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Around 1 week old,
Isaac started projectile vomiting, where he would lose his entire
bottle. Immediately, his pediatrician thought that he was aspirating,
so we began thickening his formula (we have tried every thickener
possible from Simply Thick, Thick It, GelMix, our own thickener made
from Bob's Red Mill Xanthan Gum, Rice Cereal, Oatmeal-what works is a
mixture of oatmeal and rice cereal). From his irritability, she assumed
that he had reflux as well. The thickening seemed to help some. At
least when he would vomit, it would not hit the wall, instead, it was
thick and just rolled out of his mouth and onto the floor.
I am
a new mother (fairly young, 26), but I was still concerned with his
labored breathing that we noticed at a very young age. When I would
tell my pediatrician this, she figured that it was the reflux settling
in his nasal cavities. I decided to record his breathing one night and
promptly took it to our pediatrician. When she heard his breathing, I
will never forget what she said to me. She said, "Megan, he stops
breathing" as it were breaking news. I was thinking to myself, I told
you so. Now, our pediatrician is excellent and has been proactive with
our little man. I think she probably thought that I was an
over-anxious, new mom...which I am (now). We immediately saw an ENT.
He did the laryngoscopy and I was introduced to the term Laryngomalacia,
which was a new one for me. Our ENT said that it is something fairly
common and that most children grow out of it and proceeded to tell me
about the symptoms that are typical and the ones that are not so
typical As the weeks passed, we started to notice the more not so
typical symptoms: apnea spells, rapid belly breathing, chest and neck
retractions, extreme difficulty with eating, projectile vomiting.
We also went and had a modified barium swallow study completed. It did
confirm that he aspirates, actually pretty badly. We have to thicken
his formula to a honey/ pudding texture, which means lots of oatmeal and
extra calories. So, when doctors would evaluate him, he was thriving
as far as weight gain. I continued to share my concern with his
breathing and apnea spells and refusal to eat with our ENT, but he
wasn't as concerned due to his weight gain. While meeting with our
pediatrician, he had a spell where he couldn't catch his breath and then
vomited a lot of mucus. At that point, she told me that surgery was
necessary. This meant a lot coming from a doctor that takes the
holistic approach when possible.
Before his surgery, they wanted
to confirm that he did not have pyloric stenosis or malrotation. We had
a full upper GI completed. They were able to eliminate the two
problems that would require immediate surgery, but they did confirm that
he has extreme reflux (if the spare change of clothes in our diaper bag
didn't give it away first). They also found that his stomach does not
empty correctly (Delayed Gastric Emptying), which may require surgery.
We are monitoring this for now.
Finding out all of this has
been tough to swallow (no pun intended), because everything just seemed
to build upon one another. He also has torticollis, which we have been
going to physical therapy once a week in the beginning and now one every
two weeks.
So, Isaac went into surgery on November 15, 2012.
This was a scary thing for me, due to the fact that he was completely
sedated and required a breathing tube. I had read about this and knew
what to expect, but it was still a little scary for me. The surgery
went well. They clipped the extra/ floppy tissue, but they also had to
repair his epiglottis while in there. The doctor also found that his
bronchial opening is smaller than normal, which may require stretching.
I feel like we get a lot of "this may happen" or "this will probably
happen in the future" in regards to some of his other complications. As
I said, surgery went well. Spending the two days in the hospital with
an IV and a baby that refuses to eat was not so great. He required
quite a bit of morphine for pain. He wasn't recovering as quickly as
expected, so he was given a strong dose of antibiotics and two doses of
steroids to help with inflammation. We were discharged from the
hospital, home for three hours, and then back in the ER. Isaac got
choked, couldn't catch his breath and required somewhat of a Heimlich
maneuver to clear his airway.
After that little episode, the
breathing seems to be much better. They just believed that he hadn't
cleared all the "junk" out from surgery. He is able to sleep on his own
(in his Nap Nanny). Previously, I or my husband would have to hold him
upright most nights due to the choking and apnea spells. Although it
meant little sleep, it was comforting to us due to the fact that his
breathing was so labored. We did have some nights where he was able to
sleep in his Nap Nanny on his own. We got to the point where we could
say to one another..."tonight is going to be one of those nights". One
reason why I say that I wished I had found out about the CWL sooner
(other than the tremendous support) is the fact that it was by trial and
error that we found that a Nap Nanny would help. We realized that he
did much better in his car seat, but we weren't comfortable with him
sleeping in it.
So where we are now, is dealing with his eating
aversion and taking amoxicillin for an ear infection, which I have found
on the CWL site is common for LM babies. Isaac should be consuming
around 30 ounces of formula per day, but we are lucky if we can get him
to drink 16-20 ounces. This is a hydration and nutrition concern. We
went back for another swallow study today. He continues to aspirate
basically the same. Not that it was a fun experience, but fortunately
they were able to see his refusal to eat. We have tried every bottle
possible with a nipple that allows thicker flow, sippy cups, cup
feeding, and spoon feeding. For a successful feed, we have to feed him
right when he wakes up from sleeping or a nap or when he is falling
asleep. This means little time going out and having to master plan the
day. We have tried all types and brands of formula as well. We are
currently using Enfamil Gentlease or Gerber Gentle. We were referred to
see a nutritionist, so we will add that to his list of specialists and
our list of bills. Financially, this has been difficult due to the fact
of the multiple specialist copays, surgeries, studies, pediatrician
appointments, etc. I am a school teacher and have not been able to go
back to work due to all of his struggles, but his health is a priority
right now.
Written by LM Supermama: Megan
