"Hope" Elizabeth Niemiec

May 26, 2007 Saturday

Quite a few of you have been asking about my sister Cheri's baby. The last entry I made was about her going into labor. And I was excited for her.

I did not further mention in this blog, if it was a boy or girl and how the whole labor came along. I myself was in limbo not knowing what the news was as I could not get a hold of any family members, nor could I just pop in and see my sister as she lives in the Chicago area. In addition, the nurses would not give me any information due to the HIPAA law (Health Insurance Portability and Accountability Act). If they did, it would be a serious breach of patient confidentiality. Frustrating, when you really need to know if your sister is ok.

Finally one of my brother's, Fredi, tells me the news...bad news. I had to ask over and over again if he was kidding me, and he could only say he wish he was. I had a big lump in my throat, and I wanted to cry...and I wanted to speak to Cheri, but knew she did not want to speak to me, at least not now. So I could only send her a message, to contact me when she was ready.

Hope Elizabeth Niemiec was born on March 19, 2007 at 11:16pm. She was 7 pounds, 13 ounces and 20-inches long. Despite the epidural, labor was difficult for Cheri, as she was born with her head facing the wrong direction and was stuck in the birth canal for approx. 2 hours. Finally, Elizabeth appeared (no c-section) and it was then that Cheri noticed something was not right. Even my mother had missed it...the baby had deformed hands. Within seconds, a team of medical personnel rushed in and took Elizabeth away.

My sister was devasted.

I had not known that there was suspicion of possible complication during her pregnancy. Cheri had an ultrasound that alerted the tech, as the fetus was missing the bridge between the left and right hemisphere of the brain. This concern led to a MRI, which concluded the bridge was present but 'thin'. The neurologist was not concerned, informing that motor vehicle victims that have diagnostic tests done, may be found to have this missing bridge, yet they fully function well. And when the doctor didn't appear worried, my sister did not worry. She also decided against an amniocentesis, as she had it in her mind (and in agreement with her husband Matthew, ) that they would not abort the fetus no matter what.

So yes, it was a shock to the family. Hope was born with an elongated head and with no brow. Her fontanelle's (the soft spots) on the top of her head and at the temples had closed well before she was born, therefore forcing her head to grow upwards. Her feet are webbed. The bones are present but the skin did not seperate. And the fingers of her hands are joined, (with the exception of her thumbs), and they share the same nail. The best way to describe this would be like a "lobster claw".

I was in despair for over a week, my heart was too heavy, and I was looking to blame God for this. I mopped, I couldn't think of Cheri without starting to cry. And my heart went out to her, thinking how she must have felt, for a nightmare like this to materialize. And then I thought of Hope...and I hoped she would not have any neurological damage, and hoped that our medical technology could do something to release her little toes and fingers... so she wouldn't have such difficulty as she grew older.

Cheri called me a few days later, describing all this in detail, how she was hurting so much, how she could hear babies crying and being tended by their mothers...and here she was in the hospital for the night, not having her own baby to hold, as Hope was admitted to the Children's Memorial Hospital in Chicago. Cheri was miserable. When she was finally released, she and Matthew visited Hope, Cheri still in a wheelchair, (unable to walk for a couple days) as she was in pain and her legs were not strong enough to support her.

I am not sure when Elizabeth was given the name "Hope" - whether it was at birth, or months before. But yes, she does instill a lot of hope in us all- that she too would still have a chance to have a happy and fulfilling life, and hope that life would not be difficult for her.

This condition she was born with is called Apert Syndrome, which affects about 1 in 100,000 individuals. This would not have been detected in an amniocentesis had my sister had one, as it's occurence is rare and there are so many other anomalies to test for- Apert would not have been suspect.

And with my sister's permission I was allowed to discuss this (I also wanted to make sure she was ok with my blogging)- and this information may not be accurate, but it is close enough.

