Tuesday, August 2, 2011

No more PICC Lines! And a change of heart.

General Update

Today was pretty similar to yesterday in regard to the boys' behavior.  William is now a superstar and breathing and eating like a champ.  He maintained his sats throughout the day.  Aaron's sats are still very affected by the reflux, and his breathing was up and down all day.  This is common with preemies, as with full term babies.  While he may not outgrow the reflux any time soon, as he grows his body will be able to deal with it better so that he doesn't stop breathing.  Along with the reflux comes spit up, which is now covering my shirt :)  But it does make him feel better.  What was the saying in college (and I can honestly say that I don't know this first hand)?  Puke and rally?  He's got that down. 

Feeds went up again, and the PICC lines came out for both boys - excellent steps forward.  They will be getting all of their feeds through their tubes, and the caffeine (to help them remember to breathe) will be mixed with the breast milk.  The feeding tubes are just tiny tubes running through their noses into their bellies.  They were originally in their mouths, which is more irritating.  They would get just an IV if they need antibiotics in the future.

Both boys received some time with the occupational therapist today.  She went over a few positioning tips to help correct postures that have been created in the NICU.  When the babies are in the womb, they are basically curled into a little ball.  Their shoulders round in, their heads are in line with their spine, and their hands generally stay at their midline (middle of their body and close to the face).  In the isolette, their shoulders start to lose the roundness and rise up, their heads can get pushed back from the CPAP, and their hands stray from the midline.  We'll learn how to keep them positioned properly, and will eventually learn infant massage and stretches.  She checked out the tone and reflexes for both boys, and both are appropriate for their age. 

Change of Heart

The big news for the day came this morning...our primary nurse asked if we had toured MRMC's NICU yet, which we have not.  We were there very briefly when the boys were born, prior to their transfer.  All that I remember about it is that it's very small compared to St. Mary's, and very dark.  She suggested that we tour it in the next day or two, which immediately made me ask why - I thought we couldn't move them for a few weeks?  Apparently the doctor of the week feels otherwise, and we could move them as early as the end of this week!

Hold the applause.

As much as I wanted to move them back to Mechanicsville, to be 20 minutes closer to home and just 5 minutes from work, I don't think they're ready.  The doctors are the same, but the nurses are different, and the level of care can't compare to St. Mary's.  MRMC sent the boys away for a reason.  They don't take singletons under 28 weeks, or multiples under 30 weeks.  William and Aaron will be 31 weeks tomorrow.

My understanding from talking to several nurses, including one who used to work there, is that they're used to dealing with babies who are mostly stable.  They are trained by the St. Mary's staff, and St. Mary's is the leader with more progressive care.  They only have 2 or 3 nurses per shift, and no secretarial staff, so they are also answering phone calls.  When one nurse goes to lunch, there could only be one nurse available.  What would happen if both boys are having an apnea/brady spell?  As one nurse told me, and not in the most positive tone, "they could handle it," but is just "handling" it enough?  Other negatives to moving now - the therapists are not there every day, the surgeons are not there, and if anything serious did happen they would be moved back to St. Mary's anyway. 

Also, we now have a relationship built with St. Mary's.  We know the nurses; the nurses know us and, more importantly, the boys.  We'd have to learn a whole new set of personalities, and it could take a little while for the comfort level to build back up.

The two benefits that I see are:  1)  It is dark and quiet, so they would have less stimulation, which would be awesome for them.  St. Mary's is busy.  and 2)  It's closer to home.

Our primary nurse and other individuals have been pushing for the move for us, since I've been adamant about it since day 1.  We will go ahead and tour the MRMC NICU this week.  At the end of the day, though, we've decided that our convenience is not worth the potential downgrade in their quality of care.  (Obvious statement, I know).  We will re-evaluate in a few weeks and see if we want to move them then.  I am appreciative of that flexibility.  That said, if we get a few weeks down the road and they say the boys can come home in another week or two, we'd probably just stick it out at St. Mary's.

As mentioned above, the boys will be 31 weeks tomorrow!  The time is flying.  Not to start predicting when they will be coming home, but for the sake of conversation let's say that maybe perhaps they could come home around 36 weeks...that's only another 5 weeks ahead of us.  It's funny to think "only" in regard to 5 weeks, but having been through that time already it doesn't feel long at all.

An extra prayer request for today:  Our NICU friends should be bringing their 24 weeker (now about 38 weeks) home on Sunday - please pray that she has an excellent week and can begin her new life home with mommy and daddy as expected!


  1. Helen,
    Julie and I have been keeping up with everything on your blog and I can say is one day you and this story will be a Lifetime movie of the week. Your strength is amazing. We will keep everyone in our thoughts.

    Hunter and Julie

  2. I was in the same situation with my twins, my commute was 2 hours and I was away from my family all week though. I had the same feelings about transferring closer to home and decided to just stick it out at the higher level nicu. A word of caution though, if your insurance company catches word that they are ready for transfer you might not have a choice, they will save money at the lower level nicu and force you to transfer.

  3. Your stamina and positive outlook is remarkable:) Great update...keep the good news coming, boys!