October 23- We
came to the hospital fasting on Sarah’s behalf. We want this surgery to be successful and
fasting is our way of showing the Lord that we have faith that the surgery will
be successful. The surgery started at
2:30 p.m. It didn’t take too long and we
were told that it went very well. The
ductus is now tied off. There were no
complications at all, unless you call a broken rib a complication. They told us that was normal and that there
really was no way to avoid it. In order
to avoid cracking the rib cage (cutting through the sternum like they do in a regular
open-heart surgery), they just try to squeeze between a couple of ribs. Babies
are so small, it’s almost impossible to do it without cracking or breaking a
rib. They heal quickly, or so they said.
The operating room was set up with all
the equipment necessary to do a regular open-heart surgery. I guess they want
to be prepared in case something goes wrong.
While she was in there, they put a second catheter into her neck (right
side) as well as an arterial catheter cut into her left wrist. We’re not really sure why they needed a
second neck line since the one she already has on the left side seems to be
working just fine. The arterial line is
needed to test blood gases and pressures. She also has a chest tube to drain off any
blood and other fluids as a result of the surgery. Because the anesthesia has a tendency to slow
down or stop breathing, they kept her on the ventilator (intubated) until she
wakes up fully and is no longer under the effects of the anesthesia.
It’s easier on her too because she doesn’t
have to work hard to breath. They don’t
expect her to wake up until tomorrow.
I’m grateful the surgery went well, but at the same time, I feel bad
because I know she’s going to be in a lot of pain once she wakes up. No baby should have to go through that. Fortunately, she’ll never remember any of it
in a month or two, or less if she’s lucky.
October 24-
Sarah’s chest tube was no longer draining, so they removed it this
morning. Her red blood cell count was
pretty low, so they gave her a blood transfusion. They never said that she lost a lot of blood
during the surgery, so I’m not sure why her count is so low. With all the stories about HIV tainted blood
that we’ve heard lately, I was concerned about her receiving blood that wasn’t
donated by us. They assured us that the
blood used at that hospital in particular, is given by specific donors that
must meet very specific criteria. It
does not come from random donors. That
made me feel a little better.
They still don’t want her trying to breathe on her own, so
the ventilator is still in. I guess that
also helps reduce some of the pain she would experience if she had to breathe
on her own. With a big ventilator tube
down her throat, she was not going to be eating anything from a bottle, so she
got her 8 cc of formula through the nose tube.
She’s very sensitive to touch and sound even though she’s still pretty
groggy and not completely alert yet. She
seemed to be experiencing a lot of pain tonight while we visited. She was given some morphine and that seemed
to help. It’s really hard for us to see
her in so much pain.
October 25- Although
it’s supposed to last longer than a regular I.V. line, Sarah’s arterial line
had to be removed from her wrist because it was starting to turn red. They wanted to put it in her foot, but they
couldn’t get it in. I’m sure the effort
was no fun for Sarah. I’m glad we
weren’t here to witness it. She was wide
awake and more alert today. She only had
to have morphine twice, which indicates that she’s either not in as much pain
as before or that she’s tolerating it better.
She ate 15 cc by tube. She’s
definitely frustrated with the ventilator, but despite that, she looked a lot
better tonight. She did need another transfusion
today. That’s two transfusions in two
days. I hope that’s not a bad sign. No one indicated that it was a problem, so
we’re hoping that it’s par for the course.
October 26- Sarah
was not tolerating her feedings well today.
Her feeding tube is going straight to her stomach and that seems to be
where the problems are. They decided
that it would be better if they bypassed the stomach and went straight to the
intestines. Using barium and a
fluoroscope, they guided the feeding tube to the small intestine. Unfortunately, that doesn’t seem to be
working any better. I guess she’s just
going to have to live with it for now.
She’s also been very frustrated having to have the ventilator down her
throat. We ask every day when they are
going to pull it out. The surgery was on
Tuesday and now it’s Friday, so you would think that since she’s quite awake
now, they could pull it out. They really
didn’t want to do it until Monday, but her nurse has been pushing to have it
done quicker. She’s a great nurse. Maybe her efforts have finally paid off,
because it looks like it may happen tomorrow.
Sarah was very fussy tonight.
Sucking on her binky calmed her down quite a bit. If she could just get that ventilator out of
her throat, she’d be just fine.
October 27- It
finally happened this morning. The
ventilator tube was removed. It was easy
to see that Sarah was quite happy about it.
We were there when it happened and she handled it very well. They still aren’t letting her eat very much
and to make matters worse, none of the formula is getting to her stomach. It’s all going straight to her intestine, so
she never gets to feel as if she’s getting anything to eat. I know she’s getting the nutrition, just not
the benefit of feeling full or even having food in her stomach. She acts really hungry all the time, which is
also making her quite miserable, in my opinion.
She was pretty restless today and very hoarse. You can hardly hear her cry. It’s such a sad sound. The hardest part is not being able to comfort
her at all. We really haven’t been
allowed to hold her because of the ventilator.
Now that it’s out, we’re hoping that will change. She still needs oxygen, but instead of the
nose cannula, they have the oxygen box over her head. Maybe tomorrow. She really needs more than just a touch or
stroke.
October 28- The
oxygen box is gone and the nose cannula is in, so we got to hold Sarah all
night. They also removed the feeding
tube, which means she gets to eat on her own now. She still doesn’t get to eat too much yet,
only 18 cc tonight. She knocks that down
in just a couple of minutes and of course, it’s not enough for her. She wants more. We’re hoping that they can up the amount
quickly and that she’ll tolerate it well.
