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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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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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

Going Rogue

It’s been nearly 4 months since our 2nd wean attempt, in September, at Seattle Children’s. Since then we’ve had to reevaluate our thoughts and feelings regarding weaning and tube feeding with River. After the practically unchanged oral status following the intensive weaning program, we felt that we had no more energy to put into weaning. That River just needed to be left to be as she is. What she was was roughly 50% tube fed/50% oral fed. We worked hard on her oral fluid intake, only to come home to the exact same intake as before we left for the program. I was disheartened, and decided to come to a state of acceptance. To just accept her tubie was part of her for now, and that it may not change for a long time to come. After our final Seattle follow up we decided to take a break from any feeding therapy. I informed her therapist at Mary Bridge that we would be taking at least a 6 month break from feeding therapy, that we were just going to let River coast and take pressure off of her to increase her oral intake. Mentally and emotionally my husband and I really needed a break. This decision was very difficult for me to make. I felt as if I was letting River down by not pursuing every avenue of help for her, that I was somehow giving up. But I managed to come to terms with that and realized we could all benefit from this new mindset.

Since the program she was having some trouble gaining any weight, she was remaining static, neither losing nor gaining. So in October we just started pumping her full of formula, even with the knowledge it would discourage her oral eating. We wanted to get some good weight on her, and it has been pretty successful thus far. Since then we’ve managed to get nearly a pound and half on her! As of the end of December she weighs 26 1/2 pounds!

Even though we’ve decided to quit feeding therapy, it doesn’t mean that therapy is over for her! She is currently in OT, to work more on her vestibular system, her difficulties with balance and her sense of gravity. These keep her very cautious and tend to hamper physical development if untreated. We also had her speech reevaluation, and her scores have dropped in the expressive area and they do recommend speech therapy. We are holding out on a waiting list for our favorite speech therapist, Ewan’s speech therapist that he saw for 3 years. Her speech continues to develop, and her receptive skills are very high, but she is hard to understand a good deal of the time. She may have a touch of apraxia, or just a mild speech delay, either way we are confident that just a little bit of speech therapy will do her a world of good.

Our holidays were very relaxed and very happy! We had a great time hanging out with our kids and spoiling them as much as possible! It was on Christmas day that I was really looking at River, trying to determine her health. Was she getting to a good weight? Was all of this tube feeding we were doing helping? We were feeding her high calorie feeds, and her oral eating and drinking were down to about 10-20%, it felt like she wasn’t eating anything! We’ve really been on our own lately with that, getting in to her GI clinic has been awful, and we won’t be seeing them until February!! I’ve been extremely frustrated with their office. We had a November appointment scheduled with them, then they called me like a dozen times to inform me that her GI doctor couldn’t make that appointment, and I had to change. When I finally got ahold of someone to change that there was no availability until January!!! Well I knew that he wanted to see her before that, so I told them to put me on a cancelation call list to get me in ASAP. So they never called, ever. I called back, and they said yes I was still on the cancellation list! But I had to put something concrete down, now we couldn’t get in until February!!! I’m still on the cancellation list, and apparently no one ever cancels! It’s ridiculous but I refuse to see any other GI doctor. Dr. P knows River well, and I don’t want to see anyone else. And I feel confident in my own assessments of her health to at least know her g-tube site is healthy, and her nutrition is good.

So having said all of that, we have gone rogue. As I said, River has been looking great, her weight has gone up significantly. We were noticing some serious signs of oral aversion creeping back in during all of that tube feeding. While she was on the high-calorie tube feeds, she started to become more gaggy on things, brushing her teeth, on various foods. I could see we were really starting to back slide. Ideas of another wean attempt began to sneak back into my head. I just felt, deep down, instinctually, that she is capable of eating and drinking everything she needs. I knew, and have always seen, when we tube feed she’s not hungry/thirsty. During the Seattle Children’s program, while all of us were diligently trying to get her to eat and drink more, the results were from the professionals that she eats a good diet and a good variety of foods and calories, but that her fluids lacked. ALL THE WHILE they wouldn’t let her get dehydrated. We were still giving her around 700 mls of water through her tube. OF COURSE she wasn’t that thirsty. I have known this, and I should constantly remind myself, that medical professionals always have to stay on the safe side. They will never tell you to do anything that might be considered risky. They have malpractice to be concerned about. For all I know they’ve all been screaming in their brains at me, hoping I’d pick up on it psychically, that if only we took her completely off the tube would we see what she is truly capable of. And maybe deep down I’ve always known we need to try this too, but I’ve had to balance my instincts with what her medical team tells me. Maybe this long hiatus away from her GI and the feeding team has been a blessing. We’ve decided to stop tube feeding River.

