Tuesday, November 07, 2006

Baby E's Alert Levels

DH and I got to go on a date last night for the first time in months--hooray!

We went to the mall and did some window-shopping to get ideas for birthdays and the upcoming holidays, then checked out a European grocery store and went to a restaurant where DH got a meal and I drank green tea.

I had eaten before I left home, so it worked well for me to just drink tea and talk to DH while he ate. We haven't yet found anything at any restaurant that Baby E and I can reliably eat.




We did talk about lots of other things besides the kids, but near the end of the outing we talked quite a bit about Baby E. We came up with a way to apply indicators to Baby E's behavior for record-keeping and evaluation purposes.

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We came up with 5 levels:


1: Green. Energetic, basically content, laughs easily, active, social. Generally good mood with some fussiness when tired, any tantrums brief and easily resolved (lasting up to 10 minutes in general or 20 minutes when put to bed).

Plays happily alone or with others. Uses words and hand signs frequently. Highly imitative and engaged; learns new skills and uses old ones well. Generally either naps well or doesn't seem tired.

Eats well; enjoys a large variety of foods. Nurses every 2-5 hours during the day, but can go happily up to 7 hours between nursing sessions.





2: Yellow. Somewhat subdued, mild fussiness. More clingy and higher-maintenance. May seem tired but have trouble napping or nap more than usual.

Has a shorter fuse and more frequent fussy spells and tantrums lasting up to 20 minutes (40 minutes when put to bed), but is okay between. Has periods of relative happiness, but doesn't smile or laugh nearly as much as level 1. Smiles don't often reach eyes.

Sucks on lower lip or wants to rub my elbow frequently. Wants to be held or needs distraction more, but relatively easily calmed. Uses words and signs she already knows well; doesn't add many new ones. Is fairly happy as long as being held or something interesting happening.

May eat scantily or normally. Is less willing to eat non-favorite foods. Nurses approximately every 2-3 hours.





3: Orange. Moderate fussiness, often lethargic. Lots of tantrums.

Crying spells lasting 20 minutes to 1 hour during day or 40-90 minutes when put to bed. Naps erratically if at all. Acts tired. Cries often, but can be soothed and distracted with constant attention and effort.

Fusses or cries most of the time if not being held or distracted. Needs high amount of skin contact, wants to constantly hold my elbows and/or have her face touched. Does not want anyone but Mommy to touch or talk to her.

Communicates mostly in grunts, pointing and crying. Uses few if any words or hand signs; regresses on previously-learned skills.

May fluctuate between refusing all food and eating a few specific foods well; very picky about food and reluctant to eat unless it's something she really likes. Nurses every 1-2 hours. May squirm more than usual while nursing.




4: Red. Severe screaming spells. Crying often lasting 30 minutes to 2 hours or more. Inconsolable; cries whether being held or put down.

May seem fine between screaming spells, but more often lethargic and fussy for several hours at a time. Acts very tired but cannot sleep unless being held.

Communicates in grunts, nonspecific arm-waving gesture, & crying. Unresponsive or minimally responsive to most interaction, but may have periods of relative normalcy where she will play and interact, especially if something very interesting is happening.

Eats little if at all solids; may nurse a lot (every hour or more). Often fusses and/or squirms while nursing.

[No photo yet; will try to get video of the way she screams and throws her body around.]

5: Purple. Inconsolable, severe screaming/flailing episodes of 3 or more hours. When worn out from crying she just sits, almost completely unresponsive. Doesn't seem to care whether being held or not.

High-pitched screaming as if in pain; arched back, flailing, throwing body around. Eyes glazed, no attempt to communicate.

If sleeps at all either cries in sleep (even if being held) or wakes after 15-90 minute restless nap with lots of tossing and turning. Refuses to eat; sometimes refuses to nurse.



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I am going to print out calendars for each month and go through my old blog entries gathering data. Thankfully I wrote down a lot of the information I need.

I'll work on color-coding the squares for each level: 1 green, 2 yellow, 3 orange, 4 red, 5 purple.

Then in the squares I'll add codes that stand for other variables. For instance, I'll have codes to indicate the following:

Different types of bowel movements will be indicated near the top left of each square: D for diarrhea, C for constipation, U for other unusual stools, A for absent, N for normal.

Illness (i.e. cold or viral sickness) will be indicated in the top right corner with a black diamond; just the outline of the black diamond if recovering from illness.

Unusually good days are indicated with a green star in the top right corner.

