Being brave

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Summer has been a whirlwind of fun and sun! We’ve enjoyed our warmest summer (ever on record) up here in lovely Washington, with many visits to the beach and forests.

Over the last 6 months River has had her annual pediatric check up, her annual cardiac exam, and another GI and dietician visit. She is now sitting at the 8th percentile, a slippage from recent times. And although it isn’t thrilling to see that happen, her weight is what makes that number drop, what’s a tad more important is that her linear growth is consistent, and it is. As hard as it is to not see her grow by leaps and bounds, seeing that linear bone growth staying hard on it’s chart line at least assures us that she’s staying on Her track, if not going up the other tracks.

IMG_0690As far as her cardiac health is concerned, we are pleased to report we will not be going back to see Dr. P for two more years!! It’s so hard to believe that we’ve been only going once a year for years now, and now down to two years!! Her visit was very uneventful, she was the most cooperative ever, the echo room almost made the parents fall asleep, and that was that! No news is good news at this place! We will see you in two years NWCHC!

Since a run of really bad colds over the winter and spring, finally when May hit and she had another cold, I decided to try adding some serious healthy additives to her blended food. We had to get her immunity stronger! And even though it coincided with the coming of the warmer weather, I can report she has been virus-free since then! I may alter my recipe some more for winter, looking for even more natural supplements to boost her immunity. So far I’m adding in turmeric root, water kefir, apple cider vinegar, ginger root, fresh lemon juice, and always either spinach or kale, black strap molasses, pumpkin seeds, chia seeds, hemp seeds and virgin coconut oil. These on top of a few other necessary foods for an all over picture of nutrition, like some quinoa, an additional protein source, and seasonal veggies. I don’t add fruit, or other foods that we know River will consume on her own. I think I’m going to start including manuka honey, echinacea and garlic as we move towards the cold season.

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I had a long conversation with a really amazing mom recently. She told me about a program in Denver, and Portland, that is a feeding program for tubies. Dr. P wanted me to consider looking into this program, and I got to hear firsthand from this mom all about it. They managed to take her 100% tube feeding son to about 50% tube feeding, which is a huge accomplishment! But I was not thrilled to find out that they spent about 6 weeks in this program. I was not onboard when Dr. P was telling me about it, and I was not onboard when the mom was telling me about it. We tried so hard in the beginning, like SO HARD, so very very hard. And although we made a huge difference in her life, I have become a firm believer in River. River is the force that propels her life, and now at five there is just about nothing we can do to convince her to eat and or drink anymore than she already does. And I’m confident that when she is ready, we will all see this and know it. I am not going to any life-ripping-up programs anymore to see if we can get her off her tube a year or two sooner then she’s ready.

We are not ashamed of having a tube-fed daughter. River is not lesser than any other. She is not more. She is her wonderful self, that fought hard as a baby to get where she is now. And where she is now is where most five year olds are. Enjoying her playtime to the fullest every day. Enjoying tackling her brother, smooshing play dough together, making mud pies, running through the woods. She literally doesn’t have time for that extra bite or drink! She’s too busy! One day, when she’s a little older, she will be ready for the next step. We are following her footsteps in the sand to that day.

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I have made a new piece recently, in honor of River, here is where you can view and purchase it:

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http://www.redbubble.com/people/motribbz/works/15994195-be-brave-heart-warrior

And this piece was finished earlier this year, not sure if I included it before.

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https://tribbill.wordpress.com/2015/04/12/new-work-adoration/

Peace, love, joy

Michelle

2 year anniversary: Open-Heart Surgery

August 25, 2010: We needed to arrive at the hospital around 6 AM, with our son staying at a friends, we checked in while the whole hospital seemed asleep.

getting prepped

It took a couple of very causal hours up in the Pediatric Intensive Care Unit to prep her gently for surgery. She was just 5 months old, and we hadn’t been back to that hospital for 3 months. Living there for the first 2 months of her life was the most trying time in my life. To be back came with very mixed emotions. Life saving surgery. Baby on life support. Open-heart surgery. Huge risks. Huge rewards. I managed to hold it together that morning. Handing her over was very difficult, and the next 3 hours very long.

The ride over the next few days was very bumpy, last year’s anniversary post is here. Our stay was 10 days and I felt like I came home with a new baby! You cannot take away the very real risks involved with any surgery, for anyone. Especially not this type of surgery. We are extremely fortunate to live very close to a children’s hospital who had a very amazing heart surgeon. I feel extremely blessed every time I remember the experience. And every time I look at her chest scar I feel gratitude and joy. That scar is one of the best things that ever happened to her. I love her scars, every one of them.

