Thursday, October 7, 2010

Defeated.

This post is going to seemingly pale in significance to what I posted about yesterday, I realize. However, if I've learned one thing over the past year and a half (I say that a lot, don't I?), it's that every person and every story matters.

Sure, Jeramie and I have had to endure more as parents than many of our friends, but does that make their stories any less important? I've had friends tell me something that's wrong with their child, from an ear infection, to a more serious illness, and qualify their story with, "but I know it's nothing compared to what you've gone through." While that statement might be true, their child's ear infection is just as important to them as Ethan's vibrating chest is to me. And, although my concern for Ethan will always be heightened, being that he is my child, I am still capable of showing concern for another child who might not be "as sick".

I don't know what it's like to lose a child, but those mamas who do still express concern and interest for the children who are still fighting battles. We're all in this together, from a congenital heart defect, to cancer, to a splinter in a finger. It's all important, and it all matters.

So, while I am in the midst of being heartbroken for these families, pouring out prayers for peace through it all, and asking y'all to do the same, I am also going to ask you to send up a few for Ethan (and myself).

I took him to the doctor yesterday for this nagging cough (which he now has an antibiotic for), and they went ahead and did his weight check while we were there. Many of you probably saw my post full of excitement on Facebook a couple of weeks ago when it appeared that he had gained 12 ounces in about as many days. Well, it seems as though that was just an illusion. The doctor two weeks ago was comparing a naked weight with a fully clothed weight, and Ethan's jeans, t-shirt, and tennis shoes were enough to make us think he was on the up and up.

The reality is that his naked weight from yesterday, compared to his naked weight at his 18-month well visit, has dropped by about half a pound. I could have cried. I feel so defeated, and completely out of ideas. The pediatrician was, of course, not happy about the weight loss and got on the phone with some people at Duke. He's in the midst of finding a nutritionist for Ethan, since the one that was originally assigned to us seems to no longer be in the system.

Yesterday was also the day we just so happened to have an appointment with Ethan's feeding therapist. I relayed the information from the pediatrician, to her, and she agreed that we've got to do something. Ethan is teetering at a weight that's starting to scare all of us; he dropped from the 25th to the 10th percentile in a matter of four weeks. If he goes much lower we'll be looking at "failure to thrive", which equals bringing the G-tube back into play. Everyone knows how hard we've worked to get him to eat by mouth, and going back to tube feeds now could possibly undo all that we've done.

So, here's the plan. We continue to feed Ethan as we are; adding butter and heavy cream to mashed potatoes, Carnation Instant Breakfast to his milk, fatty oils to grits, giving him spoonfuls of peanut butter before bed ... you get the idea. I told our feeding therapist that, in an attempt to fatten him up, I feel like I'm clogging his arteries in the process. So, if any of you out there have some good high-calorie, heart-healthy options for a picky toddler, I'd love to hear them!

We're also going to try a supplement called Benecalorie, which is a Nestle product. In just one and a half ounces there are 330 calories, 33 grams of fat, and 7 grams of protein! If that doesn't put some weight on his bones, I really will beat my head against the wall.

I am really struggling with "being anxious for nothing". If I'm honest, I'm very worked up about the whole thing. I feel like I've prayed and prayed and prayed for God to take this worry from me, to allow Ethan to thrive, but I just keep getting it all thrown back in my face. I am thankful that Ethan does eat, that he wants to eat. I am thankful that the cardiologist has been able to rule out this being a heart issue, and I'm thankful for a separate team of medical professionals who are wanting to do best by Ethan. Heck, I'm most thankful that my child is even alive and breathing today, and that we have this issue to deal with at all. But, I'm frustrated, and I don't want to be.

I want us to trust Ethan. I want to trust his body to tell him when he's hungry or thirsty and I want to trust that he'll relay those signals to us. But, the truth is, when you've got a kid like Ethan who has had so much stacked against him in the way of eating, that's so hard to do.

So, I'll just keep doing what we're doing, plus some. I'll keep concocting bizarre recipes to maximize his fat and caloric intake. I'll keep offering him chocolate pudding three times a day, and I'll keep sneaking pureed vegetables into his macaroni and cheese. Above all that, I'll keep praying. I'll keep begging God to grow my son into the healthy and strong person his heart needs him to be, even when it feels like I'm not being heard.

8 comments:

Jenn said...

Joye, I am so sorry about all this. I know you must be so frustrated. Sam has never been over the 10th percentile in weight, but of course the rest of him is healthy, so it's not been a real concern. But things I have done in the past are giving him milkshakes or ice cream for dessert before bed, and I used to give him one of those pediasure drinks every morning before breakfast. But I don't know that that's any different from what you're already doing.

It's hard to find stuff that will add weight and also be good for the rest of him in the long run. I will be praying for wisdom for you and for Ethan to stay healthy and gain weight.

Faith M. said...

I am so sorry that you are dealing with this. Don't feel defeated. You are not along in this struggle. The speaker for our heart support group mtg last night was a dietician from our CICU and step down unit. She was very knowledgable and experienced and spoke to a room full of mamas facing the exact same struggles.
She definitely cautioned us with using nutritionists vs. dieticians. Nutritionists do not have any certifications and don't necessarily have any schooling. So, be sure to find a Registered Dietician who is experienced with CHD kids because their dietary needs are different from heart healthy kids.

