Snowflakes

I've been so excited to write about how well Jaela is doing. She'd been off the feeding tube and oxygen for a couple weeks and was doing really good. Or so we thought. We took her in to have a weight check and she hadn't gained any weight in two weeks. The pediatrician called later and said he'd like us to meet with a dietician. I thought it was a good idea and we could get some help figuring out things that would work to help her gain weight but still eat on her own. Well I left the dieticians office in tears. She told me I was starving my baby and preventing her brain from developing. She got mad at me for giving her oatmeal (which the pediatrician had already approved) and especially for introducing it in a bottle. She told me I couldn't even mix formula right. She said Jaela needed to be back on the feeding tube and she needed most of her food at night so she didn't really need to eat in the day. Well we've tried that. She won't eat for more than 12 hours in the day. You can't tell me that's good for her either. The dietician didn't want to listen to anything I had to say. She just wanted the tube back in, and for me to leave her office. Well Jeremy and I talked about it for a long time and this is what we decided as her parents and the people who know her best....

NO FEEDING TUBE!!!!!! She is getting the amount of calories she needs each day, on her own, without the feeding tube. It just seems like giving up to put the tube in. It would be a huge step backwards. All the hard work we've put in, Jaela's put in, and those professionals we've been working with would be a waste.

After the appointment I thought I'd write on the OI parents group page, tell them what happened, and see what they had to say. Of course they would know more about feeding an OI baby than a dietician who Googled OI and read about it on Wikipedia. Here are a few quotes:

"Your dietician appears clueless when it comes to feeding in an OI child. OI children have smaller stomachs, so by nature SMALLER appetites. A common error pediatricians, dieticians, and neonatologists/NICU staff make is overfeeding these kids. As a result, many times they develop acid reflux, decreased appetite, and need a G tube - sort of a self fulfilling prophecy. Know its ok if you daughter does not eat like typical children her age, she is NOT supposed to as long as she is taking her own nutrtion on her own time (usually smaller frequent feedings, smaller amounts, and burping after each feed)."

"You sound like you are doing a fab job. On the note of feeding, I don't know how you didn't give that dietitian a slap."

"You don't want a fat OIer, more pressure on the bones is not good. On the side of brain development, what rubbish!"

"Good luck with everything try not to take ignorant peoples opinions to heart."

This reassured our decision to leave the tube out. She seems to be doing what other OI babies do. Small amounts, frequently. I especially love what one of these parents said. We call OI kids snowflakes because each one is unique, fragile, and beautiful.

But other than the disappointing appointment with the dietician, we have a lot to be happy about!

We just celebrated our fourth anniversary in May. We have a fun tradition of taking pictures by the temple every year.

Our wedding


First Anniversary


Second Anniversary


Third Anniversary


Fourth Anniversary


I thought Jaela's face in the picture is hilarious! She's not liking the kisses from mom and dad anymore.


We also blessed our sweet baby Jaela on June 5. Jeremy gave her such a beautiful blessing. Here are some pictures that my wonderful sister-in-law Melissa took!


It's been so long since I've written on here that I have a whole bunch of fun pictures!

This is what you get when Daddy changes the stinky bum. He put the tights back on, but on the wrong end! :)


I think she liked it though. Or maybe she just liked all the attention and laughs she was getting.


Here she's talking to her Grammy on the phone.


She fits in the hood of her Daddy's hoodie :)


She seems to like wearing Daddy's sun glasses too.

And what post of mine would be complete without crazy hair pictures?








One more thing. We got a complete list of the bones Jaela broke during birth. I put on this labeled skeleton because I don't know what the names of the bones are, so maybe someone else doesn't either.

Both clavicles, both humeri (one possible in two places), right radius, both femurs, both tibia, both fibula, multiple ribs, and a skull fracture.