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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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

 

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.

 

Weaning: Week 3

To begin, this has been an amazing 3 weeks. I can’t believe that just three weeks ago we were 100% tube feeding our daughter, and she was still vomiting on a daily basis. River has gone through an incredible transformation. She eats! She doesn’t retch or gag or throw up anymore! There may be an occasional spit up or spit out of food, but she is a different baby! We had a weight check at the GI clinic yesterday and it is a bit concerning because River has lost about 10% of her body weight. Which is the allowable amount usually in these cases. But how to keep her from losing more weight is really concerning me. We still have been giving her about 40% of fluids and nutrition through her tube daily, and that seems to be the right amount to keep her hunger stimulated, without letting her get lethargic or dehydrated. Her mood has been really good, her sleep has been good, she’s still our happy little girl! I will have to bump up the nutrition, I am afraid to have her lose more weight, but doing it in the right way without letting her progress backslide is going to be really tricky. I whole-heartedly believe that hunger was and IS the key to all of this. She had to get hungry, and she has learned that eating helps it only through doing it herself. She had to be the one. We showed her the food, we leave it out all over the place, we give her encouragement, occasionally I assist in feeding her when she allows it, but she had to do it. If you have a tubie that could eat if it wasn’t for their oral aversion(medical reasons not included) I truly believe that you have to get them hungry, very hungry for them to overcome it. We are not done yet, River still has a huge journey ahead of her in eating and tube weaning, but we have successfully started the wheels turning and the road to being fully weaned.

Here is a video of River eating some beans!

We had a great little trip to Utah over New Years! We did a lot of visiting and relaxing all in one. River continued to munch and graze and eat and try new things at her grandpa’s house. Notably she ate salsa(unspicy) and authentic Chicago pizza(just the crust). River did not make it til midnight on New Years Eve, I forgive her, but Ewan my little partier did!! The kids had a good time and the flights went surprisingly smoothly!

Trying the pizza crust! She ate 4 mouthfuls!

We are so grateful for what is just the beginning of River’s tube weaning and hopefully an amazing 2012, the year River get’s rid of the tubie!!!

A few new things

So this week River had a series of new things: first, she had an eye appointment, then her first OT appointment, she also got a new pump this week, and we have big new plans!

She saw Dr. Deem for actually the 2nd time. He was the ophthalmologist that checks the retinas in preemies at the hospital. He saw River when she was about 2 months old. We were visiting for several reasons which I won’t get into, but not because we were concerned about her eye sight. Turns out we might have to be. First to say is that the anatomy of her eye is totally normal and healthy! Dr. Deem was super good with the little ones, and River behaved pretty well at this new experience. Her Horner’s Syndrome is still very present, although he doesn’t think it causes her sight problems. He did say that she was developing an astigmatism. That’s the bummer news. I have astigmatism and it makes me terribly nearsighted. I got my first glasses I think in the 5th grade. I believe River may be needing correction at a much younger age unfortunately. But he doesn’t think he needs to see her for another year!

Sweet girl with her new backpack pump

After that we went to her first OT appointment. It went swimmingly considering she keeps refusing to nap, but obviously still needs them. She sat in a swing for a long time! The OTA says that River will get more comfortable with her balance and her sense of movement by working on such things as playing on moving items, swings, slides etc… and getting her feet up off the ground. We hope this helps her want to learn to walk!

The other advancement this week was getting her new Infinity pump. It’s smaller, lighter, and she can wear it as a backpack! We do this about once a day, but the hope and dream is that she won’t need it for very long!

I was inspired by a story I heard recently, and it led me to read about several inpatient feeding clinics in the world, and some research that’s been done about weaning children off of their feeding tubes. I decided that it’s time to give it a try, here at home, a short weaning program over two weeks. The last two weeks in December are the most ideal since i’m off of school, and am staying at home, and my mom is coming to town! I’ve spoken to her dietician, and even Dr. P her GI doctor is onboard! We are super excited and we believe whole-heartedly that River is ready. She has a high interest in food and wanting to eat lately. She has been teething in her molars and it’s made her congested and drooly and uncomfortable, but that comes and goes. She nibbles all day long, not enough to count, but she always wants a bite of our food. I really believe if we can shut off the tube feedings and get her surrounded by food everyday that she’ll take off with her consumption!

