Tuesday, June 25, 2013

Baby #2- My "Extraordinary" Child

Oh sweet baby boy.  Please tell mama what's wrong, and I will fix it.  I will do anything.  I just want you to get better.

This post will be mostly facts- listing out what happened when.  It's a lot. I still think it's sorta crazy.  

Baby Boy 2 came home from the hospital on December 23.  We started calling him Boo right away, so I'll use that name for him here.  I had a great delivery and was happy to no longer be pregnant.  He seemed like a normal newborn to me- but I had no real point of reference as far as taking care of a newborn 24/7.

We had a home nurse visit on December 24.  Boo had lost a lot of weight from the hospital- he was down to a tiny 5 lbs, 13 oz.  We had to start trying to supplement with formula, even though he was nursing around the clock.

I remember on New Year's Eve, we started calling Boo a "griper".  When I laid him down on his back, he'd squirm and fuss and even sort of crunch his abs up and whine.  We'd tell him to "stop griping." We sorta laughed about it, but apparently that's not normal for a 10 day old baby.  On day 11, our day started at 6 AM, and he griped all day, fussed, cried, screamed, and by the time I called the nurse line at midnight, he had slept a total of 15 minutes THE WHOLE DAY- no matter if I held him or put him down or walked him around or rocked him.  Not normal for a newborn.  The nurse said she had no listed protocol for a baby who didn't sleep at all- only for babies who slept too much.  I called our pediatrician the next morning and she saw us fast.  When I laid him on the table and he did the griping, she was alarmed.  She sent him for blood work.  We waited all day, and they called- results normal.

Trying to sleep- starting to "gripe" 

The next week was exactly the same.  No sleeping, all griping, crying, fussing. He'd arch his back and be really stiff when you tried to bend him in the middle.  We could hardly get him in a car seat. Nursing was terrible- he'd latch on and then pull off immediately and cry.  Feedings took hours, and he still wasn't really gaining weight. I called the dr again and she said it was time to do more tests. At 6 weeks, he was diagnosed with reflux.  He was started on Zantac.  I remember her telling me "most babies" would get over reflux by 4-6 months old, some would go on for a year.  I can't take a year of this, I thought.  She also said some kids don't respond to Zantac and he might need something stronger.

I think the Zantac helped for a few days.  Then it stopped.  They upped the dose.  A few more nice days, then back.  He was switched to Prilosec.  Again, maybe a week of relief.  We held him non-stop.  My husband had gone back to work, and I was left alone with a 3 year-old and a fussy, demanding, round-the-clock needy baby.  I saw friends with babies who'd sleep through church in their carriers.  Or hear all about babies his age who were "so hard to wake up" to nurse.  He never slept- I didn't have a problem "waking him up."  We couldn't even take him to church.  He was way to fussy to leave with anyone and I couldn't keep him with me in the service because he was so loud.

And when I say he never slept, let me be clear: this was not a behavioral thing.  He wanted to sleep- he was exhausted.  He'd pass out in my arms and wake up minutes later, crying from being in pain.  Laying him down just made him feel worse. There was no "sleep training" to be done. He was so uncomfortable, awake or asleep, it didn't matter.  He'd sleep a little in my sling- that was a good position for him, but just for like 20 minutes.

SIDE NOTE: At 6 weeks old, Boo got RSV.  He was very very sick.  He ended up being admitted to the hospital for 6 days.  I was a wreck.  Exhausted, worried, scared.  Parents of babies- take the RSV threat seriously, please.  He obviously survived.  But it was not a fun ordeal.  Hospital stay #1 for him. 

He had started arching his back so severely to get away from the pain that he couldn't even lay flat.  His muscles were developing incorrectly.  Our pediatrician recommended a specialist, and also said if he didn't get help soon, he'd need physical therapy for his arching.

At 11 weeks, we were sent to a GI specialist.  (I want to throw it in there that the day before his appt, my little sister was holding him at our parents' house.  She took him in the other room to rock him.  I found her in the nursery crying.  She looked up at me and said, "What's WRONG with him?" She had never been around such an uncomfortable baby, who squirmed and arched and fussed.  She thought there was something else neurological or something wrong.  That is how sad it was).  So we went to the GI doctor in KC. Ok, we went to his FIRST GI specialist.  This guy listened  to all the diet changes I'd made in my diet to help him, and all his symptoms.  He was nice, but he basically just prescribed Nexium for him and left.

