Caution: Wet Floor

So, this week, Stanton and I scheduled a play-date with friends at Chick-fil-a. My friend, Joy, and her two little girls pulled into the parking lot as we did. The kids were all so excited to see one another and giggled all the way into Chick-fil-a. The place was packed! I told Joy I’d take the kids and find a table while she got in line. Of course the only open table was smack in the middle of the restaurant, but I grabbed it and got the girls situated. I found a high chair for Stanton, dragged it over to our table and plopped him down. Joy came over with her girl’s food as I pulled out Stanton’s only safe food from home, corn kernels. As I pulled the lid off the container of corn, Stanton went into a full blown vomiting session. 

Projectile is the only word in the English language that comes close to describing this style of vomiting…..but a picture of a long-dormant volcano suddenly coming to life always jumps to my mind. My dear, sweet friend, Joy, handed me about five napkins and wandered off for more. I attempted to keep Stanton calm as those five napkins soaked up roughly 10% of the damage. He cried loudly and I began to notice we we drawing a large audience. I also tried to keep the girls calm as they begin asking questions. “Is Baby Stanton okay?”… “Is Baby Stanton sick?”…”Does Baby Stanton have a tummy-ache?”… “will I get the tummy-ache too?”

One of the tables right next to ours chimed in: “Oh I remember my kids doing that in restaurants. It’s hard being the Mom that just exposed everyone to the stomach bug.”


Okay – I completely realize that now is not the most opportune time for a public service announcement….but I could hardly contain myself.

I tried to smile and nod but I felt tears brimming. My hands were shaking as I stood Stanton up in the high chair and undressed him as he cried. I wanted to share our story. I wanted to define reflux. I wanted to describe eosinophilic esophagitis. I wanted those around us to know they had not just been exposed to something contagious. Instead I stood, letting the world fade away for a brief moment, and held Stanton tight to my heart in only his diaper; rocking, humming, breathing, pulling us back together. I opened my eyes only to find our table now marked by bright yellow wet floor warning signs…just in case anyone in Chick-fil-a missed our first act.



This week I learned that advocating for Stanton’s health will only be half our battle.

Welcome Sandman

“Oh Mister Sandman, bring me a dream…”

 

Two weeks after putting Stanton on the research medication from the University of MO, a long overdue and much anticipated visitor arrived on our doorstep – the Sandman! Sleep is an amazing experience that we have craved for almost 2 years. Stanton’s nights have been so dire that my husband and I take turns sleeping on the twin mattress on the floor in his room. Most nights, we’re lucky to get 2 hours of sleep at a time. Out of all the things we’ve endured these past 24 months, I’m most impressed with the way we’ve survived without sleep.  Stanton’s frequent expulsions from both ends didn’t really change much, but somehow the arrival of the Sandman brought a new found hope back into our home.

History 301: When to switch doctors

Last fall, after learning Stanton had pretty moderate damage in his esophagus, our GI changed Stanton’s medications. He had always taken some variation of Prevacid, but the GI suggested and prescribed Nexium in the morning, Carafate 3 times a day and Axid at night. We had a really tight schedule of timing the medication and convincing Stanton to take it. The GI also started Stanton on a prescription milk called Vital Jr. This is a high calorie, lactose free, creamy canned milk. All of the milk and medication changes for Stanton happened at once and were quickly accompanied by severe diarrhea throughout the day. So we spent the fall and winter not only dealing with constant vomit, but also 9-10 blowout diapers a day. I documented everything so I could prove to the GI at our November visit that we still didn’t have the right combination. The November visit just brought forth an increased dosage of all the medications. This was a big “ah ha” moment for me – I knew I needed to find a doctor who would partner with me. I felt as though this GI wasn’t listening to me, validating my concerns, nor looking for an answer. I knew there was more going on, but couldn’t prove anything. Ugh…. We endured the Thanksgiving and Christmas seasons with bouts of upper respiratory infections, antibiotics, steroids, breathing treatments and the 3 reflux medications.


I spent the holiday season and rang in 2010 becoming an expert on all things reflux. I switched pediatricians after finding a clinic more “in the know” with special needs issues, got to know our newly referred out-of-state Developmental Pediatrician and started genetic testing. We spent lots of time at visits, testing, etc. As the new year began, something inside of me changed. I made the conscience decision to fight for Stanton’s health and make 2010 the year of answers. Our family switched from survival mode to fighting mode!

