Hospitalized

Wednesday morning, Mr. Happy didn’t eat his usual way at 3:00 and 5:00 a.m.  He only nibbled.  At 6:15 a.m. he woke up screaming and wouldn’t stop.  At 7:00 a.m., I took him to the living room and found he would only calm down in a few select upright positions.  He refused to nurse.  I changed his diaper and it was poopy, but it was the first poopy diaper he had in the previous 12 hours.

This is very unusual – he always nurses, and he poops a lot. All morning long he was listless and lethargic.  He looked glassy-eyed and didn’t cry.  He just laid there and moaned.  He was making spit bubbles at his mouth, and they had streaks of brown in them. I called his pediatrician’s office, and while I waited for a call back I looked up his symptoms online.  The only thing I could find that fit most of the symptoms was Intussusception, an intestinal blockage.

The nurse called me back and arranged for him to come to the office at 1:15 p.m.  I packed for the hospital, just in case, and we went to the doctor’s office. The nurse practitioner examined Mr. Happy and thought I might be right about Intussusception, but said he didn’t present with classic symptoms and wanted Dr. A to look at him.  Dr. A came over from the other office and examined him.  She disagreed with the diagnosis of Intussusception and said it sounded – to her – like Reflux and Gastritis. To be safe, she ordered an ultrasound of his tummy, which would confirm or deny Intussusception.

We left to have it done at the hospital that fouled up Mr. Charms’ delivery (hiss, boo). By the time they had registered him and completed the ultrasound, it was 4:30 p.m.  We stopped by the pediatrician’s office to show the latest unusual symptom: his last poopy diaper was pitch black.  Usually, that’s a sign of blood in the intestines.  They didn’t seem too concerned.

They had said that 2-3 hours after the test the nurse practitioner would call with the results, so we decided to hang around town rather than going straight home.  We went to have dinner at Chipotle, then picked up a few things at Target, and realized 3 hours had passed with no contact. I called the after hours number and left a message, and thirty minutes later got a call back.  She said that the hospital had performed the ultrasound, but then sent the pictures over to another hospital to be read.  However, she had tried and could not get anyone to answer the phone there.

She apologized, and said she would try calling Dr. A to see if she knew any other ways to contact the radiologist that was reading the ultrasound. Another half hour later, she called back.  Dr. A didn’t have any other contact options, but she said that they usually call her with results if they indicate a surgical procedure may be necessary, even after hours.  Since they hadn’t contacted her, she recommended that we just go on home.  “No news is good news”, she said.

The Geek and I were so annoyed by this further evidence of incompetence by the hospital that screwed up Mr. Charm’s delivery that we just started driving home on auto-pilot. About halfway home, I started to have a sinking feeling in my tummy.  Sure, we’d had an ultrasound.  Sure, Dr. A gave her diagnosis.  Despite that, my Mommy gut was feeling off-kilter.

Mr. Happy was STILL not feeling well.  He spent most of the day sleeping, not crying, looking in pain, and had hardly nursed at all.  Something wasn’t right, and reflux and gastritis just didn’t sound ‘right’ to me.  I couldn’t bear the idea of waiting until the morning to find out more information.  If it was something serious, it could be dangerous to wait.

I tried to get the Geek on the phone, but since he was just hitting the cell phone dead spot he said we would talk about it when we got home.  We did, and initially we decided I would take Mr. Happy to the ER and the Geek would stay home with Mr. Charm.

I stopped long enough to pump (Mr. Happy wasn’t nursing and I didn’t want my supply to slow down), and while doing so, the Geek held him.  Halfway through pumping, he came out and said he wanted to go to the ER with me.  I asked him why and he said that it was partly because he knew I wanted him to, and partly because he was really starting to worry about Mr. Happy’s breathing.

So the Geek took Mr. Charm down to his mom’s house, and we drove off to the hospital.

We arrived at the ER entrance and the admitting nurse took us back.  Within three minutes of walking through the door I was sitting on a gurney, holding Mr. Happy, being wheeled into the ER.

The nurse called out over the ER PA “Level 1 patient, room 13″, and when I asked what the levels were, he replied that Level 1 is the most serious. That’s when we got scared, because as he was answering us we could see nurses and doctors clearing the hallways for us.  We were wheeled into room 13 and there were at least 8 people in there dancing that controlled frenzy of work that highly trained people perform when dealing with an urgent situation.

Mr. Happy was stripped to his diaper, put on oxygen, had blood drawn, examined, poked, prodded, and who knows what else, while the Geek and I just stood back and tried to stay out of the way.

Mr. Happy doesn’t care for pacifiers, but he has a strong suck reflex. The only thing we could do was give him our fingers to suck on, but because of germs and his health we had to wear gloves to do so. This was while he was being examined in the emergency room.

