Tuesday, November 29, 2011


I promised Thanksgiving pictures in the last post, but I'm going to share a few different pictures instead.  A friend's photographer friend came out and spent a good amount of time with us and captured cute pictures of the boys. Here are just a few...I'll share more when I have them :)  William is on the left in the top two pictures; Aaron is on the left on the bottom one.

Friday, November 25, 2011


Weight Check
William - 10lbs 6oz
Aaron - 9lbs 13oz

I feel like these posts are becoming very repetitive these days...which is a good thing!  The boys are steadily growing and doing well.  They received another Synagis shot (RSV vaccine) today, but otherwise have no appointments for a few weeks.  William will do a trial off of his oxygen before that next appointment, so we'll see how that goes.  I'm cautiously hopeful that he will be at least partially off of the oxygen some time soon.  I do have cute pictures of the boys from Thanksgiving that I will post within the next few days, although most friends should have seen them already on Facebook.  Aside from the oxygen, by appearance alone I don't think most people would guess their battles to get to this point.   Both boys are smiling now, and quick little moments like William laying half asleep on my chest, flickering open his blue eyes, recognizing me, and turning his whole face into a grin...then nodding back off to sleep again...fill my heart with joy and peace.  We have our babies home, they are healthy, and we are happy.

Sunday, November 13, 2011

Quick update

Weight Check
William - 9lb 1oz
Aaron - 8lbs 10oz

As you can see, they're still growing...and eating...and eating...and eating!  The boys are doing well.  The neurologist appointment mentioned in the last post went well - they are currently on track for their adjusted age, and will continue to be monitored.  Aaron has another head ultrasound scheduled in a few weeks to make sure that his ventricles haven't enlarged more unexpectedly. 

William also had his follow-up eye exam last week, and, like Aaron, his ROP is GONE :) However...there are now anecdotal incidences of ROP reoccurring several months down the road with Avastin. This is not supported in official research, but the boys will now be seen again in one month instead of six months.  I thought our trips to Stony Point would be over for a while!  I did ask if this meant that laser surgery would again be preferred, and the opthamologist assured me that he would still choose Avastin if it was him.  If the ROP does come back, though, laser surgery would be the next step.  Prayers that it does not return!

I believe William's room air trial is the only other update - it will happen next month, before their next pulmonologist appointment.  Hopefully by then he will be ready to come off of the oxygen.  It's not horrible, it's just somewhat limiting and the tubing hides his beautiful face :)

Friday, November 4, 2011

One month home

Weight Check
William:  8lb 3oz
Aaron:  7lb 13oz

Still growing :)  The boys are doing really well.  I would love to type a good long update... but they are both currently in my lap after their last feeding of the evening.  They both have reflux, so we hold them upright for a good while after the feeds.  Usually William will struggle with the reflux and Aaron is a happy spitter, but tonight is the opposite.  My goal is to have them both calm and in bed by midnight, and to stay asleep until 3 or 4 so mommy can get some rest!  Really, that's the biggest challenge...getting sleep.  Everything is going great with the boys.

We had the developmental clinic visit yesterday, which did show that both boys are a bit tight - interestingly, William is tighter.  Physical therapy will help this and we will have a schedule in place after the next Early Intervention visit next week.  We visit the neurologist tomorrow - I'm really curious as to what he will say.

William is now on a nebulizer due to a bit of chest congestion, which will hopefully clear soon.  The pediatrician was going to trial him off of the cannula, but now we wait.  Honestly, I don't think he's ready to be off of it yet anyway.  His sats drop lower than desired when I've taken it off of him just to check.