So I know I said I’d focus a good deal of these posts on
Ellie’s care team, but the folks in this post were both Ellie’s team and my
team, before Ellie was here. They took
amazing care of me and supported our family through a very stressful
pregnancy. I actually wrote about most
of these folks in our very first blog post.
Since that’s been over three and a half years, it’s not a terrible idea
to shine some spotlight their way, again.
After three years of hearing out other families and listening
to hundreds of diagnosis stories, I’m even more grateful for this team than I
was before I had Ellie. Our diagnoses
were given gently and with compassion – not to mention a very real sense that
the doctors acknowledged that this was our BABY… and we loved her dearly. We were never encouraged to terminate our
pregnancy – but I’ve only met one other family who had that same
experience. This makes my heart
hurt. Just last month, the Ohio House passed
legislation to ban abortion because of a Down syndrome diagnosis. This is incredible, really! While it likely won’t change how a parent
feels about an unborn child, this bill will likely change the language used by
medical professionals when they deliver such a diagnosis.
The diagnosis of Down syndrome, in and of itself, was hard to
swallow during pregnancy. If I had known
just how hard our road would be once she arrived, I don’t imagine that I would
have enjoyed my pregnancy as much as I did.
However, this team I’m going to recognize moved mountains to give us the
best care possible. We had a ridiculous
amount of appointments between 18 and 40 weeks in my pregnancy… but we’re
thankful for those crazy weeks and the attentiveness of this team.
1) Dr. Dev – OB – Sidney
I vividly remember getting the call from Sasha (a
nurse in Dr. Dev’s office) asking us to come in to discuss our quad screening
results. He went on to inform us that
the results came back flagged for Down syndrome (we had a 1 in 93 chance
instead of the 1 in 277 chance they expected for my age) and that we could do a
non-invasive blood draw on me to determine with 99.6% accuracy if our child did
have Down syndrome. After ten long days,
we were brought back in to discuss again.
Brandon and I were a mess of emotions, but Dr. Dev came into the
ultrasound room and said, “Do you want to know the sex of your baby?” “Of course”.
“Well, you’re having a girl… and it does look like she has Down
syndrome. Let’s take a look at her.” He went on to do an incredibly detailed
ultrasound. When we heard her tiny heart
beating, we completely lost it. From
here, we’d be referred to the next on our list and continue through our
pregnancy with appointments both with Dr. Dev and Perinatal Partners. Dr. Dev would finally release us from his
care when I was 37 weeks pregnant. When
I came back to his office (when Ellie was about six months old, he’d ask about
her and marvel at her when I’d bring her in.
I’ve always been in awe of how he handled our
diagnosis (especially compared to other stories I’ve heard). A few months ago I saw him at Shelby Hills
for their anniversary celebration for Shelby County Board of Developmental
Disabilities. It’s no surprise to me
that he supports the board of DD. It was
also no surprise to me when I learned several years ago that he spent time at
the Women’s Center in Sidney making sure that all women had access to great
prenatal care. He’s an amazing man – a sweet
soul – and the guy who delivered both of our boys. We love Dr. Dev!
2) Maternal
Fetal Medicine – Perinatal Partners – Vandalia & Dayton
As I said above, we were referred to Perinatal
Partners after our 18 week ultrasound where Dr. Dev found a heart defect. We made an appointment for a month out. As we drove to Vandalia for that first
appointment, I sank my head back into the headrest in the car as Brandon
drove. Tears burned down my cheeks and
my heart thumped hard in my chest. I
knew we were going down there to investigate Ellie’s heart and I was
terrified. We met Rachel, a genetic
counselor, and she gave us the phone number of Lisa, a fellow genetic counselor
who had a daughter with Down syndrome.
[Little did we know we’d come to know Lisa later through the Miami
Valley Down Syndrome Association and through Dayton Children’s] After taking an extensive family history and
asking a battery of questions, Rachel walked us down the hall to meet Lara, our
ultrasound tech. Lara would spend about
45 minutes checking out our Bug with an ultrasound and fetal echo. Half of that time was spent checking out
Ellie’s heart. Lara burnt our entire
ultrasound to a DVD for us to take and spent a little time letting us see Ellie’s
face, too.
Remember this cute face from a much earlier blog post? She was cute then, too!
Shortly thereafter, Dr. Sonek came in to talk to us
about our tests. He said that there were
several additional markers for Down syndrome, but we could only know for sure
with an amniocentesis. We declined. He then told us that he was referring us to
Dayton Children’s Cardiology (insert Dr. Luby from the last post) and said it
looked like our daughter had an endocardial cushion defect – also called an AV
Canal Defect. I lost it in the car
because I’d done my research on this defect and was now saddened and terrified
with this turn of events.
We’d go on to have many more appointments at Perinatal
Partners (also called MFMUG – Maternal Fetal Medicine, Ultrasound and Genetics…
I think I have that acronym correct). We’d
meet Dr. McKenna (who would later be there when Ellie was delivered) and Dr.
Glover (who would admit me for pre-eclampsia when Ellie was 4 days old).
The last time we saw the staff at MFMUG, I was back
for my six-week follow-up and I came in toting Ellie and her brand new NG
tube. The staff went crazy over
her. Again, another office and another
fabulous experience!!
3) Dr. Josh
Steinke – Steinke Family Chiropractic – Wapak
We started to get chiropractic care with Dr. Josh the
same month he opened his office (May 2012).
I was very pregnant with Kaleb at the time and had a good deal of
pregnancy-related discomfort that he helped me through. He adjusted Kaleb when he was four days old
and has been there for us through the past five years of our roller coaster. When I was pregnant with Ellie, I had regular
care. When diagnoses started rolling in,
he was there to support us and pray for us.
When we brought our tiny peanut in for him to adjust, he held her close
to his chest and kissed her little head.
He’s prayed over our family many times and cares for our whole family. We really need to get in to his office more
often, that’s for sure! He’s the first
person to call Ellie “delicate” and it’s the perfect description for her. She may not always be a fan of adjustments…
but Dr. Josh is gentle and accommodating for her. He’s also great at reminding us of the things
he’s keeping a keen eye on because of the common troubles associated with Down
syndrome (like tiny ear canals that are very susceptible to blockage and
draining issues).
I knew I had a picture of her 1st adjustment somewhere. :)
You can call me crazy, but I really do believe that
Dr. Josh is a HUGE reason why we’ve not had issues with ear infections for any
of our kids. I also totally credit him
with the difference in my labor and birth experiences with Kaleb and
Ellie. He’s a kind soul and even when I
know he has so many clients, he greets each one with enthusiasm and dishes out
plenty of time and attention. Man… I
really need to get the family back there… like, now!
So yeah – this is the team that cared for us during
our pregnancy and gave us endless support through the unknown craziness of that
time. This prenatal care team wraps up
the group I want to recognize and thank on our 2nd Day of Christmas
post. Thank you for reading along! I know I tend to ramble on – sorry about
that.
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