Within about ten minutes, Mr. Happy was finally screaming, and that seemed to reassure the ER personnel.  The room cleared out to only 3 people working on him.

He was covered in wires and tubes almost immediately. Overwhelming, actually.

Finally, he screamed and yelled, which was a great comfort after the moaning and whimpering he had done all day. Everyone relaxed, and we put one of his handmade baby blankets on him for warmth and for comfort.

By the time an hour had passed, his chest had been X-rayed and he had been taken for a CT Scan.  They took almost 200 pictures of his little body to see almost everything internal.

Getting his CT Scan. The lady on the right was very sweet in showing me pictures and explaining what she was seeing. The nurse in the vest had to stay and basically get a CT Scan herself so she could hold Mr. Happy still for the procedure.

The diagnosis was surprising: pneumonia.  He was admitted into the hospital.

Finally sleeping in his own room in the hospital. Within minutes, nurses had woken him up for vitals and respiratory therapists had come in to start treating him.

The Geek decided that since we were being admitted, he would go home to get some decent sleep so he could pick up Mr. Charm in the morning and come back to the hospital.  He left, and Mr. Happy and I headed to our hospital room around 4:00 a.m.

(continued…)

A Tale of Two Babies

It was the best of times, it was…the best of times!  I was pregnant with my first, long-awaited, child.  Any first time mother will know how terrified I felt at the prospect of being responsible for another human being, and how thrilled I was to finally become a Mother.

Mr. Charm’s due date was the 20th, and right on schedule, I began labor.  False labor.  Irritating labor.  Prodromal labor.  It started on Sunday, and I had contractions all the way through until Tuesday at my 40 week checkup appointment.

My meconium-filled water broke on the examining table, and the doctor said to get to the hospital ASAP.

My ‘plan’ to have a non-intervention, pain-med-free delivery was soon thwarted by the hospital staff.  I won’t go into details here, as it is a veritable 20 page essay all on its own, but my sons delivery brought every intervention I’ve ever heard of except the C-section.

He was born with a lovely (sarcasm) purple-black hue to his skin, and didn’t breathe or make noise for several minutes after birth.  Because of our traumatic delivery, the NICU team was waiting to evaluate him and thank goodness they were there!  He was running a fever at birth, and they whisked him away for treatment immediately.

After my son was born, I only got to hold him once for ten minutes of the first 6 hours of his life.

Then we spent a week in the NICU.  He was born a full 9 pounds, 3 ounces, but he had a fever (indicative of an infection) so he needed the full round of antibiotics, which are only administered by the NICU.

Ask me how long it took me to understand that as the reason we were in the NICU.  Go on, I dare you.

See, I was seriously drugged out for the first, oh, month or so of his life.  I’m sensitive to narcotics, and had a 4th degree tear from his entry into the world, so after a heavy-handed epidural they kept me on heavy narcotics for the pain.  I did not understand why he was in the NICU for months.

But, we were released a week after he was born, and we brought our precious bundle home.

Within days, he had such bad nasal congestion that he was choking at night, so we turned our bedroom into a sauna with the humidifier, elevated him, used decongestants, everything and anything the doctor could suggest.  Finally, he cleared up.

The Geek was able to take a full month and a half of paternity leave, so the very first time in my life that I was ever alone with a baby was when my husband went back to work and left me alone with our 5 week old.

Fun times.

The morning of the second day I was ever alone with a baby, I changed 3 bloody diapers in a row and thought I was going to lose. my. mind.  

Of course the doctor was the first person I called (as I held my baby to my chest as though he was going to die any second)!  She squeezed him in for an emergency appointment and after a quick evaluation decided he had a dairy intolerance.

“Just avoid the biggies for now,” she said.  “Milk, cheese, butter, things that say they have whey or casein in them.”  She wanted us back in two weeks to see if there was an improvement.

(Imagine me with a look of complete shock and dumbfoundedness on my face.  How on EARTH do you live without CHEESE??)

The doctor could only tell me to read the labels.  “Here’s a list of the different words that mean dairy.”

So, armed with a short list from the doctor, and complete sense of ‘oh crap’, I hit the pantry in my house like a woman possessed.

I was shocked, stunned, HORRIFIED at the number of things in my house that contained dairy.  Things that were completely unrelated to dairy in any way had ingredients that were some dairy-derivative.

I gathered up the many grocery bags full of ‘poison’ food and took them to church to donate, then hit the grocery store aisle.

Do you know that grocery shopping while reading the labels on foods while comparing them to a list of hidden dairy phrases takes about three times longer than normal? I had to break it up into three different shopping trips so I could manage it.

After eventually buying in as an owner of the local natural food co-op, I found decent substitutes for most of the foods we liked to eat.  Then I browsed the internet for ways to sub out dairy in recipes.  My recipe book got completely revamped.  (The only thing I didn’t find a good sub for was cheese.  Vegan cheese tastes like feet and smells worse!)

