Persistence and Faith

img_3868Persistence is the word of the year. Or lifetime? I don’t know, but it’s a word I’m hanging onto right now.

At the beginning of July 2016, we visited with River’s GI, Dr. P, and we all made the decision together to start another wean. We had been working really hard for a long time to get a good healthy weight onto her, and it was finally showing. She had “skyrocketed” up to about the 13th percentile, after hanging out at the 10th for many years. The 10th percentile is her norm, and it’s not concerning for her to be at the 10th, so going up to the 13th may or may not be her norm, but we had some good wiggle room!

We are now in the 4th month of this trial wean. I still consider it a trial because we just never know when it’s going to be time to bring it to end and go back to tube feedings. In the midst of these last four months I’ve seen her weight continually and gradually go down, and it’s heartbreaking and difficult to see. Everyday I fret over her food, try and add sneaky extra calories to anything she eats if possible. She’s on a large amount of grains and dairy and fat, which is also very frustrating and disheartening. But it’s what she likes, will eat, and is high in calories. Not too mention the sugar! She gets stuff like ice cream almost everyday.

It feels counterintuitive, and it feels just plain wrong at times. Especially as I stand by, eat my vegetables and quinoa, as she either goes to town or picks disdainfully at her creamy food. I’m a vegetarian, and she likes meat. The RD wants me to give her more meat! River likes things likes ham and bacon. They say it adds calories and iron. Some days I feel like everything I do for her is just wrong. Like I’m failing her over and over again. It goes against my beliefs about food and nutrition. It goes against everything I’ve been taught about healthy eating. I’m bombarded daily with information. Don’t eat meat, don’t eat dairy, do eat vegan proteins, do eat all the vegetables except the starchy ones, do eat clean, do eat organic, don’t eat saturated fats, do eat unsaturated fats, get vitamins from your food not from supplements, don’t forget your probiotics, etc… I have a very “hate” relationship with food, let’s just put it that way. I’m sure many tubie parents out there could agree to that sentiment. Feeding therapy, registered dietitians, everyone and their dog’s advice, and just cultural and popular beliefs about food, will completely run you amok till you don’t know what the hell to do anymore. I have a sense I need to change my relationship with food here.

Some days she eats like a champ! So what do we do? We usually try and replicate the same foods the next day, or spend gobs of money on those things and try to feed them to her again, all the time. It backfires generally. One day she inhales alfredo, the next day picks at it. One day asks for and inhales peanut butter with apples, the next day acts as if that was never something she liked! Ok ok, that’s probably a typical 6 year old kid thing. But it really messes with her weight progress. It changes day to day what she is willing to eat, and how much.

This, and her insomnia, finally drove us to a child psychologist. So we struggle most days with her eating. We struggle just as hard with her sleeping. Her sleep, as it’s always been, has been nothing less than torturous for us parents. I was spending hours in the evening to get her to sleep, then I’d go right to bed after her, to always be awoken in the middle of the night, every single night. (Side note: If I don’t wake up ass early in the morning I never get a minute of the day without my kids, so I suggest, even if it’s hard, wake up early to escape your kidlets even if it’s just for a little bit.) Not to mention my poor husband who has to get up even earlier than me to go to work. He’s basically a zombie and coffee addict. He, unfortunately, cannot sleep through any of this, and has some level of insomnia himself.

So onto the psychologist. Who is wonderful btw!! I can’t believe we hadn’t seen one sooner. Like really. Go see one if you think it’ll help your family and your kiddo’s progress. Anyway he gave us basically two plans to start with. A new bedtime routine, and an eating routine.

img_3883Sleeping plan goes like this: it’s called the “Check-in” method or something. You take your kiddo to bed, at a set time, every night. You put them to bed in a short simple manner, for us that’s one book downstairs with everyone, one book upstairs in bed, then a short and sweet back rub or quick kid’s meditation(with some Reiki from me as well). Also part of the plan, Dad must participate, according to the doc, we had to get her off her reliance on me, and bring Dad back into the mix. He puts her to bed several nights a week. Then the crucial part: you do the check-ins at regular, reliable intervals. We started with 2-3 minutes when she was frantic, when she was relaxed 5-6 minutes. At first sometimes we had to hover just on the stairs to her bedroom because she would scream and cry and try to come downstairs. So we would have to go right in, soothe her, and try to leave as quick as we could. I had to keep a log of this, every night, to see our progress. The first week was hell, not gonna lie. She screamed and cried and fought this hard. She rarely left her room, but would try and make a huge racket to get us back in.The Doc said totally normal to experience this. We try and be as “peaceful parenting” as possible, and this was hard for all of us. We just had to reassure her and show her we were sticking with the plan. We constantly praised her if she was remaining calm during those times. We did no rewards or sticker charts or anything, those methods have never worked for her. After about 5 days she began getting it. She started calming down and patiently waiting for us during check ins. Check-ins have to be a max. of 1 minute.

My vision board for bedtime!
My vision board for bedtime!

