September 23-
Sarah was breathing faster today, but she didn’t require as much oxygen as she
did yesterday. They took more X-rays today
and found that there were still some problems, although they didn’t elaborate. They’ve scheduled another heart ultrasound for
her tomorrow. Now they’re thinking the ductus
didn’t close. Too many doctors with too
many opinions. She was too tired to eat
more than 10 cc. Most of the feedings
were by tube today.
September 24- Sarah
must have gotten plenty of sleep last night, because she was wide awake the
whole time we were at the hospital. She was
hungry too. She ate 35 cc all by herself
from the bottle. They take chest X-rays
of her every morning. Her heart and
lungs look worse today. The ultrasound clearly showed that the ductus is still
open. No more guessing. The doctors don’t know yet what they’re going
to do next, if anything. I don’t know if
that’s good news or bad news. Maybe
they’ll know more tomorrow. They did
start her on Lasix, a diuretic that is used to reduce the fluid buildup in her
body, specifically around the heart and lungs.
September 25- Sarah
was moved to an isolation room today to make room for another baby. Now she’s all by herself. That’s kind of nice. We have a lot more privacy. There are a lot of really sick kids
here. They took her off the oxygen today. That’s a good sign. She’s eating up to 45 cc now so she can gain
some weight. They started her on Digoxin
today. It’s a medication used to help the
heart pump better. It’s in a liquid
form, so she gets it from a dropper. Still
no word on what’s next. I get the
impression that they just want to observe her for a while to see what
happens. Maybe they’re hoping that
she’ll just stabilize and they won’t have to do anything. That would be nice.
September 26- One
of the babies in the main room passed away during the night. That was really sad news. We’d met the parents a week ago, and they had
a lot of hope for their child. It was
kind of a shock when we heard the news.
It made me realize just how blessed we really were, despite all of
Sarah’s problems. The death opened up a
space in the main room, so Sarah was moved out of her isolation room back to
the main room. They put her back on
oxygen again. Today’s X-rays showed some
improvement. They’ve upped her formula
to 50 cc and she’s been tolerating it well.
Her maternal grandmother came by to visit and was able to feed her at 3
pm. Mom was able to feed her again at 6
pm. She ate very well. While changing her diaper tonight, I noticed
a large lump on her lower back. It was
soft and squishy and about an inch and a half to two inches in diameter. It wasn’t very tall, but it definitely wasn’t
normal. I asked the nurse if she knew
anything about it. She couldn’t find
anything in the charts about it and had never really noticed it herself. She said that she would make sure the doctors
knew about it. Still no word on future
plans. More waiting and watching. It’s frustrating, but we just need to be
patient. We want her well, so if it
means we need to wait, we’ll wait.
September 27- It
was my oldest daughter’s birthday today, so I decided to stay home after work
and spend some time with her and my son.
They haven’t seen much of us lately and they are really missing us. I
figured Sarah wouldn’t mind, especially since it would give mom some alone time
with her. Not much has changed from
yesterday. Today’s X-ray looked about
the same or maybe slightly better than yesterday’s. No news on her back yet, or anything else for
that matter.
September 28- Sarah
was off the oxygen today and doing pretty well without it. She still couldn’t eat everything on her own,
so some of her feedings today were through the tube. The X-rays of her lower back showed that she
has an undeveloped lower spine. We
didn’t get any details about it, so we don’t know if that is significant or
not. It doesn’t really explain the lump
either. We didn’t get to talk to the doctor about any of this. It was the nurse
that filled us in. She told us that a
neurosurgeon has been requested to look at her.
That should happen sometime tomorrow.
September 29- It’s
been two days now since Sarah has been off of oxygen. Maybe that means her heart is doing better
with the medication. The nurse told us
that she had eaten 300 cc out of 400 cc all by herself yesterday. She was pretty tired today. The thought was that when we take Sarah home,
she may still need to be fed through the tube, so we had to learn how to put
the naso-tube down her nose and into her stomach. I didn’t think it was too hard. Mom on the other hand still needs some practice. We also started CPR training today. It’s mandatory for parents with kids in the
NICU. It’s all in anticipation of taking
her home soon. Sarah’s neonatal doctor filled
us in on her spinal problems. Most of
her sacrum is missing (sacral agenesis).
That means, she doesn’t have a tail bone. A common side effect of this condition is the
inability to walk normally, if at all.
