Diaper Rash!?!?!?!

Any ideas on how to treat real, red, inflamed diaper rash? Evan is miserable. He has never even had a red behind until now. It started Tuesday when he must have woken up in the early morning for his morning poo, then fell back to sleep, because I found a mess when he woke me up in the morning at 7:30a. It seemed to have been there for awhile. He's never done this before. He has had problems with yeast down there, which yes, little boys still deal with as well because it also lives in poo. This started as a yeast infection and I think it is now just a plain old diaper rash. His problem with yeast always started in the places that no longer exist because of his circumcision, but now it started from this one time waking up in the morning, sitting who knows how long in his poo. I already feel like a bad mom for lots of things, then I go and let this happen. I'm not sure exactly how I could have prevented it, but that's good ol' "Mom guilt" for you.
Ideas would be great!!

Christmas is coming soon!

Up on hands and knees!
Now, since he can crawl, he pulls himself up on everything!

This is one of his favorite places to pull himself up...the edge of the couch. He loves to sit on his knees, which he is in the process of doing right here.

He started crawling and finally got his 2nd tooth (1st one came in over two months ago!) on December 6th. Since then, he's gotten the rest of his teeth that come at this time...he has cut 5 teeth in a matter of two weeks!! He's done so much in the last two weeks for us to be proud of...crawling, tons of teeth, pulling himself up, cruising, and trying to let go of whatever he's holding onto when standing! He's a man now, not my little baby :(

We wish everyone a very merry Christmas! We will have a busy Christmas extended weekend, as we will attend one family Christmas gathering every day starting with Christmas morning and ending Sunday evening. No complaints, however, because we're eager to visit with family we don't see everyday. And we will miss Sheila and John, Paul's mom and stepdad, as they are in sunny Florida. Yesterday Huntington was -3 degrees. Florida was 73. This injustice has no words fit to describe it.


Here's a few pictures to enjoy of Evan...I'm sure Christmas weekend will provide plenty of opportunities for photo shoots, to add to the blog.

Surgery

Evan's surgery went really well. He didn't cry like they said he would coming out of the anesthetic, as I guess some kids really let loose. He was just himself! And, before the surgery, when they took him away, I was perfectly calm. I had thought and thought about that moment and got all upset nearly every time I thought about it. But the nurses and staff were all great, answering my questions and informing us about what was going to be done. And, when the nurse who would be attending the surgery came for him, he grinned at us, over her shoulder, all the way down the hallway. We dressed him in the little booties, and they even had an Evan-sized hospital gown, open in the back, of course! I found myself wishing I had a camera. Who wants to commemorate their infant son's surgery? Don't know what's wrong with me...

So, our crawling, two-tooth wonder (one top and one bottom...he definitely does things his own way) is slightly fussy and doesn't quite know what he wants at this moment as I write. He's watching a movie, and just might get to do so most of the day. His mom and dad, having gotten up at 2:45am to be in Indy by 5:30am, are anxiously awaiting their saviour, Grandma Rhonda, to arrive and allow some naptime!!!

Crawling!!!

Evan is crawling and is so excited to show it off!! Sometimes, he is so excited to be mobile that you can see his legs go faster than his arms. Funny!

I'm going to try to post a video. We'll see how that works out!

This is also the eve of his surgery...his "little boy" surgery. He is being circumcised tomorrow, very early in the morning, in Indy. We have to go to Indy because the pediatric urologist does not do surgeries here in Ft. Wayne because they do not employ pediatric anesthesiologists. And that is fine with me! We want him to have as little as possible, as we do not want him intubated (with a tube down his throat helping him breathe) because of the damage that has already been done to his trachea and vocal chords. If they do have to use more than a facemask or oxygen, they will use something different than the ET tube, and it will only go through his vocal chords and not down his trachea.

Anyhow, updates are sure to follow!



Pay no attention to the fussing baby in the background...it is Lucas. He was getting hungry.

