In honor of a friend I never met

So just  a quick post in honor of a friend I never met but who changed my life and the life of my daughter.  When looking for a way, ANY WAY, to feed my baby and have her "tolerate" her feeds, I found the Blenderized Diet Yahoo Group.  It gave me the information and more importantly to feed Reide REAL food.  It was the beginning of the end for Reide's need to be tube fed.  Anyway, my friend, Eric, is a middle-aged man who lives in Austrailia and tubefeeds himself as a result of a debilitating illness that has been slowly killing him.  I just got done reading his latest couple of blogs and have finally stopped crying long enough to type this.  He is dying quickly now and will not be here much longer.  He is facing his pain and eventual death bravely and continues to help tubers when he can manage his pain long enough to type.  Anyway.  My heart is heavy for he and his wife tonight.  I'm fairly certain he isn't a Christian and isn't saved which makes my heart break even more.  This man has touched so many of us "tube moms" and has given unbelievable amounts of time and energy into making REAL food for tubies a possiblility.  His dedication is unmatched and likely never will be matched.

So to my friend, Eric, thank you.  You'll NEVER know what you did for my family, for my baby.  I am eternally grateful.

(Eric subsequently started BlenderizedDiet.net and a FB group for Blenderized Diet Tubies.)

What are we waiting on?

The situation: 

Her former pedi said about 2 months of not using the tube and we'd evaluate her weight then. 

Her GI said 3 months of not using the tube and that she needed all measurements to be between the 5th-10th percentile or better.  If you do the average of the three (weight, height and hc), she'd be at about the 25th percentile overall.  

Her Occupational Therapist gave us the go-ahead a month ago.

 I'm taking her to her new pedi today to get her take on things.  We'd seen this doctor (Dr. Atchison) before (when Reide was 10mo) and she was the FIRST one to be aggressive with Reide's reflux.  She understood retching, she understood the lingo we were using and she GOT IT.  So, we're going back to her, for good.  The only thing "outstanding" as far a we're concerned, is if Reide does or does not have a pancreatic enzyme insufficiency (which may be affecting her breakdown and subsequent absorption of food).  Her stool study for this condition is in-progress and will take 10 days to get the results.

Our argument:

We began Reide's wean December 18, 2010 and she's been doing wonderfully!  She's down to the 3rd percentile (from the 8th) but is staying on her height curve (25th) and is staying on her head circumference curve (95th).  She eats all the time and eats a decent variety.  The relationship between her and food is still developing and improving but will take some time.  We've not used her tube for anything (not for meds, food, water, NOTHING) since March 1 and before that, we'd only been using it for only meds for a month because it was convenient.   We're READY for the Tube-pulling Party!  While overall, her weight is still waxing and waning, she's not going to quit eating and we're not going to tube feed her....that's the bottom line.  So what are we waiting on???

From all my years managing a pediatric practice, I've seen MANY, MANY children small like Reide and NONE of them have a feeding tube.  Actually, when I started to dig into some of their medical records, their diet, growth, development weren't even discussed or documented.  It's crazy to see that everyone else gets treated like it's "no big deal" but with us, we're made to wait.  What if she had NO TUBE, what if she NEVER HAD A TUBE, what would they say or do????  Half of her doctors were on the fence about whether she NEEDED a feeding tube to BEGIN WITH!!!!  ARGH ARGH ARGH!

It's a very frustrating place to be.  Are we waiting on someone's permission?  And if so, who's permission are we waiting on?  Is someone going to call CPS if we pull her feeding tube??? IS THIS UP TO US TO DECIDE???  Oh my gosh, so frustrating to think about and even more frustrating to type/write.

*************************************************************************************************************

Ok, so that's that.  We'll hopefully know a lot more later this afternoon.  On a closing note, I'm really super lame for not posting more often.  I've written blogs in my head once a week but haven't taken the time to actually type them up.  I'm here-by vowing, in writing, in the infinitely public world that is my blog to GET IT TOGETHER!  Haha!  Ok, seriously though....the light bulb is finally back on in my head and now I'm going to start acting like it.

