Help Bring Riley Home After 210 NICU Days

After a truly God-led miraculous birth*, weeks of unbelievably specialized critical care to stabilize, months in the NICU, and several surgeries including gtube placement and tracheotomy, our Little Riley Roo is gearing up to finally come home!! Now we need some help getting home ready for Riley.

Much of the baby gear we have ready and waiting for Riley won’t meet his special medical needs. There are also many items we didn’t know we’d need that healthy babies don’t require. Both of his parents are unemployed teenagers and don’t have money.

The big thing we are looking to acquire is a medical crib. A Stryker Cub crib can be found used for roughly $2,500-$3,000. The benefits of that crib over a regular baby crib are numerous including being able to angle his mattress, which is necessary for pulmonary and gastrointestinal reasons. The biggest reason is that it has drop sides on all sides, allowing for quick and easy access in an emergency. The drop sides are one of the biggest things we need to allow us to be able to do so many things, including just suctioning him safely.

We can perform his cares right there in his bed if the sides drop, which is very helpful since moving him is a bit of a chore because his ventilator always has to be attached to him, and his g-tube feeds are attached 12 out of 24 hours each day. Just moving him from his bed to a changing table for a diaper change during the night would be much smoother on both Riley and his mama in a medical crib like we’ve been doing for months in the hospital. In all honesty, a diaper change will probably require that two people are awake without it.

The other big thing we must get is a double stroller - we need the extra space to carry all of his equipment. Part of the problem, as we’ve heard, is finding a stroller that can both carry all of the equipment & supplies required and distributes the weight in a way that doesn’t cause it to tip over. We’ll use it absolutely everywhere to at least carry his equipment and supplies that must stay with him even when we move him from room to room at home, so having one that works well is going to be essential to his daily safety. There are two options that have come recommended by many trach parents and both are $1,000. We need adaptable clothing, and organizing storage for his medical supplies as well.

Because his mom is needed at the hospital the majority of the time to learn how to care for Riley’s critical medical needs (which I can’t imagine doing as a single teenage mom!), caring for Riley, advocating for Riley, and being his voice since he literally doesn’t have one, she has been unable to go back to work yet. She does plan on working outside the home part time once Riley is home and settled into a routine, but because he needs to be attended to 24 hours a day by a fully trained, awake, alert caregiver her availability is extremely limited.

We’ve been covering all of the expenses related to his care; to being present in the NICU caring for him; and his normal baby expenses like bedding, developmental toys, wipes, blankets and baby equipment like bath tubs and swings. Any help you feel led to share with Riley and his mom will go directly to meeting these medically-related needs critical to his safe care at home.

Thank you!

*Little Riley Roo’s mom was sent to palliative care while pregnant with him because the chief specialist in his time zone was unable to deliver him and have him remain alive. Unacceptable to me, his maternal grandma or “Mimi,” I prayed and researched, researched and prayed. I opened my mind and computer to wherever God might lead us, knowing it would take a miracle to save my grandson.

Little Riley Roo had been diagnosed at 20 weeks with Pierre Robin Sequence. His mandible (lower jaw) was severely undersized and too far posterior (pushed back); which causes his tongue to block his airway since it has nowhere else to go; preventing his palate from closing or from him having a viable airway upon birth. He also had intrauterine growth restriction (IUGR)

God led us upstream to the founder of fetal surgery - where he literally performs surgery, closes mom up, and pregnancy continues - across the country to Children’s Hospital of Philadelphia (CHOP). 3,000 miles from home, my daughter and I arrived in Philadelphia just in time for Riley to be born via emergency c-section. His dad was asleep on the west coast when he was born; he awoke to the shock of pictures of his son - not in an ultrasound but out in the world. Little Riley Roo was born at 32 weeks 6 days, and due to IUGR was extremely undersized at only 1100 grams.

Chrissy and I spent two months alone together in Philadelphia while Little Riley Roo grew strong enough to be transferred back out west, where his long road of recovery would take place. After two months, he flew home in a private Lear jet medical flight. (Boy, is he going to be disappointed next time he travels!)

He’s spent the spring, summer, and now the start of fall in the hospital in Seattle growing, getting his tracheostomy and g-tube, and getting big and stable enough to come home! He still has a few years at least of surgeries, treatments, inpatient stays, and therapies ahead, but finally bringing him home will be a dream come true! ❤️