If you haven't heard already, we
are HOME!!!!
Hayden was discharged from CHOP
this past Monday! It was quite a ride home. Hayden passed his 2-hour car seat
test at CHOP but unfortunately we were in the car for over 3.5 hours. Not my
idea of a homecoming ride home! We hit major traffic and had to administer
Hayden's first feed out of the hospital on the side of the NJ turnpike! Good
news is we did it- and we are now pro's at tube feeding on the go! We were
welcomed to a decorated home and my spirits were lifted when I saw the outpour
of love for Hayden and for us....
Since we have been home, Hayden
has developed quite a bad case of reflux. He is on meds for it now but it
hasn't stopped him from vomiting. As long as he continues to gain weight, they
say he is fine but any parent knows watching your child projectile vomit
several times a day is anything but fine. Hayden's insides are all still trying
to get familiar with one another since his surgery. Heart babies often struggle
with reflux because of the change in their organs. But even though this is
common, it is still so hard to watch.
Otherwise, Hayden is doing pretty well! We are all
adjusting to our new life and Rob and I are
becoming great at our nursing
duties. My days are full of feeding tubes, administering medications, phone
calls to teams monitoring him at CHOP, facetime visits with nurses, home care
nurse visits, pediatrician and cardiologist appointments, scales and pulse-ox
monitors, as well as changing diapers, snuggles on the couch, listening to
lullabies, and all the other normal baby things- and I wouldn't trade any part
of it. Hayden is a true miracle and blessing to our family and we are so amazed
at his strength!
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