Our initial visit to Duke was when I was 32 weeks pregnant. When we headed down there we
thought that they were going to do the birth at 34 weeks, so the plan was for me to stay
down in Durham near the hospital (Duke Medical Center) and for Daddy to go home with our daughter.
This way if
I went into labor early I would be nearby instead of three and a half hours away. During our
visit the doctors decided that they didn't want to attempt the birth until 36 weeks. It wasn't
feasible for me to stay in Durham for a month before the birth, especially given that we expected
that I would have to stay at Duke with our son after the birth for some unknown amount of time.
The OB's assured me that there was no greater risk of pre-term labor with a hydrocephalus baby than
there was of a pregnancy with something like twins, so I shouldn't worry about it too much.
I knew that I was already having some pretty strong Braxton-Hicks contractions however, and I also
knew that the pregnancy was a lot more difficult than my last one and I was worried about whether or
not I could carry him that long. His head was huge and lodged just beneath
my ribcage with no chance that he could turn head down. My feet were so swollen it hurt to walk and
I had gained a lot more weight than I had with my daughter, presumably because of the need to
support the large head.
So the plan was that I would go home and have my cervix checked once a
week to make sure that nothing was progressing. We did this for one week and there was no
dialation and no effacement. The second week (week 34) I was 1 cm dialated, but still not effaced, which is
not unusual for that point if this isn't your first pregnancy. The Braxton-Hicks were driving
me crazy though. Because of the big head my skin was stretched pretty tight and it made them
that much more intense and they would come just a few minutes apart for hours at a time.
The OB put me on Procardia to try and slow them down so that I could get some sleep, but he still
didn't really feel that I was in immediate danger of going into labor. We made an appointment
for the following week to check my cervix one last time - I didn't make it to that appointment.
At 1:45am on September 25th I got up and went to the bathroom and then headed back to the couch.
I hadn't been able to sleep in a normal bed for sometime, but our wonderfully squishy couch was
comfortable enough that I could sink in and get at least some sleep. I laid back down and just as I
was about to drift off to sleep my water broke. After spending a few minutes convincing myself that
yes, my water had in fact broke even though it was a full week before we were supposed to head down
to Duke, I went upstairs and woke up my husband.
We made the 30 minute drive into the local emergency room and got admitted to their labor and
delivery department there while they made arrangements to get a helicopter to take me down to Duke.
Big kudos go to the L&D department at Roanoke Community Hospital for managing to somehow
arrange the helicopter ride despite not knowing anything about us when we walked through the door
and having to figure it all out on the spot. It takes about 35 minutes to get to Durham by
helicopter and while it would normally have been really cool to have my first helicopter ride, I
would not recommend doing it while in labor, strapped onto a hard stretcher. The team on the helicopter
were great though, and they got me there sane and in one piece.
Everything was ready and waiting at Duke when we got there. The OR was ready, the cord blood people
met us at the door and after all the IV's were put in and the forms were signed, we went right in.
Unfortunately there was not room for Daddy to ride in the helicopter too, and he missed the birth
by all of five minutes. I wish I had known he was that close because they would have waited, but
by that point it had been almost 7 hours since my water had broken and it was important for
the birth to be as soon as possible. Owen Christopher was born at exactly 9:00am on September 25th when
I was 35 weeks and 2 days pregnant.
He weighed 9 pounds 6 ounces. They put him on oxygen immediately after he was born
just as a precaution, but they took him off of it when they gave him his bath and he did so well
that he never needed to go back on it. Right from the start he was very alert and moved
around a lot. He responded to light and startled often, so the immediate fears about his
well-being were laid to rest. At least he didn't just lay there and do nothing.
