Rare Disease Day: Why I Quit Saying "As Long As He's Healthy"

When you announce you're pregnant there are certain conversations you can expect to have multiple times. The main one starts with the question "Do you want a boy or a girl?" That always seemed like a silly question to me since you don't get to decide. But moving beyond that. After you've either expressed a gender preference or said you don't care someone- either the expectant parent or the other person- almost always says, "As long as she's healthy." Everyone smiles, agrees that's most important, and moves on. 

But what happens when the baby isn't healthy? I always want to stop the person and say, "What if he's not? What then? You going to send him back?" It also seems like a ridiculous statement (that I've been guilty of saying) because you can't do anything about it. If your baby is not healthy, you have an unhealthy baby. He's still your baby. 

No one expects to have something wrong with their baby. Our first was born and appeared perfect. We were thrilled and took him home. But he wasn't healthy. He almost died multiple times from a rare disease that we had never heard of. 

I wouldn't trade our boy for any other kid, healthy or not. 

The point isn't that your baby is healthy, although who wouldn't prefer that? The point is that it's your baby. When you got pregnant you signed on. This is your child, come what may. Being a parent grows you up. That's how it's supposed to work. You need to grow up when you become a parent. 

A month in the nicu and looking forward to a life of rare disease will do that. You'll grow up because you have to. You'll learn to measure formula, change g-tubes, and argue with the insurance company. You'll see the inside of a doctor's office more than the average family. You'll avoid those germs and skip the anti-vaccination arguments because the consequences can be so serious.  

You'll be better because of it. You'll deal with the setbacks, the unexpected, the delays. You'll discuss your child with doctors and guard him fiercely from people who don't understand. You'll give in to fear sometimes and then you'll get back up. 

You'll quit saying, "As long as he's healthy" to expecting parents. 

We've had two more children, both boys, since our first was born with IVA. With a genetic disorder there's a 25% chance with each pregnancy that the baby will have IVA. This means we have an amnio. This means we have a late amnio in case of complications.  This means we hope and pray I don't have the baby before we get amnio results back.  So far no one has asked, although I'm sure some have wondered, why we had more babies. Here's my answer: no one is guaranteed a healthy baby. It doesn't matter if you are carriers of IVA or not. 

We love our boys. Even if they're not healthy. 

Halloween Baby

Caleb Andrew arrived (15 days early!) on October 31, 2014 at 12:57 p.m. He was 7 lbs, 7 oz. and 21 inches long! 

He looks just like Justin and the other boys when they were born. 

(This might be my favorite picture ever!)

The big boys are in love with him and we are home resting and enjoying our family now! We even found out three days before he was born that he does not have IVA. That's some close timing! God has greatly blessed our family and we are thankful for all He's done for us. 

We'll be back to regular posts (that I've pre-prepared) on Thursday but for now, you know what we're doing! 

Metabolics

Justin, Micah, and I went to Columbus, OH, this past weekend to attend a "Cooking Low-Protein" workshop. We made it into a mini-vacation and had a great time! Some college friends of ours live in Columbus and graciously opened their home to our family. We had a great time catching up with them!

The workshop was sponsored by Vitaflo, a company that specializes in metabolic formulas, and conducted by Malathy Ramanujam. Malathy's son has homocystinuria. She has actually developed her own line of products that are low-protein and sold at www.tasteconnections.com . The workshop was mostly focused on making low-protein breads and other carbs.

Justin was able to spend some time talking the Vitaflo reps that attended the event. Vitaflo is actually based out of the UK and they are working on developing some new products but had not found many people in the U.S. with IVA. These two reps cover 8-12 states and do not know any other families with IVA in those areas! (The rest of the families there were all dealing with PKU.)

It was interesting to talk to the other parents that attended the workshop. I learned a lot about PKU and got several good recommendations for low-protein foods.

There is a similar workshop in Mason, OH, in December that we are hoping to attend.

A Day without Peas

At Micah’s doctor’s appointment last week we made some drastic changes to his diet. We are no longer putting Similac in his formula mixture and are instead getting the nine grams of regular protein from his diet. Nine grams may not seem like much but for a kid who only ate baby food and no meat it was! I was actually more worried about getting the nine grams in than going over! Ironic, huh? Who would have ever thought? Peas were our life-saver. One jar has four grams of protein and he loves them! So every day he has been eating a jar of peas for lunch, usually with something else. But as he has gotten used to more “real” food, such as bread and pasta and even some cheese, he has been getting more protein from those foods. Yesterday he had all nine grams of protein and no peas. At all. Probably a nice break for him. He has had 1/3 a slice of bread, some string cheese, part of a tortilla, some pasta, and then his normal fruits and veggies. He loved banana bread! Overall he still does better with table food if you follow each bite with some baby food. Otherwise he thinks he is a chipmunk and takes forever to actually swallow it. Justin said there was a problem when you washed down food with more food! I think he’s made remarkable progress this past week; I’m sure we will see even more in the next few weeks.