Richard Oken East Bay Pediatrics
My sister lives in the UK and had a baby at 32 weeks, 2 days
ago. He is 2lb 7oz and doing well apart from his lungs have not
developed properly so he is on a ventilator. He was small for
the gestation date due to the placenta failing. Can anyone
just help me out by giving support or stories about their
premature babies ? I feel totally lost being all the way over
here and unable to give the love I should to my sister. I
can't stop thinking about her and little Mack.
The best think is information and support. You can get started from anywhere with:
This is a good place to start.
The most important aspect of otherwise healthy premature babies
is the simple fact that they are so small in their first months
of life. I had premature twins born at 33 1/2 weeks weighing 4
pounds each. In the beginning they need to be fed all the
time. For us, it was every 2 hours 24/7. We had to do this for
a few months. This is extremely hard on the parents. There is
no way if this is your sister's case that she'll be able to keep
up that schedule. The sleep deprivation that parents feel is
very very hard to recover. Hopefully, your sister is willing to
supplement with formula so that others can help with the feeding
so she can rest. Believe me, if she can't get rest the
breastfeeding will be difficult for many reasons. A network of
friends and relatives is what she'll need to share the wealth.
Otherwise a healthy premature baby will catch up in every
respect to their full term equivalents. Best to you and your
Hi - I just thought I'd share the story of my friend whose
daughter was born at 27 weeks, and was 1 lb. 15 oz. Now, almost
2 years later, she's doing GREAT! 32 weeks is considered a
pretty safe time at this point, and your little nephew is
obviously getting great care. Odds are very good that he will
be totally fine, so just try to take it one day at a time
because each day is an important milestone for him. Good luck,
and sending you hugs.
My sweet boy was born by emergency C-section at 34 weeks (I
went into the hospital with severe precclampsia at 33 weeks),
weighing 4 pounds 7oz. I, of course, was totally traumatized
by the whole experience, even though he was basically a healthy
boy (a little jaundiced, a bit small, had a nasal feeding tube
for 2 weeks until he could nurse convincingly). I remember
that it was the little stuff that bothered me the most...he was
absolutely swimming in even newborn clothing, and that really
freaked me out. Adorable preemie clothes to the rescue
(Rockridge Kids has a great selection)! It felt good to go
through the significant effort of pumping breastmilk because it
was something only I could offer him, and it kept me focused on
the future that I wanted for us (to bring him home
breastfeeding 100%, which did ultimately happen). And I spent
hours and hours holding him skin to skin once he could be out
of his bassinet (UV light therapy and ventilators of course get
in the way of this, but even just being able to have him hold
my finger helped). And now? He's 13 months old, fat as a tick
on a hound dog, mischevious and tempermental, and TOTALLY
NORMAL. He really never looked back! What's amazing to me is
how quickly the preemie thing faded into the past for us. It
was completely horrifying to go through, but perhaps has
allowed me to transition into the daily grind of motherhood
with a bit more humor and a solid appreciation of how this
fantastic creature has come to be in my life. So send some
tiny outfits and your love, modern medicine is amazing and
little Mack will probably be terrorizing your sister's
household soon enough. Go visit when he's been home for a
month or two, that's when she (and all moms) need help the
Every parent responds to the crisis of having a very premature
baby differently. However, as a mother of twins who were born
just over 9 weeks early, the following things were helpful to
me. I found that living at the NICU day in and day out to
spend time with my boys could feel very isolating. It was
helpful to have people come to sit with me during those long
days. The NICU is generally a quiet zone, but just
having the company was nice. It was also good when people met
me to grab a bite to eat or to take a walk during the time each
day that the NICU is closed (generally an hour or two in the
afternoon). I didn't want to take the time away from my boys
to go shopping, so it was also wonderful when people brought or
sent preemie clothes. Our boys still swam in them, but at
least they didn't just fall off when you held them up!
Children's Place in Walnut Creek and Walmart (of all places)
have preemie clothes but they're meant for babies around 5 lbs
and up. There are a number of internet sites such as
preemie.com that carry preemie clothes for babies starting at
less than 1 lbs. Somehow being able to dress your little ones
in clothes that fit make them seem less tiny and fragile. The
nurses at our NICU also encouraged us to get involved early in
changing diapers, taking temps, holding the boys during
procedures, etc. It was great to have the modeling that even
though they were so fragile medically, they weren't actually as
physically fragile as they looked. We also kept a digital
camera with us and took pictures often--it's amazing how much
change you can see from week to week in pictures that you don't
see otherwise. There are many ups and downs that occur during
the long weeks in the NICU--it was great that my friends kept
calling and checking in and were there to hear the good and bad
news. There is usually a flood of support in the first couple
of weeks, but then people return to their lives while yours is
still on hold--I really appreciated the friends that stayed the
course with us. My sincerest of good thoughts go out to your
friends and their baby girl.
