Preemie talk on RSV

Evan's lungs are represented by the third picture. At the end of the very small tubes are little sacs (alveoli) that need to fill up with air, in order for his blood to get oxygen to the rest of his body. His tubes are smaller than a term baby, and therefore when full of the mucous that RSV causes, he cannot get enough oxygen to the little sacs, resulting in his needing hospitalization because he'll need oxygen and certain meds to open his airways.

He will grow new lung tissue until he's 7 years old. The most important time to keep his lungs healthy is until age 2, when his lungs will finally be as functional as a full-term baby's lungs. This is dependent upon his being healthy through this next RSV season, October-March/April. It was quite an accomplishment to keep him healthy when he came home from the NICU through the end of the season last year, and we were successful because we didn't take him anywhere there were crowds of people (church, Wal-Mart, etc.) and we had guests wash their hands when coming in the house and asked them to stay away if they were sick. However, it is still possible that even though most of these precautions will be taken this season, he could still get RSV somehow. Please follow the links below to learn more about RSV and how it affects preemies.

http://www.preemiecare.org/rsvfaq.htm
http://www.preemiecare.org/LungsTrees03-4.pdf

We are not being overprotective. This is standard care for a preemie. And our job.

More pictures....

I love my piano that mom got me. My favorite thing to do, of course, is bang the heck out of it!

This is how we clean Evan up after a particularly messy meal. Thanks Aunt Brenda! (She bought me the shower head as a baby gift...absolutely invaluable!)

I just don't think that there are any words that are needed to accompany this picture. Enjoy!

This is Evan and his new friend, Lucas. I am babysitting for Lucas now that I've quit my job as a music therapist for Meaningful Day Services. I really do enjoy it, but the stresses of caring for two babies similar ages are great. I salute you, Mom! (Who raised twins while my dad, a trucker, was gone through the week!)

Evan is eating ice cream for the first time. It is strawberry. Don't worry, he didn't have an allergic reaction. I thought it was okay because they make baby food with strawberries in it.

This is Evan playing with his Aunt Mandy. She came to visit from Dekalb, IL for Labor Day weekend and spent two nights with us. Evan loved it!

Evan hanging out with Grandma Sheila and Grandpa John, at Aunt Mandy and Uncle Andy's house. This was the weekend of Davin's b-day party!

Evan's cousin Davin is tearing into his first birthday cake! Davin turned one year old on September 9th. He was born on Mandy's birthday, so he shares his birthday with his mommy!

Long time, no see!

Scroll down and go backwards, because I posted pictures after writing the post and they ended up getting on there backwards, I think.

It doesn't look that bad, because I think it was squash or something lighter. But it had also sort of dried over the time I had let him sit and play, and tried to feed him from my spoon. So, even in the close-up, you can't see how dirty he actually was. It was bad. :)
He was such a mess! While we were easing him into eating foods, I had to just let him make a mess, feeling the food between his fingers, and playing with a spoon as I put food on it. Notice the trash bag. Needless to say, he got a bath just after this.
The first time Evan was actually excited to eat! In case you couldn't tell, it was carrots!
This is what happens when Grandma Rhonda gets him ready for bathtime.
Evan's trick in the swing. I was in the shower and came out to find him hanging off the side of it. It had stopped swinging because while these battery-powered swings are self-sufficient, they also depend on an even weight distribution. Evan obviously had thrown it out of whack.
Evan playing with his cousin Davin while we were there at the 4th of July. We enjoyed fireworks downtown Nashville, watching them from a distance on a bridge. Evan loved them.
His "before my first haircut" face. We had to cut his hair because he was growing a mohawk. And before you judge me for cutting my baby's hair while he was so young, you must know that I think the mohawk is the most back-woods hilljack thing you can do to your kids. AND I'm not into the three-year-old with a mullett look, because his mom was not willing to cut his hair!
His "after my first haircut" face.

Here is Evan with his adoring fans, Lindsey, Ashleigh, and Mackenzie. They are Laura's daughters, one of his primary nurses in the NICU. We went to the zoo with them back in June. It was a lot of fun, and Evan really did enjoy watching the animals.

SO sorry its been so long since we updated! Blogspot changed something with the log-in or username or something and for awhile I couldn't get in, and didn't have the patience to reset everything. I kept waiting for it to be resolved, and kept trying to remember my password, but ended up resetting it just now.

Anyhow, Evan's been busy since the last post. He's finally learned to eat baby food very well (if he likes it!) and is now rolling over both ways and can sit up totally independently. His therapist from First Steps continues to work on his putting weight on his arms so that he may crawl soon. He very adamantly resists this. He wants to stand and bounce ALL THE TIME!

I'll post some pictures so you can see what he's been up to!
I feel like there should be so much more to say, but with it being nearly three months since I was able to post, I feel like I don't quite know what else to say!

We just spent last weekend at his cousin Davin's 1st birthday party! His birthday was Tuesday, Sept. 9th (and so is his mommy's!). It was a great time to spend with everyone. John and Sheila (Evan's grandma and grandpa Briles) flew in, and all of Andy's immediate family and their respective families were there.

Hope you enjoy the pictures!

A trip to the zoo!

