2nd Annual Feeding Tube Awareness Week - Raising Awarenss in the Medical Community

Today you get a twofer as both yesterday and today's topics are about raising awareness in the medical community.  Thankfully, most of our experiences have been very good, but there are three things in particular I would like to tell the medical community as a whole, if I could.

The first is that my daughter is already traumatized, she has had tubes stuck up her nose, and other places we won't mention, needles everywhere, pokes, prods, woken up with arms tied down, masks on her face and many other things that she never understood.  Please don't do anything to make that worse.  And if you are a doctor, nurse, MA, PA, NP, receptionist, custodian or anyone who works at a medical facility don't ever let someone pull a Bard Button out of a child without pain management.  That five minute experience was likely the worst Naomi ever had, she's had more painful things done but the pain was managed.  The Bard Button incident happened one November day.  Naomi's first g-tube was a Bard Button which she had  for six months to allow her stoma to heal.  We were now going to switch it to a MicKey button that was lower profile and could be changed out at home.  We went into the procedure room had an okay visit with our GI nurse practitioner who nearly reduced me to tears when she told me I had to get more volume into my constantly puking three year old.  After that, she called in the GI doctor to switch her to a MicKey button.  He looked at me and said "This is going to hurt a little."  Well I was prepared, we'd done blood draws, injections, ng tubes, I had a book to distract her and Naomi lay on the table with her head in my lap while I held the book so she could see it but not her belly.  The doctor pulled out a metal thing and stuck it into her button and pulled.  Naomi let our an unearthly scream and he yelled at me to grad her hands which I did, he continued to pull and Naomi continued to scream, not the scream of a little girl but the scream of an injured animal.  Twice the metal device he held slipped off the button and after about two or three endless minutes the Bard button popped out with stomach contents and blood all over me, the doctor, and Naomi and Naomi, the nurse practitioner and I in tears.  Then I got a look at that thing.  The tube part was the diameter of a pencil or 18 french to be exact, it was held in place by what looked like half of one of those bouncy balls you can get for a quarter out of the machines at the supermarket and it had just been pulled through an opening the size of a pencil.  They give her an amnesiac before putting a mask over her face in the OR and didn't even suggest so much as Tylenol before this.  Naomi continued to cry for nearly two hours after that procedure.  That was the last time we ever went to that hospital.  I hope no other child or adult has to go through that without pain management.

The second thing I'd like the medical community to know is that when it comes to questions about food, I need you to ask very specific pointed questions.  Every time we go to the pulmonologist after we get her weight and height, o2, temp and blood pressure they ask their routine questions.  How often does she need her inhalers?  Have any of her medications changed?  Any procedures/hospitalizations since the last visit? How is her eating?  I do really well until the last one.  I just don't know what to say.  I don't know what they are asking.  Is she meeting her nutritional needs?  I think so.  Is the tube feeding going well?  No puke this week.  Is she eating well orally?  Well compared to last visit, yes, compared to her classmates, no.  At the pediatrician they will ask me what type of milk she drinks and how much.  I just stare, they stare back, I stare a little more and then finally say she doesn't drink milk and I want to follow that with it must say that a thousand times in her chart.  If you want to know about her eating be specific and I can answer that but with general questions I don't know what to answer.

Finally the last thing I want them to know is my daughter is a little girl made up of many parts and they're all connected.  She is not two ears, a nose and a throat, nor is she a GI tract, a brain and nerves, or a set of lungs and their airways.  Please communicate with her other doctors, you accomplish so much more that way and LISTEN to her therapists, they have spent far more time with her than you have.  She is a complete human being and even if you specialize in one area you need to see the picture as a whole, also as she ages she deserves a voice too, please talk to her even if she chooses not to respond.

I do want to close in saying we have met many clinicians, some we liked, some we didn't like and some we loved.  I do truly believe that each one does want to make Naomi better and for that I am deeply grateful.