So, despite the fact that he came even earlier than was planned and we had to take some extraordinary
measures to get down to Duke, everything turned out allright. The biggest bummer was that because
he was premature they took Owen out of the room immediately after he came out
and I didn't get to see him. He did
make one little cry on the way out of the room, as if to say "I'm here Mommy". Because I had to
have a spinal for the C-section, I wasn't allowed to go and see him in the NICU until it had worn
off. By the time I could move my legs and they let me out of recovery, moved me up to the regular
floor and OK'd me to go and see him, he was more than 6 hours old. I did get to see what he
looked like within an hour or so though, because Daddy was allowed to see him right away and he took
our digital camera with him. He took a few pictures and I got to see them on the little display on
the back of the camera while I was still in the recovery room.
Owen just after he was born
This picture was taken by the nurses in the NICU the day after Owen was born
At the Hospital
In the end Owen spent just under one month in the hospital before coming home. It was a very long
month, but I will try to share the most important parts. The first nine days were spent in the
NICU. When Owen was born his head circumference was just over 53 centimeters, which is almost
21 inches. While he weighed 9 pounds 6 ounces, the doctors figured that almost 3 pounds of that
was extra fluid in his head. For all of his medications his weight was converted to 6 and a half
pounds. Owen was born on Monday and his shunting was originally scheduled for first thing on Wednesday.
The night before the shunting was scheduled the nurses tried to put Owen in my arms so that I could
hold him before his surgery. I was only able to hold him for a minute or two though because it was
obvious that even though they had put him on a pillow it was hurting him and he was crying. We
knew that the shunting was coming soon though, so we just told ourselves that it wouldn't be much
longer before we could hold him.
On Wednesday morning we got up at 5:30am and headed down from my room to
sit with him until his surgery which was
scheduled at 7:30am. They had him all prepped and ready to go when a nurse came in and said that
the blood culture that they had taken as a routine thing when he was born had come back positive for
an infection. They canceled the surgery just as they were about to take him out the door. We
were devastated. For months the shunting was the moment we had been waiting for. It was the
moment when the pressure would be taken off of the brain and when things would stop getting worse.
Owen had been put on antibiotics as soon as he was born just as a precaution and they told us
that there was an excellent chance that the infection was already gone, but that they couldn't risk
surgery until the culture came back negative. The surgery was tentatively rescheduled for two days
out on Friday and we headed back to my room in a daze.
Wednesday did bring one good first though. Owen had not been given anything to eat for his first
two days because they didn't want anything in his stomach before the surgery. Since the
surgery was rescheduled, they took all of the breastmilk that I had pumped, which was just
colostrum at that point,
and gave it to him. They started out feeding him from a bottle and he sucked and swallowed the
first bit all on his own. They wanted to give him the whole lot though to boost his immune system
as much as possible before the surgery so they fed him the rest through a tube. He continued
to eat more until midnight Thursday night because the shunting was scheduled for Friday morning.
I hadn't started producing as much milk yet as they wanted to give him, so they gave him some
formula, which he flat out didn't digest. This would become important later.
By Friday morning I had already been discharged from the hospital, and since you can't room-in
with the babies while they are in the NICU we were staying at a hotel across the street from the
hospital. Once again we got up bright and early to go and sit with Owen until his surgery, but
this time we didn't let ourselves get our hopes up too much. The blood culture was still showing
negative when we went to bed the night before, but we didn't want to be devastated if the surgery
was put off again. Luckily though, the culture was negative and they put the shunt in. It was
the longest hour and a half of our lives as we waited for the surgeon (Dr. Grant) to come out and
tell us how it went, but everything was fine. The docs had told us to be prepared that Owen might
have to be on a breathing tube for a while after the surgery because the general anesthesia is
very hard on their little bodies, but he did so well that they took the tube out before he even
left the OR.