They won’t really know if that will be a problem until she’s much older
and starts to walk, if she can. It can
also affect the nerve bundles that exit the spine in that area. The lump on her back turned out to be a
lipoma, or fatty tissue tumor. It’s not
cancerous and is of no major concern.
Unfortunately, the lipoma got in the way when her spine was
forming. Apparently, the spine takes
time to close up during development. It
kind of starts out like a stalk of celery, and then over time, it grows
together to form a tube around the spinal cord.
During that process, part of the lipoma got caught inside as the spine
continued to close up. There is a hole
in the lumbar area where the lipoma is.
The concern is that the portion of the lipoma that is caught in the
spine is pressing against the spinal cord.
They call that spinal cord tethering, because the cord is stuck, or
tethered, and can’t move up the spine as she grows. That can cause serious nerve damage and major
complications. They will need to do a
Magnetic Resonance Image (MRI) before they can verify that it really is
tethered, but they are pretty certain that it is. It sounds like she will require surgery on
her spine. Thankfully, it can wait for a
month or two. The other side effect of
no sacrum and a tethered cord are bladder and rectum control, or lack thereof. Again, it’s still too early to know if she
will have problems, but the neurosurgeon is pretty confident that things won’t
be normal. I asked the doctor why this
problem wasn’t discovered before and he said that it was most likely because
her heart problems were of such a concern that no one was really worried about
anything else. If I hadn’t noticed the
lump, it might have gone undiagnosed until it was too late. I don’t blame the doctors or nurses. They’ve been doing a great job. I’m just grateful that my eyes were opened to
the problem. I don’t think it was an
accident. I know the Lord is watching
out for our Sarah.
September 30- No
real changes to speak of today. Sarah is
still off oxygen and doing pretty well without it. She only ate 15 cc out of 50 cc while we were
here. Hopefully she eats more when we’re
not here. We finished up our CPR
training today. There wasn’t much to
finish. Now, we’re qualified to do CPR
on Sarah if it becomes necessary. We’ve
done our part. Now the hospital just
needs to release her so we can take her home.
October 1- Got a
call at 1:30 a.m. from the hospital.
That’s not really the way you want to be woken up. A call at that time of the morning is never a
good one. The nurse reported that Sarah
had blood in her stool and they needed permission to give her a spinal and
bladder tap. I’d never heard of a
bladder tap before. They had taken an
X-ray and it looked very suspicious. I
gave permission, then struggled to sleep the rest of the night. They took another X-ray later in the morning which
verified that she had Necrotizing Enterocolitis or NEC for short. NEC is primarily seen in premature babies,
although it is not exclusive to them. NEC
is the inflammation and death of intestinal tissue that may involve just the
lining of the intestine or the entire thickness of the intestine. It shows up on X-rays as gas bubbles in the
intestinal tissue. In severe cases, the
affected intestine has to be cut out, because it is literally dead. We were aware that this would be a
possibility, but since she had been eating for so long, we really thought we
were past that. Sarah’s older sister was
premature and we learned all about this complication with her. The doctor didn’t think it looked too severe
yet. He also thinks that her heart
problems may have contributed to the problem.
They want to make sure that no excess gas gets into her bowels, because
that could cause them to perforate (tear open), and that would be really bad
news. So, unfortunately for Sarah, it
means that she can’t eat for the next 10 days.
She’ll also have to be on antibiotics for that period of time as
well. That means it will be at least another
10 days before we can take her home, assuming it doesn’t get worse and nothing
else unexpected shows up. On the bright
side, everything else looks good.
October 2- Because
Sarah won’t be eating for a while, they started her on a vitamin fortified IV which also included some fats. It won’t fill her tummy, but her body won’t
starve. They also put in an Anderson
tube, which is a stomach tube that is placed through the mouth. It is attached to suction device that
provides periodic suction. They have to
keep everything out of her stomach, including the gastric juices, so that
nothing will pass through to the intestines.
This gives them a chance to rest and reduce any risk of gas buildup. She slept the whole time we were there. She’s still off oxygen and in general, doing
pretty well. Nothing has really changed
since yesterday.
