I wanted to do some blog features to highlight some great people I have recently 'met' with special needs kiddos/family members. There stories have helped me and I wanted to share there journeys. For me as a special needs mom I crave that connection with other special needs parents. I get that through emails since I don't have any real life friends with such kiddos. One thing I have learned though is even though I(we) have special kiddos we are all moms and our stories may be different and our families may look different, but in the end we all hurt for our kids, we all get sad and angry, and we all experience the joy in our kids. At the heart of it we are all the same with different paths.
My first feature is Nicole and her son Avery. I 'met' Nicole when she emailed me to share a little bit of her story, which is oddly similar to ours. Her little man is amazing and like B is a little miracle. They both even had G tubes placed within a week of each other (both there 6th surgery). But unlike B, Avery was born a twin and has a sister to join his journey! Here is Nicole and her son Avery's story.
Avery Castle
Born at 25 weeks and 6 days
2lb 4oz
Now 2 years old.
1.Tell me a little bit about your sons journey.
It
was hard for Keith and I to get pregnant. We did several different
kinds of fertility treatments which didn’t work out. After a miscarriage
and a failed round of IVF we found out we got pregnant with twins via
IVF on 11/1/09. We were ecstatic that we were pregnant and twins made it
even sweeter. But our pregnancy was FAR from “normal”. At 6 weeks
pregnant, I woke up with the most awful pain. I thought it was a kidney
stone as I had bouts with those before and it was a similar pain, but
even worse this time. We went to the ER to find that it wasn’t a kidney
stone, but that my right ovary, through a complication from the IVF, had
become engorged and twisted causing the blood supply to it to cease and
it died. So, I had to have surgery to have it removed. I was so scared
because I knew that surgery at 6 weeks pregnant was a risk. Thankfully
everything went well with the surgery and the babies made it through.
Everything was on a fairly normal course after that. Because we were
pregnant with twins we had to have level 2 ultrasounds every month to
monitor their growth. At our level 2 ultrasound in march (22 weeks and 2
days pregnant) we found out that my cervix had opened. They sent me to
Duke University Medical Center and I was placed on 100% hospital bed
rest. I was able to keep them inside for about 3 weeks longer, but due
to them continually trying to come we delivered them at 25 weeks and 6
days.
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| Avery on CPAP |
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| Avery and Raegan |
Avery
had a very rough first few months of life. On day 3 of life, he coded
due to a Grade 4 bilateral brain hemorrhage. The Doctors didn’t think he
would make it through the afternoon and asked us to sign a DNR because
they had already had to do CPR on him once and felt that having to do it
again would cause more suffering than it would do good. Keith and I
weren’t ready for that and we told them we’d consider it but that it
wasn’t something that we wanted to do right then. We called all our
family in just in case so that they could see Avery in the event that he
did pass. Gradually he got better with every day. A week later we were
faced with more bad news. They knew he had some kind of infection, but
couldn’t identify it. They brought in infectious disease who tried to
grow a culture but couldn’t because they had already begun antibiotics
and because he was so small the sample they were taking from him just
wasn’t producing anything useful. They called it “presumed meningitis”.
Once again they asked us to consider the DNR. He fought that infection
for about a week and again gradually got better. In May of 2010 when he
was about a month old they decided that they needed to place a reservoir
in his head. The amount of fluid that was collecting on his brain was
increasing and they were unable to pull off what they needed to by doing
spinal taps. So, we sent our one month old into brain surgery. I can’t
put into words what it’s like to send your 3 pound baby off with
strangers to have something placed in his brain. To say it was awful is
putting it mildly. We got back on track after that surgery with learning
to breathe and grow.
Then we were faced with ROP(retinopathy of prematurity) because of the amount
of oxygen he had been on. We watched it over the course of a couple of
weeks and it just kept getting worse. The Ophthalmologist(eye dr) met with us
and said that if we wanted him to have any chance of seeing we needed to
do laser eye surgery. So, at two months old, Avery had his second
surgery. It was determined that his hydrocephalus(fluid on the brain) wasn’t improving and
in order to be able to go home he would need a permanent VP Shunt.
