Baby Ethan Update - 9/14/08

Well, it comes that time again!

So today we weaned him totally off all his pain meds. I can only imagine how irritable he must be feeling. Today the doctor said he seemed to be having a hard day, but when we were there he was smiling real big at us...so we had to disagree with her.

Little man is trucking right along. We have been able to get him from half strength formula to full strength breast milk...yay! With one setback. He started having bloody stool. So we put him back on formula. We have started him on his enzymes to help his little body digest his food. They come in little itsy bitsy teeny tiny beads that he has to get into his itsy bitsy teeny tiny belly. Basically it just puts the enzymes in his digestive tract that his body cannot produce. However, these beads will cause all kinds of sores if they get stuck in his cheeks. So it is paramount that we find a way to get these things into his belly fully. To just put these things in his mouth and drop some milk in there is not a very effective way to get these beads down. So we put them in applesauce. Yep, that's what I said...applesuace. Our son is the first in Deaconess NICU history to be spoon fed. Cool, huh! At least that's what they tell us.

Umm...What else!

So Tia and I have somewhat of a history of MRSA, and so poor Ethan has had to stay locked away in a special isolation room because of that. The hospital told us that if we got 3 negative cultures, a week apart each, then Ethan can come out of isolation. So yesterday we got the result of our last culture. Tia tested positive for MRSA. Ethan stays in isolation. This means that we still have to wear isolation gowns, gloves, and masks. It's not really a huge deal, he has just never felt our touch without gloves. He has never seen us without a yellow gown on. Other than that, we can still hold him, we kiss his little forehead (which I don't think we're supposed to, but no one has ever stopped us). That's all!

Some of you have asked what EXACTLY Cystic Fibrosis is, and how does one get it. I figure I will explain as shortly as I can (I know, I'm long winded).

Quote from the Cystic Fibrosis Foundation (http://www.cff.org/)

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond."

So how do you get it?

"Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.

The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene."

In lamens terms, a child will recieve a specific gene from each parent. If they recieve a negative gene from both parents, then they are negative for CF. If they recieve one positive, and one negative, then they are a carrier. If they recieve two positive genes, then they are positive. It is possible to carry the CF gene, not ever know it, pass it down to your kids and they would never know.

For example, I know for a fact that either my father or my mother, or both, have one of the CF genes. If they both have it then all four of us kids have dodged a 25% chance bullet. However, it makes more sense that only one of my parents have it because nobody that we know on either side has had CF. But it was carried from someone all the way down to me. The same is true for Tias family. Ethan was just the unlucky child that recieved both positive pairs from us.

OK, this is getting long again. I am going to stop for now. If you have any other questions, I urge you to take a peek at the Cystic Fibrosis Foundation website, or you are more than welcome to ask either Tia or myself.

Well, good bye for now. Thank you all again for all your support. Great questions from all of you, and we will chat again in about a week or so!

- Kip, Tia, Riley, and Baby E -