The Big Tube Wean: nearly a year later

I thought to myself the other day that I should update on Brenna’s oral eating and gluten-free diet…and then I remembered when we actually started this whole tube weaning process and realized something: it’s been almost a YEAR.

In February 2013, we forged ahead with a plan to get Brenna to eat by mouth. At that time, she was taking one or two small sips of water from a sippy cup and maybe 4-6 tiny bites of foods like pizza sauce.

And in less than a year, using her g-tube is not even on my radar anymore.

Our feeding pump George sits alone and isolated in a closet somewhere in our new house. The syringes and boluses and tubing previously used multiple times a day are now untouched in a drawer in our kitchen. I haven’t even called the medical supply company from our new address, which we’ve been at since August.

We haven’t used Brenna’s g-tube since last summer.

The first couple of weeks with the tube wean were all-consuming and very tough. Because her body uses up so many calories to make skin, Brenna needs a huge amount every day just to maintain her weight. She lost weight very rapidly during those first weeks, and even throughout different points in the first few months of the tube wean, and we had to monitor her weight and her hydration so closely. At several points, she was extremely close (within tenths of a pound) to hitting the maximum amount of weight that her feeding team would let her lose before pulling her off the wean.IMG_4192Within 12 weeks, we finally were able to stop feeding Brenna her night-time feeding. Not having to hook her up to a machine while she went to sleep was a huge turning point for us!

And then finally during the fourth month of the tube wean, we saw a break-through: not needing her feeding tube except for medicine.

Oh, the freedom. Oh, the celebration.

To be able to wash bibs. To be able to go visit someone’s house without George the Feeding Pump packed into the van. To be able to participate in mealtimes, both at our house and and others’. To be able to pack snacks and sippy cups.IMG_4989

And to be able to stop blending up food and using syrgines to feed my child. To get to stop cleaning up green gooey spills when the syringe would pop out of the tubing…and the vomit that plagued our house. Because when you’re tube feeding a baby? They can’t tell you they’re too full. They can’t stop eating like oral eaters can. And you have to decide on JUST the right amount that will keep your child gaining weight and growing, but not so much that it all comes back up. That balance, my friends, is a hard one to achieve…and I’m not sure I will ever forget the sounds of Brenna throwing up in her crib during a night-time feed and the smells that followed.

And then somewhere along the lines during the 6th or 7th month, Brenna began drinking all of her meds by mouth. Any medicine, any time – she has never seemed bothered by the taste.

And we have never looked back.

Her weight gain is slow. But it’s there, as each weigh-in produces a slightly higher number than the date on the chart above it. She’s tipping the scales now at 21.5 pounds.

And I actually had the thought this winter that I’ve been too afraid to dream about since her g-tube was placed: if her tube came out, I think everything would be OK.

Sure, I might be worried. She’s entered a slightly picky stage where she doesn’t like to try new things…but then again, she’s 3. And we still haven’t experienced an actual illness where she continues to eat and drink through being sick (knock on wood – stay away, flu!) But she has been eating and drinking so comfortably, so confidently, so naturally, for 6 months now, that you would never know she was completely tube-dependent for half of her life.IMG_5523

Even trying a gluten-free diet has not been much of a challenge because she loves meats and dairy products so much – and those are the ones that pack in the calories, so I’m definitely not complaining! Unfortunately, I’m just not convinced that going gluten-free has been impacting her arthritis very much at this point. Her fingers are still so swollen, her toes and feet are really puffy and she asked me to rub her toes a lot, and she’s showing some signs of joint discomfort in her hips and knees.

Other than that, Brenna eats like a champ – even in the midst of her newfound picky-ness. Dinner times are struggles, because she just wants her favorite foods and doesn’t bother to give new things a chance, but we’re just continuing to expose and to require that she tries everything at least once before making up her mind. Quite honestly, we probably enforce dinner rules much more out of fairness to Connor, who has the same rules, than the fact that we actually care what she eats. Because she’s eating and a lot of it.

I don’t miss George the Feeding Pump.

I don’t miss my blender.

I don’t miss tube feeding.

It’s been nearly a year, and we’ve gone from a tube-dependent child to a kid who can be bribed using food because she loves to eat so much. Oral eating, for the win!

I’m just as much of a superhero mom as you would be if it was your child

Mothers of children with special needs are often heralded as pretty special themselves… being called supermoms, and “chosen especially by God,” and most frequently “inspirational.”

There are some who perpetuate that, writing about how isolated special needs moms feel, what with all that we do on a daily basis and with friends who just don’t “get it.”

I’ve sort of wavered in the middle of two grounds for a while – being embarrassed about the praises on occasion, and yet in full, proud agreement at other times.

I read this post about the superpowers that special needs moms have, and I thought “That’s RIGHT! I am AWESOME!” And then I read this post advocating that special needs moms really aren’t so special after all – ALL moms are…and then I thought “That’s RIGHT! I’m not awesome – we’re all AWESOME!”

But then.

Then I sit through weekly doctors appointments and manage multiple medications, and I do a scrubbing bleach bath every day to keep my daughter’s skin healthy, and I celebrate that at three years old, she is finally strong enough to carry a single children’s cereal bowl to the cabinet while we unload the dishwasher… and I am forced to acknowledge that there may be a little difference.