2nd Annual Feeding Tube Awareness Week - How Has Awareness Changed Me

I've been contemplating what to share today for 48 hours now.  How has awareness about feeding tubes changed me?  I've always thought I was pretty accepting of people and their differences.  I guess the biggest change would be that I understand hunger better, I know what it looks like to starve.  Naomi was truly starving before she got her feeding tube.  About a year after Naomi got her tube I was watching a video from World Vision with my small group from church.  In the video they were talking about hunger throughout the world and then it showed a picture of a little boy in Africa who had a ng tube.  I watched him lay there with that tube, so spent from his starvation that he could not push the fly that crawled across his face away.  Very slowly that boy became more than a starving little boy in Africa, he became my daughter.  I remembered the days when she didn't have the energy to play, the times when she felt too awful to even snuggle.  My daughter never got to the point that little boy was at simply because she was born in a better zip code.  Had my daughter been born in the horn of Africa I might not have her.  That moment, that realization I think changed my life forever and if I hadn't understood what starvation is I couldn't have had that moment.  Since then I feel different about those who are hungry.  I have much more compassion.  Hunger makes you cranky, hunger gives you brain fog, hunger makes you tired, hunger makes it harder to work, harder to eat and harder to live.  I needed to do something.  Since then our family has chosen to sponsor children in Madagascar and the Philippines, we give money to build wells in Haiti, we regularly donate to our local food pantry and I am now there every week with Ladybug Connections striving to make a positive difference in the lives of others.  We got a second chance with Naomi and I hope to give others a second chance too.

I know it seems a strange jump feeding tubes, to starving children in Africa, to hungry families here in my town but really it isn't that far of a stretch.  We all need to eat and some of us need help doing so.

You can help the hungry abroad by supporting groups like World Vision, Nazarene Compassionate Ministries, Doctors Without Borders or a small group like Una Vida who gives dignified work to marginalized women in the Dominican Republic.

You can help the hungry locally, by finding your local food bank and giving food, money or time.  Every single time I step foot into the grocery store I buy something for the food pantry, this is double good, the food pantry gets food and I make less unnecessary trips to the store.  Also find out if you have a local soup kitchen, they could always use help.

Finally you can help the medically hungry, those who can't eat orally by supporting Feeding Tube Awareness, the United Mitochondrial Disease Foundation, The CURED foundation, your local Children's Hospital, or you could help me with my toy drive for Children's Hospital Oakland, the toys feed the spirit of hospitalized children.

These lists are nowhere near complete and please feel free to suggest other great organizations in the comments.

Just remember you can't save the world BUT you can be the world to someone.

2nd Annual Feeding Tube Awareness Week - A Day in Our Life

Today I will give you a glimpse of what a typical day for us is like, except that we don't have typical days so how about yesterday.  Yesterday started early with beeping, it is a sound somewhere between a commercial truck backing up and the fryer at your favorite fast food restaurant.  Naomi's pump is alarming saying "No Food" or "No Flow In" or "No Flow Out" and I still half asleep try to diagnose and correct the problem without turning on any lights or making any noise and waking the kids.  Thankfully this only happened once in the wee hours of the morning.  Then we had the 5 a.m. wake-up call because Naomi's bladder is bursting.  Most days she goes back to sleep and yesterday she did.  I get up and unhook Naomi from her feeding pump often before she wakes up and flush her tube with an ounce or so of water.  We get everyone up and the morning madness begins.  Trying to get lunches packed, breakfast eaten, hair brushed, clothing on and appropriate footwear and outerwear for everyone.  Naomi is served breakfast and yesterday like most days she refuses to eat anything.  Some days she even goes as far as dumping the plate on the floor, those are not good mornings.  We head off to school dropping the biggest kids at the elementary school and then taking Naomi to preschool.  Naomi LOVES preschool.  She has a mid morning snack there, which I am told most days she partakes in.  I pick her up and noon and then we come home for lunch.  Yesterday she cried and told me she didn't want lunch but when I insisted for the eighth time that she must come to the table, but didn't have to eat, she finally relented and came.  When she saw that she could use mini cookie cutters to cut her peanut butter and nutella sandwich into any shape she wanted she was excited to make it stars and ate about 3 stars which was about 1/4 of the sandwich.  She also took a few sips of chocolate milk and one bite of an apple.  Depending on how she had eaten orally that day she gets a bolus feed by tube after lunch.  Yesterday she got 6 ounces of blenderized diet (real foods we blend up in our high speed blender to be smooth enough to go through her tube).  We feed this by 60 ml (2 ounce) syringe.  The rest of the afternoon was spent playing, watching a movie and just being four.   We have another battle to get her to the dinner table (she insisted her tummy was full despite it having been 5 hours since she last ate).  Once there after carefully sliding her salmon off her plate she did eat about 1/2 cup of brown rice with Parmesan cheese and a few nibbles of broccoli.  After dinner is some quiet playtime, a bath and off to bed.  At bedtime, Naomi gets hooked up to her overnight feed which is 750ml (about 24 ounces) of pre-digested formula and a jar of baby food fruits or veggies.  We tuck her in bed hook her up and pray the pump will be nice to us tonight and not alarm too many times.

