Thanks for featuring families
on your Special Needs Spotlight every week. It has been such an
encouragement to me, and I’m excited to share our family’s story now. My
husband and I are the lucky mama and daddy to Jude (5), Josette (2), andAlma (2
months). Josette was born at 35 1/2 weeks after a wonderful and
“normal” pregnancy. Twenty-four hours after birth, Josette
still had not pooped and began throwing up.
She was admitted to the NICU and after a surgery when she was 2 days
old, she was diagnosed with jejunal atresia type IIIB, or Apple Peel Syndrome.
This is a really rare condition (Josette’s about #60 in recorded cases)
in which the artery supporting the small intestines never forms, leaving the
small intestines without adequate blood supply or support, and it kind of just
spirals away from the rest of the intestines. As a result, about 24 cm of
her small intestines had died away. After 3 surgeries and 3 months of no
poop and being “fed” by TPN, Josette’s intestines finally were
connected, opened, and working. She was released from the NICU at 5 1/2
months. She’ll turn 3 next month, and we
are thankful every day for how far Josette has come from those first scary
months.
on your Special Needs Spotlight every week. It has been such an
encouragement to me, and I’m excited to share our family’s story now. My
husband and I are the lucky mama and daddy to Jude (5), Josette (2), andAlma (2
months). Josette was born at 35 1/2 weeks after a wonderful and
“normal” pregnancy. Twenty-four hours after birth, Josette
still had not pooped and began throwing up.
She was admitted to the NICU and after a surgery when she was 2 days
old, she was diagnosed with jejunal atresia type IIIB, or Apple Peel Syndrome.
This is a really rare condition (Josette’s about #60 in recorded cases)
in which the artery supporting the small intestines never forms, leaving the
small intestines without adequate blood supply or support, and it kind of just
spirals away from the rest of the intestines. As a result, about 24 cm of
her small intestines had died away. After 3 surgeries and 3 months of no
poop and being “fed” by TPN, Josette’s intestines finally were
connected, opened, and working. She was released from the NICU at 5 1/2
months. She’ll turn 3 next month, and we
are thankful every day for how far Josette has come from those first scary
months.
***************
Miggy: Can you take us back to the day Josette was
born–what happened, how did you come to find out about her condition?
Do you remember how you felt? Can you compare those first
thoughts and feelings with how you feel now?
born–what happened, how did you come to find out about her condition?
Do you remember how you felt? Can you compare those first
thoughts and feelings with how you feel now?
Johanna: The surgeon initially thought the surgery
would be relatively minor and short, so after 4 hours, I had an inkling that
something was wrong. When he came into the waiting room, I could tell by
his face that the news was very bad. I remember thinking, “This
isn’t happening to us. This can’t be happening.” My first
question was whether or not she would even survive. I think most of us,
consciously or not, have hopes and dreams for our children from the moment we
find out they exist in the womb, and to think that Josette might not even
survive her first week was shattering. Fast-forward almost three years
later, I want to go back to that waiting room and whisper in my ear, “This
will be okay. Everything will be different than you imagined, but even
better than you dreamed.”
would be relatively minor and short, so after 4 hours, I had an inkling that
something was wrong. When he came into the waiting room, I could tell by
his face that the news was very bad. I remember thinking, “This
isn’t happening to us. This can’t be happening.” My first
question was whether or not she would even survive. I think most of us,
consciously or not, have hopes and dreams for our children from the moment we
find out they exist in the womb, and to think that Josette might not even
survive her first week was shattering. Fast-forward almost three years
later, I want to go back to that waiting room and whisper in my ear, “This
will be okay. Everything will be different than you imagined, but even
better than you dreamed.”
Miggy: As Josette’s condition came to light in the
coming days–what did those initial weeks and months look like? How did
you cope? And what advice would you give another mother who finds herself
in a similar, unexpected situation?
coming days–what did those initial weeks and months look like? How did
you cope? And what advice would you give another mother who finds herself
in a similar, unexpected situation?