We’ve been going at this over a month now. We’ve managed to progress with her participation. She “participates”. She waits calmly, and is learning to fall asleep without our presence in the room. BUT we still haven’t succeeded in it translating to truly know how to fall asleep. She still takes an hour most nights to finally fall asleep. With me or my hubby walking our aching knees up and down the stairs, back and forth, back and forth. The doc told us “studies show” that this is successful when the child can drift off to sleep within 10-20 minutes of being “put to bed”. Well I’ll believe it when I see it. I’m almost at tearing my hair out stage with this. But this is still better than what we were doing before….sacrificing my sanity and self by laying with her for that long hour and coaxing her to sleep. Now my son and I watch Doctor Who during this hour, and I just miss out on bits and pieces during my check-ins!! Much better! But still frustrating because I feel as if I’ve been trying to teach her to sleep for 6.5 years. SOOOOO the clincher on this is that it’s supposed to translate to the middle of the night insomnia, and it hasn’t and it won’t, until we reach that 10-20 minute drift off after bedtime milestone. We still all suffer from River’s insomnia. The insomnia is “supposed” to get better when she truly learns to fall asleep on her own. When will that happen?????????? I can’t wait for us all to have a new joyful relationship with sleep here.

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Examples of my logs

Eating plan: a strict every two hours of eating, no snacking in between. So we start at 10 am and go every two hours with food. Snack or meal. Just every two hours. When we’ve followed this she does eat more in a day. I also charted this for 3 weeks to see it work or not work. It seemed to prove very useful. He also gave us a bunch of other suggestions about letting her choose her portions, not overwhelming her with large portions – wait for her to ask for more, and helping her listen to her body signals especially if she asks for food between times, and we tell her she must wait to eat, hoping for her to build her hunger. This is all generally to get her more responsive and knowledgable about her hunger signals. Sticking to this strict schedule has proven to be difficult. I try and bring snacks when we leave the house and only feed her at the right times. Some days get completely out of hand and the schedule gets lost. When this happens I can see how she doesn’t get enough to eat and how it isn’t helping her hunger signals. Which means I have to be a rigid strict mama when it comes to eating times, and I’m not, being rigid goes against my nature, so it’s a work in progress. Persistence. Everything about this goes against my nature. I have bend and shape myself in order to help my daughter. Again persistence.

Three more weeks and we will be seeing the RD for a check up on the wean. Currently River has reached the 10th percentile (again where she use to live before the 13th), the team was comfortable pursuing the wean because perhaps River’s normal is the 10th. But if we start hitting below that we will be reintroducing some blenderized tube feedings.

These have all been huge and momentous changes in River’s little life. We are all pushing hard to get her grow up. Sometimes I wonder if this is a good thing, or if this is the right time. I trust that it’s the right time for it, but I falter when it comes to seeing her weight decline.

So to end this update: Be positive and have faith(note to self), (insert screaming emoji here) and (insert happy thumbs up emoji with the word “Persistence”).

So it goes, so we continue on. So it is.

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Day in, day out

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I am not a frequent blogger, not anymore. As I ponder why I choose not to update the blog on the daily things or the once in a while things, I wonder where it’s going? I shockingly get 20-40 hits a day, and I’m filled with joy that maybe some of my words or information helps at least one of those seekers in a day. That’s why it’s here! So I thought maybe now would be a good time to just do a post on my reflections, where River is at in her life, and where we are all at.

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Various ingredients of our homemade formula

The typical day with River and her medical conditions have simmered down to low on the burner. She wakes up in the morning, we are currently co-sleeping, and calls for me. I grab my sleepyhead and plop her down next to her brother, who, like me, is already up. They take their time in the morning waking up, usually watching a little morning Minecraft. Then it’s time for breakfast, I can usually only expect a few nibbles from her. Her thirst is strong in the mornings and she’ll at least drink some juice and maybe eat half of whatever I gave her(after coaxing and coaxing). I give her ample time to digest and make certain I can’t expect any more oral eating before giving her the first “tube” of the day.

We currently bolus-feed and she gets about 8 oz. of homemade glorious green goodness formula. As I reported previously, her new formula, laden with whole healthy foods, primarily vegan protein, coconut, and some natural boosters, has improved her immunity. Last winter was very “sick”. Our little girl had like 5 colds over the fall thru spring. By summer all better. Just the warm weather?? I think not, it’s now February and River has had 2 teeny tiny short-lived colds since last May. I feel confident that the super formula I give her plays a large key role in that. It’s boosted with things like turmeric, ACV, grape seed extract, and fresh lemon juice. Not to mention the super foods like kale, spinach, hemp, etc. Oh sure, you say, well we can’t get our non-tube fed kids to consume stuff like that right?!?! I don’t have the answer to that other than just try everything! I try and sneak good stuff into my sons meals, and he does really well also (only 2 very short-lived bugs this year). And when I say short-lived I mean like 2-3 days of light symptoms.

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The day continues and the kids play and explore, read, watch, or go places. See, we homeschool, it makes life a bit slower and lots more flexible. I couldn’t be more grateful that I’ve chosen this for my kids, and I can’t emphasize enough how crucial I think it’s been to keeping River calm, healthy and happy. She experienced about 4 months of preschool at the age of 3. She was sick once for each of those months. She was also miserable there. And the paperwork! I am also so thankful to not have to constantly be in IEP meetings or 504 (or whatever those are for kids with medical exceptions in schools) and all that stuff meetings! I did that for years and years with my son for speech, and there I was going through it again with River for speech and tube-feeding. I love that we homeschool, more specifically unschool, and I can give them this freedom from constant evaluations, stipulations, observations, separations, and other “tions”. I highly recommend this for your tube-fed or CHD children.