Everything you are doing is what she recommended last night. Whole milk, heavy cream, butter, olive and canola oil, avacado can be added to foods, whole fat cottage cheese and yogurts, ranch dressing, and the supplements you mentioned. She said that carnation, ovaltine, and pediasure are basically the same and did say that the benecalorie was good stuff. She stressed over and over that it was most important to get the weight gain and that the fats would NOT hurt our kids. They are very different from adults with heart disease and there is not a concern with cholesterol and fats. Keep doing what you are doing. When you are shopping just keep looking for the version with the most fat.
I volunteered at a summer camp for CHD kids a couple summers ago and they fed them all the same normal foods that healthy kids would have eaten. This camp was run by our Cardiac Center at our hospital and they would not have fed them things that weren't okay for them to eat.
You are doing what's best for him. Stay positive. You will definitely be in our prayers.
Hugs,
Faith

Anonymous said...

This is one time when I can say, I know how you feel! :) When Ainsley dropped that last shoe, from 7% to an abysmal 3%, I wanted to cry and scream and God at the same time. I had prayed so hard for her to gain. She had been eating so well. And still her percentages kept going down. I have had to give this one to God, after all our testing came back normal, and just trust that he knows what she needs more than I do. I feed her, she eats, and we go day to day. On the days she doesn't eat, and fights me on every meal, I get that "I want to punch God in the stomach" feeling again. Why can't this one simple thing, eating, be made simpler?!? Why can't the simple act of taking in calories be made simpler by maybe making those calories actually stay with their tiny bodies? Really?

I got another blow when it became clear that Ainsley was strongly allergic to straight cow's milk, which severely limits our fat/protein options.

So... what we've been using to supplement is homemade shakes using avocado, whole milk yogurt, honey, and a little vanilla to flavor. Ainsley loves them, they pack a huge protein/fat/calorie punch, and she doesn't react to them like with whole milk.

I will be praying for you guys in this latest frustration. It is sooooo frustrating when you feel like you're doing all you can, and it just isn't working. Ethan will be fine. God really does know what he's doing, even if he doesn't let us in on it and we feel like he should since we're the parents. :) Pray for us too (like you don't have enough people to pray for already!). We are still struggling to keep Ainsley's weight from slipping month to month. When you live at 3%, there's not much further you can fall. :)

We love you guys! Keep your chin up!

Jeanne-Marie

Anonymous said...

The feeding issues we had with Audrey were some of the most frustrating we had to deal with. You could forget about the heart issues for a while but the feeding issues seemed to nag us all the time. On the healther side Audrey loved (and still does) Avacado. It has about 300 calories packed into one with all good fats. She also snacked on strawberry cream cheese on graham cracker sticks. She also liked quesidilla with beans and cheese and also black beans. And not so healthy side she ate the Marie Callander's fettucini alfredo every week, and she loved cheese puffs. We are now trying to undo some of the bad things, but feel so blessed that we've come so far. You will do it!!
Love,
Amy and Audrey Phelan

Anonymous said...

Hi Joye,
Just wanted to offer some advice about gaining weight the healthy way. Basically, you want a high-protein, high-calorie diet, which I'm sure you are aware of. Bananas, peanut or any kind of nut butter, full-fat cheeses, starchy vegetables such as peas, corn, carrots, potatoes, olives, etc., whole grain breads, red meat, dried fruit (higher calorie than fresh), kidney beans, maple syrup with whole grain pancakes, eggs, fruit in heavy syrup, thick yogurts, ranch dressing for vegetables... also, cooked foods tend to digest easier, it might help him eat more. I would also suggest buying organic when possible so his body can easily absorb the fats and nutrients without artifical chemicals throwing his hormones and digestive system off balance. Organic foods taste better anyway (organic cheese for instance... nothing compares!) so it may help him eat more.

Anonymous said...

Joye,

I read your blog and enjoy keeping up with your family. I don't usually post, but for this one, I thought I could offer something. Don't feel defeated. I have some good friends that had a premmie, Henery. Henery is almost 3 years old and my Sarah is bigger than him at 19 months. Henery doesn't like to eat. He's off his G-tube as well, but gaining very slowly. Henery was in the NICU at Duke for many months after he was born. The family continued to go to Duke for his care. About a year ago, the decided to change to UNC. They thought the Duke team was just to "comfortable" or routine in his care suggestions. Once they moved him to UNC, they offered different suggestions and care options and Henery did thrive. I must say that we felt the same about Duke with Jack's care. After a while, they just leaned on the routine and didn't want to try anything new or different. Don't get me wrong, I believe Duke gave Jack the best care they could. However, I'm suggesting you might think about a change. Just a thought. You need to do what you beieve best as parents. Now on another note, I know it's not healthy, but it's packed with calories, Nutella. Have you tried it? It's wonderful but fatting! Good luck with everthing. David and I think of you guys often.

Carolyn

Jen Foster said...

I second the Nutella. It's no worse than peanut butter (or not much worse, anyway!)

sdmemclark said...

Try coconut oil, yumm

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