Ahhh Nutritionists...

This post ended up SO long! And no picture rewards! I better go take some and add them!

So Dylan and I went up to the Neonatal follow-up clinic again. It was specifically to follow-up with the Audiologist and the Speech Pathologist. In neither area did anything eventful happen in the last three months... but whatever. So, I figured while we were there maybe I could talk to the Nutritionist (remind me that I asked to talk to this person later mkay?).

So we finally get in to see the Nutritionist and she jots down Dylan's daily food intake and is completely shocked. She says... "I am amazed that she is gaining weight on this few of calories!" And then goes on and on about how she is not getting enough to eat. She is SHOCKED! And trying to find ways to get in extra calories, brainstorming... talking about an extra feeding, but in the meantime is booting up her PC to see just how many calories Dylan's food adds up to. She can't believe how little she is getting!

So she plugs in everything that I told her and the computer program works it's magic and spits out the number of calories... about 548. Which, for someone Dylan's size (15 lbs 6.5 oz today might I add!) is the PERFECT amount of calories. Well. Then.

So she continues... and this is where I kind of get a little annoyed, "...about this extra feeding that we need to have Dylan start taking in, how can we do this?" I told her I could maybe start feeding her more frequently to get more in and she said "I am just trying to avoid an overnight feeding." What? She's thinking about putting Dylan back on the pump overnight? Wait... and she's getting the amount of calories she should be? (Insert puzzled look here.) Smile and nod, smile and nod.

So her recomendation was to give Dylan a 10-10:30 PM feeding of a Ped formula that's 30 calories an ounce, so... let's do the math... an extra 180 calories a day! An extra 25% of her recommmended calorie intake! Really? Okay granted, it seems as if she's not getting enough fluid, because we are upping the calories in the milk with formula and giving her whole milk and stuff, but that would mean extra water, not extra super power formula that packs in the calories right? On top of that, it could effect her morning feeding...

So MY recommendation is to give Dylan and ounce or two of the high calorie stuff with an ounce or two of water, giving her only an extra 60 calories a day and some extra fluid (that might help her poo...). Matthew was laughing at me as I was talking to him on the way home "So basically, you asked to talk to her and now you're not listening to a word she said?" Oh no... I told him, I listened to every word she said, I am just making my OWN recommendation. Being a mom as it were. Ha! He totally agreed though! Makes perfect sense... crazy food lady.

Back to why I wanted to talk to her in the first place, I wanted to find out if she needed a toddler formula (no, because she's still the *size* of an infant) and see if we could cut down on her Iron for the poo factor (yes, we can give her half). So I got my answers, some bonus info, and I am making a now educated decision on her food. Bwah!

The Audiologist tried the booth again and Dylan was so cute... when she would talk Dylan's eyebrows would go up and she would smile and make a kissy face and noise. She doesn't cooperate by looking, but she could definately hear the woman talking. When the woman came back in she said "Was it just me or was she smiling when I was talking to her?" Nope, wasn't just you, she was being cutesy... and that was at a normal speaking tone. She still wants Dylan to go in and do a sedated test at Primary but she did get a little more information. Apparently in her NICU forms there was nothing about a hearing test, even though it's required, so she actually called. Not only did Dylan pass the normal NICU hearing test, she also passed this sedated one that she wants her to have! We should still repeat it though, I asked a few more questions this time and apparently she can pass the initial one and still have some mild hearing problems so even though she passes in the right... ... Anyway, I am now on board, I just would like an all clear there so it's not effecting her speech.

In the last couple of days I joined an online Holoprosencephaly group, Yahoo groups totally stink and it's hard to read back but I have been looking at people's questions an answers as they come in. I had joined the same group back when Dylan was in the NICU and freaked right out... so I wasn't active but now Dylan's just so super-awesome it wouldn't be fair if I didn't share how cool she is with the other new mom's who, like I did, are getting the diagnosis, finding the group and freaking out! There's also resources like The Carter Center who you can have read and confirm or change the diagnosis for your child, they have more experience specific to HPE and there's no charge (they do a lot of research). I am interested in this because the way they described her brain indicated a more severe form of HPE than they labeled her with, so let's have the specialists read it right? Information is power!

I found another mom's blog who has 8 month old girl twins, one with HPE (It's over there on the right now, as Carly and Jay). and on her blog she had the following information (which she also found on another mom's blog... I love blogs). It basically consolidates a lot of the statistics I, and probably a lot of you, found when Dylan was first diagnosed, but it puts them in an amazing order...

Holoprosencephaly occurs about 1 in 20,000 out of every birth. (0.00005)
1 in 200 make it through full-term pregnancy alive. (0.005)
Less than 2% of those survive through the trauma of birth to their first breath. (0.02)
Less than 1% of those that survive come out without health complications, which will allow them to live during their short hospital stay. (0.01)
Total odds = (0.0000000005) or a 1 : 20,000,000,000 chance.
The chances of another amazing little Dylan person are less than the chances of winning the lottery! More proof that she is special and made JUST for us! I will share her with you too!