My friend's baby was born several weeks prematurely. The
hospital wants my friend to take the baby home soon, but my
friend is afraid that the baby isn't ready to come home yet (she
occasionally stops breathing when she eats); however, the
hospital is pushing for the baby to go home. My friend is
exhausted, scared, and overwhelmed by what faces her in caring
for a preemie. I would like to help her by finding whatever
resources are available in the East Bay for preemies and their
families -- support groups, advocates, anything that might help
her make it through this stressful time. I remember how scary it
was having a full-term newborn at home, and I can't imagine the
stress of caring for a child whose life really is in a daily balance.
I am the mother of a 5 month old premie who was born at 33
weeks. It can be a terribly isolating experience. The support
group at the hospital was really only helpful for learning the
ins and outs of the NICU. And I didn't really find many
resources or support groups for after the baby departs the
My child had those feeding bradys as well - and though I found
them terrifying in the hospital, I am now pretty sure all babies
do this from time to time as they learn to eat. We premie
parents are just a little more freaked out because there are so
many things being monitored on our babies that we know every
little decleration of their heart and change of their body
While I was terrified at the time, going home was really the
best thing for all of us. Things really did get a lot easier
once we were all home together.
The best gift you could give your friend is something called an
angelcare mat. It's a baby monitor that also lets you know if
the baby stops breathing. Trust me, this monitor will help your
friend sleep at night. It's easy to use and has given us peace
of mind. We bought ours online and I've seen them at Babies R
I was lucky that this wasn't my first child - so I didn't have
all of the first time mom anxieties to go along with being the
mother of a premie. If your friend is a first time mom - I
highly recommend that she join a first time mom's group - either
one of Sherry Reinhardt's groups or one from her hospital or
birthing class. It's important that she ask to be grouped with
children who are close in age to her baby's corrected age so
that she will feel she's going through the same things as the
other moms. Developmentally, her child will be more similar to
that group than a group with the same birthday.
And finally, if you email me, I'd be happy to give you my phone
number to pass along to your friend. I think it helps to know
people who've been through the experience. I know that's who I
I was horrified to read your email, where you say that 'The
hospital wants my friend to take the baby home soon, but my
friend is afraid that the baby isn't ready to come home yet
(she occasionally stops breathing when she eats)'. Being the
mother of a child born 12 weeks premature (at Alta Bates), the
hospital emphasized that they would not release the baby until
he had completely ceased having As and Bs (the technical term
for what you're describing - Apnea and Bradycardia) for a
specified period of time - I think that it was 2 or three days.
It's something that preemies do grow out of, so that should be
some reassurance. I don't know if your friend had her child at
Alta Bates or not, but there is a wonderful parents support
group that meets both during the day and in the evenings. Try
calling the NICU at Alta Bates and asking about the parents
support group (510) 204-1626 to find out when they meet. The
support group would also have resources for you.
I am also very willing to talk to your friend. Please do pass
along my contact information if you wish.
there are ''post partum'' doulas and doulas who love working with premies and
and i am one of those but there are sooo many and the national doula site is
chock full of info
social workers at hospitals are great resources. la leche good, too...
pace e bene
my second son was born at 261/2 weeks in october 01 (now 17
months old) and has different developpemental delays.
as we moved from san diego to berkeley only one month ago, I am
not very familiar yet with different groups or activities for
premature babys here in the bay area;
does somebody know any kind of helpful resource?
thanks for your help. k
I just wanted to follow up with the mom that is looking for a preemie
support group. My baby was born at 30 weeks in September of 2002. I
have searched and even tried to start a support group. There is just
nothing in the East Bay. If you want to talk or would like to help start a
group please email me.
Hi, my son is not premature but has developmental delays. If
you have not already, get in touch with the East Bay Regional
Center and they will help you get services. I highly recommend
the Parent Infant Program at Children's Hospital...They have a
center-based program near the hospital and a ''natural
environment'' program at the Berkeley YMCA.
The Family Resource Network will probably be able to help you
locate a support group in the area. I'm sorry I don't have any
of these phone numbers but I would be happy to help you further
if you would like recommendations for speech, OT, PT, if your
child needs them. Feel free to contact me!!!!
There are some services which are provided for free until your child is 3
which you need to know about. The services are provided by county.
You can find out more either through a hospital NICU social worker or
possibly from Bananas on Claremont Avenue in Oakland. The best
support group I know of is the preemie - L listserve group.
Please feel free to contact me.
My son was born almost 6 weeks early. To get him breastfeeding,
the hospital gave me a nipple shield to help orient his mouth to
my breast. Soon after we came home, he was receiving all
feedings from my breast with the shield. But, oh the pain of
it! Now, I'm attempting to wean him from the shield. He
latches on sometimes with out it, sometimes with it. I'd love
to hear from other mothers who used a nipple shield, hoping for
some advice on weaning, proper latch for a preemie, and
encouragement so I don't give up. We are making progress, but
it's slow. Thanks!
