Tuesday, June 26, 2012

Can I just say one thing...

In the spirit of keeping my promise of bringing you along on all the ups and downs of life with a little saint like Dominic, I just need to say one thing: grrr.  You'll be glad to know that despite what I'm about to tell you, I have kept my promise of not letting the She-Hulk out.  In the tough or stressful times the past couple of days (from fatigue of life in the hospital) I have been able to find complete comfort in the Sacred Heart of Jesus by trying to following the example of St. Therese, albeit most imperfectly (with lots of stumbles along the way, as you're about to see, sigh).

In this whole weaning process Dominic has lost a pound.  Not impressive, but still an indication that he is burning more calories breathing on his own than he was before.  So, in a moment of stupidity, I requested the dietician to come in to talk about tweaking his calorie needs.  Big mistake.  I guess she did not have time to look through his chart because she came in and informed us, "just so we know" that when kids are sick they sometimes loose weight.  Great, thanks, these parents of 4 had no idea.  Only he's not sick.  "Oh, well all the trauma he's been though..." stops and asks the nurse "we had to give him CPR, right?"  Uhm, no, wrong kid.  Poor thing, at this point surely she was embarrassed at her lack of preparation, so assumedly out of defense she said "Well then WHY is he in the ICU?"  He's on a vent.  There are only two places in the hospital vent kids can go and the other unit is full.  Blank stare.  "Well, all scales are calibrated differently, so that's probably what it is."  I chimed in "nope, he's been weighed on the same scale since admission."  She must not have heard... "the bed scale is different from the infant scale."  Yes, thanks, I know, this bed doesn't have a scale.  After another round of this and leavig the room to read his chart she came in: "Oh, the chart says he's been weighed on the same scale every time".  Yes, thanks, that's what I said.  "Well, he was needing to loose weight anyway, so it's okay."  To which I answer "great, thanks for coming by."  What else could I say?

Fast forward a few hours.  Our normal dietician calls and says not to worry about it either, he needed to loose a little weight.  Cause babies are supposed to be waifs.  Especially breastfed babies.  Right.  I ask her about what type of choleserol I should be adding to his diet, as the frozen breast milk will run out in less than a month and I was really relying on that for the grunt of his cholesterol needs.  Apparently they are not convinced additional cholesterol is neccessary any longer since they don't have a definitive diagnosis, so she says not to add any above what he is getting (opposite advice from a month ago).  OK.  Double grrr.  We KNOW he is not mylenating like he should and we KNOW he can't make cholesterol on his own.  We KNOW his optic nerves continue to shrink, as does the frontal lobes of his brain.  We KNOW his brain is not growing.  We KNOW a healthy brain needs fat.  So tell me again why we shouldn't be adding cholesterol?  Oh that's right, it gives you heart disease.  Well pardon me for being so blunt but when your kids brain is shrinking, MRI report shows his nerves are continuing to get smaller, he's not laying down the FATTY sheaths over his nerves like he should, and frankly we don't know how long we will have the pleasure of this little saint, who gives a damn.  And here's something else while I'm on it.  REAL food doesn't make people fat and sick, crap food does.  There, I said it.  {{Deep breath}}

So, after that explination she continues by recommending perhaps we try formula after the breast milk is done if he doesn't tolerate cow milk.  Do you know me AT ALL!?!?  Let me just say if a mom is gonna exclusively pump for almost a year and go through all the trouble to make everything from scratch for this child, to do all the detailed calculations for every single ingredient in his blended food, down to calories per milliliter (and sucrose, and cholesterol per ml) do you think I'll roll over and play dead that easy!?   Firmly, but politely, I say real people deserve real food and we will not even entertain formula for a non-infant.  We will just have to figure this out with food.  She agreed and we hung up friends.

Afterwards Mike congratulated me on being nice.  All we could do was laugh and remind ourselves why we don't normally ask permission for this sort of thing.  So, there you go, a day in the life.  We can't be too upset about anything right now though.  Our little man is breathing 10 hours a day off the vent and staying nice and pink.  AND we get to come home in 3 days!  As I write I'm asking myself  "is this how a saint would have handled this?"  Probably not.  But hey, compared to what I would have said a few months ago (think bag dog... another story for another night), I did reasonably well.  God bless sweet Dominic, and God bless those dieticians... I'm sure they have their hands full with crazy parents like us.

In Jesus and Mary,

Sweet Mary Grace loves her baby Bubba


  1. Little Mary is such a good big sister!
    Loe you all - Tab

  2. UGH it is so hard when people wont even read the chart before entering the room and making sure they are talking aout the right kid..