Walking Through Shadows

Warning: This is a rather long post that describes what happened to Joy and how she developed her feeding disorder.  Please feel free to read on if you're interested...

Early Signs

Everyone warned us about the sleepless nights (which were much harder than anticipated!) but we were definitely not prepared for the unexpected twists and turns of a baby with a feeding disorder. But who really is?

We weren't too concerned even when Joy began to vomit more frequently. After all, our pediatrician and friends said it was par for the course. We did notice that Joy took 45min to drink 4oz of breastmilk/formula.  By the time she was done, we had to change her and put her to bed again.  Very little time for anything else.  As first time parents we thought this was normal.  And then little bloody spots started appearing in her stool though Joy never complained or refused to eat.  She always overslept her feedings times and never cried for hunger even when she was much older.  But again, she never complained or cried.  

Over the holidays, Selena had a large amount of dairy. We immediately noticed streaks of blood and knew right away something was not right. We consulted several pediatric gastroenterologists (GI) and immediately switched Joy to a hypoallergenic formula, which by the way tastes completely nasty because it is basically food at it's most basic form. Things settled down a bit but then Joy started to cry more, particularly when placed in the feeding position. She started swatting the bottle away, arching her back as if she was trying to escape meal time.

A Turn for the Worse

I caught the flu in mid January and it was really bad (worst ever). I stayed in bed with a fever for the entire week. The only good thing was that I was able to watch all the episodes of Walking Dead. As I was improving, Selena got sick with a fever too so Grandma took care of Joy for a few days. By the time we were both back to normal, Joy started vomiting every meal for several days. She didn't have a fever but we could hear her stomach making all sorts of weird sounds whenever she drank. After taking a few sips, her grunts would coincide with churning sounds from her stomach. We could also smell the acid in her breath whenever she threw up. As things worsened, she'd cry, arch her back, and exhibit many of the symptoms of what we now know as food aversion. We tried giving her zantac, mylanta, and prevacid but she kept getting worse to the point where she stopped eating. We knew then that something was seriously wrong but didn't know what to do. Feeling helpless is a scary feeling for new parents.  We prayed fervently that she would get better.

Joy and her Feeding Tube

Things got worse.  She became severely dehydrated to the point where we had to bring her to the hospital. They inserted an IV and sent us home because there was nothing they could do. She continued refusing to eat and when she did, she couldn't hold it down. Our pediatrician (Dr. Weich from Children's First Pediatrics), who by the way is the best Pediatrician in the world, instructed us to either take her to Children's Hospital or Georgetown. We opted for Georgetown because our Ped GI doctor, Dr. Yulia Rekhtman, was affiliated with this hospital. They have a good reputation and some of friends were residents in their pediatric program. Unfortunately Dr. Rekhtman was on vacation and the staff had no knowledge or background about her condition. Joy arrived so dehydrated that they couldn't find a vein for the IV. They tried hands, arms, legs, feet, etc. It took them 12 attempts over 3 days to finally succeed. It was horrible to see her go through all of this.

Without an IV, the only other option to provide fluids was a nasogastric (NG) tube. At this point we had no choice.  They inserted the feeding tube through her nose and down into her stomach that night.  Painful to watch but the nightmare wasn't over.  Because of a new hospital policy that required a specific attending to read the x-ray (to confirm placement of the tube in her stomach), the staff did not start giving Joy fluids until the next day.  We were furious and complained to all the nurses and eventually the patient advocate.  Our child arrived severely dehydrated and because their attending did not read the X-ray, Joy was not getting the help she needed.

Joy in the Hospital

Joy Continued to Smile Despite Everything

 

 

 

Little Progress 

Joy with her NG tube

The doctors diagnosed Joy with post-traumatic feeding disorder, failure-to-thrive (FTT), and gastroesophageal reflux disease (GERD).  We spent about 2 weeks in the hospital with little progress to show for. Using the feeding tube, they were dripping in formula at a very slow rate yet she still couldn't handle it. She continued to vomit and cry and things did not seem to get any better.

But we continued to press on.  We received a lot of emails/messages from our friends and family, and received medical advice from some of our friends, including Steve Min and Eugene Chung. We really appreciated all the people who went out of their way to visit, bring food and pray with us.  It meant a lot to us.

After two weeks in the hospital, I felt that it was time to go home.  I convinced everyone, though Selena did resist a bit. I knew in my gut that we needed to get out of the hospital.  Once you're admitted, you can't change anything without a doctor's order (not even offer water). Very frustrating. Throughout our stay, I struggled with a lot of questions.  How did we get to this point? Did we do something wrong as parents? What did Joy do to deserve this?  I woke up each morning in disbelief.

The Long Journey Home

When we returned home, we lived like we were always walking on eggshells.  Joy continued to vomit all her meals and we were left wondering what happened to our little girl. We had to hold Joy upright during her tube feeding (1 hour long, 6 times a day) because we were worried that she would vomit. Sometimes she would vomit in the middle of the feeding while other times she would vomit 10-15 after she was done. There were even times when she would vomit right before her next feeding. The trigger would be a cough, sneeze, laugh, or yawn. Our guess was that whenever the NG tube moved, it was trigger her gag reflex and cause her to vomit.  We were literally changing our clothes throughout the day and became handcuffed to the house.

There were days where we weren't sure if we could make it. Thankfully we have a great community of friends and an amazing church (Ambassador Bible Church) who supported us through visits, prayers, meals, etc.  Steve Min became our "on call" GI doctor because we had so many questions about what to do with Joy.  Our pediatrician also called us several times a week, and even pushed hard to have Joy seen by other gastroenterologists for 2nd and 3rd opinions. We just had to accept the fact that we now have a special needs child and that life was going to change dramatically.

Hospital Infection Strikes Again

A few weeks after leaving the hospital, Joy started having diarrhea. Ok, we all get the runs once in a while but for a whole week?? She tested positive for a nasty bacteria called Clostridium difficile, also known as C. Diff. The doctors put Joy on special antibiotics that, you guessed it, makes people vomit.

Joy was then vomiting 4-5x/day AND had diarrhea 7-8x/day. She projectile pooped on me when I tried changing her diaper.  It was like being hit with a squirt gun!  After a few days, she looked lethargic and dead tired, and would even fall asleep during playtime.

We eventually had to readmit her to the hospital again for dehydration. At least this time they were able to insert the IV on the first try.

Tests, Test and More Tests!

The doctors ran all sorts of test on Joy. They tested for pyloric stenosis, ran upper GI studies, endoscopy with anesthesia, and a modified barium swallow study. To our surprise, all the results came back negative. Joy must have felt like a lab rat after they were all done with her. Once again, we had more questions than answers.

Endoscopy