Noah's Journey

I thought for a little while how I should go about discussing Noah's journey. Lots of words are ok, but let me say that when I was pregnant with Noah, the only thing I wanted to see was photos. I wanted to see how other children looked at various stages of their growth and I simply couldn't find what I was looking for. So for Noah's Journey, I felt it was really fitting to put a photo timeline together. I believe that photos speak louder than words in this case.


We found out at the 20 week ultrasound that Noah would
be born with at least a unilateral cleft lip and maybe a cleft
palate.


Noah was born having challenges early on, so he spent a
week in the NICU. None of those challenges were cleft
related though.


Noah used the Haberman Special Needs Feeder from birth.
There are other bottles, but this worked for him.

A good look at Noah's unilateral incomplete cleft lip. His
was incomplete because there was a small amount of skin
that was connecting under his nostril.


Another view of his cleft lip.


They were very nice in the NICU to let Tommy play some
music for Noah.


From this view it can be seen how Noah's nose is a bit more
flat than typical because of the cleft.


Our cleft team moves quickly with the dentist. At 14 days
old Noah's mouth was molded for a retainer type of
mouthpiece called the NAM. The NAM was there to help
shape the lip, nose, gums and palate in preparation for
surgeries ahead. The taping we did was to naturally stretch
Noah's lips closer together so that at lip repair the surgery
would be easier. The difference after 3 months of taping
was amazing, his lips touched untaped by the end. In the
beginning they did not.


Noah wearing his NAM without the tape. The NAM also
created a palate for him so that eating was easier. He got
very used to having that NAM so feeding without it was a
challenge after awhile.


A good view of Noah's lip and palate before either repair.
There is a portion of his gum line that is missing because
of the cleft. His nose is not positioned properly either, being
pulled to one side. His palate was opened all the way
through to the nasal cavity.


A nice wide smile from my happy guy!! Take lots and lots of
photos of these gorgeous wide smiles because they are
gone so soon!


Before Lip repair and after taping Noah's lips for many weeks,
his lips easily touch as he sleeps.



Noah in pre-op for his lip repair. Notice how the wires from
the NAM go into his nose. They aren't placed correctly in
this photo because his lip is not taped, but it was those
wires that shaped his nostrils for three months. They were
adjusted biweekly.


Noah in pre-op with Tommy. It was certainly a difficult day.
Sending him to surgery was scary, however when you have
a team you trust it isn't as hard to pass your child to them.


We were honored to work with the Detroit Medical Center
and Children's Hospital of Michigan when they asked if they
could use Noah for the cleft lip and the cleft palate surgery
to put into DMC's medical video library. This is the first
photo we saw of Noah post op and certainly the most
impressionable. I recall standing there, my hand over my
mouth, lots of tears and asking if this was really Noah.
Yes, the difference was that incredible. I still get those
goose bumps today just thinking of it.


Noah resting in his room after he was moved from the post
op area. His face in general was rather swollen after all the
work that had been done. He has soft, plastic stints that are
in his nose. They are cone shaped, wider at the opening of
his nostril, to hold it open and keep the shape. These had
to be cleaned with saline and a special syringe to keep it
clear. This was a daunting task to do to your 4 month old
baby who had just had the cleft version of a nose job and a
major lip repair. But it is absolutely able to be done and it
very much improved his healing. He could eat well since he
was able to breathe through his nose. This may look a little
scary, but believe me it didn't take long for him to look more
like himself. I think I had his mouth cleaned up by evening.


This was taken by Noah's wonderful nurse when we first
were able to hold him. Notice the smiles...we were happy
to see him first and foremost. But we were in sheer awe at
the results that had taken place earlier that day. This was
a happy day indeed. A day where we celebrated that we
would get to enjoy another first smile from Noah!! One
thing us cleft parents are blessed with, we get to see two
first smiles!! The first wide smile, then the second smile
after repair. It took me at least a month to get used to
Noah's new smile. I was often saying, it isn't big enough!!
But over time I got used to his new look and fell in love with
that as well.


Here Noah is one week post op! The tape fell off his lip and
to our surprise his lip looked amazing in just that one week.
Until the first post op appt with the surgeon, we were told
to keep his bandages as they were. So of course, things do
get a little yucky!


