You may have noticed that a couple weeks back I posted an album called “Aubrey’s Backpack.” I’ve been wanting to explain that ever since, but am just making it back for some more extended blogging time. Many of you may remember that up until this point in time, Aubrey was getting all the formula that she needed overnight, pumped into her tummy at a slow, steady rate. This was because her stomach didn’t seem to be able to handle large volumes without her getting sick. This past month our feeding therapist recommended that we give day time feedings a try. The idea is that it would be better for her stomach to get used to larger volumes of food (if she can handle it) and for her body to be on a normal “hunger satiation schedule.” Which just means getting used to having 3 bigger meals a day instead of the steady overnight drip. We hope that doing this will actually help her oral eating, which has been about the same for the last several months, take off more, as her stomach will hopefully become used to accommodating larger volumes and she will have the time between meals and at night to experience more intense hunger than she probably felt before.
We were pretty worried when we made the switch, because we tried this once before and Aubrey could only take around 5-6 ounces without getting so sick that she would lay down on the floor and cry and sometimes even fall asleep. They guessed at that point that she was probably struggling with “Dumping Syndrome” which is where the stomach dumps the food too fast into the intestines and the intestines can’t handle it. This causes stomach pain and intense exhaustion; thus the abrupt falling asleep that would sometimes occur. We were also worried about the logistics of the backpack – would she pull on it?, would the tubing irritate her g-tube site as it moved around when she was playing?, would the pump work properly when she was on the move?, etc. However, things have gone surprisingly well. She can still only handle 6 ounces at a time, but she doesn’t get nearly as sick as she used to. We are hoping we can slowly stretch out her stomach to handle more so she only has to have 3 feedings a day instead of the 4 she needs now. And using the backpack has it’s challenges (we have to keep her upright, even at the end when she is getting tired and her stomach sometimes hurts) but for the most part it is working out good. And we can use it pretty easily on the go (check out the Como Zoo pics to see!).
So far, this new feeding schedule has not made her eating pick up much, but I’m trying to be patient. And it sounds like we will need to be patient for a LONG time. I get asked a lot how long it will be until Aubrey can be g-tube free. I ask myself the same question all the time. The answer is that I have no idea, the doctors have no idea, the feeding therapist has no idea, we just don’t know. It’s all up to Aubrey. Whenever she decides to start eating enough. Or drinking enough, since she could potentially get most of her calories through liquids. But “enough” is much more than she is currently eating. So we just keep trying to be patient.
Last week I was on the phone with someone from Anoka County’s early childhood intervention program. They are pretty familiar with our family there, as we used to get both physical therapy and home health nurse visits through the county. The nurse was talking about some other families she works with whose kids are on g-tubes and she talked about how painfully slow the process can be as we wait and wait for these kids to start eating. Then, in an attempt to encourage me, she told me that one of the other kids she works with is now eating at the table and almost g-tube free and it happened literally overnight. ”Great!” I said. ”How old is she?” ”Five” said the home health nurse. FIVE??!!!
To be honest, this information sent me into a bit of an emotional tailspin as I thought about 3 more years of this. Meals a constant struggle. Hours spent on feedings. Difficulty going out because of Aubrey’s eating schedule and the supplies needed to feed her. Stress, stress, stress surrounding the topic of food for me. Constant explanations to friends and even strangers. Surprised looks when we go out and someone catches a glance of the g-tube, like at the wading pool this morning. And the ongoing lack of normalcy/feeling of unsettledness that characterizes this kind of life.
I’m feeling better now; I seem to have these obligitory breakdowns every couple of months (just ask Jason!) and then I get over it and figure out how to move on with the life we have. But sometimes I struggle with how life is so much about learning to be patient these days – patient with Aubrey’s eating, patient with two toddlers, patient with never getting my to-do list done, patient, patient, patient. It’s funny how I thought of myself as a rather patient person before, but am finding out that I have a lot of work in this area!
The thing is, as Jason said the other day, “our life is pretty cush.” Really. In so many other ways life is so good. And even the hard things could be so much harder if we were in a different situation. We have the finances, resources, and medical and community support needed to help us help Aubrey. Lots of people wouldn’t. I often think of what would have happened to Aubrey if we would have maybe lived in a poorer country or lacked access to medical care. When she stopped eating she would have starved herself to death and died. Simple as that. And so I am thankful. And grateful. And hopeful. And striving for peace and contentment. And, in case you didn’t catch it before, trying ever so hard to be patient.
In a couple of hours I’ll be packed up and off to visit our good friends Dave and Arkay in Ankeny. Frank and I will be spending the night with them tonight before we start the MS Bike 150 early Saturday morning. It will be great to having an extended visit with Dave and Arkay since I usually only see them about once year for a few hours over New Years Eve.