River is sensitive. She had a really rough go of it in her first 3 years, not too mention those early crucial first months of life. Those of us with preemies know to expect some form of delay. We’ve had our fair share of “delay”. Speech delay, gross motor delay. Therapies after therapies. Thank God I’ve discovered unschooling. Yes, my daughter has some delays!! SO the Hell What?!? She still wants to smear food around like back in the old feeding therapy days. She can sit for hours with play dough and makes the HUGEST messes! But then there’s these great leaps forward as well with her understanding, her interests, and deep thinking. Unschooling is perfect for my children. They get to stop having to live up to predetermined lines of progress. We all know, you know this, I know this, that most children will eventually “grasp a concept”, but what ages they “grasp” or their brains just reach that stage of development is different for everyone. And as we all know, we know our children best, better than any doctor, teacher, or outside human. River is River, and I’m grateful that she gets to wake up when she’s ready, and I don’t have to take her to school where some other people get to have her all day, take care of her, give her tube feedings and fill out charts on her.

Going to her medical appointments has gone down to a minimum. We see her GI every 4 months. We do tube changes at home. I’ll go in to that a little. River hates to have her tube changed. Her tube is very tight, and it causes her great stress and discomfort to take it out and put one in. So I’ve learned how to do this at home, she still freaks out a bit, but much less than if it’s at the doctor. We bribe her to hold still and not fight us. She absolutely looses it when it comes to these tube changes. But after much gentle coaxing and the promise of any toy at the store the very next day, she’ll hold still. She takes deep breaths through her tears, and Daddy assists in helping her feet and hands from attacking me, for the 30 seconds it takes to switch out her tube. Every 3 months now a new stuffy joins her stuffy family after a tube change. Her fear is so deep and her anxiety so high, that it takes me all of my mommy powers to not cry with her. I have to have(or fake) confidence and no fear in order for her to give us that 30 seconds of trust. Maybe other people just hold their kids down or make nurses and doctors do that, but I won’t put River through one second of further trauma than I have to. If she can’t give us her trust, we wait till the next day, or for however many days it takes to talk her in to voluntarily allowing us to do this.IMG_1625

Back to the day in day out. Lunch rolls around, she usually eats ok at lunch. Dinner rolls around next, and by then it’s been many many hours since her last tube. She typically eats her best at dinner, so we always wait until after dinner to give her final bolus. We could bolus her more than twice in a day, since we give her about 15 oz in a day, but we chose to do it in 2 large boluses as opposed to 3 smaller ones for the ease of it. She can handle the 8 oz. at a time and we are fortunate of that! We give her that final one about an hour before bed time, and the tubes are done until the next day. We use large 140ml syringes for the boluses. We have to use lots of oil spray to lube them up. I use large mason jars to store our formula, which I remake about every three days. There’s always lots of jars, syringes, bolus extensions to wash around here.

We don’t know when our tube-life will be over. We have no idea how many potential heart surgeries or procedures she’ll need when she’s older. But life goes on. Everyday I am blessed she’s right here with me, growing up at her own pace, doing her thang. I also can’t wait for the day my kids are old enough to look back and read these blogs. I’m sure the eye-rolling will be in overabundance. And maybe, just maybe, they’ll also see how deeply I love them, so so much. 

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Being brave

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Summer has been a whirlwind of fun and sun! We’ve enjoyed our warmest summer (ever on record) up here in lovely Washington, with many visits to the beach and forests.

Over the last 6 months River has had her annual pediatric check up, her annual cardiac exam, and another GI and dietician visit. She is now sitting at the 8th percentile, a slippage from recent times. And although it isn’t thrilling to see that happen, her weight is what makes that number drop, what’s a tad more important is that her linear growth is consistent, and it is. As hard as it is to not see her grow by leaps and bounds, seeing that linear bone growth staying hard on it’s chart line at least assures us that she’s staying on Her track, if not going up the other tracks.

IMG_0690As far as her cardiac health is concerned, we are pleased to report we will not be going back to see Dr. P for two more years!! It’s so hard to believe that we’ve been only going once a year for years now, and now down to two years!! Her visit was very uneventful, she was the most cooperative ever, the echo room almost made the parents fall asleep, and that was that! No news is good news at this place! We will see you in two years NWCHC!

Since a run of really bad colds over the winter and spring, finally when May hit and she had another cold, I decided to try adding some serious healthy additives to her blended food. We had to get her immunity stronger! And even though it coincided with the coming of the warmer weather, I can report she has been virus-free since then! I may alter my recipe some more for winter, looking for even more natural supplements to boost her immunity. So far I’m adding in turmeric root, water kefir, apple cider vinegar, ginger root, fresh lemon juice, and always either spinach or kale, black strap molasses, pumpkin seeds, chia seeds, hemp seeds and virgin coconut oil. These on top of a few other necessary foods for an all over picture of nutrition, like some quinoa, an additional protein source, and seasonal veggies. I don’t add fruit, or other foods that we know River will consume on her own. I think I’m going to start including manuka honey, echinacea and garlic as we move towards the cold season.

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I had a long conversation with a really amazing mom recently. She told me about a program in Denver, and Portland, that is a feeding program for tubies. Dr. P wanted me to consider looking into this program, and I got to hear firsthand from this mom all about it. They managed to take her 100% tube feeding son to about 50% tube feeding, which is a huge accomplishment! But I was not thrilled to find out that they spent about 6 weeks in this program. I was not onboard when Dr. P was telling me about it, and I was not onboard when the mom was telling me about it. We tried so hard in the beginning, like SO HARD, so very very hard. And although we made a huge difference in her life, I have become a firm believer in River. River is the force that propels her life, and now at five there is just about nothing we can do to convince her to eat and or drink anymore than she already does. And I’m confident that when she is ready, we will all see this and know it. I am not going to any life-ripping-up programs anymore to see if we can get her off her tube a year or two sooner then she’s ready.

