Well Maggie has been screaming pretty much any time she is awake the past few days. I know she is teething, but is it something else, too? It is hard to know. The GI ordered another test that puts barium into her tube and sees where it goes, to find out if there any kind of blockage or something else. That's on Tuesday and our GI appointment is on Wednesday.
As for her feeding, she did great on the pedialyte for 48 hours. Yesterday we started a new elemental formula at 15 ml (or half an ounce) an hour through her feeding pump. I slowly worked her up to 25 ml an hour by eight pm and thought she was doing great. Well about two am she started vomiting and wretching again like she was doing before- the whole episode lasted about 10 minutes and was really scary. And it looked like she spit up a gallon of milk so I don't know where that left us with our daily volume count. Frustrated, I turned off the pump and decided to let her stomach rest until morning.
The thing is, Maggie needs to eating a lot more in order to gain or keep any weight. So here we are fighting to keep less than an ounce down, knowing that is not sufficient. But as someone said, "baby steps." So my plan since then has been to go back to 20 ml/hour and just go up little by little. Although this means she has to be connected to the pump 24 hrs/day in order to get as many calories in her as possible, meaning I have to carry the pump with me anytime I go out. As I was jamming the tripod-like contraption into my car this morning, holding the carrier in the other arm with Maggie screaming as I accidentally tugged on the tubing, I thought, "Haven't I been here before? Oh yes, 8 months ago when I was lugging that oxygen tank and monitor around...". It wasn't until after a couple of times getting in and out of the car, I realized it was probably easier to temporarily unhook her from the pump, rather than trying to lug everything at the same time and risk dropping it or her and then rushing to the ER because it pulled her button out. Duh!
But there has been some good news, and I need to always include that because prayers are being answered and I want everyone to know. First, Maggie got accepted into Scottish Rite as a patient for her neck! We go in two weeks and I couldn't be more excited to have the best ortho docs come up with a plan for her. Second, Maggie has been saying "Bye Bye Bye" and "Da da da" which is so great because that's what a typical nine month old would be doing verbally. And she's getting her first tooth! These little things mean so much to us - anytime she does anything "normal" we have reason to celebrate!
Anyways, thanks for all the encouragement over the past few difficult days. I read my emails and blog comments this morning after I woke up to find that Blue (our huge labradoodle) had thrown up five times during the night in Mary Lawrence's room. Not only that, but you know how dogs eat grass when they are sick? Well, since Blue couldn't access any grass, he just ate big chunks out of her PB Kids rug. I mean, seriously, Blue? I wanted to just go back to bed and pull the covers over my head. Instead I opened my computer to send some emails and laughed so hard at my friends who made comments to that same effect. Like, "Really, Lee, how do you get out of bed anymore?" I had a good laugh at the ridiculousness of it all, too, And I am so glad that people can be honest and say, "Your like really stinks right now"! It's true. There is no sugar coating it.
I say all of the time, but it's only by the grace of God that we are able to laugh amidst our circumstances. Without His strength, I promise I would not get out of bed in the morning!