Lilee-Anne Firestone-Maitrejean

February 2019

This is Lilee-Anne, born on December 27th, 2018. She’s barely a month old. Our baby was born without the ability to swallow/suck and also without a gag reflex so she eats nothing by mouth. We have to suction her nose and mouth quite frequently because she can’t handle her secretions so she has a high risk of choking and having her secretions go into her lungs. She was born in the hospital in Grants Pass where we spent a week and she had a feeding tube placed into her nose to feed her. From Grants Pass we were transferred to Medford in the NICU where we also stayed a week. They did multiple tests trying to find a reason why Lilee-Anne doesn’t have the instincts she needs to safely eat and could not find a reason, so they sent us up here to Portland. In the midst of all of this, our car broke down. Luckily I had my Mom to rely on for rides to the hospitals. Once in Portland they did more tests and still could not find the cause. So it was discussed and we decided the best thing for her would be to have the Gtube surgery to place a feeding tube straight into her belly. She had that surgery on January 23rd, 2019. She is currently on a continuous feed of mostly condensed formula and very little breast milk as I (mom) am unable to produce anywhere near the amount of milk needed to feed her. We (dad and I) now are learning how to do the tube feedings and use all the medical equipment we need to be able to take her home to Williams, Oregon. We live in a small RV with a wood stove, so before we can return home we have to remove the woodstove, put in an electric heater, making sure there is a safe amount of space for her and all of her equipment amongst all her other things. We do not know if her gag reflex will ever kick in or if she will ever learn to suck or swallow. We are hopeful that with a lot of love and support she will maybe grow into those reflexes. We will never give up.