At this moment, having just shot Reide's Prevacid into her little sleeping body, I am overcome with joy, happiness, peace, humility, thankfulness, pride and praise! I am so lucky to be Reide's mom. I found a little "dustable" (as my sister would call it) when I was Christmas shopping a few weeks ago and decided to keep it for myself. It reads, "Being a mother is a holy privilege."; I couldn't agree more. It is truly my privilege to be Reide's mother. I am so proud of her right now! I am so proud that she's such a strong, little girl who is going out on a limb and trusting food. She is trusting us and we are trusting that she will eat and drink what she needs. I made one batch of her blenderized diet tonight and it will last all week, easily, as opposed to two batches lasting three days like it used to be....before she became an eating machine! No really, there are times during the day that she eats like crazy, then other "meals" that she tells me "DOWN" within minutes of getting into the chair. I guess we're both still learning this "eating baby" thing. I've actually not tube fed her in over 10 days.....Brock feeds her the only tube feed she receives, at 10pm each night. We've also stopped all supplemental Pedialyte at naps and bedtime. So, with one small exception, Reide is doing this all on her own! My brave, beautiful baby! I cannot imagine, honestly, how foreign this all is to her. Until ten days ago, Reide had not truly eaten anything by her mouth for more than 1/2 her life and now she's more than sustaining herself. In fact, I weighed her today and she's GAINED 7oz in 4 days! GO BABY GO! Wow! SO stunned by how far she's come so very quickly!
So everyones question it seems is, "When will you take the tube out?" And that's quickly followed by, "Oh wait, what do you do when it's time?" When it's time, we merely deflate the internal balloon on the tube, just as we do every three months when we switch her tube out and we pull it out and put a bandaid over the hole. Within four hours, the internal tract (between her outer skin and the inside of her stomach) will close. I know, WOW, four hours???? Yes, I guess it's God's way of saying, "Hey, that ain't right." We figure we'll have to do it at night before bed because otherwise her stomach juices will pour freely out of it and anything she eats or drinks would come right out. So, then the harder question to answer, WHEN will we pull the tube? When Reide's weight is on a consistent upward trend, we'll gradually stop her only tube feed, then if she continues gaining, we'll wean her off the appetite stimulant and by that time, we'll have likely seen what she'll do with a stomach virus or two and a serious cold or two. If through sickness and health, good times and bad, better and worse, she continues to eat and drink enough to sustain/gain, we'll pull the tube. Brock and I have talked and feel no pressure to pull the tube by any timeframe. We'll pull it when it's right for us and most importantly, right for Reide. Afterall, she's the one who underwent not one, but two back-to-back surgeries to have it put in and it's up to us to make sure she's ready when we pull it. But trust me.....ohhhh trust me....it will be a glorious day, THE MOST GLORIOUS DAY, the day we pull it. Just knowing that is now a possibility is such an awesome thought!
Happy New Year Everyone! It's gonna be an unbelievable year for the Oakes', as we watch our Peanut do the impossible! We are SO overcome with happiness about the possibilities that await us now!
Wow....so happy to hear the good report. Yeah Reide!!!! Sounds like precious Reide is doing amazing with her eating. I'm so happy you guys had the strength to help her with the transition. I'm sure there will still be some "eating" challenges in the future but it sounds like she is making tremendous progress. Keep up the great work (all of you)!!!! Thanks for keeping us updated.
ReplyDeleteJodi Berndt
http://alliesabnormalappetite.blogspot.com/