JAHIRA CDH JOURNEY | Congenital Diaphragmatic Hernia | Part 4

once released from the NICU
we had a 48-hour well check appointment scheduled with our local pediatrician
before leaving the hospital Jahira had many appointments scheduled including
heart GI pulmonology cardiac development and her surgeon. within the month of
returning home Jahira’s reflux became more severe the amount of reflux she was
having began to cause concerns that she was not getting enough nutrients she
also developed a skin irritation we had to constantly watch her and keep
her swaddled to avoid her gouging out chunks of her skin and causing herself
to bleed. the pediatrician wanted to try formula but I was determined to give her
breast milk this I eliminated allergens from my diet
once I started slowly adding allergens back into my diet we realized that she
reacted mostly to Dairy. her skin was so irritated she would
scratch her hair out her skin was dry she would scratch her face anywhere
she’d get her hands she would scratch July, we met with immunology to help
with her skin irritation and scratching and her dairy allergy after further
examination we determined that the rate of her feeds was also contributing to
her reflux when she came home she was on bolus feeds. the fact that her milk
was going in so fast caused her to get over full too quickly and then the milk would come back out. many CDHers have whats called, jurors mal / non
rotation and sometimes that leads to slow motility or a slower emptying of
the stomach. Jahira’s stomach was closer to the size of a newborn versus a
three-month-old because of what she had already been through in life. she was
moved to a feeding machine that administers the same volume but at a
slower pace another issue we were dealing with was severe oral aversion
Jahira wanted nothing near her mouth simply touching her lips could produce a
gagging reaction we began to desensitize her by consistently kissing her cheeks,
neck, nose, eyes. two months home and Jahira’s reflux
was slowly improving she allowed those she knew to approach her or she was
immediately suspicious of unfamiliar situations and new people in August with doctor approval we begin
weaning off continuous oxygen and August we completed a swallow study
and received confirmation that Jahira was not aspirating fluid to her lungs
she was doing so great but unfortunately our GI appointments weren’t going as
well as everything else. Her GI wanted to place a g-tube to allow Jahira to receive feeds directly through her stomach but we were hesitant to approve another procedure and hospital stay we were determined to try to get
her to feed orally we tried so many different tools to get her to eat we
tried having her eat in different locations aromatherapy, different chairs, different
feeding cups, spoons, bottles, even medicine droppers. At her development appointment at nine
months Jahira tested as being two to three months behind her age group due to
her being in the hospital three months and being born three weeks early they
weren’t necessarily too concerned about her being behind her age group but her
MRI results were comforting and we continued pray that she does not have neurological damage. Jahira was given a series of RSV shots
to keep her from contracting it since she was born with one lung and it was
compressed by her heart she is susceptible to any upper respiratory
issues in November our physical therapist began
using K tape to help support Jahira’s muscles and by December 18th she was
crawling we covered the floor with gym mats
because while trying to crawl and walk Jahira’s left side would give out and
she didn’t know how to catch herself so she would fall face-first. Again thank
you so much for watching. Her mission in life is not to merely survive but to

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