We are not ashamed of having a tube-fed daughter. River is not lesser than any other. She is not more. She is her wonderful self, that fought hard as a baby to get where she is now. And where she is now is where most five year olds are. Enjoying her playtime to the fullest every day. Enjoying tackling her brother, smooshing play dough together, making mud pies, running through the woods. She literally doesn’t have time for that extra bite or drink! She’s too busy! One day, when she’s a little older, she will be ready for the next step. We are following her footsteps in the sand to that day.

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I have made a new piece recently, in honor of River, here is where you can view and purchase it:

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http://www.redbubble.com/people/motribbz/works/15994195-be-brave-heart-warrior

And this piece was finished earlier this year, not sure if I included it before.

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https://tribbill.wordpress.com/2015/04/12/new-work-adoration/

Peace, love, joy

Michelle

Milestone: 5 years old

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It’s time for Five! My daughter turned 5 yesterday, on St. Patrick’s Day. It’s a huge milestone in my eyes. Maybe it was just a birthday for her, or her brother, but as usual my big sappy self says this was a huge day. It’s been 5 years since her birth, a day I can never forget, but would like to sometimes.

Back then I couldn’t even imagine getting to her fifth birthday, not because I couldn’t imagine her surviving, but I just couldn’t see that far ahead, I was only looking to hang on day by day, week by week. Soon it became month by month, now year by year. It’s so wonderful to be beyond that.

We are still here, River still has a portal to her tummy, her g-tube, her life-support. We are ever changing and growing as a family and marching forward into unknown territory with her medical conditions. People occasionally seemed surprised to find out she still relies on her tube, since she eats so well. They are sometimes surprised to hear that her heart surgeries are not over. They may also be surprised to hear that she didn’t walk until the age of two. That she’s been in feeding therapy, occupational therapy, physical therapy, and speech therapy. They might be even shocked to hear that she was delivered via emergency c-section with unknown conditions 2 months early, at 3 and 1/2 pounds. That she survived her first heart surgery at that same weight only 2 weeks old. Her second at 5 months. She’s had spinal surgery, eyelid surgery, and g-tube surgery. She’s a bright little girl with a heart full of joy and dreams. She kicked butt back then, and she still does.

Doctor’s once told me it was my milk that was causing digestion issues, so let’s try some fancy expensive medical formula made mostly out of corn sugar. It really boiled all down to oral aversion. She does not have allergies or digestion issues. But sensory aversion will keep a child from eating. With years of treatment we have a girl that eats and drinks. At five she still doesn’t understand how much she needs to eat to grow on her own. We will get there, we don’t know when, and I’m done with orchestrating any more “trial weans” or “feeding treatments”. We are going to let River decide when her tube comes out. Everything has always been done on River-time, sometimes I wonder if any of the therapies even worked. River, perhaps, got there on her own. We just happened to be in therapy, coincidentally. It’s always been up to her! She’s still just as decisive and head-strong as ever, and I can’t wait to see her continue to grow up!!

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Dear River,

I’m delighted to be your mother. I love you in a way you will only understand when you are a mother. You’ve made me become stronger than I ever thought I could be. You’ve brought me to my absolute lowest moments, my scariest moments. You’ve shown me what life is really about. Your brother taught me how precious life is, you taught me how to fight tooth and nail for it.  You showed me that pain is temporary, that it can be overcome. You are Xena, you are Joan of Arc, you are anything you want to be or can imagine. You are perfect, pretty pretty please don’t you ever ever feel like you’re less than f***ing perfect! I will always fight by your side, as long as you need me to. I may have goals, but you are my purpose. You gave my life more meaning than I thought possible. Together we are invincible!

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Slowly but surely

10th Percentile

We…I say “we” because it is a team effort around here…we are now back at the 10th percentile. Based on charts from the CDC, for our country. I looked at the WHO chart because I’m curious and if she’s at this weight when she turns five she’ll be like in the 18th percentile, from a larger sample of the world. Either way, she’s a little thing. My River, she has had so much growth since I’ve last blogged, developmentally speaking, but almost nothing has changed with her tube feedings. We are content to let her be her, and not push it. But I have decided to take a new approach to feeding her, at least until I can eye ball it, but I will see if there are more creative ways to get a calorie goal down her everyday.

Having just visited the GI today, I have several things to share. First, River weighs in at 32.8 lbs, and we are pretty sure that her sweater accounted for some of that weight 😉 103.5 cm tall, almost 3.5 feet. Second, we discussed our little tubie falling out incident that happened a few weeks ago, and how we installed a Mic-key after that. I’ve been nervous about doing changes at home since we had switched to an AMT mini in the last couple years. River’s gotten highly anxious about tube changes since the AMT as there is more discomfort during the change due to some ridges on it. Once in, an AMT is less bulky and more comfortable than a Mic-key. We discussed my options for changing at home in the future, I feel better about handling it at home since it will cause River less stress. Our wonderful doctor assisted me change it out in the office, and this was the best change since getting the AMT-mini! So, now I will just do them here, and continue to work on relaxing River during this very minor procedure. I’ve been working with the kids on breathing techniques for relaxation, and although they have a hard time getting the hang of it, it really has benefited them during these things.

