the medical mindset- you are your child's best advocate

you may even be your child's ONLY advocate.
i will start this post by saying that i received great care at emory.
the staff was very helpful- always mindful of my needs, often before i
voiced them. for that i am grateful.
the basic humanitarian needs of jedi? we kind of had to fight for
those. i will list as much as i can recall- all this for parents who
may face the similar challenges.
jedi didn't wear a diaper for his first twelve hours of life. not
that I minded. it afforded me more skin to skin contact, and i wasn't
the one doing the laundry. i found out later that this happened
because he wasn't even in the computers. that makes sense looking
back. i don't recall them checking his temperature, how many wet
diapers he had, or how often he fed.
at some point during the first night we began to realize what we were
up against. we called the neonatal nurse practitioner and asked for a
cardiac consult. we wanted a current echo of jedi's heart. the
moment she came into our room i noticed jedi wasn't breathing. she
asked chris to give her the oxygen- which she promptly shelved. she
did not attempt to help us. i was confused and told chris to give
jedi to me. i massaged his chest, flicked his feet, rubbed his head,
and talked to him. he began breathing.
before i kindly asked her to leave she said, "you are just going to
have to keep doing that. sometimes it's better if you just let them
go."
and that- that my friends- is what is cozily called "comfort care".
as soon as she left i told chris to hand me the oxygen. soon after
she came, the neonatologist came in. she wanted to get some things
straight. our request for a cardiac consult confused her. while we
came into the birth without any real solid plans regarding the care of
our son- it seems that it was predecided that we would withhold all
medical aid from him. yes, we were offered that option- highly
suggested that option. but chris and i- talked it through and decided
that we couldn't withhold medical treatment based on a prenatal
sonogram. we wanted current clearer pictures- so we could make an
informed choice.
while she was in the room chris decided to ask her why jedi was having
apnea episodes.
"because he has a chromosomal condition. his chromosomes are not
correct in the cells of his body". the neonatologist was telling us
how these trisomy babies just don't do well and there is no use to
poke around trying to find out how to help them. i told her that
maybe they don't do well because a majority of the doctors and nurses
exposed to them withhold care. that maybe they'd do a little better
if they were given a little bit of help.
later, when the nicu charge nurse came to visit we asked her the same
question about the apnea.
"i don't know, but i'll find out."
"good answer", chris said- relieved that someone was taking us
seriously.
we finally got the cardiac consult when the cardiologist came in that
morning.
chris' main comment was "why does it have to be all or nothing? just
because we aren't going for heart surgery, why does that mean we
should sit on our hands and not do anything for him?"
my main complaint was "why can't 'comfort care' be a cafeteria type
thing? why can't we put an asterisk next to it and define it
ourselves? why don't they ask us what we want comfort care to mean?"
ultimately we wanted comfort care to be this for jedi-
clean diapers
oxygen if he needed it
food- and the ability to get it in his body.
last but not least, love
the feeding tube came about the time we notice the tide turning. some
staff started to realize what we wanted. some remained in their
autopilot "comfort care" mode.
the nurse who came in to set the feeding tube just stood there
watching him have an apnea episode in his bassinette. she requested
him to be in the bassinette for the feeding tube placement. i asked
her "is he breathing?"
she said matter-of-factly, "no".
"babe, just get him!" chris said.
i pulled the bassinette closer to my bed and took him out- rubbed,
flicked, talked- and he began to breathe again.
another nurse came in later. i honestly can't remember what she was
talking about because after she called jedi "it" three times, i just
stopped listening and stared out the window. thankfully chris kept
listening.
once the tube was set- they put him on a feeding schedule that we
didn't know would surely starve him to death. his diapers began
showing uric crystals that the nurses called "brick dust" because
that's what it looks like in the diaper- rust colored dust. my friend
michelle was trying to score some donor breastmilk and texted me
asking how much jedi needed. i told her what he was taking and she
exclaimed how inadequate that was. we requested a bump up in his
feed. they didn't suggest it- we did. it just felt so strange. in a
normal baby they would have been all over any opportunity to up his
feeding. but since jedi was slated to die, why keep his tummy filled?
at the hospital chris was a strong and steady advocate for jedi. he
calmly and matter-of-factly would tell them just what we wanted them
to do. i have never cared more for him than i did during the times he
stood strong for his helpless son. such love- such passion. i felt
so proud to call him my husband.
and taking jedi home- felt so good to leave and be able to surround
him completely with love and deep and true comfort care*.