Thursday, April 26, 2012
Aiden
& Ryan are 7 months old/3.5 months adjusted, and between the two of them
we’ve been through 9 surgeries, and have at least 3 more on the horizon. So far, we’ve dealt with a PDA ligation, a
reservoir placement, two shunt placements and revisions, a bilateral hernia
repair and two ROP laser surgeries. It
is always scary when you’re told you baby needs surgery, especially when that
baby weighs less than 2, 3 or even 4 lbs.
The
first surgery we dealt with was Ryan’s tapping reservoir. When he was a month old, he was diagnosed
with hydrocephalus which is a direct result of his IVH. He was way too small to have a shunt placed
(which is a permanent device made to shunt spinal fluid away from his
brain). In lieu of tapping his brain directly,
they placed a reservoir which is an access point through which they can more
safely draw fluid out of the ventricles in his brain. While all this sounds very scary (it is brain surgery after all), we were
relieved when we got the call that his surgery was scheduled. Although there were, which of course we were
aware of, the benefits outweighed those risks.
That is the case with most
all surgeries you face in the NICU.
We knew that this would bring our tiny baby relief and would give him a
chance to live.
That first
surgery paved the way for our outlook on all further surgeries. Of course we don’t want our children to go
through anesthesia and painful recovery and all that jazz, and we absolutely
fear the worst and have knots in our stomachs for the duration of every
procedure, but without these surgeries our children would likely not be
alive. I thank God every day for creating
people who are smart and disciplined enough to become surgeons, because really,
we owe our lives to them. We owe our
children’s lives to them.
We
always say that Aiden & Ryan have gone through more surgeries in the first
½ year of their lives than we and our families have gone though in our entire
lives, combined. But that is what makes
them special little miracles that we were blessed with on that September
day. They are, and forever will be, our
heroes. They have showed us that
anything is possible. And if they
I have to suffer through another few surgeries to make their lives better, I am
willing to do that. Because really,
surgeries are worse for parents than they are for babies. Case is point: here is a picture of Aiden, hours after his
shunt bilateral hernia repair. I don’t
know if I’ve ever seen a happier boy.
A few things that might be helpful if you’re dealing with
surgery after NICU:
1.
Most hospitals require preemies to spend the
night after a surgery, even if the procedure is usually outpatient.
2.
Your LO will probably be scheduled for an early
morning surgery because of the eating restrictions. If not, you can probably request an early
slot.
3.
You will be asked to feed your child shortly
after they wake up from anesthesia. They
do this to make sure there is no nausea/vomiting. It’s also a requirement that your child
resumes a normal eating schedule prior to discharge. I would recommend bringing bottles, formula
and water from home (unless, of course, you BF). The hospital will provide these items
eventually, but in the meantime it is good to have your own. Also, your baby is probably used to the way
formula tastes with the water you normally use.
You want to keep everything as consistent as possible.
4.
You will probably spend a few hours in recovery
before you get a room for the night.
5.
Beware, the nurses taking care of your LO for
the night will likely not be the equivalent of your favorite NICU nurses. Your child will probably be in the PICU for
recovery, or the regular children’s floor, so the nurses don’t deal with infants
on a regular basis. In short, we are all
used to way the NICU is run. This will
be different. Not bad, just different.
6.
Bring blankets, books, a toy or two, pacifiers,
and any soothing items that you have for baby.
Also bring a going home outfit for your LO.
7.
Bring warm socks, a sweater or blanket, cell
phone charger, laptop, books/magazines, drinks and snacks for yourself. You will need to pass the time as you wait
for discharge.
8.
Bring any medications your child currently
takes. While the hospital provides
these, they may take a while to get them to you.
9.
It is ok to tell the doctors and nurses what is
normal for your child in terms of disposition, eating habits, crankiness. If something they notice is delaying
discharge, and you know that this is normal for your child, speak up.
10.
Once you are comfortable, and the doctors agree
that discharge is a good idea, speak up and ask multiple times when you can go
home. Otherwise they will forget about
you and you will spend your entire day waiting for them to print four pieces of
paper for you to go home.
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