So at 11 weeks old, we started giving him Nexium- we'd open capsules, measure 1/3 a capsule into a spoonful of applesauce, and try to feed that to a tiny little 3 month-old baby.  It was crazy. But he took it like a champ.

And about a week into it, he smiled.  Really smiled.  He sat on the couch, propped up with pillows, and giggled at his brother. I think he started napping for about 45 minutes at a time, which was like a dream to me.  We still had days when I had to walk him around all day in my sling to keep him from crying.  But overall, there was improvement.
Happy Nexium Baby

Around 5 months, he started sleeping from about 10PM to 2AM.  This was awesome.  He had also become a chunky monkey.  He got the hang of nursing.  It was going much better- still nothing like I saw my friends' babies.  But better.

Let me stop and say something here.  When people say their babies have "reflux", it can mean a lot of things.  We learned later that "acid reflux" and "gastroesophogial reflux disease, or GERD", were two different things.  Babies who spit up, or have a little pain, have reflux.  Kids who go on past 6 months and aren't fully helped with things like Zantac probably have GERD.  This is something that really needs a lot of management and is very stressful on a family. I remember sitting at a play group, which I tried to do for my 3 year-old, holding my griping, fussy baby, while this other mom's baby slept in the playpen for the whole 2 hours we were there.  When I explained that Boo had reflux, she said, "Oh  yah, my son has that too."  Uh, no he doesn't, I thought.  He might've had reflux, but he didn't have GERD.  
His Nana holding him, wrapped in his swaddler, trying to  comfort him.

At some point, Boo started having diapers full of mucous.  Our specialist decided he also had MSPI, which is Milk/Soy Protein Intolerance.  I eliminated all dairy and soy from my diet (plus threw away tons of frozen milk I had stored) and started over.  I will say this did help him.  I hated it,  but it did help.

Things were not easy, but we did start to feel slightly normal from months 6-10.  He wasn't a good sleeper, but I slept when I could.  I'd maybe get 4-6 hours of sleep in a night, broken up in chunks.  We took turns rocking him and we even had a routine where my husband would get up at 5 and rock him till 6:30 so I could sleep that "long" chunk before it was time to start our day.  We survived.

I read and researched and tried everything suggested to help GERD.  I always had a sneaking feeling that there was something else wrong, but I was trying hard to not be a hysterical mommy.

But while I was trying to not to be hysterical, I was exhausted, lonely, frustrated, worried, upset, and felt nothing like myself.  I went to work for a few hours a week, leaving him only with trusted friends who I knew would love him despite his fussy/no sleep personality. Other than that, my social life was nothing, my time with my husband was very limited, and I felt like Son #1 barely recognized me.  But I loved my little Boo, and was determined to help him.  For now, that meant holding him, nursing him, giving almost every ounce of energy I could to him, and fighting for more answers.

I titled this post, "My Extraordinary Child."  That's because at every turn, we were quoted statistics. Things like, "only 5% of kids don't grow out of reflux by 6 months."  Or "only 3% of kids are hospitalized for RSV."  No matter what the statistics were, he always fell on the "exception" side.  So we called him our exceptional child.  He likes to be different.  He is good at that for sure!

And this post, while factual, is painful for me to write.  Mainly because I can barely barely barely remember my cute, sweet, lovey boy at this age.  I was too tired. I was too worried. I was too desperate to find answers.  I won't say I didn't treasure it- some days went on for years, it seemed, and I tried to soak up the time when he needed me so badly.  But it wasn't enjoyable or fun or peaceful.  I am sitting here today, pregnant with twins.  And since the second the pregnancy test showed two lines, my prayer has been that we won't be on that road again.  It's genetic. And I haven't even told you the whole story.

But no matter what, this time around, at least I know a little more what I'm doing. And we survived it once. We can survive, and even thrive through it, again if we have to.

So we're here at 10 months.  I'll tell you the rest in the next post.


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