Rylan's condition by definition is a "Giant Omphalocele": An omphalocele is a birth defect in which an infant's intestine or other abdominal organs are outside of the body because of a hole in the belly button (navel) area. The intestines are covered only by a thin layer of tissue and can be easily seen.
Rylan's surgeon has started with a treatment series called "paint and wait" where they treat the sac with silvadene cream. They do this every day, along with changing the layers of gauze and lastly a layer of plastic (keeping it moist while healing). This has to be done every day. This process is very uncomfortable for Rylan and we are hoping over time, she will get used to it. It will start to dry out, toughen the skin and shrink slowly. They will then add a layer of compression to slowly push the sac back into the stomach as much as possible attempting to make room in the abdominal cavity preparing for a full surgical repair (closure) sometime in the next 1-2 years depending on how well Rylan responds. Rylan also requires a feeding tube to supplement the milk that Erin is giving her to make sure she is gaining the proper weight and keeping her strength up. During this time she cannot turn over or be on her belly - she has to be on her back until the omphalocele is surgically repaired. This could be the case for the next year or two.
This condition has requires Rylan to remain in the NICU until her surgeon says she can go home. Momma Erin is at the NICU everyday from morning until night caring for her baby and providing as much mothering comfort and nutrient rich breast milk as the doctors will allow. This has turned into a full time job between feedings there and pumping nights at home - this will not change for some time. Once Rylan is released to go home, she will still require the feeding tube and daily changes of dressing, and silvadene "paint and wait" treatment, which will again be assigned to Momma Erin. It won't be easy, and it will be a long road. But, it has to be done.
Erin is a single mom and is handling this 100% on her own. All the responsibilities of Rylan's treatment fall on Erin, which makes it hard if not impossible to return to work full time. Erin, a Dressage Horse Trainer by trade for the last 20 years, loves her work, but as all momma's know: nothing compares to our babies, especially when they have special needs. She has done her best to do everything she can to stay calm and take every day as it comes. This condition is rare (1 in 5000 babies are born with it). There is no standard course of treatment, it is a waiting game of seeing how everything responds, if there are any other issues, and waiting to see when the next procedure will be and when the actual repair will take place. My heart goes out to her for handling this so well. The uncertainty has got to be rough.
It's been very stressful to say the least and if you know Erin, you know she is keeping a smile on her face and handling it quietly. I have convinced her to let me set this up in hopes that it will relieve some of the stress of feeling like she will drown in medical bills and living expenses. Life in general is tough when everything is going fine. Just imagine how it feels when it's not, and you are thrown a curve ball of this magnitude? I know she feels overwhelmed and I would love for everyone who wants to help, to have a platform to be able to reach out. Even if you cannot donate, at least leave some encouraging words or uplifting messages. I want her and baby Rylan to know that they are not alone and we all love them. I am hoping if we all pull together, we can cover a few months of medical expenses at the least. This will allow her to take a deep breath and focus on her new baby. Life shouldn't be this hard, and I know we all have challenging times. This is when we need our friends and family.
She has a strong village of us helping putting in time at the hospital, learning to change Rylan's dressing, holding Erin’s hand through all of this, but anything extra would be greatly appreciated. Honestly, anything and everything helps.
Thank you from the bottom of our hearts. Erin and Rylan appreciate all your prayers, love, visits to the NICU, gifts. It's all so thoughtful and puts a smile a momma who really needs it.
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