From Jonny:
The last week has been crazy busy/stressful for us. Now that the laser surgery has been
performed, we are in a ‘wait and see’ mode to see how the boys respond. The main concern is to monitor the
function of their hearts and the amounts of fluid in their bodies (especially
in Baby B: the recipient twin). We
will be on a schedule where we receive an ultrasound every week, and an
echocardiogram every other week.
One of our surgeons cautioned us that improvements would most likely
occur over a 4-8 week period (we are now 17 days after surgery).
So…on to the appointments we had Thursday. The amount of fluid (hydrops) in Baby
B’s body has decreased. He still
has a significant amount of fluid in his stomach, but he no longer has
noticeable fluid surrounding his heart, lungs, or skin. Improvement in cardiac function is very
difficult to measure, because some of it is very subjective (descriptive). One of the few objective measurements
(using numbers/data) that they use is heart size. Normally functioning hearts take up about 30% or less of the
abdomen. When a heart is very
sick, it increases in size because it has trouble keeping up normal heart
function. At the time of surgery,
Baby B’s heart made up 43% of the area of the abdomen. On Thursday, the pediatric cardiologist
reported that the heart had decreased to only 38% (great news!). And even though subjective reports from
two different doctors (Cincinnati vs. St Louis) are very hard to compare, he
rated Baby B’s heart problems as moderate (which is greatly improved from the
grading of ‘severe problems’ at the time of surgery!). And Baby A continues to do abnormally
well considering the circumstances, and the pediatric cardiologist rated his
heart as nearly normal!
We are trying to be cautiously optimistic. We know that we still have a very long
road ahead. Katrina will be on
bedrest for the duration of the pregnancy, and there is still a very likely
possibility of premature births and NICU stays. She is currently at 22 weeks, and we are hoping to make it
to 30-32 weeks (that’s one of the goals our team at Cincinnati set for
us). But the boys are doing about
as well as could be imagined at this point in the process; based upon how
severe their problems were at the time of surgery and how close we were to
losing them. We continue to be
incredibly thankful that the entire team at Cincinnati Children’s came back in
from their homes to perform surgery just a little before midnight.
On a side note, this has been one of the most stressful
weeks of our lives. Due to the way
that the schedule worked out, after our doctor appointments on Thursday, we
actually closed on our new house later that day, and moved in yesterday
(Saturday). We are incredibly
excited to have a home that is big enough for our growing family, and also excited that I am only 5 minutes away from
work now.
We feel incredibly blessed by the outpouring of help and
concern from friends and family. I
can assure you that we are incredibly thankful, even if we had not had a chance
to respond or thank you yet.
Please continue to hold Katrina and the boys in you prayers.
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