Owen just after the shunting
The shunting went perfectly, but this was when the first of the feeding issues began. Owen
himself was able to feed just fine, it was the long string of doctor's decisions that held him
up. After the surgery he couldn't get real food for a while, of course, so they were
feeding him dextrose and lipids through an IV. He started to develop some jaundice because he
didn't poo for a while after the surgery and they did an x-ray of his GI tract the
afternoon after his surgery just to make sure that everything was working fine. The x-ray was
clean, all was well but they decided to wait until Saturday and another x-ray to feed him
just in case. On Saturday his jaundice disappeared on its own, but
they said that there was a little too much bile still in his stomach and they wanted to wait
one more day. On Sunday they finally put him back on breastmilk, but didn't want to let him
try a bottle again, even though he had done quite well with it, until a therapist could make
sure he was doing it right.
Tuesday October 3rd was a big day for Owen. He got his cord blood infusion on that day. The
whole thing only took about 15 minutes, and Dr. Kurtzberg came and did the infusion herself.
We cannot thank her enough for the personal interest that she has taken in Owen. Our case
can't help her research at all because there is no way to know if the cord blood helped him or
not. Even so she took the time to help us out to get us down there in the first place,
visited us in the recovery room right after he was born, did the infusion herself and visited us
during the month that we were in the hospital afterward. She has kept track of his follow up
visits and given us helpful advice on vaccines needed for preemies and such that the other
doctors didn't even think to tell us. She is just a wonderful person all around and I hope that
someday Owen gets to meet her when he's older.
Dr. Kurtzberg (dark hair on the right) gives Owen his cord blood infusion
That same day we meet Sabrina the speech therapist for the first time. One of the best things
about Duke is that they have a specialist for everything and they are there to help you every day.
At this age the speech therapists (and also the occupational therapists) help the babies in their
feeding technique. She got him to eat 11cc of breastmilk from a bottle just fine before he fell
asleep. He had no problem sucking and swallowing. Even though he did so well, the docs decided that
he shouldn't try any more bottle feeding for the rest of the day so that he didn't get too tired out.
The next day, Wednesday October 4th, Owen successfully fed from the breast for the first time and
was cleared to move out to the regular pediatrics floor. The shunt was working well, his head was
getting smaller and things were going pretty smoothly. I was happy that he was moving out of the
NICU because I could room-in with him on the pediatrics floor. This meant that I could spend a lot
more time with Owen (Daddy had finally gone home the day before) and it meant that I didn't have to
make the walk back and forth from the hotel anymore, which was still pretty difficult after the
C-section.
Owen on October 5th, the day after leaving the NICU
Shortly after Owen moved to the main floor, we met Dora the physical therapist. She was the
absolute best. Owen had to sleep at a 45 degree angle to help his drainage. This is pretty
hard to achieve without the kid slumping down into a heap at the bottom of the bed. She carved him
a foam "baby barcalounger" that cradled him perfectly while keeping him from sliding down in the
bed. Dora was also a great help in teaching me how to hold him and calm him down, since things are
a bit different with a baby with a big head. She also helped out in many other ways. When I wanted to
take Owen for a quick walk just up and down the halls on the floor the pediatrician insisted that
I have an OT person with me, the oxygen meter attached and get a stroller. Arranging all of this
always took so much time that there wasn't enough time between the feedings to actually achieve the
walk and it was silly because they didn't have all that when they brought him down for x-rays or
CT scans. Dora had a talk with the docs and suddenly we were cleared to leave the room to talk a
walk, untethered. Finally, she was just a good friend who listened.
From this point on the biggest reason that we were still in the hospital was because of the feeding
issues. The skin over Owen's shunt was paper thin and the doctors wanted to put as much weight
on him as they could in as short of a time as possible. We tried feeding at the breast a few
more times and he did very well, but his head was still very big and it took another person there
to get him positioned appropriately. Cathy the lactation consultant was just wonderful in helping
with the pumping and the feeding. However, the docs wanted to weigh him just before he fed and just
after he fed, which was ridiculous because it always took forever to get someone there to
weigh him while he was wailing for food. At 2:00am it seemed like too much to deal with. So
I kept pumping the breastmilk and I started focusing on getting him to eat from a bottle full time.