So I went dairy free, and so did the Geek.  No WAY was I making two different dishes each night!

I had also Googled “baby dairy intolerance” and learned that kids that were intolerant to dairy were also usually intolerant to soy, and that this condition had a name: MSPI.  Milk/Soy Protein Intolerance.  So, we went soy-free, too.  Just in case.

Two weeks went by, and while there was improvement, it wasn’t enough.  His stool still tested positive for blood.

The doctor told me to eliminate all dairy from my diet, at which time I informed her that I had taken her suggestion to the extreme, and had already eliminated all dairy from my diet.  I told her that I had read up on MSPI online and had also eliminated soy from my diet.

She looked at me and said “MSPI?  I never heard it called that.”

Hmm…

She did recommend we visit a pediatric gastroenterologist, and the nearest one was almost 4 hours away.  We set up an appointment immediately.

Six weeks later, at that appointment, she asked lots of questions and was very thorough.  In the end, she wanted him to have a RAST test run, so we drove over to the Children’s Hospital to have them draw blood.

A week and a half later, we got the results: Mr. Charm was allergic to EGGS.

Well, isn’t that just ducky!

Did I mention I love to bake?

So…back to the internet for recipes without egg, revamp my recipe collection again, go through the pantry again, donate more food again, spend more hours in the grocery store aisles.  I was a lot faster at the changeover this time around.  Practice, you know.

It took a few weeks, but suddenly Mr. Charm’s eczema cleared up, his stool looked like normal breastfed baby poop, he wasn’t as cranky, fussy and clingy, and life seemed to be doing well.

Until it wasn’t again.  Suddenly he was arching his back in pain, spitting up – which he had never done, nursing almost constantly, tightening his body in pain, coughing, gagging, and whole host of other minor, easily ignored symptoms that all led my Mommy Gut to take him back to the doctor.  Something was wrong.

Yup.  On top of everything else, he had reflux.  So, we tried Zantac.  It worked for about 2 weeks, then completely stopped being effective.  Then Prevacid.  That worked – it was $131 per month with insurance, but it worked.  So the pharmacists took pity on us and said the over the counter Prevacid was the same thing, and instructed us in how to grind it up into a liquid we could administer through a syringe.

Oh, and there was Ranitidine.  So the poor baby was getting 6 syringes full of medicine daily.  Reflux sux.

Meanwhile, he was growing fairly well.  While born at the 90th percentile in weight and height, he had dropped to the 25th percentile in weight and stayed at the 90th percentile in height.  His daddy is a tall, skinny beanpole, so we figured he was just like his daddy and thought nothing of it.

In deference to his MSPI, we delayed solid foods until 6 months old.  So on Christmas Day, he had his first ever solids: pureed sweet potatos.  Yum!

He seemed to like them okay, but within a week, they were only so-so.  We also started rice cereal, which he didn’t like, but would eat a bit of when offered.

The rice cereal was upsetting his tummy enough that I took him to the doctor.  She suggested we switch to oatmeal.

We continued working our way through solid foods: sweet potatos, pears, and bananas.  The rice cereal, oatmeal, and bananas seemed to upset his tummy and make him feel icky, so we sort of slacked off on those and pressed on with other foods.  He was doing nicely.

When he was diagnosed, the doctor said most babies outgrow MSPI by the time they’re 9 months old. So, at the end of March, Mama had her some cheese enchiladas, baby!!  And a chocolate milkshake.  And a turkey, bacon and swiss sandwich.  (Please wait while I wipe the drool off my chin…okay, better now!)  I loved it, but my baby did not. Mr. Charm had some instant diaper reactions to the addition of dairy, so back to dairy-free land we went.  Obviously he was one of the few who didn’t outgrow it by nine months.

However, at nine months, he had dropped from the 90th percentile in height to the 60th percentile, and his weight had dropped from the 25th percentile to the 5th.  Now, Mama was worried.

The doctor, on the other hand, was totally fine with it.  She said it was a normal growth curve for babies.  She took him off the Ranitidine and stamped him “Healthy”.  Off we went.

Mr. Charm was a typical baby boy.  Maybe he didn’t sleep through the night like other babies I knew of.  Maybe he still wanted to nurse more than eat at times.  Whatever!  He was crawling, cruising, babbling, displaying a-may-zing motor skills and seemed like a perfectly fine, albeit quirky, baby!

When he was a year old, I returned to work.  (Flight Attendants are allowed to take a 12 month maternity leave after the baby is born – unpaid, of course – and my 12 months were up.)  I cried almost non-stop my first assignment back at work, though, in the end, it was good for both of us.  We were getting a little bit too co-dependent.  The biggest concern about my return to work was what on earth we were to give him instead of boobie!  He couldn’t have cows milk, and I could never pump enough to get ahead.  Finally we tried Nutramigen, and that seemed to work as a supplement when I wasn’t home.

