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

 

The end of another year

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

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

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

2013 School Pictures
2013 School Pictures

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

River @ College
River @ College

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

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

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

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

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

3 months of summer gone by…

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Oregon coast, July

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

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

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

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

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B-ball at speech therapy

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

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First day of Preschool!

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

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Ballet for Tots!

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

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At the Mended Little Hearts Annual Picnic

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

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

Oh it’s been a while!

Mama got sucked into the vortex of college and couldn’t get out!!! I’m back, and it’s time for a River Spectacular!!!

Get the sillies out

River is doing fabulous first off! We had our 3-month check up with her GI clinic and she did gain weight, but sneaked down the scale a little bit, now coming in at 7% BMI. But Dr. was assuring and said that this is River’s trend and she still falls within her general curve and not to be worried. He changed out her AMT Mini G-tube button, and River cooperated so amazingly I was wondering who this little girl was. My little girl…not my little baby, anymore. She’s grown up so much this year! She would have normally pitched a huge fit and freak-out session, which is why we switched to changing out her tube usually while she slept. This new AMT is a bit trickier to get in, and I doubt she’d sleep through it like she would the Mic-key. She was uncomfortable, scared, but so brave, and she surprised me! We got the big news too, that if we can manage not to touch her tube for the next 3 months(by that I mean use it for supplementing her) that we may be able to get it out in the fall! This is exciting and scary. So far I haven’t touched that since last week, but I keep wanting to feed her extra! That 7% is bugging me, she was over 10% three months prior. We will just keep taking it day by day as usual. Assessing the situations as they arise.

In other related news, River recently got assessed in the local Childfind, and she has  been approved for preschool starting in the fall, where she will receive speech therapy as well as regular pre-schooling. She has been seeing Julie, her SLP, weekly since about March. Her speech patterns are similar to Ewan’s early errors, but she has caught on that we want her to add sounds, also to improve her volume and clarity. It’s been going really well, but I think it will take time for her to start integrating these improvements in her regular speech. She does excellent during therapy, and daily reminding, but usually doesn’t translate over to her talking. But I predict speech therapy will do it’s job to help her and by the time she hits kindergarten she won’t even need it!

Our “little lady” has also decided that she was ready for the potty, all by herself. Recently she was adamant that she did not want to use it, but she made up her mind and went and got her potty one day about 3 weeks ago. She’s been using it ever since! She is so proud of herself, we even managed to survive camping this week with a travel potty seat! We will be all ready for our summer trip to Utah soon! They will all be blown away by the girl they meet 🙂

Ms. River is a head strong determined little girl who knows what she’s doing….maybe she is ready to let go of the tubie. Am I?

Hi from the lake!
Summer 2013! Yay it’s here!!

Surgery update and weaning

Last Thursday was River’s eyelid surgery, and everything went as expected! Here’s a little timeline:

Jan 16th 10:00pm: Fed River formula, last food she will get until after the surgery.

Jan 17th 8am-11:00am: Try our best to distract River from the fact that she is very hungry and very thirsty, give sips of water. Fasting is terrible for a toddler! Next time, if there’s a next time, only ever take a child to an early morning surgery! Wish I had been thinking ahead when I accepted this date and time.

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Just after check-in

11:30am: Check into Mary Bridge Children’s Hospital/Tacoma General for surgery. Taken to ACU and slowly get prepped. Good news is that we find out they won’t insert an IV into her until after she’s been knocked out from gas! We were highly concerned about the IV causing her problems because she’s very difficult to get one in, runs in the family. We hang out in the room, watch cartoons and color while we are waiting. They give her Versed around 12:15, which will calm her down, and causes an amnesiac effect. We speak to the doctor, Dr. Pratt, who will do the surgery, and basically they explain once she’s ready, he will only work on her for about 4 minutes! They don’t even want us to leave the hospital wing because it’s so quick. The nurse takes River away, who was calm and cooperative by 1:00.

1:1o: Surgery prep & OR.

