Poor, sick baby!

My baby has been terribly sick all week.  It’s just a cold, I guess, but it’s a really nasty one.  It’s so hard to watch him cough and hack and hear all the mucus rattling around in his nose and throat while he works so hard to breathe.  Last week Sunday night is when we noticed it.  He needed to be on his tummy while my husband or I patted on his back so we could help break up the congestion and so gravity would help it out.  I was terrified he was getting pneumonia.  As I sat on the couch with him across my legs, patting his back, my mind raced.  Should we take him to the hospital?  I just wish I had a suction machine to clear some of that out for him.  I knew he had to be as exhausted as I was, but he couldn’t breathe well enough to get to sleep.

He couldn’t keep any milk down and he’d had some diarrhea.  I settled on just taking him in to the doctor, trying not to be the over-reacting mother.  The doctor checked him over thoroughly; he didn’t think it was pneumonia, but did a chest x-ray just to be sure.  No pneumonia.  He sent us home with a nebulizer and had us give him pediatric electrolytes for 24 hours and to add milk back in slowly.  Max’s health improved quickly initially.  When I took him in for a follow-up appointment, I was very confident he would be over it by Monday (the doctor said to bring him in if he wasn’t).  But as the week wore on, it became apparent that he was still struggling with this cold.  He had problems keeping his feedings down when we had him up to his full feedings, and his junky cough wasn’t going away – he still needed the nebulizer at least three times a day.

Meanwhile, this natural mama is exhausted.  Thursday night we had a substitute nurse, whom I had a lot of trouble trusting – resulting in a sleepless night.  Friday night I got to bed late and Max slept poorly causing another night of poor sleep.  Saturday night was another night of poor sleep for baby – leaving me completely depressed.  It’s one of those days that getting out of bed is the last thing I want to do.  I just want to run away and forget that I ever had a child and a husband and a happy life.  You probably think I’m a terrible person now, but if I’m being honest, I have to admit that sometimes I just don’t feel like I can handle it anymore.

I hate the sight of yet another machine in my house to help keep my baby alive.  I hate listening to him cough and rattle.  I wish I could just cough all that junk out for him.  I wish I could make it easier somehow, but I can’t – and I think that’s the hardest part.

I look at this adorable baby, tiny head, overlapping sutures and all, and I can’t help but love him.  Even when I’m at my worst, I love him.  But it is heartbreaking – gut wrenching – to watch him struggle so much without being able to do anything.  The best medicine the US has to offer can’t help him.  I guess that’s why I keep reaching out for alternative methods.

Sleep strike!

For the past two weeks, Max has been on a sleep strike.  Just in time for me to come down with a serious sinus infection- complete with sinus pain and swollen glands all over one side of my face- and start a nursing assistant course.  My husband, wonderful man that he is, was kind enough to make sure I got full nights of sleep (9 pm to 6 am) the end of last week and through the weekend.  The goal was to fight off the infection as much as possible before my class started last monday.  So while I slept, he was awake trying to keep baby as comfortable as possible, feeding every 4 hours, giving massages, etc.  Then when morning came I would take over and he would sleep until noon.

It was not at all an ideal situation.  The child literally slept for 2 hours at night and 2 hours during the day.  And this became common for nearly two weeks.  Four hours out of 24!  Now luckily my mother was generous enough to come and stay with us for a few days during my first week of class – we couldn’t have handled it without her!  But seriously!  4 hours in 24?  How can a baby survive on that?  I have heard that kids with epilepsy don’t sleep well.  I’ve been told that babies with neurological damage have a hard time getting days and nights straight.  And it makes sense that his cerebral palsy and spacticity would make it hard for him to relax and fall asleep.  But even with our holding, rocking, and massage he wasn’t able to sleep more than 4 hours!

While reading for my CNA class, I came upon a table listing the average sleep requirements according to age.  Infants one month to one year were said to require 12 to 14 hours a day.  Even if he only slept a few hours at a time, my husband I should be able to get some good sleep if he was sleeping 12-14 hours a day.  But my major concern is not myself.  I can hire a nurse, or call one of the grandmothers or another friend if I’m really in a desperate state.  My primary concern is Max.  How is this affecting his development?  his brain growth?

