Even when it's not fun, part 2

When Shiny turned about 7 months old, the doctor finally took me
seriously when I worried that her gain had plateaued over the past 7
weeks. We'd started her on solids at just over 6 months, and discovered
to our delight that she took to thick, chunky banana like a champion.
Just scrape a little off with a finger, stuff it in her little gorble,
and she'd "chew", move it around with her tongue and swallow. But just
TRY to puree the same banana and add breastmilk... and gag city. I
appeared to have a kid determined to do things backwards. But solids
had done nothing to help her gain weight, and I was concerned. She
seemed just as willing to nurse after solids as before (not only
doesn't she signal hunger, she doesn't signal satiety either), but I
was nursing all I could, and she was still not gaining, and bottles
were even more alien to her now... and if you think that purees were an
issue, liquids were out of the question.

The doc wanted her on high-calorie milk-based formula. I balked. High
calorie formula is 22 calories per ounce, just like breastmilk. Regular
formula is 20 calories per ounce. Rather than trying her on whole cow's
milk protein based formula, I got some good start and tried her on
that, briefly, because if she didn't tolerate formula at all, I'd
rather not sensitize her to whey *and* casien. What we didn't realize
is that almost every single infant formula out there has citrates in
it. And when potassium citrate hits the stomach, it turns from that
into a potassium ion and citric acid. She took less than 2 ounces,
wasn't happy, then at the next feed, she vomitted the formula almost
instantly.

So I thought, "Okay, we'll thicken up some coconut milk with rice
cereal, maybe it's the texture." See, coconut oil is in almost all
formulas, and she'd either tolerate it or she wouldn't. She didn't.
Curious, I tried her on rice cereal thickened with breastmilk... and
she vomitted that, too. Meanwhile she'd eat bananas happily all day
long. On a whim I tried her on white potato. No problem. Sweet potato.
NO problem. Whole rice? NO PROBLEM.... Hm. To this day, I'm not sure
what the beef is with rice cereal, but she vomits rice chex and rice
cereal but does fine with whole rice, white or brown, and unfortified
rice flour. But formula was out, rice cereal was out...but lookie! She
didn't throw up when I took a big ol' banana and put a heaping dollop
of coconut milk fat on it... she gobbled it down. We had a fat! We
started adding coconut milk to almost every solid food she ate. It was
ideal-- thick enough that she could move it around in her mouth, but it
would melt away without gagging her and she'd get much needed calories.
I took to draining the liquid and keeping the fat from the coconut
milk, for her. And she started gaining again. We discovered some more
weird food things... carrots and broccoli were both problems. They
actually share, I discovered later, a specific protien which is an
allergen. That was reassuring, to finally have a common thread for two
foods she reacted to. She also throws up most refined grain products,
but not most whole grains. Barbara's oatmeal animal cookies are out,
but plain oatmeal with coconut milk and banana and flax is fine.

Adding coconut milk may well have been the key to turning her around
developmentally. At 6 months, everything except eating looked like a
much younger baby. If I had told a stranger she was 2 or 3 months old,
they wouldn't have questioned it. She had that infant "snuggle" and
still often does. But coconut milk, breastmilk and physical therapy
started her really progressing in a way that she just hadn't much
before. I learned later what a good fat coconut is, and it seems to
simulate the metabolism...and with the way she runs out of energy, she
needs it!

Meanwhile nursing was proceeding well.

Right up until we got teeth. I apologize to any mom to whom I ever
suggested that biting was an easy thing to break. It was with dd1. But
DD1 is very good at problem solving, was very sensitive to my emotional
states, and had fully functioning ears when she first bit me. So my
yelp-and-flee method worked brilliantly with her. Shiny just thought it
was funny...and since she NEEDED to nurse and would sometimes bite at
the BEGINNING of a feed... let's just say it was a problem at 8 months
and it is not less of a problem now. Developmentlaly delayed, hearing
impaired babies do NOT react the same to yelp-and-flee. She doesn't
make the connection between what she's doing and my reaction. The
biting is miserable and if I felt like I could wean her safely, I
probably would. But she needs her milk more than I need intact nipples.
We do what we can... I stop a feeding if she's biting. But this child
will sometimes grab my breast with both hands, bite down and pull in
the opposite direction. I'm pretty good about heading it off, but not
when I'm tired. ANd when I'm tired, she's likely to be tired. Or
teething. Nothing helps, I just have to stop, wait, try again.
Sometimes we can't wait--she clearly has to eat and I clearly need to
nurse her. I've resorted at times to basically hogtieing her with
receiving blankets to keep her hands off my breast when it's bad, and
sometimes she nurses with my finger sitting on her cheek, ready to
break in and keep her jaw from clamping down. She's only drawn blood
twice, and only eroded a spot on my nipple once. She pulls her tongue
back when she's latching on, so the teeth are exposed, and while she is
trainable, she's not very teachable, because she doesn't mimic. We're
still working on this one.