October 3- We
were kind of surprised when we saw Sarah today with an IV in her neck. They explained that the IV in her arm would
have to be replaced every couple of days because the veins just don’t last that
long before they collapse. That’s not a
problem when they use the neck. It was
the only way they could keep getting her IV solution to her easily. My father came by to visit, so I took
advantage of the situation to give Sarah another Priesthood blessing, specifically
to heal up the NEC. She was pretty fussy
until we finally started holding and rocking her. I always worry that if we aren’t careful,
we’ll end up pulling the IV out. It’s
pretty taped up, so it would probably be difficult to do, but it still makes
you extra cautious. She looks pretty
good. The neck line really doesn’t seem
to bother her. It probably did when they
put it in though. She occasionally needs
a breath of oxygen, but at least it’s not constant.
October 4- Not
much change today. Sarah has gained some
weight, a whole 40 grams (1.4 oz). It
doesn’t seem all that significant until you remember that she’s not eating
anything. If she doesn’t lose it again,
that will be good. We rocked her for a
while and she seemed to enjoy it. My mother came by to visit with her
today. Besides parents and siblings,
grandparents are the only ones allowed to come and visit. At least, that’s the policy. I don’t know how strict they are on enforcing
that.
October 5- Nothing
new today. It really is just a waiting game now. The test for blood in Sarah’s stool was
negative today. Since she’s not eating,
I’m not really sure how they are getting a stool sample. They wouldn’t be coming on any kind of
frequent basis, so I guess they aren’t going to be able to test it often. But, no blood is a good sign. Sarah’s other Grandma, as well as her Aunt,
visited today. It’s really nice to have
family close by. They have been tending
the other kids for us when we come to the hospital. They’ve been a tremendous support.
October 6- Blood
test in the stool was negative again today.
The X-ray of her intestine also showed improvement. Sarah did gain too much weight though. I guess that means she needs to go on a
diet. Less than a month old and she
already has to worry about dieting. They
really didn’t say what the solution was or how much she actually gained. Her lung X-rays showed some congestion. Her Lasix dose was upped to try and get rid
of the excess fluids. She seems to be
doing really good. She may be able to
get her stomach tube out by tomorrow. She
was awake for our entire visit.
October 7- They
removed the suction from her stomach tube. The tube is still in, but now it’s just using
gravitation to keep the stomach pumped out.
That’s a step in the right direction.
Her NEC is getting better. No
mention of the fluid buildup in her heart and lungs, so the Lasix must be doing
its job. She continues to do well. She was awake again for our entire visit. Her maternal grandparents visited again today
and brought Sarah’s great grandmother along as well. She’s had a lot of visitors this week.
October 8- Sarah
is still doing really well. She had her
MRI and Voiding Cysto-Urethrogram (VCUG) tests
today. The MRI was for her spine and the
VCUG was for her bladder and kidney. The
VCUG test uses a catheter to fill the bladder with a contrasting agent. X-rays are then taken to determine the size
of the bladder and urethra as well as whether or not there is any reflux – a
condition where urine from the bladder goes up to the kidneys. We’ll know the results on the 10th. She was awake for most of our visit. Only another day and a half of the drainage
tube.
October 9- Sarah
finally got the Anderson tube out of her stomach, a day earlier than we
expected. She’s been acting very hungry
and sucking very hard. If everything
looks good tomorrow, she may be able to start eating again. We’re very optimistic, but not surprised that
she’s doing so well. That’s the power of
good doctors, good medication, and most importantly, the Priesthood. She pretty much slept most of the time we were
there tonight. That’s okay though. That probably keeps her mind off of how
hungry she is.
October 10- Sarah
finished up all her antibiotics today. Her
blood test showed that her red blood cell count was down to 30. It should be 45, so that’s a pretty
significant drop. They had to give her a
blood transfusion to get her count back up.
This was to hopefully prevent a recurrence of NEC. They didn’t say what could have caused
this. Normally it’s because of internal
bleeding, so maybe it’s because of the bleeding in her intestine caused by the
NEC. That’s just my guess though. She did look more white than pink. We got to meet with all the doctors
today. The MRI showed that her spinal
cord is definitely tethered and will require surgery whenever her heart is
stable enough. The VCUG test showed that
there are possible bladder problems, but nothing serious. They really didn’t go into any more
details. We will probably have to wait
until she’s a little older before we learn too much more about that. The great news is that they hope to discharge
her in one week. Finally, the end is in
sight. It was a very encouraging night.