Thanksgiving

A sort of journal entry from me (Misty), since I don't have access to any pictures right now :(

Thanksgiving means so much more to me this year, as I'm sure holidays always take on new meaning for those that were childless the year before. Listen to how I speak of it, though...as if he didn't exist last year. I have found myself several times this year thinking it was actually Evan's first Thanksgiving and Christmas. But it's not. And we do have fond memories of last year's holiday season...the NICU nurses and doctors, his photo shoots with Nurse Laura, the gifts we received for him, the time away from the NICU to be with family and friends we so missed. No, it's not his first holiday season, but it is certainly a different holiday season than last year. I have found myself emotional when engaging in typical, traditional events this holiday season, such as decorating for Christmas and having Thanksgiving dinner. I have so much to be thankful for. And it's not the good reports at the doctors, the milestones he achieves, or even his amazing smile that gets me emotional (most times). It's when we're doing something mundane such as grocery shopping, sitting down to dinner at Thanksgiving (not exactly mundane, but a very normal activity), and simply visiting with family that I find myself choked up. It is these very normal, traditional, day-to-day tasks and events that would be so very different had Evan's course in the hospital gone differently. He either just wouldn't be here, bringing a smile to my face nearly every minute of every day (except, of course, when he won't eat for me), or he could still be here but be a very different little boy, either physically or cognitively. But instead, I took home the sweetest, best behaved, smartest, happiest, cutest little man EVER. What did I do to deserve THAT? What makes me so special that I get him? Why do other people, who would make amazing parents, have to watch their precious little girl teeter on the edge of life for months on end, just to put her to rest in Jesus' arms? Don't get me wrong...Jesus' arms is a fine place to be, but why do they have to suffer and I get what I have?

I was so relieved today that we skipped one of our traditions of going around the table to state what we are thankful for. I was having one of my choked-up-because-we're-doing-something-normal-with-our-healthy-baby moments at just the time we would have been stating what we are thankful for. I'm sure I would have only been able to eek out the name Evan. Just Evan.

TWO Birthday Parties!!

Evan is so cool, he got two birthday parties!! At least, that's what he told me, so I'll let him think that. Here are some pictures from his two birthday parties. I don't have very many from the one he had in Walkerton that my mom threw for him, because my camera died!! Bad mom...

Again, he kept diving into the cake with his whole face!

Frosting face!

He LOVES the Baby Einstein caterpillar, so I got some 1st birthday stuff with it on it for him...his hat, bib, and a 1st birthday candle. He actually kept the hat on for awhile.

And his friend Lucy's mommy made him his cake...isn't it fabulous? I think she's for hire, so let me know! Each part of the body is a different flavor too! I was so excited to see this cake, and it got a big grin from Evan as well!

This is the only picture I have of him at his Grandma Rhonda's party. He still hasn't gotten to his cake yet. It was a Mickey Mouse head, with LOTS of black frosting. Thanks, Grandma Rhonda!

Happy Birthday Evan!!

It has arrived...
October 19th, 2007 in the late afternoon hours, found me saying farewell to a nurse, Julie, who was uncomfortable with some signs I was showing that we may not be able to stop my labor any longer. She was going home for the day and stopped by to check on me, and discovered it was possible my water had broken. She did the test three times, and two times it came up positive for amniotic fluid. She left, telling the night nurse what she thought, and I'm not sure what happened in the next few hours...except that I had visitors, Jeremy and Amanda Garner, and I think maybe some others but it is hard to recall. But anyhow, at 11:38pm they were wheeling me out of my home for the last two weeks. I had called my parents and Mandy, my sister-in-law, as I had been talking to her when they said they were trying to figure out what to do.