Our crazy nighttime setup.  Bethany in the top bunk, Naomi on the bottom, Mary in the trundle and hoping nobody trips on the tubes.  And craftily having Mary's head at the opposite end as Naomi's so she doesn't tug tubes and cause huge messes overnight.

Feeding her penguin and she gets a bit of water.

This was yesterday, some days are more complicated as she isn't on any medications or in a vomiting episode right now and she is hardly getting fed during the day in hopes of better oral eating.  Sometimes she is on slow continuous feeds when her gut is really unhappy and is hooked to her feeding pump 16-23 hours a day.  Some days are less complicated as she did have a point in time where she only got a small overnight feeding.

But really other than being tethered to her pump at night and some short day time feedings, Naomi is a typical little girl.  We do have to care for her tube which involves keeping it clean and dry, changing it out every 3 months, which we do at home and then we have to order her supplies as they aren't things we can get at the drugstore.

Posing for the camera!  And no she didn't hurt her nose she just loves Band-Aids and attention.

So there you have it a day with Naomi.

2nd Annual Feeding Tube Awareness Week - Why Naomi Has a Feeding Tube

I touched on this yesterday, but here it is a little more in depth.  First and foremost, we don't know exactly why Naomi doesn't eat.  There is not one overarching diagnosis that can explain it.  We have learned through meeting other families with similar children and many therapists who work with kids who struggle to eat that feeding problems in children are usually quite complex.  Here is what we do know about Naomi.  She had GERD (gastro-oesophogeal reflux disease) which adults know as heartburn, she had a moderate to severe case that got worse with age rather than better.  Her last ph probe though shows that was completely resolved.  She was anemic, anemia alone can lead to anorexia (lack of appetite).  She has Reactive Airway Disease, which is a sneaky way of saying she has asthma without calling it asthma.  When you struggle to breathe you need more calories and in young children it is often difficult to coordinate breathing and swallowing.  She had obstructive sleep apnea caused by large tonsils and adenoids, that also obstructed her ability to breathe through her nose and made swallowing more difficult.  Her tonsils and adenoids came out in April on 2010.  Her mouth muscles are weaker than a typical child her age.  She has had periods of time where her motility slows way down and her stomach and intestines "stall" and food just sits there, then she has had times when her stomach speeds way up and "dumps" its entire contents into her intestines, dumping syndrome.  Her intestines rebel and much vomiting ensues. 

None of these issues alone explains Naomi not eating and growing well but together they start to paint a picture.  A picture that says eating is painful, eating is uncomfortable, eating is scary, eating is exhausting. While still very young Naomi learned that for her all these things were true.  Most children learn that eating feels good, eating is fun, eating is exciting, eating gives me energy.  Eating is not instinctual (sucking is, but not eating).  Most kids learn that eating is good because as a newborn they cry because they are hungry (don't feel good), something is stuck in their mouth, they suck, they get food and their hunger is satisfied.  They feel much better, eating is good.  However when they feel worse after eating or something scary happens while they eat (choking and gagging, struggling to breathe) they learn that eating is bad.  So in a nutshell Naomi learned that eating is bad and now we struggle with teaching her that eating can be good.

Participating in Birthday's with cousins and her favorite princess on the cake helps teach that eating is good.

2nd Annual Feeding Tube Awareness Week - What Awareness Means to Me.

Naomi wearing instead of eating her food

At almost 2 years.

