She came home with her from the hospital early in the afternoon on December 31, 2003.  By evening Ryenne was screaming, not eating and vomiting. How does a newborn vomit profusely and not even be eating? It just does not seem possible that a tiny baby of 6lbs can projectile vomit like this at 2 days old. Obviously something is really wrong here. Really.  

At 8pm, she calls her mom. Her mom has barely spoken to her since she found out she was pregnant, but she picks up on the 2nd ring. ¨Hello?, she says. Fighting back tears, exhausted and stress in her voice, she says,”Mom, something is wrong. She has done nothing but scream and cry. She won´t eat, she just throws up nearly across the room. She is stiff as a board, and so tired but cannot settle to sleep. I am taking her to the E.R.¨  Her mom tells her to pick her up on the way and she sighs a bit of relief and and fear at the same time.

This is not her first child. It is actually her 2nd child. Her oldest, a girl also, is 10 years old. As a an infant and toddler she was super easy. Happy, fun, easy going, early developer, all of the things a new mom thinks is ¨right¨.  At 22, when her sister was born, she was naive, single, barely employed full time, but extremely driven to not be a mess, like her mom. She put herself through college, got her Bachelors in Accounting. Worked her way up over the last 10 years and bought them a home, a couple of nice cars over the years, they vacationed, they were settled and doing very well. This pregnancy was completely unexpected. In fact, the she had broken up with the father before she even knew she was pregnant. He was kind, fun, and employed. Did all of the things that all the other men before had not done. Be nice.  That was it. When that wore off and the reality of lack of things in common came in, they broke up.  She found out she was pregnant 6 weeks later.  They tried to work it out, but she was independent, gainfully employed, used to doing babies alone and just did not need the hassle of what he could bring to the stressful situation. They kept in touch and he was at her c-section to meet his newborn, and figured they would work out the rest later.

At the hospital, the ER doctor was asking a lot of questions, but treating her like she was one of ¨those¨ moms.  The crazy kind that worries about every sneeze, cough and hiccup.  She is definitely not that mom. She is strict, disciplined and scheduled, but loves babies and is completely unaffected by every days symptoms of living.  She finds it annoying that he is not listening to her when she tells him how odd the baby is responding to her experienced mom skills.

She tells him that at birth she was very tense, never settled into her arms like a squishy newborn should. Did not take a bottle and fall asleep. She kept her body stiff and her legs straight and tight, and stayed that way. In the hospital, she did notice this, but just chalked it up to her being a newborn. She had no way of knowing the path of the next 18 years. No way. 

The doctor sent her home with the baby. Changed her formula from milk to soy. Basically told her to give her time to be alive and adjust. She left and did not feel better. She knew that was not the reason but ok. She would try it his way.

She dropped her mom back off at her house, drove home and realized she spent the new year in the ER. Happy 2004.

Over the next few weeks, it was exactly the same as that day. Baby not sleeping for more than 20 minutes at a time. Not eating much, vomiting a lot and extremely uncomfortable.  She called her pediatrician. He was her oldest daughter´s for the past 10 years. They were well acquainted. He knew she was not an over reactor so when she called his office crying to his nurse, they got her in that day.  He spent a good amount of time listening to her. All of her experiences for the past 2 weeks, all of the vomiting, no sleep, nuances of her newborn that just was not sitting right.  He did not interrupt her or speak down to her. When she stopped speaking, he simply said that she has reflux and prescribed her some medication. Give it 2 weeks, it should get much better over the next 10-14 days.  When that did not happen, she went back. He seemed unphased and prescribed the next medication. Another 10-14 day wait to see if there was improvement. Again, no change. At the one month mark, in desperation, she begged him to do something. Again, he changed medications and talked her off the ledge. She is a newborn, trying to acclimate, let her find her way, be patient, try to rest when she does, we can change her formula next time and see if that helps. It did not.

As the weeks went on, she started noticing other things as well. Ryenne would vomit and then turn blue 3-4 times a week. She has a terrible cough, she still did not drink more than 1-2 oz from her bottle ever and still did not sleep or relax her body. Back to the doctor they would go. Over and over. By the time she was 4 months old, sleep deprivation had turned into the norm, and she was starting to reach out to specialists.  There was a hemangeomia on her labia, on her chest, she had cloudy eyes, she had been on 4 different formulas and 7 different medications. Nothing changed.