I guess the time that is kind of fuzzy is when my doctor came to see me, she was at another delivery at Dupont Hospital, and ran to Parkview main, then back to Dupont, then back to me. During that time, a neonatologist, Dr. Gilmore, came to speak with Paul and I, and a nurse, Laura, came in. Dr. Gilmore went over virtually everything that could happen to Evan. Paul was upset when she left the room, but I said that there were only three things she said that scared me at the time, out of the entire 45 minutes that she spoke: cerebral palsy, hydrocephaly, and I can't really remember the other. But after she had spoken to us, my doctor, Dr. Blackmon, came back in and asked us if we'd made a decision. We said we weren't sure. She said the main reason she was concerned about the situation was that since he was so small, if my water were to break and he tried to come before they could take me to surgery, his umbilical cord could slide out first, which would bend it in half, cutting off any oxygen supply to his brain. As soon as she said this, I was on board. I did not realize that this was a risk the entire time I was lying there! Then she didn't know if it should be done that night, in the middle of the night, or wait until the morning. She checked me one more time...pulled the sheet up and took one look and said...that's it...I've made my decision. And now we're back to the part where they wheeled me out of the room.

I was so calm. I have absolutely no doubt in my mind that Jesus was walking right beside me the entire time. I had such an overwhelming feeling of peace about the whole thing. When they took me in, I knew about everything that would be happening to me. I had fretted over any needle being in my spine (epidural or spinal block) for the entire time I was on bedrest. I had wanted a totally natural delivery. But at that moment, I think I was comforted not only by the staff, my doctor, Paul, and of course the promise we have in Christ, but that I knew that in just one more day, I would not have to have that catheter in anymore!!! (I'm serious, people! It was that bad!) The spinal block was not a nightmare, but I did hate it and wish to never have any needle in my spine for ANY reason EVER again. I laid there and joked with the anesthesiologist, Dr. Blackmon, Paul, and nurses, and asked her while she was down there if she could do a tummy tuck. And she did!

When Evan Paul was born, at 1:06am, October 20th, 2007, he cried and was flailing his arms and legs like crazy. All I wanted was to hear him cry at that point, and it happened. Sometimes it doesn't, I'm told. But he wailed until they put the tube down his throat to bag him until they could get him on the ventilator in the NICU. They told me he weighed 2 lbs. 1 oz. and was 14 inches long. I was ecstatic. Most people hope for a 7-8 pound baby...I was hoping for at least 2 pounds! I was hoping to make it to 26 weeks...I made it to 26 and one day. Every day is counted in those situations.

But, enough about that day...fast forward to this day!! We have the happiest, healthiest (aside from a touch of asthma) little boy ever! We credit that to the Parkview NICU, our nurses, and our neonatologist, Dr. Gilmore.

We have had a great year with Evan and pray for so many more!!!

Pictures to follow, from his first birthday party at Grandpa Steve and Grandma Rhonda's house!

So much FUN!

If anyone would have told me how much fun I would have being a mom, I'm not sure I would have believed it. Or how much I'd laugh. I am constantly amused and entertained by Evan. He is hilarious! I'm sure that this is the woman behind the mommy goggles speaking, but seriously, he is the funniest, happiest, most easy-going kid I've ever seen. Now, either he's storing it all up for the terrible 1.5-3's (because other parents have told me the phrase "terrible two's" is seriously misleading...) or I have just been that blessed. I get the biggest kick out of the faces he makes, the sounds he makes, the way he sits, holds his head, looks at me, claps his hands, waves bye-bye, and the list goes on and on. I'm so in love with him! It has certainly been a journey, and if we speak regularly you already know my struggles with forming a typical mom and baby attachment, all tied in really to the traumatic end to my pregnancy. But let me tell you, that is resolved! It feels so good to feel like his Mommy.

Anyhow, on this day one year ago, I was still lying in bed, feet above my head, in agony not from contractions but from the foot incessantly stomping on my bladder. I'm sure I had visitors, as our bible study group took turns visiting nearly every day, so that I wouldn't be alone all the time. I was probably, at this very moment (11pm), verbally processing through all the emotions in my head to one of my night nurses. God bless them...if they weren't delivering a baby in the next room or running or charting, they were chatting with me. And sometimes they were running to the fridge for chocolate mint cake from my grandma or Baskin Robbins ice cream that Paul went and got me because it sounded good. Enough reminiscing...there are pictures to post!

We went to the park with Evan for the first time ever, and he rode in the swing. It was a character building exercise, as I hadn't remembered to bring wipes to wipe off the swing before he touched it. Given the chances that it was probably sort of clean, and the desire to see him enjoy the swings before it got too cold out to take him, I had to get over it. And not just me...Paul too!