I soon discovered that the leading reflux research for babies and toddlers is being conducted at the University of MO at a clinic called MARCI-KIDS. I went to their website and found lots of medical information. I printed out roughly 36 pages of research and armed myself with knowledge and possibilities for Stanton’s January GI appointment. The GI thumbed through it while his gaze remained on me….stating he didn’t agree with new research or test methods. He reminded me that all of the invasive testing revealed no signs of acid. I reminded him that there is damage in Stanton’s esophagus and the vomiting is still occurring and now we have the added benefit of constant diarrhea. I told him he had not gotten to the bottom of it. The GI handed me a referral to an intensive feeding therapy program and left the room.

In January Stanton got really sick AGAIN with pneumonia and was completely lethargic. The pediatrician really wanted us to go to the hospital. Stanton’s respiratory rate was lingering at 40% which is the admitting number. Two breathing treatments in the doctor’s office increased his rate to 55% which gave me the green light to take Stanton home. We spent the next 48 hours on standby, giving Stanton a breathing treatment every 2 hours and talking to the doctor every hour. Once we cleared the critical point, the pediatrician asked what our GI’s plan for Stanton involved. I began to cry and explained my frustration. I then shared with him the research from the University of MO and he replied with “Well what are we waiting for?” Our pediatrician agreed that it was worth a try so he signed off on all the research paperwork and by February 1st we began giving Stanton the research medication.

Going on a Bike Ride

For those of you parenting a child who pukes anytime, anywhere....you know how incredible the moment captured in this photo is! It is extremely difficult to just go out and play, much less go on a bike ride. However, our new Wee Ride bike seat is a great new toy!!!! I love that it sits on the front of the bike!

The Wee Ride website advertises that having the child sit in front of you helps with balance and control, gives the child a more interesting view, allows for a more enjoyable riding experience, enhances safety because the adult’s arms surround the child, etc., etc. Well – My two selling points plug for this seat would be as follows:
1. If your child decides to puke while riding, it won’t end up on you!
2. Finally a way to lose that baby weight (little ones who randomly throw-up aren’t welcome in a gym daycare)

P.S. - We’ve been riding now for about 3 weeks and Stanton has yet to puke while on the bike. He LOVES it and so do I.

History Lesson 201: Invasive Testing Begins

After carefully reviewing Stanton’s history and severe feeding issues, the GI in Mobile wanted to be sure he covered every possible issue. In order to really diagnose, investigate and rule out anything happening inside Stanton’s body, the GI ordered lots of tests and procedures.

We first went to the outpatient imaging center at the University of South Alabama in Mobile for an Upper GI and Small Bowel Follow Through. I thought I had prepared myself for this test by reading all I could find on the internet…but my mommy emotions kicked in, which I didn’t account for. Just thinking back to this day is painful for me! Stanton was completely traumatized and terrified as techs tried to force him to drink barium sulfate. Our whole issue is feeding, so why they thought he was going to drink it is beyond me?!! He was then papoosed to a straight board and had a feeding tube crammed up his nose and down his throat with no pain medication administered. They force fed him the barium for 20 minutes and then he endured 20 more minutes of x-rays! Of course Stanton was so upset that he was completely soaked with sweat, covered in poop and aspirated while crying and gagging and ended up with pneumonia. AWFUL DAY. The small bowel follow through showed a section of Stanton’s lower bowels not filling with food, so we had to go back the very next day for an ultra-sound and more x-rays.

We traveled back to the clinic the following week for a swallow study. Again – this test required drinking some barium. We couldn’t get it down him at all! Stanton just flat out refused to cooperate, especially after his PTS (Post Traumatic Stress) kicked into high gear. Why someone couldn’t just combine the two tests into one awful day, rather than two, is something that makes a lot of sense to me….but has obviously never crossed the minds of the powers that be at the hospital.

The next set of testing required Stanton to be put to sleep. I am no longer afraid of doctors putting my child to sleep and will always be extremely grateful. It really is, and I know this may sound crazy, much more relaxing for John and myself to know that Stanton is asleep and unaware of what’s happening. While asleep, Stanton had an upper endoscopy, several internal biopsies taken, a 24-hour pH-probe inserted, a fluoroscope, and a colonoscopy. The specialists basically examined every part of his gastro system possible. The x-ray taken for the pH-probe placement also showed that Stanton still had pneumonia. All the nurses and doctors were nervous because they had performed surgery and all these tests on a sick, lung-compromised baby. So they gave Stanton lots of oxygen treatments and antibiotics. We spent the next 24 hours at the Ronald McDonald House keeping Stanton highly entertained so he wouldn’t pull the ph-probe out of his nose. The following morning we went back to the hospital and had it removed.