We finally got her hearing screened (it had been put back while we
coped with the genetic diagnosis, nursing issues, heart doc, etc.) back
in December. And were surprised but not shocked that there was a
problem. She has great residual hearing...but needs aids. And of
course, right after her screening she got her first ear infection,
which delayed getting those aids almost two months. THe ear infection
turned into a sinus infection, too, and she was put on antibiotics. I
asked about sodium citrate, if it was related to citric acid, and they
said, "No"... which was a flat out lie/mistake/stupidity. THEY were
supposed to know. I found out later. But the amox. gave her the worst
diarrhea and the horrible butt rash came back... and when I found out
that sodium citrate is very much citric acid.... it meant my suspicion
was confirmed. The only liquid that was appropriate to her condition
that didn't have citric acid....was orange flavored. And she started
vomitting that pretty quickly, Augmentin liquid, I think. I finally got
them to give me a cherry flavored chewable augmentin, ground it up in
her food, and lo, she improved....

But the antibiotics truly knocked out her intestinal flora.... gone was
that "movie theater popcorn" smell of breastfed baby, or the "banana
bread" smell of a baby whose primary non-milk foods were banana and
coconut milk, and in the place, horrendous constipation smelling of bad
breath. We're talking hard, solid, dry poo that took her hours to get
out.

I took her back almost completely to breastmilk--that did not fix it.
Finally I started giving her flax and probiotics powder, adding a tiny
bit of chlorophyll, and mixing that with oatmeal or her banana
mix...and finally, 2 months after the antibiotics, that fixed the
constipation. Back were the normal bf baby poos, though a bit green
from the chlorophyll, and she felt a lot better.

At 1 year, she has hearing aids and we have learned to measure her with
a different yardstick. To most observers she looks and acts like a
fairly normal 7 month old. Except that her language is ahead of that,
and her feet STILL don't fit in newborn sized robeez without great
flopping bagginess. But every accomplishment--it may seem like an odd
thing, to celebrate that your 9 month old has finally learned to
balance herself in a sit for a good long time without support, or that
your 11 month old will finally take enough weight on her legs that she
can stand with support for a little while... until you realize that
some kids don't learn to sit until they're 3 years or more. That low
tone issues might keep a kid from walking until age 10. (I'm talking
specifically about other kids with her exact deletion).

We realized at some point that everything that "comes naturally" to
most babies, she has to do "on purpose". That means she has to think
about things that most people don't have to think about. And her
receptive language skills lead me to think that if her brain would just
DO what she told it to do, she'd seem like a totally different kid.
Sometimes it does, and she does, out of the blue. You should have seen
my jaw drop when I showed her a picture of a banana in a book and a few
minutes later, when we turned to that page again, she said, clear as a
bell, "Ba na na. MMMMMMMmmm." You would not believe how fast that girl
was eating banana. She's never said it again quite the same, but that's
normal for her.


To have a baby go from saying Mom and only Mom for 6 months to
rattling off "Banana, Mmmm", "Buh" (book, repeated many times and the
most reliable word she says), and "Muh" (More, always when eating and
someone getting distracted...)... and finally playing with her voice,
even with the aids out.... What used to make me worry now makes me
rejoice.

And breastfeeding? Both other kids we know have had major food issues,
including reflux (surprise? not...) and enough food sensitivities to be
on elemental formula for at least part of the nutrition. One girl is 4
and only a tiny bit bigger than Shiny is now. The other is 12 and the
size of a 7 year old. Their issues are different, and I don't know if
they nursed or not, but as long as we are still trying to figure out
what Shiny can and can't eat safely...nursing is a welcome safety net,
even if it isn't always fun.

