Unfortunately the normally unbelievably useful
onesie will not be terribly helpful if your baby has hydrocephalus. Onesies and many other
popular types of baby clothing are meant to go over your baby's head. We have found that
this doesn't work very well with our son's big head. So it's best to buy one piece outfits that
zip or snap up the front. If you have a winter baby these aren't too hard to find. Summer
babies may have a bit more trouble, but a friend of ours bought us these
side snap shirts that were very helpful. The only problem with zippers is that if you
have to have your baby on a pulse/oxygen meter you have to run the cord all the way up to their
neck, so snaps are best. Walmart sells a snap up onsie-type outfit year round that comes in
preemie sizes. Buy lots of those. JCPenney's Carters line is also great for having snaps all the
way up the front. You can also forget any of the normal hats that
you can buy in the store. I crocheted several large hats for Owen. I will try to put the pattern
up that I used in the near future. A hat is very important for a baby with hydrocephalus because there
is so much more surface area for them to lose heat through. Any standard circular baby hat pattern
will work just fine, you just have to add a bunch of extra stitches towards the end.
Bath Time
I found it a bit awkward to bathe Owen at first. I was trying to hold his head
up from slumping down into the water while I was trying to wash him and I found it somewhat difficult.
I had used something called a
Euro Bathtub
for my daughter years ago and I had bought a new one for
Owen almost as soon as I found out I was pregnant again. It was one of those items I just couldn't do
without because it lets them lay down while they are real little, and then they can sit up in the other
end of it when they are sitting up but still too small to be in the big tub. The problem was that
Owen's head kept causing his whole body to slide down. So I have the setup below:
I start with some
non skid shelf liner (shown in the first picture) to keep him from sliding down. The
liner tends to float, so I put a hand towel over it to hold it down and to make it comfy.
The tub has molded sides to hold the baby in position while they are laying in the tub. You
can take a rolled up receiving blanket and set it across the molded part to help support his neck.
As you can see in the last picture, it makes for a happy baby. It may seem a bit elaborate, but
we went from a baby that cried through his bath and a Mommy who was really stressed through the
bath, to a baby that likes to sit in his bath for a half an hour, happily splashing away.
**Update - I wrote that original entry in 2006. It's 2009 now and I'm still using this
tub with Owen. Owen is a small three year old, but even so this is a nice, big tub -
unlike the little infant tubs that they sell at Walmart and Target which they will outgrow
by the time they are one year old or less.
Receiving Blankets
Buy these by the case. They are incredibly useful for putting around the
baby's head to support it in all kinds of situations. We use them in the stroller to keep his head
from sliding too far to one side or the other. We used them when he was on his wedge to help keep
his airway open. It is also really helpful to roll one up and put it under their neck while you
are feeding them or just holding them. When they are really little and they can't support their
own head at all, it is sometimes difficult to hold them and keep their airway open. I found that
by putting a rolled up blanket under his neck things got much easier. Once they get a little bit
older you won't need them as much for neck support, but then they are still handy for a hundred
other uses.
Feeding
When it was time for Owen to start eating solid foods we weren't quite
sure what to do. Generally speaking babies need to have a fair amount
of head control to eat solids, and they need to be sitting up on their
own in a chair. With Owen's extremely large head, it was clear that
there was no way that he was going to be able to sit up on his own to eat.
So we started out with feeding him in his car seat. The car seat cradles
him quite nicely and we use a bendy bumper to help him keep his head in the
middle.
By the time Owen was eight months old he had enough strength to move him
up to the
Reclining 3 Stage Feeding Seat made by The First Years. You can buy these
at Target, or online at Amazon.com. These seats are great because they can recline. Owen
cannot sit straight up yet, it's too much weight. However the reasonable amount of recline
in the chair makes it possible for him to sit on his own while still being upright enough for
safe feeding. We do make use of the bendy bumper in this chair as well, just to keep him from
sliding completely over sideways.
