So, more about how things have been going lately. Mother's Day weekend was wonderful in many ways. Saturday we continued a tradition we began last year. We bought flowers for our front porch. Then we came home and put Charlotte down for a nap while we planted them and spent some time outside together. Saturday evening we cooked some amazing shrimp and just enjoyed eachother's company. Sunday, we went to church and then to brunch with Chris' family to celebrate. That afternoon, Charlotte ended up skipping out on most of her nap (she did surprisingly well), however, she did find time to snuggle with Daddy and Mommy for a quick snooze. Overall, the weekend was wonderful.
The not so wonderful news is that her eating has gone from bad to worse... We have been using the tube for feedings much more right now, and she basically won't let any food come in her mouth without pushing it away, gagging, or even worse, vomiting. We aren't getting enough table food in her to feed a mouse. What we are thankful for is the tube. If we didn't have it, I hate to see where we would be today. At least it is helping us sustain her, but the problem is that that appears to be all we are doing. Charlotte hasn't been able to tolerate the amount of food that she needs. She seems to be very uncomfortable if we use the tube more than 1-2 times per day. And we are only feeding her in the tube what she doesn't finish of her bottles. It can be absolutely maddening at times, believing she isn't doing this without reason, but wanting her to eat so badly. The amount of frustration that we feel and she must feel is undescribeable. It has gotten to the point that she begins crying when we put her in her highchair.
So... on Saturday, we called the GI Dr. again, pleading for help. Tomorrow, Charlotte is having another "study" done of her stomach at Children's Hospital. Previously, when they did studies, she was doing "ok", and right now we are definitely in a funk and not "ok". So, we felt now is the time to investigate. She is having a G-tube study, where they put barrium in the g-tube and watch for reflux, gastric emptying and also look at her bowels under x-ray. We are hoping to learn anything to help her or determine why she struggles so much and why eating is anything but enjoyable for her. We should know results tomorrow and I will post tomorrow to let everyone know how it goes.
I leave you with pictures from the past few days...after reading all of that, you will probably find yourself wondering how she still finds a way to smile so big. We are loving her with all we have, but even I fear that isn't enough. The past few weeks she seems to be even more frustrated and crabby. Is she just developing into the terrible 2's?? Who knows. I wonder if it is just that or if she is truly unhappy. I just want her to feel good all of the time... I have said this before, but she deserves at least that.
Charlotte's first pig tails. I wish she would leave them in...
Charlotte fell asleep after she drank some of her bottle. I just sat there and enjoyed holding her.
I want to give her some rolls herself... check out what her shirt says.
Smiling for the camera.
We'll update you tomorrow...