Hard, hard, hard! This was so very hard but our daughter is a
superstar.
I have had my fears about Necrotizing Enterocolitis (NEC) all week,
since they started adding a 'fortifier' to my breastmilk. I know what
I produce for her is specially made for her. Most hospitals feel that
these preemies need more of a boost to nutrients and calories to help
them grow and deal with the outside world. My hesitancy was real but
then what really sealed the deal was the ingredients: cows milk, soy,
and corn sugar. I knew that this little premature gut did not need to
deal with substances that many more mature guts have issues with; plus
you just look it up on the web and there are so many warnings about
preemie fortifier and NEC. I did not put my foot down as (1) she was
doing so well and (2) it is hard to refute the findings and say 'no'
in such an alien environment. Hear some guilt in my voice?!
That aside because we don't know for sure what started Zaria on a
downward spiral Friday afternoon. She was great; in fact I had gone
out to call Luke and Mom to fill them in on how well all her 'numbers'
were for the day. Upon returning to a scene that was not normal for
the afternoon (many nurses and also the xray tech and his machine) the
nurse informed me that she discovered a diaper full of blood. Ok well
that is just freaking scary and enough to close up your throat and
drop your heart quickly.
Still xrays didn't show anything 'big', maybe a suspect place in her
gut but still all her 'numbers' were great. So maybe it was just some
lining sluffing off and antibiotics and no food were prescribed.
Next we were requested to meet with the night doctor and found out her
health was quickly deteriorating. He gave us the 'picture'(literally)
of what was happening and could happen and the larger doom and gloom
speech that we have heard several times before in the NICU. I
returned home to put kids to bed and Luke stayed with her until after
midnight. At 3:30am I got a call saying there was indeed a
perforation and surgery would happen in the next few hours. Another
call around 4 called us into the hospital quickly for a 4:45 surgery
time. Thankfully we have this awesome family support and Luke's bro/
sil met us at the hospital to help support the kids.
She still 'looked' like a picture of preemie health as we talked to
the surgeon and waited for what would happen next.
The RT (respiratory therapist) gave us the heads up that she was being
returned to the NICU and the kids were able to finally see their baby
sister as she rolled by them. They were so happy and Demetrius says
with a grin "she is so tiny".
During the procedure a good portion of the gut was found to be
necrotic (dying/dead). A large portion of the small intestines, the
right side of her large intestines and the appendix were removed. The
two ends are then adhered to the wall of the belly. The hope is (what
happens in many babies) is the intestines regrow a good portion and
they are reattached once she weighs about 2 kilos. No feedings for
quite awhile instead she will grow on IV 'nourishment'. We may not be
out of danger of more necrosis although it is more rare for this to
happen.
The next several hours we cryed and prayed and worried through the
dire recovery process. Her potassium levels were super high and the
kidneys took awhile to recover from the drop in blood pressure and
other reasons. Finally as we both sat and 'held' her kidneys in our
hearts and hands (energetically) she begin to pee and rid herself of
the deathly overdose of potassium. My good friend and healer Shannon
called at just the right time to help me recover my spirits and gave
me tools to help myself and Zaria tap into all the healing energy of
the earth and the love around us. This was so helpful to just sit by
her bedside and close my eyes to all the machines and bustle around
me. I just spoke to my daughter, soothed her and helped her relax.
Luke held her hand through the more intense blood draws. When I
looked at this team of women who were working together to help my
daughter (a wonderful nurse, rt, doctor, support nurses, pharmacist) I
was so encouraged; yes it wasn't what I would prefer: a team of
midwives and other women aiding us in our home BUT it filled my hearth
with thanks. These women worked tiressly and with positivity, empathy
and love for our daughter and us.
FINALLY the liquid gold started flowing and Zaria began to move the
potassium out and we all watched the level drop. Amazingly her oxygen
needs were great the whole recovery process and other numbers were
looking good. We finally left the hospital during shift change at 6pm
Saturday evening to meet up with the kids and recover from this
experience. Luke returned after a visit during the wee morning hours
with many tidbits of good news and our little girl is currently
resting and recovering well.
A side story: our day nurse worked hard and I mean hard for her
entire 12 hour shift to serve our daughter. Come to find out Marilyn
was on vacation in Reno 30 years ago from the Bay area. She was
pregnant but had gotten the ok to travel. She went into premature
labor with her daughter and they spent three months in NICU. This
experience is what actually inspired her current occupation.
Talk about having a caring, giving healthcare provider with a huge
dose of empathy to boot. Looking forward to seeing her again today
but we plan for her to be 'bored' during work hours.
Thanks for all the support. It helps our family and especially our
little girl so much!