Introduction Yorick
Cindi Winkley (@ig2.att.att.com:cvdleur@bru00.atteur.mail.att.net)
1 Apr 96 15:39:00 +0000
Hello everyone,
My name is Caroline, from Brussels, Belgium and as a recent Internet
subscriber, I was very pleased to find your discussion group to which I have
immediately subscribed. I have been looking for information on premature
children ever since our son was born almost three years ago, but this was
very difficult here in Belgium.
My objectives for joining the group are to get more information on
longer-term prospects for preemies, and to contribute from my experience,
with a viewpoint from Europe.
Here we go.
Our daughter, Dorine, was born in 1989 after a great pregnancy and a
relatively easy birth. We decided to have a second child, and in 1991 I got
pregnant. I felt very sick from the beginning, had spotting at 9 weeks and
went into hospital at 12 weeks with heavier blood-loss and contractions. At
20 weeks it appeared amniotic liquid was decreasing, probably through a
rupture, and the contractions got worse. I was put on a drip but to no
avail, the baby, a boy, was stillborn one week later. The cause for all my
problems seemed to be a placenta previa, which had become slightly unstuck,
explaining the blood-loss and contractions.
As we were assured this was a one-off +accident+, which was not to recur, we
decided to try again. It took me one year to get pregnant, and then the same
thing happened all over again, despite a well-placed placenta. Morning
sickness lasting throughout the say, bedrest at 11 weeks for spotting,
hospital at 15 weeks for severe blood-loss and contractions, 8
bloodtransfusions, constant IV drips with Prepar (which is the medicine they
give to people with asthma), monitoring and ultrasound scans, i.e. the
works. It was an extremely difficult time, with a lot of physical pain and
mental uncertainty. However, we managed to hang on, I in my hospital bed and
my husband at home with our daughter, and we finally got to 26 weeks. This
was considered a minimum for the baby to have a reasonable chance to live
with minimal (lesser?) chance of disability, even
I was transferred to a university hospital, put on to steroids and other
+poisons+. The doctors there wanted the baby to stay in for another 3 to 5
weeks at least, but Yorick decided otherwise and was born at 27 weeks by
normal delivery under epidural. His weight was more or less 950 gr (we never
knew for sure because they only weighed him when he was 12 hours old and had
been on drips) and he subsequently lost weight to 850 gr.
Contrary to other parents in the unit, we actually felt lucky that he was
born and living after our previous experience. The doctors and nurses
explained no prognosis would be given for the first week as he was very
small and very ill. We were only told he was stable, which we considered
positive news. He was on a respirator and after two days had to have an
operation to close the artery canal (?), after which he slightly improved.
Unfortunately, when he was 8 days old he had an intraventricular
haemorrhage. We were told by the night-doctor he would probably die, and
were completely shattered by the news. That night was the worst night of our
lives and we will never forget it, and still blame this doctor for not
having given us some hope. The next day the regular doctors explained IVH
were very common in babies born that early, and that further tests were
needed to see what had exactly happened. Luckily the ultrasound scan showed
only bleeding in the ventricles (and not the brain itself) and other tests,
such as EEG plus hearing/sight tests were positive. We decided to see one
day at the time how Yorick would progress, be his parents, try to bond with
him and make him feel loved and desired, and, miracles do happen, he slowly
stabilised. He got off the respirator at 4 weeks, was moved to the +normal+
ward weighing 1100 gr.,steadily improved and gained weight. At one point
there was a slight worry of hydrocephalus, but the magnetic resonance scan
ruled that out, but showed a small brain lesion, in a border area (I+ve
forgotten the scientific term). We were told this might or might not have an
effect on his sensor-motor functions (arms or legs), but with no certainty,
wait and see.
Even though the days were very long, we spent as much time with Yorick as we
could, in between work for my husband, and breast-pumping for me as well as
taking care of his sister. We were allowed to hold him for the first time
in our arms when he was 1 month old, and two weeks later he started
breastfeeding (even though he was never very good at it, he loved being
close to me).
Yorick came home after 87 days. He was an extremely difficult baby, always
crying and managing to - it seemed - almost never sleep. Very awake and
bright, very irritable, we were always on the move with him because that+s
the only time he slept.
He returned to hospital when he was 4 months old with a (strangled) inguinal
hernia - in the neonatal unit as he was still very small.
He was on an apnea-bradycardia monitor for one year, and we were very glad
to finally get rid of it. We especially hated the +sleep tests+.
At 9 months old we noticed motor functions of Yorick+s legs where not as
they should be. He could not turn over, and always kept his legs very
straight, so he was not able to crawl, and very frustrated. We started him
on Bobath physiotherapy, with very good and rapid results. He walked at 18
months, tends to drag his right leg and doesn+t put his weight on his right
leg sufficiently. Because of this the position of his right foot is
outwards, and his toes tend to curl up. All of this does not seem bother
him, he just barges ahead and climbs on anything, especially a chair to get
at the cookie box ! He was fitted with braces for a while, but this didn+t
work out. We now have special reinforced shoes for him with much better
results.
The first two winters he had problems with recurring bronchiolitis,
requiring respiratory physiotherapy (+tapotage+), but luckily no
hospitalisation. This winter was much better as he got stronger and more
resistant we guess.
He is an extremely bright and cheery child, looks a little Einstein with the
glasses he needs for strabismus, and really knows how to get his own way. He
is very strong-willed and determined, which we think was probably why he
managed to hang on in the first days of his life.
He was in day-care from when he was 8 months old, and now goes to
kindergarten. No problems in adapting (except for wetting his pants for a
while), he loves going. His sister plays (field) hockey, and he is very
determined to do the same, he hits the ball very well even though his
balance is not very good. But we were told playing hockey is actually very
good for him as he has to use both hands to hold the stick forward, which
forces him to put his weight on both legs.
He now weighs 12 kilo and measures 91 cm, still small but beautiful !
The only thing that still bothers us sometimes is the fact that his sleep is
- at times - still very disturbed. Some weeks he will sleep for 12 hours on
end, other weeks he will wake up 2 or 3 times a night, usually ending up in
our bed to sleep peacefully. We think he will grow out of it, but the
sooner, the better !
Reading this over again I find our story has turned out to be quite long, I
hope you will find the time to read it and I look forward to your comments.
Bye.
Caroline.