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Jan 3rd: Eating an amazing lunch, and entire 1/4 of a turkey sandwich and more!

We started January 2nd, 2013. Today is the 6th, this is her fifth day with zero tube feeds. We only felt comfortable saying two days tops! It’s been 5! Day one she didn’t wake up hungry because we tube fed her at night her typical formula bolus of 7 ounces of Compleat Pediatric formula. But she drank more juice and milk than I’d seen since the September program that day. She ate good. She asked for more food. She even went to her high chair on her own, waiting for her meals! This willingness and hunger she’s had has blown our minds. I started keeping track of her daily drinks. Each day it’s crept up an ounce or so. Day 2 she drank 8 ounces total, then 10, yesterday it was over 12 ounces in one day! Unheard of!!! We are taking it day by day, we have no goals. We are going purely off of our gut. If we feel she needs a tube feed, we will give it to her. We will continue to observe her overall health and body fat. I will weigh her about once a week. It’s time to start trusting ourselves on this. And we are cautiously excited.

Now in order to get the good numbers we have got, I have to hound her. I have to constantly stick a sippy cup in her hand, or her mouth. Constantly pop bites of food in her mouth for her. Make sure at least every 2 hours she is getting some sustenance. But I’ve never seen her accept this as much as she is right now. She lets us keep sticking drinks and food in her mouth. And if we are patient at meal times, she will eat more than we expect!!! The other incredible thing that has happened is her mood. Before this wean attempt, her mood was actually beginning to concern me. Was it typical terrible twos?? Was it holiday overstimulation? She was a moody cranky thing most days, tons of whining. I thought maybe it is her communication that was frustrating her, unable to get us to understand what she wants. But since Day One of the wean her mood has been glorious, she’s been beyond cheerful and cooperative! Fingers crossed it stays this way!

Our little beauty
Our little beauty

In other news, her eyelid surgery has been rescheduled. It’ll be on January 17th at 1:00pm. If we are still on no tube feeds at this point I definitely expect a set back, but that should be normal. Hopefully, best case scenario, she will go to sleep for a little while, wake up with minimal pain on her eyelid, and we’ll pop back home, and a little tylenol and our girl will feel fine. Again, fingers crossed.

Here’s to following your gut.

 

Intensive Feeding Clinic @ Seattle Children’s Hospital

There’s no doubt about it, everyone had high hopes. Can’t deny that everyone prays and wishes for miracles; of course they do. We did, our family did, our friends did. For some I know this clinic has brought around great change, babies that enter completely orally aversive have known great success after their two weeks in this clinic. To summarize, what we experienced was not a miracle cure. It was an education on how to feed River in a way that gives her a better road to success.

Seattle Children’s(SCH) is one of the only places on this side of the country to have a clinic that does this kind of intensive therapy, based on calorie reduction and daily feeding therapy. We are fortunate to live close enough that it seemed a logical choice. We still do not live quite close enough to make it an easy commute though. River and I opted to stay for the weekdays up close. Her insurance approved accommodations(an unlikely occurrence) and we were granted two weeks at the lovely Seattle Cancer Care Alliance House. It was an incredible building, and filled with incredible people. People from all walks of life, attending some kind of treatment or caregivers of those hospitalized. I can’t say enough good things about this place and this organization. This place was built much like a Ronald McDonald house is built, specifically to care for those undergoing medical stress. It was soothing and had everything you could ask for in a home away from home. I think I will need to do an entire separate blog on this house and our experience there.