Wishing you all love and light-

I praised Him in the Storm

I had lots of thoughts today that I don't just want to get lost in my "thought heaven" as most of my thoughts do.....ha, yes, you're lucky, I don't write or SAY everything I think!

Then and Now, Now and Then....there's lots of comparing going on in my mind and in our conversations these days.

Then:  I glanced constantly and frantically into the back seat to check if Reide was retching or had vomited and was choking on it or DEAR GOD, was she finally going to fall to sleep?....
Now:  I glance in the back seat to see a happy baby signing for "more" and I happily hand her another puff or melt.

Then:  We spent our evenings washing feed storage bottles, washing feeding extensions, washing syringes, calculating intake, calculating calories, making lists of what doctors to call and what we needed from who.
Now:  After quickly loading the days bowls and spoons into the dishwasher, we spend our evenings casually surfing the internet, catching up on TiVo shows, talking about vacations, houses, progress.....OMG, did I just say we spend time TALKING, yes, I did.  How nice to have some normalcy!

Then:  We cleaned up puke multiple times a day or cleaned up spillage from venting during a retching episode.
Now:  We clean up food  bits and sippy cup drips.

Then:  We spent 2 hours every 3 nights making blends.  Very meticulous, very time consuming, very precise, very messy.  (But the blends were part of the key to our weaning success.)
Now:  We spend a couple of minutes getting Reide's real food ready for daycare tomorrow.

Then:  We got reports from Reide's teachers on "how she tolerated her feeds".
Now:  We get "how she ate today" reports.  (And todays report included that I didn't send ENOUGH food for her....she ate everything I sent and more!)

Then:  I cried in the car on the way to work because I'd left Reide at school when I knew feeds weren't going well and she needed her Mommy.
Now:  I leave Reide in the feeding table at school eating mandarin oranges and listen to music on the way to work.

I could go on and on, but I'll save you from myself.  :-)  I praised Him in the storm of our lives and I gave thanks and praise for the little girl that God gave to us and likewise, I thanked him for giving us to her.  There were times when my ears literally hurt from trying to hear the whisper of hope that I knew was there; family turning against us, talking behind our backs and friends abandoning us was so loud but the whisper, it was always there.  Hindsight has been no clearer than as we were in the trenches and I know who that clarity came from.  The peace of knowing that we weren't walking alone but that for every one of our footprints, there was one of His beside us and for certain, like on June 15, 2010, times where there was only one set of footprints because we were being carried.  I praised Him in the storm and He gave me clarity, peace, determination and now, appreciation.  For the rest of our lives, we will be part of a small, scarce community of tubers whose best resource is each other but our best guide continues to be God to whom I'm so very grateful for the Now and the Then.


 Praise You in the Storm by Casting Crowns:

I was sure by now,God, that You would have reached down 
and wiped our tears away, 
stepped in and saved the day. 
But once again, I say amen 
and it's still raining 
as the thunder rolls 
I barely hear You whisper through the rain, 
"I'm with you"
and as Your mercy falls 
I raise my hands and praise 
the God who gives and takes away. 

Chorus: 
And I'll praise you in this storm 
and I will lift my hands 
for You are who You are 
no matter where I am 
and every tear I've cried 
You hold in your hand 
You never left my side 
and though my heart is torn 
I will praise You in this storm 

I remember when I stumbled in the wind 
You heard my cry to You
and raised me up again 
my strength is almost gone how can I carry on 
if I can't find You 
and as the thunder rolls 
I barely hear You whisper through the rain 
"I'm with you"
and as Your mercy falls 
I raise my hands and praise 
the God who gives and takes away 