The problem was that they wanted him to eat way more than a baby his age would normally have to eat.
They had a pre-determined amount that he had to eat, every three hours. I would feed him as much as
he could take from the bottle and then they fed him the rest through a tube that went down his nose
and into his stomach. The pediatrician also didn't feel that breastmilk had enough calories in it
so she convinced me to put formula powder in the bottle with the breastmilk. Now I don't care how much
they tell you that they support breastfeeding, some doctors still don't trust anything without a label
on it that tells them exactly what the kid is getting. This was a pretty scary time. They were
putting so many calories in him at every feeding, force-fed through a tube, that Owen became
non-responsive. I had panick attacks when I tried to bottle feed him because he wouldn't even move.
My previously very alert little boy wouldn't even raise an arm anymore. I was certain that the shunt had
failed or that something had gone terribly wrong. More than once I called the nurse in and we
would put him down on the bed and just poke and prod at him until we got a response. He was
also refluxing all the time and trying to throw up everything they were putting down. The
pediatrician told me that he probably had some kind of neurological damage that was making it
so that he couldn't feed, even though we had seen him eat just fine the week before. I was getting
very worried.
Eventually through the fog of sleep deprivation I realized that this had all started when they
started giving him the formula about 4 days before. I remembered that in the NICU, where they
actually check the contents of the stomach before each feeding to see what has been digested, he
had never digested the formula at all. So I pulled the plug on the formula and said no more. The
pediatricians fought me tooth and nail about it, but in the end Mom does have the final say.
I got them to agree to just up the amount of breastmilk a bit at each feeding to get the extra
calories and throw out the formula altogether. Owen started coming out of his food-coma almost
immediately. Suddenly he started getting hungry again and fussing for food when feeding time came.
He was alert again and we finally breathed a sigh of relief. He started eating more and more from a
bottle and less and less from the tube. Between Dora (physical therapist) and Sabrina
(speech therapist) and Tricia (occupational therapist), they made it possible for me to fight for
Owen to get off the feeding tube and to eat on his own. They had seen him eat just fine
before the formula and they made it clear that they didn't feel that there was any
neurologic damage keeping from eating. The docs obviously thought that I was just not
facing reality, and without their support it would have been much harder.
Just as things were starting to go well with the feeding we had another setback. The feeding tube
was inserted in Owen's nose and went down to his stomach. This tube was left in full time and it
started to irritate his nasal passages. He got more and more congested and started having trouble
breathing. Babies are nose breathers and it takes a lot for them to realize that they have another
hole they can breathe through. Bottle feedings started going downhill fast because he couldn't suck
and breathe with his nose all clogged up.
Finally it reached a critical point one day. All morning long he had been gasping for breath and
I had been trying to get someone to take it seriously. While the NICU docs and nurses are the best
on the planet at Duke, I was beginning to see that the ones on the pediatrics floor were either
just not used to such small babies, or they just weren't thinking. The pediatricians spent an
hour solid lecturing me about calories that morning and how they thought that maybe waiting a
half an hour or hour to feed him occassionally until he got hungry was going to cause him to
lose weight. They pointed out that he currently weighed less than when he was born despite all of their
efforts to help him gain weight. At this point I really just started to shake my head in disbelief.
I explained that when he was born it took two people to get him out of bed and put him in my lap
because his head weighed so much. Now, a couple of weeks after his shunting, I could pick him
up and get him out of bed all by myself. He had lost a lot of weight out of his head. The
pediatrician just said that they had no way of measuring that and seemed to think that therefore it
had to be discounted, but finally conceded that it might in fact be part of the reason. When you
looked at his weight over the days since the shunting you could see that it had dropped pretty
dramatically as his head size originally went down, but then had gone back up as his head size
reached a plateau and stopped going down.
So, they had spent all morning arguing about his calorie intake, but brushed off my suggestion
that perhaps someone should do something about his gasping.