About 4 days prior to Day One, Monday September 10th, we start reducing River’s calories about 20% a day, switching out her tubed formula for tubed water. By the time we arrive River is down to one tubed formula (about 160ml) bolus at night, with about 20 oz. of tubed water as well throughout the day. The goal is to keep her hydrated, but just barely low enough to make her thirsty, and hopefully extra hungry as well with all the calories we cut out. We leave home, Daddy and Ewan to fend for themselves. We meet Peggy, who is to be her occupational therapist throughout the next 2 weeks(and follow ups). River is also followed closely by a dietician and a nurse practitioner while there. River handled all of these changes with hardly a hiccup. She, for the most part, was her typical curious and cheerful self. There were some crankier days, and definitely she was affected by all of the stress and change, but is so easy going that you have to know her well to see how it’s affecting her. We also meet Ezekiel, the little boy who is attending the program with River. They always have 2 participants at a time, we alternate 3 feeding sessions a day. River’s schedule was 9:30/12:00/2:30, with hour and a half breaks in between. We start to learn about the hospital and where everything is in it. It’s a large place with many different areas to interest River, places to eat, and places to walk.

I always knew that feeding therapy was a team sport, where parents do not sit on the sidelines. But seriously, this is hard work for the parents. Unfortunately due to our lives Pete was unable to attend any of the sessions, having a full time first grader and a full time job at home. If you have any notion that you will take your baby to this program and you get to hand her over to the therapists to let them work some magic and then give you back a baby that eats and drinks you are delusional. The caretakers of the tube-fed child, and a child that is ready for the next step, are the keys to the solution. The therapist facilitate, provide guidance, provide shoulders to cry on, and tricks and ideas to try out. But they do not cure nor take over.

We learn River loves the piano in the Child Life Room

The Basics: River is given 4 boluses of water a day, following a meal, and one night time bolus of Compleat Pediatric formula. Miralax is given daily. Each of her boluses are around 165ml. On some days we gave her less water to see if it would stimulate her drinking. Usually it just caused constipation.

Day One: Drive to Seattle. The first day is a lot of get-to-know-you stuff. Peggy needs to get familiar with River. We share three meals together. Set goals for River which include: drinking milk 3-4 times a day, increasing eating speed(meals should only be 20-30 minutes for maximum benefit). We make River comfortable. We go to the playrooms for breaks. Drove home to Fircrest, packed, returned to SCAA House to check-in. No pooping, already showing signs of constipation which is a major killer in babies wanting to eat.

Day Two: Take shuttles from SCAA to SCH (learned riding on hospital shuttles is the most uncomfortable form of transportation EVER). Today focused a lot on River’s drinking. We thicken all her drinks with Simply Thick now, to half nectar strength. We discuss all manners of calorie boosting. We limit water boluses. The best drinking day, drank 11oz. 3 poops.

Day Three: We begin to learn that River doesn’t ever want to eat until she’s been awake for 30-60 minutes. We soon turn an early breakfast and a morning snack into just One meal in the morning instead of two. River brings a stuffy everyday and almost never lets go. We notice major distraction and tiredness in afternoon. Drinking was only about 5.5oz. No poop.

Day Four: River continues to show off her good eating skills and the variety in foods she eats. 7 oz of drinking. Finally a poop at bedtime. We discover Lunchbox Laboratory, our new favorite eating spot in Seattle. It is down the street from the SCAA House.

E eyeballing R due to sharing of his beloved Cheetos

Day Five: A good drinking day, 9 oz. We experiment with coconut cream in her milk. Today we have our first shared meal with Ezekiel! We hope it will help him since he is not a good eater, he likes food, but only swallows liquids and spits out solids. He’s an extremely cute and intelligent 3 year old. Got to go home today for the weekend!! Took family to Lunchbox Laboratory for dinner.

Day Six & Seven: at home, more relaxed, but stick to routine established at SCH. 5 oz of drinking Saturday, 6 oz Sunday. A little constipated again, only one poop. Continues to eat well. Try out mixing milk with heavy cream. Return to SCAA House Sunday evening.

