Tired

I have been wanting to write a post for a while now but these past few days have been rough, really rough.  Like the worst so far.  We went from continuous feeding  to bolus feeding and I don’t know exactly what is going on but something isn’t working.  Our inital trial at bolus feeding was every 2 hours and we did that  for 2 days and it was exhausting.  Still a little urpy but probably nothing different from a non-reflux baby.  Evan has been fussy tho but who knows exactly why.  Then we tried to move to every 3 hours and we are back to getting more puke, although the volume isn’t where it was before it is still more than just spit up.  Evan had a really bad puke scare yesterday morning – like he must have felt like he couldn’t breathe or something and freaked out for over an hour.  It was just when we called the Dr. that he finally calmed down (of course).  Ever since then any puke situation is a freakout situation and he will scream like I’ve never heard before.  He is in general very fussy, very needy, like needs our attention constantly.  He wakes up crying a lot.  And I thought he was high maintenance before.  Plus with us being sick it has just been awful.  He is also biting and chewing things a lot which makes me think maybe he is teething but I don’t see any teeth, putting the oral stuff in his mouth did nothing, he doesn’t have a fever and isn’t drooly.  Generally you can hold him and he will be ok but you have to be walking around or moving.  It has been exhausting.  We are  tired.  We are stressed.  We don’t know how we are going to manage this, work, and appointments.  I’m beginning to feel overwhelmed and frustrated that this could go on for who knows how long and who knows why.  I don’t want this life to become our version of normal.  What are we doing wrong?  What are we missing?

Bubbas, I wish so much you could tell us what is wrong.

Are you teething?
Are you feeling sick?
Are you tired?
Do you have a headache?
Does your chest hurt?
Does your heart  hurt?
Does your g-tube hurt?
Are you having digestion issues?
Does it hurt to eat?
Do you need more to eat?
Do you need more pain meds?
Do we need to feed you more slowly?
Are you just plain spoiled?

Despite all of that, there have been a few brief, brief moments of “old Evan” and we’ve had a good time.

The boys worked in their home offices:

We went for a walk on a “warm” day earlier this week:

We discovered that Evy learned how to use his leg to grab onto toys on his vibratey seat.  I love watching him learn things:

Evy also learned what a beard was and how perfect they are to pull:

Evy hung out with his cousin:

Evy got to say goodbye to family:

And mama learned there are 4 steps to getting a baby ready for a walk:

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