The main reason babies require so much sleep is because they are doing so much development.  Their brains are growing a lot and they are learning a ton of new skills.  Of course they’re exhausted!  Max isn’t learning many new skills, so maybe he doesn’t need quite as much sleep as other babies his age.  But I’m concerned about his brain growth.  Is his lack of sleep inhibiting his brain growth, or is his brain not growing so he doesn’t feel the need to sleep?  And that thought makes me more curious:  is he too exhausted to learn any new skills?  is his lack of sleep actually hindering his development?

As of now I’m putting off talking to the doctor about it.  I usually avoid the doctor at all costs – we have so many appointments to juggle I can hardly find time for unscheduled visits (and most of the time when I go it end’s up being something they can do nothing about).  I guess I will have to talk to the doctor about it at the next visit, but for now I’m just looking forward to the overnight nurse starting next week!

Go to sleep little babe…

Sleep has been a hot commodity around our home since my son’s birth.  The first night home from the hospital I swear he barely slept a wink.  I was all set to soothe him to sleep.  We had two rocking chairs, I’d been working on my lullabies, and I had made a wrap that I could wear him in as I walked around to lull him to sleep.  Nothing worked.  Looking back, I guess we should have known that.  NICU babies have a hard time sleeping at night because in the hospital things are going on round the clock.

In time the sleeping got better.  Then at about three months it started deteriorating.  It wasn’t bad at first.  Max would go to sleep around 8pm and then wake around 1am and proceed to fuss and cry for 2-3 hours.  I could bounce and sway him to keep him from fussing, but he wouldn’t go to sleep.  The minute I laid him down he would fuss and arch again.  But after a couple hours, he was out like a light.  Before long, Max’s sleeping had deteriorated to:  sleep three hours, awake until 6 or 7am, take long naps all day.

Every two or three weeks he had a good night.  We tried all kinds of things to remedy what we thought might be causing the problem.  Each time Max had a good night we got our hopes up thinking that we had finally figured out the problem!  Within a day or two we realized we were wrong.  We took him off of the continuous feeding pump that fed him over 8 hours and did gravity-flow feedings every three hours.  We tried feeding over an hour with the pump to give him a consistent flow of food.  The worst was the weekend my husband was out of town for work, my mom was babysitting my nephews, and my in-laws were at a conference in Florida.  I was all on my own and Max wouldn’t sleep a wink.  Friday night he was awake for 10 hours straight, and Saturday night for 12.  On Sunday, after not sleeping all night, I couldn’t get him to sleep for more than an hour and a half at a time.  I was at the end of my rope.  I took him to the doctor first thing Monday morning.  He still couldn’t diagnose the problem.

A couple more weeks of poor sleep went by, all the while he was vomiting (via his feeding tube, because his surgery – fundoplication – prevents him from vomiting naturally) during or immediately after nearly every feeding.  Everyone (doctors, nurses, other mothers, etc) kept telling me: “some babies spit up, some babies spit up a lot.”  One day his “spit up” was a yellow liquid.  Now I to this day don’t know what that was, maybe it was just some nasal drainage he had swallowed, but to me it was the straw that broke the camel’s back.  I called the doctor immediately where I was treated like an over-reacting mother. “He just has a cold,” she said.  My husband was out of town and I cried to him on the phone.  Papa bear kicked in.  The next day we had switched to a new pediatrician and had an appointment for a gastric emptying survey.  Turns out his stomach muscle wasn’t moving.  We were literally pumping him full of food every three hours.  No wonder he couldn’t sleep.

I was told that this is common of kids who have fundoplication surgery because it manipulates the stomach muscle.  Why wasn’t I told about this before the surgery?  Why wasn’t I given any options in the situation.  I wished my son could eat on his own and determine for him self when he was full.  I know it was all to protect him from pneumonia, but it is just such an unnatural system!  Max began taking another medication to stimulate his stomach muscle.  As a bonus, it also knocked him out at night…or so they said.  We fiddled around with the dose to get it just right, and we were in business.  Max was gaining again.  But still not sleeping.

Again we tried everything we could think of.  Probiotics, breast milk fortified with formula, formula made with partially digested proteins, quitting probiotics, dairy-free breast milk.  He had good nights here and there but over all still not sleeping nearly as much as a baby his age should.  Even as he was taking three medications with excessive sleepiness as the primary side effect.  Co-sleeping allows me to rest at least while Max is in REM sleep.  I wouldn’t survive without it.

Even today we get our hopes up.  Two days in a row of great sleep!  We thought we were in the clear.  The third night?  Crash and burn…awake for 8 hours.  If all else fails I guess I can sleep when I’m dead.