When the doctor could not get her cough to go away with breathing treatments and antibiotics, he sent her to a pulmonologist. 

Aspiration pneumonia! She has had aspiration pneumonia for weeks! All of that vomiting and turning blue was from her inhaling vomit! He tested her for CF, found her lungs to be scarred and did a lung biopsy. CF and biopsy negative. She then started breathing treatments that lasted the next 2.5 years.  Still no improvement with formula, vomiting, sleeping, any of it.  What is going on? What could possibly be going on that none of these doctors can pinpoint as the issue for the past 4 months?! 

She started calling every specialist she could think made any connections. Gastroenterologist, check, Pediatric Dermatology, check, Pediatric Ophthalmology, check. Results: Medication change for stomach issues, surgery scheduled with a vascular surgeon for the hemangioma and slight outward turning of the left eye, but would resolve as she got a bit older, Say, 6-8 weeks.

After the vascular surgery was done, and recovery went so quickly and easily, there was a bit of hope that whatever was happening, might get better. Her wandering eye, resolved, the medication change for her stomach did not fix anything. Time for another new doctor. Ryenne is now 1 and still barely eats. Is struggling to maintain growing. Failure to thrive they told her. So many doctors, so much money, so much medication and now failure to thrive!?

The new gastroenterologist scheduled an upper GI immediately. She confirmed burned vocal chords from vomiting, she found extremely large tonsils, an irritated stomach, sleep apnea but NO REFLUX! 

NO reflux? No wonder none of the medication worked. The mystery illness continued, but along the journey, there were those extremely large tonsils. She called her ENT on the way home from the upper GI and told him the doctor said they were ¨very acute¨.  He said to swing by on the way home, so they did. He examined her and said they were so bad, they needed to come out the next day. Maybe this explained the lack of eating. Chewing a bite of banana and then storing it in her cheek, not swallowing it. French fries, same thing. mashed potatoes, same thing, chicken nuggets, same thing. Green beans, mac and cheese, you name it, she stored it without swallowing. She was still being treated for numerous lung infections, so no connections were made between food issues and aspiration pneumonia over and over, but those tonsils were a solid trail to follow. Next day, at nearly 2 years old, Ryenne had her tonsils removed. The doctor said they grade them on a scale from 1-4. Hers were a 5. Sleep apnea resolved immediately.  The journey continued. Ryenne remained in the bottom 25% of growth for both height and weight over the next year, but the vomiting slowed down, the crying and not sleeping slowed down. Finally some noticeable progress. Then one day in early January of 2008, she noticed when Ryenne did get tired, her left eye would wander.  More and more over a few weeks, it really started to turn out again. By now, she had lost her job. She could not leave the baby with a sitter or daycare. They would not be able to handle her medications and high needs babies are very susceptible to abuse, especially criers. With no insurance, she made an appointment at Walmart to see the eye doctor.  He did his exam and in the middle he suddenly stopped, then excused himself as he said, ¨something is really wrong¨.  When he returned with a 4¨ thick medical book and flipped through it as fast as he could, she started to get scared. He looked scared. Tears welled up in her eyes as she held her breath and waiting. He said, ¨I think she has glaucoma! Her corneas are shattered like a broken windshield.¨  Her mind raced. She started to cry. She did not understand how a small child could possibly have an elderly persons disease.  She had no idea that she had also finally gotten her answer to the mysterious illnesses. All of the pain, crying, sleeplessness, not eating, vomiting, came from this disease. Her eye pressures were so high, she was in so much pain, for so long, she was sick from it. The mystery was solved by the Walmart eye doctor. Over the next 13 years, she would take her baby girl to eye doctors as far away as Philadelphia.  Over and over Ryenne endured over 30 eye surgeries. 3 valves in her left eye, a cornea transplant, and testing and laser procedures over and and over. Today, she is 18. She plays softball, is being recruited by colleges, planning on majoring in nursing, and has a very tight bond with her mom. Mystery medical illnesses take their toll on the family. Medical bills, anxiety, surgery after surgery. She knew the day she brought her home something was wrong. Follow your leads.  Do not give up. Trust yourself.