And lastly, I needed a good set of numbers from the dietician to work with. I really have had no clue as to calorie intake lately, or what maybe she should be aiming at in a day. We’ve gotten too use to just feeling out the day, and continuing the supplemental bolus feeds and seeing her slowly but surely gain weight back to her typical growth curve. So my next adventure will be to see what 1050-1350 calories looks like for River, and what 1250 ml in fluid intake in a day looks like for River, and how that might be accomplished. She still has her slim eating days, and some big binging days. I will explore this avenue again, but with a dose of humility. River never fails to let it be known that she is in control of her body. Her body will show us what it’s capable of. Her stomach will let us know what it can handle, and what it can’t. This is really all River, I’m merely the provider of nourishment. But as we approach the age of five I am seeing hints of discovery in her, signs of understanding of the world around. It won’t be forever, it’s really just around the corner.

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We visited the CHD Awareness tree at Mary Bridge placed by the Mended Little Hearts group. We were unable to participate this year but it’s great to know that it’s there! I love visiting River’s little chubby baby face that hangs on it.

Our lives have shifted a lot in the last 6 months, and we’ve found a new direction to take our family in, and it’s unschooling. This blog was not intended to be about unschooling, or homeschooling, or whatever food I’m baking is. So I won’t go into it much! But I am thrilled to be able to spend much of my time taking my kids on this new journey, and focusing our lives on our personal and educational growth, and the tiny every day things that make life so worth living. Like this fun episode of The X-files that I happen to be watching out of the corner of my eye. “E.B.E” a classic! #Xfiles2015 (priorities, you know, it’s a trending topic).

I’ve found it hard to attend those Mended Little Hearts meetings, those meetings that I needed so very much in the beginning and I’m so grateful for. There is time for support and then there’s this time that I need right now not focusing on medical conditions and our earlier story. We have stepped back from all speech therapy, physical therapy, occupational therapy, and feeding therapy. As well as the federal early education preschool standardized test form things. We are blissfully enjoying minimal medical intervention. GI every four months, Cardiac once a year, Pediatric once a year. It’s like literally amazing, it’s the freest River’s ever been from medical hassle. River and Ewan have also been free of all contagions since summer, no colds, flus, fevers. We are so grateful and continue to be blessed everyday by just the mere presence of these children.

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Bubbles in the warm, snowless winter of Washington State.
Mad Cat officially displayed!
Mad Cat officially displayed!

Mad Cat with One Ear is now on display at the Museum of Glass, Tacoma, WA. We got the chance, randomly, to visit it on opening day!! Pete’s cousin came to town, we took him there and boom there it was! Even a little blurb about River. Tacoma has a cool art scene, not gonna downplay. It does.

Until next post…

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Getting our archery on

One Mad Cat

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Back in the day….when I had a quick-growing boy, the frustrations and expense of constantly shrinking clothes and shoes was kind of a pain. Perspective is a wonderful thing, and when River starts showing signs of growing out of things I get enormously giddy with excitement! I’m here to announce that River is now a 4T……4T people!!!! I literally can’t wait to go out and shop for some new things! Of course, she has a closet full of things that still fit, especially items that were bought a little too big. I get really gaga over this because it indicates her weight gain and growth!

We recently had our check up with Dr. P, and he was pleased to see her little dot move back up to a more acceptable growth curve. Her current gains have only taken her back up to an 8th percentile, but at this point we consider that her average. Dr. P continues to feel that this is where she wants to sit naturally, and that she looks overall healthy and bright, so he is not pushing us to do anything new. We will continue along her current feeding plan, which consists of 10-15oz of tubed food a day. We had her tube switched out at this appointment, which is the most difficult portion of the visit. She really throws a fit now, and gets very panicked about it hurting. Dr. P was able to finally get a new tube in, but unfortunately we haven’t figured out a non-traumatic way to get River through this. If the newer AMT-minis get easier to change(as their new design is supposed to do) I may try to go back to changing them out in her sleep as I did before, because it was 100% non traumatizing for her! But that was with the Mic-key button, which has a really smooth design, and easy to switch out. The AMT has a ridge that makes it stay in nice and tight(less chance of being accidentally pulled out) but a lot harder to put in. Dr. P said River’s g-tube tract is very healthy and tight, which is good for some reasons, but makes changing extra difficult.

River’s perception of her own g-tube has started to evolve. She is really fascinated with the new glow-in-the-dark version she received. She has some understanding now that we give her food through her “tubie” because it’s helping her to grow, and because she doesn’t eat enough herself. Sometimes we give her a choice, like if it’s just whole milk, water, or formula, going in, to try and drink it instead of having us tube it. Every once in a while she opts to drink it! So we are slowly moving into a zone of comprehension. But when we talk about the future when she might get the tubie removed she seems frightened by this prospect. Her tubie is a part of her, and it’s all she’s known. It’s extremely understandable that she feels this way. We gingerly approach the subject with only positive conversations.

I am still not ready to give her a trial wean again. We are patiently waiting to see how she does day-to-day, and look for signs that she’s ready. With her new found “chubbiness” we can see a time when a trial weaning might be nearing.

I know that many parents find my blog hoping for guidance, or ideas, or hope for their own tube-fed or heart kiddos. I don’t have a lot of advice, I only know what I’ve experienced. But I know that I was convinced that River was going to get her tube out long before we reached the age of 4. I was sure we wouldn’t be one of the ones who had toddlers, or older children, with a g-tube. Not us. No sir-ee. River was going to be one of those who figured it out at the age of 2 and would be among those early tubie-graduates.

