Day in, day out

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

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Various ingredients of our homemade formula

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

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

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

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

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

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

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

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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

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!

The wean has begun…

On Friday December 16th we started River’s wean. I had a giant shopping list and attacked Trader Joes and raided them of most of their food. In the afternoon she had an appointment with Dr. P her GI. He and the nutritionist (who we have known since the NICU!) were aware of our plans. We did a lot of talking about River’s current state. River has gained a lot lately and moved up the percentiles! She has usually been on the 50th for weight, but jumped up to around 65th, and same for weight and head, they all went up. Certainly a growth spurt, and perhaps over-feeding. They were very excited about her growth but I was more wary. I have already been reading and understanding that tube-fed kids are generally over-fed, and can get overweight. Being over-fed also leads to lots of vomiting, naturally their little bodies are trying to reject what they don’t need. Babies self-regulate, they only want what they need (unlike us adults with affinities for too much chocolate). I mentioned this to Dr. P, and he does agree that this can happen, and we all agreed that doing this wean will definitely show us some new information from River. Dr. P also wanted to discuss more testing with me, perhaps gastric emptying tests and an endoscopy. I’m open to having an endoscopy for her since it has never been done. Dr. P thinks its worthwhile since River is a frequent vomiter, and a quick endoscopy could provide an answer(or not) to this, or it could at least see if all the vomiting is creating damage down there. We are scheduling it for February, because if her wean proves that she stops vomiting we may not need it and can cancel! I’m against the emptying tests because she had one done when she was in the hospital recovering from her VSD surgery, it was a horrible test because she screamed the whole time and we were very traumatized by it, and the test came back normal. Now that’s not to say we couldn’t see different results, especially with thicker food perhaps, but I’m still not sure I want her to get one, not unless there is good reason too.

Day Two Breakfast

I also discussed the possibility of going to the Seattle Children’s feeding clinic if this doesn’t work. He seemed quite supportive, and was actually surprised I was interested in it. Well depending on our level of home-based success we will consider getting into their inpatient intensive wean program in the future. I also watched Markus Wilken’s lecture here: http://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv. He is a member of a successful tube weaning clinic in Germany, and came to Seattle to help out a bunch of parents and the teams at Seattle Children’s Hospital.

So here is a run down of what’s happened so far:

Day One: reduced tube feedings 20%, no extra interest in food or drink, mood pretty normal.

Day Two: no breakfast tube feedings (another 20% reduction) and had a cheerful morning at the table and ate many small bites of yogurt and tested out some frosted flakes, mostly spit them out. She consumed 65ml of drinks that day.

Day Three: reduced another 20% out of breakfast/lunch. This morning less interested in food, but ate a few bites here and there. Likes goldfish crackers a lot, and drank only 40ml of fluids by the end of the day. She took a good nap and generally had a good mood.

Day Four: Today started out again with her less interested in food, and pretty much totally uninterested in drinking from any of her favorite sippy cups. We were going to reduce her feeds again by another 20%, but I decided against it. After reaching out to a support group called Tube Fed Kids – Deserve to Eat, and talking to a bunch of the moms that have been though this, they said that most people reduce feeds to around 50% and then just hang there until the baby starts to increase their oral eating. And since River is not picking up her volume that much I really felt this was the right approach, I kept having nagging feelings about taking all the tube feedings away, and then seeing her not progress yet made me worry. I know this is the right decision. So we kept her tube feeds at around 40% of her daily needs, and mostly fluids. Her mood was pretty good and she has been taking regular naps since we started also.

Day Five: Mommy is sick! I got the flu or something related, and I was in bed all day! Super bummed about it, we were going to have our first baby friend come over to play with River in a food fun picnic, and I had to cancel! Thankfully my mom is here and she was able to take over for me and hold down the fort. River again wasn’t very interested in much, but would just nibble here and there on crackers and things. We discovered she had a high interest in drinking from an open cup(which she always has, but she usually likes to dump it all over herself too…on purpose). But since she is into it, and is drinking something from it, we give it to her. She did drink some water from a tiny disposable cup(the kind you buy for your bathroom).

