When Olivia’s mother, Alexis, wrote me to tell me about how Nesting Days had helped her and her family care for Olivia I was deeply touched. Olivia was born with Prader-Willi syndrome, and Alexis has graciously let me tell her family’s story so that other families with special needs babies might also ‘nest’ their babies safely and gently, skin-to-skin and heart-to-heart.
I purchased your floral carrier at the end of February, our baby girl was
due at the beginning of March. She was born March 3, 2014 in Stockton CA. Two days later she was transferred to UCSF in San Francisco. We packed up our whole family and ended up there for a month. I didn't know anybody in SF and almost emailed you to see if you could come sit with me in the hospital. Our baby, Olivia was hooked up to so many wires and had hypotonia (floppy baby) so holding her and bonding with her was hard. She was full term and none of the nurses offered any skin to skin time, her condition scared me and I worried about holding her properly.
A month later she was diagnosed with Prader-Willi syndrome, she has a feeding tube and low muscle tone. Even now at 3 months old she can't hold her head. When we got her home on April fourth I wasn't sure if I could use your carrier with her special needs (thought about emailing you again). I carefully put her in, making sure not to put pressure on her tube, the fabric strongly supports her head, the position of her neck and head I wasn't worried about her suffocating. For the first time since her birth I felt like we could bond! She is now 3 months old and weighs 11+ lbs and 23 inches long. I tried to put her into an ergo carrier the other day and that isn't going to work for quite awhile....she just doesn't have the muscle tone to sit properly in them.
I wanted to let you know how much I love your carrier, it's been the only one I can use for her special needs and has given me the opportunity to bond and love on her, that it wouldn't have had otherwise. If she can continue to use your carrier for a few more months I've toyed with the idea of ordering your polka dot one, love that fabric!
A week later, I met the whole family when they returned to UCSF. Alexis really is a beautiful as she is in her pictures, Isaiah (7) loves to make Olivia smile, Addison (2) napped the whole time in the giant double stroller (Olivia occupies the seat next to her), and Kurtis, well, he is their ‘rock’. Alexis put on the polka dot Nesting Days I brought with me, and modeled it right away. Olivia clearly loved being heart to heart with her mom. Alexis pumped and fed Olivia her breast milk via a feeding tube in her tiny tummy.
Today, I received a video of Olivia, and I was delighted to see how she has grown! She is a baby greatly loved.
Being a parent requires us to respond to the vulnerability and dependency of another human being, and in Olivia’s case, that vulnerability and dependency is even more pronounced. Alexis and Kurtis know they have a long road ahead of them.
Nesting Days has made a donation to the Prader-Willi California Foundation to help families with Prader-Willi syndrome, and the professionals who serve them.
In the words of Jane Austen, “There is no charm equal to tenderness of heart.”