I’m going to loosely follow the program that they do at Seattle Children’s Hospital, and the Graz clinic in Austria. I’m attaching a paper that I read that is a medical research paper regarding the success rate at this clinic in Austria and what they do. tubeweaning-paper-nov-081

I’ve found this mom’s story nothing but joyful and tear-jerking to inspire me: http://www.anunexpectedpath.com/gias-tube-weaning-story. And here’s another great blog on tube weaning: http://lifeandtimesofstella.com/tube-weaning-resources-and-tips/

I still have a  bunch of planning and reading to do, and we have an appointment with Dr. P on the day we plan to start, December 16.  We will go through just after Christmas. We are visiting the family back home and leaving on December 29th, so we will wrap up our attempt by then. We have great feelings about this! And even if she’s not completely weaned, which I think is not possible at this time, it could take her up to eating 50% or more of her daily requirements! I’m really hoping for that! Also we are looking for other babies to come join us for our daily Play Picnic in my kitchen for the weaning period! It will help River to see peer models playing and having positive experiences with food. Anyone up for getting messy??!?

A new phase

So we’ve entered a new phase of our lives, River and the family are slowly adjusting. I am slowly adjusting too. At first there was definitely expected upheaval and tears! River is getting to know Patty and actually things are going pretty well. Her appointments have definetly suffered in frequency, PT is about once a month, and feeding therapy will resume this week at about twice a month. Recently she had follow-ups with both Dr. Morris (Neurosurgeon) and Dr. Pickens(GI). First off kudos to Daddy who had to do both of these appointments by Himself!! I was away for 4 days(longest I’ve ever been away from both the kids, mostly River) on a school field trip to Mt. Rainier (I’m in a geology class).

River's understands now what cameras are for!

Dr. Morris: River’s scar recently has “acted up”, not oozing, but swelling and looking gnarly red near the lowest part of the incision. Dr. Morris assured in his most mundane and unexcitable manner that it was stitches working their way out and that maybe we could apply a little bacitracin, but not to be overly concerned. And other than that the appointment was uneventful (from what I heard second hand).

Dr. Pickens and the GI clinic: This turned out to be a very lengthy appointment for Pete and the kids, but he wanted, and so did Dr. P, to be very thorough. We really want to get River off of night feeds. We have, prior to this appointment, feeding her nearly 500 ml at night, and only getting about 600 ml down her during the day. During the day it was blenderized diet(BD), and at night it was a mixture of milk and Organic Pediasmart. The highlights of the appointment were that River is growing great! She’s hovering around the 50th percentile still for weight, which is consistent and they are not concerned about calories. She weighs about 24.25lbs!! And our backs can tell. Pete and the dietician and Dr. P worked out a plan to bump up the daily feelings and Dr. P wants us to give them so her way slower than we have been, he explained that the way we were giving the syringe feeds were much too fast and were actually slowing down her digestion which would explain why it seemed she couldnt hold as much as she should logically be able too. Instead of two 70ml syringes (which we now use the Toomey syringe and it’s way better!) an hour it’ll be three 70ml (or roughly 200ml) an hour and it’ll take 45 minutes to slowly inject them. And do that 4 times a day. It seems like a huge giant change right? It is!! It is really time consuming and has been pretty difficult on all of us. The flip side of that though is that she is getting real food. To make it simpler on everyone we would stick her on a formula and a pump four times a day, in a backpack attached to her. Which is what most people do.

We are torn as to what to ultimately do since this is a huge commitment. We may think of getting a new pump and backpack for her and doing a 50/50 version so as to make it a little easier. The blenderized diet is thick and heavy and doesn’t move through a pump unless really thinned down, then it’s more like a homemade formula and you aren’t getting the benefits of having thick heavy food in your stomach. The thicker it is, the more it actually stays down, and helps with vomiting. We are super reluctant to give her more thinned-down blends. But spending 3 broken up hours a day on pushing a syringe and trying to get a toddler to hold still is pretty challenging as you might imagine. The good news is that 200 ml in an hour, going super slow, seems to be working so far. There has been no increase in vomiting because of it. And now her night feeds, on a good day, are down to about 330ml. And we are hoping to keep up the trend. In 2 months we need to check in with Dr. P and if there is not enough progress he may want to give her more gastric testing (we definitely don’t want this).

Physical therapy this week was a check-up with Jean, and while River’s skills have certainly improved, she is still not walking. And she was extremely uncooperative with us that morning, acting like a typical toddler and giving lots of attitude and independence. We will check in with Jean in another month. Feeding therapy this week, after a short hiatus, with Jennifer was another story. It went fantastic! River was actually interested in the food (of course I fed her less to get her hungry) she cooperated as much as a toddler can, and she discovered a sippy cup(Zo-Li) that she totally loved and drank an ounce from. We were quite encouraged. And of course Mommy went home and ordered a Zo-Li sippy cup off of Amazon.

