Callie started receiving night nursing care when she returned home from the hospital a little
over two years ago with a NG feeding tube. At first it was essential...
She had long night feeds through her tube and had to be watched throughout the night
for safety. If the tube came partially out while she was sleeping,
formula could be pumped into her lungs and this was obviously very dangerous.
After 5 months, she was switched from a NG to G tube. The G tube
was so much better, but she is a very active sleeper and often became tangled
in the cord, sometimes around her neck. By
this time Callie's nurses were already like family, so we were glad they could stay and
continue to keep her safe at night.
The nurses became very
attached to Callie and she loved them in return. Miss Yolander joined us
at the beginning of our feeding tube journey and over the course of two years
watched Callie grow from 16 to 32 pounds. She became very protective of
Callie, often referring to her has her baby. She was in
charge of training any new nurses/subs for Callie's case and would give
strict instructions for taking care of Callie, almost to the point of
intimidating the new nurses I was told. All of the staff at the agency knew about
Yolander's baby. :) Miss Yolander also kept Callie stylish with
super cute hairdos in the mornings. Her teachers and therapists
would comment on her cute updo's and I would have to confess that it was all Yolander.
Miss Zeinab was with us
on the weekends for nearly the whole two years. She taught Callie her
dance moves and spoiled Callie by letting her use her phone to play games and
watch cartoons. They were also known to party into the night on weekends.
We often heard giggles and laughter way later than we should have. :)
Miss Christina was the
newest addition to the team, but it quickly felt like she was there the whole
time. As a mother of four, she had a special touch with Callie and they
were soon close. They would read books together past bedtime and just
seemed truly happy together. This spring Miss Christina gave Callie a
cute haircut and taught me how to do the same, although I have not been brave
enough yet to give it a try.
We were so fortunate to
have such a great, caring nursing team. At one point they picked up on her apnea
symptoms and suggested having her checked out, which led to sleep studies and
an apnea diagnosis, which lead to a tonsillectomy and adenoidectomy. They
also monitored Callie for seizures, although none happened on their watch.
Overall it was a huge blessing to have them be a part of Callie's team.
It was bittersweet when
we learned this part of Callie's care was ending. At our last GI
appointment, the doctor was thrilled with Callie's growth. She is now
firmly on the growth chart, holding steady at about 35% (up from 0%!). Her
most recent growth is definitely due to the introduction of a blendarized diet
(which I wrote about here). We had been slowly adding more calories during
the day and cutting back on formula at night, and when I went over everything
with the GI, he instructed me to move forward and cut the remaining night feed.
This was amazing news... After more than two years, Callie would no
longer need to be fed by a tube at night. No more hauling a pump, bags, formula
and miscellaneous supplies while traveling. No more accidental bed feedings at home or on vacation (Hilton Parc Soleil… still so
sorry about that!). But sadly this also
meant we had to say goodbye to Callie’s nurses.
We miss you Yolander,
Zeinab, and Christina. Thank you for
everything you did to care for Callie over the last two+ years. We are very grateful for your service to our
family and wish you the best. <3