I’ve learned that you only take one day at a time. Don’t give yourself unrealistic goals, or put this kind of pressure on yourself or your kid or your family. We went crazy going to therapy after therapy, to the intensive 2-week clinic, and beyond. Yes, we have achieved a lot, River was a baby who couldn’t put anything into her mouth or swallow. Now she eats! We have come so far! Just enjoy the little triumphs, have fun with your baby, love them, they will get there when they are ready. If we keep going forward, one day at a time, one day we will look up and before we know it things will change. Be at peace that your child is doing exactly what they need to be doing. Yes – therapies and clinics and research and effort is key to progression, but don’t drive yourself to misery because your tubie kid isn’t off their tube yet. There are so many more important things, like that they are well fed and growing enough with the help of the tube that their brains can develop, that they can be bigger and stronger to play, that they are happy and surrounded with support and love. One last thing I’ve learned: use real food whenever possible, get a Vitamix, don’t let your baby develop on formula that’s filled to brim with HFCS, sugars, over-processed crap. USE REAL FOOD.

MUSEUM OF GLASS

River recently won a spectacular prize!! Back in March, both the kids made a little drawing while visiting our local Museum of Glass, and entered their Kids Design contest.

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This was her entry, and she was chosen to have her drawing turned into glass art for May 2014. We were invited to attend the session and watch them make it live. River wasn’t exactly thrilled with the whole thing. Ewan really understood what a cool thing this was, and was very excited for his sister. She is very shy, and the whole experience was a bit overwhelming for her. She also confessed to me she didn’t like her drawing anymore. Oh poor baby! She will understand when she’s older, that even though she may not like her drawing anymore, that we all like it, that the artists at the glass museum saw something great in it, and it will be a piece that we will all treasure forever!! As an artist, I get that you don’t often like your own art, it’s totally normal. She’s also 4. 🙂

Here is more pictures of our amazing day at the hot shop! The museum makes two pieces, one for the museum to keep, and one for us.  We will get it in a few weeks!

 

Early stages
Early stages
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This is us clapping at the end!

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Finished piece, still very hot
Finished piece, still very hot

 

Blended Feelings

Yes, I’ve been avoiding you. The blog has always been a place where I can dish about River’s life and spill my guts out all over so I feel better. I, hopefully, have helped a parent or two. But I haven’t wanted to share on the daily humdrum of tube feeding. I can’t deny that I’ve been sad about our slide back to a 50/50 tube feeding lifestyle.  River’s backtrack on by-mouth success over last year had us progressively going back to using the g-tube. We have had such great hope for our daughter’s success at oral eating, but for the time being I believe we have found a balance.

Her percentages fell below her typical curve in January 2014, and we had the GI and the nurses all freaked out about her weight(lack of gain). DH had never seen Dr. P look so distressed by it before. So we added even more calories to her daily tube feedings. Her need for weight at this time outweighs the need to push getting off the tube. She had her four-year checkup recently and she has bumped back up to her curve and the doctor was not concerned about her growth, and believes that River is just a petite little thing and may always be that way. It does give us great pleasure to see the pounds growing on her, she weighed in at 29.4 lbs today, and that is giant news around here, that is a fabulous number!

Now, 3 months later, we continue to tube feed her approx. 12 oz a day of a blenderized diet that we concoct. Since then we’ve also pulled her out of preschool. Preschool did not work out after all, and, since I graduated, there was no need for the day care. She became more and more upset about going to school, and she was not handling well the constant over-smothering by her classmates. Some of this distress may have contributed to her lack of weight gain over the winter.  Chill time has been much needed after a hectic last four years, so we also pulled the plug on speech therapy(especially since her speech has grown by leaps and bounds), and will return to that at another time. We believe that her weight gain has been in response to us going back to a blenderized diet using a Vitamix. We used this method to feed her before the first attempt at weaning her at 21 months old. We strongly believe that better nutrition(real whole food) has a huge impact on her weight and health. We were told to just start giving her more of the Boost drink she was on, which of course is just filled to the brim with refined ingredients and loads of sugar. Her blender food consists of only whole fresh ingredients.

Sample recipe:

  • 2 cups organic whole cow’s milk
  • 1 cup organic brown rice cooked pasta
  • 1/4 cup flax oil
  • 1/2 cup organic spinach
  • 1/4 cup organic carrots
  • 2 tbs. organic peanut butter
  • 1/4 cup organic hemp protein powder
  • 4 oz. organic whole milk yogurt

This recipe produces a calorie count of 1.7 (which is 1.7 calories per every 1 ml) and makes 925ml (just under 4 cups) and lasts us about 3 days. But most of the time we just wing it. Sometimes we add other things like cooked organic eggs, olive oil, current seasonal vegetables, a banana. She also takes gummy multi-vitamins and fish oil. If River notices us making her blend, she may even have a request for us to put in something she likes, usually it’s apples. We have our next appointment with GI in May, and we will talk about all of the concerns revolving around River’s eating and weight, and to change out her AMT mini(not fun). She is currently eating at every meal and still loves food and drink, and hopefully sometimes she consumes enough bonus calories in the day herself!

