To all:
Conner had his TWO WEEK checkup yesterday, December 4th. This was
the first time we were able to see, on paper, the FINAL details and
results from the ultrasound and echocardiogram that were performed in
Portland on September 29. We reviewed these documents with our
pediatrician yesterday and learned that these newer tests put to rest
some issues that had been raised in earlier ultrasounds performed
here in Bend on September 19 and September 27. Most notably, the
Sept. 27 ultrasound report had raised the possibility of a
'hypoplastic' left heart, a condition which really appeared to seal
Conner's fate. However, the September 29 ultrasound and
echocardiogram, it turns out, revealed no such condition and this
explains why Conner seems to be thriving at this point and also would
make it appear far LESS likely that he will leave us anytime soon.
On the other hand, a new POTENTIAL danger was brought to light and it
concerns his heart as well. The concern seems fairly remote at this
point, but one report says, in effect, that the 'ductus arteriosis'
is larger than normal. The ductus arteriosis is, to the best of my
understanding, a sort of bypass circuit that is only used when the
baby is in the womb. Its purpose is to bypass the pulmonary circuit
so that blood does NOT flow through the lungs. When a baby is born,
or shortly afterward, this bypass is supposed to close up, forcing
the blood to circulate through the lungs for oxygen. In Conner's
case, they say that since the ductus arteriosis is larger than
normal, it may not close sufficiently and this would result in
inadequate oxygenation of the blood. However, that is all
hypothetical and currently there is no reason to fear that the ductus
arteriosis has not fully closed.
Still present in the heart (as far as we know) is a ventricular
septal defect (hole between the ventricles) and so-called 'redundant
tissues' on the heart's valves, both of which may hinder the pumping
efficiency of the heart to some extent, but neither of which appears
at this point to be at all life-threatening, at least in the short
term. Also, the fact that the heart is in the right side of Conner's
chest cavity is interesting, but since all the plumbing is connected
properly it really is of very little concern.
He has gained 8.5 ounces in his two weeks and his behavior and
general health is, for all intents and purposes, normal. The only
CURRENT and outward manifestations of the trisomy 13 condition are
his physical defects, and of those, the only defect that really has
much of an impact on his life at this point is his bilateral cleft
lip and palate.
Regardless of this good news, we still realize that Conner is in
God's hands ultimately and we are grateful that we have this time to
spend with Conner, however long or short it may end up being.
Now
If we could just get some SLEEP!! (he, he!)
Thank you all for your prayers and support.
--
Pete Chadwell
1973 TR6
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