We are sharing this story throughout our media sources in support of Lynsey and their family’s struggle. A struggle not uncommon to my wife and I. Our son, Brayden, was born unexpectedly without warning at 26 weeks and weighed just 2.6 lbs. He was immediately hooked up and prepared for a Flight for Life to Denver, Colorado. A mere hour had passed since we had dropped off our older daughters at Camp Rock in Reddington, Nebraska and now our only son was on a jet without us. We quickly arranged for plans to live in Denver for awhile.
It was a long struggle that took 90 days in the NICU (Newborn Intensive Care Unit) at St. Luke’s Presbyterian in downtown Denver. Our son was not only premature by several months for no known reason, but also was experiencing Bradycardia, a condition where your heart stops beating. When this happened we had to shake him until his heart would ‘wake up’. We learned that it was caused by a faulty PDA valve and the decision to surgically repair it was an easy one.
Fortunately, through months of prayer and endless faith, the story had a happy ending. Within a year Brayden had reached the ‘normal growth’ threshold and since then has not experienced a single issue that we know of. We are so thankful for all the encouragement and prayers we received from the community.
I told you our story to offer encouragement for Lynsey and her family on baby River. Let’s all band together and provide prayer for answers and support for this young family. Below is Lynsey’s story she asked me to share with you.
Update on River James 2/8/2023
River had his second sleep study done last night and with those results we finally got some answers …. And a few more questions. The results showed that he has severe sleep apnea. He shows both central and obstructive. He stops breathing an average of 74 times and hour. We are going to try to keep him on oxygen during the day when he is more awake and put him on Bi-PAP at night. The Bi-PAP is a form of a ventilator that will assist him in breathing through out the night. If he goes below a determined amount of breaths the machine will kick in and breathe for him.
Even though this is scary and not ideal for a 2 month old baby, it is better than the alternative of a tracheotomy and ventilator, as it is less invasive. We will also be doing a ct scan with contrast to see if we can find the obstruction. Redoing the triple scope procedure is also on the table but I have a big worry about how he handles being put under sedation.
We will be going day by day with what will come next but for this exact moment we have figured out how to keep him safe. I am so thankful that I followed my momma gut and kept fighting for him knowing something was wrong, even though the doctors didn’t see it yet. We will be staying in the PICU until more answers can be found and he can prove he will be stable.
We have a very long journey of a lot of unknowns ahead of us but tonight I am thankful he is safe. I pray every day that he will one day get to enjoy a “normal” life but this is our normal right now and I cherish every cuddle I get.
Today we are RIVER STRONG!!
Update 2/2/2023
Dear River James, I pray every day for you to become big and strong. That you will be able to overcome all of these unknowns. You are mommas little fighter and you make me more and more proud to be your mom every day. I pray that you will get the opportunity to grow up playing in the dirt with your puppy dog, Bear. You amaze me daily. I told you when you were born that you were going to change the world…. I just didn’t think it would be so soon. You are stubborn and have an attitude like your momma already. I pray to one day have the same amount of strength you have. I love you more than I can put into words. – Love, your momma 💙
Update on River James 1/31/2023
My poor River James. He had a horrible night last night. His heart rate went down to the 60-70’s and his oxygen went to the 40’s. We had been on the pulmonary floor and were very quickly rushed down to the ICU. He now has a feeding tube again and is on Bi-PAP. I am absolutely heart broken. I haven’t stopped crying because his little cries are just hurting my soul. We have now come to the point where I’ll most likely have to get rid of my house. We have a very long journey ahead of us in the hospital and I no longer have a job to rely on income. I pray tomorrow is a better day. Lord please protect my baby. I’m just hoping he survives all of this to be able to go home one day. I am scared.
Update on River James 1/30/2023
He had an apnic spell yesterday afternoon that lasted about 30 seconds. He has been having some rough nights and it all came to a head yesterday. We think he has a stomach bug and was constantly throwing up everything yesterday. He would wake up screaming in pain. Around 1am they decided to place an IV in his head to help get him some much needed fluids. All he wanted was his momma so we slept in the chair together.
Poor baby just can’t catch a break but is getting the help he needs for this situation.
Prayers we both get some much needed sleep today.
Update on River as of 1/26/2023
We had our care conference yesterday…. we are basically in a holding pattern at the moment. The doctors need the genetic results in order to ask for the correct help. CCHS is the turning point that we are at. If the test shows that his genes are mutated, then we have a path that we can go down. If his test comes back normal, then we know the types of questions we will ask other institutions.
I have been overwhelmed with the love and outreach everyone has shown to us sharing our story. Thank you from the bottom of my heart! I will not stop fighting to find an answer for River to keep him safe.
I have written out River’s story so far in hopes that as many friends of mine will share it as possible. We are to the point where the doctors do not know what is going on and I am trusting in the power of networking to hope the right person sees our story and can help.
River was born on 11/29/2022. He was born at 37 weeks with the assist of the vacuum. When he was born, he was not breathing at all and had to have CPR preformed. His oxygen saturations continued to drop consistently so he was placed on CPAP for the first 3 days of his life. The next 3 days were filled with weaning him off oxygen.
He was sent home on December 3rd and was rushed back to the hospital on December 9th due to breathing problems. We were then flow down to Children’s Hospital of Colorado and admitted into the NICU. They ran every test to check his head, heart and lungs before releasing us to go home on December 12th on oxygen.
We were only home for 3 days before I had to call 911 to get help during a bad blizzard. It took 911 over an hour to reach us and get us to the hospital. Once we were finally in the ambulance, River’s oxygen and heart rate dropped so low he had to be bagged 7 times on the way to the hospital. The hospital flew us once again down to the Children’s Hospital. We have been at the Children’s Hospital for 40 days now with no end in sight. The doctors still have no answers as to what is going on. He will go completely limp, lifeless and not breathe for up to 4 minutes at a time. He so far has shown normal on every test we have done. Those tests include EEG, sleep study, triple scope surgery, MRI, echocardiogram, bronc scope, lumbar puncture, multiple blood test and genetic testing. We have ruled out any GI issues as the cause of the episodes. His episode on Saturday 1/21 lasted for 4 minutes and included over 2 minutes of bagging and CPAP to help regain his ability to breathe on his own. His oxygen dropped down to 34 during this episode but he maintained his heart rate.
As I am writing this today (1/23) River has had 3 episodes in the last 12 hours. He had his oxygen and heart rate dropped last night for a brief period. This afternoon his oxygen dropped to 64% and about an hour later had another apneic spell. I am writing all of this in hopes that a doctor, nurse or family come across this and have had something similar happen to a child they know. I am desperate for some answers at this point. We are still awaiting metabolic results but have ruled out most everything so far. He has bad periodic breathing as well as apneic spells. We cannot find the cause or the cure. As of now he is unsafe to discharge and go home.
If you can contribute to Rivers go fund me, it is “River James Medical Fund” on Go Fund Me. I appreciate all help as I navigate being a single first-time mom with a baby that only knows the hospital.
https://www.gofundme.com/f/river-james-medical-help
To get ahold of me please email riverjames1122@gmail.com
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