Saturday, August 20, 2011

August 19, 2011

2 months, 2 weeks since diagnosis
day #19 of current hospital stay

Sometimes the doctors are idiots. Today, the nutritionists came to see me. Now first, I want to say that Riker is doing awesome. She is taking her bottles and she is putting on weight. She is hitting her milestones. She's not ahead - but she's not really behind, either. I would not say that she needs or is even ready for solid foods. She's definitely not interested in what I'm eating and has just started to hold her head up really well. Transplant is only weeks away and she's likely to feel very sick and reject food. I don't want to start solids only for them to become unpleasant next month and have to start over. Breast milk will be the best for Riker through chemo and transplant - it has all the nutrients that she needs and is more gentle on her stomach.
That being said, first of all, they wanted to start solid foods. Nope - not doing it. Next? They want me to freeze my milk in 6oz bags. What? They don't even make bags in that size that I know of. Plus, she's drinking frozen milk from June. She'll be drinking the currently frozen milk well after transplant. The bottles can be made in larger amounts - it doesn't matter how much frozen milk is in a single bag. I told them that we'd already been making 6 oz bottles but she never takes more than 4 1/2 oz or so. We can't force her to eat more and she's gaining weight! ugh.
They told me they are concerned because her weight gain has slowed. (she gained 3 oz last week instead of 4). They said they do a 'baby bmi' as a ratio of height to weight. The last measurement of height was a lot larger and now the ratio was off. Are they kidding me? Now they're upset because she is growing longer? She's gained over 2 lbs since she's been in the hospital? I honestly asked them if they remembered that she has cancer and that she's just come off of chemo. We should all be doing a celebration dance - not worrying about her very adequate diet.
Finally, her oncologist said that if we weren't going to start solid foods, we should at least give her some cheerios. Honestly? I just continue to shake my head. He is concerned that she won't develop her pincher grip. My goodness, she can barely grab and hold her teething ring. Babies don't usually start finger food until they're 9 months old. Certainly not until they've at least had some very watered down baby food. I decided to humor them on this one. Not because I thought it was necessary - just because I thought it might be fun for her to play with a pile of them. It was fun and she was totally uninterested in the entire ordeal.
I wish they'd all just focus on curing her damn cancer and let me deal with her diet. I am doing just fine and they don't need to butt in until there is problem.


  1. Holy crap sister, you are doing more than fine! I found your blog via some crafting blog (can't even remember which one) and have been following/lurking for a while... but I had to comment for this one because it hit close to home.

    We lost our little son Vincent (age 18 months) to a really aggressive, super rare form of liver cancer. 9 months ago today. He has a brother that's less than 2 years older than him. And so when I read your posts about how hard it is to go back and forth between your two children, I just cry because I can understand a bit how hard it is to have your kids separated, to know that you can't be with both at the same time... and they both need you... You are doing such a good job though being there for them and pumping (even though we both know what a complete pain that is!!) to give Riker so much good nutrition that's really helping her...

    Little Riker is such a champion, doing so well fighting cancer and developing so great as well, we are all proud of her and rooting for her and your family.

    Sorry for the super long comment. I guess I had more to say than I thought. :)

    Just know that there are a lot of us out here that are praying for you guys, praying for Riker, and we're so happy to hear how well she's doing.

  2. They might know cancer, but cleary not babies.....

  3. Sometimes Mom knows best. Stick to your guns unless they give you a reason better than the baby BMI. In this healthcare system we all are dealing with you need to be your own advocate and trust in your gut. I love reading your updates and am sending cyber hugs to you and your family! That baby is beautiful! Hang in there. I can't wait to see the posts about Riker getting better! Yeah Valentine for being so strong for her sister!

  4. She looks to be a healthy weight. All babies are different and like you said, she has been having treatments.
    You are doing a great job with EVERYTHING. I will be praying for your family everyday. Stay strong.

  5. Keep up the great work!! You have the right idea about knowing your child best. Keep fighting for what you feel is best.BREAST MILK is by far the best nutrition for your child..if anything im surprised they wouldnt suggest a little cereal added to the milk to "fatten" it up perhaps. Oh doctors, so smart but yet so dumb . we're rooting for ya from belfast !! xox

  6. My son was/still is a small eater. We could only get him to eat a few ounces at at time just enough where he felt full then he was done. He woke up and or ate every 3-4 hours and he's a skinny tall baby. The doctor said he needed to eat more - OK smarty how do I make him do that? I don't know why they make such a big deal about weight and feeding. Her body is taking a big hit and the fact that she's eating and gaining weight everything will even out. I half listen to the "experts" they are idiots in a lot of cases everyone is different. I started to thicken babys formula with rice cereal as a starting point to solid food and real fruit puree (homemade) popscicels. Helps with teeth too and they get used to the fiber a little at a time and sleep longer at night.