Saturday 12/13/14

The last two days have been nothing short of wonderful!   Truly feel like Christmas came early this year – and Mason really believes that Santa brought Ava home to us.  We have had a house full of family – Nana, Mimi, Big D, Aunt Ben, Kendra, Sarah B…. all helping us to get two months of gear put away and figure out our new normal – with 3 kiddos! 

Big brothers Mason & Ryan have very different views of how this new sister situation should go.  Mason, our tender hearted fella, is always asking where Ava is, brings her toys to look at and sits close to her so he can “chat”.  Ryan on the other hand, well we can say piss and vinegar has gone to a new level.  We are not only in the phase where “no, Mommy” is his favorite phrase but he has taken to running in the street, playing with outlets, and raiding drawers for items such as hairspray and butcher knifes.  Oh yeah, definitely caught him with the butcher knife in the kitchen.  Talk about heart attack!  Matthew and I are meeting him with some serious tough love! 

So a lot of people have been asking - the reasoning behind coming home and how we came to that decision…  I sat with Jill and Liezel this past Tuesday night in Ava’s hospital room – crazy in this short time I find them friends – who happen to have had a huge hand in saving our little girl.  They explained that Ava is now really like any other 2-month-old baby.  Yes she has serious concerns with eating and we need to be really cautious with keeping her away from germs – but the latter is really every baby.   The feeding aversion is scary as I said before; it is so unnatural for a baby to not want a bottle.  But both nurses were very confident that Matthew and I could handle the NG tube on our own and in the end Ava would actually be much more successful in her own home.  One of the largest reasons is that we would wait and feed Ava when she was actually hungry – novel idea!! 

Unfortunately due to the structure of a hospital they require her to be fed on a pretty strict schedule – even going as far as waking her from a dead sleep to feed her… and in our house we live by the phrase, “never wake a sleeping baby!”  Seemed pretty cruel to me! 

In the last two days Ava has actually gone from eating about 40mls to about 50-60mls per-feeding by mouth (which we call “PO”).  She tells us that she has had enough in a couple of ways – playing with the bottle, “shutting down,” which looks like she is sleeping but it is a fake out or she just screams at us.  We have made a goal of trying each feed for about 45 minutes.  Once she is done we hook her up to the NG tube.  They have taught me to do everything she will need in regards to the NG – from programing a basic feed to replacing the actual tube that runs from her nose down to her stomach.  There is a lot of comfort in knowing that she does take over 50% of her feedings from a bottle at this point so in the event she pulls the tube out it is not an emergency to get it back in. 

The plan going forward is to continue with the feeds and closely track/journal her progress in regards to feeds.  We are roughly noting her feeds, BMs and sleeping to see if there is any trend for best feeds/worse of the day.  She will also start taking a Breast Milk Fortifier, which will help her gain a little extra weight for when we do start weening her off the NG.  Doc wants a bit more weight on her than normal so that we have a little wiggle room.  Just like all of the oxygen, nitric and drugs we will very slowly take away the NG but we need to get her PO percentages a bit higher first. 

We are so grateful for the outpouring of well wishes since we have been home!  Can’t thank you enough!  XOXO