Chorus 

I lift my eyes onto the hills 
where does my help come from? 
My help comes from the Lord, the maker of heaven and earth 
I lift my eyes onto the hills 
where does my help come from? 
My help comes from the Lord, the maker of heaven and earth 

Overcome

At this moment, having just shot Reide's Prevacid into her little sleeping body, I am overcome with joy, happiness, peace, humility, thankfulness, pride and praise!  I am so lucky to be Reide's mom.  I found a little "dustable" (as my sister would call it) when I was Christmas shopping a few weeks ago and decided to keep it for myself.  It reads, "Being a mother is a holy privilege."; I couldn't agree more.  It is truly my privilege to be Reide's mother.  I am so proud of her right now!  I am so proud that she's such a strong, little girl who is going out on a limb and trusting food.  She is trusting us and we are trusting that she will eat and drink what she needs.  I made one batch of her blenderized diet tonight and it will last all week, easily, as opposed to two batches lasting three days like it used to be....before she became an eating machine!  No really, there are times during the day that she eats like crazy, then other "meals" that she tells me "DOWN" within minutes of getting into the chair.  I guess we're both still learning this "eating baby" thing.   I've actually not tube fed her in over 10 days.....Brock feeds her the only tube feed she receives, at 10pm each night.  We've also stopped all supplemental Pedialyte at naps and bedtime.  So, with one small exception, Reide is doing this all on her own!  My brave, beautiful baby!  I cannot imagine, honestly, how foreign this all is to her.  Until ten days ago, Reide had not truly eaten anything by her mouth for more than 1/2 her life and now she's more than sustaining herself.  In fact, I weighed her today and she's GAINED 7oz in 4 days!  GO BABY GO!  Wow!  SO stunned by how far she's come so very quickly!

So everyones question it seems is, "When will you take the tube out?"  And that's quickly followed by, "Oh wait, what do you do when it's time?"  When it's time, we merely deflate the internal balloon on the tube, just as we do every three months when we switch her tube out and we pull it out and put a bandaid over the hole.  Within four hours, the internal tract (between her outer skin and the inside of her stomach) will close.  I know, WOW, four hours????  Yes, I guess it's God's way of saying, "Hey, that ain't right." We figure we'll have to do it at night before bed because otherwise her stomach juices will pour freely out of it and anything she eats or drinks would come right out.  So, then the harder question to answer, WHEN will we pull the tube?  When Reide's weight is on a consistent upward trend, we'll gradually stop her only tube feed, then if she continues gaining, we'll wean her off the appetite stimulant and by that time, we'll have likely seen what she'll do with a stomach virus or two and a serious cold or two.  If through sickness and health, good times and bad, better and worse, she continues to eat and drink enough to sustain/gain, we'll pull the tube.  Brock and I have talked and feel no pressure to pull the tube by any timeframe.  We'll pull it when it's right for us and most importantly, right for Reide.  Afterall, she's the one who underwent not one, but two back-to-back surgeries to have it put in and it's up to us to make sure she's ready when we pull it.  But trust me.....ohhhh trust me....it will be a glorious day, THE MOST GLORIOUS DAY, the day we pull it.  Just knowing that is now a possibility is such an awesome thought!

Happy New Year Everyone!  It's gonna be an unbelievable year for the Oakes', as we watch our Peanut do the impossible!  We are SO overcome with happiness about the possibilities that await us now!

Wean days 8-11: Just keep swimming

Thank you Brett, Francesca's mom, from www.FranklyFrankie.com for the Finding Nemo quote, "Just keep swimming."  Very wise words from Dorie and very wise tube wean words, for sure.  We definitely don't know our way through the trenches of tube weaning, but we're going to "just keep swimming" and I know that we'll find just what we're looking for in the end.  We're being inspired and guided by Brett, Jenny (mom to Heath at www.thecrunchandthesmooth.com), Olga (mom to Zander) and Cassie (mom to Finn and Pax).  ALL of these moms have weaned their tube fed child months and years ago, but continue to "hang out" on the online support groups, websites and blogs, motivating and encouraging current tube moms.  So THANK YOU ALL!  When I start to let me mind get the best of me, I get an email, blog comment or FB comment that reminds me of what is possible and that we're doing the right thing.