Day Eight: A good drinking day with 10.5 oz(5.5oz in one snack of milk with cream). Learned to start offering only a tiny afternoon snack with a high-calorie beverage, try to focus on drinking only for this time of day. Best trick is to stick her in front of Yo Gabba Gabba with a drink and assist her as she’s zoned out. This tv method is used often for the rest of the week. Although no body likes this as a long term solution, but as a short-term solution it’s actually approved. Best to find and use all tricks to learn to eat and drink more, before then eliminating such tricks.

Day Nine: Starting to think that offering sweeter drinks is not the key. 5.5 oz of drinking today. Experimenting with different drinks added to half & half. Constipated again.

Day Ten: Today we had another shared lunch with Ezekiel. About 6 oz of drinking this day. Mostly offering just whole milk mixed with cream(yum right?). Still Constipated, seems to be affecting her appetite.

Day Eleven: Started adding prune juice to her boluses. Drinks about 9oz overall. Finally poops! Another shared lunch with Ezekiel and family. Start resorting to such foods as Velvetta mac and cheese for higher calories. Can’t be healthy all the time I guess!

Day Twelve: Finally things are moving along(in her bowels). We have our last meal with Ezekiel and say farewell! Wrap up with the dietician and feeding therapist and take home a new plan.

Enjoying some Tootsie pops

What we accomplished/learned: 2 weeks of hard work for one. 2 weeks well spent with my daughter. 2 weeks of learning. A new nutrition plan. We learned that with this calorie reduction River was able to support on average 700-850 calories a day orally. We are able to reduce her formula boluses. We will continue to bolus her water and whole milk(for calcium) throughout the day, and one formula bolus at night. River expanded her textures, she is now more willing to combine textures such as creamy on a crunchy! She’s learned to drink more in a day, but only with a lot of persistence on our behalf. We’ve learned she still loves food variety and there’s nothing beneficial about offering routine foods, only routine meal times. 2-3 hours between each meal is extremely crucial. Time it takes to consume a meal is really important as well. It use to take River sometimes 40 minutes or more with her food, we know we need to encourage her to limit that now. After 20-30 minutes you begin to feel less hunger regardless of how much you consume, so getting as much in in that first 20 minutes can really make or break a toddler’s meal and it’s nutritional value. We’ve learned it’s ok to use certain rewards, like a TV show during a snack if River is not interested. It suddenly takes the focus off the food/drink she may be refusing, and suddenly it might get her to take it. If she gets disinterested or tries to leave then the show gets turned off. It’s been working. Desserts are a good thing, offer them more often. Add cream to anything you can. Add calories as much as possible. Adding a bedtime snack has turned out to be crucial as well, sometimes it means 100 calories to her day.

Now that we are home: constipation has not returned thankfully. Drinking has declined. We have 3 future follow-ups with the team and will also have to work with her local feeding therapist on River’s new goals. Maintaining the meal and bolus routine is really important, but definitely hard on us. It seems that WE are the ones that need to change more than River does. Yes this is all for her, all to eventually get her off the tube. But it’s us that are the ones that have to focus and accept change and stick with the plan.

Would I do it again even though it didn’t offer a miracle? Yes. Would I recommend it to others? Depends. How easy it for you and your family to take 2 weeks away and learn perhaps, depending on how involved you are, a whole new way of doing things? For reluctant parents I would definitely push it. If you are reluctant then maybe you are seeing how much effort and change it would require on your part and not the child’s. Then it’s definitely a program for you. For those, like myself, that are already mega-involved and super advocates for your child, maybe it wouldn’t take 2 weeks to learn a lot of these lessons. Maybe you can take it from those that have already gone, read the blogs, try out new routines and new tricks, try a little (supervised) calorie reduction at home, and maybe if you are consistent you can accomplish a lot of these things without leaving your life for 2 weeks!

