Coping with Reflux Disease

My little boy, Eli, is nearly 6 months old and somehow, we have coped with the relentless regime so far.  Whenever I tell people he has reflux, I think most people tend to think of normal posseting and don't know how much of a big deal it is.  For those without children a posset is just a small mouthful of sick and all babies do this after a milk feed.  Our kind is of the projectile variety! 'So what's a bit of vomit?' I hear some people say.  That on its own is frustrating at the best of times.  When you get absolutely covered.  Needing to change the baby and yourself.  Thankfully it's only been so bad I needed a shower just the once.

But the worst part of it all is how never ending it is.  Ok, I agree, babies are hard work generally.  But oh, if we had the luxury of a 4 hour feeding regime and no medication, that would be bliss! With 3 hourly feeds around the clock, including special requirements and 8 lots of medication, check it out below what our daily routine entails.

The Schedule

6am - Medication, 1st dose of Dom Peridone. This medication relaxes the sphincter to allow fluid to be drawn through.  One of the problems Eli has is that he struggles with large volumes of food.  Hence little and often with 3 hourly feeds.  Thankfully, my husband does this before going to work.  I'm not a 'morning person' and having a baby hasn't changed this! Being a night owl, going to bed early to get up early is somewhat alien to me!

6:30am - Milk feed.  My lovely husband does this too before work.

9am - Medication, 1st dose of Ranitidine.  This medication is for the acid.  Supposed to stop it coming back up.  This is where my day starts.  Eli hates this one and screams the house down.  It can take 5-10 minutes to squirt about 1ml of liquid into his mouth.

9:30 - 10:30am - Milk feed.  From the start this took us an hour, now we're mostly done in half an hour to 45 minutes.  We can't let him guzzle the whole lot in one go as he can't cope with it.  He'd just vomit.  So we have do about 30mls, then get a burp.  Again, no burps equals more vomit! Not so much now but we used to have to then pause for at least ten minutes before carrying on.  All the way through, hence why it takes so long.

12pm - Medication, 2nd dose of Dom Peridone. This one is a bit easier as he doesn't mind it as much as the Ranitidine.  But note, we only get an hour and a half in between feeds and medication.  Which carries on all through the day.  Not the luxury of 3 hours if he was on a 4 hour feeding schedule. 

12:30pm - Milk feed.

3pm - Medication, 2nd dose of that nasty Ranitidine.

3:30pm - Milk feed.

6pm - Medication, 3rd dose of Dom Peridone.

6:30pm - Milk feed.

8:30pm - Medication, Omeprazole.  This one is supposed to block the production of acid in the stomach.  My husband takes over from this point and often does the 6:30pm feed when he gets in from work.

9pm - Medication, 3rd and final dose of Ranitidine.

9:30pm - Milk feed.

11pm - Medication, 4th and final dose of Dom Peridone.

1am - Milk feed. Again, my husband does this one.

4am - Milk feed.  My turn for a night time feed.

Recently, the schedule has changed again.  We started early weaning about a month ago (under the hospital's guidance).  But we kept up with the above schedule for 3 and a half months. (From when Eli was finally released from hospital in May).  The sleep deprivation was getting ridiculous! We still have 8 feeds a day, now 6 milk feeds and 2 solid feeds.  So still 3 hourly and all the medication.  Just no 4am feed thankfully.  We take it in turns to do the 1am instead so we at least get alternate nights of a long block of sleep.  It's better but somewhat of a tease! Every day  when I'm due to get up I just want to sleep forever.

I feel like this continues to get harder.  My dear Mum told me, (and I'd heard it from others too) that with having children, things don't necessarily get easier, the difficulties just change! But considering I work with and have experience of 2-5 year olds, I'm very much hoping it's at that point it will get easier.  Plus it's my favourite age, just when the conversation starts.  I love it, the things they come out with.  Such simple ways of looking at things, no worries, no cares, no inhibitions that some of us may carry as adults.

I was so looking forward to having my baby when I was pregnant.  I was somewhat delusional and so I'm told, most first time parents are.  But having reflux to deal with on top of the normal adjustment that 'your life is not your own anymore', it was and still is, a bit too much to deal with.  I read another blog somewhere about how reflux takes the joy out of parenthood.  I can really identify with this.  Even now, I ask God what the purpose of it all is for.  Remember, no point asking why when hardship comes.  Better to ask what the purpose is or what you're supposed to learn from it.  Strength of character, endurance, among other things are what have come from my trials and tribulations.  The worrying this is, the answer I received was 'to prepare you for what is to come'.  Very cryptic and not much of an answer! We shall see what God has in store for me.