As Long as a Book

It's been a while since I've given a comprehensive update on Samuel.  Here's what's been going on.

This last month and a half Samuel has really been a lot of fun.  He's much more interested in his surroundings.  He stays in a fairly constant good mood (with the exception of the last week.....maybe teething?) and loves to smile.  He and his daddy have really bonded - Samuel would prefer to play with Michael over me any day of the week.

Samuel LOVES to put things in his mouth.  Anything and everything.  Often times, I'll pick up a toy only to find it soaking wet with drool.  Gross.  His favorite things to play with right now are a cow-shaped rattle, a crinkling teething book, and paper (which I only give him if I sit and STARE at his mouth to make sure he isn't putting the paper in it!)  Just the last week, he has been reaching for things that are on the floor beside him.  He'll streeeeetch out his arm to get them and will sometimes try to bring his other arm over.  I'm thinking that he may start rolling from his back to his sides soon.  He's also just begun to reach for toys while pushed up on his belly (it's really hard for him because it requires so much effort to just stay pushed up.)


He's discovered his feet but he can't really reach them over his big belly.  He likes to look at them though.  When I hold his feet up to change his diaper, he takes full advantage of the opportunity to grab his little toesies.


Samuel's preferred position is still standing.  He LOVES to stand....and recently walk.  We'll stand him up, hold his hands, pull him toward us, and he actually takes steps!  Maybe this is normal for a 5 month old....but I was pretty impressed.

 Now that he is off the oxygen during the day, I take him around the house as I work on things.  He's very interested in what I do.  When I walk by the Christmas tree, he reaches out and grabs one of the branches and the tree starts to lean until I catch it.  "Just keeping you on your toes mom!"  When I'm writing something down on the notepad that's on the fridge, he grabs off another piece of paper and and immediately begins to chew on it.  When I make myself something to drink, he grabs the rim of the cup and pulls it up to HIS mouth.  I love that he's interested.

Sleeping is still hit and miss....but it's getting better.  He's usually awake by 6:30 or 7am....20 min naps at 9am, 12pm, 3pm, and 5:30pm.  Goes to bed around 7:30 or 8pm.  The truth about the nighttime feedings is that it's pretty much my fault that he isn't sleeping longer.  I'm experiencing some guilt over not having him trained better.  Those bottles are by FAR the easiest bottles to give him of any (see below for further details) and I just can't give up the calories.  We usually give him a bottle around 8pm, 12am, and 4am.  The last couple of mornings, Michael and I have walked in to discover that Samuel is BRIGHT EYED at 4am.  Thankfully he usually goes back to sleep.


All of this SOUNDS like we are getting a fair amount of sleep....but we aren't.  Samuel's aim (with his hands) has gotten significantly better - which means that he can take his cannula out of his nose any time he feels like it.  Cue monitor BLARING.  We are putting the cannula back in his nose at LEAST 5 times a night....if not more.   It also really irritates him when it's in, so he fusses off and on and kicks his legs.  Cue more BLARING.


Health wise, Samuel has been doing fairly well.  So far, no colds, no major bugs.....and he's gaining about an ounce a day.  He's about 14lbs 10oz today.

However, despite the weight gain, he continues his eating strike.  In fact, it's gotten worse.  MUCH worse.  Last week he would take the bottle after some fuss....usually a bigger fit was thrown in the evenings before bed....but once he went to sleep, we could wake him up anytime and give him the bottle without incident.  This weekend, things began to change.  He's not wanting his bottle during the day now either.  We put the nipple in his mouth and he cries and cries and CRIES.  If we do get him to latch on, he'll take a gulp or two and start crying again.  Yesterday was the worse day of all.  During the day, I literally had to MAKE him take a nap each time I needed to feed him just so that I could give him the bottle in a sleepy state.  Last night, (around 1am) I gave him a bottle and he started crying when he was only half way done.  That was the last straw for me.


I can think of only a few reasons why he would suddenly go from happily eating 160mls every 2.5 hours to being FORCED to eat 160mls every 5hrs.  1) We are trying, for the first time, a generic form of Prevacid to control Samuel's reflux.  Maybe it's not working.  2) He is constipated and just really doesn't want to eat.  3) He is teething and the bottle doesn't feel good in his mouth. 4) He's developed an aversion to the bottle for some reason.

So.  After 2 days of nonstop phone calls to my insurance company, the local pediatrician, the nurse at ACH, the local pharmacies....I think we have a plan.  I'm going to pay out-of-pocket for the name brand Prevacid (which my insurance will not cover.  It's a whopping $155 for a month's supply.)  Hopefully after a few days, Samuel's esophagus will have healed if there was any damage from the reflux and he will begin taking the bottle again.  The nurse at ACH is hoping to schedule him for an upper GI scope.....just to check to see if there is something causing him pain when he swallows.  She doesn't feel like it's behavioral since he's been taking the bottle fine for so long.....  If it's teething...  well....  I'm not sure what we would do besides wait it out.

I really hope we figure something out soon because this is SO frustrating.

We haven't made much progress on coming off the oxygen at night.  In fact, we've sort of regressed with that too.  He's fairly consistently requiring a half of a liter any time he's in a deep sleep.....when we came home from ACH in July, he was only needing an eighth of a liter around the clock.  The good news is that we are still off during the day (which has made our lives SOOOOO much easier.)  After informing ACH that we are up on the O2 at night again, the doctor said that Samuel's chronic lung disease was probably 'significant' and decided to refer us to a pulmonologist.  WHOOHOO about FINALLY being referred to a pulmonologist.  I've been asking for that since August.  I don't really care for his chronic lung disease being called 'significant' but I'm going to take it with a grain of salt until the pulmonologist sees him.  Our appointment is at the beginning of January.

We go back to ACH on the 21st - for our Medical Home appointment and hopefully to get the upper GI scope done.  The next day I have an appointment with our local pediatrician for a well visit.  Prayer for good appointments, for better eating, and for oxygen weening are very needed.  Especially the eating thing.

WOW!  If you read that whole thing, you must REALLY love us.  :)
PS - thanks for all of the encouragement recently everyone.  Your sweet messages help so much!

Just because you read this far....here is an extra special picture showing you how DADDY dresses Samuel (when left to his own devices.)  His onesie is a John Deer onesie that says "I dig dirt."  It's buttoned OVER his pants.  I love the one sock on and one sock off thing....