I, too, used a shield to help nurse my baby. She was not a
preemie, we just had trouble latching on. I hired a lactation
consultant and she gave me a shield. It worked wonders for us.
However, I became quite reliant on the shield and found the
transition, to nurse without it, daunting. Every time I tried
to nurse without it she became frustrated & cried and I would
give up and put it back on. I thought I would end up using that
thing for year!
I finally called my lactation consultant and asked for help.
She suggested that I put the shield on at the beginning and
then, once the nursing was going well, break the latch, pull it
off, and start nursing again. This worked fairly well.
What really was the clincher was to try this when my baby was
really calm and sleepy (i.e. early in the morning). She had
much more patience with trying to nurse at that time.
Eventually she preferred the real thing because the milk came
out so much faster.
Her latch was still not the best & even hurt me at first. I
cannot stress enough the importance of nursing at the first sign
your baby is hungry. If you wait till he/she is crying the
process is much more challenging & painful. I just kept on
trying and she improved her latch after a week or so. Now it
doesn't hurt at all and nursing is a joy!
I know you can do it! Just pick your moments and give it a try!
I, too, began breastfeeding with a nipple shield. My son was
four weeks early and would not latch onto the real thing, no
matter how hard I tried. I read all the horror stories against
using nipple shields only after the lactation consultants at the
hospital started me on the shield. (Most of the stories,
including the ones in the Sears' book, warned against the wrong
kind of latching and baby's future inability to learn to
breastfeed without it.) But without the shield I'm convinced I
never would have been able to breastfeed. And I wound up nursing
until my son was 13 months old, when I weaned him to cow's milk.
So we did pretty well, all in all.
There was no one thing I did to wean my baby off the shield.
From the first week, however, I always offered him my real
nipple first. I squeezed my breast to make what the lactation
consultants called a ''sandwich'' (love those technical terms) and
dribbled a little milk out to entice him. It wasn't a really
happy thing. He would cry like crazy, and I was a nervous wreck.
I was sure he thought I was teasing him. But suddenly, at about
6 weeks old, my baby latched on once. Then he latched on again--
and again. Several of the lactation consultants I met with told
me that many premies won't latch successfully until they catch
up to their ''true'' birth dates. I believe this is true. I also
think that persistence and patience pay off. Once my son was
able to latch on, I stopped using the shied cold turkey. I
didn't see any sense in doing it gradually. Unfortunately, I
then dealt with a month of excruciating latch-on pain and
scabbing because my son had a 6-month-old's suck. Yeoww! (I
highly recommend Neosporin for such scabbing.)
I'm now expecting my second child, and I'm just hoping this one
goes full term and that we don't have the nursing troubles I had
with my first. We'll see. If you have any specific questions,
feel free to e-mail me.
What I didn't learn about nursing a premie is that until they
are 8 pounds, nursing is really difficult (this is what the
lactation consultant told me when we were getting close to that
point.) Their mouths are very small and it can be painful. I
found it helpful to alternate nursing and a bottle (given by my
husband) until my child refused the bottle at around 3 months.
On the positive side, once the baby gets big enough nursing goes
fine, and it's a great way to comfort them, and deal with some
of the problems premies confront (mine couldn't digest solids
until 6 months, and didn't eat much solid food until about a
year). I used Bonnie Bruce as a lactation consultant and she was
very helpful for getting through the initial rough period. I
would be very cautious about listening to advice from people
with full-term babies because at the beginning premies have
unique needs and ways of doing things.
My daughter was born 5 weeks early
and nursed using the nipple shield for 10 weeks before transitioning to
nursing directly on the breast. We worked with two lactation consultants at
Kaiser Oakland, first Paulette Avery for about 9 weeks and then Joann Jason
for one appointment. We liked both of them. However, Paulette tried for
several sessions to get my daughter to latch on properly without the shield,
and while it occasionally worked in the office we had lots of trouble
replicating it at home. We knew this was a common problem but we felt like
we were making no progress and it was veryhard emotionally. We finally made
an appointment with Joann to get a new perspective, and my daughter
immediately latched on and never went back to the shield after that. At 16
months she is still happily nursing. One thing that Joann said that seemed
to be true for us is that around 5 weeks after the due date, the baby they
often go through a period of increased flexibility around eating -- ie. they
might accept a bottle where they wouldn't before, or accept the breast with
no nipple shield, etc. My basic advice is this: Be patient with yourself and
the baby, this may take several weeks. I know this is difficult. Try to get
help from experienced nursing moms (La Leche League could be a good
resource) or lactation consultant(s) (we would highly recommend Joann Jason
at Kaiser Oakland), and if you feel like you are not making progress with
one person try another person. It may be worth making a special effort
around 5 weeks after the baby's due date -- so when your baby is 11 weeks
old since he was 6 weeks early. Best wishes to you and your son! You can
contact me directly if you want to talk more about this experience.
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