Since my last update, Reide has continued to make some real progress.   For the most part, we're sticking with foods that are tried and true.  Her Like List is:  Campbells Vegetable Beef Soup, Campbells Chicken Noodle, green beans, Easy Mac, pickles, rice and gravy, american cheese, green bean casserole, most Gerber Graduate meals, puffs, and yogurt melts.  We're offering oatmeal in the mornings which she does about 8-10 bites of, but she seems to dislike the unpredictable consistency and starts to spit out the tiny pieces of oatmeal that aren't softened.  Strawberries have been hit or miss but canned pears are normally a hit in small doses.  On the Try List is:  broccoli w/ cheese sauce, stuffing, icecream, peanut butter, raisins, dried fruit, avocado and ranch dressing.  My new project is concocting new ways to add calories and fats to her Like List using oils, fruit nectars, cream soups, 1/2 and 1/2, brown sugar and syrup.

Reide got her routine weight check on Sunday evening and had lost another 3oz.  She's down to 19lb, 4oz which means she'd lost 12oz since beginning her wean 9 days prior.  Her pedi is comfortable with a 5% total weight loss, which is 1 lb and we're not there quite yet.  Most weans (Graz included) use 10% as the "break point" for needing to intervene.  If she continues to lose, we'll look at doing an extra tube feed at night, but for now, we're living, breathing, sleeping and playing FOOD.

Christmas was SO much fun and Reide wanted to eat nearly all day!  She got a Radio Flyer wagon, Pottery Barn chair, play tent with tunnel, Fridge Farm and some other here's and there's.   I'm sure Christmases just get better and better as they get older!

>>>Warning:  Soap Box below....skip to next paragraph if you're short on time or bored with daycare griping.<<<

My new apprehension (if you know me, you know I always have one) is sending Reide back to daycare on Monday.  She'll be in her same room with the same teachers she's had for months now and they'll be THRILLED with her progress and I'm sure thrilled that they don't have to tube feed her twice a day, which had to be a pain in the butt for them......It's a pain in the butt for us and we don't have 4 other kids to keep up with, feed, change, nap, etc.  Reide's new meds schedule requires that she receive two meds during the school day and being that she wasn't getting the ONE med she was supposed to be getting before we started the wean, I'm doubtful that TWO meds are going to be administered.  **Big giant deep sigh**  If it were seizure meds, or diabetes meds or heart meds, would they remember to give them?  Yes, they would.  But a appetite stimulant and reflux med???  I'm sure I already know the answer....."Yes, we're giving her meds."  Then we can't figure out how we've run out of the same meds TWICE at home and they've not asked for more....then we ask to see the bottle and it's half full.  Hmmmm.....you do the math, if its a 60ml bottle of Zantac and she's supposed to get 2mls before lunch, then it should last 30 days, right?  NOT 4 MONTHS and still be 1/2 full!  Very aggravating.  Their reasoning was that the medicine was "old" because the date on the bottle said "August 18, 2010" as the fill date.  My pharmacist husband told her, "Ma'am, I've got liquids on my shelves at work that are good for years!  Yes, the medicine is STILL GOOD."  Once again, it's the inability of most people to see Reide's feeding disorder as a Special Need.  So that being said, Reide is eating anywhere from every 1.5hours to every 3 hours.  The normal school schedule has lunch at 11ish and snack at 2.  She will basicially want to eat twice as often as what is currently available and I'd bet my life there is no staff available to take Reide to the cafeteria to eat in between scheduled mealtimes.  Finally, her school is chomping at the bit to move her to the next room.  Developmentally, she needs to move because she's smart as a whip and bored to death in her current room.  However, it's been made very clear to us that the children in the next room, "walk to the cafeteria, eat at a kid sized table, use utensils and drink from an open cup".  The only one of these Reide may do is walk to the cafeteria.  Other than that she's NOT going to sit still at a kid sized table, she's NOT going to use utensils (she doesn't know how to yet) and they'll regret giving her an open cup to drink from.  I could go on and on and on, but I won't.  Noone has offered us any modifications that would be available so that Reide could succeed in the next room.  ok, ok, ok, ok.......Soap box is officially over.

