Little Miss Shelby

My sweet baby girl was born via emergency cesarean July 18th. She weighed only 4 lb 10 oz at 37 weeks gestation - she had stopped growing at 33 weeks. Her initial prognosis was very grim and is now considered guarded. We spent 5 weeks in the neonatal ICU with her on increased ventilation due to respiratory failure before being transferred to the pediatric ICU. The ENT surgeon performed a tracheostomy that initially went well. A few hours later Shelby had a seizure that dislodged the trach tube in her throat and she went into cardiac arrest. They rushed her into surgery where she flat lined on the table, required CPR and had her left lung collapse. They spent four hours working on stabilizing her before bringing her back to me with an endotracheal tube(tube through her mouth), her trach incision bandaged and a chest tube in place. She spent the next four days extremely unstable, becoming bradycardic and desaturating continuously. The ENT surgeons and her PICU physician agreed she needed to go back for another trach ASAP. I agreed since I've been here 24/7 and witnessed her arrest more than a dozen times. Her third trach attempt was deemed successful although she's continued having desaturation episodes and bradying. A few days post op her pressures were peaking and her trach looked abnormal. It turns out the trach was eroding her soft tissue in her trachea and forcing air into the main branch her left lung. Again, she had her entire team come in and this time they had a less eventful trach change. According to the neurologist Shelby has an immature brain stem. Her initial brain scans and MRIs as a newborn weren't very promising but her brain has shown improvement. We still don't know how much support she's going to need, everything is day by day. Some day we'll leave the ICU but that won't be any time soon. She's still maxed out on most of her respiratory support and requiring sedation, we're living day by day. In the meantime bills are stacking up, rent and childcare payments for my other daughter are past due. Any support, share and prayers are greatly appreciated! ❤

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Sadie Elizabeth 
Milpitas, CA

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