After two weeks of waiting, we learned that the testing showed damage in the esophagus. “That’s all?” I asked the GI. The GI explained that although he thought Stanton’s testing would reveal eosinophilic esophagitis. It didn’t prove concretely anything. Not even severe reflux episodes. My heart sank with this news. Back to the drawing board. Knowing there is something wrong with your child and not finding the answers is a tough moment. Realizing you’ve tortured your child and yourself, not to mention your finances, and still have no answers is indescribable.

History Lesson 101

The decision to start blogging was one I contemplated for a while. I really wasn’t sure I would have the time to commit to writing and posting. However, I knew it would be the easiest way for me to keep everyone aware and up to speed with Stanton. I see now that I started blogging about our present situation and many of you are just joining our journey. I thought it might be helpful to give you a little background.


Around his tenth day on earth, Stanton suddenly vomited. I was holding him up on my shoulder while attempting to put pumped milk in the freezer. As wet goo dripped down my back, legs and into my shoes I turned to reach for the paper towels, only to realize that paper towels weren’t going to do the trick. My kitchen looked like a scene from the movie Poltergeist. How could something so sweet and tiny create this? Little did we know, this was only the beginning…

Stanton cried and threw up a lot. Well, okay, all day and night. So much so, it was impossible to get out of the house. I think I survived those early days living in a variety of smelly shirts. When I complained to the pediatrician that he was a really difficult baby and was throwing up all the time, the doctor said, “Well all babies throw up”. “I know, I know,” I said, but he seems to be in pain. Of course this just prompted the conversation about what are you eating that could be irritating to the baby? Have you tried formula?

PICC line – I developed an awful infection that was unresponsive to oral antibiotics and had to get a PICC line in order to receive daily IV therapy. This meant Stanton could no longer have my milk. The whole breastfeeding thing wasn’t going well anyway, but I wasn’t ready to stop trying! The PICC line forced me to open the black bag full of free formula samples the hospital sent home with us. Similac sure smells sour when it’s regurgitated. The formula game was one we were terrible at! We tried every variety of Similac, Enfamil and Parent’s Choice. Our pediatrician was very patient as I called every two weeks stating the formula wasn’t working. Stanton is still screaming and vomiting.

Week 10 – Finally! A prescription for reflux (GER). I feel like now we’re getting somewhere. Stanton began taking 7.5 mg of Prevacid each night and we switched him to a formula, Alimentum. Things did seem better. Stanton had longer moments of happy play, but the up all night screaming and constant vomiting didn’t really change. One day I counted 32 pukes. That was a day we didn’t leave the house!

The weeks and months following all begin to run together like we’re living one extra long day. Things don’t improve and once it’s time to introduce solids, things seem worse. Stanton just won’t eat and refuses 95% of meal time attempts. Trying formulas, adding rice cereal to the bottle, increasing medication, starting early intervention….no improvement. This time is also complicated by constant sinus and ear infections, strabismus surgery (eyes), emergency hernia surgery and bilateral ear tube placement. It was so hard to tell if he was crying about his reflux, ear aches or a hernia we didn’t know was there. It was obvious he was crying in pain and we weren’t able to “fix it.”

I insisted on a referral to a specialist at Stanton’s one year appointment. The pediatrician finally agreed and arranged for us to a Gastroenterologist (GI) at the University of South Alabama Children’s Hospital in Mobile, AL. It took 3 months to get an appointment, but once we saw the GI he seemed very thorough. He reminded us of the symptoms of GERD of which Stanton matched ALL:

*frequent regurgitation or vomiting, especially after meals
*choking or wheezing, if the contents of the reflux get into the windpipe and lungs
*wet burps or wet hiccups
*spitting up that continues beyond the first year of life (when it typically stops for most babies)
*irritability or inconsolable crying after eating
*refusal to eat, at all or in limited amounts
*failure to gain weight

The GI also went over some possible complications from GERD:

*breathing problems (if the stomach contents enter the trachea, lungs, or nose)
*redness and irritation in the esophagus, a condition called esophagitis
*bleeding in the esophagus
*scar tissue in the esophagus, which can make it difficult to swallow

The GI explained that any of these complications make eating painful, and interfere with proper nutrition. This could explain why Stanton is not eating. We left that appointment with a prescription for a new high calorie milk called Vital Jr., scheduled invasive procedures and hope! For the first time we felt like we were going to get to the bottom of this and find a treatment for Stanton.

