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

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!

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/

An Updated Story

As a “blog” celebration of River’s first year, I’ve rewritten River’s “About” page. I knew that it needed to be redone, since it was getting out-of-date.

I wanted to go over her first year in my mind, and re-write my reflections of my experience. I’m so excited to see her turn one! It was the craziest year of my family’s lives. But we’ve made it through it! With support, strength, faith and a little bit of luck, we have all survived to be better people.

I sometimes wonder why. Why us? Why have we been give such special children? Sometimes during dark hours your mind goes adrift and you think that you are doomed to live in suffering and hardship. But through many different channels of knowledge and thought, Pete and I concluded: it’s because we can. We can be these children’s parents, so we were given them. And so every once in a while when I think I’ve reached my limit of sanity and capability, I remember it’s because I was chosen to do so, and I was only chosen because I am capable. And then right away my uncertainty washes away, and I turn and see my children’s glowing faces, and I know it’s true.

This has been one long and adventurous year. I’m glad it’s in the past!!!

In a few weeks my little angel will be turning one! And it was HARD WON.

River Belle, our lucky lass

Head, Shoulders, Knees and Toes

Today I’d like to share with you all a little video I made of River’s physical therapy session this week. I have found a whole new way to share information and I’m very excited about it! To review again on the reasons why River is in pt are that she developed torticollus, and motor development delays. Torticollus is a quirky little condition that resulted in her infancy, she came home and we would keep her propped up for her feedings or otherwise the reflux was worse. The boppy was a handy tool, but what I didn’t realize is that she really preferred looking one way, towards the action. I rotated, but not enough. Here’s where my failure and blame comes in! She even has slight plagiocephaly. More fun stuff. This I can definitely take the blame for. Unfortunately I didn’t realize it was occurring until well into its development. Anyway, all of this and she’s in pt and we are working on her strengthening her neck so that she will hold it upright and in alignment. She does actually stay in alignment most of the time, unless she starts to get tired, then the torti neck really shows up!