A Disappointing Setback

If you have been following her story, then you know eating was not Elodie's strong point in the NICU. We were so proud of her when she started to figure things out and eventually came home eating well from her bottle. When she had a feeding evaluation in early October, the therapist warned me that up until about 3 months of age, eating is mostly a reflex. After that it becomes a bit more within our conscious control.  This definitely seemed true as her eating started to deteriorate around Thanksgiving. After we started reflux meds, things seemed a bit better. At her 4 month appointment we decreased her caloric intake which likely thinned out her milk a bit. Then around Christmas things really deteriorated again. I became a ball of stress. The pediatrician recommended another feeding evaluation, so I took her in last week and the team that saw her recommended a swallow study due to some observed choking and coughing. Tuesday of this week we brought her in for the swallow study and it went about as bad as it could go. Despite making liquid as thick as they could, Elodie aspirated food into her lungs each time. All of the sudden we found ourselves admitted into the hospital so they could place a NG tube again. Ugh, I hate that ugly thing!! This time they taught Brian and I how to remove and replace the tube, and how to use the pump for feedings, and then discharged her home. Elodie has been deemed "unsafe" for oral feeding at this time, and for the foreseeable future. An NG tube is not really the best or safest option for the long term, so we will be scheduling another surgery for her to have a g-tube placed directly into her stomach. We will also be set up with a feeding therapist through Children's Hospital and one in home through our current Early Intervention services. The team who evaluated her feels that she has a good prognosis, and with therapy, we will hopefully be able to wean her back to oral feeding in the future. For now, I'm feeling a little heartbroken for our sweet little girl, and a tad bit overwhelmed with learning a whole new routine with her. After almost 5 months we were finally getting into our groove!