Sleeping peacefully about 10 days post op. The swelling had
gone down quite a bit and he was virtually himself again.


Two weeks post op and Noah is looking quite good! At this
point all the swelling had gone down and now it was just
allowing the stitches to dissolve. Noah will continue to wear
his nose stints until 14 weeks post lip repair to preserve the
shape of the nostrils. Our team had told us that 14 weeks
is well past the memory stage of the cartilage, so we should
have little risk of Noah's nostrils collapsing to the previous
shape. In the beginning, stints were full time. Towards the
end it was half days.


Noah was 7 weeks post lip repair at this point. His scar is
still a little red. We had already started to use a scar gel on
it that was recommended by our cleft team.


Noah's First Christmas!! He has healed quite well and is now
using a new NAM that is without the wires to continue to
help close the palate while aiding him to eat.


Noah is 8 months old and 4 months post lip repair. His lip
and nose have healed very well. We are getting ready for
his palate repair, which was scheduled just days after this
photo at his baptism.


Noah, 8 months old...surgery #2. Palate repair. This one is
just as remarkable. He needed 138 stitches to close his
palate. He was very swollen and he did have a challenging
time to get back to eating again. I couldn't blame him, I
wouldn't want to eat again for a little while either! But he
felt better the following day and did start to do better
eating.


One day post palate repair. Still quite swollen in his face. He
was actually quite happy this day, even with the pain we
knew he was in. We were allowed home after a one night
stay.


Noah comfy 3 days post palate repair. He had to wear what
is referred to as "no no's" to keep him from putting anything
in his mouth that shouldn't be there. This was to let the
healing continue. He was on a soft food diet until his palate
had completely repaired. No more bottle, he used a sippy.
No more NAM, now that he had an intact palate. His stitches
took about 8 weeks to fully dissolve.


Noah had to sleep with his no no's on as well.


However even if he got out of the no no's, he still often
slept with his arms out as if they were still on.


Just one week post palate repair and Noah was as happy
as could be. Seemingly not bothered by the events from the
previous week.


Noah is now 10 months old. He has adopted the Nuby
sippy as his sippy of choice. We did modify the opening so
that it was a very slow drip and easier for him to get the
contents out.


A good close up shot at 10 months old. The funny thing is I
had to take this photo because he had slipped crawling then
hit his nose on the floor and had a nose bleed! His cleft team
wanted photos to see if there was action to be taken. There
is some swelling, but nothing major.


A hot summer day and Noah is 11 months!! His lip had made
some changes since lip repair. Suddenly he had a thickening
that wasn't there before. His surgeon said that even though
it was so far past lip repair, the healing was still taking place.


Noah's first birthday! His healing had been going fabulous!


A checkup with Dr. Rozzelle today about 5 months post
palate repair. He is doing great and given a green light to do
as he wants, eat what he wants without concern. His palate
has healed well.


Noah, nearly one year post lip repair and it's hard to see he
even had a cleft lip! He has healed well, the thickening in the
lip had started to be less as well. His nose had developed
some thickening on the cleft side nostril, but it isn't anything
that is problematic at this point.


A big change in this view of his nose compared to what it
was at birth!


Enjoying Halloween! We are clear of any surgeries for a good
while. Noah just gets to grow and enjoy being little. Mom
and dad get to just have a little guy without surgery planning.


Enjoying the winter snow! Noah is 18 months now and
all is going well. He is picking up a few words and there is
no sign that the sounds he makes is affected by the cleft.
Some children with a cleft do have struggles with air
escaping when they make certain sounds.


Sleepy boy. Noah is now 2! He had his visit with his cleft team
and they had advised that nothing was needed. His left
nostril, as seen here, is still not as open with the tissue there.
But it isn't a concern to the surgeon and doesn't bother him.


Summertime fun! As Noah continues to grow, his face does
change. But it appears his nose and lip are developing really
well with him. No appearance changes and in this photo, I
think to myself...what cleft? Where? Because honestly, you
do start to sort of forget about it a bit once that intense first
year or so are past.


Enjoying the outdoors, his very favorite place to be.


