The was a while ago, but I posted May 9 2002 about a baby who was getting a
trach at 3 weeks of age.  I wanted to give a follow up just to let you all
know of the wonderful outcome!
I worked very closely with this mother and baby over the first year.  There
are many issues that would require too much detail to explain so I am going
to be brief.  There were times... many times... that I saw them 3 times a
week.  We had to really keep track of the baby's intake and weight gain and
our scale was the one that was easiest to have consistent, frequent access
to.  Our visits most often involved weight checks and revised feeding plans
but they also involved counseling and support.... lots and lots of support.
The mother, Lisa, one of my fellow lactation consultants, Jodi, and I became
very close, ( Jodi and I were the 2 most often working with them.
   He was exclusively breast fed (at the breast, he did not do well with
bottles nor did he do well when supplemental nursers were attempted for
increased volume...again very long story) When solids were added ( at 7
months) mom added extra calories where she could into his diet with the
foods that he ate. At the age of  9 months it was discovered, thanks to
mom's persistence with the doctors that something was not right, he had
malrotation of the intestines.  With the corrective surgery they placed a
g-tube to increase his intake and calories.  His breastfeeding intake was
always adequate and above but he had an increased caloric need because he
burned extra calories due to his medical condition.  Mom continued to pump
milk for the tube feedings and when she could not keep up with his need
between all she had to do for his nursings and his medical needs, she got
banked milk (medicaid with Dr. order).
  Today Joel is a thriving, 22 month old, weighing over 20 pounds.  He still
nurses... on rare occasion, in fact there are sometimes days between when he
nurses or not. He is very busy with the activities of a 22 month old.    Mom
still gives banked milk in his feeding tube along with any milk she
expresses.  ( he has an older brother age 7 who is autistic in addition to
everything else she has going on, she does not often have time to pump and
because of that she has very little supply)   In December or 2003 Joel, went
to a hospital in Cincinnati Ohio where they preformed a surgery to tie back
one side of the vocal chords.  He returned to Cincinnati 2 weeks ago for
them to trial capping his trach to see how he would do.  He did so well that
he was decannulated on January 25, 2004.  Joel has been doing great since.
   Mom feels very strongly that breastfeeding him played an instrumental
role in how well he did, there were times that if it had not been for breast
feeding Joel would not have taken anything and he really could not afford to
lose weight.  And I could go on and on about the various things that
happened that she and I both believe were safer/better/improved because he
was breastfed.  I am also happy to add that I am blessed to count Lisa as
one of my closest friends, our families now are very close, spending
weekends together.  We often laugh about the first time we met, (because we
can do that now), when she sat in her hospital room in tears, afraid that
she had no milk for her baby who was being transferred to a Neonatal
Intensive Care hospital and ... after asking her if it was alright that I
touch her breast... I showed her how to hand express... not many girlfriends
have that kind of first memory!

Pam Price IBCLC, CBE
Lactation Services Coordinator
Women's Health
Trident Health System
9330 Medical Plaza Drive
Charleston, S.C. 29406
(843) 824-5013 office
(843) 728-9640 pager

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