Hooray!!! Day 5 was the day Reide really started swallowing some food. At the park, she reached her hand into the Yogurt Melts bag and pulled one out. I looked away for a second then looked back and asked my friend, where did that Yogurt Melt go? She said, "I don't know, it's not on the ground." Then I looked at Reide who had drool pouring from her mouth and low and behold she had the whole thing in her mouth and ate (swallowed) the whole thing! That was pretty much the start of some really positive changes. Reide's daddy was home with her on Wednesday while I went to work. He tried some vegetable beef soup with her and she loved it! Instead of the play by play, the overall summary is that Reide has been in her highchair eating 7 times a day for days 5 and 6 and already today (Day 7) she has been in her highchair 4 times....and it's only 10:08am. She's routinely doing well with mac-n-cheese, vegetable beef soup, chicken noodle soup, pickles, yogurt melts, puffs, green beans and most Gerber Graduate meals. She's not eating nearly enough and drinking (only water at this point) even less but it's a start. Never did I think we'd be where we are this morning. When I weighed her yesterday, on Day 6, she'd lost another 4 ounces bringing her total to 9 ounces lost since starting the wean. That's really not too bad, considering. We've somewhat developed a successful pattern of spoonfeeding her soup, or whatever the spoon-fed item is at that particular time then letting her finger-feed herself other foods after that. We are still feeding Reide 6oz of her blenderized diet through her g-tube at 10pm and doing about 8oz of Pedialyte every 24 hours, and all her meds are going through her tube still.
For us, as Reide's mom and dad who have worried constantly about this process for some time now, it's almost surreal to see our little girl willingly take bites from us and then in-turn finger feed herself. We sit and watch in a stunned silence as the other feeds her or as she feeds herself. We laugh a nervous laugh when she finishes the serving we've prepared for her and the "mental gymnastics" have certainly not stopped. But it's a new kind of "mental gymnastics". Instead of planning our next 4 hours based on her tube feed, we're organizing the refrigerator and double checking the pantry to be sure we've got enough choices on-hand. We are still bound to the clock for meds, sneaking pedialyte in while she's napping and notating amount of time spent in the highchair and how long since her last "meal". But we're definitely getting a glimpse into how much simpler life is with an orally eating baby. The last few evenings haven't been spent washing tons of extension sets, syringes, feed bottles and bolus sets but instead, loading the sippy cups and baby bowls and baby plates into the dishwasher. The clock is still our guide at night: 8pm - 3oz pedialyte, 9pm - Prevacid, 10pm - 6oz feed; but I cannot imagine when Christmas is over and we're not busy with lists, wrapping, cooking, decorating, etc. what life will be like. Will we actually get to watch the Netflix movie that's been on our table since August? Or maybe I'll even get to scrapbook?! The possibilities are endless!!
I realize what a long road Reide still has before her. Luckily, patience is something we've been taught over the last year. There are still a lot of unanswered questions and too many unknowns but they are questions that only Reide can answer and unknowns that only she will reveal as time goes on. Unfortunately, I have this uneasy feeling that all of this is a "fluke"and I'm almost waiting for the "one step back" that has so often followed Reide's two steps forward. In the meantime, I am going to try not to overthink it and instead, rejoice in the progress that she has made in only a weeks time. I can't help but wonder what the next week will hold.....
Last Christmas Eve was so very different. I was a new mom to a nearly two-month old little girl who screamed in inconsolable pain and discomfort. We felt lost and helpless and desperate in a way only parents can feel. My wonderful, patient husband and I have seen the worst of each other over the past year, but we both seem to be walking to the beat of a new drum this Christmas Eve. We are confident, resourceful and loving parents to a beautiful, happy, energetic, eating toddler. We've fought all the battles up to this point but we realize that this battle is Reide's and we are giving her all the resources she needs to win.
So, from this happy and hopeful Mommy, Merry Christmas !