The elusive dysphagia

With the rash epidemic under control and healing, we had a visit to Seattle Children’s Hospital, previously delayed, last Monday. It was a video fluoroscopy exam to see if she has any swallowing dysfunction. First, thankfully they have a great sibling playroom at the hospital, Ewan was able to go somewhere fun while we did our exam. They take River to Radiology. River gets to sit in a fun little chair where we will feed her things as the x-ray takes videos. River was pretty cooperative when it came to trying different foods that were filled with barium. She especially enjoyed the nacho cheese Doritos with a barium paste. When it came to trying the different fluids it got trickier. River needed to drink things with varying viscosity, a few drinks she was willing to take sips from, but we couldn’t get her to do seconds on anything.

According to the test River did show signs of dysphagia, which just means swallowing dysfunction. It appeared ONLY with the thin fluids. She did not actually aspirate or anything go down her airway. But they did say that there was signs that it starts to go into the airway(at the top) and then continue down the esophagus. She cleared out all remaining food/fluid in her esophagus. It was called “deep penetration” with a small risk of aspiration. But considering that River is not getting colds or pneumonia left and right it’s likely she doesn’t aspirate. The important thing we can get out of this is trying to find ways to get her to increase her volume of fluids. She was prescribed a thickener to her fluids. They want her on half-nectar solution, and we are using the brand Simply Thick. It makes her drinks close to a syrup consistency. That she has dysphagia is possibly a source for her self-limiting of drinks. She might be able to feel some level of discomfort when swallowing thin liquids and this could be the reason she only drinks small amounts in a day.

I am astonished by this diagnosis mainly because I think this should have been discovered like YEARS ago. I’m angry, but not sure at who. Maybe at myself for not pushing this test sooner. Maybe at all of her GI team for never ordering the test before. Maybe at the feeding therapist for not suggesting it. I, myself, didn’t think she had swallowing problems so I never pushed it. So, no one to blame really. Just everyone. Better we know now and can do something about it. Since last week and trying out the Simply Thick, she doesn’t baulk at it, and she is willing to drink juices and milk with it, so far so good. This will really help at the feeding clinic, knowing this information. Maybe it’s the reason we’ve been tubing her liquids since last winter.

T-Minus 6 Days until feeding clinic!

Sweet Baby Girl

A Busy Summer

It’s been a very busy summer with the whole family! River and Ewan and I spent a near month in Utah visiting our family and friends. We traveled from Washington through Idaho, into Montana, down through Yellowstone, into Wyoming, and on to Utah. 1200 miles one direction! The kids did great on the road. We got to see many friends and family along the way, and then spent many hot days down at our relatives. Highlights of the trip were the many water slides we encountered. Both Ewan and River went down them from the first time in their lives.

Old Faithful, Yellowstone, July 2, 2012
Practicing the hoola hoop

Now that we are back home after our long trip it’s back to business with River’s treatments. Throughout the summer River has improved in her motor skills, her walking and running and jumping have all gotten better! She’s getting faster and taller all the time! Her drinking fluids also improved during our hot months. She’s up to around 5 ounces a day now of oral fluids, which is a pretty big improvement over around 1-3 oz. in a day.

Waiting for the geyser

Last week we had feeding therapy with Jennifer and she managed to get her to eat half of an avocado and drink a juice box. Those food themselves are not unusual but the amount was! Although River is usually full of energy and couldn’t sit still during the session, she mostly ran back and forth. We’ve also decided to stop the use of the Periactin, we think that it’s usefulness has declined(which is typical).

This week we’ve traveled back to Seattle Children’s Hospital for an appointment with the nurse practitioner that works with the Intensive Feeding Clinic. She wanted to clear River medically so she can attend the clinic. She was very impressed with River’s progress so far, and her previous weaning, and overall condition. She gave us more insight into the program, and assured us she will try to help us find a way to stay up in Seattle during. So far this will prove the biggest challenge. I spoke to the Ronald McDonald House last week and we are a whole 4 miles too close to qualify for housing. Yes that seems ridiculous but they must have their guidelines. But they may make an exception. We also have to go through her insurance first to see what they will cover as far as housing and/or gas. We may end up doing the drive everyday (which is of course a last resort for us). It’s a two-week long program (10 actual days), and the commute would be over an hour in each direction usually. The NP also wants River to get a swallow study done. She’s never had a real swallow study, and they have to be completely assured River has no swallowing dysfunction before attending. So that’s on the books soon. So we definitely have some details to work out before we go to the Intensive Feeding Clinic. But we are scheduled to go September 10th.