Raisins are a No Go

Oh Bother! Food just isn’t very fun once it finds its way into Stanton’s body! My Mom offered Stanton raisins on Monday. He wasn’t really too excited or interested, but my Mom sent the opened box home with us. I’ve had the box out at his eye level, so if he decided he might want to try one – he could. Today, that enticing little red raisin box caught his eye. Stanton ate 14 raisins throughout the morning. The blow-out diapers began after raisin number 5. He continued to have diaper issues all day. Then tonight, the grouchy, clingy, crying began and was quickly followed by vomiting.


Please don’t tell me that “now you can mark that off your list”. Or that I’m “one step closer to finding something he can eat.” Coming back to the drawing board isn’t really a good place to be. It’s as if we’re traveling over-seas with no translator or map and have lost our passports…confusing, exhausting and frustrating. I just pray that those sweet little raisins move on out soon. I don’t want them to get comfortable and decide to stick around and invite pneumonia over for a party.

Our ENT Rocks

We just returned from our post-scope follow up visit with our new ENT at Ochsner’s in New Orleans. In April, Stanton had a bronchoscopy in combination with our last esophageal and upper GI scope. Why did we end up needing a bronchoscopy? In January, Stanton had tons of constant congestion and 2 episodes of pneumonia. So, in February, after battling our ex-ENT to please just look at Stanton’ s throat, our pediatrician ordered a soft tissue x-ray of his face and neck. We were thinking his adenoids might be inflamed and/or large and may need to come out, however, the x-ray showed no issues with his adenoids or tonsils. Instead, we were alarmed to find that Stanton displayed a severe narrowing of his airway. Once our pediatrician saw how small Stanton’s airway was, we were sent directly to an ENT/airway specialist at Ochsner’s and the ENT, in turn, scheduled this bronchoscopy. This procedure allows the ENT to look at the airway system. Through the bronchoscope, they evaluated Stanton’s respiratory system, including his voice box, wind pipe, and airways for any abnormality or infection.

We learned they day of the scopes that his airway had returned to normal size and no abnormalities or infections were found. This was great news! But – I had to wonder, what does this mean?

The visit was a really good one! The ENT completely congratulated us for being aggressive and starting the elemental diet before the scope (switching Stanton to the special new formula, Elecare). He credits this with Stanton’s airway healing. No food = no reaction.

I brought my gag/vomit/poop/food journal along to the visit so I could show the doctor our one attempt at introducing food/episode since the clear scope. We introduced eggs and that was a complete nightmare! Stanton, of course, loved the scrambled egg and ate almost half of the egg! John and I were amazed, as we watched a child who shows no interest in food or eating, actually seem to enjoy the egg. Well, two hours after eating the delicious eggs, the screaming, retching, gagging began and was quickly followed by uncontrollable vomiting. Poor Stanton vomited profusely for 3 full days and nights. He aspirated while vomiting and we ended up with fluid in the lungs, swollen throat, etc., etc. Not a fun way to spend the week – steroids, breathing treatments, etc. He ended up with this rash on his face, which our pediatrician said was from vomiting so much.

The ENT said the egg episode clearly verifies Stanton’s diagnosis of Eosinophilic Esophagitis (EE) and we should wait 6 weeks before introducing another food. Ugh. The waiting is the worst! Then again, the trauma that spews after trying food is pretty awful too.

The ENT said he’s amazed that Stanton is maintaining his weight and looks so healthy! We hear that with every new doctor we meet. They see his extensive records and notes and surgeries and expect to see a pale, lethargic child. I suppose having severe EE, feeding aversions and swallowing issues are all serious issues that could indeed produce a unhealthy looking little one. We work so hard at keeping Stanton healthy. This is no easy task….but we’ve made it our mission.

Juggling Act

With only a few minutes to write today, I thought I'd share our juggling act, otherwise known as a schedule. No wonder Moms are sometimes referred to as CEO of the household!

