having more-or-less normal childhoods. Today is a blessing.

The first day of Chol Hamoaid, we went to Nitzanim beach. The water was beautiful and the sand was soft. We sat and ate matzah, and collected sea shells. The beach is a very happy place for me. It is the first place that I ever let go. Here is a link to that post: Amazing Weekend. It is the first place that I forgot that I was a heart mom, holding a heart baby, in our scary heart world. I was just a mother, snuggling up with her daughter, and relaxing at the beach.

Every time that we are at the beach, I am able to let down my guard. I am able to do some soul-searching and reflection. This past time was no exception.

The water was too cold to comfortably enjoy. Mechal and I stood at the water's edge and held hands. We counted to three and ran into the freezing water. We would shriek and run out and wait a few minutes and try again. We did this a few times, and then Mechal had enough. But I stood there and counted aloud to three and then ran into the water until it was over my stomach. I didn't run out. I let the cold surround me and I felt more alive then I've ever felt. My blood pumping to warm my cold body and I felt so alert, so aware of myself- my life.

Life became so clear at that moment. I was done being worried. I thanked G-d for all the blessings in my life. I asked that Tehilla continue to be a source of praise for Him, as we prepare for her next surgery. I left the water feeling safe and strong again.

Thursday, May 5, 2016

Update 2- Leg Trouble

I WILL update this blog...I think I can, I think I can, I think I can...

Over the holiday (which I have yet to talk about), we noticed that Tehilla was starting to favor her right foot. She was definitely limping. She also started to do this thing- whenever she was trying to push herself into a run, she forcefully was swinging her hips to propel forward.

We kept an eye on it, but it seemed to be getting worse. After Tehilla's first day back at school, on Sunday, her wonderful teacher mentioned that she was concerned with Tehilla's foot.

Monday morning, I took her to see the on-call doctor. She checked Tehilla thoroughly. Tehilla was not in any pain when the doctor pressed all areas of her legs. The doctor determined that Tehilla had a viral infection in the tissue in her foot. She told us to come back for x-rays if there wasn't a significant improvement in her limping.

So, this morning we went back, after no change. Tehilla had many x-rays done on her leg and everything came back clean. We saw our incredible family doctor and he agreed with the previous diagnosis of a viral infection. He said that it should get better by a week's time. Unless Tehilla develops a fever or a rash, we should just wait and see.

It seems that Tehilla is not in pain, so that's positive. Thank G-d.

Tomorrow, I will update some more about the holiday.

Wednesday, May 4, 2016

Update 1- Fontan Date Change

I am so behind in updating the blog. I have been extremely busy- with good things, but crazy busy with work and family.

We had a wonderful Pesach holiday and I have so much to update about.  I am breaking the updates up.

First update-

The date of Tehilla's Fontan surgery has been changed. Her surgery will now be on July 3rd.