Even regarding the soap box, we'll just keep swimming.  The progress we've already seen clearly demonstrates that we're swimming in the right direction.  Our little tadpole is huffing and puffing, tasting and sipping her way to success.  As her mommy, I'm so thrilled with our new normal.  I'm trusting Reide more and more everyday and I'm healing from the past year with every bite she takes.

I'm hoping to upload videos with the next blog.

Happy New Year everyone!

Leslie

Wean Days 5-7: A glimpse

Hooray!!!  Day 5 was the day Reide really started swallowing some food.  At the park, she reached her hand into the Yogurt Melts bag and pulled one out.  I looked away for a second then looked back and asked my friend, where did that Yogurt Melt go?  She said, "I don't know, it's not on the ground."  Then I looked at Reide who had drool pouring from her mouth and low and behold she had the whole thing in her mouth and ate (swallowed) the whole thing!  That was pretty much the start of some really positive changes.  Reide's daddy was home with her on Wednesday while I went to work.  He tried some vegetable beef soup with her and she loved it!  Instead of the play by play, the overall summary is that Reide has been in her highchair eating 7 times a day for days 5 and 6 and already today (Day 7) she has been in her highchair 4 times....and it's only 10:08am.  She's routinely doing well with mac-n-cheese, vegetable beef soup, chicken noodle soup, pickles, yogurt melts, puffs, green beans and most Gerber Graduate meals.   She's not eating nearly enough and drinking (only water at this point) even less but it's a start.  Never did I think we'd be where we are this morning.  When I weighed her yesterday, on Day 6, she'd lost another 4 ounces bringing her total to 9 ounces lost since starting the wean.   That's really not too bad, considering.  We've somewhat developed a successful pattern of spoonfeeding her soup, or whatever the spoon-fed item is at that particular time then letting her finger-feed herself other foods after that.  We are still feeding Reide 6oz of her blenderized diet through her g-tube at 10pm and doing about 8oz of Pedialyte every 24 hours, and all her meds are going through her tube still.

So that was the quick and dirty of it all.

For us, as Reide's mom and dad who have worried constantly about this process for some time now, it's almost surreal to see our little girl willingly take bites from us and then in-turn finger feed herself.  We sit and watch in a stunned silence as the other feeds her or as she feeds herself.  We laugh a nervous laugh when she finishes the serving we've prepared for her and the "mental gymnastics" have certainly not stopped.  But it's a new kind of "mental gymnastics".  Instead of planning our next 4 hours based on her tube feed, we're organizing the refrigerator and double checking the pantry to be sure we've got enough choices on-hand.  We are still bound to the clock for meds, sneaking pedialyte in while she's napping and notating amount of time spent in the highchair and how long since her last "meal".  But we're definitely getting a glimpse into how much simpler life is with an orally eating baby.   The last few evenings haven't been spent washing tons of extension sets, syringes, feed bottles and bolus sets but instead, loading the sippy cups and baby bowls and baby plates into the dishwasher.  The clock is still our guide at night:  8pm - 3oz pedialyte, 9pm - Prevacid, 10pm - 6oz feed; but I cannot imagine when Christmas is over and we're not busy with lists, wrapping, cooking, decorating, etc.  what life will be like.  Will we actually get to watch the Netflix movie that's been on our table since August?  Or maybe I'll even get to scrapbook?!  The possibilities are endless!!

