AJ’s NICU survival story

Hello! My name is Jennifer.  Your website is incredible, I
don’t know how I never came across it before.  I have spent many hours
on the web looking for research and things to try with our baby.  Our
first baby, diagnosed with reflux in September of 2002 still continues
to have some issues but is much improved. Our story is such a long
story, but I feel it’s important to share what our miracle baby AJ has
gone through so that other parents may learn from our experience.  I
worry that someone somewhere is going through the same agony.I just hope
this helps.  I am happy to hear your little one has improved as the
walking started, I can’t wait- it’s such a natual fix:)

Our peanut,AJ,  was born in June, 12 weeks early, so a surprise from the
start.  He spent four and a half months in NICU, and was intubated for
over eight weeks.  The first time he was sent from the nursery (oh happy
day) we had to give him CPR on the freeway on our way home-as I sat with
him in the backseat I saw him turn blue and go limp before my eyes.  We
called 911 and he was rushed back to the hospital.  He never had any
problems with eating or spitting up in the hospital, but after a ph
probe, they diagnosed severe reflux.  Meds were started (Zantac and
Reglan), in addition to thickening his formula and following positioning
precautions. He was monitored for an additional month- now it was time
to go home again.  He would be on a monitor which monitored his oxygen
and heart rate at home.   He never slept much, sometime ten minutes at a
time- but the ped dr. said it was just colic, and  he was at that age.
I couldn’t believe how our lives would change when he came home. He
would just wake up out of a sound sleep crying.  We switched formula to
Enfamil Lipil, and used Dr. Brown’s bottles, which I have so much faith
in.  Things seemed to drastically improve with his fussiness and
gassiness.  We had an uneventful few months – since he never spit up and
was nearly 8 months old (they usually grow out of it)  the meds were
stopped. But then at the end of Jan, I found him in his crib turning
blue- no choking, not after feeding, no regurgitated food, but within
seconds he stopped breathing and I had to breathe for him and call 911.
It happened so fast. He was hospitalized again and monitored for a week,
and sent home again with reflux meds started again.  During February we
had multiple visits to ER for turning blue, drops in oxygen, and what
seemed like an upper repiratory infection, or so they thought.  He was
always wheezing and sounded like he was panting (we were told this was
from another condition he has called chronic lung disease from being on
the ventilator so long), so we thought that is just how he would
breathe.  We grew accustomed to it.  We were consistently sent home
sometimes with asthma meds, sometimes on antibiotics, always left with
the question of why he still had so many problems. We were giving him
lots of breathing treatments at home, but nothing was working.  He was
starting to not eat well, and just seemed sick. Then after one more call
to 911, he had a lengthy hospitalization, and we found out he required
two surgeries.  They had found excess tissue in his airway that had to
be removed and he had a Nissen Fundoplication, where they wrap part of
the stomach around the esophagus to prevent food/acids from backing up.
He had so many what they call ALTE’s (apparent life threatening events)
that there was no choice but to do the surgery.  The upper GI showed
very severe reflux, even though he had had no food for two days- we
didn’t even know that was possible.  He had been getting much worse and
had stopped breathing so long he had to get his breathing tube back and
be put back on the ventilator.  It was so sad, and we felt so out of
control.  How come so many people had misdiagnosed him, esp. with a
history of reflux.  It seemed he had very atypical symtoms, never
displaying regurgitation, or pain associated with  eating- that was his
favorite thing!  He was quite fiesty and didn’t sleep for long, but we
attributed that to a lengthy NICU stay. In our case, we didn’t expect a
typical newborn, but we didn’t know how much was wrong. It was missed
repeatedly, and even from what I read, did not seem like reflux.  We
don’t blame anyone, but at times it felt like they didn’t believe us
until they saw him turn blue so quickly at the hospital.  We have been
home for over a month (the last surgery was march 3), and things have
been mostly good, but this last week- he’s been having some choking
episodes, where I have seen formula back up in his throat. With the
surgery, this shouldn’t happen- most infants are not able to burp or
vomit, they just retch.  He also did a big burp last night.  We have
spoken to the surgeon and are looking into having the upper GI repeated
to see what is going on in there.  Hopefully, our story ends here, and
these epidsodes are all there will be.  We can only hope.  Overall, he
is such a happy guy for what he’s been through.  We are astounded at the
little boy he has turned into….and we hope this story may help someone
with a baby who is suffering.  Thank you so much for this opportunity to
share our story.  Feel free to e-mail me with questions, or if parents
would like any info- the best of luck to you and your new baby.

Mom of AJ (first, and hopefully only baby born with reflux:)