Also at one year old, we visited a pediatric allergist.  She determined he still had his egg allergy, but it wasn’t severe enough to worry about.  Just keep avoiding it, and come back in a year for retesting.

A few months after that, I got pregnant with his little brother.  The change in my milk was apparently pretty strong, because he stopped wanting to nurse as much.  Still, at 15 months old, he was nursing 5 times daily even after the drop.

When he was 18 months old, I got sick.  Being preggo, they could only give me Sudafed and Mucinex, though the Geek was given codeine.  No fair!  The drugs barely made a dent in my illness, but they apparently dried up my milk, because when I awoke from the fog that was a two and a half week long illness, I realized Mr. Charm wasn’t nursing anymore.  I couldn’t remember the last time I nursed my baby!  I cried.

So, he was on Nutramigen full time after that.  His weight was slowly climbing, he was still fairly tall, he was hitting milestones early or right on target, and we were physically relaxing, thinking the worst of his medical issues were behind us.  Thank God!

In April it dawned on us that we hadn’t trialed him on dairy since the previous year, and most babies that don’t outgrow dairy intolerance by 9 months do so by 18 months – so said our doctor.  So, we gave him a grilled cheese sandwich.  He nibbled at it, and mostly wanted to eat my fries. We tried him on a pepperoni calzone.  He ate a few bites of the edges (mostly dough).  And three days later, like clockwork: icky poop.

So, no dairy, still.  No biggie!

Mr. Charm was growing into a flirt, a high energy wild child, a precocious, confident, awesome little boy.  We were so excited to be having another amazing baby just like him.

I was understandably scared to give birth again, but I found a new doctor and a new hospital and hoped and prayed for a better go-round this time.  Funnily enough, so many of the same things happened the second time that happened the first time, but somehow it was all better.

I had the Pitocin, which I didn’t want.  But this time, it wasn’t as intense and didn’t hurt as bad.  I had the epidural, but this time it was the way an epidural was supposed to be – not like the first time, where I could feel nothing below my neck and was shaking and vomiting the whole time.  I was allowed to walk, sit on the birthing ball, move a bit, drink water, eat popsicles, and it was a wonderful experience.  Instead of 4 days of labor, I gave birth after 40 hours.  I’d do it again in a heartbeat!

We waited for the baby with great excitement.  We like to be surprised, so we find out whether ‘boy or girl’ when they first come out into the world.  So we were excited to find out we had another boy!  Yay!  A little brother to play with Mr. Charm!  (I’d have been thrilled if it was a girl, too, though.)

This time, the Geek and I brought our baby home the day after he was born, he wasn’t sick, I wasn’t on narcotics, and it felt like our stressful medical issues were finally behind us and our family was on hunky-dory easy street.

Until the baby, who I now call Mr. Happy, was 5 weeks old, and decided to show us just how much like his big brother he really is.  Yup, you guessed it – bloody diapers.

Sigh.  Really?

So, off to the doctor we went.  Only this time, I was already dairy free (I’d read that most MSPI siblings have it, too), and mostly soy-free (only when we eat fast food, which is rarely).  So she ordered a complete Top 8 Allergen elimination diet for me.  Bummer.

Back to reading labels, scouring the internet for recipes, revamping the cookbook…thank God I’d gotten really good at this allergy-friendly cooking thing or I would have been so overwhelmed!  As it was, all I thought was “Gee, cooking without wheat is going to suck.”  (We really love my dairy and egg-free homemade honey wheat bread.)  But, I would do anything for my babies, so allergy free we went.  (Yes, the Geek, too.  He’s really awesome like that.)

The week after the elimination diet had been inflicted on us, I took Mr. Charm back for his two year allergy checkup.  Turns out, his egg allergy got worse and is now severe enough to warrant an Epi-pen.

Fan-freakin-tastic.  So we got the crash course, learned how to use it, got the forms to hand out to caretakers outlining what to do if…and thought our problems were pretty minor and totally under control.

Until I woke up the next morning…

The Beginning…

I’m going to cheat.

I started this blog to tell our story and share our experiences with FPIES (and life in general)…but WOW! Is our backstory ever long!

Rather than subject you to entry after entry of ‘flashback’ writing, I’m simply going to change the date of the post to correspond to the date the event happened.  So, I’ll be ‘launching’ my new website with at least a full months worth of posts.

I promise this won’t be my common practice; it’s kind of irritating to me, too.

Before I can tell you our FPIES story, there is another small story that I have to tell about my older son, Mr. Charm, which will be my first real post on this blog.

So thank you for reading the history behind “Cradle Rocking Mama”.