HOWEVER. What I ultimately think about the “difference” in mothering is this: I, as a mother to a daughter with different needs, am not doing anything for my child that you wouldn’t do if it was your child.

I’m just as much of a “supermom” as you would be if it was your child.

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At times, it’s been hard to suppress frustration and anger at fellow moms with “typical” children…listening to moms cry about their baby’s first shots when I’m sitting in the OR recovery room waiting for my baby to come out of surgery. Or hearing them freak out about transitioning from the bottle to the sippy cup, while I’m over here changing out a tube in my daughter’s stomach and blending up food and formula to push through said tube at dinnertime.

But how could I resent the mother with a typical child? I was once her. I was once that mom who complained about teething and worried about moving to a cup after nursing.b116

And even now, knowing that it can be so much harder when health problems are involved – that if you experienced tube-feeding, you’d be wishing on every star for sippy cup battles – I sometimes just need to stop and remind myself that it’s all hard.

Life is hard…until it gets harder, and then that feels hard.

One kid seems hard until you have two. Two seem hard until you have four.

Autism is hard. Down syndrome is hard. Cerebral palsy is hard. Ichthyosis is hard.

Having a newborn is hard. But having an independent toddler is hard too. The junior high years are hard, and so are the high school years. It’s all hard.

And yet we rise to every new level of hard, because that’s what we do as loving parents. We are willing to take on whatever kind of hard is thrown at us. Love makes us willing.

Our challenges don’t diminish other people’s challenges. And maybe instead of comparing our challenges, we can use it as a point to connect…to say to each other “this is hard, and you’re doing a great job.”

I may be doing “more” on a daily basis when it comes to caring for the health of my daughter, and there may be some things that our family has to experience or do differently because of this skin disorder… but I firmly believe that you would do the same thing if it was your child. Our universal superpower as parents is love, and we’re all just doing our best.cIMG_2065

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Encouraging Understanding with Openness: a guest post by Hunter Steinitz

There is a young woman who popped up over and over in our Google searches of Harlequin Ichthyosis when Brenna was just a couple of days old, and this young woman gave us so much hope that it brings tears to my eyes just to think about. Hunter is one of the oldest people in the country living with Harlequin, and she and her family have been long-time advocates and educators about ichthyosis. 

Hunter is now 20 years old and in COLLEGE! She was featured on National Geographic’s special episode on Skin when she was just 14, and last year, she made an appearance on Katie Couric, educating people about this disorder and what it means for her daily life. We got to meet Hunter and her dad last year at the FIRST conference, and she is truly a LIGHT in this world… she is someone that I know will be a tremendous role model for Brenna as she grows up, and we’re so grateful to know her. Thank you, Hunter, for everything you do, and for taking the time to share a piece of your life on my blog today…

College is a time of independence and exploration. Regardless of background, it also brings a certain level of anxiety with it. The fear of being away from home in a new environment surrounded by strangers is massive for anyone. However, that fear is especially great when coupled with Ichthyosis.

A big part of dealing with transitioning to college life is learning how to understand another person’s perspective. Sometimes understanding that requires first understanding yourself.

During my first few days as a college freshman, I was a bit isolated. The change from living at home to living in a dorm was daunting and terrifying. Even though I was very open about my disorder and willing to answer questions, it took me a while to connect with people beyond basic pleasantries.image3

One day though, I walked down the hall and was about to enter my room when something caught my eye. There was a small sticky note stuck to my door.

The note said, “If people stare, give them something worth staring at!”

There was no name on that note. I had no idea who had left it! But the little boost that little note gave me was more than enough to get me through. I took that note and taped it up above my desk, that way I could see it and remember that whenever I needed a little reminder.

I later found out that my now best friend Ariel left that note. She is literally one of my closest friends and I love her dearly! The fear of being on my own was quickly overshadowed by a feeling of welcome and compassion!image2

As amazing as those experiences are, it took me a long time to get to that place, to be open enough to trust those around me not to hurt me.

Isolation and loneliness were things that I struggled with a lot going into the end of my senior year of high school. A lot of that came from my position within my graduating class at the time. I was at odds with multiple people because of my skin. Throughout high school I butted heads with people because I didn’t understand why it was so hard for them to be open-minded and to accept me. I attributed their behavior to their ignorance and for the most part, that was the case. However, I learned that how other people experience me will reflect how I experience them.

My encounters with people from different backgrounds and creeds have opened my eyes to what it takes to be open with someone. I was very on edge for most of my high school career because I had been so badly treated in middle school. I was looking for the cardinal signs of bullying, and I often misinterpreted misunderstanding for malice. I read cruel intent where there was only confusion and fear.

Since then, I have found that if I am as open and trusting as I would like others to be, they will warm up to me and become more understanding.

Because I now have a great big group of loving friends, I no longer struggle with those feelings of isolation. I have been blessed with a group of people that would never leave or desert me. College can be a daunting and overwhelming thing, but I have found that the more open to new experiences you are, the more wonderful that people and experiences will fill any emptiness.IMG_1640

Read more about Hunter’s college experience in an article featured in her college’s magazine (on pages 12 and 13).