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.



Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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