Thursday Jan 1'st
There are just certain things in life that you have to accept. There's a fine line between battling something in hopes of changing it for the better and realizing that some things cannot be changed and thus must be accepted at face value. Whether or not Tyler needs an NG tube (or feeding tube) is the current paradox. Are we battling something that is inevitable, or will our efforts avert the challenge. We had our visit to the GI specialist on Wednesday, and the news was less than stellar, yet we still don't have the tube. On Monday both boys had lost weight. The Christmas week transition was really hard on both of them. "Try 100% of the new formula instead of a mixture of new and old and raise it back up to 27 cal. Then come back in on Wednesday...." This was the last directive. Parker is the good news. He seems to be getting back on track. We were pretty much discouraged since Parker had been gaining weight just fine. He was refluxing badly, but at least gaining weight. We changed his whole feeding regime in an attempt to control his reflux and pretty much destroyed what eating success he was having and he lost weight. Well, from Monday to Wednesday he gained two ounces!!! He finally adapted to the new formula and seems to be back on track to gaining good weight. We had hope for this since we saw his feeds increase over the two days. Tyler was another story. His feeds took a dramatic decline. Partially due to a new philosophy (or acceptance I should say) on feeding I adopted. I simply decided to stop force feeding him. Watching him literally claw at my hands and his bottle and physically writhe about trying to stop me from forcing the nipple into his mouth just became too much for me to bear every three hours. Three weeks of this and we were still not getting the results we needed. So I adopted acceptance. I accepted the fact that he would need an NG tube and began focusing on the positive attributes that would accompany the tube. It's actually really interesting to look back at the past six weeks since he's been home and the attitudes/philosophies of all the docs/specialists with regard to the tube. We currently have 8 doctors/specialists involved with the boys. Our pediatrician seems ready to go there and has been for some time. He has been great about allowing us to try different approaches in hopes of avoiding it, but is always ready to advocate for it (not in a bad way at all.....he really wants Ty to thrive and not struggle). On the contrary the feeding specialist, the dietitian and now the GI specialist all seem extremely reluctant to go there.......as we have been. For us, this changed on Monday. I simply stopped forcing the feeds and decided that his need for positive experiences would now be the focus. I let him latch on and feed until he pulled away. I'd give him a break and then spend about 15-20 minutes gently trying to coax him into taking more. No longer would I spend an additional full hour forcing the issue. Sometimes he'd take a little more, but for the most part he was done. I did this for a day and a half and sure enough saw his total volume decrease. So I spent most of Tuesday mentally preparing myself for the inevitable. We would go in on Wednesday morning, see a weight loss and accept the tube. As with every thing else, we would adapt to this new circumstance, focus on the positive aspects and move forward. The negative aspects that come along with the tube would just have to be dealt with and take a lower priority to his extreme need to gain weight. By Wednesday morning I was finally at ease with the situation and ready to move forward. He didn't lose weight. He didn't gain any, but he didn't lose any either........so what now.......well......there is no tube.....yet. The latest strategy is to up the formula once again, to 30 cal / ounce and to add in MCT oil. Yup, that's right. We are now giving Tyler oil in an attempt to get his total cals up. If his total volume is low then we will maximize the cals in that volume and see if it will put weight on him. We have two priorities to consider. First and foremost is to do whatever is necessary for the best health of Tyler. The GI still believes he is not in any danger. He is still in very good overall health. The second priority is to not go back to the constant battle and torture (for lack of a better term) of trying to force feed Tyler. It's just too taxing emotionally and we simply can't physically do it. I go back to work on Monday and Heather will not be able to spend that much time engaging in a futile battle. This new strategy allows both of these priorities to be met, while still avoiding the tube. So we go back in on Monday to see how this latest strategy has fared. So far it seems to be working okay. We'll see if he gains any weight though. The GI summed it up fairly well....."if we do need to put in the tube we can do it no problem, but at least we'll know we've tried everything else first". With three different doctor's appointments scheduled for next week (the GI specialist, the Pulmonary specialist and the Pediatrician's full physical and immunization shots) it could be a very interesting week:) Here's to hoping that 2009 brings much better developments and that our two little heroes start to thrive!!!