We do have our moments. She *loves* to nurse. Today, she held her hand
up in front of her face and got a thoughtful look on her face and
started flexing her fingers in and out... a rudimentary "Milk" sign.
WHen I immediately offered her the breast, she was most pleased. She's
started understanding about language in general and the things she gets
the most excited about, spoken or signed, include "Want num nums?"
"Would you like to nurse?" "Do you want Mama Milk?" She's hand babbled
"mama" or something like it a couple times. She's actually said "Mom"
and "Mama" more times than I can count.

Aside from her roughness--which I suspect, ultimately, to be more
clumsy than malice, she's nursing fairly normally for a one year old.
She does gymnurstics...she wants to practice her skills while nursing
(could that hand compulsively clutching my breast tissue be making the
milk sign? It works to get a letdown but hurts like heck if her nails
aren't trimmed...). All of them. She has taken to, finally, mimicking
me in the one way that will have her ultimately thriving in our little
family, even if she never learns to walk... she likes to "read" while
she's eating...and will often nurse while clutching a little board
"Buh!"...someday I'll get someone to snap a picture, because half the
time she's nursing, I'm reading, too.

Jenrose

wrote:
[.snip wonderful description of amazing approaches to many challenges.]

Aside from her roughness--which I suspect, ultimately, to be more
clumsy than malice, she's nursing fairly normally for a one year old.
She does gymnurstics...she wants to practice her skills while nursing
(could that hand compulsively clutching my breast tissue be making the
milk sign? It works to get a letdown but hurts like heck if her nails
aren't trimmed...). All of them. She has taken to, finally, mimicking
me in the one way that will have her ultimately thriving in our little
family, even if she never learns to walk... she likes to "read" while
she's eating...and will often nurse while clutching a little board
"Buh!"...someday I'll get someone to snap a picture, because half the
time she's nursing, I'm reading, too.

Jenrose, you are a goddess!

Emily
--
DS1 5/02
DS2 9/05

On Sun, 26 Mar 2006 06:51:30 -0800, Emily wrote:

wrote:
[.snip wonderful description of amazing approaches to many challenges.]

Aside from her roughness--which I suspect, ultimately, to be more
clumsy than malice, she's nursing fairly normally for a one year old.
She does gymnurstics...she wants to practice her skills while nursing
(could that hand compulsively clutching my breast tissue be making the
milk sign? It works to get a letdown but hurts like heck if her nails
aren't trimmed...). All of them. She has taken to, finally, mimicking
me in the one way that will have her ultimately thriving in our little
family, even if she never learns to walk... she likes to "read" while
she's eating...and will often nurse while clutching a little board
"Buh!"...someday I'll get someone to snap a picture, because half the
time she's nursing, I'm reading, too.

Jenrose, you are a goddess!

Seconded!
--
Linz
YB: 2 years, 11.5kg, 83cm, still breastfed.

Jen,
You and Shiny are just amazing and a real inspiration.
No matter what the future holds for Shiny having you for her mom is the
greatest blessing she could ever have wished for.

Karen

Jen,

I hope you are saving these posts so you will have them to look back on
in the future to remember how hard you have worked for Shiny. She is
so lucky to have you!

Leslie

Jenrose, you are amazing, I read your recent post on mkb about not even
being sure if Shiny would be here now if she had been born in hospital and
gone on the conventional route of care. It's amazing how much you have taken
stuff in hand and logically worked through things, getting the whole
picture, the fact she is doing so well now is all down to how you have cared
for her, how you have known when to say no to the doctors. I know I couldn't
have done it and it's not really the breastfeeding that makes it so
admirable, it's everything!

Well done

Anne

You are my hero.

Hugs to both of you,
Amy

You are an amazing woman, and this is a wonderful, inspiring story.
Thanks so much for posting this.

Cheri Stryker

Lucky Shiny chose YOU to be her mother!
Congratulations on a hard job well done (and still doing). Please keep
us updated, as we are all interested in her and your story.

Makes me look at my sometimes tooth-marked areolae and think, "It could
be worse"

*hugs*

Jo

snip
Jenrose


hi jenrose, doing a great job.

have you tried avocado as a good fat to feed shiny up with?

chris