They detected an arrhythmia, which means her heart is beating
irregularly, so they stopped giving her the digoxin she’s been on. No need to have the heart beat stronger if
it’s not beating regularly. They think
it’s just temporary. She’s also getting
her voice back. She wasn’t as hoarse
tonight.
October 29- The
catheter they put in Sarah’s neck during surgery came out today. The other one is still in. They also took the nose cannula off. She is now on room air. She was up to 27 cc of formula and going up 3
cc every third feeding. That’s still
less than an ounce, but definitely an improvement. Sarah was so good this afternoon, not fussy
at all. She even smiled a lot. She has no idea how much that meant to us to
see her happy and content after everything she’s had to go through so far. I don’t know how much more she is going to have
to go through, but for tonight, we experienced a bit of heaven. We have all been truly blessed.
The resident doctor dropped by while we were there and said
that her x-rays looked really good and that the surgery was an overwhelming
success, despite the surgeon’s initial doubts.
He also made a pretty special comment; at least it was special to
me. He was very pleased with the
progress Sarah was making and indicated that all the doctors involved were
pleased. He said that he really wished he
could say that it was because of something he did, but he knew that it had
nothing to do with him. In the absence
of not knowing how or why things were suddenly going so well, he said he was
more than willing to take the credit, even though it was not his to take. He was very humble about it. I was very touched by his honesty and not
taking credit for something that God in his mercy had done. I don’t know if he is religious at all, but I
clearly got the sense that he knew there was a higher power at work; a power
that he didn’t seem to be able to explain, but acknowledged none the less. I wanted to tell him that it was because of
the Priesthood blessing she was given and the associated fasting that took
place in her behalf. That fact was
confirmed to me by the Spirit when I heard his statement. He left before I could gather my emotions and
say anything. I’m positive he sees a lot
of miracles with many of the critical babies he deals with every day.
October 30- No
big changes today. The nurses said that
Sarah was cooing and talking this morning.
That’s the up side for the nurses and the down side for us. Unfortunately, we can’t be with her all
day. We really can’t wait to get her
home. There is a blue aerosol can on the
stand next to her bed and according to the nurse, she really likes looking at it. We brought her a couple of stuffed animals to
look at, which she did gaze at once in a while.
She was up to 42 cc (1.4 oz.) of formula tonight, but that wasn’t good
enough for her. She wants more. She is one starved little girl.
October 31- Sarah
was a real fuss budget tonight for some reason. Since there are no more planned surgeries for a
while, they took out her remaining neck catheter. Maybe that’s why she’s so fussy. She’s up to 60 cc (2 oz.) of formula and is taking
every bit of it, quite quickly I might add.
She finally settled down some after we fed her. Her blood oxygen levels have dropped a bit,
so they had to put her back on oxygen.
They really want her to be as close to 90% saturation as possible. Her need to be on oxygen doesn’t seem to be a
concern, at least as far as getting her home.
They have no problem sending us home with oxygen.
November 1- Sarah
was off oxygen for part of the day, but was back on again tonight. She’s out of her bed and back in a crib. They had her dressed in pajamas and she
looked so cute. They kept her feedings at
60 cc per feeding today for some reason.
They also put her back on digoxin for her heart and are trying to
stabilize the dosage. Her X-rays look really
good and show that her heart is stable.
No heart failure at all. We still
haven’t heard any plans about when she might get to go home. Hopefully soon.
November 2- Sarah
was doing really well today and she looked really good too. She’s still on oxygen, but that really
doesn’t seem to be much of an issue anymore.
It would almost be strange if she weren’t on oxygen. She was awake for an hour of our visit and
really seemed to enjoy being talked to.
She’s still on a three hour feeding schedule, but they have moved her up
to 90 cc (3 oz.) if she wants it. She
wanted it tonight. Still no word on when
she might get to come home.
November 3- We
finally got some long awaited news this morning about Sarah’s release
date. They are really hoping to let her
leave in two days, Monday the 5th.
Sarah was hungry this morning and was allowed to take almost 4 oz. By afternoon, the good news of this morning
was being jeopardized, as always seems to be the case. Sarah started a bad case of diarrhea. They had to restrict her feedings to 65 cc. They are culturing the stool to see if it’s
some sort of infection. This may affect
her discharge on Monday. She was really sleepy
tonight.
November 4- Good
news! Sarah’s diarrhea was not quite as
bad today and she’s still scheduled to come home tomorrow. They increased her feeding limit slightly to
75 cc per feeding. It’s not enough for
her, but if it helps with the diarrhea, then that’s a good thing. Sarah’s probably not okay with it
though. I know she wants more. She was a very happy little girl today. The nurse sat us down before we left and
explained all about the medications she’d be going home on. She also explained the oxygen usage and how
we would keep the tanks coming. We just
need to call the medical supply place whenever we need a new tank and they’ll
bring one out.
November 5- We
had our first snow of the season today.
It wasn’t a big storm and it didn’t keep us from getting to the
hospital. Before they released her, they
pulled the last two stitches from her left wrist where the arterial line had
been. They set up the oxygen so that she
gets 0.25 liters per hour, then sent us home.
We’ve all been through a lot this past 8 weeks, but it’s been a great,
though hard at times, learning experience.
We’ve had to have a lot of faith and pray harder than we’ve probably
ever prayed. I hope we learned what we
were intended to learn. I suspect that
this is just the beginning of more to come, but hopefully this experience has
helped prepare us better for those times.
We are so grateful and elated to finally have our little baby home where
she belongs.
