So we had a very big and largely successful weekend. We experimented with using the tube only at night, and I cut that feed by 20%. I just wanted to know how Gracie would respond if she was actually given the opportunity to feel hungry. She was definitely interested in food all day, but she grazed on Saturday and only took in a total of 150ml and 2 TBSP of food that day. We ran the pump at night and tried to stick to more of a schedule on Sunday to see if she would eat more at one sitting. We had about the same results. The great news is that she now takes no less than 20 ml when offered a bottle, and often takes 50ml. Her interest and stamina have increased, but she still fatigues and ate about 250 ml less per day than normal over the weekend. Not surprisingly, she lost a bit of weight. We went to the GI doc yesterday and she was at 13 lb 13oz (down from 14lb 5oz). Now this is due to about a week of experimenting and taking out the fortification. So they want us to try the following plan to try to increase her day time bolus feeds and wean her off of needing a continuous night feed:
41ml/hour for 9 hours at night
90ml Bolus feeds 4 times/day
I am to offer her the bottle, and then put the rest through the tube. Now, this is fine, but it's what I had been doing on my own before all of these trials. I just thought/hoped that they would have a clear, step-by-step process to weaning and they don't. I am not super impressed. But at least they are open to listening to my ideas and trying things. I just thought that they would be guiding us, not vice versa. I still have the web coaching card in my back pocket, but I am still not sure if Gracie is anatomically totally ready to lose the tube. Our OT reminded me this morning that she is only 7 months old, and that we have come a long way in just two weeks. Deep breath.....
So I met another mom in the waiting room at the GI doc yesterday. She has a 15 month old who has no tube in but is currently on "probation". They were in for a weight check as well. Like a girl needs to start out life with a weight/feeding issue as it is, then they use terms like "probation"! AHG! But I digress....I asked her how they got off the tube and she said, "uuuuughghghghhghgh......" before launching into an all too familiar story of trials and errors, tubes getting pulled out and barfed up ("oh yes, that happened to us the other week!")...we exchanged emails so maybe we can support each other through this a bit. Unfortunately, we live way down in Casa Grande (CG) so it will most likely be an online friendship, but I'll take it! Having a child with special needs can be very isolating so it was nice (and awful) to know that we really are not alone.
On a positive note, the weather has been beautiful so Gracie and I have been outside every day for walks, sometimes with friends. It makes a huge difference to get out like that! Today I plan to relax and let Gracie CHILL OUT and catch up from her big weekend. She is happy as can be- maybe the grown-ups should take a lesson from her!