All settled in after surgery 8/25/10

Being two years away from that day is also a blessing! We have a little heart-healthy girl, on no medications, and can be active and enjoy life to her fullest extent. We are also 2 years closer to the next time we must take her into open-heart surgery. Still a ways off, but in about 6-8 years it’ll be time to do it again. This time with more trepidation since the procedure to repair her coronary artery defect is controversial, comes with the same risks as all other open-heart surgeries, and she’ll remember. But we are granted with the luxury of time right now! So I get to tuck that away for another day.

Looking back and remembering, I think sometimes how impossible it nearly was for me to endure these events as a mother. As a family we went through some serious hell. River was so ill and fragile, and endured so many health complications and procedures, my heart stops when I think of it all.

Truly impossible: life without River.

Beginning to recover!
The Amazing River Belle

My Heart Work

As I mentioned a while back I was working on a theme for my art this spring quarter at school. The Evergreen State College is a great place to attend school, they have a wonderful program called Individual Learning Contracts. Which gives you the freedom to occasionally pursue your passions, and earn credit for them. I chose to recently pursue a painting contract that revolved completely around River’s heart defects. I wanted to explore my relationship to them, and also to do some medical illustration. I was fortunate enough to have assistance from River’s Cardiologist Dr. Derek Obayashi, who sadly is leaving our clinic to go to Boston. Big Frowny Face. He was a huge help in having a specialist to show my work to so I could be corrected and learn greater accuracy. He was also very willing to further teach me about congenital heart defects! Dr. Obayashi has known River since she was one day old.

The following is the artwork I accomplished in the last 10 weeks:

Four Chamber View, Healthy Heart
Anterior View, Healthy Heart
River’s Heart
A Heart Mother
3 lbs 12 oz.
River’s CHDs

Jamie’s Heart Foundation and Mended Little Hearts

Jamie’s Heart Foundation is a wonderful family run non-profit founded out of Puyallup, Washington. They assist the Mended Little Hearts of Puget Sound group that I am a member of. I wanted to make sure you were all aware of Jamie’s and MLH and what a huge benefit they are to families exactly like mine. If you are ever looking to donate to any charity that actually hits home, these are the ones. You’ll notice River is on this page of Mended Little Hearts: Groups.

Jamie’s Heart Foundation provides financial support to CHD families that might be struggling due to the many different reasons why one might because of their child’s heart illness. Jamie was a beautiful two year old girl who’s story is so heart wrenching that I can’t even think about her without losing it. There is a special clinic room just for her at Northwest Children’s Heart Care, and River always gets this room.

Her foundation will be the spotlighted non-profit group at the Tacoma Rainier’s game on July 1st. Here are the details, and here:

Jamie’s Heart Foundation CHD Awareness at the Tacoma Rainiers

The Tacoma Rainiers are welcoming Jamie’s Heart Foundaiton and CHD families to Cheney Stadium on Sunday, July 1st. Jamie’s Heart Foundation is the featured non-profit for the game and will have special moments throughout the game bringing awareness to congenital heart defects and CHD kids.

Game starts at 1:35pm. Please come out to Cheney Stadium to join us. Visit the Tacoma Rainiers website to purchase your tickets.

Free Tickets for CHD families on July 1st

Jamie’s Heart Foundation has free game tickets to give out to CHD families. If you are a CHD family and would like to join us, please email us at info@jamiesheart.org with the number of tickets requested to reserve your tickets. CHD family tickets include reserved section tickets as well as a meal voucher for a hot dog, chips and drink.

We look forward to seeing you at Cheney Stadium!

I recently made up a flyer for our MLH group, it will be passed out at the game:

One Year Ago – River’s Heart

River and I at the Mended Little Hearts picnic July 2011

On this day, the 25th of August 2010, River had her 2nd heart procedure, 1st open-heart surgery, to repair her large VSD that was causing her heart failure. This day was, needless to say, a very big deal. The surgery was much needed and River had lived 5 months of her life in heart failure, and everyday leading up to surgery seemed to get harder and harder. She was in full swing oral aversion by then, and that was not too change.

What I remember most of all was the part where I had to turn her over. Actually every time I’ve had to do that is the most difficult for me.

I couldn’t believe I had to trust all of these other people to take care of her, her life literally in their hands. But I did it anyway, I gave her to them, I entrusted them with her life. And gratefully, they gave her back to us. I was at peace with this surgery, unlike the first time around when she was only 2 weeks old and so tiny and fragile. I was excited for her to finally live and breath easily. To see her not struggle just to do the normal things a baby should be doing. Her VSD repair went amazingly well.

Just before handing her over

In the following 48 hours she had to be on CPAP for her breathing, but eventually she was more stable. And as each day went by in the 10 days of her hospital stay she grew stronger and stronger. She healed very well, and her little personality shined through. She was actually happier in the end. She smiled more than ever before. You could tell that she felt better!

It was the result that everyone prayed for. August 25th was a good day! A day that the miracle of modern medicine saved my daughter.

In a few short days we are going to have to do it again. I will give her over to strangers and hope and pray that everything will go as expected. I do my best to stay positive, but it doesn’t matter. I’m a mother, and I worry.

