The trip home was long. Owen still had trouble keeping his oxygen level up, even though he
was laying in the car bed. We had to stop several times and in the end I had to hold his head for
the last half an hour of the trip. But it was worth it, we were home. Within an hour of getting
home the nurse met us to show us how to administer the IV antibiotics. We had some concern that
they did not send us home with a continuous drip for the IV because in the hospital they had made
a big deal about how important it was in keeping the line open. When I asked about it for going home
they just said that we could put a bit of heparin in the line before and after the infusion and it
would be fine.
The nurse was really nice and it turned out to be a fairly easy procedure. That night I
blissfully slept in my own bed for the first time in months. It's amazing how peaceful it is
to not have monitors binging and bonging and people coming in just as you are drifting off to sleep
to check vitals, take out the trash, bring in food, take out food, poke and prod at the baby, etc.
Healthful sleep is a completely foreign concept in hospitals.
The next morning we did the infusion and it worked just fine. Owen had slept really well
during his first night home and we were feeling pretty good. I spent the day making the
foam wedge that would let him hang out downstairs with us rather than in the crib upstairs.
(See the info page for more on the foam thingies that keep his drainage going well)
That night we tried to do the infusion and we couldn't push anything through the IV. We
called the nurse and she came out and managed to get the line open again after a lot of massaging
and prodding. The next morning when we tried to do the infusion the same thing happened, but
this time the nurse couldn't get the line to open.
We had to go to the emergency room to get another
PICC line put in. This was a disaster. It took 5 hours of waiting in a common room surrounded by
people with fevers, mono, pneumonia and who knows what else for them to even try and open the line.
That failed and a few hours later they finally realized that perhaps a preemie shouldn't be
hanging out in that enviroment and they moved us to a room. Eventually a pediatrician was
actually called and things improved somewhat. By then the PICC team had gone home for the day
and they couldn't even try to insert the new line until morning. They gave him an oral antibiotic
for the night. Daddy stayed with Owen at the hospital that night and in the morning they tried
to put in the line using a floroscope, but failed. Too many IV's had been put into those little
veins during the previous weeks and there just weren't any left to use. They put him on an
oral antibiotic instead and we hoped for the best.
After that things calmed down considerably for about a week and a half. We settled into
a fairly normal newborn routine of feeding, changing diapers and getting up to feed several times
a night. With the IV out we could give him normal baths for the first time.
I finished the foam wedge and Owen could stay downstairs with us during the day. It was
still fairly difficult to sit and hold him for any length of time because his oxygen levels would
drop off after a while. We brought an oxygen monitor home with us that we left him connected to
almost all the time. It was hard to hold him without him slumping down and he still wasn't big
enough and strong enough to really hold himself up, so having the wedge made it easy to have him
near us without worrying about trying to hold him just right all day.
We had another small bump in the road when he finished the antibiotics and the incision started
turning red again. We put him back on the antibiotics for another 5 days and then when he
finished that it looked fine from then on.
As time went on he gained more and more weight and got a lot stronger. We started being able
to hold him pretty much full time and we were able to take him off the monitor most of the time
when he wasn't sleeping.
On November 20th we headed back down to Duke for the CT scan that would
show us for the first time whether or not Owen's brain was going to recover from the pressure.
For this trip Owen was strong enough to ride in a regular car seat without problems.
We were a bit nervous about what the scan would show, but he seemed to be doing great so we
were hopeful. He was alert, tracking well with his eyes, and was physically very active.
The people at Duke had set up a physical therapist to start working with him at home as soon as
he left the hospital. She helps him to strengthen the muscles that he will need to lift his head
and keeps everything else moving since he can't just lay in his crib and move around like a normal
baby. She seemed to think he was doing very well too. So we headed down with the hope that
we would receive good news.
The CT scan was on Monday, but we didn't have our appointment to see Dr. Grant until Tuesday to
find out the results of the scan. So we stayed in a hotel for the night and headed in the next
morning to see what the scan showed. That was one of the best days of our lives. When Dr. Grant
looked at the scan he used words like "incredible" and "excellent". He told us that this scan
is the first real indication that you have of the final outcome and he said we should be very
hopeful about what it meant for Owen's future. I don't think we reacted quite the way that he
expected because he kept telling us that this was very, very good news. I think we had gotten so
used to steeling ourselves for bad news that we didn't know how to react. By the time we got
back to the car though it had finally sunk in and we were dancing. We called everyone, happy
to be able to call with good news.
Owen's shunting was done on September 29th. The image on the left
was taken on October 16th just a little more than two weeks later. The black areas are fluid and the
lighter areas are brain tissue. It still didn't show much
expansion. The image on the right was taken on November 20th and it shows great expansion of the brain
tissue.
At the moment we are happy with his progress, he is doing everything that a little baby should
do, except being able to pick up his head from flat on the floor. Even that is something that
he is getting closer and closer to with the help of the physical therapist. He smiles,
he is very vocal and he he is a very active baby. He eats, he poops, he pees, he cries,
he kicks and snuggles, that's about
all one expects from a baby at this age.
Now we are just waiting to see what the next few months will bring.
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