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).

Photo Apr 23, 11 06 33 AM
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:

Photo Mar 16, 11 33 41 AM
Her beautiful cake by our dear friend
Photo Mar 16, 2 13 06 PM
Her Hello Kitty/St. Patrick’s Day theme birthday
Photo Mar 16, 1 01 09 PM
Party at the Children’s’ Museum

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!!

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: 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!

A few new things

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

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

Sweet girl with her new backpack pump

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

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

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

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

I’ve found this mom’s story nothing but joyful and tear-jerking to inspire me: And here’s another great blog on tube weaning:

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

The G-Tube Mishap

We’ve recently been trying to accomplish a “no night feed” lifestyle. It’s had it’s ups and downs. And having River’s molars all coming in at the same time added with a cold hasn’t helped this along very well. Hopefully when these teeth pop out and her cold symptoms dissipate we will have more success. Once this week we had a no night feed!! Yay for progress! So for one feeding a day we put her on her pump, this has worked out pretty well. Except for the frightening experience the first day her nanny got to use the pump! River’s current mic-key button was about 2 months 1 week old, and they get changed every 3 months. So the balloon was a little low on water, and we think (according to the eye witness statement of a 3 year old) that River, while getting her pump feed (currently her Joey pump, that we sit near by with slack running to her) slid herself off the couch and managed to pull the entire mic-key out!! I was in school and got the distressed text from Patty!

River during the intervals

We of course had spares at home, so I had to get daddy to rush home, and try and assist in placing a new tube. I was 40 minutes away, and by the time both daddy and nanny tried to insert a new one(both rookies) it had been around an hour. Unfortunately their efforts were in vain! They couldn’t get one in. I left school and called the GI clinic, who thankfully said come in and they would take care of this. We arrived at the GI clinic, now nearly 2 hours out, and I guess the problem that had occurred was a narrowing of the stoma. She get’s a 14Fr (size 14 French, or gauge). The nurse starts with a 12Fr size tube and sees if that will go in. She said they need to get that stoma to dilate again. Fortunately the 12Fr goes in. They tape that to River’s tummy, then let it sit for 20 minutes. River also puts up quite a fight during each of these insertions. But can you blame her?!? After that one she places the 14Fr tube, and lets that sit for 20 minutes before trying a new mic-key button. Thankfully, everything went smoothly and she got the mic-key in. But Dr. P wanted to be cautious, and get an x-ray. And X-Ray is right down the hall, thank god! That was also not fun for River, but better to be safe! Everything is cool! After a 2 hour visit to the GI clinic I finally get to take my exhausted, very thirsty, and hungry girl home! She dumped a water bottle all over herself in the car, and then passed out!

So tired from the day

Poor baby! She stayed asleep for a little while and I snuck in some food.

In other news, she has recently been evaluated by Occupational Therapy and they, and I, think she will benefit from some Vestibular Sensory therapy. River is a cautious baby, and we think the reason she isn’t walking (because she is nearly physically capable) is that she’s too scared of sudden movements, and that fear of falling. Hopefully several OT sessions will give her some desensitization of these and get her on her way to walking. I’ve also spoken with her GI clinic and infusion providers, and we are going to switch pumps, to the Infinity pump, which is way smaller and we hope to get are used to wearing it as a backpack. She has also had several very good feeding therapy sessions lately. We start out with bubble play, and that warms her up to textures and sensations on her hands. We’ve had good eating during the last few times visiting Jennifer. And miraculously she had a great PT session with Jean last week where she was fully cooperative and happy and did most things that were asked of her. Even though her vomiting has increased, her sleep is disturbed and she has this upper respiratory junk, she still constantly amazes us!

I’m looking forward to Thanksgiving and having her sit with us and hopefully try all the yummy foods!!! But I don’t wait for that day to be grateful. I have way to much to be grateful for so I make sure and make everyday filled with thanks.

Real food = Healthy Babies

Yesterday I got some of the best news that a mom can get! I found out that I’m doing a pretty damn good job at feeding my kid! I swear, even with Ewan, nothing satisfies my maternal instincts like knowing my children are eating and growing well. After a three month gap, we got to visit with Dr. Pickens, gastroenterologist. River’s check up with GI clinic was a very good dose of much anticipated growth charts after just starting blenderized diet several months ago.