Paul pulled him in his John Deere wagon. We pulled the removable seat from the double stroller and put it in the wagon so he would be secure. He LOVES to be outside, and loves to go on walks.

I don't think any explanation for this picture is needed...he loved the swings, and Daddy pushing him of course.

When we were just about to leave the park, Paul noticed that one of the three toys (a purple block, this red truck, and a neon green ball) was missing. Sure enough, on the way back, we found the renegade green ball, just sitting in the grass alongside the road waiting for a ride back home. After finding it, I kept watching Evan to make sure he didn't drop any others. Well, we get ALL THE WAY to the back of our property and Paul notices the red truck is missing. Now, the red truck's monetary value is roughly 33.3 cents. But it's sentimental value is way way more than that. So, I turned around and walked back up the trail to the pond, around the back of the pond to the road, and up the drive to the road, still not finding the red truck, as I was certain he had "just had it!" Well, it must have been seconds after rescuing the ball that he dropped the truck. And here it is. Waiting to be rescued as well. The little stinker was dropping his toys along the way like little bread crumbs!!!

Off topic: Presidential Election Vent time...

So, as I've become an adult, and believe I am a little more mature than my high-school-age self, I've come to wonder WHY IN THE WORLD is there SO MUCH EMPHASIS on the presidential election, when truthfully, he doesn't do near as much decision-making as our congressmen and women. THEY are the ones we should be concerned about...their voting records, the issues they stand for, etc. But instead, all of the importance is placed on the glorified popularity contest that is our presidential election. This election is the silliest display of two bumbling idiots (will I get hauled off to Guantanamo Bay for saying that?) trying to win your vote with whatever they feel will get them elected. It's like the ditz campaining for class president who says, "If I'm elected class president, I'll get rid of tests! I'll make sure the cafeteria food is nothing but pizza and fries, and I'll shorten the school day by two and half hours!!! Vote for ME!!" All the while, she has ABSOLUTELY NO power to do ANY of these things she's promised. And everything she's said is nothing but pandering. When our candidates want to do nothing about our borders, it's not because they don't care whether our hard work is a joke for letting people illegally live here on our tab. It's because they want that particular demographic's vote. When they say they will create all sorts of new programs and reform ailing ones, it's (most of the time) not because they truly care that my child gets more funding for therapeutic services or that our elderly get a break on prescriptions they need to live a quality life. It's because they want the votes of those interest groups. They know they will not have half the power they need to accomplish anything. And that is disgusting.

October 8th...

And today marks one year since I was rushed to Parkview Hospital in Fort Wayne, when Evan tried to make his grand entrance 16 WEEKS early instead of 14 weeks. My aunt Brenda has always said, "He just has things to do" when talking about his early birth. And that is certainly true!
After the traumatic catheter insertion and ambulance ride, I was taken to Labor and Delivery at the Parkview main campus. After getting me to my bed for the next 12 days, several nurses were called in to attempt to put my bed into "Trendelenberg" position. This is a position in which the bed is still completely flat, but tilted on end so that my feet were above my head, taking pressure off of my cervix, which Evan was so determined to come through. It would seem that this was awful, but that was not the worst part of my stay. The worst part was that Evan had one foot on my bladder, stomping on it with the catheter in, and the other wiggling around in my open cervix. I told the nurses that his stomping on my bladder was making the catheter move in and out, but they didn't believe me. One nurse finally realized that was certainly what was happening when she was emptying the bag and she felt the tube move several times. She was one of my favorite nurses, Nurse Jan.
Anyhow, once they got the bed into position, I noticed that they had turned on a bed warmer...you know the kind they place the baby in right away. I understand that this is protocol, but nevertheless, it freaked me out. It was then that it really sunk in what was happening to us.
So, this began my journey to becoming a preemie mommy. I'll spare most of the uncomfortable details of being completely bedridden in a hospital. You can figure it out. But really, I only had to lie there 12 days...some women end up doing so for much longer than that...months even.

