This was by far the hardest month for all of us as it
was just a month of waiting and riding the rollercoaster. And there were
multiple times this month where we thought you'd be coming home - you pulled
your feeding tube out and you were doing really well with taking food by mouth
and then the shift changed and the nurses were coming and going and busy and
your intake decreased and then you were off oxygen entirely for a day or so,
but the nurses and doctors soon realized you really do need it! You were really
congested this month, so everything stalled and slowed down. To be honest, it
was a discouraging month for all of us, a month where my mama bear came out and
we advocated hard for you and your care. And it's at the stage in the game
where you really have to advocate for your babe - you were stable so you didn't
get as much attention as you use to. And so began the rotation of nurses who
had never had you before, which is always hard as they just
aren't familiar with you. So we found ourselves talking to the charge
nurse and making our voices and preferences heard. And they did all they could
to at least get a nurse who had had you at least once in your 80 something
days. And I think at the beginning of the month - you were in a 3 baby, 1 nurse
rotation and they changed it to 2 baby, 1 nurse because you just required a
little extra time with feeding. Anyhow, we advocated more for you this month
than any other month, and we finally called a care meeting. And we
met with your primary nurse Dani, the hospitalist, and the charge nurse to
discuss a plan for you and we talked about you coming home with a feeding tube
and oxygen support. In all honesty, we would have loved for you to come home
without all that stuff, but once we got to the point where you were stable
enough to come home, we just wanted to bring you home, feeding tube and oxygen
and all. We were ready to have you in our home and under our roof and all our
boys in one place...together.
Growing // You started off the month weighing 5 lbs 7 oz and ended
the month weighing 7 lbs 10 oz.
Eating + Sleeping // You started the month eating 46 mls of fortified
breastmilk over 2 hours and ended the month eating 65 mls over 60 minutes, and
some of that was by mouth!! Some days were better than others with feeding, and
some nurses were better than others with feeding you. You ate best for your dad
and I, and one of the therapists fed you first to figure out your coordination
and how you fed best, and then she had me give it a go. And you did well. You
started off with really small amounts though with just like 5 ml and then 10
ml. But you'd get tired and your coordination would be off. You did a swallow
study this month to determine whether you were swallowing safely and they
found out that you are. So that was good! But they did cap your food intake to
20 mls by mouth and the rest by the feeding tube. But I think that lasted only
a few days before your dad and I advocated for them to take the cap off and just
see how you do with your intake.
And you started using a preemie
nipple and by the end of the month you were using a level 1 nipple as they
realized after your swallow study that you do better with a faster flow. But
they also discovered that milk gathers at the back of your throat, so we have
to pace you alot with your bottles and have you suck when there's no milk in
the nipple. All sorts of things we've figured out about you!
And you've started doing some of your naps in the mamaroo!
Wearing //
You are wearing newborn diapers and they have you in newborn clothes!
Loving // You
are still loving those snuggles and you're just more alert and aware of those
around you! But it's hard to tell what you really love right now.
Loathing //
Maybe your reflux? It's pretty bad, not that you spit up much, but it just
hurts you. But it's hard to tell what you don't like.
Milestones // They gave you caffeine to
help your apnea! They decreased your oxygen from 2 liters to 1/2 liter and then
they dropped it further to 1/8th of a liter and then they brought it back up to
1/2 liter because you got sick. The reality is you'll most likely be on the
oxygen for awhile as they think it helps your stamina with bottle feeding. You
had another hearing test and a scan of your heart! And all came back good.
And you had a terrible episode this
month that would have set you back five days if you were close to being
discharged, again it's reflux related and you just hold your breath. But that
was at the beginning of the month, and toward the middle of the month they
started you on reflux meds and raised your bed, and by the end of the month it
was pretty much managed with the meds and the wedge. The only sign you have of
reflux is congestion and you do get uncomfortable when eating and after eating.
This
was the month the Drs. said we could start prepping to take you home. But you'd
be coming home on oxygen and with a feeding tube! But you're old enough to go
home and you haven't had any events in days. And so we began talking about the carseat trial, the training of inserting a feeding
tube and how to deal with oxygen.
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