I never thought I'd be the mother of a child with a feeding tube.  I never thought my children would be anything other than perfect.  I should have figured out that things don't pan out like we hoped and planned when I developed pre-eclampsia with my first pregnancy and Sam was born after my first (and only) private Leer jet flight from Valdez to Anchorage for an urgent induction, but how quickly we forget the things that weren't according to our plans, especially when you're raising children.  After Sam, came Beth and after Beth came Eli , after Eli came Naomi and by that time I really had the hang of this mom thing.  I could nurse a baby, do dishes and read a book to one of the older kids all at once.  I could safely navigate four small children through Target and come out with my sanity still in tact.  I'd given up on store bought baby food, I had the food mill down and my baby was going to eat spice.  No bland diets for this one and then something changed.  Naomi didn't grow like the others had.  First she was dainty, then petite, then small, then downright skinny.  Naomi also didn't eat quite like the others.  She struggled to swallow purees, not quite sure what to do with them, she weaned herself from the breast not long after turning one, but didn't pick up drinking other things to make up for it.  We tried all sorts of tricks to get her to eat more and better, we gave her high calorie formulas mixed with half and half, I fed her with a sippy cup while she slept because she would suck out of instinct.  We worked so hard to get Naomi to grow, we went gluten free and started iron supplements when tests indicated celiac and anemia.  Not too long after Mary was born she started vomiting.  At least a few times a week and often hours after she had eaten.  We were lost.  We couldn't feed our baby and make her grow.  We tried medications that have the side effect of stimulating your appetite but they only had a short-lived effect.

In the hospital with the ng tube.

Squishing berries in her hair at feeding therapy.

Finally at 2 1/2 years Naomi wasn't just skinny, she was starving.  She had quit growing and her body was on the verge of consuming it's own organs to give her energy.  At that point we finally conceded that Naomi needed a feeding tube and she was admitted and received an ng tube.  The tube allowed her to start growing again but came with it's own difficulties, Naomi was disturbed by the tube down the back of her throat and she completely quit eating.  What a bittersweet realization that was.  The exact thing that was allowing my child to grow was preventing her from eating.  Two month later Naomi got a more permanent g-tube, a tube that goes through the abdominal wall directly into her stomach and two years later she still has it.  We don't know why Naomi wouldn't eat other than eating was uncomfortable for her.  We don't know why she did and still does vomit.  We don't know why sometimes her stomach and intestines move food too slow but we do know that Naomi has come a long way since then.  She is GROWING!!!  She is HEALTHY!!!  She is EATING!!! but not enough to survive.  Naomi can and does eat orally but she is still g-tube dependant.

Naomi can feed herself.

She eats on the go too with her backpack.

Okay, so finally getting to the point.  Awareness means to me that Naomi can go to school and be accepted by her peers as someone who just eats a little different.  Awareness means going to the ER or to some doctors and having them understand the journey we've been through.  Awareness means that another mother whose toddler is getting a tube for the very first time might not think she failed to feed her child, as I thought, but instead will know she is giving her child health.  Awareness means people asking questions instead of staring.  And most of all awareness means we don't have to hide that we are different. 

Awareness means not thinking of Naomi as disabled but instead thinking of her as super-abled.  Naomi can eat without moving a muscle, now that's impressive!

It keeps rotating this pic, but here's a Super Tubie with her Silly Sis!

A Whole New Do!

This post is long overdue, but I wanted to wait till we had shocked all our family in person.  Elijah has been clamoring for over a year to get a haircut like Sam's and daddy's.  I have nothing against crew cut or the regulation military cut, whatever you'd like to call it, it's just that I love Elijah's hair, thick beautiful blond locks.  Elijah is my biggest (for his age) and I just want to cherish his babyhood as long as I can but he likes to remind me that he is five and five is quite big.  So the second week of April we took the plunge and let daddy cut his hair.

Once Daddy got started I began to have regrets.  I never thought I was attached to Elijah's hair.  He was growing up very quickly in a matter of minutes, instead of slowly over weeks and months.  And daddy cut it shorter than I had anticipated.  I think I almost hyperventilated as I watched all those beautiful locks drop down into the bathtub.  I did realize Elijah does have some awfully cute freckles on his head.  These are new since his bald stage from birth -2 years. 

Elijah loved the new hairstyle immediately.  After all he had lobbied for it for nearly a year.

Although a bit slower, I am coming to love it, how could I deny my little boy such glee, even if it makes him look so much older to me.  I must remember that five is quite big.

I received this in an email on Mother's Day from a special mom friend Judy.  Judy and I would probably never have met if it weren't for our special children and now although we see each other only monthly and communicate sparingly online, I count her as a cherished friend. 

One thing this journey with a special needs child has taught me is that joy shared gets multiplied and burdens shared are divided. 

So to all my mom friends I cherish you and the support you give me, and for those journeying in Holland with me I cherish you all the more.


TO YOU, MY SISTERS

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in
special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.