So it's hard to
believe it's 2017 and over 8 months have passed since I wrote my last
post. It's a time for New Years
resolutions and one of mine is to be better about keeping my blog up to date
and not let life run away without capturing these moments. Not only is blogging helpful so that I can
better process my feelings but I also think it's important to showcase Benton's
journey as other parents of micro preemies might want to know what life looks
like 3 years post NICU. So with that
being said it's time to update the blog!!!
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| Aurelia + Benton = Twinsies!!! |
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| Love these little love bugs |
8 months is a
long time so I have much to update you on-- I will give you both the short and
sweet version and one with more of the twists and turns. The short and sweet of the past 8 months is
this- our little family of four is doing amazing - Benton got his gtube out in
June, he is speaking more every day, and he is off all of his heart meds and
now is only on asthma meds and a daily vitamin.
His progress is nothing short of a miracle. In addition, we went on our first family
airplane trip all the way to Hawaii for Christmas and it couldn't have gone
better. Aurelia is crawling, babbling
and feeding herself. God is indeed good.
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| Pure Happiness <3 |
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| First Time Playing Together |
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| Getting Ready for Bed with my Two Little Loves |
Now back to the
long version :)
Adjusting to
being a family of four definitely took awhile.
While Aurelia has seriously been an absolute angel sleeping well, not
colicky, and latching easily it is always a seismic shift to welcome another
member to your family unit. After the
first month when we were inundated with visitors it was time to settle into a
new routine. I was lucky enough to have
a 5 month maternity leave and I wanted to truly know what it was like to be a
stay at home mom of two and boy did I get that experience. I have to hand it to every stay at home mom
out there it is a tough job but also the most rewarding. I cherish those moments every day now that I
am back in the office. Over the summer
we took advantage of my maternity leave and took a road trip to Michigan
(Aurelia's first trip out of state), headed to the Eastern Shore and went to
the beach (both kids were not fans), enjoyed outdoor picnics and concerts, and
even went to Annapolis to eat crabs. All
of these adventures helped not only solidify our family unit but also provided
Benton the opportunity to truly explore his surroundings and go on adventures.
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| Our Trip to the Eastern Shore |
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| Fun times in Annapolis :) |
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Not a fan of their first outing to the Beach
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Starting in
April we officially took Benton out of winter isolation and threw him out into
the world. now that he was mobile and had been off oxygen for almost 6 months we felt it was time to let him
explore and get more socialized. We
began by taking him to the playground multiple times a week and enrolling him
in a little music class. Entering such
new environments definitely put Benton outside his comfort zone. Each trip to the playground would cause Benton to try and run away from the other kids and
escape after about 5-10 minutes; with similar behavior at music
class. During this same period, I was also lucky enough to get
him accepted into a Strong Start playgroup which has really helped him
socialize better over the past months. Despite his rocky start Benton has become much more socialized over the past 8 months especially since we hired a nanny (when I went back to work) who takes him out daily to storytime, playground playdates and many other activities with kids his age.
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| Our Handsome Boy |
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| Participating in the Strong Start Playgroup |
Since April he
has truly blossomed in every possible way.
His speech which was really just some small babbling or silence in the
early part of the year kicked into high gear around September and then in
November went into overdrive. Now it
seems like every day he is saying more and more words, identifying everything
in books and pictures, and has even started to ask questions and say random
phrases like "whatcha doing mama, "oh boy"', and "correct" (if
you pick out what he is asking for).
He also sings and knows all the words to dozens of nursery rhymes. When his speech picked up in November I truly
breathed a sigh of relief and honestly felt my shoulders unclench for the first
time in the over 3 years since his birth.
I know it may sound silly but until that moment I was never sure he
would have a "normal" or typical outcome in life. For so many years I felt like I was waiting
for the other shoe to drop...after your kid is born at 23 weeks and they tell
you to say goodbye to him and his oxygen levels are below 50% for hours upon
hours on end --- lets just say the odds for a typical childhood aren't
good. When Benton learned to crawl - I
breathed a sigh of relief, when Benton learned to walk - I cried tears of joy,
when Benton no longer needed a feeding tube-- I couldn't believe our
unbelievable blessings, but throughout this all Benton wasn't talking and I guess I
felt that might not change. Despite the encouragement by his therapists, speaking was
the last piece of the puzzle - the one thing that very much differentiated
Benton from any other his peers NICU or otherwise. Finally this Fall we saw real progress on
this front and every day I am so grateful to hear him talk. Every utterance is music to my ears, every
new word a wonderful surprise and when he strings words together I can't help
but cheer. God is indeed good.
