Yesterday went pretty well overall. At dinnertime, Braska was not much interested in taking anything. It took alot of prodding to get her to take her soup (vegetable beef soup, condensed, with only a slight bit of milk added to reach the right consistency. Pulsed with immersion blender.) but she got it in. The oral milk intake was even more of a challenge. She ended up taking about 1 ounce before I gave up.
For the whole day she got 31 ounces of fluids in, 5 ounces of whole milk orally and 26 ounces of the "50/50" Pedialyte/water mixture. The poor girl was going through diapers like never in her life. And she didn't really care for all the action her body was experiencing. She seemed uncomfortable, but not really unhappy.
Of course she woke up this morning in a totally wet bed, wearing completely wet PJs. That's the first time that's ever happened, with only a couple previous experiences of ANY diaper leaks at night. And she generally has 8 ounces of Pediasure right before bed, so that's something...
Today we had a bad start, schedule wise, since we took M's car to the mechanic before work then I drove him to work, 25 minute commute each way. By the time we got home, we were already over an hour behind on the feeding/fluid schedule. But we almost caught up before lunch when the nutritionist arrived to check in.
Braska weighed 23 lbs 3 oz today, so it's good that she's not going down yet. (Kinlee was about an ounce over Braska when we weighed her too. Wow.) It was ok'd today that we decrease some of her fluids since it seems that she was overwhelmed with the constant input, both orally and via tube, and she didn't seem as interested in her oral foods as she has been lately. I think she was just flooded with the 50/50, being so much more liquid than she generally gets.
So we're down to 20 ounces of fluid each day, for today and tomorrow, hoping that she'll feel more like eating. Tonight for dinner she did well, enjoying pinto beans and a yogurt chaser. Then she asked for more yogurt later in the evening. The girl does love her yogurt.
Tomorrow we'll see how it goes, but I feel like she might do better on her oral foods again without the excess fluids keeping her belly from really getting hungry. She has never really shown any indication of hunger or thirst, but lately she has been asking for milk occasionally, so we hope that she's starting to get some sensation that she wants something to eat or drink.
As a side note, other things she likes to eat...cream-based chicken and dumpling w/veg soup, pulsed with immersion blender; lasagna, pulsed; cottage cheese with peaches, pulsed; fruit cocktail blended then stirred with baby oatmeal cereal for proper texture; pork roast with potatoes, carrots, and onions, very tender in crock pot, then pulsed; mashed potatoes (fattened up with gravy of some kind or a little butter and sour cream.)
We have to add alot of things to her foods to add calories, fat, or protein to her diet. It's hard to work the balance between the right texture, calorie density that she needs, and proper nutrition...all in little cups of puree.
Thanks for your kind words and encouragement. We have lived in this extra-frustrating and constantly-an-issue feeding world for 4 years now. We know that this isn't some drastically difficult thing, but at the same time, it is hard to really THINK about feeding/calories/fluids/proper technique this much for 3 days straight. So it is a bit tiring, but she's going to do great, and I'll survive!
For the whole day she got 31 ounces of fluids in, 5 ounces of whole milk orally and 26 ounces of the "50/50" Pedialyte/water mixture. The poor girl was going through diapers like never in her life. And she didn't really care for all the action her body was experiencing. She seemed uncomfortable, but not really unhappy.
Of course she woke up this morning in a totally wet bed, wearing completely wet PJs. That's the first time that's ever happened, with only a couple previous experiences of ANY diaper leaks at night. And she generally has 8 ounces of Pediasure right before bed, so that's something...
Today we had a bad start, schedule wise, since we took M's car to the mechanic before work then I drove him to work, 25 minute commute each way. By the time we got home, we were already over an hour behind on the feeding/fluid schedule. But we almost caught up before lunch when the nutritionist arrived to check in.
Braska weighed 23 lbs 3 oz today, so it's good that she's not going down yet. (Kinlee was about an ounce over Braska when we weighed her too. Wow.) It was ok'd today that we decrease some of her fluids since it seems that she was overwhelmed with the constant input, both orally and via tube, and she didn't seem as interested in her oral foods as she has been lately. I think she was just flooded with the 50/50, being so much more liquid than she generally gets.
So we're down to 20 ounces of fluid each day, for today and tomorrow, hoping that she'll feel more like eating. Tonight for dinner she did well, enjoying pinto beans and a yogurt chaser. Then she asked for more yogurt later in the evening. The girl does love her yogurt.
Tomorrow we'll see how it goes, but I feel like she might do better on her oral foods again without the excess fluids keeping her belly from really getting hungry. She has never really shown any indication of hunger or thirst, but lately she has been asking for milk occasionally, so we hope that she's starting to get some sensation that she wants something to eat or drink.
As a side note, other things she likes to eat...cream-based chicken and dumpling w/veg soup, pulsed with immersion blender; lasagna, pulsed; cottage cheese with peaches, pulsed; fruit cocktail blended then stirred with baby oatmeal cereal for proper texture; pork roast with potatoes, carrots, and onions, very tender in crock pot, then pulsed; mashed potatoes (fattened up with gravy of some kind or a little butter and sour cream.)
We have to add alot of things to her foods to add calories, fat, or protein to her diet. It's hard to work the balance between the right texture, calorie density that she needs, and proper nutrition...all in little cups of puree.
Thanks for your kind words and encouragement. We have lived in this extra-frustrating and constantly-an-issue feeding world for 4 years now. We know that this isn't some drastically difficult thing, but at the same time, it is hard to really THINK about feeding/calories/fluids/proper technique this much for 3 days straight. So it is a bit tiring, but she's going to do great, and I'll survive!
Aside from the wet bed, it sounds like a good day!
ReplyDeleteThat does seem a bit overwhelming! Addy has 4 bolus feedings per day (every 4 hours) of Elecare. Three 8 ounce feedings and one 4 ounce feeding. She gets 5 ounces of water per day. All through her g-tube. Before we give her the bolus we are presenting Stage 2 baby food, she is just now beginning to take that well. She is averaging 20-30 bites at each meal. We started giving her baby juice from a spoon this week as well. She is having no problems with consistency, no choking or gagging on the thin liquids so that is really good. We have a long way to go but since she just started swallowing in October I think we're on our way! I've talked with Julie and I think we're going to try to get together sometime late afternoon or evening on the 12th if that works for you!
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