Oakley ’s Story

Site created on July 12, 2023

• Hi, my name is Sorrel and I’ll be using this site to give updates for my daughter, son in law and my new baby grandson. Their names are Emilee, Isaac and Oakley. Emilee had a fairly normal pregnancy and was due with her first baby on August 3, 2023. Early in the morning on June 22nd Emilee felt like something just wasn’t right with the baby’s movements and was told to go to the hospital to be monitored. The decision was made to deliver the baby by caesarean section and Oakley Ryan Jonas was born at exactly 34 weeks (6 weeks early) on 6/22/23 at 9:19am at UC Health in Steamboat Springs, Colorado. Oakley struggled with respiratory and glucose issues and there was talk that he might need to go to Children’s Hospital in Denver. Oakley continued to make progress and the family settled into their new normal with Oakley in the Steamboat NICU and mom and dad staying in a room at the hospital. Isaac was even able to go to work during the day and everything seemed to be manageable. On Monday July 10th the doctors did some tests that revealed Oakley would need an MRI on his spine at some point in the near future, this prompted the neonatal nurse practitioner to also order an echocardiogram just to cover all of the bases. They were not expecting anything to come of it, but it did show an issue with Oakley’s heart. The care team in Steamboat decided that it would be best for Oakley to be transferred to Children’s Hospital in Denver to be monitored there in case surgical intervention is needed. Emilee and Isaac were told it will be happening within 48 hours. This will mean that Isaac will not be able to work as they live three hours away from Children’s Hospital. Mommy and Daddy need to be able to focus on Oakley’s care without the stress of wondering how they can pay their bills and pay for living expenses while in Denver. They are also leaving their support system of friends and family which is very difficult. Any monetary assistance is so greatly appreciated, but if you aren’t able to donate we ask that you keep this family in your thoughts and prayers! Oakley comes from a long line of fighters and we are confident that he will continue to make positive progress at Children’s Hospital like he has been here in Steamboat.

Thank you for your thoughts, prayers and support!!

I will post a link to the GoFundMe site and Emilee’s Venmo link if you would rather donate that way!

Newest Update

Journal entry by Sorrel Tritz

Today we are grateful for a successful spine surgery for Oakley! It was a long 3 hour surgery, but besides some extra bleeding the surgery went well. Oakley didn’t technically have a tethered spinal cord, but it was at high risk of becoming tethered. Most of our spinal cords end at the L3 or L4 and his goes to his L1. At the very base of our spinal cord there is a gathering of fatty tissue and this fatty tissue was very close to his spinal cord and if left untreated it more than likely would have wrapped around his cord and then it would cause several problems like nerve damage, curvature of the spine, deformed feet, incontinence and other problems. So with this surgery they cut away some of the fatty tissue to ensure that there is space between it and his spinal cord. The neurosurgeon was able to remove everything that he wanted after testing each piece of tissue to make sure that they weren’t cutting any hidden nerves. I was able to see Oakley after he was put in his room and he does seem to be hurting quite a bit. Luckily he won’t remember this since he’s so young. Please keep Emilee, Isaac and especially Oakley in your prayers and thoughts as it’s going to be a rough few days for them. Oakley will be inpatient for one or two nights and then they will be staying in either the Ronald McDonald house or a hotel until Thursday as he has a few other appointments with specialists. 
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