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,
Chasity

Sweet Mary Grace loves her baby Bubba

Baby Food!

Yesterday was homemade baby food day!  I am such a procrastinator I put it off until the last possible moment, until only 1 jar of baby food remained.  My life story... waiting til the last minute to do something important... but hey, I always did work best under pressure.  Here's to encouraging all the oral feeding momma's and medical momma's out there to give this baby food thing a whirl. Start small and gain confidence.  It feels so good knowing you are feeding your child something YOU made.  Even if the rest of the house is upside down, you have other children dangling from the living room fan, a pile of dirty dishes in the sink and your laundry room has runneth over... at least you have tangible evidence that you've done something.  But please, don't over-burden yourselves... heck, if they made real food with a real variety for G-buttons, I might just give it a try, but alas, they don't, so here I am.  So, here goes!

Just cut these babies in half (butternut squash), remove seeds, and roast.  I'm inpatient so I roast everything at 425 degrees.  If you are super woman, you can wash seeds and roast for the other kids, but I am not, so mine found their way into the trash :/.  Scoop out tender flesh once cooked and add water or one of the other foods cooking liquid, blend.

Peel, quarter, and core apples, bake until soft.  Mmmm, my favorite.  Baking gives the food such a deeper flavor, and even though Dominic doesn't taste his food most of the time, he will uses the apples for oral feeding trials.

Admire how cute your baby is, you know the little bogger that you are doing all this work for.

 I use frozen organic broccoli and green beans from Costco... super easy, just steam and blend.  SAVE the cooking liquid, you will need it for your drier foods such as the squash, apples, and pears!

I bake as much together as I can.  Here are the pears quartered and cored and res bell peppers.  They'll all go in the same big pot anyhow!

 I use two big packs of organic spinach from Costco and steam.  I love the dark green water left over... the original "Vitamin Water."

Thanks to my parents, I have a Vitamix, but I used a plain old blender for my first three kids.  Here it is in action with the spinach.

Admire your sweet baby...



And kiss his little toes...

Here is the pears and red bell peppers being blended.  The Vitamix does make easier work of this!

 Pour everything into the biggest pot you have.  I'm a nerd so I love to watch this progress to the top.

                                                                           Stir...

 And voila!  You have REAL food, made for a REAL person in about 3-4 hours.  I use canning jars b/c they are glass so you don't have to worry about chemicals from plastic leaching in and because they are cute :).  His new food this go-around is carrots, which is why they are separate.

And here's to one tired momma and one happy baby boy.  Go ahead, drink a Coke.  Nothing like celebrating real, wholesome, homemade food with a non-food product :/.  Hey, you can only do what you can do!

This batch should last about a month.  The mixture includes spinach, broccoli, green beans, red bell pepper, pears, apples, butternut squash with carrots on the side.  He is old enough to start trying meat, so maybe I'll add some chicken next time!

Genetic Testing

From Dominic's birth his neurologist has thought Dominic had a genetic condition called Smith-Lemli-Opitz syndrome, but his cholesterol levels have always been pretty normal (or averaged out to normal: 2 high, 3 normal, 2 low), which would not happen with this disorder.  This syndrome effects the last step in the body's process of making cholesterol which is vital to normally functioning life.  It's funny how we all hear the word "cholesterol" and automatically think "heart attack!" but in reality it is very important in our bodies... the good kind, not the McDonald's kind.  Without the proper levels of cholesterol, the nerves are not able to maintain their myelin sheath.  Cholesterol also is a precursor to Vitamin D.

Anyway, this doctor has always highly suspected this and despite the metabolic geneticist and geneticist saying he doesn't have this condition because of his mostly normal cholesterol levels, the neurologist ordered a genetic test anyway (I love him).  This is where it's a bit confusing.  The test came back negative, but there were 7 mutations on the gene that carries this syndrome.  The neurologist says that the 7 mutations are very unlikely to occur on the same gene.  Maybe 1 mutation, but not 7, thus he is still convinced Dominic has some form of this condition.  He is ordering a full genome panel, even of the genes not yet mapped in science, to see all mutations in his DNA and try to make a diagnosis.  He warned me that this full panel will most likely show multiple mutations and can lead us on a wild goose chase if we let it (by pursuing every little mutation we find), but if we have a big picture, it may allow us to make a positive diagnosis.

A diagnosis is so important in this case because we can use cholesterol supplementation to try to replace the cholesterol the body is not making.  Do you know that test they do to every newborn shortly after birth where they prick their heel and collect the blood on a piece of paper with 5 dots?  That test is looking for a disorder called PKU, which is a very serious metabolic disorder that if not found early can lead to mental retardation and seizures.  PKU is the first cousin if you will of this disorder.  If this syndrome is caught early, cholesterol supplementation can help lessen the severity of some of the symptoms later in life, such as the autistic and behavioral tendencies, but unfortunately it can not be managed well enough for the child to be "normal."  We have started on a an egg yolk a day regimen anyway, just in case the test is positive.

