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

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.



Traveling with a Tubie

Swim time, and with a tubie it's no problem!

We are in week 2 of our month long vacation down in Utah. I’ve been a little silent on the blog front because of that. We are taking a nice, long, sunny vacation down in my home state with our family and friends. Both River and Ewan have been doing great and we are all taking a little break from therapies and appointments, and the rain and the clouds in Washington! We flew out this time, same as back in February. Thankfully I had Daddy with us on the way down, taking River on a plane was a bit challenging this time since she has begun to express her little feisty personality more, and was behaving a bit more like a bored toddler on a plane this time! Sadly, though, Pete couldn’t stay for the whole month, unlike his stay-at-home-wife can.

River has been doing about the same with her eating skills. She is still adventurous and wants to try anything we are eating. She is still very limited though in what she can manage to chew and swallow and not throw up. Our veggie sticks are having the most success lately,  they melt easily in her mouth and are pleasantly salty and crunchy.

Trader Joes Veggie Sticks

The other highly successful food lately with her is cream of brocolli soup!!! We keep it stocked in the fridge now, and if we go out to eat that’s usually what I get so she can have a few bites. We have also found a sippy cup that’s working pretty well, an easy grocery store buy, a munchin no-spill cup.

There is no way around it, traveling with a tubie is not easy!! It takes a lot of extra packing and planning and everyone being on board with what’s best for your tubie’s needs. It’s been a bit of a challenge not having my Oster blender I use at home. It does a fairly good job, rarely I may need to strain my blend just to be sure it will pass through her tube. So far at my MIL’s and mother’s houses I’ve been using their cuisinarts, with acceptable(not fabulous) results. Still have to strain a lot! But we make do with what we have. I’ve shopped at several stores and gotten the foods River is familiar with. But we are on the go a lot! I’ve had to find a quick way to pack up some food for her and get out the door so we can go enjoy ourselves at different events.

Here is the bottle insulator, the 5 oz. medela bottle to hold the BD, the 60ml cath syringe, straight extension tube, and a 10 ml syringe for flushing, and a ziplock with ice cubes
And it all fits inside!

Not only useful, but cute, I have seen these bottle insulation packs around, and I stumbled upon one at a consignment store for $1.50 the other day and I thought it might be useful. It’s my new favorite thing! I just put ice in the bottom, the blended food on the ice, shove her syringe and tube inside, zip it up, and off we go! I think it’s good for about 2-3 hours at this point, unless I can come up with a way to keep the food even colder inside. With all the back and forth and messed up schedules, I’ve gone to just feeding her about 2 oz of BD every 2 hours. Its a bit too much for my brain to attempt a different schedule right now, but I’ve finally had some time today to sit down and start working out a better feeding schedule and better recipes. I am trying to see if we can’t feed her less formula at night, and get more down her during the day. We’ve stopped the 6 a.m. formula feed since being down here and I can already tell she’s hungrier in the morning, so I want to keep it that way! I’ve also read that some kids do good with giving water a while before each feed might aid in better digestion and less vomiting. I’m going to see if I can work that into our schedule too! My other upcoming feat will be in perfecting River’s daily feeding and fluids into something manageable for her Nanny to do when the time comes in September! Our amazing Gramma Patty(it’s one of my friend’s moms, whom I’ve adopted as my Washington mom) will begin watching River along with two of her grandsons starting in September for us, because Mama(me) is going back to school!

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!!

Baby Smoothies and Sunshine

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

Here is a baby smoothie that is purple with berries

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

I ate about 5 blueberries!

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

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

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