Johanna: Josette had 2 surgeries in the first 3 weeks
of life, and her 3rd surgery when she was 2 1/2 months old. My husband
and I split most days with one of us at the hospital and one of us home with
our son. Josette’s primary nurses were amazing, and they became family to
us very quickly. I tried to find little ways to celebrate even the
tiniest milestones and brought cupcakes in every month for the nurses to
“celebrate” that Josette had survived another month. My parents
moved in with us to help for 3 months, and a group of friends created a
meal/cleaning/grocery shopping schedule for us. I read through the Psalms
for encouragement while I sat by Josette’s isolet/crib.
of life, and her 3rd surgery when she was 2 1/2 months old. My husband
and I split most days with one of us at the hospital and one of us home with
our son. Josette’s primary nurses were amazing, and they became family to
us very quickly. I tried to find little ways to celebrate even the
tiniest milestones and brought cupcakes in every month for the nurses to
“celebrate” that Josette had survived another month. My parents
moved in with us to help for 3 months, and a group of friends created a
meal/cleaning/grocery shopping schedule for us. I read through the Psalms
for encouragement while I sat by Josette’s isolet/crib.
My
advice to other NICU mommies would be to have lots of grace for yourself,
accept help, and to try to embrace this new “normal” as much as
possible. We met some amazing medical staff and fellow NICU families
during our stay and despite the moments of gut-wrenching worry and stress, we
have some really sweet memories of our time “living” in the NICU.
advice to other NICU mommies would be to have lots of grace for yourself,
accept help, and to try to embrace this new “normal” as much as
possible. We met some amazing medical staff and fellow NICU families
during our stay and despite the moments of gut-wrenching worry and stress, we
have some really sweet memories of our time “living” in the NICU.
Miggy: Explain how Josettes’s needs currently affect
your day-to-day life?
your day-to-day life?
Johanna: Compared to a year or two ago, Josette’s day
seems pretty similar to other kiddos her age, with the exception of her therapy
interventions. She has some struggles with low muscle tone, gross and
fine motor skills, and speech. To help her work on these areas, she has
physical therapy and speech therapy every week, occupational therapy twice a
month, and a speech therapy playgroup every week. A GI doctor,
pediatrician, neurologist, and nutritionist follow her progress, so we go to
the doctor’s office about once a month. An unrelated kidney issue just
cropped up again in the last month, so she will have kidney surgery and a
little reunion with the hospital staff next month.
seems pretty similar to other kiddos her age, with the exception of her therapy
interventions. She has some struggles with low muscle tone, gross and
fine motor skills, and speech. To help her work on these areas, she has
physical therapy and speech therapy every week, occupational therapy twice a
month, and a speech therapy playgroup every week. A GI doctor,
pediatrician, neurologist, and nutritionist follow her progress, so we go to
the doctor’s office about once a month. An unrelated kidney issue just
cropped up again in the last month, so she will have kidney surgery and a
little reunion with the hospital staff next month.
Josette
also struggles to gain weight (due to her shortened small intestines), so we
really push calories and a full fat diet around our house. In my mind, I
am always calculating calories, protein, fat, and fiber, and conniving ways to
sneak more of them into Josette’s meals. We are still trying to figure
out if she can process dairy, so she can only have one serving of dairy a day
right now. Sometimes we have to get a little creative about getting those
fat calories eaten…like drizzling olive oil over her eggs or sneaking almond
meal into her smoothies.
also struggles to gain weight (due to her shortened small intestines), so we
really push calories and a full fat diet around our house. In my mind, I
am always calculating calories, protein, fat, and fiber, and conniving ways to
sneak more of them into Josette’s meals. We are still trying to figure
out if she can process dairy, so she can only have one serving of dairy a day
right now. Sometimes we have to get a little creative about getting those
fat calories eaten…like drizzling olive oil over her eggs or sneaking almond
meal into her smoothies.
Miggy: What are the biggest worries you face for
Josette?
Josette?
Johanna: Right now, I would really like to give
Josette the gift of speech. She really, really wants to communicate with
us, and has great stories to tell, but she only has about 7 words and 30 signs
to use right now. Sometimes I worry that she might not ever be able to
speak and tell us everything on her mind. I worry sometimes that she is
in pain but can’t tell us. Like most parents, I also want to shield her
from the stares and unkind comments in the world. I know that as she gets
older, I won’t be able to protect her from that harsh reality of life, and that
just really stinks.
