From good to bad to worse

Yeah, so I started today out feeling better about the 'situation' and even got as far as to write a post about the good news.  Then the rest of my day took over and now I feel desperately unhappy again.

I'm just not getting a good grip on Little O's feeds.  I've been trying for so long to adapt and persevere, but it seems like there's a constant wall up ahead that I can't climb over.  Since he came home from the hospital on June 10th, 2009, my husband and I have battled and battled to make sure Little O has been fed properly and makes gains in his growth and development.  We've tried so hard to offer him a variety of foods; changed formulas three times (four if you include breastmilk); worked with gravity feeds, pump feeds, bottle feeds, spoon feeds, safety-feeder feeds; and all along we've had experts in our ears telling us to 'switch this', or 'stick with that'.

I'm exhausted, and I've spent a great deal of today in tears.  Last week we weighed Little O on our home scales and were dismayed to see he still hasn't gained any weight since April.  April!  I took him to Seattle in April.... it seems a very long time ago.  After noticing this problem I called his nutritionist and suggested to her we try feeding him his PediaSure when he's asleep ONLY.  He's generally a very good sleeper and will sleep for about 11 or 12 hours at night and another three or four in the afternoon, so the idea of slowly pump-feeding him while he naps seems like a good solution.  The theory is that he'll not only stop throwing up (because the rate is so slow on the pump), but it will also free up large portions of the day to concentrate on oral feeds.  If I'm not having to force liquid nutrition into him while also forcing a spoon into his mouth, it means he's less likely to throw up solids, AND he'll hopefully enjoy oral feeds more.  And then, the more oral intake he has, the less liquid nutrition he needs.

IMAGINE!  Imagine this glorious world where your baby boy doesn't live in constant pain.  Imagine packing the burp cloths and wipe-up rags into storage because you don't have to mop up sick five times a day.  Imagine feeding your child like any other family, where dinner time isn't battle-time and you don't have to mentally and physically gear yourself up for war.  Imagine putting your child to bed knowing they've felt no discomfort all day and that they can look forward to a tomorrow where eating is a nice, enjoyable activity.  Just imagine...

Today I can't imagine this world.  This world seems very far away.  My baby boy is nearly 15-months-old and his reflux is still the hardest challenge he faces.  He woke up several times in the night to throw up or just scream, and even when I went in at 7.30am, the pump still had nearly 100ml left to go.  I don't know what to do.  I can't set the pump to go any faster because he'll just throw it up, and I can't leave the food in the bag because he needs the nutrition to grow.  I can't run the pump for longer because he needs to be asleep, and I can't let him sleep for longer because then he won't nap in the afternoon...

Yesterday I was so pleased that Little O went down for his nap at 12pm and slept right through until 3.30pm.  I was pleased, because it meant he got all his PediaSure and I didn't have to worry about a thing.  That was, until I went to wake him up and saw that the med-port on his extension tube (the tube that clicks into his stomach) had popped open during his nap, and he was laying in a large, wet pool of pink PediaSure.  So after three and a half hours of pump operation, Little O had digested exactly nothing.  Nada.  Zilch.  And this morning I went in at 7.30am because he was yelling his head off, only to discover that he'd thrown up a large volume of goo, and was now laying in a large, wet pool of chocolate PediaSure.  And that brown stuff STAINS.  So, for the second time in two days I had to change his bedclothes, comfort a soaking wet little boy, and fret about the fact he's not getting enough food digested.

I am just SO DONE WITH REFLUX!  I cannot, cannot keep fighting this battle.  I just can't do it.  I don't have the patience.  I certainly don't have the energy.  I cannot keep explaining to experts how horrific our lives have become only to have them dismiss my words.  I'm so sad and angry and frustrated.  I need for this to go away; I need a Fairy Godmother to come and visit my house and whisk us all away to that lovely other world where Little O doesn't cry out in pain in the middle of the night and where bedsheets aren't stained to the point of embarrasment.  I need for someone else to take care of us.  I need to be able to focus on something, anything else but whether my son is growing and eating and comfortable.  I need a break.  A real, honest break. 

I need to see to my sister.  I really miss her.  I miss both my sisters, but sometimes you just need a hug from your big sister and you get the energy back to fight another day.

God, I need some help.  And I need to stop crying.

Tina.