Feeding - The Blue Chair
The reclining seat above worked well enough for quite a while, but when he got up
to the point where he needed to start feeding himself, it just didn't give him
enough support. It took most of his energy to stay upright and he had little
left to try and manipulate a sippie cup. Also, the tray was very sloped, so any
food we put on it would just slide down where he couldn't see it. It was clear
that we needed something different. We ended up with a
"Special Tomato" sitter.
It's nice because it's soft and its 5 point harness really supports him.
Now that we have it, I wish we had bought it sooner. The 5 point harness wouldn't
have fit him much sooner, it is just about too big on him still. It wouldn't have
worked for feeding then, but it would have been good to have had to just sit
him in it to practice sitting up. We had a bigger version given to us
when he was only a couple of months old by our physical therapist. The straps
were way too big, but I would just fasten the lap belt portion and then
sit right next to him to catch him if he slumped too far.
The floor base lets you control the recline, so we
started with it reclined way back. Even so he could only sit for a few minutes before
getting too tired. When he was able to sit for a while at one recline level, we
would move it so that it was straighter up and start all over again. This was
how we built up his strength. It would have been better to have had the
smaller one to start with though, because it molds to his body better than the big
one did even though the straps would have been too big even on the small one to
start with. Now he can sit in it for an hour or more at a time, which has let
him finally start playing with toys while upright and to start working on self
feeding.
The floor base lets you change the angle of recline to practice sitting, but it
also comes with straps to attach to a regular kitchen chair so that
he can sit at the kitchen table with us. It doesn't come with a tray
unfortunately, and most of the trays that you can buy cost hundreds of $$$ to
get one that can go up or down and tilt. I spent about $30 at Lowe's to get
the materials to make one. OK, it was $50 if you count the new router bit
I needed to make the slots to move the tray up and down, but I never count the
cost of a new tool in any project because I always figure I can use it for
"lots of other things" too. :-)
Strollers
With our daughter, who does not have hydrocephalus, we almost never used a stroller.
We carried her in a Baby Bjorn front carrier until she was too big for that, and then
we just plain carried her until she could walk. Somehow we just never got around to using
the stroller. We had bought one for her though, it was just a standard Graco stroller. We
still had it in storage and we got it out for Owen. While Owen can use the Baby Bjorn for
short periods of time, he isn't terribly comfortable in it and with his very heavy head
it isn't really feasible to carry him for long periods of time either. The stroller lets him
be comfortable as well as portable. For any infant you will need a stroller that can
recline, so any stroller that would be good for an infant will be fine for a baby with
hydrocephalus.
The problem that we faced as Owen got older and we started wanting to do more
and more outside, was that the plain plastic wheels on the little Graco just couldn't hold
up to the gravel on the driveway or the grass at the park or anything other than smooth
pavement or flooring. The poor little guy would get bounced around terribly on anything
uneven. We also know that Owen is going to need a stroller for quite a lot longer than
a normal baby, because his head size will keep him from walking until he body has time
to catch up. Given that he was going to be spending so much time in the stroller, we
decided to buy one of those jogging strollers that has the air filled tires.
There were a few issues with choosing one of those strollers. The first was that most
of them specify that the baby must be able to sit up on their own and therefore do not
recline. This would be useless for Owen. Secondly we drive a Honda Civic Hybrid
which has a big trunk for a small car, but it's still a small trunk compared to a bigger car.
Most of the jogging strollers had three big wheels and would not have fit into our trunk
very easily. And finally the cost of these things will bring tears to your eyes. Most of them
start around $200 and very quickly ramp up to $300-400+++ when you start adding any features.
We finally ended up with the
Baby Trend Expedition Extreme Jogger that we bought at Target. It has all the
features that we needed. It has a smaller front wheel than most joggers, so it fits
easily into our trunk (and is more maneuverable indoors). It uses a drawstring to recline,
so you can adjust it to any position, including almost flat. It has a five point harness which
I feel better about than the lap belts that came on most. It also only costs $99.00.
The price wasn't quite as important as the other features, but it doesn't hurt either. The
only complaint that I have is that his head rests on where the
straps are attached to the bed of the stroller and it looks uncomfortable. I am
cutting out a little blanket made from fleece that has two holes in it for the straps to
lay down under his head.
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