7.30.2012

10 surgeries and counting (part 1)

Our boys have been through many surgeries, most of which required general anesthesia.  All of which have a risk of infection, death, etc.  Ya know, all that good stuff that comes with surgeries.  The easiest way for me to document them all is to just list them.  I apologize in advance for this uninteresting format.

Aiden's surgeries to date:

November(ish) 2011 - PDA ligation

This involved an incision on his back through which the surgeon would locate and snip the PDA, which is a blood vessel that brings blood to the heart.  Full term infants also have PDAs, but they usually close on their own.  The problem with PDAs not closing is that because they bring blood to the heart, less blood goes to the lungs.  The biggest risk with this surgery besides the obvious, is vocal chord paralysis.  Apparently a nerve that is connected to the vocal chord lies right over the PDA.  In order to snip the PDA, the surgeon has to move this nerve out of way.  Imagine if you will, this beast of a surgeon with huge hands and bulging biceps, operating on a baby who is barely 3 pounds.  All went well, he recovered after a few days, and has a pretty cool scar to show for it.


After the PDA surgery - You can see his incision & staples here
December 2011 - shunt

We hoped Aiden's brain bleeds would reabsorb and not result in Hydrocephalus.  At this point Ryan was already diagnosed.  Unfortunately he didn't get away with it.  When his hydrocephalus developed he was still too little to be shunted.  Dr. Mittler, our neurosurgeon, really wanted Aiden to reach 2 kilo before he operated, but we had to do something because the pressure was just building on his brain, causing damage.  So Dr. Mittler opted to straight tap Aiden, which involved inserting a needle directly into the ventricles in his brain to extract some CSF.  This released some of the pressure on his brain, which also gave him relief.  Hydrocephalus, when not treated, not only results in brain damage, but also causes the patient to have killer headaches.  It was also affecting Aiden's ability to maintain his breathing and heart rate at a normal level.  Aiden was tapped this way twice before he finally got big enough for the shunt procedure.  Again, risk of infection, death, yada yada yada.

Dr. Mittler is a phenomenal surgeon and all went well.  Unfortunately, Aiden's body seemed to be rejecting the shunt tubing.  To this day we're not really sure what happened, but he developed some fluid around the tubing near his chest, which resulted in a huge bruise which basically obstructed the shunt.  Dr. Mittler didn't want to operate just yet, he wanted to wait and see.  So we were back to having Aiden tapped daily, only this time they were tapping him through his shunt device and not directly through his brain which is very, very dangerous.  Eventually the bruise went away, and the shunt began working correctly.

Ugh, I'm tired.

::I have a photo of Aiden after his shunt surgery, but I will not post it.  He really didn't react too well to the anesthesia this time, and the surgery was much more involved.  He didn't look like himself, and I don't think it's appropriate for this blog.::

January 2012 - laser surgery for ROP

Premature infants are at risk for ROP (retinopathy of prematurity) due to their need for breathing support.  While oxygen was allowing our children to survive, it was also causing abnormal blood vessel growth in their eyes.  Another risk factor for ROP is extremely low birth weight and hypoxia (oxygen deprivation).  Such abnormal growth can result in blindness.  (Fun fact:  Steve Wonder was a preemie and his blindness is a result of ROP.)  In short, the laser surgery killed off the abnormal vessels.  Had they been allowed to grow the way they were growing, they would have pulled on Aiden's retina, most likely resulting in detachment and blindness.  Most of the time this proceudre is successful and does preserve vision.   There may be some loss in peripheral vision and most children will require glasses.  Small price to pay.

At this point we see a pediatric opthamologist every 6 months.  Our next visit is in September.  It's all a wait and see game at this point.


Aiden had his ROP surgery the day of Ryan's discharge.  This is our first family pic, taken on that day (Jan 20, 2011)

April 2012 - shunt revision due to malfunction

At a certain point my mom mentioned she thought Aiden's head looked bigger.  Our pediatrician agreed.  This is one of the main things to look for with hydrocepahlus, as a sympton of shunt malfunction.  Some other symptoms are vomiting, extreme irritability, and sunsetting eyes (baby looks down all the time) - none of which Aiden had.  We went to see our neurosurgeon the Friday of Easter weekend, who checked his shunt and knew immediately that it had stopped working.  He told us we need to operate tomorrow.  We couldn't get on the OR schedule because of the holiday, so I was instructed to head to the ER the next morning at 5am, and Dr. Mittler would meet there.  We basically staged an emergency surgery.  Again, risk of infection, death, blah blah blah.  It turns out that Aiden's shunt was completely obstructed.  A piece of tissue begain growing into the tubing and blocked the flow of CSF.  He was in pain this whole time (from the pressure on his brain) and barely made a peep.  Let me tell you, my son is a warrior.  He woke up and needed a bit of oxygen, but you wouldn't even know he just had brain surgery.  Such a strong boy.  All he needed was some tylenol and he was golden. 


Minutes before he was taken back to the OR

April 2012 - bilateral inguinal hernia repair

All babies are at risk for hernias, but preemies are at an even higher risk.  This is true for a lot of things, simply due to the fact that they weren't given the chance to develop properly.  Aiden was discharged from the NICU with something called a hydrocele.  Basically he had fluid building up in his scrotum because the opening in his scrotum didn't properly close after his testciles descended.  Hydroceles can resolve on their own or result in a hernia, where the intestines get lodged in this opening.  Aiden's hydrocele did not resolve, so off to the children's hospital we went.  Two small incisions, some light anesthesia, a night int he hospital, and baby boy was fixed.  I swear, this kid knows the drill now.  Surgery, what surgery?


A few hours post-op.  He had an IV in his arm that they covered with a sock :)
May 2012 - tubes in his ears

Many infants get tubes placed in their ears in order to prevent ear infections, which can be caused by fluid build up.  Aiden got tubes because his cleft palate pretty much guarantees there will be fluid build up.  This time we didn't have to spend the night in the hospital.  It was a 15-minute procedure, and he was on his way home in no time. 


A little upset.  His ears were probably sore :(
Unfortunately, Aiden faces a few more surgeries.  His cleft palate will have to be repaired pretty soon, in order to preserve speech development.  Most celfts are repaired by the time baby is one.  We have some more time though, because Aiden has to make weight.  He has another 3-4 lbs to gain before any surgeon will perform the repair.  He will probably have two separate surgeries within the next year or so and then when he is around 7 years old and is getting his permanent teeth he will need dental work, because his cleft reaches his gum line.  He's got this though.  No worries.  He told me he isn't scared.

To be continued...

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