Josette the gift of speech. She really, really wants to communicate with
us, and has great stories to tell, but she only has about 7 words and 30 signs
to use right now. Sometimes I worry that she might not ever be able to
speak and tell us everything on her mind. I worry sometimes that she is
in pain but can’t tell us. Like most parents, I also want to shield her
from the stares and unkind comments in the world. I know that as she gets
older, I won’t be able to protect her from that harsh reality of life, and that
just really stinks.
Miggy: Now for a lighter question, I’m a big
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?
Johanna: Because Josette didn’t poop for 3 months, we
are kind of obsessed with poop around our house. My husband was present
for that first poop, which signified that everything was in working order in
Josette’s intestines. He begged the nurses to save the poopy diaper for
me. And, being awesome, they did. We are constantly analyzing
Josette’s poop for consistency, frequency, etc… and this creates some
interesting conversations around our house. The other day, my five year
old ran into the room and said, “Mom! You’ve got to see my poop in
the toilet. It’s MAGNIFICENT!!!” And when Alma was born this summer
and pooped within an hour of birth, we were squealing with joy and amazement.
Luckily, one of Josette’s NICU nurses was attending the delivery, so she
completely understood and suggested we take a photo of it. And we did.
So, yeah. We do love poop.
are kind of obsessed with poop around our house. My husband was present
for that first poop, which signified that everything was in working order in
Josette’s intestines. He begged the nurses to save the poopy diaper for
me. And, being awesome, they did. We are constantly analyzing
Josette’s poop for consistency, frequency, etc… and this creates some
interesting conversations around our house. The other day, my five year
old ran into the room and said, “Mom! You’ve got to see my poop in
the toilet. It’s MAGNIFICENT!!!” And when Alma was born this summer
and pooped within an hour of birth, we were squealing with joy and amazement.
Luckily, one of Josette’s NICU nurses was attending the delivery, so she
completely understood and suggested we take a photo of it. And we did.
So, yeah. We do love poop.
Miggy: How can people best approach or respond to
Josette? Is there something you wish other people knew so as to avoid awkward
or hurtful situations?
Josette? Is there something you wish other people knew so as to avoid awkward
or hurtful situations?
Johanna: I think I just want Josette to be included
just like everyone else. She is nonverbal right now, but she still loves
to communicate in her own way and lights up when someone acknowledges her and
engages her in conversation.
just like everyone else. She is nonverbal right now, but she still loves
to communicate in her own way and lights up when someone acknowledges her and
engages her in conversation.
Also,
if you are wondering about her development or progress, just ask! A few
friends never mentioned Josette in conversation with us while she was in the
NICU. I don’t think they meant to be hurtful; I think they didn’t
want to say something that would make us sad, so they just didn’t say
anything. But saying something is better than nothing; even if it comes
out awkward, at least I know you care!
if you are wondering about her development or progress, just ask! A few
friends never mentioned Josette in conversation with us while she was in the
NICU. I don’t think they meant to be hurtful; I think they didn’t
want to say something that would make us sad, so they just didn’t say
anything. But saying something is better than nothing; even if it comes
out awkward, at least I know you care!
Miggy: I know from firsthand experience what a
special role siblings can play in your special needs journey. Is there
anything you’d like to share about your other children and their relationship
to Josette?
special role siblings can play in your special needs journey. Is there
anything you’d like to share about your other children and their relationship
to Josette?
Johanna: Jude is a really amazing big bro. I
think he and Josette were definitely created to be siblings. Jude loves
doing “therapy” with Josette, showing her how to do a puzzle or
reading a book to her or trying to teach her a new word. And Josette thinks Jude hung the moon.
He has always been her favorite person, and she tries hard to imitate
whatever he is doing. Don’t get me wrong; there are plenty of sibling
spats, but Jude doesn’t think of Josette as “delayed” or
“special needs.” To him, she’s just Little Missy and the
perfect playmate. And that warms my heart. Alma’s arrival caused a
little confusion and jealousy for Josette, but she’s warming up to the idea of
being a big sister and loves to bring her blankets and practice tummy time with
her.
think he and Josette were definitely created to be siblings. Jude loves
doing “therapy” with Josette, showing her how to do a puzzle or
reading a book to her or trying to teach her a new word. And Josette thinks Jude hung the moon.
