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.)
Reide
Easter pictures 2011
Thursday, June 23, 2011
Monday, April 11, 2011
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-
Thursday, January 6, 2011
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
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
Sunday, January 2, 2011
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!
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!
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