New favorite cup

Day Six: I am a little better today so I can finally crawl out of bed and participate. River played in and ate a little of her breakfast, and again drank from the tiny cups, spilling a lot, but still drinking some. We just have to go ahead and let her get super messy with these things because at least she’s drinking! She’s nibbled a few crackers and yogurt drops and french fries today and is down for another nap. Thinking about searching for a cute tiny cup to buy her that’s about the same size as those pill cups. Hopefully we can have our picnic with Clinton tomorrow!

The NEW formula!!

I’ve been holding back until now to talk about the new formula that we’ve started for River. It’s been a completely amazing discovery for us. But first I have to go back a little bit to explain.

River began throwing up a lot when she was about 3 months old. The doctor’s only explanation was “reflux”. She was diagnosed with GERD. They put her on a PPI (Prevacid) and we began trying new formulas. At the time she was on breastmilk mixed with Neosure formula. Slowly over time my breastmilk supply decreased, and we had to go up on using formula. Her throwing up also got worse. It also caused her oral aversion. After her heart surgery in August, we finally got a long awaited GI consult. He recommended the most hypoallergenic formula, Elecare. They also wanted breastmilk completely removed from her diet, as maybe something in my milk was the culprit for her intolerance. Was it reflux or intolerance? Dr. Pickens has always referred to it as River’s Puzzle. We tried ruling out various things, like they gave her a gastric emptying study (nuclear medicine, horrible horrible test where they fed her radioactive formula and strapped her to a board for an hour). The study came back normal. They gave her a reflux frequency test, which required a tube placed down her nostril, just like the NG tube, which measured how many reflux events occured in a 24 hour period. This test came back without exciting results. She refluxed about 7 times in that 24 hour period, and they were non-acidic which indicated the Prevacid was working. That concluded their tests, and the rest was whatever other pieces of the puzzle that I brought to them. Her vomiting continued, it got a little better, but still a daily event. And multiple times a day if something made her retch, like oral stimulation.

I put my trust in these medical professionals, and I trusted that this was the best formula for her, until recently. Still she was throwing up at least once a day, and ever since getting her g-tube placed was having lots of gas in her tummy, and that would make her throw up too. I went on the hunt for another formula. Our GI doctor and nutritionist gave us Neocate to try as it was the only other formula they had in their case of magic formulas. That turned out even worse. So back to the Elecare. Elecare has also always made her have really runny stools. This always baffled the doc because he said normally it causes constipation. Another little red flag.

ALL powdered formulas on the market are made of corn products: corn syrup, corn starch. And lots of it. I wondered if it was that she was reacting too. We, as a family, usually ban all high fructose corn syrup products and the like. There is one formula out there made of rice syrup. I couldn’t wait to try it!!! Within a day or two of trying it, no vomiting. Less gas. Magic had occurred. But after a few days of trying it, she vomited. I was bummed. And then she got a cold, a bad one, while we were in Utah. This made her throw up A LOT! All the mucus, snot, coughing and sneezing would trigger her sensitive gag reflex. We waited this out with hope. After the cold passed, the vomiting got less and less.

We have had her on this for almost a month now, and her system has changed. She no longer has phantom vomiting episodes. She might spit up on occasion, but it actually looks like spit up, not ounces and ounces of stomach contents. She burps more like normal. If we have to vent her, there is gas in her tummy, but not a lot. And her stomach contents have begun to look like what one would expect, like digestion is taking place. Also not to mention, due to her improvement and some adverse things I’ve learned about PPI’s(Prevacid) I’ve taken her off this acid-blocker medication. PPI’s can cause problems in bone density and bone growth, and one doctor has recently done a study on it adversely affecting growth in babies. SCARY.

Now that it’s been a month I feel free to tell every one that it’s working!! Her poop is even normal!! It’s funny how parents get about poop, but if you are a parent then you know what I mean.

