Physically, Mentally, emotionally drained &’ numbed. We are trying so hard to keep pushing through the non- stop doctors appointments and therapies that continuously ripples through our week. Nearly everyday we are out of the house for a doctors apt or therapy session. I’m to tired to continue faking it anymore, pretending everything’s fine, telling myself this isn’t our situation but it is. It’s the fact of the matter and it’s beyond all of us.. I hope and pray to God no one has to endure the emotional and financial burden &’ stress of an innocent diagnosis of a sweet child.
My brain cant seem to shut itself down. It’s constantly running 90 to nothing. Denver has just recently started screaming every 30 to 45 minutes in her sleep. We’ve called her neurologist and they just want to keep pushing her seizure med dosage up more and more. Nicholas and I are continuously receiving bills from Denver’s NI stays, from the ENT and DLO etc.. We’re literally on the verge of going through an midlife crisis and we’re not even in our 40’s.
Never once did I think it was possible for a 21 year old new mom to feel overwhelmed with my child’s medical needs &’ the stress that comes along with the bills. Nicholas and I have hit rock bottom. We’re praying for a revival of health and Financial freedom in our lives. We’ve put my car up for sale, with great hopes of selling it. We can no longer afford the burden or stress of our house. So we have made the decision to list it on the market this coming month. I’m not sure what we’ve done so wrong in life to have the flood gates of hell open upon us. I don’t know how long it’s been since either one of us has had a full uninterrupted rest of 8 hours, or headaches or gone three consecutive days without breaking down to one an other.
My knees are so worn down from hitting them every night asking and praying to god for restoration of health and finances. You really do take your health for granted until you’re no longer healthy (for example, my kidneys, never once did I think twice about them, yet with my preeclampsia that never went away I have the constant worry of what’s going to happen next and if IHS will ever get serious about this protein urea battle, I’ve been long battling for 8 months now) or see someone so close and so innocent battling non stop incurable diagnosis and the only help is preventative therapies and treatment of the symptoms. I know most of our things can be replaced and they’re only materialistic items but this hurts beyond words, knowing we’re literally selling everything to our name, that we’ve worked so very hard for. I’m just praying for guidance and a clear vision of understanding this situation that’s beyond Nicholas and I. &’ I hope y’all can do the same for us.
UPDATE: Denver has been diagnosed with Epilepsy and 1p36 Chromosome Deletion Syndrome, which is very rare. As of right now we only know of 7 others in Oklahoma with this syndrome. One in OKC, but is under DHS custody and we are unable to meet them. There is no cure and will require a lifetime of care. Please keep them in your Prayers. ❤️
My name is Lorrie Blagg. My son and daughter in law, Nicholas and Cheyenne Blagg, have been blessed with a sweet baby girl, Denver Nicole. Denver was born August 21 by c-section, weighing 3lbs and 7 weeks early. It is my hope to help raise some funds for the ongoing care of their sweet baby girl.
Cheyenne spent 10 weeks in the hospital on bedrest after they were told by a specialist in Tulsa that Denver only had a 1% chance of surviving. Well, she has beat those odds and is still fighting. Denver has been in the NICU since birth and is expected to be there at least another two weeks. So many ups and downs, brain bleed, hole in her heart (healed), procedures, non breathing episodes, reflux, CT scan, x-rays, tests, blood transfusions etc. So much to go through in their first year of marriage and as new parents. Nicholas started a new job the day Cheyenne was hospitalized and has worked so hard to pay their bills. We are so proud of him and the support Cheyenne has shown.
While we are hopeful insurance will pay for most of the hospital stay, we are not certain. Denver will need special formula, a heart and breathing monitor, in addition to occupational therapy for her hands and feet since she is unable to extend her feet and some of her little fingers. The kids have been told that will most likely not be covered. Their hope is that they can get into the Children’s Center, but the doctor they are being referred to is full. So many unknown health issues for Denver and what the brain bleed and non breathing episodes may have caused. Any help would be appreciated and so helpful. Any funds not used for the care of Denver will be donated to Integris NICU to help other young parents.
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