River's recovery room, post-op
River at Mary Bridge, almost time to go home!

One Busy Summer!

Me and some boy with a grimmace, and River in the cutest swimming suit!

It’s been a while hasn’t it? Our summer has been very full, and thankfully I’ve enjoyed it! We returned from our month-long visit in Utah at the end of June. We jumped right back into appointments and therapies, outings and swimming lessons! Utah was a great experience for my children. We all had fun and got to visit in-depth with our many family and friends.  We will return next year for another long Utah vacay. One way to describe our summer is that I am just now uploading my photos from my camera, 330 photos are transferring to my harddrive as I type. Yes I’ve neglected a ton of work lately!

Let’s get to business: River is doing great all around! We had our 6-month cardiology clinic with Dr. Obayashi a week ago. He was very excited to see us after such a long stretch, and River’s results are completely fabulous. Her heart is operating on par with a normal heart. There is no holes or leaks(murmurs) anywhere. Her repaired areas are all looking great! Couldn’t be happier with that visit! We won’t return for another 9 months to check up again.

As far as River’s oral feeding go, they are moving in the right direction! She is still not eating what I would consider countable. I don’t count any of those calories because they are not enough to even bother keeping track of. A cheerio here, a veggie stik there, a few bites of soup over there. But she is very willing to try new things and always wants some of what we are putting in our mouths. She shouts and reaches and even shows her tongue if she wants some! She, of course, still has the occasional vomit due to gagging on food. But these are getting better and less often. She drinks water now all the time. I always make sure she has a cup nearby, she even has been using straws lately! I am just about to start measuring the amount because I think it’s on the cusp of being significant fluid intake. Not quite yet, but soon! Here blenderized foods are also going really well. We’ve recently been able to increase her intake, her tummy seems to have grown! We can now do 4 oz. at a time, and we feed her four meals a day. We’ve also introduced dairy yogurt and whole cow milk. I had previously had her on soy/hemp/rice milks, we always thought she was a little dairy intolerant, but that seems to have changed or gotten better.  I still give her alternative milks, but having some whole milk does increase the calories!

Physically River has gained tons of strength since June. She is called “scooter” by some. She scoots her butt around anywhere now. She loves to play on the floor, and often gets up in a all-fours stance, sometimes balancing on her head. She can crawl. I say that tentatively because she chooses not to crawl. If we hold her legs in a crawl position and encourage her, she will crawl around, but still hasn’t realized this is a valid form of transportation! She is also beginning to enjoy walking with us holding her hands. It’s still very unbalanced but it’s a start! She is also on the cusp of pulling herself up on everything. She has been caught several times recently standing against something all by herself! I am starting to be concerned about her neck though, her torticollus neck has made an appearance again lately. I’m not sure if this is because she is developing her other physical skills and her neck is taking a back step? We will see our PT next week again, so hopefully she’ll have a good solution.

In other news, we are attending a CHD awareness walk tomorrow! I just heard about this last week, but since we had nothing else going on how could I say no?!?! Here is the link on that: http://imhwalkforchd.kintera.org/faf/home/default.asp?ievent=470071

We have a few upcoming appointments for River, next week she will have her genetic consultation. We are not sure what will come of this, but the reason we are going is to find nothing. I want to know for certain that nothing has been missed. In 2 weeks we have a consultation with a neurosurgeon (finally). He will just be reviewing that MRI River had back in April. Hopefully he will have more of an answer for us on this possible tethered cord syndrome.

Now it’s time for photos!

Uncle Dan, River, and Aunt Becky
Grandpa and the kiddos at the Museum of Ancient Life
Nana Diane, Ewan and River at Hogel Zoo
Ewan and Lily at Lagoon
 

Build Hope

This week is CHD Awareness Week as I have previously posted. It will end on Valentine’s day. This Saturday, as we are visiting family and friends in my home state of Utah, we are going to have an early birthday party for River. I also see it as a celebration of her life. It seems appropriate that it’s falling during this week.

As an itty bitty notion on my part, we went to Build-a-Bear and built River a cute panda. Build-a-Bear is a supporter of Children’s Heart Foundation, and during this month is accepting donations for them. I figured since we all spend money on toys anyway, that why not spend some of it there! During checkout they ask if you want to donate $1 for CHF. I gave $5. Seems so small and pointless sometimes if you can’t give a lot. But every little bit helps.

I hope that one day all babies born with a congenital heart defect will survive. I hope that one day all newborns will have mandatory screening for CHDs. I hope that River will grow up to have a completely normal and active life and live to be an old old lady with her CHDs.

 

Ewan, very thrilled after a visit to Build-a-Bear.

Her panda bear is decked out in St. Patrick’s Day flare, as River’s Birthday falls on March 17th. She shares this birthday with my mother, her Nana.