❤ Today, River had her annual cardiology check up. It’s such a pleasant office, it’s sights and sounds bring me the opposite of comfort. But going in, I was not that worried, although I’ve had some nagging questions, and one which has been heavy on my heart lately. We took Ewan with us, he said he was interested in seeing River’s heart and I just couldn’t deny such a great learning experience(and a reason to have him with us to keep River happy – which he does a great job at). Ewan was able to escape school for a few hours, and observe an echocardiogram(although he’d been years ago, he doesn’t remember).

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Three thumbs up after only a few shed tears at the ekg.

Everything went great! River’s echo and EKG looked fabulous. Her bicuspid aortic valve and aorta are the primary areas of concern these days, as of today the aortic arch(site of COA repair) looks great with no narrowing, and her valve looks the same as before, the same amount of small leakage is there, but not enough to be a concern. River never has any complaints about breathing, her chest or heart. Finally, it was time for my questions for the year…. First I want my yearly dish about her coronary artery defect, I want to know what the doc thinks about her future with that concern. He explained that a CAT scan will be needed on her heart to get a full three dimensional image and map out the coronary artery and it’s origin, and that will be coming up for her around the age of 10. Then we will all know more about how big of a risk it is in her life and if a repair is in order or not. Ok, Ok, that calmed me a little, it’s still definitely a big “if” and she is just too young to know more.

Now…the question I wasn’t sure I wanted to know the answer to, but it finally dawned on me recently about women with CHD’s and pregnancy. Would or could River carry a baby without endangering her life? I have been fretting and gnawing on this question for months now. Sure, it’s entirely likely some doctor told me 4 years ago this answer and in my trauma-induced state I’ve completely forgotten. Each person with CHD is different, and there is no blanket answer, there is only her individually to assess.

Reluctantly cooperating, being a big brave girl
Reluctantly cooperating, being a big brave girl

My heart froze up for a moment and I braced myself, I couldn’t believe I was willing to go through this with the children in the same room. They would certainly see me lose it if the news was….well….not something I could handle lightly. I owe a huge SIGH OF RELIEF to Dr. Park today, he gave me the answer I was hoping for with all my heart.

Yes. At this time, River’s heart conditions are considered ok for pregnancy. Of course, cardiology would be involved in her pregnancy, monitoring her. It is a possibility in her life, if she wants to, have children. Weeping on and off since I got home, and celebratory enough to finally come crawling back to this blog 🙂

Happy Fourth my little pixie, here are some pictures at her birthday party:

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Her beautiful cake by our dear friend
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Her Hello Kitty/St. Patrick’s Day theme birthday
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Party at the Children’s’ Museum

The end of another year

It’s the last day of the year and I’m finally inspired to write a post, a little catch up on the life of River. Now recently we had a check-in with the dietician back in November, and at that time we had tapered down some of her tube feedings, in hope it would encourage her to eat more at school. Her program, Head Start, provides breakfast and lunch, and of course most of the time River just picks lightly at her food. It would have been counteractive to send her with a full tummy in the mornings. So on that last visit, which was two months after the September visit, she only gained 3 ounces, she was at 27lbs 4oz! ARGGG we said.

Princess Bubblegum and Finn, Halloween 2013
Princess Bubblegum and Finn, Halloween 2013

So at that appointment the dietician recommended we change the formula we’ve been giving, to a higher calorie one. Previously she was on a “1” which is 240 calories per 240 grams, 1 calorie per gram. We have now started giving her Boost Kid Essentials 1.5, which has 360 calories per 240 grams. Her recommendation also was to not necessarily bolus her more formula but to just offer this, and hopefully get 10 ounces into her a day. Well we are lucky if we get around 7-8 ounces in her a day, but we weighed her and she has gained over a pound in the last month!!! She weighs in at 28lbs 7oz (according to our scale)! We were very thrilled by this development and are happy with this new formula. Her oral eating and drinking remains at what is usually is. She eats, she drinks, but if left on her own, doesn’t gain weight. We believe she may have to be on her feeding tube for much longer than we hoped. We still have tentative plans to start another weaning trial in the late spring, probably after her 4th birthday. The plans hinge on weight. If by then we have packed some extra cushion onto her little frame and her growth is on track then we will discuss this with Dr. P.

2013 School Pictures
2013 School Pictures

Whatever!! River is River, and she will do what she wants at her own pace, I’ve come to realize I’m only here to assist, not direct. Preschool is going well. As we suspected, and teacher confirmed, she is definitely shy. She tends to not speak up or talk much during class, but usually enjoys herself and gets along well in the activities(sometimes herded and mothered by many adoring girls, sometimes a little too much). I’m really hoping she’ll open up more next year. She is only 3! She is also the youngest and smallest in class, and is very intimated by all the rambunctious 4 and 5 year olds.

River @ College
River @ College

What River did this fall was help me complete college. Well, she at least helped win over one of my professors! I graduated with my BA in Art this quarter at The Evergreen State College. The last 2.5 years have been a whirlwind and sometimes I can’t even believe that I did it, all the while taking care of this little munchkin. This is where other people came in,  because I certainly didn’t do it on my own! I have to bow down to the excellent assistance provided by my husband, friends, and River’s nanny Patty for all the pick-ups and drop-offs and time and energy spent helping me and my family through this time! Woo Hoo I’m done!!! Onto to the next phase!

Christmas was good for our family, besides the pesky long-living cold River contracted, full of high fevers and buckets of snot. We managed to get up to the snow once, since it refuses to fall down here in the Puget Sound much. Leavenworth was beautiful and exciting, even if overwhelming in it’s crowd size! River’s favorite gifts this year? A fairy puzzle, a calico critter car, and some of those cute stuffed animals that come in purses. Not too mention the gobs of Hello Kitty clothes and books, she still loves good old HK.