One scary thing I do want to share. Until you are placed in a situation like this, and it can be any trauma, really...you really don't know yourself at all. The very deep, dark places of our humanity can come through, and when certain thoughts are voiced, people that have not ever had to face these things think "Don't talk like that," or "How could she say that?" Well, I want to share how disorienting it was to feel two very different emotions so strongly, to be so fully passionate about two extremely differing desires: I wanted to stay pregnant, for as long as possible, so that Evan had the best chance possible, and I could take home a perfectly normal baby. But I also felt, just as strongly, that all I wanted was to be out of that bed (mostly just to get the catheter out, really) and what that meant was Evan would have to be born. I wished he would just come so that it could be over for me, even though his problems could have been lifelong, or even fatal. It's just a part of being human, and the deepest, darkest part of me that is so incredibly selfish that at that moment I wanted to trade two weeks (potentially three months) of my discomfort for a lifetime of heartbreak, pain, medications, surgeries, and possibly death for my baby.
That feeling eventually subsided, after a couple days. All I wanted then was to have a normal baby, for him to stay in there as long as possible.
But then there were similar feelings at different times in the NICU as well. But, anyway, I just wanted to share, because that was something I was thinking probably right at this very minute exactly a year ago.

October 3rd...should I just stay in bed this year?

I'm going to chronicle the day I had exactly one year ago...it's long, just to warn you!

October 3rd marks one year since the first signs of trouble in my pregnancy with Evan. It was exactly a year ago today, that all through the early morning hours I lay in pain on the couch, thinking that it was only the start of the third-trimester-woes of childbearing. The pain came and went, which is such a dangerous attribute of pre-term labor, because it deceives you...you think that when it goes away, that it was nothing. I had not been feeling great the previous evening, and decided to stay on the couch that night. The pain was very very low, but sometimes would radiate from my lower back around to the front. And sometimes it was very similar to gas/diarrhea pains. I truly thought that's what it was. But everything was normal in that department when I'd visit the restroom. (Sorry if this is TMI!). So, Paul went off to work and we planned on my going to Wabash to see my clients, then meet him at his new job for lunch. He had only been working there for two days. I was excited to do lunch with him, so I just kept passing off the pain as digestion issues. I got ready for work, then sat on the couch, made a few calls to those that had been previously pregnant and delivered, asking them what their labor felt like. I decided to call my OB, and the receptionist convinced me to let them look at me. I called off my morning clients, but still had afternoon clients, and was planning on seeing Paul for lunch. Dr. Stamm did a cervical exam, and said that it didn't really feel like I was dilated, but wanted an ultrasound just to be sure. The ultrasound showed "funnelling." Funnelling of the cervix is what happens prior to dilation. The bottom of my uterus was starting to open, but hadn't yet. He placed me on magnesium sulfate by IV, and had me stay the night in the hospital in Huntington.
One of my favorite memories of the day was when I called Paul to tell him what was going on, and urged him not to come see me until his work day was over...he had just started for goodness sakes! He had two weeks without pay prior to this! His new co-workers, bless their hearts, thought they needed to help him understand that my telling him not to come was actually my warning him that if he didn't come see me, there would be hell to pay. With most women, I think that is what that may mean...but with me, I was serious. I really wanted him to stay! Of course, at this point, I had no idea what kind of danger Evan was in.

So, I stayed overnight, and went home the next day. I spent the next three days in pain off and on, taking meticulous notes describing it. We visited labor and delivery one more time because it still hurt. That was Saturday night into Sunday morning. Then October 8th, I went in for a follow-up appointment with my OB, who checked my cervix and said that I hadn't yet dilated, but felt more effaced (thinned out). Another ultrasound, just to be sure. I almost declined. Praise the Lord I didn't. The ultrasound tech chatted with me, very casually, while conducting the ultrasound. I found out later (she's a cousin of one of our primary nurses, Laura) that she thought I was going to deliver right on the table after what she saw. She WALKED me back to L&D, where a nurse told me to get undressed and provide a urine sample. I asked her if I was going back home. She looked at me with her eyes as round as half-dollars, and said, "let's just wait until the doctor gets here." He did a sterile exam, which meant visually looking at my cervix through the speculum, aided by this very bright light.

