Apparently, my "smart phone" is too smart for me, and receives voice mails without telling me. Embarrassing enough, I received an email from the GI specialist, last night, informing me that the scheduler called me at 10:30 to schedule a last minute appointment at 10 a.m. or 2 p.m. the next day. I wrote her back and took the 10 a.m., also leaving a voicemail message with the scheduler taking that 10 a.m. appointment. Today, racing to get us out the door by 9:30, I made time to call the scheduler to confirm that we have that time slot, and she informed me that she called me Wednesday for the Thursday appointment at 10 a.m. Today is Friday.
To quote a one-word response my Dad and I use often, "WHATEVER!"
So, I don't understand my phone. So what? Don't call me. I hate the phone. Email, now ... now, that I can handle! HA!
So we raced up to OHSU today to see the GI specialist whom our pediatrician reached out to Monday to squeeze us in. She made the time, having met Andi pre-G-Tube #2. I informed her we were trying the Blenderized Diet, official day #1. Essentially, she said that the food in the B.D. is thicker, and thus, it's harder for Andi to puke it up... she also said that if we feel that not having Omeprozole (Prilosec) was an issue, to restart it. I'm giving that time. Last night, I slept like a baby, as Andi didn't cough or have an issues through the night. I was stoked. Daddy Bean remembered last night differently, but, honestly, I've been living a life of light sleeping since pregnancy, I think I would wake if she fussed at all, like I have every single night. So... we're watching her closely through the weekend. The GI specialist, however, said to do the B.D. and reweigh in two weeks -- at our pediatrician's office.
Today, up at OHSU, Andi weighed 16 lbs, 12.1 oz's -- which is a full four oz's above where she was on Monday. Usually, she weighs less at OHSU than she does at the pediatricians office.
We also got a face-to-face meeting with our favoritest dietitian, Audrey. We went over a spreadsheet about B.D. I found online and made my own. She answered a bunch of questions I had about Andi and her needs, including full fat options and water requirements. It was extremely informative and inspiring. Audrey got to see Andi stick her finger in her nose, ...and walk. Her lastest achievement that I have yet to get on video.
Today is day one of the full recipes of B.D. So far, I'm getting really into it. I know once I get into a routine, it will be rather easy.
For her morning feeds, a recipe looked like this:
2 oz chicken (94 cal)
1/2 apple (32 cal)
1/2 banana (96 cal)
1/2 oatmeal - uncooked (150)
2 TB olive oil (240)
1 cup water
= 612 calories
we estimate it made 350 ml.
612/350 = 1.7 calories per ml
Her afternoon/evening feeds recipe looked like this:
2 oz beef (130)
1/2 c carrot (35)
1/2 c broccoli (22)
2 TB olive oil (240)
1/2 t salt
1/2 c brown rice (108)
1/2 c whole milk (75)
1 cup water
= 610 calories
vol = 525
610/525 = 1.16 cal/per ml
However, on dinner, I had to add more water to thin it out more so. So, it ended up less calories than that. The bad news is I pushed too hard around 2 p.m., trying to "catch up" from being off schedule and she puked A LOT!!! However, if I space out her meals to 60ml - 80 ml per hour or every hour+... she's keeping it down. I watch her stomach expand as I plunge the 60ml into her belly. A couple of tweaks, and I think we can get more bang for our buck. Or more calories per feed.
Also, plunging in manual, we've gone from her being kept in her highchair for a 45 minute feed, plus 'rest' time of however long she'll tolerate it....to a 60ml feed of maybe five minutes. So, we're minimizing her downtime spent feeding. Although, when she's done feeding, I put her into one of her upright contraptions that keep her off her back.
Anyone interesting in further pursuing the B.D., let me know and I'll email you the spreadsheet. Information is power. This hasn't yet been deemed the answer, but Audrey said some of her kids truly thrive on B.D. and some don't. She also said that if Andi wasn't tolerating it, we'd know rather quickly. Today's milk was the one thing I worried about, and so far... it has been a non-issue. I guessed mixed into a nutritionally full blend... it's less likely to cause a problem, but still, we are trying to be tolerance cautious. So based on what we've seen so far, she's doing really well. Just need to make sure she's getting her full caloric needs for the day (800-900)...although, the more she keeps down, the further along we are already!
Keeping hope alive that we're facing a change of luck!!!
*please, please, please!*