Saturday, July 9, 2011

Breathing Again

To be quite honest, we've been more than a little shaken up since the news on Wednesday regarding the brain bleeds.  I had the chance to speak with the neurologist today, though, which eased our fears a bit.

But first things first :)

This morning was exciting with Aaron's first bath...not his first, but the first given by us.  There are so many of their firsts that we'll miss, so I'll take what I can get :)  He will apparently be easier to bathe because his picc line is in his arm - the nurse just puts a glove around his arm to protect it.  William's picc line is down near his foot (which is why I neglected to see it the other day), which is harder to cover.   As you can see in the picture below, he goes into the tub completely swaddled, which helps keep him warm.  Only the body part being washed is uncovered.  He did well :)

We received the results of the ECHO from yesterday:  In other good news, while Aaron still has the PDA, it has not increased in size.  He's back on his 2ccs of milk every 3 hours.  William is still plugging along at his 6ccs...not much has changed for him today, which is good.  Both boys got in some good cuddle time with us.  I love my snuggle buddies :)

Also, the nurse strongly suggested that we keep the boys out of daycare through the spring to minimize exposure to RSV and infection.  My tentative plan had been to keep them out through the end of the year, as I am fully planning on returning back to work (although perhaps in a reduced capacity through the end of the year, yet to be determined).  If anyone knows a good nanny, or perhaps nurse or nursing student, who is experienced with infants and looking for a temporary position through the spring, please let me know.  We are going to start looking for someone to come to our house 3 days a week (the days would vary depending on Stephen's schedule).  I'm not sure yet if this person would start in January or perhaps a little earlier to assist with my schedule.  We would want to send them to daycare when they are old/strong enough, as we love Anna's school and the socialization would be good for them.

Okay, on to the neurologist visit:  As I was hanging out with William and pumping this afternoon (Stephen had gone home with Anna), I could hear some new male voice on the other side of the curtain talking to the nurses about a few of the babies in the NICU, including William and Aaron.  I could only hear bits and pieces, but enough to figure out who he was.  The nurse popped her head in to let me know that it was indeed the neurologist, he had reviewed William's and Aaron's head scans, and this was a rare visit as he is usually only there sporadically and at night.  As soon as I was presentable, I waited anxiously for him to come introduce himself so we could chat.

The chat went better than expected.  Based on the last conversation with the NICU doctor, I was prepared for more bad news, specifically about Aaron.  This doctor, however, was realistic.  He said that we already know the possibilities, so there's no need to go over those again, and that it's really too early to start predicting things.  Also, the bleeding is not at the level that the NICU doctor had indicated, and it should be stopped unless there's a secondary bleed.  We don't have a full picture of what's going on yet, and won't until the bleed starts to absorb.  Aaron will get an MRI next week to try to get that better picture, although it's still early in the game for him.

Both boys will continue to be monitored for cerebral spinal fluid build up.  Neither needs further action at this point, but if they did, the possibilities would be lumbar punctures (like a spinal tap), reservoirs, or shunts, to drain the fluid and prevent pressure from building up.  Again, we're not there yet, but we know it could happen in the future.

Lastly, the neurologist said that both boys are survivors.  They are doing exceptionally well in every other aspect and are mostly stable. We have a lot of time to work with them and get any help they may need in the future.

I was incredibly appreciative that he did not, and does not in general, dwell on any possible outcomes.  He was straightforward with the actual issues, and actions that can be taken.  This was a bright contrast to the dark delivery of the NICU doctor. 

I feel that some of our prayers have been answered today just to help give us strength and keep a positive outlook. Let's continue to pray for the little ones to stay healthy and for the best possible outcome for both of them :)

1 comment:

  1. Who is the neurologist, if you don't mind me asking?