aren’t you going to wear a coat?

Today started out with Grandma arriving at our house at 6:30AM (like she does most days she doesn’t work) to get to the hospital in time to wake Sophia for her 7 o’clock feeding.  On the way out the door, she said to me:  “Aren’t you going to wear a coat?”  Without hesitation, I grabbed a coat.  Guess you never stop parenting, even when your child is 36!   Hopefully Sophia will be as willing to wear her coat just because Mom said so (fat chance, I know).  

 

In rounds today, the discharge nurse decided Sophia should be put on “cue based feeding.”  This is a step closer to “ad lib” feeding, which is when they allow the baby to take as much as she can whenever she wants.  This might get tricky at some point as the cardiologists have limited her fluid intake.  Cue based is reliant on cues from the baby, which is tricky because she doesn’t really cry– today we have just been feeding her whenever she wakes up.  If it doesn’t look as if she is reaching her daily caloric requirement, they go back to feeding her through her NG tube.  She also isn’t allowed to go more than 4 hours before we attempt to feed her (she’s been fed every 3 hours until now).  This seems tricky, because the idea is that she gets hungry so she wants to eat and will be more motivated, but when she ends up getting gavaged to keep up with the minimums, she doesn’t really get to the point of being hungry.  On the other hand, if she doesn’t have enough calories, she won’t have the energy to want to eat.  So, we are trying to get this to work and trying to figure out how pumping fits into this whole plan when we sort of have to be ready whenever she is.  Our nurse thought it was a little early to try this, but we’re giving it a shot.  

 

They also want to determine whether or not she really needs reflux precautions which would involve going home on a monitor.  So far she hasn’t emesised all day with her bed somewhat lower and sleeping on her back or side, but we’ll have to see.  She still has gagging spells, but seems better able to keep the food down on her own.  

 

Sophia got three new roommates today.  The one in the next bay is one pound, one ounce & only 11 inches long!  She has tubes everywhere and bubble wrap type stuff covering her in her isolette.  She had a twin sister who didn’t make it.  It was so sad to see their mother wheeled in on her hospital bed, knowing that she lost one daughter and only being able to touch the other through the small hole in the isolette.  It really reminds you of the vulnerability of life and about how lucky we are that our baby has now hit 7 pounds.  There are so many tiny little ones here–Sophia is the big girl.  The nurses have nicknamed her “chubby.”

 

They are starting to talk about moving us to the “West Wing”, which means we would have a private room and be the primary care providers with a nurse to assist us. When we first transferred to the NICU we were advised that we shouldn’t move there until we have a better idea of when we’d be able to take her home.  It seems a little premature at this point, but the space and quiet would be really nice.   We are a little suspicious of their motives for moving us again but it would be nice to have our own room and be able to sleep with her again and it would make it more comfortable for Sophia to have visitors.

 

I am off to bed. Good night!