Monday, August 8, 2011

6 Weeks

Weight Check
William - 3lb 3oz
Aaron - 2lb 11oz (in case you missed it yesterday)

General Update

The boys had a good visit with Stephen and Anna this morning, and then I headed in after work.  This schedule should work out fairly well, as the boys will have mommy or daddy there throughout most of the day when Stephen is off.  William is getting a whole ounce of milk (30ml) every 3 hours, and Aaron is up to 25ml.  They are both still battling reflux, but they seem to be handling it a bit better.

Head ultrasound day!  This is still my least favorite day of the week, even though the past few have been stable.  William's ultrasound looked good - his bleeding is stable, and the ventricles appeared smaller.  Aaron's ventricles are also stable, and the bleeding in the tissue has resolved.  As somewhat expected, this has left a small cyst (hole in the brain) where the bleeding resided.  The cyst is located at the top of the right ventricle, in the white matter which controls the left lower body movement.  White matter controls motor skills and grey matter controls intelligence.  While we wish the cyst didn't exist, it's better than it could be.  We're thankful that it's in the white matter, just on one side, and appears to be small.  Again, this could mean nothing in the long run, or it could mean some form of cerebral palsy or developmental delays.  The spectrum is wide and it's not predictive of anything.  It just is what it is. 

A little more about the brain bleeds (and to whomever is reading this to Goo: you can skip this part) - I haven't been too detailed in this subject, because it's the one that scares us the most and has the most unknowns.  Googling "Intraventrical Hemorrhage" results in a mix of negative clinical outlooks and positive real life stories.  The bleeds are generally caused by changes in oxygen levels and blood pressure.  Preemie heads are very fragile, and changes in pressure can easily rupture the veins in the brain.  Ventilators are a common cause, but necessary for the baby's survival. 

Basically, grades 1 and 2 are associated with no long term effects.  Grades 3 and 4 are more severe and generally associated with long term developmental issues, with 4 being a class of its own as the bleeding is outside of the ventricles and into the tissue itself.  A common effect of 3s and 4s is hydrocephalus, which (if needed) would be relieved via spinal taps, reservoirs, or shunts in the brain.  We are lucky that neither boy has developed this condition, as it's one less thing to worry about.

With the first ultrasound, William had a bilateral 3 and Aaron was a bilateral 2.  We weren't overly concerned about Aaron at the time, but were frightened for William.  Since then, William has been stable and is now resolving, and the bleed actually only affects one side.  He does have questionable periventricular leukomalacia (PVL), but the ultrasound is still fuzzy in this area.  If he does have it, it could also affect the motor function in his legs (or do nothing).  Sometime between the first and second ultrasound, Aaron developed a grade 4 bleed, which is not a worsening of the grade 2 but an entirely new bleed.  We were at first told that it was on both sides, which was heartbreaking, but again it was actually just on one. 

Ultrasounds can only show so much - both boys will have MRIs before they are discharged, which will provide greater detail into any questionable areas and give us a better picture of what's going on.  I will repeat that none of this is predictive.  Brains, especially preemie brains, are remarkable and can learn to compensate for damaged areas.  The boys will be receiving early intervention services as soon as they come home, which will help to more quickly identify any areas needing assistance and allow us to provide them the best therapy.  Please continue to pray that they end up with minimal effects.  Our little fighters have come so far in the past 6 weeks!

1 comment:

  1. We are praying for your little fighters! As we told you, Claire had a 3 and a 4. She is doing really well and just celebrated her 5 month "adjusted age" birthday yesterday. The effects of bleeds are so unknown. Early Intervention does amazing things!

    Paul, Martha and Claire Sharkey