October 11- After
a 10 day fast, Sarah finally got to start eating today. For her first feeding, she got to eat a
whopping 5 cc, but by the third feeding, she was up to 11 cc. She knocked that one out in less than 2
minutes. She seems to be enjoying the
opportunity to eat again. Hopefully her
stomach and digestive tract will handle it well. It’s been encouraging so far.
October 12- Sarah
was up to 20 cc of formula tonight. She
took it very quickly. Everything still
looks good and she’s tolerating her formula really well. Her great-grandparents visited her today.
October 13- Not
much of a change today. They are really
bringing her up slowly. She’s only up to
24 cc today. She must be pretty hungry
because it really doesn’t take her very long to get it down. I know she’d take a lot more, but they want
to make sure it doesn’t overload her intestines and cause a new NEC episode.
October 14- Sarah
continues to make progress. It’s not
fast progress, but it is progress. She drank
28 cc tonight and will go up to 32 cc at the next feeding. She’ll have to stay at 32 cc for a while. Unfortunately, she’s back in heart failure
again. So, the nose cannula is on again
and she’s receiving oxygen to help her through it. They upped her Lasix dose (diuretic) to try
and clear it up. I suppose we should be
really concerned every time she goes into heart failure, but she’s been through
it enough times already that it seems more like an annoyance rather than a
serious situation. They give her more
medicine and it gets better. It’s hard
to take it seriously, even though it really is serious, I guess.
October 15- We
didn’t learn anything major today. Sarah
had an ultrasound today, but the cardiology team didn’t report any results to
anyone. Maybe that means there was
nothing to report, or that we won’t find out anything until tomorrow. That’s the worst part about this whole ordeal
– not always being kept informed. Sarah is
now eating 34 cc. The next increase will
be to 38 cc. She lost 30 grams (4 oz.),
which we were told is a good thing.
She’s now at 3270 grams (7 lbs. 3.35 oz.).
October 16- The
Cardiologists decided that it was time to do a heart catheterization on
Sarah. It involves passing a thin
flexible tube (catheter) into the right or left side of the heart. The catheter is inserted into a vein or
artery in the groin or arm. They use
x-rays to guide it to the heart. It
measures pressure and blood flow in and around the heart. It is also used to inject a dye or contrast
that can easily show up on x-ray. That
is used to determine the path the blood is taking as it is pumped through and
from the heart. They decided the
catheterization is necessary because she’s just not responding the way she
should with just an AV canal. They
scheduled it for tomorrow. Sarah’s
brother and sister visited today and helped me feed Sarah her 43 cc of
formula. I also gave Sarah a Priesthood blessing
in preparation for tomorrow’s procedure.
October 17- Sarah
went through the procedure without any problems. She was in a pretty deep sleep when we got
there. She didn’t wake up enough to eat until
after the shift change, which was just after 8:00 p.m. Her formula allotment was up to 53 cc (1.8
oz.) and she ate it very well. She’s
tolerating it really well so far. We got
the initial results of the cath procedure tonight.
·
No high blood pressure in the lungs (good), just
a lot of extra blood.
·
The ductus is open significantly and is mixing
blood (not so good).
·
The superior and inferior vena cava (blue blood
(oxygen depleted)) veins are draining into both the left and right atrium. It should only be emptying into the right
atrium.
·
The pulmonary vein (red blood from lungs) drains
into both left and right atriums. This
was a surprise finding. It should all
empty into the left atrium. This problem
along with the vena cava returns will complicate any repair.
·
There is a small hole in the ventricular septum.
It wasn’t of much concern. They aren’t
too difficult to fix (although it does often require open heart surgery), but
they usually repair themselves when they are that small.
·
Only a single atrium. It looks like two separate atriums, a left
and a right, but there is no septum or wall between them. That makes it a common atrium, meaning that
the blue blood mixes with the red blood, lowering the overall oxygen content of
the blood getting pumped out to the body.
The fact that the plumbing is apparently doubled up tends to indicate
that she actually has two left atriums and no right atrium. This is one of the symptoms of polysplenia
syndrome (many spleens). They didn’t
actually look for multiple spleens, but the fact that she may have two left
atriums means that she most likely does have multiple spleens. That part doesn’t really matter though. It would explain why the red blood from the
lungs is draining into both the left and right atriums – two left atriums means
two returns. It doesn’t totally explain
why the blue blood returns are draining into both atriums, unless that is also
part of the polysplenia syndrome. The
cardiologist wasn’t really sure how or if all of this could be repaired. Not only would a septum or wall need to be
constructed between the two atriums to eliminate the blood mixing, but most of
the atrial veins would have to somehow be rerouted to their normal
positions. He wasn’t sure if that was
possible.