Today we go back to Jean for physical therapy. River needs to be seen periodically to make sure she’s progressing. I believe Jean will see many improvements. Next week we will check up with her GI clinic. Also I scheduled a check-up with her neurologist. He previously saw her for her Horner’s syndrome back as an infant. I have been wanting to follow up about her eye for sometime. There are times when she has her left eye closed all the way, and I’m concerned it’s impeding her vision, or going to cause her eyesight to decline faster. We may need to see her ophthalmologist sooner than expected as well. We will also be discussing possible balance or other neurological conditions that might be causing River movement and gait problems. She does lose her balance easily and appears to get dizzy at times, especially on a nonuniform surface.

So there will be many new things coming up for River this month and next! We are still working at having a great summer as well. We will be leaving this weekend for the coast, and we are very excited to show River the ocean(not just the sound) for the first time! The kids, even the dog, get to have another great adventure soon.

In other toddler news: we had a recent potty training attempt. It will ill-fated though. I know River is ready to start, she is showing great signs and interest. We bought the undies and got the potties out. We are also trying to move our rooms around in the house and I spent the weekend cleaning and painting the upstairs room for them. Daddy spent the weekend also cleaning and working. We just didn’t have the time to dedicate to potty business. Next week things will be a lot more settled and we can try again! 

At the Girls’ Lunch, she loves Salmon!

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Many little updates

Sunny Spring Day!

So we have a few things to get caught up on with River! Over the last few weeks River has been to Seattle Children’s Growth and Feeding Dynamics clinic; her 9 month check up with Cardiology; GI clinic check up; Feeding therapy with Jennifer; and is OFFICIALLY a walker! And in the next couple of weeks will go so a speech and hearing evaluation.

Being a perfect angel during the echocardiogram

Cardiology: We finally got to see Dr. Obayashi after a 9 month hiatus! River had to go through the regular testing, ekg’s, blood pressure, and an echocardiogram. She was an amazing perfect patient for the technicians and the doctor. Everything checked out great! I don’t think River has to go back for another 9-12 months. It was also a good opportunity to chat with Dr. O about my current art projects regarding hearts and CHD. He is assisting me as much as he can by helping me pinpoint River’s CHD’s so that I can try to visualize them and eventually have several illustrations of her heart. Dr. O loves little River and has been amazed by her health and progress!

Getting her EKG

Seattle Children’s: Last week we visited Seattle Children’s Hospital for our long awaited Growth and Feeding Dynamics Clinic evaluation appointment! We decided to get this referal because they offer an Intensive Feeding Clinic that is a two week long program. I wanted to learn more about it and consider whether or not this would be a good place for River. They did a lot of the usual intake questions, they had to learn River’s history. We met with their feeding team, and talked about River’s journey with feeding tubes and oral aversion. I explained to them about the at-home wean that we attempted and they were extremely impressed by the progress she’s made with eating. Their program consists of two weeks, Monday through Friday, weekends off, where you go in the morning and do three back-to-back feeding therapy sessions until the afternoon. To do this program we would have to live up at the Ronald McDonald House, because the commute is just too brutal, and I told them I would be uninterested in it if I wasn’t staying in-town. They do believe River would be a great candidate for their program. By their estimates River is an acceptable BMI and growing at an adequate rate (very assuring :)). The other thing we talked about being a big plus for River’s oral eating is the need for peer interaction! They use to do the baby picnics and peer modeling at this clinic but that has declined, and it can be very tricky to find age appropriate peers while your child is in the program. I said that is a huge factor for me as we readily see River’s oral eating improve if she’s eating with her brother or other peers.

Now it’s on me!! I have to decide if I think their intensive program is the best thing for River! We are tentatively scheduled for the program during the first two weeks of September. I would have to move up to Seattle during that time. I’m going to weigh all the pros and cons and hopefully discuss this with families that have been through this same program.