I realize what a long road Reide still has before her.  Luckily, patience is something we've been taught over the last year.  There are still a lot of unanswered questions and too many unknowns but they are questions that only Reide can answer and unknowns that only she will reveal as time goes on.  Unfortunately, I have this uneasy feeling that all of this is a "fluke"and I'm almost waiting for the "one step back" that has so often followed Reide's two steps forward.  In the meantime, I am going to try not to overthink it and instead,  rejoice in the progress that she has made in only a weeks time.  I can't help but wonder what the next week will hold.....

Last Christmas Eve was so very different.  I was a new mom to a nearly two-month old little girl who screamed in inconsolable pain and discomfort.  We felt lost and helpless and desperate in a way only parents can feel.  My wonderful, patient husband and I have seen the worst of each other over the past year, but we both seem to be walking to the beat of a new drum this Christmas Eve.  We are confident, resourceful and loving parents to a beautiful, happy, energetic, eating toddler.    We've fought all the battles up to this point but we realize that this battle is Reide's and we are giving her all the resources she needs to win.

So, from this happy and hopeful Mommy, Merry Christmas !

Wean Day 4: Even the children in Africa.....

Wean Day 4 started similarly to the previous 3.  Reide had her 7:30am feed, which by the written Wean Plan would be her last for the day.  We had a doctors appointment at 8:30a which revealed she has fluid on her right ear and needs to see PT for her torticollis.  Aka:  nothing the doctor nor I am immediately concerned about.  Oh and her stoma (which used to be beautiful but has been nasty since her last button change) is "fine" and we shouldn't do anything to it.  Easy enough.


So Reide's oral attempts today were much better than yesterday.  Again, she tasted EVERYTHING  and today, actually swallowed some.  At lunch and dinner, she swallowed about 10-15 pieces of Mac-n-cheese, ate about 10 Yogurt Melts and  about 10 Gerber Crunchies over the course of the afternoon-evening.  She drank very little of anything.  If I had to estimate, I'd say she drank about 3 oz combined between my drinks and her multiple cups that are scattered everywhere.  At dinner when it took her over 20 minutes of squirming in the highchair to settle down and take the first bite of mac-n-cheese, I told her the story my dad used to tell us when we didn't want our food....it was a joke, really.  But he used to tell us that "even the starving children in Africa would eat this" and that we should be ashamed of ourselves for wasting so much food.  The story did no good.  She threw her sippy cup at me and looked at me like I was crazy.  Oh well, I tried.  It didn't work on us as kids either, so maybe the starving kids story should just be forgotten now.

All in all, Reide didn't eat enough or drink enough today to keep a bird alive.  Dark circles are starting to show under her eyes and her energy level (although still exhaustingly high) is obviously declining.  For these reasons we will continue to give her 10pm feed to her although the plan called for it to be nixed tonight.  We will also continue 8+oz of pedialyte over the night to keep her safely hydrated.  Brock and I have decided that if Reide's eating doesn't pick up significantly tomorrow that we'll switch appetite stimulant medications, from Periactin to Megace.  Periactin, we've used before with no real success but the GI wanted us to start there.  The Megace isn't typically used in children, least of all a 13month old, but is typically used in cancer patients who have lost their appetite bc of chemo, etc.  But we'll switch meds if tomorrows eating merits a change.

Brock will be home alone with Reide tomorrow and I'll be at work.  So pray for Brock, pray for Reide to eat and pray for me not to go crazy not having complete control over it all!  (When am I going to learn?) Amazingly, Reide's demeanor remains pretty good.  She's getting a little clingier and as I said her energy level is declining, but overall, she's doing really well with her mood.  It's astonishing how very little food she's had over the last 48 hours and yet she continues to be our smiley, happy, energetic baby.  God is good, all the time.

Please keep sending your positive thoughts and prayers our way!

Until tomorrow night, Good night!