As far as River’s adjusting to the new life of College Mom, it’s turned out well! Once the initial outrage of me walking out the door or whatnot has passed, she quickly settles down with her surroundings, she’s become more comfortable with Patty, and even Patty’s car. She appears to be connecting well with her new “family members”! With our new hectic schedules and busier lifestyle, this certainly helps to alleviate my emotions!

Camping + Tube-Feedings = Doable

My rugged baby girl

So a week ago we returned from our first camping trip with River. I was totally apprehensive at first, but having just taken her on a month long trip away from home I felt that maybe I could handle the feeding needs of a tubie out in the forest. It was our annual “Momzilla” camping trip where I and fellow mom’s take our kids out to a local campground, sans manly assistance.

We went to Penrose State Park on the Key Pennisula in Washington. An easy 45 minute drive. Of course all the packing and food planning and unpacking and setting up was all up to me. Overall I think the camping experience went great for the us, even though I was a little stressed. We stayed two nights at a great group site where us moms and kids had a huge site to ourselves.

Penrose Point, Washington

Now as for dealing with tube feedings: I give it a one out of two thumbs up. I was able to pre-make enough blenderized food, plus bring along water and milk and powdered formula. The Joey pump’s battery was easily capable of handling two nights without being plugged in, and her night feeds went exactly as they always do. I blended up and froze most of her food. I only had one small cooler, this was one of my cons. I wish I had of bought a nice big cooler and gotten more ice. I believe her food stayed plenty cold up until day 2. I would chase her down in the dirt, and pop in a bolus feed and tried to stay on our normal schedule. On the second day River, a very very dirty River, threw up like 3 times! Each vomit might have been contributed to her crying or other factors. But after the 3rd vomit, I threw out the blended food and went with the little bit of squeezy store-bought baby food I brought as back up. The dirt I had to deal with was the most stressful. I have a scooter baby, who scoots around in dirt if dirt is all there is! She fortunately has gotten past putting twigs and rocks in her mouth, but still dirt is so fun to play in. I kept her mostly in big durable overalls and “crap” clothes. No sense in being “cute” when you are just ruining everything on your body, baby!

The other thing I found the most difficult was just the feeling of not having a sanitary place to do tube feedings and get out the syringes and stuff. I just had to grit my teeth and push through the perceived problems dirt was causing us. Her vomiting day was suspicious though, was it because of the crying fits, or was it the food? Who knows! Either way she LOVED playing in the outdoors all day long. Naps were out of the question, but she slept good at night for the most part, even if I didn’t. And next time, either this year or next, a deluxe cooler of some sort, and a “clean” prep station for Michelle and River. Other than that, I would say camping is totally doable in the world of tubies. Get your kids outdoors and dirty people! They love it!

So Doable may not be the word most tubie parents would take as inspiring, but non-the-less it is, doable. It is not ideal. Ideal would be if I had a 5-star camper or 5-wheel, or giant RV bus. But that is not what we have. I did borrow a very large tent mind you, I didn’t want us to be squeezed into a tiny 2 man. And my fellow mommies are always very helpful with River and our needs. And when River is bigger and walking and less scooter-dirty, it won’t be quite as bad! Camping will only get easier and easier with her. I just had to grind through this one summer with a baby/toddler. And I also skipped out on camping last year since she was only months old, and camping +heart failure = completely out of the question(for me anyway). But I’m a camper, I love it, and I will have my kids raised on it!

The rugged rugrats

Baby Smoothies and Sunshine

Sometimes  it feels like tube feeding is always going to be a part of River’s life, and ours. It feels as though she will never learn how to eat, not as long as she’s being fed. Lately her oral progress has come to a stand still, maybe even reverted a little. Her recent cold/teething symptoms that always make her full of congestion and increase her vomiting has definitely taken it’s toll on her oral progress. She willingly takes food to sample and try to eat, but almost every time now it results in a gigantic vomit. It’s at least positive that she will try food, I know of many other aversion kids that won’t even try things. I just feel so bad for my baby when she retches everything up when she so willingly wants to attempt to eat it.