They pointed out that his oxygen levels were fine. I pointed out that the only reason
that his oxygen wasn't dipping down was because he was burning every calorie he had ever
taken in to gasp enough to keep the levels up. This didn't seem to me like it would help
his weight gain either. They were worried about his caloric intake and I was worried about
his oxygen intake.
By the afternoon he was
seriously struggling to breathe and at one point he sneezed and something in the nasal passages moved
and almost completely clogged his airway. His oxygen levels dove. A respitory team came rushing in
and used deep suction to get him breathing again. A very scared Mommy had to sit helplessly in a corner
and watch them work. Even so the pediatrician insisted that we leave
in the nasal tube because it's hard for babies to bottle feed when the tube is inserted through the
mouth. I explained that it's also impossible for them to feed if they can't breathe. It took me until the
next morning when I threatened to take it out myself for me to convince them to take out the nasal tube
to give him a chance to heal.
Unfortunately the deep suction had done a great deal of damage to his nasal passages. It took
several days of passing clots and another rescue from a blockage before they healed enough that
he could breathe well enough for the bottle feeding to have any success. Two weeks were lost
just to formula and a nasal tube. The shunt was still performing beautifully, but everything else
was having trouble.
On the day that they took out the nasal feeding tube, October 11th, the neurosurgeons decided that Owen's
brain wasn't draining
fast enough and that it might be helpful to reprogram the shunt to drain at a lower pressure. They
wanted to see his head circumference come down even more, so they brought him down and reprogrammed the
shunt. This is a pretty cool procedure where they look at the shunt with a floroscope (a real time
x-ray) while positioning a magnet over the shunt. They turn the magnet and it changes the setting.
In the past this procedure would have required surgery, so we were very happy that they now have
programmable shunts. The neurosurgeon told me that I shouldn't expect to see any changes right away.
The next morning though I woke up to a new baby. His head circumference had dropped dramatically
and he had once again lost a whole bunch of weight. While it happened a bit quicker than they
expected, the neurosurgeon said not to worry and it was fine.
Owen on October 12th, the day after the shunt reprogramming
This change turned out to be the best help yet in the feeding. I had not been able to burp Owen
very well because his head was still quite heavy and I couldn't get him sitting upright on my own.
This lead to him often spitting up a good bit of food, or at least fighting a lot of reflux
after bottle feedings. It was also still pretty awkward to hold him and it required a fair amount of
positioning on pillows. After the reprogramming everything got much easier. I had no trouble picking
him up and I could burp him like a normal baby. The reflux got much better and he was able to
eat a lot more efficiently because I could hold him in a much better position while he was feeding.
On Friday October 13th I started to notice that the incision on Owen's stomach didn't look quite
right. There is an incision in his head where the shunt goes into the brain. From the shunt
(which is really just a valve) there is a tube that goes down his chest and into the peritoneal
cavity around the stomach. There is an incision in his tummy where they positioned that end of the
tube. It had looked fine for weeks but suddenly it started looking red and starting to puff up.
Several doctors on the floor looked at it and told me that it was just normal healing, but they
said they would mention it to the neurosurgeon.
On Sunday night I went to change his diaper
and felt that the front of his outfit was all wet. I thought that maybe he had managed to pee out
of the top of his diaper as boys will sometimes do and changed the diaper and put on a new outfit.
As I was snapping up his new outfit I kissed his belly to get him to stop fussing
and realized that his belly was all wet again. I looked at the incision and saw that it was weeping
and clear fluid was squirting out every time he cried. In the middle of the night the on-call
neurosurgeon came in to look at it and he also said that it looked like normal healing, but he
also said he would mention it to Dr. Grant, his normal neurosurgeon.
The feedings had been going great and the docs had said
that it was time for us to go home. They scheduled us to go home on Wednesday October 18th.
