Milestone: 5 years old

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

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

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

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

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Dear River,

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

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One Mad Cat

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

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

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

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

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

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

MUSEUM OF GLASS

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

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

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

 

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

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

 

Blended Feelings

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

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

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

Sample recipe:

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

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

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

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

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

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

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

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

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

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

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

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.

 

Summertime Tubie

It’s been a while since I was last here! I have been crazy busy with my spring quarter of school, but that has finally been completed!

It’s summer time almost officially, and we are preparing to kick it in gear! We’ve got a year of kindergarten for Ewan wrapping up next week, then a camping trip, then the big trip to Utah for the month of July.

River has been growing and changing all the time. She just had a check up at Dr. P’s and they checked her weight and height as usual, and she’s grown a lot vertically (2′ 11″) but has managed to somehow lose weight *frowny face*. They suspect its because of the rough month she’s had with viruses! She had a double ear infection a month ago, followed by brother’s tonsillitis, which she then caught another cold from! Her appetite has been really consistent lately, and we’ve maintained 20 oz. of PediaSmart supplementation a day. Somehow all of her calories went to growing bones, she’s getting tall! She was on Periactin for 6 weeks, and we are now off. I feel that unless we see a noticeable change in appetite (in the down direction) we will probably not restart it. But I’ll have a refill of it just in case.

We had her speech and hearing evaluations recently. Speech went surprisingly well and the therapist rated her high enough to not qualify for speech therapy yet. Her expressive language is low, yet it’s coming along. She said there is a small delay but she might catch up soon enough. And her receptive language is really high and she scored above other kids her age. Her hearing test results came as no surprise because I already knew her hearing was just fine! They just had to rule it out of course.

We are still considering the intensive feeding clinic at Children’s in September. I’m very on the fence with it. I still feel her weight is too low to cut her off tube feedings, but we have some time to try and get her chunkier. She is almost officially discharged from physical therapy!! Jean wants to see her back in a couple of months just to check in and then probably discharge her completely. She feels her walking keeps improving, and her feet movements are coming along (she was pronating significantly for a while). Jennifer, her SLP for feeding therapy, thinks her oral motor skills have improved a lot lately as well and thinks we can reduce our sessions to just once a month! I agree with that decision, it’ll be nice to have less therapies for the summer and just relax and have more fun!

Such an amazing spirit!

 

The Periactin Reaction

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

She "smiles" for the camera

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

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

Ice Cream Face

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

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

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

Mmmmm

 

Weaning: Week 8

The last 2 weeks have been eventful for us in this adventure of weaning. River has had 5 appointments within the last 2 weeks, she’s had and gotten over a double-ear infection, started walking(somewhat!), and while still very interested in eating continued to lose weight. Her having a really bad cold and double-ear infection did set her back, her appetite went down, which of course is normal, but timed really bad! We are now seeing the dietician once a week, and taking things one week at a time with a plan. River’s had some really big successes, but she’s gone down to 22lbs 2oz, and we don’t feel like she can lose anymore. Even though technically she’s not too underweight, she’s not showing signs of gaining and could only be expected to lose more. The plan for this week is to follow up the three big meals a day with one full syringe of formula or food. We will be supplementing her calories to try and make up a total of 800 calories a day. Hopefully she eats about half of that herself. I know we can get her gaining weight again on that amount. The trick is how to do it without losing her desire to eat, along with any other down sides of tube feeding.

I have some ideas and things to think about over the next week, but we won’t move on any changes for this week, we will just take everything day by day, and next week when we see the dietitian again for a weight check and discussion we will see where we can go from there.

On a more positive note:

Being celebrated this week nationally is also CHD Awareness Week and Feeding Tube Awareness Week! Please visit these sites to be further educated and inspired!

We have the first signs that River wants to walk! She is able to take multiple steps on her own, once she gets a good steady stand going. She still tries to scoot most places and we really have  to get her up and encourage her, but I see the end of the scooting in River’s near future! It’s been really hard to capture a good video of it. But below is a video of her at her recent PT appointment and you will see a little independent walking going on! If only my house was covered in these gymnastic matts!

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!!!

The wean continues…

We are on Day 11 of the wean. So far River is getting about 40% of her daily needs through her tube everyday, this is maintaining a minimum hydration and seems to be keeping her very stable. She’s been doing great with her mood for the most part, she’s sleeping well, pooping well, peeing well. All good stuff considering we’ve cut out over half of her diet!!! And I have to announce one of the best things of all: NO VOMITING in over 8 days!! I am so happy that River’s little tummy can take a break from that! Hooray!

Using some fingers instead of spoons

She’s averaging 3 times a day in the highchair, and usually spends anywhere from 5 to 25 minutes. She eats small bites of smooth stuff reliably. Yogurts, puddings, soups, nutella. She will sip water from a small cup before pouring it out all over herself. She has taken tentative bites of new foods. At Christmas dinner she ate the most I’ve ever witnessed, several mouthfuls of avocados and pears, some goldfish and a nibble of pizza bread, with chocolate pudding for dessert! She mainly eats goldfish and veggie stix/chips during the day. She prefers water, but will sometimes try juice, orange juice mostly. She loves to go around and trying feeding her toys lately, pretending to give them her sippy cup or food. Her favorite presents this year have so far been a stuffed giraffe, stuffed duck, and her tea set!

At play picnic

She did get to have one play picnic with her friend Clinton this week, it went pretty well even though River was experiencing possessiveness over her things with a normal toddler flair. Mostly I try to leave sippy cups and bowls of crackers around and usually on her own she goes and snacks. We plan to keep this same routine up for a while. We will go in for a weight check in about a week. Next we need to start packing for a short trip to my original home of Utah. I’m taking the kids for a few days to visit our family over New Years. We will keep up on the 40% daily tube feedings and just see where this leads us!