He has always been her favorite person, and she tries hard to imitate
whatever he is doing. Don’t get me wrong; there are plenty of sibling
spats, but Jude doesn’t think of Josette as “delayed” or
“special needs.” To him, she’s just Little Missy and the
perfect playmate. And that warms my heart. Alma’s arrival caused a
little confusion and jealousy for Josette, but she’s warming up to the idea of
being a big sister and loves to bring her blankets and practice tummy time with
her.
Miggy: What is the biggest lesson you’ve learned
since becoming Josette’s mom?
since becoming Josette’s mom?
Johanna: I think I have learned to be much less
judgmental of others. Everyone has struggles and challenges… some of us
just have more obvious ones than others. I try to remember that now.
When we meet someone who is extra snarky or get cut off on the highway by
a crazy driver, sometimes my husband or I will say, “Who knows?
Maybe they have a baby in the NICU and are just having one of those
days.”
judgmental of others. Everyone has struggles and challenges… some of us
just have more obvious ones than others. I try to remember that now.
When we meet someone who is extra snarky or get cut off on the highway by
a crazy driver, sometimes my husband or I will say, “Who knows?
Maybe they have a baby in the NICU and are just having one of those
days.”
One
hard lesson for me to learn was to not compare Josette’s developmental progress
to other kiddos her age. Therapists
frequently talked about “typical” developing children vs. Josette,
but I began to realize that Josette is on her own timeline for progress and
milestones. Comparison to others is not really helpful… t’s paralyzing.
hard lesson for me to learn was to not compare Josette’s developmental progress
to other kiddos her age. Therapists
frequently talked about “typical” developing children vs. Josette,
but I began to realize that Josette is on her own timeline for progress and
milestones. Comparison to others is not really helpful… t’s paralyzing.
I
also know that in
God’s eyes, Josette’s condition is not a mistake, a malformation, or a
delay. He
wasn’t freaking out with shock when Josette was diagnosed in the NICU. God has used these physical
challenges to make Josette’s life full of joy and purpose. She’s exactly who she is designed to be. It’s my
job to help guide her along her own unique path.
also know that in
God’s eyes, Josette’s condition is not a mistake, a malformation, or a
delay. He
wasn’t freaking out with shock when Josette was diagnosed in the NICU. God has used these physical
challenges to make Josette’s life full of joy and purpose. She’s exactly who she is designed to be. It’s my
job to help guide her along her own unique path.
***************
Thank you so much Johanna for sharing your sweet Josette today. I too wish I could go back in time and whisper in my ear that everything would be OK… hard to see in the thick of things, but yes sometimes things work out even better than we could have imagined. I also like the idea of keeping in mind a really bad day you had and that perhaps someone else is going through something similar… sometimes it’s hard not to jump to judgmental conclusions, but I think we’d all be better off it we tried! Thanks again for sharing your thoughts, experiences and most of all your wonderful family. Hugs to you and your sweet kiddos.
As always if you or anyone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Also, a father is running the NYC marathon to raise money and awareness for his daughter with EB, by selling 1,000 yellow shoe laces. EB or Epidermolysis Bullosa, is a very painful, disfiguring and often fatal skin disease which causes skin to blister at even the slightest touch (You may remember my spotlight on Daylon, who also has EB). Check out the website, 1000laces.com here if you’d like to lend your support.
Have a great weekend!
What a beautiful little girl! Thanks for sharing her story.
I'm Josette's Auntie Lala, and I'm so proud of this wee lady. She's beautiful, smart, funny, sweet, and incredibly mischievous. And my sister Johanna? Well, she's always been amazing. Thanks for featuring them on your blog.
Such a beautiful story! Thanks to Johanna for sharing!
Thanks for this post. I loved hearing more about Josette's story! Johanna's courage is inspirational to me!!
Hi Johanna, my son Jackson who was featured here last Oct was born with a similar ailment. Expect he ended up having most of his small bowel removed and still requires tpn to survive. I can totally understand the constant worry and stress of making sure enough calories are consumed in a day! Best of luck to your little girl and family!
Thank you so much for sharing this adorable little girl and her lovely family. I love these spotlights- so generous of the families and you x
Thank you so much for featuring Josette. The staff at the NICU which she was born, love her and her family very much and it was so moving and joyful to read the story of one of our favorite families we had here. Please come visit soon Josette, we would love to see you.
Your NICU family