Wow! It's been some week. My baby with the color changes and decrease in suck
ability was hospitalized a week ago Monday night and not discharged until
Friday evening. She apparently deteriorated a lot on Monday from when I saw
her the previous day, was very floppy, suck very poor, etc. Oxygen sensor on
her foot rang alarm several times when foot turned purple; baby's face/body
never did the same color changes that I saw, however, during her hospital
stay.
On Tuesday, she had three apneac alarms from which she was easily roused by
touch. Doctors ruled out heart problems by stethoscope and pursued
neurological issues, along with metabolic problems. "Myasthenia" was tossed
around, and at one point they suspected a serious rare enzyme deficiency.
Blood work was done resulting in the conclusion of high levels of lactic acid
(possibly indicative of a missing enzyme) in 2 out of 3 tests--- positive
first time, negative second, positive third. A muscle protein/enzyme test is
currently being analyzed that should help to clarify or rule out the
diagnosis, though they feel that baby now looks too healthy to have this
condition. Mother fed baby EBM plus supplement via finger feeding.
After a couple of days in the hospital, baby spontaneously perked up; her
muscle tone came back, the pastiness turned to healthy pink, and she began to
feed better. Nevertheless, one doctor favored putting a feeding tube in her
so that mother wouldn't be inconvenienced, and most of the staff, especially
the speech therapist, felt that baby should be put on a bottle. When allowed
to try it, baby did poorly for the first day but then learned how to work the
bottle, and staff considered the feeding problem "fixed". This mom is
determined, however, and has informed them that she doesn't consider it fixed
until the baby is able to breastfeed! Baby improved spontaneously, color
changes and apnea ceased, and has put on weight--- from 9-6 when I saw her on
Sunday to 11-4 eight days later! She's chug-a-lugging milk right now, and mom
has been pumping and bottlefeeding, able to provide a little more than half
the 35 oz baby has been taking.
Saw them both today, with intent to get baby back to breast. Digital suck
assessment showed better cupping and sucking this time, though baby had a
hard time starting and was sloppy at first. Mom had been working at the
breast with limited success, but wouldn't you know it; baby had the best
unassissted feed either of us has ever seen today; mom was even able to let
go and didn't have to "hold the breast in" the whole feed! Baby was hard to
start, and promptly tried to fall asleep at breast, but once I started
massaging her jaw and head she would periodically suck, draw and swallow very
well, without benefit of additional MERs. Baby took both sides twice this way
and started herself up many times *without* any manual stimulation as well,
and mom was thrilled. Our plan for the moment is to see how much of this baby
will do, and to supplement by finger feeding with SNS or syringe as
necessary. I am expecting mom to need to supplement, but this should help her
own supply more than pumping if baby is willing and mom has the time to sit
and feed.
Other related issues: no official heart studies were ever done, but a heart
surgeon who was consulted by phone yesterday thought that an echo cardiogram
should have been done. He suspects that initially baby's fetal circulation
didn't switch over properly, and that her syptoms were consistent with this
hypothesis in that her sudden improvement in the hospital was due to the
valve finally switching over on its own.
Meanwhile, someone else has suggested botulism, which when I looked it up
seemed to hit on about 7 out of 10 possible symptoms. The only problem is,
where would she have gotten it so soon? What about the fact that baby didn't
suck properly at birth?
So baby is doing better, but no definitive answers. If anyone has further
thoughts, we are entertaining all due to lack of diagnosis.
-Lisa Marasco, BA, LLLL, IBCLC
Santa Maria, CA
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