It is estimated that 1 in 20,000 to 60,000 babies conceived have this disorder, but it is hard to say since most are miscarried or stillborn, and now with the advent of the screening test, are aborted.

So, in a few days we will be admitted to the hospital for a 24 hour EEG to check for seizure activity and then Dominic will have the blood test for the full genome work up.  It's funny, in college my favorite subject was genetics.  I loved it so much I took extra genetics classes to forgo my requirement for a foreign language (yes, I'm a nerd).  I even considered becoming a genetic counselor but decided not to when I found out that some of that counseling included giving the parents the choice of killing their less-than-perfect child.  Is an imperfect life not worth living?  It seems to me that these are the lives that point us to our ultimate destination.  These people make us uncomfortable because they force us to think.  Think about the hard questions: why?  what is the purpose of this life if not to be productive?  what is a life worth?  They pop our little bubble of normalcy and force us to stare death in the eyes.  Or perhaps I should say they force us to stare God in the eyes.

All this I am struggling with.  Please keep us in your prayers.

In Jesus and Mary,
Chasity

Perfect.

How to blend food for tube feedings

I have been asked by a fellow medical mom out there to post about how to make baby food to give through the g-tube.  Because I do this how I cook (by the seat of my pants) I have been having a hard time thinking of instructions.  Here's a stab at it:

I go off of a chart the dietitian gave me that says how much food, at different ages, a baby should get.  Depending on his weight and age there is a norm for how much milk, veggies, cereal or grain, and meat they should get.  Luckily the dietitian we use now (we fired the old one) is very laid back so I make the plan and she okays it.

I just thought about how I fed my other kids at this age and went from there.  With the other kidlets I gave them 3 solid meals a day with bottles and snacks in between, so that's what I did here.  He has 3 meals with almost pure baby food (with a little breast milk to thin it out) and 4 "bottles" spaced around that with a little baby food to make them more substantial.  I took the amount of each type of food (milk, veggies, cereal) needed for the entire day and just did some math to space it out over the day.  He gets fed every 3 hours during the day and once over night.  Here is his schedule:

8am, 2 pm, 8 pm solid meals- 50 ml breast milk, 80 ml fruit/veggie, 25 ml quinoa
11am, 5pm, 11pm- 155 ml breast milk, 20 ml veggie/fruit, 20 ml quinoa
3:30 am- 155 breast milk, 40 ml quinoa (to make his tummy feel fuller and help him sleep better)

OK, now for the food choices.  I am introducing new food every 3 days to check his tolerance, just as you would a baby who eats normally.  He has other special dietary needs thrown in there (sucrase deficiency) so I work around that too.  My goal is to have a complete array of healthy food I know he can tolerate so by the time he is off of breast milk so we have a complete nutrition blend.  Each time I figure out a new food he can tolerate, I will add that to my mix for next time I make baby food and put a test food in separate containers.  For example, now I know he tolerates spinach, broccoli, green beans, and butternut squash, so I blend those foods, mix it up in a huge bowl and them put that mixture in mason jars to store.  This saves me time when I am preparing the feedings, everything is all mixed up and ready.  Then whatever new food we are trying I add separately to the feeding so I don't contaminate the mixture, in case he can not tolerate it.

Making this food could not be simpler, so I encourage you to try it!  I will admit right here that my awesome parents bought us a Vita Mix, a blender on steroids, so it does make it easier.  But don't despair!  I made baby food for the first 3 kids with just my ordinary blender, so you can do it!  With a regular blender you may need to add a little more liquid to get it as smooth as you want.  The biggest thing is to blend the heck out of the food so it doesn't clog the tube.  With a regular blender, I used to literally shake the blender as it was blending to get the food all down by the blades... don't be scared, you've got to mis-treat those sometimes :).  Here is what I do so far:

-Apples and Pears: peel, core, cut up, bake covered at 350 until tender with a fork, blend, add water in necessary to get thin enough.
-Butternut squash: cut in half, remove seeds (save for roasting- mmmm), place cut side down and bake 350 until tender (30-45 mins), blend as above.
-spinach, green beans, broccoli- steam until tender then blend with cooking juice for added nutrition
-red bell pepper: cut up and take out seeds, bake 350 until tender.  Remove skins, blend with water for consistency
-Quinoa: I powder mine first by putting it in the blender and letting it go until it's fine, but as he gets bigger and I have a full nutrition blend I feed him I will probably just cook the whole seeds then add to the mixture to be blended with the other foods.   For powdered, I don't measure (sorry).  I put about 2 cups water in a pan and heat until boiling.  I add powdered quinoa and wisk vigorously until the desired consistency (baby food); remove from heat.  Whole quinoa: double the amount of water to the amount of quinoa ( cups water for 1 cup quinoa).

For all foods, I make big batches and freeze, so it's easy for the next 1-2 weeks to just grab a jar out of the freezer when I run out.  Remember, if you are freezing in glass jars, allow the food to freeze first, then put the top on, if not you will have a mess!

