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My daughter Raelynn and Hoff is in the NICU at Arkansas Children's Hospital she has a disease called ARPKD. It is a genetic disease that when two parents are carriers there's a 25% chance of a child getting it. With our first she was blessed to not have to battle with this disease but with Rae she will be fighting most of her life she had a double nephrectomy at 2 weeks old and was on hemodialysis for a long time. She had been on full feeds but then developed necrotizing colitis which they are not sure how she had got so they had to stop her feeds. She just recently got back on her feeds they also recently started her on a different form of dialysis called peritoneal dialysis that she is working her way to a certain amount of fluid going in her stomach and being pulled out which runs 24 hrs . Whenever it reaches where they would like it to be and when she is back on full feeds they will put her on a machine for the peritoneal dialysis that will be sent home with us which will only have to be done for 12 hours at night. Even once she gets all that figured out they have to do a CT scan on her throat because she's been having an on and off episode that they call clamping down where she's holding her breath without meaning to which they believe is caused by Laryngomalacia. Once they figure out if it is Laryngomalacia they will have to figure out if it will require her to have a trach in her throat which could also move her down the transplant list. We've been taking everything one day at a time it's all we can do. I travel back and forth between Little Rock and our hometown of Harrison which is a 3-hour drive whenever we have the funds for gas and everything so that I can be there for her sister cuz I don't want her to feel as if I left her. If I'm going to be brutally honest sometimes it's also for me cuz with my husband staying at home to work and be with our 1-year-old it's been rough because even though I know he's here for me emotionally physically feels different with him not actually being here.
March of Dimes fights for the health of all moms and babies. We're advocating for policies to protect them. We're working to radically improve the health care they receive. We're pioneering research to find solutions. We're empowering families with the knowledge and tools to have healthier pregnancies. By uniting communities, we're building a brighter future for us all.
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