5:30 am wake up, get ready, load car, make bottles
6:30 am wake up Stanton
6:50 am get Stanton in car and drive to New Orleans
8:15 am arrive in New Orleans to sit in traffic, listen to a 3rd Baby Einstien movie
8:45 am arrive at Ochsner's
9:00 am see Dr. Guirisco, ENT, airway specialist for post-op follow up - reviewed detailed food/vomit log, confirmed EE diagnosis and treatment options
10:00 am back in car
10:30 am park and walk to Aquarium, which is closed
10:45 am walk to Bug Museum, which is also closed
11:00 am walk into high end shopping mall and let Stanton splash in the water fountain (I promised water and fish - so this somehow satisfied him)
11:30 am back in car
1:30 pm home 
2:00 pm Stanton finally gives in and takes a nap
2:15 pm call insurance to verify payment for visit
2:25 pm call occupational threrapist to schedule June visits
2:30 pm post this blog
3:00 - 7:30 pm off to teach music

No wonder I'm worn out!

The Woman in the Mirror

The Woman in the Mirror...... By Cheryl Veenstra (February, 2001)

I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong? Around some corner on the road of life.......she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly uncertain......gray, shadowy images of the vague and scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She'd had hopes and dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.

The same pity she had once felt as she watched a mother hold her 'special child' close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path........It was okay. She and her child could survive, even thrive! It was not as grueling and unforgiving a road as she had imagined. The fog, confusion, despair and fear were being slowly replaced by peace, acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in. She will fight for, live for and die for her child. These special children transform those around them into different people. Stronger people. Dare I say it......deeper people. Long gone are the days when all they had to worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent trying to make their 'family life' as normal and happy as possible.

A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she's been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is a privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl's slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?

Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I'm curious to see how she will continue to change and grow. She's not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!

Kindermusik

Stanton and I go to Kindermusik every Tuesday morning.  I teach the class and he just gets to come along and participate.  Over the years I've had the honor of watching hundreds of children grow and thrive in Kindermusik classes, however, now being a parent of a child in class has given me a whole new perspective. It also reminds me of why I love Kindermusik.  Every ability and child is loved and welcomed.  Every child and grown-up can participate at their own level.  Some watch, some run, some cry and others sing and somehow it all just works!  Music is magic!

Stanton LOVES Kindermusik!  When I tell him it's time to go to Kindermusik, he begins to tap his knees and walks straight to the front door.  It's been so fun for me to have a safe place to take him.  I watch him learn and grow and play with others in class.  The routine is one he now anticipates and thrives in.

 Thank you families in our Tuesday class for sharing such a fun morning together and for loving Stanton.  We had a great time today! 

(To hear this video, you'll want to pause the music player at the bottom of my blog)

Letter to Stanton

Dear Stanton,

Mommy and Daddy so want you to feel better so that you can be a happy little world explorer. I know you must get frustrated with our limited ability to understand your thoughts and babble.  We are trying and thank you for your patience.  We can't wait for you to master the English vocabulary so you can tell us what hurts, what doesn't, what helps your body and what you might like to try. 

Oh, we long for the day that all of this is a distant memory...one you won't remember at all, except through pictures and stories...one that sounds like it must have been someone else's life.  And yet, at the same time, we realize these experiences with you have been a gift.  How else we could truly empathize with other families in the hospital and know how to fill those simple needs that others may be unaware of? How else could we know that God's plan is perfect? How else could we experience the journey without knowing the destination? How else could we have spent everyday holding you, memorizing all of you while smelling your sweet baby skin?  Through your illness - we have become stronger than we ever thought possible.  We have to be. We have been given the charge of protecting you and growing you into an amazing person for the world.

Mommy and Daddy and you are a team!

Amino Acid Formula

We received great news in the form of a letter from our insurance company!  Stanton's special formula has been approved and will be covered!  He drinks an amino acid based formula called Elecare.  It is quite expensive and has definately changed our household budget.  So - today we are super excited!

If you're curious or would like more information about this formula for children ages 1 - 12, please visit http://www.elecare.com/.  Great website with lots of user friendly information.

 

Getting Started

Well, I've finally made the decision to start blogging about out life! So many have said, "oh, you should write that down," .... so here I go!

I must first introduce the culprit behind Our Carpet Stains. This is our little guy, Stanton, on a healthy day (to hear this video, you'll need to pause the music player at the bottom of my blog):

Good days like this one sure keep us hopeful on the not so good days!
I hope you enjoy the ride as I attempt to share pieces of our life with you,
Ginger