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| Family trip to Put-In-Bay, OH |
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| Summer splash time |
The last time I
updated Benton was still on multiple medications each and every day with his
most important medicine being his pulmonary hypertension medication for his
heart (sildenafil aka viagra). This medication used to mean the difference of being hospitalized and on a ventilator to being
able to be off oxygen and at home -- very important if you couldn't tell :)
Since January we had started weaning the sildenafil and by May our cardiologist was
ready to pull the plug and fully wean off the meds. We honestly couldn't believe it. We were so ready to be off this med- it is
incredibly expensive and our insurance is a pain in the ass to get it covered but
we were always willing to jump through those hoops if it meant we had the medication
and Benton could be home with us. Well
as the cardiologist said Sayonara! As of
May he went off his sildenafil and as of august we went back for a checkup to
confirm his echocardiogram and EKG looked good despite the lack of
medication. All the tests showed that everything looked amazing and according to the doctors we don't even have to go back for one whole
year!!!!! With that medication weaned
Benton now only takes his asthma medication for his chronic lung disease and a
regular multivitamin. Our little boy is
truly amazing!!!
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| Spring Picnics |
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| Aurelia Doing Tummy Time and First Time Sitting Up! |
I'm almost
forgetting one of the biggest updates of 2016....Benton got his feeding tube
removed!!!!! Yes, you read that right he is
tube free! In one of my last updates I
said he was no longer getting calories in his tube and by March/April they said
we could even stop giving him water via the tube as he had learned to
successfully drink from a straw and sippy cup.
Once we were no longer using the tube for calories or water it was just
a matter of time before we could be tube free :) According to our GI we could
pull the tube once we hadn't used the tube for 3 months and kept his weight
up. Well as of Late June we did a weight
check and were given final permission to pull his gtube!!! Now I know I should have been jumping for joy
that day but honestly I was so incredibly nervous and excited - basically just
a ball of nervous/excited/anxious energy.
While I couldn't wait for us to be tube free in theory the reality
scared me. What if Benton started losing
weight and we couldn't supplement and he ended up needing another feeding tube or another surgery? What
if Benton got sick and we couldn't help keep him hydrated? But at the end of
the day Joe and I knew he was ready to take this big step. What's funny is that while removing his gtube
sound like a big scary ordeal in reality it took less than a minute. We laid Benton down on his bed and simply
deflated the gtube's balloon, removed the tube from his stomach and put a band
aid on top. By the next morning it was
fully closed and had all but healed. Now
his stomach looks like he has an extra belly button or a dimple where the gtube
button used to be but that is all that remains of such a major aspect of my
son's early life. It truly is unreal how
something that affected every aspect of your daily existence can all of a
sudden disappear. Benton's feeding tube
had meant that we had to bring feeding tube supplies (feeding pump, extra bags, formula,
extra buttons, and syringes) wherever we'd go and often we would need to find
secluded places in public to give him his tube feeds. Now being tube-free we can just pack
up his lunch just like you would for any other child-- what a weight that has been lifted!
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| The day the Gtube came out!! |
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| Smiling since he is Gtube free :) |
Other major
developments: Since Benton was turning three we had to be
reevaluated for therapy services by the D.C. Public School system which would
also use the evaluation to create an IEP (individual education plan) for Benton
once he started preschool. During the
evaluation Benton was a little wild. He
had been going through a stage (at least we hope it's a stage!!) where he liked
to try and escape from rooms/park/music class/etc and also wasn't listening to directions very
well. This compounded with his delayed
speech and his refusal to show off his fine motor skills meant that while we easily met the criteria to continue therapy services it
also led the evaluators to recommend placement for Benton into a special
education only classroom rather than an inclusion or general education
classroom. This did not make us happy in
the least bit. One of the main reasons
being that Benton's therapists believe he needs to be around high performing
peers to model good behavior and show off their speech and language skills so
he can continue to make great strides. Another
reason being that the special education only classroom near our home is in
a school that is not well respected on the Hill. Not that it's a bad school but it's test
scores are definitely lacking...it's an option but definitely wouldn't be my top
choice. After the evaluation we made the
decision to keep Benton home working with his current speech, occupational,
feeding and physical therapists for another year and potentially start pre-k in
the Fall of 2017 when his cohort would normally start school. We felt that if Benton was a typically
developing kid he wouldn't start school until Fall 2017 anyway so why rush him
especially since he was born premature.
As we approach this coming school year we will tour the schools and see
what is a good fit and also see if he has made enough progress by the Fall to
get placed in a general education or inclusion classroom.
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| Corn Maze at the Pumpkin Patch |
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| Fun Times with Family |
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| Pumpkin Festival at Butler's Orchard |
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| Benton's Third Birthday! |
Our two week
holiday in Hawaii for Christmas was one of the best of our lives. Benton and Aurelia got to try out swimming in
Tutu and Grandpappy's pool, we went on daily adventures and checked out the
beach, saw friends and family and ate tons of yummy food. Aurelia and Benton got to really know their
cousin Sunny and Sunny and Aurelia got along famously. I can't wait to watch them all grow up
together!