So, last Friday, we had our check-up with the GI Clinic. Dr. Pickens, and Judy the nutritionist. They were both excited to see that River was doing better. I believe they were both taken back a bit by my proactive approach, but screw ’em. I’ve put my trust enough in them only to still not find the answers. I had to find them myself. But none-the-less, they were pleased that River is on the up and up, and they agree that it must have been an intolerance to the corn products. River’s growth stats though were a bit down on the curve then the previous visit. I hope this is just temporary, and maybe due to her throwing up so much for a week when she was sick. We are also beginning to feed her organic food straight into her tube. Once or twice a day I am replacing a formula feeding with a watered down puree (and a scoop of formula) and syringing it into her tube. This way her body can start to eat real food too! So far this has gone really well. We make sure to also let her smell and taste the food we are giving her. Surprisingly the other night I let her sample the spinach & potatoes I was feeding her. To my shock she actually swallowed the little bite without a grimace or a gag! I could cry I’m so happy. And I couldn’t be more thrilled about this company and their formula: http://www.naturesone.com/

Little triumphs are still triumphant

A few days ago we arrived back home from our 2 week visit to Utah. River’s first trip went good, with exception of the nasty little bug that she caught as we arrived! She was also teething, working on her two front teeth! But we knew it was a cold still, as we all got it too!

Her vomiting increased during those few rough days of cold symptoms and fevers. But it didn’t take long until she was on the downhill, and somewhere in there at my Father’s house, we tried some vanilla yogurt with her. I tried it once before, and didn’t get puked on, so I thought it was worth another shot! For the first time during some food play, she put a teether in her mouth while still noticing there was food on it. Usually she spots the foreign substance and throws it out of reach. She also opened her mouth for me when I tried to put more in. Of course not a lot gets down her throat, but swallowing does occur. Vanilla yogurt again was small triumph, no gagging or puking! For the rest of the trip in Utah, I continued to offer biscuits everyday, and let her play with any food I was holding or eating. Always letting her explore anything. Working on her upper teeth also helps! She is more inclined to mouth and bite things.

Back at home, immediately we had appointments to attend! Feeding therapy on Thursday and Synagis shots on Friday.

Here is a video of our therapy session with Jennifer Sarver, her SLP. I’ll let the video speak for itself!

Awareness is what’s cool these days

Being an advocate for your child is not a luxury. Although not everyone who has a special needs child is out hitting the streets to raise awareness, we all wish we could. But being an advocate for your child is not just about “raising awareness”, it’s a daily battle to keep up on top of your child’s special needs. You have(emphasis HAVE) to keep up on top of your child’s healthcare team and doctors, you have to make sure they are not forgetting about certain details. You have to make sure they are specializing and tailoring their care based on your child’s specific needs. You have to become educated on all your child’s unique medical conditions. You Have To. That to me is being an advocate. Otherwise you might find your child’s conditions worsening, or falling through the cracks of the medical system. I am an advocate for River and Ewan. But I would also like to go outside of just their needs and help speak for the needs of all children of like conditions. I would love to find unique and creative ways of spreading awareness and raising funding for research. But that requires a whole other level of energy and workload. One day I will be able to do more. But in the meantime I will do what I can.

The week of Feb 6 – 12 was determined to be Feeding Tube Awareness week, it overlaps CHD week.

http://www.feedingtubeawareness.com is a new website devoted to our tubie kids, and formed by tubie parents. IT’S AWESOME. I’m so happy this organization has started, I know it will just grow and grow and grow! I wish to participate, but I feel already that I’m being pulled in different directions! Heart or Tube, Heart or Tube??!?

I love them both. But I feel that my pull towards CHD Advocacy will overrule my activities.

But:

Big kid food

This week was a very busy one for such a little person! Monday: treatment for granulation tissue, a unique form of scar tissue that can grow out of control on the stoma (the site of the tube). Treatment involves silver nitrate to burn off the excess tissue. Tuesday: return to physical therapy. Jean, her PT, was very excited about her recent developments, she’s nearly sitting on her own, she’s developing better trunk strength. Thursday: feeding therapy with Jennifer. I let her know that a recent trial of pea purée turned out badly! Immediate vomiting upon taste. But she is showing us that if we give her the time she may put food in her own mouth! Friday: Synagis and Flu vaccinations! Bummer. And more granulation treatment.

Even though she cannot eat things that require chewing I’ve been letting her play with apple slices and watching to make sure she doesn’t bite any chunks off. River has since been experimenting with the apples, and teething biscuits. It takes about 10 or more minutes of her just holding and looking at a new thing before willing to mouth it. River is extra Extra cautious with these new objects. But we are all very excited about this new pathway into eating, even though she may never learn to suck and swallow(as in bottle feeding), and that is difficult. But she, very slowly and cautiously, will one day eat like a big kid!
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