From Melinda on 02/24/2005

Hello All,

Another update on our beautiful, tenacious daughter!

As you can see, Angela is defying those grim predictions of her first
days and is now 4 1/2 months old. She is really doing well and this
update has only good news to share. Karina, who turned 5 last Friday,
kept saying in the days leading up to it, "I think she's going to stay
around for my birthday. She's not going to die right now. Isn't that

Angela continues to gain weight (slowly) and is now almost 9 lbs. She is
really settling into life and is still doing well with drinking my milk
from a bottle (alas not breast feeding yet). She has long awake periods
where she will lay on her back and wave her arms and legs and make little
cooing noises. She still sleeps a lot but is awake a lot more, AND, she
is now giving me a couple of longer stretches at night! She'll sometimes
go 4-5 hours between eating at night, making up for it by eating a little
more each time, though she still tires easily. Of course somehow the
extra sleep only seems to emphasize for me how tired I am! Funny how
that goes. Actually, I do feel a little more human these days, and
sometimes even can drive without worrying about falling asleep at the

The one thing we have found that Angela REALLY loves is the bath. She
gets so excited when she feels that warm water. She waves those arms and
legs around and gets this great look on her face. She'll stay in there
with me for 30-40 minutes at a time, just swimming around! Of course, it
doesn't stop there. She gets, as Dave calls it, "the full spa
treatment". Because she clenches her fists all the time, I have to be
sure to clean and dry her palms thoroughly after the bath, and I also use
the relaxation induced by the warm water as a good time to help her
stretch out her fingers and elbows and knees, all of which she pretty
much keeps flexed (though she can straighten them all). And it being
winter, you can't just let that baby skin dry out, so out comes the
after-bath oil and the full body massage as it goes on! And since we're
paying attention, we might as well trim those toenails and
fingernails--yep, a manicure and pedicure too. All of this is thoroughly
enjoyed by our little queen who just wiggles and coos and rolls her eyes
around. She always sleeps well afterwards, too. Next I suppose will be
cucumbers on the eyes and a beauty mask. She doesn't have enough hair to
style right now so that's easy. The water always makes the little tuft
on top of her head curl up in a cute way, though. And though the beauty
schools might look askance, I think her little sideburns give her a
decidedly elfin look, so they're staying!

I was waiting to send this update until after Angela's eye appointment
last Wednesday, so that I would have some hard news to report. And
wonderfully, it is good news! Angela has holes in her irises (called
coloboma) which give them an ice-cream-cone shape and make her gaze even
more entrancing and magical than normal. This we knew, but we didn't
know whether the defect included the optic nerve or not, or what else
might be going on there. She certainly seems to see and gaze at us and
at objects, but we wanted to know for sure. And the verdict is...great!
She has small cataracts in both eyes but they're too small to worry about
right now and the optic nerve in her right eye is normal. The optic
nerve in her left eye has some small damage but it's not enough to signal
eyesight problems--the eye doc said she'd seen people with 20/20 who had
the same amount of damage. So our perceptions of Angela's vision seem to
be right on target, and there's nothing we need to do right now about her

In fact, right now, we're not doing anything special for Angela other
than some heart medications for her comfort (her heart defects remain her
most vulnerable
aspect right now), some stretching, and trying to get her to grow a
little more.

And--breaking news!-- we are now hopelessly gonzo for her because she is
now SMILING at us! Yep, she had been almost doing it for a while but now
she breaks out in an undeniable grin, especially when being mercilessly
kissed by her parents (an indignity all of our children have to endure
from time to time). She also loves to see her brother and sister up
close. Wow! And I thought the household chores were suffering I'll just spend all my time trying to get her to smile.

So, all is joy right now, even though the uncertainty of her life
expectancy remains. It really is hard to remember that, when she's doing
so well, but at the same time she's obviously not like other babies her
age, and any dreaming we do about her future is always shadowed by the
unknowing and the probability of her limited time here with us. I don't
cry so much anymore, but the poignancy is still there, and the worry
still interposes itself. And of course, in some ways, the longer she is
here and the more delight we take in her, the harder it is to contemplate
letting her go.

On the other side of things, the she-may-be-here-for-a-while-yet side, I
got a good lesson a couple of weeks ago. Angela had been doing well
with her feedings, and after healing her head up she was gaining weight
at a pretty good clip. Then she got a cold and started having more
trouble eating. She was choking a bit and coughing and she would seem to
lose her seal on the nipple after a while and milk would leak out the
sides of her mouth. She stopped gaining weight and was just hanging out
where she was, about 8 lb 3 oz. Then her cold seemed to be better but
she still was having a terrible time feeding. She would spit whole
mouthfuls of milk out, and it was really hard to tell if she was getting
much milk at all. I started to get really worried, even thinking that
perhaps she had already "peaked" and was now going to start losing her
ability to eat, maybe start "dwindling away", as the doctor described it
in the hospital. I was thinking all sorts of dire things, and made an
extra appointment with the early intervention OT to come out and try to
figure out what was going wrong with Angela's suck and swallow
coordination. Well, as you may have guessed, all of those thoughts were
wrong. Actually, what had happened was that the special nipples we were
using (we only had 2) had gotten ripped, so that the opening was about 3x
as big as it should have been. And these nipples have a one-way valve,
so that when she sucked, she had to take what came. The poor thing was
getting flooded! Of course when I figured it out (just a moment of
epiphany, as I looked at the nipple one day) I was mortified, and felt so
sorry for her having to try to eat under those conditions for so long!
But also, I learned something important about Angela and myself--about
Angela that really she has shown herself to be quite strong and
resourceful, and about myself that even though I do need to be realistic
about her situation, I needn't jump to dire conclusions right away. I
was so worried about HER that I assumed her feeding difficulties to be
because of something wrong with her. I need to look for other causes
too. Hopefully I'll take the lesson to heart and approach things in a
lighter way in the future. As Dave said once: "We've all been talking
about what's wrong with
Angela, but look at her--there's an awful lot that's RIGHT about her!"
And there really is.

Greetings to all of you, and here's hoping that even if your lives are
not as intense as ours right now, that they are still filled with that
very stuff of life, and your feet are on the path that was made for you.

Melinda, for the Rickers all.