Her stats are as follows: Weight – 9.62kg, or 21 lbs 3 oz, Height – .762 m, or 2′ 6″, and Head size – 44.3 cm, or 17.44″. That equates to weight 30th percentile, height 50th percentile, head 11th percentile. These are ALL HUGE IMPROVEMENTS! And that’s not even the adjusted premature infant chart scale! That’s percentiles for babies her age! There is a remarkable leap up the charts since her last visits. Everyone directly believes that her diet is the reason why. Yay!!! I feel awesome that I’m feeding her good! I felt like I had some good information from helpful social networking, but I felt like I was also winging it. Hooray for Blenderized Diet!!! We can also start moving away slowly from formula. We can start to go half and half with some whole milk, or soy or hemp milk. Depends on what she tolerates. I still suspect a diary intolerance. And we constructed a plan to do a shorter night time feed. Hopefully get up a few less times in the middle of the night!

Here are her charts. These things are usually only of interest to parents! The rest of you will get bored.

Fun right? I’m so thrilled! Dr. Pickens was very pleased, even though River was not happy to see him! First time she’s ever burst into tears as a doctor walked in the door. It took a long time to calm her down. And we also had him change out her mic-key button while we were there. It was past due, and I waited until this appointment to do it, because River really fights us these days whenever we clean it or put medicine on it!

Dr. P and Daddy helping switch the g-tube. Funny you can't see daddy in this picture

She actually held still. In tears and fear!!! It was sad, but quick and dirty. She even went down a size on her mic-key. We are seeing if a tighter fit will help to control the granulation tissue. She is now in a 1.2cm 14fr size mic-key. Technical stuff.

We also visited with a dietcian. Phuong, who was our dietician in the ICN, was actually the one who came it! It was fun to see an familiar face, and she recognized us, but certainly not River who has grown up so much since she was there last year.

River might not be eating much by mouth, but at least we can still keep her thriving and happy. It is yet another journey to get rid of this g-tube!!

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:

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. 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.


Visit with Dr. Pickens

Today was River’s follow up at the GI clinic. She saw Dr. Michael Pickens and her dietician Judy. The picture here is of Dr. Pickens treating the granulation tissue that is beginning to form on her wound site of the tube. He’s putting a little silver nitrate on it, and daddy is holding her arms out of the way because she tends to be quite strong and grabby. She currently still has the long tube, but will be switched out for a mic-key on Tuesday by Dr. Escobar!

The granulating tissue must be treated with silver nitrate or it will keep growing beyond where it should. At this point she will need silver nitrate for a few weeks and then some prescription cream later.

We discussed at her appointment the fact that she is still experiencing a large amount of gas in her tummy, which was normal at first, following a g-tube surgery, but should be much better by now, which it’s not. We still have to vent her quite a bit, and I have her vented all night. Right now Dr. Pickens thinks we should take the probiotics out of her diet for now, and see if that doesn’t help the gas get better. Her gas bloat in her tummy has been causing her to vomit more often lately, whenever she has formula in her tummy and not on vent. Whenever I open up her G-tube port(vent it) usually a bunch of air(gas) comes out, and that causes her discomfort and may cause her to throw up or spit up. She could just “vent” herself, which the rest of us call burping, but for whatever reason, River just isn’t down with burping. It possibly could be because she’s never been much of a burper, and the sensation of the burp needing to come out could be causing her to gag and/or have a reflux and vomiting reaction. We may have to switch formulas soon as another attempt to resolve this.

But in other news, her growth is doing great! She has seemed to level out in the 25th percentile in height, she is now 68.6 cm(2′ 3″). And She is 18 pounds 2 ounces! The dietitian has finally recommended that we lower the density of her formula a bit, that may help her vomiting, and her weight gain has been so good, almost “too” good.

River is on the downhill of a bad cold this week. Earlier this week she was scheduled to have both her physical therapy and feeding therapy, but I had to cancel both of them due to illness. I believe it was Monday or Tuesday night that she was up in the middle of the night crying because she was so stuffy and sneezed, and then was spitting up and I was trying to help her and then she explosively vomited up into my eyeball. It stung. Bad.

Today though she is defiantly beginning to feel better but still has a runny nose. The rest of us have all been a little up and down with cold symptoms, but the kids got it the worst. Next week we are on board for feeding therapy and a the visit with the surgeon, and her cardiology check up! A busy week at Mary Bridge again. 3 visits a week is average for us anyway!