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.
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?
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."
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?
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.
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.
Miggy: Explain how Josettes’s needs currently affect 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.
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.
Miggy: What are the biggest worries you face for 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.
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?
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.
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?
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.
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!
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?
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.
Miggy: What is the biggest lesson you’ve learned 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."
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.
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.
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!