I'd like to update you on the case I posted about. The baby was
hospitalized for 10 days in a children's hospital. When he was admitted, he
was dehydrated and having difficulty breathing. His lungs were clear and it
is believed now that the poor tone and breathing difficulty were related to
severe malnutrition. He still breathes very loudly (sturdier) when alert,
but is quiet when feeding or when sleeping. Many diagnostic tests were run
and none have been abnormal once he was hydrated and gaining weight. They
were particularly worried about SAM or some other type of muscular
dystrophy. They are still waiting on genetic testing and metabolic screen
test results. They began supplementing with Nutramagen which the baby
wouldn't drink, then they switched to several others and settled on
Carnation Good Start mixed to 24 calories/oz. He had difficulty feeding
from the bottle but exhibited the same problem as at the breast of
appearing to have a good feed, but actually having very low intake. He
drinks well and seems to swallow a lot, but it must be air and spit. He was
able to gain well on that when alternated with breastfeeding. He gained
almost a pound in 10 days and they felt it was mostly rehydration. He is
much more alert and his stool volume has increased significantly. At no
time was anyone other than me concerned about his continuous since birth
kelly green poops. They had some concern about Cystic Fibrosis, two sweat
tests were attempted but no sweat was produced. He is still holding his
head back to breath and breathing with an awkward open mouth. No cardiac
tests were done other than a monitor attached to his skin. He is smiling
and seems more comfortable and content. The only problem the health care
providers were able to identify was an abnormality on the barium swallow of
a pocket of air that seemed to have the effect of reducing suction in the
same way a cleft would.

We had another consult yesterday and I watched him nurse and feed from the
bottle. He sucks hard but ineffectively and tires more easily than I would
expect. We tried sitting him up and using the Dancer's hand position, at
first he was reluctant to suck and swallow being held this way, when mom
released the pressure he would begin sucking vigorously again. After
several tries, he started sucking with the pressure in place and seemed
content. I felt the sucking and swallowing was more effective. I did not
have a scale and was unable to do test weighs. We then offered the bottle
which he took hungrily, sucking vigorously, but very little milk came out
again. We transferred the milk to a supplementer, slipped the large size
tube in with the breast, attached the baby and let him nurse. The
supplementer was placed high on mom's shoulder and the other tube was
unhooked to provide maximum flow. The baby took right to it and sucked
well. Mom added the pressure from the Dancer's hand position and he was
off. He took about 1 1/2 ounces of supplement and mom had 4 or 5 obvious
let downs (dripping on other side) with much deep swallowing with those let
downs. Baby was totally relaxed and content after the feed. Mom reported
that he had never had such a good feeding. She was thrilled and felt the
supplementer was a good solution for them. I recommended offering as much
supplement as the doctor had ordered in the supplementer with instructions
to switch back to the bottle if he didn't seem satisfied. She felt she
might still offer him a bedtime bottle. I also recommended that he be
weighed twice a week this week and if he gained well after both weights
that she switch to weekly for 3 weeks and then biweekly for six weeks. I
still feel he is at high risk for inadequate intake. His health care
providers recommended follow-up at three weeks with no weight checks in
between. They will have all test results at that time. In addition, I
strongly recommended seeing a speech pathologist and also suggested the
possibility of a chiropractic appointment and a craniosacral massage
appointment. She was open to all ideas. This family is very religious and
has been requesting prayer for their baby. The first few days he was in the
hospital, many people praying felt that he would not live. On the fourth
day several different unrelated prayers reported feeling a burden for this
child's life lifted. The family believes he had a serious illness that has
now been resolved through healing. They will continue to follow up on all
medical recommendations, they didn't seem upset about the need to
supplement and were thrilled to have a healthier, gaining baby. It has been
a joy to work with this family. The bottom line seems at this time to have
been muscle wasting due to serious malnutrition related to anatomically
caused feeding difficulties. I'll keep you posted if there is anything new.
I am interested in your comments and apologize for the length of this post.
Cathy Liles

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