Tuesday, August 30, 2016

Giving back: Ronald McDonald Family Room

There's a special place at Primary Children's Hospital called the Ronald McDonald Family Room, where parents and family of patients can go and enjoy a kitchen/meals, laundry facilities and a peaceful place away from the alarms and monitors. Taylor and I spent a lot of time there during Cooper's 14 week stay. On July 17th our family had the privilege of preparing and serving dinner in the family room to over 100 parents of critically sick children in honor of Cooper. It was a sweet evening serving in a place where we had received so much service. It brought back a flood of memories and emotions, but we all left with so much gratitude for all Primary Children's did for Cooper.

 Friends and family brought items to donate to the NICU to Cooper's birthday party, and we were able to deliver them :)






The best part of the night was walking out of the hospital with Cooper, and not without him like we did for 95 nights. 

A Year of Miracles

Cooper turned 1 on July 7th! It's hard to believe that one year has passed, and Cooper is now one year old (9 months adjusted). I don't really have words to describe what this last year has been, but if I could sum it up with one word it would be gratitude.

Cooper had a few doctors appointments in July and we have received a lot of incredible news about his development. He had an appointment at the Neonatal Follow-up Clinic at the University of Utah, where babies who were in the NICU at Primary Children's are seen until they turn 4. We met with the neurologist who followed Cooper at Primary's, an occupational therapist, and a neonatalogist.

When Cooper was one week old we learned that he had experienced severe bleeding and damage in his brain. Full-term babies blood vessels in the brain are fully developed, but preterm (and especially extremely babies like Cooper) are high risk for bleeds because the vessels aren't fully developed. For the first week of Cooper's life the doctors and nurses tried to move Cooper's tiny body and head as little as possible, as to lessen the possibility of bleeding in the brain. However, between a life flight and surgery in the first four days of life, Cooper did experience damage and bleeding. Taylor and I felt like it wasn't in Cooper's best interest to be very open about that information because there was no way to know what his future would look like, and we wanted to remain optimistic. But truthfully, Cooper experienced the most severe (grade 3 and grade 4) bleeds in his brain, and doctors told us that we may need to prepare ourselves for cerebral palsy and developmental delays.

Cooper has had an occupational therapist work with him once or twice a month since the beginning of the year, and she taught us exercises and things to do to facilitate his development. At first we were a little concerned that Cooper was favoring one side of his body over the other (a sign of cerebral palsy) but we worked hard with Coop to help him use both hands and legs equally, and he is doing so well now! Cooper is right where he should be developmentally for his adjusted age (the age he would be if he had been born full-term) and he's impressed everyone.

Anyway, at the appointment with Cooper's neurologist and the neonatologist, they were both extremely impressed with Cooper's development and told me the possibility of Cooper having CP was basically zero. It was apparent by the way they discussed his progress with me that Cooper is definitely not the norm for babies with grade 3 and 4 bleeds, and I got a little teary because I felt so much gratitude. Of course we would have embraced whatever quality of life Cooper might have had, but we're grateful that Cooper is developing normally and growing a strong, healthy, perfect body.




Cooper turns 1!

We had an amazing party celebrating Cooper's first birthday with lots of family, friends, and cake!  We're so thankful for everyone who helped celebrate our miracle boy and the journey he's had over the last year.