Being premature has a way of following a kid lifelong. They
are at increased risk for a number of things as they grow. So far we had done surprisingly
well with Olivia. She had her RSV vaccines and never really had even sniffles
through all of cold and flu season. We have had no respiratory issues or eye
issues since being discharged from the NICU. She has been growing appropriately
and took to breastfeeding like a champ. Since being discharged from the NICU
she was noted to have a big head, not big compared to full term babies her age
but big for her. Her head just seemed to be catching up quicker than the rest
of her. Apparently it is not unheard of in preemies for one thing to catch up
quicker than the other, ie weight quicker than length or HC, or length quicker
than weight. Hers was her head. It wasn’t abnormally large so we were just
waiting and watching. At her 9 mo WCC
her pediatrician thought her anterior fontanelle seemed a little full. They
asked me, I said it is no different than it always has been so we again went
with the wait and watch. At that time she was between 40-50%tile for head
circumference. Last Tuesday we took her in for an acute visit because she had
developed thrush which was no big deal but the pediatrician on that day
remeasured her head. In less than 3 weeks hear head had increased by 1.5 cm and
jumped to between the 50-75%tile. Her weight and height remained less than 3rd
percentile this entire time. She was concerned enough to speak with our primary pediatrician
and they decided it was probably time to scan her. The main concern being
hydrocephalus. Olivia did have a small bleed when she was born but it would be
unlikely for a bleed so tiny to obstruct so we were really unsure of what we
might be dealing with. Mind you less
than 10 months ago we lost our son to a highly aggressive brain tumor so you
can imagine where our minds went. Of course the doctor in me knew that Owen’s
tumor has no genetic link and really has no play what so ever into anyone in
our family having anything at all similar. However you lose one kid to a tumor
and you automatically assume the worst whenever you are faced with symptoms in
another child. I have to give our pediatrician props… she managed to schedule
an MRI under sedation in less than 24 hours. I think they chose to skip the CT
scan because they unfortunately were thinking the same way I was and certain tumors
are seen better on MRI. She had her MRI
on Thursday and tolerated the sedation perfectly. We had our read that evening and it showed
benign enlargement of the subarachnoid space. We are lucky that there is nothing
bad, no tumor, no significant hydrocephalus, no need to meet with a
neurosurgeon. Basically she has extra fluid around the brain, not in it. All
the research shows that they have big heads, most growth in the first year, but
they tend to level out by age 2 and then grow into their big heads. It does not
put her at any increased risk for learning development or delayed motor
development. It does however, put her at
a somewhat increased risk for subdural hemorrhages with minimal or no trauma so
it is something we will have to continue to monitor and be aware of but overall
it is one of the best outcomes we could have hoped for. Now if things can just
go smoothly for awhile.
On to the hearing issues. I had issues with the ENT we had
initially seen so we were referred to an outside pediatric ENT, Dr. Shapiro,
who is amazing and I would recommend to anyone in this area. He was agreeable that
yes, there was fluid and yes, it could be causing her hearing loss so first
step was to get rid of the fluid. She had tubes placed in June and did
very well. While speaking with him he basically had her next few months laid
out. Tubes, retest hearing, if she passes fantastic then we go on with life, if
she fails then we go to CHOP and discuss cochlear implants. He said if she has
no hearing what so ever and we get cochlear implants in by a year old she would
have normal hearing and speech. Tubes done, we went back for a recheck on Tuesday. She did not pass the simple screen then, but
he said that may be because of the tubes themselves. We know she has some
hearing as she now responds to her name and wakes up when her sisters are being
crazy. However we are unsure if she has full hearing in both ears. We go back
the end of August for a more detailed hearing test to check one last time. If
she has some hearing in both ears we will sit tight and reevaluate as needed
and see if things work themselves out or if we need to look into hearing aids
in the future. If one ear shows no hearing at this time we will be sent to CHOP
to be evaluated for a cochlear implant. So far I am feeling pretty optimistic
that we will not need to go down the cochlear implant route.
Thus far our little fighter is doing her thing and
doing it well. We will be rocking the big head look for awhile, but I think she can pull it off.