By now Noah is just over age 2. He has gotten all his bottom
teeth and most of his top teeth. He is missing a few,
especially in the cleft area. Cleft affected children do have
a mixed bag of challenges when it comes to teeth. Some
get teeth fairly straight and close to the correct position, as
in Noah's case. But other kids will have their teeth come in
on angles, or in places like through the palate. This is not
uncommon. It is just that all cleft affected children are SO
different that you sort of have to wait it out to see what
happens with your child.


Noah is nearly 2.5 now. All we do is just watch our little guy
grow!! He visits the dentist on the cleft team every 6 months.
We have needed to put him into speech therapy, so he is
working on that. Something that is very typical for cleft
affected kids. Most will need some speech therapy, but it
just depends on how much.


In this photo Noah's teeth are showing more. His teeth are
fairly typical. However his top front teeth are more spaced.
He is missing a tooth to the left of his front two teeth. But
it hasn't stopped him from developing a love of almonds,
walnuts and cashews! Something my dear husband had to
convince me was just fine. Noah could handle it, even with
some missing teeth...he figures it out.


Enjoying some winter outside time! Noah is just over 2.5 and
continues to do well. In the cold his scar on his lip is a little
more visible. He still has some thickening on his lip, but
still nothing that is an issue.


Noah went to his second cleft team appt and I was thrilled
to find out his surgeon doesn't want to do any lip or nose
revisions any time before his next known surgery. The bone
graph to rebuild his gum line. This comes as a huge relief.
He is getting closer to his third birthday, but we won't need
to consider any major surgery planning until he is closer to
age 7.

Noah turned 3! My how he has grown!

Noah has really grown into a sweet little boy. His surgeries
seem so long ago now. The taping has become nothing but
a memory, the challenges and worry of surgery are distant
today as we chase our very busy little boy!

With a busy boy, comes typical childhood injuries. It absolutely
feels like Noah's nose is constantly an injury magnet!! After
having those surgeries I just cringe when he hits his nose!
For Noah, it seems his nose is very sensitive. If he bumps it
hard enough, he will get a nose bleed. Often starting from
the left nostril, his cleft side. I'm not sure if this is common
to have such a sensitive nose from the cleft, but I do know
other cleft moms who have had similar stories about their kids.
However, I can't put him in a bubble. He plays and plays hard!!
Noah had just fallen directly on his nose a few days prior to
this photo. Still makes me cringe, but it clearly didn't slow
him down!

A great view of Noah's lip and nose at age 3.


Noah at age 3.5, a view of his profile.


At age 3.5, a view of Noah's nose and lip from the top.

Noah just around his 4th birthday. He had seen his cleft
team and they were very happy with how he is doing.

Noah dressed in his Halloween fireman costume! His lip
still has some thickness where the scar is, but it is not
anything that would need to be repaired. Noah wouldn't
be Noah to me without that little scar.

Noah still hasn't had the surgery to fix his gumline where
the cleft is. We are happy that he actually has every tooth
that he should have, even if they aren't in the places they
should be. One of his teeth is about one half inch/12.5mm
behind his other teeth. Thankfully it doesn't bother him.

Noah on his 5th Birthday!! He is growing up so fast!

Noah started kindergarten in the fall of 2014!! He has been
enjoying school so much! He has made many new friends.
Noah saw the cleft team at Children's Hospital of Michigan
this spring. He is almost 6 now and we are looking at
starting preperation for his gumline repair. No surgery
for a few years still, but we need to get a plan in place!

We had the unique opportunity to be featured by Hour
Detroit Magazine to discuss Noah's journey and also speak
of how much we love Dr. Rozzelle, Peggy and the entire
team at The Children's Hospital of Michigan. I snapped this
photo of Dr. Rozzelle and Noah while the real photographers
were taking pictures.

Noah is a big FIRST GRADER! I can hardly even believe it!
We had cleft team this past summer and Noah is doing so well.
Noah had an appointment with Dr. Stenger, the fabulous
dentist on the cleft team, in November 2015. At this point
he doesn't feel that Noah will have his bone graft until
Noah is at least 8 years old, likely closer to age 9.

Of course, this is Noah's journey. Not all cleft affected
children have the same course, same doctors or the same
ways at which the doctors want to manage the repair and
maintenance of the cleft. It varies widely between teams.
This is our journey based on the kindness, skill and support
of the entire cleft team at the Children's Hospital of Michigan.

Dr. Rozelle, Noah and Peggy