 I would encourage you to give it a whirl (pun intended)! If you are overwhelmed, pick just one food to blend for now and add it to the formula your child gets.  I have the chart the dietitian gave me, and I'm happy to share, but i don't know how to attach it to the blog, so if you want it, e-mail me at blessedbyd@gmail.com. You will gain your confidence and your child will be all the better for it!

I am truely a novice at this, but a determined novice.  Luckily there are plenty of people out there who have taken this mission on and they are much more knowledgeable than I, so here are some other resources for ya.

http://blenderizeddiet.com/
http://www.foodfortubies.com/  (I like this one)
http://www.facebook.com/#!/pages/Blenderized-Food-For-Tubies/195156907193185  (the above guys facebook account- you can connect with other families who blenderize)

Google: "blenderized diet"... there is so much support out there!!

Happy Blending!!

Yippee for Real Food!

I know I have talked at nauseum about how real people deserve real food, but I think about it so much these days I believe it's becoming my new crusade.  I am picturing in my head food for g-tube fed people with complete nutrition, ready to eat (though the g-tube).  Like baby food on steroids, only fresher, better.  A REAL alternative to formula from pharmaceutical companies.  Hmmm....  (and just to clarify, I'm not talking about babies drinking formula, I am talking about 5 year olds, 15 year olds, 50 year olds getting their nutrition solely from formula... believe it, it happens.  In fact, it's the norm.)

Anywho, yesterday I made sweet Dominic spinach, broccoli, green beans, apples, pears, and red bell pepper.  We got the OK from his GI doctor to start introducing foods with sucrose, hence the apples and pears.  I use as many organic ingredients as I can (Costco is great for this) because sweet man is having enough issues without introducing all those pesticides.  I roast everything I can because it makes it taste better, in case he burps it up, and steam the rest.  Here's some pictures from yesterday...

I freeze the baby food until it's ready to eat to keep it fresh

Naughty man likes to grab at his tube... and often makes a mess when he pulls it out

"Stop taking pictures mom!"

Yeah for Real Food!

We have started Dominic on real food... well, jarred baby food, but real all the same.  This may seem like no big deal to all you momma's out there, but to a momma with a kid who's dependent on a g-button for all of his nutrition, this is almost unheard of.  Like I have said before, the doctors and dieticians like for these kids to stay on formula their whole lives because it is easy to administer through the g-button and they can calculate exactly the nutrition they are getting in a 24 hour period, and quite frankly, it's so easy a monkey could do it (administering it). They underestimate the parents of special needs children, who mostly would do anything, regardless of the difficulty, if it would benefit their child (speaking of the time consuming task of measuring, cooking, blending, and storing real food).

I have heard countless mothers say their child completely changed when they started getting real food.  Duh.  I'll try not to get started on the whole "real people deserve real food" thing... but let me just say this one thing: feeding a child who will never be a "productive" part of society real food rather than formula their whole lives affirms their inate goodness as a child of God and their dignity as a human person.  You are saying that this person, despite their handicapp's, deserves the very best care.  I not only say "despite his handicapp's," but more completely because of his handicapps that it is so important that I help people see his true value in this world.  People are not expendable, and should not be treated as such.  Heck, even dogs get food that has some resemblance of real food (though processed). Whooooo, I'm getting hot about this, I better stop.... As for Dominic, he's a real boy so he'll eat real food (however it gets in!).

Our Vita Mix is on it's way (douple yippee!!!!!) so until the day I can concauct all sorts of wonderful things, we are starting with jarred stage 1 baby food.  So far he has had green beans and squash through the g-button (10 mls 3 x day) and even some by mouth (he passed his swallow study, it's just all coordination now).  Here are some pictures of his very first green beans via g-button!

Thanks, but...

How do you say you are so thankful for something while at the same time being so tired of that same thing?  I consider it such a grace given by God to be able to pump and feed Dominic exclusively breastmilk from birth, especially seeing as he takes zero by mouth.  I know this is such a gift... But can I just say how tired I am of it?  It's like I praise God with one side of my mouth while the other side complains.  Thank you, but I am so tired of pumping.  Thank you, but it never stops hurting.  Thank you because his little brain needs it, but I just want myself back.  Thank you, wish I could make a little more.  I am thankful for God's mercy... surely he pardons his unthankful daughter, right?

And on the topic I am obsessed with food.  Not for me, but for him.  I have just decided that until I can find a dietician that will be more helpful to me, I will learn everything there is to know about making my own homemade food that goes through his g-button.  I have been a Goggle-crazy momma.  I have e-mailed a dietician in Arizona asking if she would do a phone consultation.  We have turned in our medical discount form for our Vitamix.  I have found all I can on low sucrose veggies.  I am determined that he will eat real food. 

I don't really know how to end this because you see our nurse didn't come last night so I'm running on about 1 hour total of sleep.  Our day nurse just arrived so off to bed for me for a bit.

In Jesus and Mary,
Chasity