Wednesday, October 10, 2012

Feeding time with the twins - a yin and yang experience

The ubiquitous Chinese symbol yin-yang 
Life is about balance. Good and bad, night and day, happy and sad. I see it in the yin and yang (darkness and light) of Lucy and Lily's personalities. In the same way, feeding time has become both happy and sad for me. Let me explain why.

We learned at just 11 days old that Lucy had PKU, requiring us to give her a special PKU formula that is stripped of Phe but contains the remaining protein-based amino acids critical to her development. Though I was extremely sad I had to temporarily stop nursing her to get her Phe levels out of the danger zone, I was able to start again a couple weeks later. We quickly adjusted to a  combination of nursing and formula-based bottles, and feeding time was easy.

Fast forward to today. We started the girls on solids at about five and half months old, and they've adjusted well. In fact, Lily is my piglet! She eats anything and everything, and in very large quantities! Lucy, who has a limited diet requiring me to weigh her food in order to calculate the Phe in each item, has been less interested in eating overall, though that is quickly changing.

However, I've been struggling. It is VERY hard to give Lily such a huge variety - jars of every fruit and vegetable imaginable, combined with meat, veggie and grain combos and now, finger foods including puffs, Cheerios, and pieces of soft fruit like pears, peaches and melons. It breaks my heart to give her more of what she likes, while right next to her, Lucy "only" gets her measured amount. She is also starting to notice what's on her sister's tray, and even reached over last night to steal a Cheerio!

I "sneak" her bits of the fruit that I'm giving Lily, but have to be careful as I'm not yet including it in her daily Phe calculations. I know my feelings have nothing to do with Lucy - she loves her more-limited selection of fruits, veggies, and even rice puffs (which I do count). I don't know if it's having twins who are the same age and development level sitting side-by-side, but mealtimes have been making me feel sad lately. I am very careful to keep an upbeat attitude around the girls though, because we must never make Lucy feel she is "different" or that her diet is something to be sad about, but it's hard for me right now, nonetheless.

Lucy, eating rice cereal and fruit puree.

Lily, looking like she has badger stripes on her nose from prune and oatmeal cereal!
As with everything PKU-related, I know we'll get through this and that feeding the girls a little differently will become our new normal. In the meantime though, I am going to accept and share my feelings behind the scenes so that I can appreciate the things that are GREAT about mealtime - the girls are full of shenanigans each morning and evening and make messes of themselves that are nothing short of hilarious! In fact, seeing these photos makes it easy to follow the advice given by Bing Crosby in the old song that goes, "You've got to accentuate the positive, eliminate the negative, latch on to the affirmative, don't mess with Mister In-Between!" Less yin than yang, indeed.

4 comments:

  1. I found you on the Cook for Love Facebook page, (I think) and look forward to watching your girls grow. I have a son who is 6 and has classic pku and a daughter who is 3 and doesn't have pku. While it is different than raising twins FOR SURE, I do understand the pku and non pku side of eating with the kids. My daughter will try and share her food with my son who politely refuses. It is a challenge to get them both to understand it but one day they will. There are lots of resources and people to help out. Let us know if you have any questions and reach out to the other pku families!

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    1. Thank you! I am now following your blog. It's been SO wonderful to see how many PKU moms are blogging and active on Facebook. It makes the journey that much easier knowing other moms have forged a path before me.

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  2. My PKU daughter Rosie is almost 5 and her little sister, Carmella is almost 2. Carmella doesn't have PKU and even with them being 3 years apart I found myself wondering how I would have coped if they were closer in age! I was lucky that by 3 Rosie understood that she had PKU, and that it meant we had to weigh her food to keep her brain healthy and that there were many things that were good for us but not good for her. Carmella now desperately wants to share with her sister, but thankfully Rosie knows not to take anything. We are already teaching Carmella WHY she can't share food with Rosie and I'm sure one day she will be Rosie's biggest advocate.

    I have never been in your fairly unique situation, so take it or leave it, but here is my suggestion:

    Limit Lily's food a little too. That may sound strange but I mean just a little. Snacks should have 2 food groups and meals should have all 4. There is no need to give Lily 10 different options (not suggesting that you do this) while you can only give Lucy 2... in fact, doing so will probably set you up for trouble later as Lily will grow to think that the options are endless. I find that Rosie was always more willing to just eat what I put in front of her whereas Carmella has thrown and refused more food in a week that Rosie has in her whole life! I don't think you should limit the amounts that you give to Lily (within reason of course), but maybe limiting her snacks and meals to the same number of options that Lucy has would help - both you, now, and Lucy, later on.

    As they get older, and the quantities between the two are vastly different (almost inevitable), you will have to remember that Lucy is getting a lot of her calories from her formula and doesn't NEED as much calories from food as Lily will.

    My only other suggestion is educate, educate, educate! We were teaching Rosie before she could talk that she had PKU, that we had to weigh her food, that 'different foods are good for different people' and that she couldn't share food with anyone else. Always check with us first. The list of no foods. Now at less than 5 I have witnessed her politely refusing chili, birthday cake and ice cream, on her own, knowing that they aren't good for her and will hurt her brain. Those were all proud moments for me.

    The only other thing you can do is remember at each meal that as hard as it is, you are doing what is best for Lucy. I would stop now the practice of 'sneaking' her foods that you aren't counting... it is a slippery slope and she will learn at a VERY young age that 'cheating' a little is ok and could set you up for a very difficult time controlling her levels later on.

    Good luck and thanks for sharing!
    Nicole Pallone
    VP, Canadian PKU & Allied Disorders Inc.
    nicole.pallone@canpku.org

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    1. Nicole, thank you so much for the tips! I'm going to try giving both girls the same number of options at meals, though Lily has moved to mostly fingers foods, while Lucy isn't ready yet. I'm sure she'll catch up soon, and continue to try to steal food from her sister's tray!

      I also stopped sneaking her bits of food - everything she eats now gets weighed. I've also started talking to them a lot about "yes" and "no" foods, and showing enthusiasm for the yes foods. And I try to remember that Lucy doesn't need as much volume-wise as Lily, so (try) not to compare.

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