Here is a baby smoothie that is purple with berries

We continue with her blended diet these days. Her day is half formula and half blended foods. Mainly the blends consist of apples, carrots, pears, berries, rice milk or yogurt or kefir, flax or olive oil, some formula powder, almond butter or avocados, and a protein such as lentils or a little bit of scrambled egg.  It’s usually not all of those things in one blend, but those ingredients are what she mainly consumes. I feel it’s going really well, even though it’s a bit tricky to syringe feed her up to 8 times a day. It seems that her tummy, when empty, can hold up to 3 oz without rejection. We call them her baby smoothies, and Ewan often wants me to make him one too.

I ate about 5 blueberries!

Two new foods that have made it down her with some success lately are frozen blueberries (I figured since Ewan eats these like candy maybe she would) and corn puff treats, they are cheese flavored. I think of them as edible styrofoam, but for some reason they are a hit with her, they melt easily in her mouth and she doesn’t seem to gag on them very much.

We are preparing ourselves for a large vacation coming up! River and Ewan will get a huge break from therapies, and so will I, in the month of June! We are going to our home state of Utah to stay with all of our various family members. It’ll be a much needed dose of sunshine. Ewan will be finishing up his last year in preschool and then we will jet down south! I can’t wait to show off my large baby girl to everyone (there have been so many changes since they last saw her just 4 months ago)! I get to take Ewan to a place that I grew up going to: Lagoon! I am so use to visiting Utah in the winter months, that I am actually thrilled finally to be going in the summer. It’s going to turn into our new tradition. We will visit for a whole month during summer when the kids are not in school. My children will get some much needed quantity time with their loving grandparents, uncle Dan, and all of our friends! Just a few short weeks and we will be down there. Again, as much as therapy is vital to my children and we appreciate the need for the hard work that it takes to get my kids on track, it’s also nice to be able to take a break! Especially from this northwest gloom!!! Utah, here we come!

I know the day will come around when we will get to throw out all the medical supplies and say good by to the g-tube. But it seems so far away!!! For now we must walk the path of this lifestyle and keep hoping for the best, for what else is there but what we have today? Today is a present as they say, and I still view everyday I have with my babies as such, even if it’s unique and differently lived than most others.

Mother’s Day Do-over

My favorite flower, in case you were wondering 😉

I’ve been looking forward to this Mother’s Day, kinda for the first time ever. Even though I’ve technically been a mother for 6 years, this one is very different. Pre-River, we never made too big of a deal out of Mom’s day, Ewan was too young to get it, and Pete already has a weird amnesia when it comes to all holidays. But last year, Mother’s Day was my due date for River. And I knew by January that we were never going to see her born that day, that she was destined to come earlier.

For Mother’s Day 2010, I learned something about motherhood, that my love for my child had enabled me to grow out of my previously experienced limits of being a mommy. I was a mom to a baby girl, a baby girl in a predicament that I never would have wished upon anyone, a condition I never thought I would have been able to understand or tolerate or walk through. An experience that scarred me, a deep wound, one of those wounds that once you heal from you are stronger than you were before. I didn’t go into motherhood a very strong and confident person, especially with children. I have emerged in a different skin. A skin I’m proud of.

I decided last year that we would start a tradition of going out to breakfast, only so I could start the day immediately with booze. Mimosas! We managed breakfast and mimosas, then the car’s key fob battery died and Pete had to walk to and from Radio Shack. Then they dropped me off at the hospital so I could spend the afternoon with River, who had just reached “term” age. Any day now she was to be discharged, but it didn’t help my mood that day. I was sitting in the ICN and it was super quiet. Nowhere did anyone acknowledge what day it was. I cried the whole time. I held her and cried.

So this year I could merely cry about the fact that she’s home with us and not in the hospital. I can hold her, kiss her, bounce her, play with her, talk to her and love on her all I want. We will start the day out in the same restaurant, bring me a drink please! Even Ewan has reached the age of Mother’s Day participation! He has his school project all wrapped up and waiting and is very excited. Even my husband shopped 24 hours in advance…wait that’s normal. Love you honey!

Our exciting River moment of the day was she rolled over. Yes, this may seem like a small feat for a baby, a much younger baby usually. But for River, this has been a landmark event in her physical development. She just recently learned how to get off her tummy up into a sitting position. She has always hated tummy time. G-tube being such a nuisance!  She has for a while been able to roll off her tummy to her back. But today she willingly rolled to her tummy, and then quickly got up and into a sit. She knows now if she ends up there that she can just sit up! I found her sitting in her crib today, fighting her nap time, also! She is getting stronger, literally every day !

That little moment is why this day is so important to me now.

My greatest accomplishments