Various nighttime sleep patterns are indicated in the lower left corner.
Green dot: Slept through the night
Black dot: Woke every 3-7 hours, went back to sleep within 20-30 minuts
Blue dot: Woke every 1-2 hours or less but went back to sleep within 30 minutes or so
Purple dot: Restless sleeping or crying in sleep; may need to be held to sleep
Pink dot: Awake periods of 30 minutes to several hours during the night, fussing/crying, fidgety, trouble going back to sleep.
Orange dot: Sleeps little if at all; cries a lot; awake most of the night
Red ring around dot: Excessive crying when put to bed or unusual difficulty getting to sleep.

I'm still trying to figure out what all variables I need to include.

On a separate sheet I'm going to write down everything I have a record of her eating each day of that month, so we can put the color-coded chart next to the eating record and see if there are any correllations. I'm also taking photos of some of her more unusual bowel movements for documentation, as Celeste suggested.

Yesterday she was at a level 2 in the morning and 3 all afternoon, but moved to a level 1 in the evening (after her afternoon nap). So in my visual I would color the bottom third of the outline for yesterday yellow, the middle orange, and the top third green.

She was happy all evening and went to sleep at midnight, but was again awake and fussy from 4-6 am. After I gave her some of the ibuprofen we had compounded free of her allergens, mixed into some plain yogurt, she finally went back to sleep and slept until 11. She's been at a level 1 all day so far today. The first two photos above are from today (in the first one she's making her "more" sign, BTW).

Interestingly enough, her nighttime behavior doesn't always seem to coordinate with her daytime behavior. Neither do her BMs. She can be awake and fussing most of the night, have diarrhea, and still be in a good mood all day--even when she has a cold on top of it all.

Maybe all this data-compiling will help to make sense of it all.


8 Comments:

Anonymous Anonymous said...

Oh my goodness. It's heartbreaking to see those pictures of E. looking so unhappy! It's really admirable all this work you're doing. Sending good wishes your way...

7:14 PM  
Anonymous Anonymous said...

You are such a good mom. And a great detective, looking for clues to what is ailing Baby E.

Big hugs.

10:14 PM  
Anonymous Anonymous said...

Terrific detective work, PK. This and your 15-month summary should be really helpful in working with the doctors. It'll help show them that you have documented facts, not "anecdotes".

Thinking of all of you.

8:31 AM  
Anonymous Anonymous said...

I agree with Genevieve -- all of this documentation is sure to bring virtually ANY doctor around to your way of thinking. I also think that the more data you have, you can isolate what triggers might be present and eliminate those. I know it's a load of work, but you're a diligent mom, and you'll do anything to help Baby E.

Please let us know if there's anything we can do to help you. And keep hanging in there!

1:38 PM  
Anonymous Anonymous said...

I recognized "more" right away - that is so sweet. I love to two-fingered approach.

You are a Mama-on-a-Mission. Let's see anyone that can even *try* to stop you. Go get 'em!

8:24 PM  
Blogger purple_kangaroo said...

Thanks so much, everyone. I have November and October color-coded. I still have to go through and gather other data, like details of what we ate etc. That is something someone could certainly help with if they wanted to--I'll post more details with the first charts tomorrow.

I'm compiling notes from several different sources besides my blog also to get the color-coding, so it is a lot of work. The other details will be a little more straightforward and will mostly be gathered from my blog, so that's something someone could assist with if so inclined.

But it's very nice to have the visual depiction, and assigned levels make it a little less subjective to categorize her.

I realized that for a while now I've probably mostly considered a 3 or below "normal" or even "good", depending on the context. Even a 4 I've mostly just kind of taken in stride. It's when the 5's start proliferating that I really get rattled.

12:13 AM  
Blogger Jennifer (ponderosa) said...

Hello, I've been seeing you comment at Phantom's but never read your blog before.

My husband has anaphelactic allergies. (However you spell that.) When he was a child he had constant ear infections, so bad he used to bang his head on the floor; but that was before people really knew about allergies & the doctor's best guess was to put a helmet on him! Then one day my mother-in-law saw a wad of dried blood fall out of his ear & she started doing what you describe here & eventually they figured him out.

His allergies have changed over time. Starting about 7 years ago he has been unable to eat pretty much any fruit w/ an edible skin (cherries, plums, pears, apples etc) unless it's cooked or dried. Also no nuts unless they're cooked or really old. But a decade ago he could eat all those things...

Anyway. I am new to your blog so I imagine you've tried a million things -- but I just wanted to say, don't forget to factor cooked v. uncooked when you mark what Baby E eats.

Good luck!

9:56 AM  
Blogger purple_kangaroo said...

Thanks, Jennifer. That's really helpful and something I'd forgotten to note much of the time. I should have thought of that, though, because I have one sister who can't tolerate cooked fruit of any kind, while raw is fine.

10:00 AM  

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