Loves her elephants

Dr. Pickens: River had her weight and nutrition check up last week, following her regular feeding therapy. She did really well in FT and we are mainly working on her ability to chew food properly, and to encourage more drinking fluids! Fluids with calories is a huge part of a toddler’s consumption of daily calories and requirements for growth! Dr. P is happy that the Periactin at least proved to be somewhat an appetite stimulant and we discussed keeping her on it for longer intervals. As long as her appetite appears to have some improvement from the use then we are going to try and keep her on it for up to 7 weeks at a time before breaking. She is currently on it, and still seems to have a slight upswing in her drinking and eating while on it. Her weight is still hovering around 24lbs, but they are satisfied she is gaining weight again and don’t see a current need to increase her diet. We discussed the visit to Seattle. Dr. P has had one other patient attend this clinic, and they did see it help, as the child was at a 0 in the oral department, and the clinic helped him greatly increase his oral eating, but the commute was their biggest complaint, and the need for peer modeling.

Here’s a video of her walking (to Dr. P’s office):

Things are moving along on my CHD project and I’ll have a separate post soon regarding some of the heart art pieces!

The Periactin Reaction

Finally! Yes an update has come! I’ve been so busy lately, it’s hard to get 5 minutes!

She "smiles" for the camera

River has just completed 3 weeks on Periactin. She had the first week at half dose, then 2 weeks at full dose. She’s been off it for several days now. There was definitely a difference when we started it, we could tell right away that her appetite went up. The last 3 weeks have been at least double in her oral eating! She seems to be loving food right now! It’s been incredible. It’s hard to say how much of that is Periactin though? We really don’t know, but it certainly occurred at the same time as starting the drug. She is just starting her week off rotation, and they said to keep an eye out for a decrease in appetite. So far I don’t think I’ve seen her decrease. We are still waiting to discover how much we can say it was the drug or not. Only time will tell.

I haven’t weighed her since her last weigh-in at the clinic, but I believe it’s safe to say she’s having a nice slow increase, my arms hurt more when I carry her around! Her chub is beginning to return to her thighs too. It never fully left, but the fluffiness is more noticeable. It’s been nearly 3 full months since we started the wean, and I think we are safe to say that we have a  50/50 tubie baby! She is no longer 100% tube-fed and I feel extremely happy and relieved with this number! Three months later and something significant has occurred. Also my high-tension and erratic emotions linked to it has begun to wane as well. I feel we’ve gotten into a nice rhythm  of tube feedings. She get’s 3 boluses a day directly following a meal, and we give her around 250ml-300ml in fluids at night. Her fluid intake is still on the poor side, she doesn’t really hydrate herself, and if anything, that’s what the tube feedings are for, and why not throw in calories as well? If I see her reach her weight growth curb again I will know we are in the neutral zone and we won’t need to do anything more than keep her on that curb. I feel that in the near future, when everyone is happy with her weight and growth again that we can try another attempt at full weaning.

Ice Cream Face

And thank goodness for our upcoming consult at Seattle Children’s’ to help us work on all of that! We have an appointment set with their Feeding and Growth team, in April! They have a rapid wean program there, which we are going to determine if River is a candidate for, and what all that means. Her current feeding therapist, Jennifer, is very pleased and excited about River’s new oral skills and has seen huge improvements, a different baby she says! So I think having some extra feedback and strategies from Children’s should be very useful.

And in other tubie news, we’ve stopped her blenderized diet indefinitely! And although it was such a good thing, it’s a lot of work! I believe in it whole-heartedly and would recommend it to any other. But since River is getting a diverse selection of food she is eating herself, we’ve been supplementing with Pediasmart for the other portion of her daily calories, or whole milk when I don’t have any mixed up. It’s about 30 calories per ounce, and we also put a little in her night bottle so she can get a taste, and maybe one day be willing to drink it straight!

And in heart baby news: I’m very excited to announce that in Spring quarter, starting in April I am launching into a self-directed project at school that will focus on congenital heart defects. I get to work directly with River’s cardiologist for one portion, I’m going to illustrate River’s heart (pre and post-op). I’m thrilled that I get to do something like this that I’m so passionate about, and hopefully it will teach me a lot, as well as the ability to spread awareness to others through art.

Mmmmm