Rose,
On February 18th we had our next appointment with Dr.
Chang. I was very excited for this appointment. I had been able to feel you
start moving since our last appointment with him, and took this to be a good
sign. I figured this meant you were getting bigger and stronger and doing well.
Dad and Grandma Giles came and picked me up from work again for
this appointment.
When we saw the ultrasound technician she did some standard
measurements to see how you were doing. You were almost 2 lbs! I couldn’t
believe how big you are getting! She said that she wasn’t sure why Dr. Chang
had put Heterotaxy in his notes at the last appointment, because heterotaxy
generally means that your digestive organs are on the opposite side of where
they should be, and that everything was currently in the correct positions.
That gave me a good amount of hope. She took a lot of pictures for us! So many
sweet pictures of your face. And I saw you yawn which was just the cutest thing
I’ve ever seen!
Dr. Chang came in and started looking at your heart again. He
kept asking for video clips of what we were looking at. He said he wanted to
review them with some other surgeons. He drew us another picture, which I sure
appreciate. I understand so much more when I can see what he is talking about.
He said that your pulmonary veins, which they weren’t able to see last visit,
were there. But that they did have a small hole in them. He said that there was
something wrong with the right ventricle walls, causing that chamber to not
pump correctly. It didn’t seem to be pumping so much as sloshing. But the
concern Dr. Chang brought up that seemed most severe is that your pulmonary
valve (which was bulbous before) was now double the size it should be. Which as
your lungs are developing id going to cause it to press on your tracheal and
bronchial. Grandma asked if these things looked like they could be corrected
with surgery, Dr. Chang thought that the problems with your heart had a
possibility of being correctable, but that if the pulmonary valve pressed on
your tracheal and bronchial while they were developing, that the damage from
that wouldn’t be able to be repaired. He showed more concern that you may not
make it full term than at your last appointment.
He let us know he wanted to see us again in a month to see how
things were looking. As Dr. Chang left the ultrasound technician said she
needed to go get Dr. Lee and have him talk to us, and that she also needed to
let him know that my amniotic fluid was measuring high at this appointment.
Which could be caused by a majority of things; your heart problem, and
chromosome abnormality, gestational diabetes. She wasn’t sure, just needed to
document it.
Dr. Lee came in and talked to us shortly after she left. He told
me he didn’t want me to feel like I wasn’t being met with often enough. That
the reason my next appointment was so far off was that even if they were able
to see things worsening, that you are small enough still that they wouldn’t be
able to do anything for you. At your next appointment I will be 31 weeks, and
they should be able to have a better game plan at that point.
This was a tougher appointment than I expected it would be. Dr.
Chang didn’t seem as optimistic about your situation as I had hoped. I hadn’t
been expecting a miracle, but I was hoping that at least things wouldn’t be
worse.
I’m grateful for the continued support and prayers of everyone
who loves us. I can’t imagine not having the peace and comfort that I’ve had.
I’m so thankful for the knowledge I have of the gospel. Knowing that no matter
what happens, Heavenly Father loves you even more than I do. And He has a plan
for you. Whether or not that plan is the same as mine. As tough as this
situation is, I’m glad to have that knowledge, even when it is hard to see with
that perspective.
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