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Posts Tagged ‘ROP’

I can’t believe how quickly this year has flown.  Rob and Jaden have ventured back to school, leaving a bit more time on my hands to write.  I’ve been busily contributing to Writers Round About as well as creating my own site and I’m working on a few different articles for parenting magazines.

Simon has been fighting a bit of a cold and has been back on oxygen for about a week or so.  I have a feeling that’s how our winter will go; off and on.

All in all, we’ve been a busy bunch.

This afternoon I got the call I’ve been waiting on for a few weeks.  Simon’s glasses were finished!  I headed out just before five to pick them up.

Yes, I took pictures.

Yes, I’ll share!

But not yet…

Simon is definitely not sure what to think of yet another item on his face.  He’s done everything he can to get the glasses off and since he needs to wear them for at least one hour today, we have put socks on his hands until it’s time to take the spectacles off.  The poor bug isn’t sure what to think, but it’s pretty amazing to watch him look at toys in a completely different light.

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Surgery itself was “text-book perfect”. Simon did have a poor reaction to phentinol though.  It took him a full 24 hours to really begin to snap out of it and finally came off the ventilator yesterday evening.  Simon is back on the CPAP at a rate of six.  He was ready to step down to four pre-surgery, so we still have a bit to go before Simon is back where he was.  Once back on track, we will start progressing forward again.

Simon’s Renal ultrasound came back and is still showing some “debris” but structurally he looks good.  No abnormalities were detected.  Now we need to determine the root of his bladder infections and squash it.

Simon was looking pretty pasty yesterday.  They drew his crit levels this morning and we are waiting to hear those results.  More than likely Simon will need another blood transfusion.

Aside from that all is well.  Jaden and I are going to venture off to the Zoo this afternoon and spend our morning with Simon.  Hopefully it will be a very relaxing day for us all.

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Retinopathy

Simon has Retinopathy of Prematurity (ROP) and will go through surgery today at 1:30 to correct that issue.  He will be placed back on the ventilator for surgery.

What is Retinopathy of Prematurity?

The retina is the inner lining of the eye.  It receives light and turns it into visual messages that are sent to the brain.  If you think of the eye as being like a camera, the retina functions as the film.  Blood vessels that supply the retina are one of the last structures of the eye to mature.  These vessels have barely completed growing when a full term baby is born.  This means that a premature infant’s retina is not yet completely developed.  For reasons not yet fully understood, the blood vessels in the immature part of the retina may develop abnormally in some premature infants.  The name for this is Retinopathy of Prematurity (abbreviated ROP).

University of Colorado Hospital ROP informational Parent Instructions (NICU 48234 M/q (9/04) DOD)

Simon has developed ROP and surgery is necessary as the blood vessels create scar tissue that will pull the retina out of it’s normal position and can cause severe loss of vision or blindness.  The laser treatment is similar to Lasiks but does require that Simon be completely still, under general anesthesia, and intubated.

When Simon comes out of surgery and the anesthesia is worked out of his system, he will go back on the CPAP and back to life as he knows it.  Simon has made some amazing strides, though concerns are still present.  Simon will:

  • Be able to cycle from CPAP to high flow oxygen
  • Begin to nipple twice a day with no more than 10mL at a time.

These are huge strides for Simon.  It brings us once step closer to going home once he’s able to take all feedings by mouth and is off the CPAP completely.  We are still fighting bladder infections which is highly uncommon in boys.  Both reinal (kidney) ultrasounds have shown “debris” in the kidneys and further testing is needed to help determine exactly what it is.  Unfortunately, they won’t be able to do additional testing until the current infection is gone (and another doesn’t develop).

We will update again after we hear the status reports from surgery.

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