Monday, August 26, 2013

Hold My Breath

Oh the irony of this song/blog title! "Hold My Breath," a song by a band I love called Holy Ghost! (The exclamation point is actually part of the band's name).

We just saw them, in Montauk, last Saturday night a few hours after returning from three days at Stonybrook Hospital. We were in the hospital, basically because Josie Held Her Breath.

At around 2:50pm Thursday August 15th, Josie was in her crib napping. She suddenly woke up screaming/crying. I was sitting on the front porch on the phone and Janice, our nanny, was in the bathroom just across from Josie's room. Neither one of us ever heard Josie scream like this before. I hung up and ran inside. Janice saw her in her crib, screaming with her arms and legs stretched out stiff. She picked her up and met me in the living room. I grabbed Josie and was petrified to see this screaming. It was like she saw the devil in front of her. Her arms and legs were stiff and she wouldn't stop.

I called 911.

At that time her face started to turn a tint of blue and her lips were clearly blue. She wouldn't respond to us and her eyes were fading off to the side. She wouldn't respond to us at all. Janice and I both thought she was dying at that moment. Janice was wailing, "Josie noooo." It was the scariest moment of my life. I started giving her breaths as I was answering the dispatchers questions.

"Where do you live?"

I gave her our Montauk address and said, "tell me what to do."

She said, "lay her down on the ground and listen for her breaths."

I followed her direction, but I couldn't tell if I was hearing breaths. Then Josie gagged. I sat her up and she threw up a little. I realized this meant she was breathing. I heard the ambulance outside. This was only about 4 minutes after I called. What seemed like 10 EMTs and police officers rushed in and one assured me she had color in her face.

I grabbed Josie to my chest and ran to the ambulance. I yelled for someone to get my phone, which someone did. I didn't grab my bag or anything, which never mattered. Within moments I was strapped to the gurney holding Josie as tight as I could in my arms.

It was 3:00 pm. I yelled for Janice to stay home for Tanner who would be getting off the camp bus in 30 minutes.

Josie was passed out on my chest, but the pulsox on her toe and the color in her cheeks all indicated she was fine. The ambulance flew to South Hampton Hospital, sirens blazing, passing every car on the road. I thought, ok now we're all going to die. The EMTs riding with us were so comforting though. I just held on tight to Josie, sleeping soundly on my chest. The EMTs thought it was a seizure. It seemed like a seizure, especially her passing out right after. But she had been tested 3 times previously for seizures and all 3 tests showed no seizure activity.

South Hampton was basically a layover. When we got there I asked to be transferred to Stonybrook, which has a great pediatric hospital. South Hampton doesn't have pediatrics. I knew we were going to need a pediatric neurologist.

So we did an overnight Video EEG to test Josie for seizures. The tests came back negative (exhale). The neurologist believes Josie experienced something called a "breath holding spell." Apparently, babies do this. They cry so hard that they wind up holding their breath and pass out. The good part is that once they pass out, they breathe again. Babies don't die from this and it can happen to any baby, healthy or not. The question is why was Josie screaming like Freddie Kreuger was chasing her? The suspicion is that maybe it was reflux.

Last year, actually the same week, we were in Westchester Children's Hospital doing the same test with Josie. That video EEG (VEEG) was negative as well and the neurologist diagnosed Josie with "silent reflux," which is why she was having the spasms that sent us to the hospital in the first place. We took her to a pediatric GI who put her on Prilosec, which did nothing. The holistic dr. we saw next, Dr. Palevsky said, "take her off Prilosec immediately, and take her off dairy." It seemed to be the answer, we didn't notice the reflux once she was off dairy.

But in the past few weeks before this incident she was doing the "spasms" again. I caught it on camera and sent the video to our LIJ neurologist, Dr Maytal. In fact, I spoke to him just hours before the incident occurred on August 15th. He said he does not believe what she is doing is a seizure. So we are investigating the reflux connection. She was has been eating baby yogurt again. Maybe that was it. We took her off a multi-vitamin that we noticed made her burp a lot. We also changed her bottle (almond milk) to a "reflux" style bottle. Before we change too much, we want to see if that helps.

I'll take her to see another GI, and I am doing another saliva test with Wanda (our naturapath) to see if she sees anything that could be the cause.

So for what was an incredibly terrifying experience, it turned out not to be a huge deal. Jojo doesn't have seizures, and we will get to the bottom of the reflux. I was incredibly grateful how quickly the ambulance showed up, how comforting the EMTs were, and to have learned that in moments like that, the mama-bear-instinct kicks right in. I became calm (although frantic inside), and I was able to do what needed to be done.

So how was your week?

Anyway, while I thought our plans to go see Holy Ghost! that Saturday night would never happen. We did go. They played "Hold My breath" I danced my butt off..and I exhaled.


Josie with Daddy in the hospital. Rich got from the city to Stonybrook before we even got there!


My sleeping accommodations night 1. This chair is like a movie theater seat that reclines with your body weight. So between the night nurses talking outside our door, the person coming in to check vitals, and this chair that I couldn't lean back in, sleep wasn't an option.


Only Josie can still look adorable and beautiful with her head wrapped up.


Avatar? Buddah? Rapper?


On our way home!!


Holy Ghost!








Monday, August 12, 2013

My Little Girl (on a lighter note)

The blog title is a song title.. My Little Girl - by Jack Johnson.
The lyrics go like this:
Hey little girl.
Look what you've done.
You've gone and stole my heart and made it your own.
You stole might heart and made it your own.

Jack was actually on our boys names list, and then we'd have our own Jack Johnson, but Tanner won.

Anyway, GOOD NEWS!!! Josie weighs almost 21 pounds! I brought her to the gym in Montauk to weigh her and as we suspected, she has gained about 3 pounds! If you've been following this blog, you know what a big deal that is! She's also getting closer to rolling on her own. She was never able to pull her arm out from under her while practicing rolling and now she can. She continues to show real signs of improvement. And she is just so so sweet and adorable.

On a separate note, I am in search of more doctors. We're looking for a new neurologist, and any top docs who specialize in developmental delays, brian injury, etc. I just want to keep up the search for Dr. House. He's got to be out there. There's got to be someone out there with more answers and more ways to help. Josie is so young with such tremendous brain plasticity and will, I'm desperate to find more help.

Here's Josie and daddy having fun at the beach...