“Thank you to the generous people & The RMH who continue to help make this happen. I get to be right around the corner from my baby boy instead of living in the NICU or commuting 3 hours a day. My husband & I are forever grateful to all the staff, volunteers, & the other families here for the moral support. #worklungs #chdawareness #birthdefectawareness #TeamRiley”
The Winter Family is currently staying at RMHC while Baby Riley fights to grow strong & healthy enough to undergo open heart surgery. After over a month in the NICU, his parents are openly sharing their story to inspire others, and to spread the word about Congenital Heart Defects & VACTERL Association (Issues associated with the heart, limbs, & vertebrae).
Mom Vanessa shares below, giving the world a bit of a glance into what this family is having to deal with on a daily basis: “One of mine & Wesley’s biggest concerns was since Riley got switched back to the stronger ventilator, we felt Riley was taking steps back. We honestly felt their was no improvement & that we were back to square one. Cultures came back & he does not have any infection which is good. Since Riley is a premature baby, has a heart condition, & curvature of the spine; it has a big part to do of him needing assistance to breathe. (Which he can breathe on his own he just needs the extra help.) The ventilator he is on is helping get the secretions (fluid/mucus) out of his lungs. The goal regarding this ventilator is for the settings to be lower where Riley won’t need the tube they will switch to a mask. It is whenever his lungs are ready & more improvement is shown where they feel comfortable to do it. The overall goal is once his lungs are doing better, then to be off the ventilator completely. Once that happens then the next step is making plans for Riley’s heart surgery. Riley’s doctor reassured us today that Riley is not taking any steps back but is making small steps in the right direction of treating his lungs. It’s just a day by day process that the medical staff is figuring out as well because Riley’s health is very complex. They are continuing him on antibiotics just to play things safely. He is also still on medication regarding the blood clot in his artery. They are remaining confident that the medication will treat it. Also our chunky little man was able to continue with his feeds, & his stomach is handling it well! The biggest thing I want to express to you all & this is what the doctor & nurse told me. “Riley is doing ok today but you have to remind others you know that he is a very sick baby & is requiring constant care because his condition is critical. His health right now is so complex that we are trying to figure out the best options of treating him. His health is constantly changing & we are focused on getting him stable with his lungs that way we can talk about getting the cardiac surgery scheduled. We have to get his lungs better because there is no way of risking Riley’s life with surgery because his lungs at the moment would not uphold during a big surgery like this.” All of this is literally a day by day process & it’s so overwhelming, stressful, & frustrating. (Right along with tons of other emotions.) Wesley & I have to remind ourselves at times that with how badly we want Riley off the ventilator, his body just needs the assistance because he is a very sick baby with other health conditions. At this point we just have to be patient & positive that his lungs will get to be where they need to be at when Riley is ready. We just want our son to be ok. So today was a better day with our little man & we are just so relieved because we needed a good day for all 3 of us. The last 4 days was just so scary for Wesley & I because it’s so heartbreaking to see your baby struggling & fighting for his life. Be grateful for your kids that are healthy & that you as a parent never have to go through anything similar to what we are going through. Be blessed that you have your child(ren) home. Also don’t take for granted the moments you get to hold, hug, & kiss them. Wesley & I only got to hold our son one time & would give anything to experience what other parents tend to take for granted. I know our journey is going to be a long one, but what keeps us motivated is looking at the further picture of when the time finally comes for discharge, we will get to have that constant bond 24/7 with Riley. Until that day comes, please continue to #PrayforRiley for strength & healing; but to also help restore my belief & faith that things will get better.”
Families like the Winter’s are faced with the unimaginable, and are forced to cope with the stress & burden’s of having a critically ill child in the hospital. Thanks to RMHC, this family is able to stay together during the most difficult moments, and are able to remain right by Riley’s side as he fights to get healthy.
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