We've had a few appointments the past couple of
weeks, so I'd say it's time for an update!
Pulmonologist (Lung Doctor)
Both Anthony and Aryanna went to the pulmonologist
a couple of weeks ago. He said being on oxygen is kind of a fine balance: they
still need it to breathe, but all the time they've spent on oxygen causes
scarring on their lungs. So, the sooner they can come off the oxygen, the
better. Gaining weight and growing also helps produce new, unscarred
tissue so they're doing great in that department! He left both of them on
half a liter of oxygen for now. We'll go back in 6 weeks and re-evaluate
then. In six weeks he will also order a sleep study where all 4 of us
will pack up and spend the night at a sleep clinic. Everyone breathes
differently at night than they do during the day, so as we start weaning them
off the oxygen the sleep study will tell us if they may still need oxygen at
night even after they've come off of it during the day. He also stressed
what our pediatrician has been telling us: their lungs and immune systems are
still extremely fragile. So that means we can't take them to public places
(even church) until probably April or May. If they catch anything,
especially any respiratory illnesses, it could easily land them back in the
hospital.
Head Ultrasound
Anthony had his follow-up head ultrasound last week
and the hydrocephalus (swelling) is stable. His fontanelle (soft spot)
still feels good and he hasn't needed any spinal taps since a couple of weeks
before he left the hospital. When we see our pediatrician on Monday for
their 3 month appointment we'll see when she wants another head ultrasound
done.
OT/PT/Developmental Follow-Up Clinic
This week we went back to Mercy for the NICU
Developmental Follow-Up Clinic and they're doing great! With Anthony's
brain bleed, we've of course been concerned about his development but the nurse
practitioner said if she hadn't read his file she wouldn't have known that he
had the brain bleed! He's right on track developmentally. We still don't
know the extent to which the bleed affected his brain but she said the chances
of it being anything major are pretty small since he's doing so well!
PRAISE GOD!!! We honestly can't thank all of you, our prayer
warriors enough! Aryanna is right on track developmentally as well.
Our children are living, breathing proof of God's miracles! The
nurse practitioner also weighed them and measured their length and head
circumference. They aren't on the growth curve yet, but they're closer to
it than when they were born so they're doing a good job of catching up.
This didn't surprise us because they're such good eaters and gaining
weight like crazy! (Anthony was 8 lbs 11 oz and Aryanna was 6 lbs 15 oz).
We've also been having OT (Occupational Therapy) come to the apartment
once a week and last week we had PT (Physical Therapy) from the AEA come.
So grateful we have so many resources available to us! OT, PT and
the follow-up clinic all have them working on similar things right now:
tummy time, pull-ups from their backs on the floor while holding our
hands, and sitting with our assistance to work on their neck muscles, stretches
looking left since they both love to look right and are getting flat spots to
prove it, staying mid-line with their hands at their face when they're on
their backs to keep their shoulders rounded and pressure on the back of their
head and grasping toys.
Upcoming Appointments
Anthony will be going to the cardiologist in
September to check on his PDA, but the last time we were at the pediatrician
she said she couldn't even hear his murmur! Next week we're going to the
pediatrician for their 3 month appointment. Normally we wouldn't go back
until 4 months, but she wants to keep an eye on them since they're preemies and
we're grateful that's her attitude! One of the things she'll be checking
on is a condition Anthony has developed recently that's common with preemies
called hydrocele. I won't go into the details about his boy parts, but
you can read about it here. A lot of times it just resolves itself, but
it can turn into a hernia which would require surgery. Please pray that
it would resolve on its own-God has been so faithful in healing our little guy
so far and we're trusting that he will again!
So that's the update! I don't think we've had
a week yet where we haven't had some sort of doctor appointment on top of the
weekly visits from the visiting nurse and OT. But again, we're so
grateful that we have so many resources available to us to make sure our little
ones grow and develop. And we know that these appointments will be fewer as
they continue to make progress.
On another note, school started this week but I'm not going back until
October 4th. So glad I get 6 more weeks with my little munchkins!