Pulling the fluid off via the reservoir was helping but it just wasn’t
providing the constant movement that he needed in order to minimize
further brain damage. So we had our third surgery at a little less than
three months old to place the VP Shunt. That seemed to be the missing
piece and after the surgery Avery took off in the nursery. He began to
eat better and they decided that four days after the surgery he was
clear to go home! He spent a total of 98 days in the nursery. Funny
enough, that was only 3 days longer than his twin sister that had a
pretty “normal” course in the nursery.
Once we were out of the hospital,
things were going well. We were complete germaphobics, but that was OK
because the worst thing we suffered through that winter was an ear
infection! I don’t know many term babies that have it that good. So, we
thought we were on the path to normalcy until we went for a routine CT
scan in April to evaluate the progress of the VP shunt. Sadly, the scan
showed that the shunt wasn’t moving as much of the fluid out of the
ventricles as was needed. So the day before they turned one, Avery had
to go into surgery and have a VP Shunt revision. Leaving them in the
hospital was extremely hard, but having one in the hospital and one at
home on their first birthday was heart breaking! But we were able to get
home before their party that weekend and celebrate with both babies, so
it turned out OK. A little over a month later, I noticed that Avery was
staring off and started spitting up more. I called the neurosurgeon and
they did another CT scan to find out that the revision had fixed one
problem by emptying out one of the ventricles but that had created
another problem because it was emptying so much that it was collapsing
around the catheter and therefore not allowing the other side to drain.
So a little more than a month later we went in for our second VP Shunt
revision which (fingers crossed) has seemed to do the trick.
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| First Birthday |
The last
scan that Avery had was beautiful. Recently he was diagnosed with a form
of epilepsy called Hemi Hypsarrrhythmia. We thought that we had it
under control with medication, but on Friday of Memorial Day Weekend, I
found him in his bed having a seizure. Because we didn’t have a
medication to stop the seizure, it got out of control and he had to be
air lifted to Duke University Hospital. He was intubated for two days
and spent some time in the PICU. He came home a couple of weeks ago and
is back to his normal self. We have increased medication and now have an
emergency dose of Valium to give him in the event that he does have
another seizure. On June 18 went back to Duke for Avery’s
sixth surgery to have a G-Tube placed. Although he does eat by mouth, he
just wasn't taking in the quantity that he needs in order to thrive. At
two years old, he barely weighs twenty pounds. He doesn’t have a
specific diagnosis but has been put under the CP umbrella. At the moment
we are just allowing him to tell us who he is and what he can do. He
sees a speech therapist (eating & speaking), occupational therapist
(he keeps his right hand clenched and though he can open and close it,
he doesn’t have the ability to actually use it), vision therapist and a
physical therapist. He also has hearing loss in his right ear so he has a
hearing aid. He can roll and kick around on the floor (his favorite
thing to do) and can make some sounds (Ba, Buh, Ma etc).
2.How is life raising a special needs kiddo and having another child?
It’s
tough. To be completely honest, sometimes I ask myself – Is this really
my life? I know that may sound harsh but it is one of those situations
that you think would never happen to you, but it did. There is no manual
so you constantly worry if you’re doing right by both kids. BUT – it is
wonderful more than it is frustrating and that is what makes it
completely worth all the hard stuff. I compare their developmental
differences to a parent who has a toddler and an infant. It can be hard
to make sure that I am being fair to both kids. Raegan wants to move,
play, talk, sing and explore the world. Avery wants to lay on the floor,
roll over, be held and make baby noises. It can be difficult to meet
both of their needs.
