Weight Check Wednesday Update!

Every Wednesday Paige and I have an appointment to see Liz the ancillary nurse at her clinic. I've been tracking Paige's progress here. You can see that some weeks were better than others and that LAST week the news was pretty bad. You might assume that looking at her weigh this week that we would be worried. ON THE CONTRARY! Let me explain:

On August 6th we reduced her overnight feeds from 3 cans (roughly 660 mls) to 2 cans (between 400 and 550 mls a night). Why? Well, we were exhausted. For 2 months we'd been waking up EVERY SINGLE NIGHT to add that 3rd can.....in addition to the 3, 4, 5, or even more times a night we were waking up to silence warning alarms on her pump.

On August 16th we removed the tube completely. Why? Where to begin....A) see the paragraph above. B) At least once a week I would pull Paige out of bed in the morning and she would immediately vomit waves of milk all over all of us. This was scary and upsetting to her, scary and upsetting to me, and wreaking havoc on the walls, bedding, and carpet. C) Tape. The child had so much tape keeping that tube from moving and leaking. One night when I checked in on Paige she was soaked from head to toe in milk/stomach contents shivering and crying. The tape sealing the tube had failed. Every day we needed to hold her down and replace a white strip of tape over her nose, sometimes several times a day while she begged us not to. Every three or four days we needed to replace the tegaderm on Paige's cheek. This is a long, upsetting process that includes smelly adhesive remover, smellier skin-prep wipes, severely irritated baby skin, and usually crying and yelling for all parties involved. I've included a charming video of PART of this experience!




D) It is very scary to wake up and find your baby in a tangle of tubes every morning. Especially after a long night of untangling her. We could never have a babysitter put her to bed, we could never have her "sleep over" at a loved ones, we could never let her sleep in, we could never just get up and start our day without, flushing tubes and dismantling pumps, replacing tape...That stupid tube was not helping her put on much weight, was a hassle and a hazard. E) Paige's insurance only covered 90% of her "durable medical equipment" We paid dearly for every bit of tape we ripped off of her face and every drop of milk she puked up. F) Her GI doctor has diagnosed her as healthy but needing a higher calorie diet.



We have decided to give her those extra calories the old fashioned way for a while. Will the tube go back in at some point? Maybe. In the mean time we are feeding her tons of food. Grandpa Blake even taught her how to do corn on the cob!

Paige is going to see an endocrinologist at the U soon. We are not really expecting the doctor to find any major problems...its more of a "no stones left un-turned" approach, especially because we are opting out of the tube feeds for now.

So...was I thrilled when my little lady only gained 1/2 an ounce this week? YES! Truth be told, she probably lost even more weight than the 8 oz from the previous week. She managed to gain those ounces back, plus 1/2 ounce more, ON HER OWN! I was hoping that she hadn't lost much more...would've been really happy if she had maintained....1/2 ounce up is a step in the right direction!

SO....I'm very behind in my blogging. I've been just enjoying hanging out with my kiddo. You'll have to excuse me when I (eventually) post pictures of Paige at a petting zoo with NO tube and later post pictures of her running in a sprinkler WITH the tube. Her cuteness will be displayed in no particular order.