·
The aortic valve is leaky. This is the valve that goes between the left
ventricle and the aorta which carries the red blood to the body. After the ventricle pumps, the valve should
close and not allow blood in the aorta to go back into the ventricle. The faulty valve, however, allows this to
happen. Normal pressure in the aorta is
around 90/60. In Sarah’s case, it’s more
like 90/30. This is a very serious
problem and nothing can be done about it right now. This defect is life threatening due to her
size. They didn’t say what could be done
if she were bigger.
We were reminded that these
were just preliminary results and that further consultation amongst the
Cardiology team would occur over the next few days. They promised to keep us posted. We knew that she had heart problems, but
nothing like this even crossed our minds.
Apparently, it hadn’t crossed the doctor’s minds either, as they truly
seemed surprised by some of the findings.
At this point, we really don’t know what to think about Sarah’s long
term prognosis. It really doesn’t sound
too promising right now. Since these are
just preliminary results, maybe they’re wrong.
I hope they’re wrong.
October 18- We
didn’t get to visit too long tonight. Another
cardiologist talked to us about yesterday’s procedure. He believes that the only logical choice for
now is to surgically tie off the PDA (open ductus) in order to stop the blood
mixing. He also believes that the aortic
valve leak is only mild to moderate. He
thinks the initial reading was inaccurate, but only time would tell for
sure. He also thinks there’s a chance
that the PDA surgery will help. He’s
also not convinced that the pulmonary (red blood from the lungs) drainage is
draining into the right atrium. He said
that another catheterization will be required later on to verify it. The PDA surgery will occur sometime next
week.
Sarah had blood in one of her stool samples tonight, so
they took x-rays and made further stool checks.
They couldn’t find anything wrong, but they’ll continue to watch her,
just in case. I hope she’s okay. We really don’t need any more setbacks right
now.
October 19- Sarah
has been doing well all day. No new NEC
scares, but she’s still on oxygen. She’s
been eating about 60 cc (2 oz.) per feeding.
We tried to find out when her PDA surgery is scheduled for, but no one
seems to know the answer.
October 20- Sarah
was doing fine today. She gained another
20 grams (0.7 oz.). A KTVX, Channel 4
news team was doing a story on the Newborn Intensive Care Unit (NICU) today and
they interviewed Sarah’s nurse while she was feeding Sarah. They thought Sarah was cute. We were told that they would let us know when
the program would be aired. There is no
guarantee that they’ll use the footage they took of her, but her nurse said it
was a pretty substantial interview and since they thought Sarah was so cute,
she was convinced that she would make the cut.
We found out that her surgery is scheduled 3 days from now (Tuesday). One of the Pediatric Intensive Care Unit
(PICU) nurses showed us around the PICU and explained where Sarah will be
following her surgery. No more NICU
after Tuesday.
October 21- My
mother and father-in-law came to visit Sarah today. Since they were here, I had my father-in-law
help me give Sarah a Priesthood blessing for her surgery on Tuesday. I can’t think of anyone I’d rather have help
me give her a blessing. He has a lot of
faith, and that’s exactly what Sarah needs right now. She was awake for quite a while tonight. She’s been eating 60 cc at each feeding,
which still doesn’t seem like very much to me.
But, she seems to be gaining weight with it and she’s not having any
more bowel problems, so I guess it’s enough.
She’s still on oxygen, but she looks really good.
October 22- My
mother came by to visit Sarah today. She
got to feed her half of her bottle.
Sarah has a hard time eating all 60 cc at each feeding. She’s just been too tired. We met with the anesthesiologist today and he
explained the procedure as he understood it and explained the standard
risks. I also talked to the surgeon on
the phone. He’s not convinced the
surgery will help her condition all that much.
That’s not exactly what I wanted to hear, but at least he was being
honest. What he fails to understand is
that Sarah received a blessing by two worthy priesthood holders who called upon
the Lord to have this surgery be successful.
There is an abundance of faith and prayers by family members and others
in Sarah’s behalf, so how could it not help.
The surgeon is wrong. It will
help. It’s on for tomorrow around noon.