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Leaving for the OR

2:00: Doctor visits to let us know that everything went great and explains her after care. We are taken back to the recovery room, River is now awake and very unhappy. River was crying and shaking her IV hand all about. She was in pain, and mostly upset by her IV site. She does verbalize that her eye and hand hurt. The nurse asks us if we want to give her painkillers and I say YES. Get her comfortable! So they administer fentanyl and Ibprofen, and in about 10 minutes River is much calmer and starts licking on a popsicle.Photo Jan 17, 2 25 30 PM

2:30: Daddy leaves to go get brother from school, we want him to be here to see River, and all leave the hospital together.

3:00: we are finally moved back to the ACU out of recovery, River is much more comfortable but continues to get upset by the IV in her hand. Her eye is  very swollen, and blood occasionally tears down into her eye, I have to keep dabbing it up. Daddy and brother arrive soon.

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Getting ready to leave the hospital

4:00: we get to check out! River is dressed and ready and so happy to get the IV out.

Home we go, it was an exhausting day, but very worthwhile and we know that in no time River will start feeling better and we will leave this behind us.

Our little girl did amazing, she’s a great patient, and old pro, and our little warrior. Daddy caught a very good picture prior to surgery that really shows how much River’s vision was affected by her Horner’s syndrome and Left Eye Ptosis. It’s not a pretty picture but it really illustrates how important this surgery will be for her. It’s much too soon to tell how her eye looks, it’s still red and swollen, even today, but getting better everyday too!

While waiting for surgery, a good picture of her ptosis
While waiting for surgery, a good picture of her ptosis

And now onto weaning news: Since January 2nd we stopped tube feeding her. Now it’s been going really good! She’s lost a little weight, but not much, and her drinking and eating are going well, but we’ve hit a little plateau. We hope to get it to pick up soon. We’ve had to supplement a few times in the last 19 days, she had a brief gastric bug she caught from brother a week ago, and the fasting with surgery also made me want to supplement. We only supplement at night, about 7oz of formula. And have done that about 5 times since Jan. 2nd. It’s been an amazing accomplishment to go this long and we sure hope it continues to go up!!!

4 days post op! Her eye is looking great, just a tiny bit of swelling still
4 days post op! Her eye is looking great, just a tiny bit of swelling still

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.

Photo Jan 03, 12 40 07 PM
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.

 

Surgery postponed & tummy troubles

So this week we found out that we will have to postpone her surgery that was scheduled next week on her eyelid. Unfortunately silly insurance plans get in the way often. We got it all sorted out, but the surgery will have to be rescheduled in December. So that’s where she is on that.

This week was a tough one for little River. She apparently caught a viral stomach bug, not sure what it was but she began throwing up Monday morning. She began keeping things down later in the morning, and the rest of the day went good, with me continually tubing her fluids. Tuesday went worse, she threw up everything, all day long. By 5 in the evening we were in the emergency room, we knew they could give her some medicine that will calm the tummy and make you feel like eating again. We were praying that no IV hydration would be needed. They gave her Zofran and that’s all it took! She began perking up and keeping things down. We had to take it easy that evening, and keep up on the medicine. Yesterday we had a similar morning, but once I got a dose of Zofran to stay down she began keeping everything down again. Today she is a new little girl! Hopefully this bug is done and gone with. None of us caught this virus, but I’ve heard rumors of a stomach bug floating around.

Enjoying a popsicle in the Mary Bridge ER

This came at such a bad time! Last week she had her follow-up at the nutrition clinic in Seattle, and she is actually down in weight then the visit before that! We had to come up with a revised plan on her daily feeding schedule to see if we can’t get her to eat more calories orally, and also to increase the tubed calories without interfering with her appetite. We switched to a larger tube feeding for breakfast, then tubed water following lunch and afternoon snack, hoping to increase her hungry in the afternoon. But then tubing her following dinner and bedtime with extra formula and calories. She was 11.6 kg at that appointment. In the ER she was 11.5 kg. So we have some calorie replacement work to do now that she’s better!

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!