To read more on Apert's, please click here: apert sydrome

Hope, will also be having cranial surgery come this August. Please e-mail my Cheri and her family your good intentions. I think they will greatly appreciate your words of encouragement. cdniemiec@yahoo.com

And with love, hugs, and kisses- I still welcome Hope into this world...and we hope you will too.

From Carmel to San Fran, we shoot a wedding...

View through a window at the Tickle Pink Inn in Carmel, CA.

Whew! I have finally edited over 1,000+ photographs, color-corrected and retouched them and posted it on the world wide web. To see the slideshow of the wedding I worked with Alejandra- click here- http://amoreimages.com/Kacie_Chuck/

Alejandra and I left for Carmel to shoot a wedding on Avila Beach (April 27-28). It's a gorgeous beach I had car-camped out with Greg several years ago. I envy the owners with oceanfront property. Imagine waking up to this every morning and smelling the fresh air and hearing the waves crash... dreamy.

Lunch on the beach before we start our shift. That's Ale, she's pretty shy until a camera is pointed in her direction. I thnk she's waiting for Fabio to walk by...

This couple had their wedding in Carmel and the following day had their reception in a private hall, the top floor of the Fairmont in San Francisco. Personally if I was a guest, I would have been too exhausted to travel from Carmel to San Fran, and then to party again? So I was impressed that her wedding guests attended the reception the following day. But most of all, I was honored to be their choice photographer to record their special day. I was fortunate to be given the opportunity to work in such a beautiful environment.

Anyway, I just wanted to share some photos of our little exciting journey!

CARMEL PHOTOGRAPHS

Wedding held at Avila Beach in Carmel, CA. (pix taken by Alejandra).

What a handsome couple!

The oil painting that was completed during the ceremony. I thought this was a wonderful idea!

I love this image I took of the bride. She just looked so care-free, so happy!

I couldn't resist stopping to take some scenic shots of Carmel on the way home.

Video of Carmel: a panorama of the ocean.

Monterey Photographs

Abalone, I think not! At the Fisherman's Wharf in Monterey.

You gotta eat the clam chowder in a bread bowl here! It's to die for!

San Francisco Photographs

(at the Fairmont Hotel)

I always get nervous near the cake. Leaning in to take close-ups of the detail on the cake, it would be a tragedy if I ever fall into it.

Ale posing for some test shots. There was this terrific panoramic view of the TransAmerica building, the Coit Tower, and the Bay Area. Breath-taking views from the Fairmont.

Me, with the big tupperware on my flash.

Bridesmaid catches the bouquet.

Afterwards we check out the Tonga Room in the Fairmont. This place is great for its mai tai's, floating band in a pool, simulated thunder/rain showers, and actual parts of an old ship that make the dance floor.

Greg Kitesurfs Pismo Beach

Pismo Beach, CA May 19-20, 2007

While Kai and I were doing the Bay to Breakers, Greg was boosting off the waves at Pismo Beach. This weekend was a big expo with several kite manufacturers to promote their products. Greg got the opportunity to test several kites. I would have gone with him to Pismo but it was too last minute and it conflicted with our run to be had with other friends.


And just like driving a new car, you feel a little intimidated as did Greg when testing a new kite in strange waters (he kitesurfs in the Bay, not off the ocean) especially with hundreds of kiters boosting into the air and in close quarters.


Greg came home Sunday just in time to put Kai to bed, as Kai appeared to be out of sync the night before as his daddy was not there to do his bedtime routine as usual. Greg enjoyed Kai's enthusiastic welcome "run-to-daddy" and embrace.


"Vannie" as Greg nicknames our camper Vanagon. Test kites available.

All these images were taken by Greg's buddy Fred, who is a professional photographer in the fashion industry. He started photographing celebrities about 3 years ago, such as Robin Williams.

Greg boosts 15-feet above the waves.

Photograph of Fred with his camera secured to his kite. That's a dolphin alongside!