The biggest hardship though is to treat them the
same when they are so different. We have to make sure that we are
conscious of Raegan’s feelings and how we treat her when she is
interacting with Avery. I try to not over react when she accidentally
falls on him or wants to take him something that will inevitably spill
on him. She very much wants to be a part of his world and the balance
between keeping him safe and allowing her to interact with him can be
hard to find sometimes. We had to learn a long time ago not to say “no,
Raegan” every time she approached him. We didn’t want her to think he
was “off limits” or even create a divide in her mind where she wouldn’t
want to play with him or even resent him. So we make every effort to
make her a part of everything that we do with him – including therapy
and doctor’s appointments. My biggest fears are that one is being left
out. That Avery feels segregated from what we are doing or that Raegan
isn’t getting paid attention to because we are focusing so much on
Avery’s special needs. What moves you forward is moments when after you
have given her a kiss or a hug, she will look at you and say “give Avery
a hug”. She truly loves him and things like that tell me that although
we may not be doing everything exactly right, we are doing OK.
3.How do you find support for raising a special needs kiddo?
We
made lasting relationships with the nurses & NNPs that we met while
we were in the hospital and area able to ask them for the things that
they know about. Although they may not be their birth children, they
have dealt with special needs far longer than we have and have gained a
lot of valuable knowledge along the way. Because of the kids low birth
weight we qualified for an early intervention program through the state
of NC. They have been a valuable resource. Other than that, keeping in
touch with parents we were in the ICN with and bouncing ideas off of
them. The best advice I was given was DO NOT GOOGLE ANYTHING. I usually
ask whomever I am speaking with for resources and do my research that
way. Google is a good tool – but it can scare the hell out of you!
4.What has your son taught you?
Most
of all patience. I have long since been a type A personality. I like to
know the who, what, where and when of everything. I am a planner and
like things to go according to that plan. Naturally, having a child come
into your life throws the “planning” out of whack. But when you have a
special needs child, it just all goes out the window. So, I’ve learned
to be patient and that not everything has to “fall in line” exactly as
it’s supposed to. In fact, if you give “flying by the seat of your
pants” a try, it can actually be fun. And a lot less stressful on your
children –whether special needs or not. It all goes “perfect” when at
the end of the day, everyone is smiling at each other and you can giggle
over whatever took place that day.
5.What is the biggest challenge about raising your son?
The
biggest challenge is actually my own. My biggest challenge is fear. I
am afraid that he isn’t happy. I am afraid that I’m not the right mom
for him. I am afraid that I’m not doing enough for him. I am afraid that
I am pushing him too much. I am afraid that people will treat him
poorly. I am afraid that he will feel left out, inadequate. I am afraid
that he will not have independence. I am afraid that he will gain
independence and then I won’t have the strength to let him be
independent. I am afraid that I will lose my son. I think every parent
deals with fear – mine is just exacerbated, and I worry that my fear
will get in the way.
6.What is your favorite thing about your son?
His
smile and laugh. It’s reassuring that he is happy. And his smile is
one of the most infectious things on this earth! It truly lights up a
room. He also has a gentle nature and is extremely laid back even with
all that he has been through. I feel very blessed.
7. Anything else you'd like to add about your son, family, or yourself.
I guess I just want everyone to know how blessed we feel. Yes we have
obstacles - but doesn’t everyone? Our obstacles are just a little more
apparent than your average family’s. And we do our very best to take
everything as it comes and be as positive as possible. Our family and
friends (whom we consider a part of our family) help us to be positive
and keep going. We learned really early to appreciate everything and
though I wish the twins hadn’t come early and I wish Avery hadn’t had to
go through all of the hardships that we have – we actually consider
ourselves very lucky. Things happen for a reason and had they not
happened the way that they did, many people whom I hold very dear to my
heart may not have crossed my path. So, people may look at us with pity –
but I look at us as pretty lucky because our lives are truly enriched
by the love that surrounds us. Avery and Raegan are nothing but pure joy
and I am blessed to be their Mommy!