Her speech is coming along well, she has added many more words to her daily vocabulary, even if they are still hard to understand. She wants to be understood and tries her best! I’m starting to think though that a dx of apraxia is not that far-fetched. Not that it makes a difference in treatment, she receives the necessary speech therapy, regardless of dx! And I have heard of other cases of siblings both having Apraxia. So with age 4 around the corner, and listening to other toddlers much younger than her speak so clearly, I am truly wondering if Apraxia isn’t the culprit.

I love my children, they, so cliche, complete me! Apraxia, feeding tubes, surgeries oh my! can’t stop us. Those do not define us, what defines us is how we deal with them and how we continue along on our journey.

Sledding in Leavenworth, WA. 12/21/13
Sledding in Leavenworth, WA. 12/21/13
Crazed kids on Christmas Eve
Crazed kids on Christmas Eve

3 months of summer gone by…

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Oregon coast, July

It’s been 3 months to the day since I posted, a busy last 3 months! I’ve been suffering from blog-aversion, but I’m going to try to give it a go.

River started off the summer with a new attempt at weaning. After leaving the last GI appointment we went ahead with taking away all tube feedings. We enjoyed a road trip with Grandma and headed to Oregon and Utah. It was So Nice not having to tube feed, it was a relief to think we might be done, although I was skeptical it would last.

As we launched forth into 100F average summer temperatures in the area it became our duty to try and keep her hydrated and healthy and having fun. We went about 4 weeks into this wean before we were forced to begin tube feeding again. We had, what I call, the “dehydration incident summer ’13” happen at a water park. The unforgiving Utah sun sapped little River dry one day even as I did my best to keep her drinking. She experienced terrible stomach cramps, and took naps in between the pain at the park, and that night started having fevers. I began tubing her juice and water that evening, and in a few days we ended up at the ER at Primary Children’s. Although she didn’t continue to suffer from dehydrations symptoms (other than a dark color in her urine and diaper) she had fevers and I was worried about bladder infection. So the hospital wasn’t much help, but they seemed to think she would be fine soon, only testing for a UTI which was negative. If this had been a normal kiddo with no direct port to the stomach, I would have taken her to the ER straight from the water park that day, but knowing I could slowly and surely hydrate her continually at home, I didn’t. I was so bummed about this incident, not for the weaning failure, but that I allowed her to get heat sick and get stuck all day at a stupid water park and experience such discomfort and come close to a serious brush with major dehydration! My son also got sick at with a cough and sore throat also a few days later. I continued to tube feed her from that day, as while we were at the ER I noticed her weight was stagnant, no gain in a month! No good, need to put some weight on my little girl which is what we’ve been working on ever since.

We still had fun adventures and got to travel during that month, yet grateful to leave 100F behind, back in Western Washington where we were occasionally having 85F. When we returned home we also got back on track with potty training, currently doing awesome with that! We’ve kept up about 8-10 oz. of formula tube-fed daily, spread over 2 different times. She is steadily gaining weight again, and currently about 27lbs!

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B-ball at speech therapy

River received several speech therapy sessions this summer with Julie. I feel there has been some improvement since then, River usually speaks in incomplete words, typically missing syllables, and the endings of words. Since ST has begun, she has altered a few of her errors, and has new words now that include an ending sound. Example “Hello Kitty” use to sound like “Eh-Lo-Ti”, has now turned to “eh-lo-ti-Ki-tee”. And “Chip” and “Dip” use to be missing the P sound, but she says them good now! I’m glad we had the few sessions we did as to help her become aware of her speech. Her ST will pick back up at her new preschool, Head Start.

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First day of Preschool!

So on to the big preschool news!! After MUCH paperwork, APPOINTMENTS, and some paperwork, and phone calls, and don’t forget the FRIGGIN’ PAPERWORK, River is enrolled in Head Start! Head Start is a federal pre-school program, typically for low-income families, but they also have spots for therapy kids. River will get weekly ST at the school, as well as being able to attend a half-day great program! Fortunately she does not need to be tube-fed at school. I’m so glad that we are in the position to just feed a few times at home, conveniently, and no strangers have to mess with anything. Of course I had to do a bunch of stuff with the Head Start nurse, and they have an emergency plan in place, but hopefully the school year will go smoothly and her g-tube will be a non-issue.

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Ballet for Tots!

Preschool started this week and she’s attended a few days now. So far she’s doing great, except she melts into tears as soon as I pick her up! But then they tell me how great she did all day.  She is also taking ballet class over at the Y, we started her back in June for a couple times, and now she goes about once a week and loves it! She’s so adorable in her leotards I can’t stand it. She loves playing with her “ballet friends”.

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At the Mended Little Hearts Annual Picnic

We had our 3 month check up with GI and Dr. P. They were happy to see the weight gain she’s made, but of course sorry to hear that the weaning didn’t quite work out. She has reached up to the 8th percentile of BMI…. which is actually a gain on last june’s around 6%. We have some goals to get her growing even more, and we’ve all decided to hold off on any more weaning notions for the time being and revisit it in the spring.

We were able to make it the Mended Little Hearts annual picnic this year! I won’t stop plugging them…. Also we a facebook page now for the group: Mended Little Hearts of Puget Sound