Monday, January 24, 2011

Little feeding helper

KiKi wants to help Mommy with everything now.  Everything.  She wants to do all the jobs around the house that Mommy or Daddy usually does.

One of those things that she likes to do is to help put milk in my belly.  One day she decided to give me some all by herself.  I was just resting on the couch and she thought she would come and give me some milk.  She found my tube in the cabinet.  She got the wrong piece for the milk to go in, but that’s ok. She’s still learning.

Then she has to find my button under my shirt.

And she knows how to plug it in, too.

And after she did my pretend milk, she tried to find her button for some milk in HER belly.  But she only has one.  And she always wants it to fit in there…

She wants to have a second belly button just like me, but nope…KiKi, that’s MY thing!

Friday, January 7, 2011

Popping in for a sec

A few things to note…

  • I’m working on a blog re-do, to represent a different approach to things blog related as I move forward.  I hope to have it up this weekend. No promises.
  • Braska’s finished day 2 of a 3-day wean (tube feeding transition tool…measuring ability, not actually weaning) I’m documenting that over at her blog if you’re interested.
  • Tonight we had medical exams for new life insurance policies. I’m 5’2”.  Not 5’3”.  I’ve been fooling myself thinking I had an inch I don’t have.  But oh well, still just plain short.
  • We’re in the middle of setting up a special needs trust and doing our wills.  Hence the aforementioned updated life insurance policies.  It’s important, but it’s a lot.  I don’t mind the “someday I’ll be dead” thing…I’m good with all that completely.  But all the arranging and considering what we want for the girls, especially Braska, when she’s a teen and beyond.   Writing the Letter of Intent that specifies SO many details of what we hope her life will be like and how we want it to look as far as we can see. It’s hard to think like that. My brain doesn’t work that way.
  • Kinlee is such a funny girl.  She tells knock-knock jokes, she does impressions of other people, she has a few fake voices and distorted faces that she pulls out here and there for a laugh.  It’s enough to make us just stare at her occasionally.  The kid is not even 2 yet.
  • I really need to do another installment of Kinleeisms.  They are unbelievable. The girl has great sentence structure, pronouns, tense, proper use of possessives, and on and on.   She’s a little tiny adult, with the full ability for conversation and real discussion, and she converses CONSTANTLY.
  • Someone bought me a new pair of shoes yesterday. They are AWESOME.  I cannot wait to wear them. I have a lot of foot pain, so to find a shoe that’s classy looking AND comfy. Really honestly comfy!  I’m still blown away.  I even wore them around the house last night. Just because.
  • It’s amazing to me how something that has been long anticipated with excitement can become totally revolting in the split second of a condescending glance.
  • Tomorrow begins wildcard weekend.  Should be some fun football, even though the Bears have a bye this week. Enjoy!

Mommy report: 3-day wean, day 2

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!

Thursday, January 6, 2011

Mommy report: 3-day wean, day 1

Under the supervision of Braska’s nutritionist, we are attempting a 3-day wean from nutritive support via her g-tube.  This DOES NOT mean we are ready to be done with the tube, not by a long shot.  But it does mean that she has made some very good progress.

I’m going to document some here because I know some of you are in a similar boat with feeding issues and tube feeding.  If you have any questions, let me know.

We started this morning, and the key changes to how life will go for three days are these…

  • Braska gets nothing in her tube except a 50/50 mix of water and Pedialyte. Nothing of actual nutrition. Just fluid support.
  • It’s all on me to be sure our schedule is open enough to allow for time to sit at the table and work on as much oral intake as possible.  We get one shot at a wean as authorized by the school district via her IEP. No pressure.
  • We will be tracking every single mL and calorie that she takes in, and the nutritionist sees her each day for weight check and to tally calories to be sure we’re safely providing what she needs.
  • Her schedule requires us to be putting something in her, via tube for fluids or orally for nutrition (purees/mashed meals, etc), about every 2 to 2 1/2 hours.  Hence the schedule openness being important.

I would have liked to arrange this for a Friday, Saturday, Sunday so as not to have to coordinate with a school day, but that’s ok. We made it work today, even though it meant meeting the nutritionist at the school for her first weight check and to make sure we were all on the same page.  Then I returned an hour later to give her the mid-morning fluids before her snack at school. (They don’t give her any tube feedings at school, just not necessary to do, so it was easier for me to go do it for the one time it’s needed instead of prepping someone on how to do it for one bolus feed.  It took all of 2 minutes. 5 oz.  LOVE that g-tube sometimes. So efficient.)  Now I go back in about 30 mins to pick her up. Glad that’s just one day, though.

Here’s how her schedule looks…this is fluid intake, which is supposed to be between 30 and 37 oz each day.  Which is A LOT more than she usually takes, and more than KiKi has either.  So we’ll be going through diapers like crazy, I’m betting.  (They warned me not to worry about our pseudo potty training during this wean time.) We’ve set it up to hit the 30 oz mark… these are all fluid amounts to be given at each time, remember.  Along with whatever oral food she’s taking.  These amounts can be given by mouth or by tube, but she takes very little by mouth in terms of fluids.

7 am—30 mins before breakfast—3 oz
730 am—Breakfast—2 oz
10 am—mid morning snack—5 oz
12 n—30 mins before lunch—3 oz
1230 pm—Lunch—2 oz
330 pm—mid afternoon snack—5 oz
500 pm—30 mins before dinner—3 oz
530 pm—Dinner—2 oz
830 pm—Bedtime—5 oz

So far, she had 5 oz before breakfast by tube, then she ate 4 oz yogurt for breakfast and I managed to get 2 oz of milk in by mouth over about 40 minutes of really pushing her.  But she did it.  Then I gave her 5 oz at her mid morning time and she was getting ready to have her applesauce snack at school, which she likes to finish, so 4 oz there.

We’ll see… the nutritionist will be back tomorrow mid day, and I’ll scan and email her the daily log list tonight.  I am glad Braska’s to the point we can do this and see how much she will take in, but at the same time, it’s scary to think about having to keep a schedule like this all the time if she’s going to be “downgraded” on her tube, meaning that she would be classified as needing her tube for like 50% nutrition instead of 90% nutrition, or something like that. 

At her weight check this morning, she was 22 lbs 15 oz.  She was also 35 1/4 inches. The little muffin is 4 years old! She had been up slightly over 25 lbs for a short while at her record high weight, but being “belly sick” for about 10 days over the holiday cost her well over a pound, and almost 2.  She had lost a little before the ickies when she had been doing better on oral intake.  It’s really hard to get her enough calories in foods that can be properly mashed/blended to a texture she can handle.  So we’ll be watching her very closely. 

Here’s hoping I can maintain my sanity, remember the rules and watch the clock.  Oh yeah, and not forget that I’ve also got another child and a husband (and a dog) that occasionally need to be tended to as well.