They made me learn how to put in a feeding tube because they still weren't sure that Owen would
be able to feed entirely on his own. I knew this was silly because he was ramping up his feeding
from the bottle very quickly, but I was willing to do just about anything to get out of the
hospital at that point. I learned how to do it and actually put a tube in all by myself.
Arrangements had all been made for physical therapy at home, everything was all set to go and
my husband and daughter had both come down on Tuesday night to bring him home on Wednesday morning.
Now up to this point Dr. Grant had been really great about coming to check on Owen and his shunt.
He must have been particularly busy during this week though, because he still hadn't come to
check on Owen's incision since it had burst. He had ordered a strong antibiotic that had to be given
by IV after it burst. Unfortunately by then Owen had had all of his IV lines taken out in
preparation for going home. So the pediatricians had given him an oral antibiotic instead.
It was still looking very red and I was adamant that he needed to look at it before we left.
Dr. Grant finally came in on Tuesday night after everyone had come to say good-bye and we had started
packing. He declared that there was no way we could go home with the incision looking like that.
He ordered that an IV be placed for the stronger antibiotic and he said that we wouldn't be able to
go home for probably another week.
We were pretty upset that night. I had thought that I was finally going to go home to my own bed
and maybe get more than 45 minutes of sleep straight without someone coming in to poke at Owen.
Our daughter Sammy was upset because she had been all excited that her brother was coming home and Daddy was
just as upset as the rest of us. Mommy had reached her limit that night though. I was angry beyond
all reason that it had taken so many days for someone to reach the conclusion that the incision was
infected. It was just one too many things. Daddy came to the rescue and spent the night in the hospital
with Owen while Mommy spent the night in a hotel with our daughter Sammy. By the next morning I was able
to cope again and Daddy and Sammy headed home.
We had to deal with one more problem before we left. We found out that there are different kinds
of IV's. The first one that they put in for the antibiotic was a peripheral. This just goes
into the small veins in either a hand or foot. They put one in his right foot and were putting the
antibiotics in him that way every 12 hours. Thursday night, just as his dose was finishing, Owen
started wailing. When I looked at the IV I saw that his ankle was all swollen and red. Apparently
this antibiotic (vancomycin) is very caustic and has a tendency to blow out the vein it is going into
and this is what had happened. When Dr. Grant came in the next morning he was astonished to see
that they had not put in a PICC line, which is an IV that goes about 12 inches into the vein
so that it is feeding the drugs into a place where the veins are much larger and won't blow out.
After much pain and agony, they got a PICC line in. This line was to cause us a lot of problems
after we got home.
Once Owen had the antibiotics in him, the incision improved rapidly. There was one other good thing
about waiting to go home and that was the car seat problem. Before a preemie can leave the hospital
they have to pass a car seat test where they must sit in their own seat for the same amount of time
as it will take to get home. Owen did not do well on his test. His head was still very large
compared to his tiny little body and it made him very scrunched up in his seat. He didn't tolerate it
very well and was only able to stay in it for about 15 minutes, well shy of the three and a half hours
he needed. Dora was working frantically to find a way to position him in it that didn't break any
of the very specific rules about what can be put in the car seat with the child. Having a few
extra days made it possible for us to order a
car bed to
bring him home in. The car bed came in on Friday, two days after we were already supposed to
go home.
On Friday afternoon the pediatrician came in and said we were going home on Saturday. We weren't
really prepared, since we had been told that it would be at least a week. Owen was still on IV
antibiotics and would be for another full week. The doc said that she had arranged for someone
to come out to the house and set us up to do the IV ourselves. This seemed insane to me, but
we were all getting pretty desperate to get us home. I had already learned how to put in a feeding
tube, suction his congestion and administer oxygen, why not pump in antibiotics through an IV?
At this point Owen hadn't needed the feeding tube
at all for two days so it was clear that he was ready to leave from a feeding standpoint, so I
called Daddy and told him to head down first thing in the morning. And so, on Saturday October
21st, Owen finally came home.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
