Tuesday, April 21, 2015

Sweet Little Avalynn's Preemie Prints Photo Shoot

Please enjoy Preemie Prints' families’ inspirational story & photos. 
Consider supporting our mission to share hope with families who have a baby born prematurely or critically ill. We thank our supporters, Preemie Prints volunteers, and donors for allowing us to continue touching the lives of NICU, preemie, and angel families.

We pray these special memories from Preemie Prints 
will help families heal and remember how strong 
they were in overcoming their NICU journey together.

“Avalynn was born February 25, 2015, she arrived in this world after 38 hours of labor and an emergency c section. Avalynn has a lethal form of skeletal dysplasia. This condition has left her with several abnormalities, in her skeleton. She has fused bones in her hands, spine, and rib cage. She is missing the lower half of her spine, as it never grew. She has a clubfoot on the left side, and twisted foot bones on the right side. Her hip bones are smaller than they should be. Her rib cage is also too small in diameter and length, which prevented her lungs from developing. She is basically trying to support her body with half a lung. She is also incontinent due to the lower spine missing, and may become a paraplegic as she grows and her spinal chord gets cut off. Her heart is also trying to help compensate, but its pressure is high, the atriums aren't doing their job properly to keep the flow right, and it is slowly enlarging.

As she continues to grow her lungs will grow also, but because of the small, abnormal ribs, her lungs will ultimately be constricted. As they continue to constrict she won't be able to support her growing body. As the doctors said, "It's trying to support an infant body with newborn lungs, it just doesn't work."

Avalynn has one chance at survival. It's the Vertical Expander Prosthetic Titanium Rib Surgery, or VEPTR. It will act like reverse braces on her ribs, allowing them to grow as she does, and thus giving her lungs room to grow as well. She needs to be at least a year and a half to get this surgery. Once she has it, she will need surgical adjustments ever 4-6 months until she reaches 21, or her skeleton stops growing. Each surgery means a 6-week hospital stay. Only 9 hospitals in the USA perform this surgery, as it is rare, and was only developed in 2005. They can perform it in San Antonio, Texas. Avalynn lives in Houston. So there will be many travel expenses, unless Cody and I are able to find employment and move there.

We hope that Avalynn will be able to survive long enough to receive this life saving surgery. However even after that surgery is performed she will have many obstacles to overcome. As of now she would not be able to walk, or even crawl, she will be in a wheelchair, in a diaper and on oxygen and pressure and a feeding tube her entire life.

Cody and I were completely shocked at the difficulties Avalynn was born with. I had normal prenatal care, including ultrasounds and numerous doctor's appointments. No-one ever suspected a problem. Even after Avalynn was born my OBGYN, went and looked over the ultrasounds, and knowing Avalynn's difficulties, still saw no signs of it. Unfortunately this frequently happens with skeletal dysplasia babies.

Avalynn has been living in the NICU at the hospital since her birth. Cody and I have started hospice and end of life care, and so should be able to take her home soon, and give her the same medical care there. She will continue both her concurrent and hospice care and therapies, meaning we are treating her for life and death.
Signing her DNR was the hardest thing I've ever done.

I've never felt grief or love so deep before her. Taking each day at a time, relying on friends, family, God, doctors and other NICU parents helps. So does thinking about Avalynn being smart with me as a teenager. Something so normal compared to now.

God speed.”

Avalynn is starting her home concurrent therapies, occupational, physical and speech. She has started having build up of secretions & the doctor's say this is the beginning of decline to death with her restrictive lung syndrome. Other than that, she wore her first swimsuit and hung out with the family at grandma's pool, is starting to hold her head up and is sucking on blankets. She sleeps all but a few hours of each day, but when she's awake, she is usually all smiles and curious about  the world around  her. Cody and I are planning a trip to the zoo or anything aquarium, kind of a baby bucket list, before the medical equipment for her life support is too extensive to transport her.”

A Note From Karina:
“Avalynn was such a joy to photograph. She looked lovely and was a good sport with all the moving around we did. She slept through it all! The photos show how much she is loved, her mommy and daddy couldn't stop kissing their sleeping beauty! :)
Their love brings courage and hope!”

Photos belong to our volunteer photographers, families, 
and organization please do not use for any purpose. 

Preemie Prints is a 501(c)(3) nonprofit organization sharing hope with NICU families through a variety of support programs. One of those programs is the gift of NICU photography and preemie photography. NICU families from across the US can request a no-charge photography session by a Preemie Prints volunteer. The family request from can be found on the right side of our website. These sessions are free of charge and for any NICU family, regardless of time spent in the NICU. The NICU photo shoot can take place inside the NICU or after baby is discharged and at home until their 1st birthday. Facing time in a NICU with a premature or critically ill baby is an extremely difficult time for families. Preemie Prints has a mission to share hope by letting families know they are not alone. Preemie Prints currently has over 100 volunteers nationwide. We are always looking for more volunteers to share in our mission! If you are interested, please email sherri@preemieprints.org and visit our website at www.preemieprints.org. To date Preemie Prints and our volunteers have gifted over 400 NICU family sessions. 

This was a Preemie Prints NICU graduate photography session that took place near Spring, TX.

We're thankful to the family for sharing their story & memories in support of other NICU families.

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