Well, last week Evan took his first trip to the zoo. We were invited to go with one of his NICU nurses and now friend, Laura, and her three girls. He was treated like a king! I didn't even realize it, but he is definitely able to enjoy the zoo...he loves the outdoors, and is beginning to notice and watch our cats. At the zoo, he loved the aquarium with the sharks swimming all around and the colorful fish. He also enjoyed the log ride! I will post pictures on this entry soon.

We also spent the weekend with my parents in Walkerton, as we had a wedding to attend. Evan got to stay with his great-grandma and wore her out entirely! Then the next day, since our anniversary was the 23rd, Paul and I got to get away and his aunt Mandy watched him. Much fun was had by all when they got to feed him his rice cereal.

An update on Vivian:
While the last couple weeks she's done very well, and was scheduled for a surgery this week, over the weekend she took a turn for the worst and is now sedated and her respiratory needs have increased so much that she is on the oscillator, which is a step up from the ventilator, providing even more support. Please pray for her and her family.

Hot stuff

If you look closely, you can see that I just finished my first bowl of rice cereal. Well, I finished smearing it all over my face, that is.
Yeah, I'm pretty hot stuff these days. I can grab my toes, sometimes even put them in my mouth. My favorite time to do that is when Mom changes my diaper. Then she can't get the diaper on right. I keep telling her that this is only the beginning...

Evan is doing pretty well lately, though he's decided to only eat about half of his bottles sometimes. Supposedly its because of his reflux. If he keeps it up I'm taking him back to the doctor. And they can tell me again that as long as he's gaining weight and making 6-8 wet diapers a day, he's fine. To me, I feel that OF COURSE he's wetting 6-8 diapers...he's still eating even though it's 1/2 to 2/3 of what he's supposed to, so he's going to pee. But will he grow? And not just increase in weight, but will he grow in height and have healthy bones, and the list goes on. There's more to growing a preemie than weight, and I feel like that's all that matters to them.

Vivian update: While she's doing well some days, she's still on ventilator support and her oxygen needs continue to go up and down. She did get pnemonia again and is having difficulty related to that, though it appears she is fighting it off. Its still going to be a long road for her and her parents, so continue to keep them in your prayers...Thank you to those who check in on her!

And a big THANK YOU to those who check in on Evan, too!

We've just started to introduce solids (rice cereal, veggie 1st foods) and it's not always successful. I'm not sure what to do with his deciding not to eat his formula, because the formula has so many more calories than the foods, I'm not willing to try the foods more than 1x/day. So, he's not getting as much practice as he probably should have.

Anyhow, hope everyone is enjoying the warm weather!

More on Vivian...

Baby Vivian is having a rough time again. Her parents and doctors think that its possible she is trying to tell them that she has had enough. Please pray for Peter, Kristen, and Evan's friend Vivian. They're so weary after their 18 weeks in the NICU. Vivian was born on January 31st, so you can imagine how emotionally and physically drained they must be. Evan was there 12 weeks, in comparison.


Almost uncomfortable to put in the same post, but relevant if you keep up on us...
I (Misty) will be in Chicago this weekend for some training for work...Advanced counseling skills for use in the hospice setting, something I'm interested in doing someday. I have to do this every so often, kind of like how teachers have to get continuing education units (CEU's), I have to get continuing music therapy education (CMTE's) ...100 to be exact by Feb 2010, and I have zero as of right now! This class is worth 20 CMTE's.

Consequently, Evan will be home with Paul for the entire weekend! I'm not sure what condition I'll come home to find Evan in (or Paul, for that matter). So, Evan and his daddy will be bachelors this weekend. Some moms have serious anxiety over leaving their babies with their husbands, but I certainly do not. Paul is the best dad ever. He plays with him, takes him outside, talks to him, and all of the things that you would hope a dad would do. He's the best.

New pictures later...

Late night rambling

So sorry for the lag in postings.
I have an update on Vivian...she is doing much better! I'm not sure if she would be considered "out of the woods" just yet, but she's had some really good days lately. She is still ventilated, and her heart and lungs are consequently still pretty weak. But she seems to be doing better, so Evan thanks you from the bottom of his heart for your prayers!

We have made it through our first cold! Evan caught a cold on our trip to Florida, and so did I (Misty). Evan has been over his since the end of last week, and I have just now gotten over it. He had to do breathing treatments every four hours for awhile, and at one point we considered taking him to the hospital, because of course, it was a weekend and the evening when I (with the help of his Nurse Laura) decided he was having too much trouble breathing. We waited it out and he went to sleep fine and was not breathing too quickly in his sleep, so we avoided the ER during our first cold, so I'm pretty proud of myself! Some of his nurses and neonatologist still get some pretty silly calls from me when I have obsessed over something long enough and can't let it go until I talk to them. And when I say 'long enough,' I mean days, or weeks, not just hours.

We really don't have much news except that Evan likes to play with his feet, has discovered he has a tongue, and is now officially eating rice cereal. He's such a big man. Does everybody realize he's going to be 8 months old this month? 5 months corrected age, but 8 months!!! Only 4 more months until he's a year old! All of my memories of his birth and NICU days are still so vivid that it doesn't seem possible that its been that long, or that it is summer now. When three months of your life are all but sucked away, it takes forever to recover. Like a black hole. When I hear about something happening in March or April, I still think that it was "last month" or so. Maybe that's what having kids does to you anyway, whether they are in the hospital for three months or not.

More pictures to come soon...