I was 3 to 5cm dilated, with bulging membranes stretching 5cm outside my cervix. I immediately started crying. If this is all foreign to you, picture a large water balloon (Evan's amniotic sac...it holds the "water" that he floated around in). Then place the water balloon on top of a small cup...the balloon will stretch into the opening of the cup. This is what was happening to his amniotic sac, but it is much thinner than a balloon. The balloon could break at any time. Remember I was only 24 weeks along right then, slightly less than 6 months pregnant (a month is not 4 weeks long...it's roughly 4.4 weeks long). Dr. Stamm looked at me and said, "Okay, Misty, this is it. You're going to Lutheran. We'll get you ready for the ambulance ride, keep you on the magnesium, and pray for the best." Paul rushed to the hospital. He was crying, and asked me if Evan was coming right now. I said no. I was still sort of in denial, but still very scared.

I will never forget the absolute idiot nurse that tried to start my IV for the ambulance ride. Now, don't get me wrong...I LOVE nurses. I LOVED Evan's nurses. I LOVED my nurses. But this one. This one was a treat. She rubbed and rubbed at my veins, turning my arms over and over, looking at my feet, trying to prep them for entry, then dug around at least three times in each of the four sites she attempted, still not able to get a vein. And the worst part about it was that the whole time, she was looking over her little glasses, talking through her nose, going, "Nope, I just don't see one. Well, hold on, let's try this one," all the while rubbing at me. I'm a very easy patient. Really...I can admit it when I'm difficult. But I'm a dream come true...the entire practice of doctors (8 of them) that dealt with me during my bedrest in Fort Wayne said so. But I so seriously could have decked her one. Finally the nurse manager, a man in his 50's, came in and got it in the first try. The bruises she gave me lasted through to Thanksgiving. AND she had blown all of the sites that they could have used while I was on bedrest in Ft. Wayne! Then she was the one that had the priviledge of escorting me in the ambulance. Goody!

I'll spare the details of getting a catheter for the first time ever. Let's just say, I could have sworn it should have been coming out of my nose by the time she was done inserting it.

The ambulance ride was a blur, as I was hopped up on magnesium sulfate, which makes you very tired. They took me to Parkview because the doctor at Lutheran was unavailable for three more days. I'm SO GLAD for that. I LOVED my nurses, and the NICU at Parkview. I was wheeled into room 394 in Labor and Delivery, and stayed there until October 19th, 2007 at 11:34pm, I was taken to the operating room for an emergency C-section.

I think I'll reminisce about that day when the time comes.

Thanks for listening (reading)!

Great News!!

We went for a follow-up appointment at the pediatrician today, to be sure he was over his ear infection and cold. The doctor said that he was over all of it. But that wasn't all...he said:
1. Evan doesn't necessarily need his RSV injections this year.
2. If he does get RSV, it shouldn't mean more lung damage (as we had previously thought), worst case a hospitalization and oxygen until it clears
3. He also said this: "I think he's doing wonderfully...he is the poster child for how you want this all to go, being such an early preemie." I almost cried.


All of that being said, we do still need to be careful around crowds. We probably won't be visiting Walmart or the grocery store (Evan and I together, anyway) and it's likely we won't have him in the church nursery until next spring. Holiday season will be difficult, but we don't plan on staying home from family get-togethers! We've earned the right to celebrate the holidays as a family, with our families, darn it!

And after January 1st, when a new insurance deductible applies, we'll probably get pretty strict, as we really don't want to start off 2009 with new bills to add to the ones we are still paying from his first hospital stay.

But, this was such great news, I just had to share it.

A little break...

I'm taking a little break from the guys (Evan and Lucas) while they are happily entertaining each other in the exersaucer and jumperoo. I just have to say if you are thinking about babysitting in your home, call me...I'll tell you that its much more work than actually going to work! I thought it would be easier than this! Actually, it's not bad, but getting used to another child and dividing attention and the constant feeding, napping, changing, cycle gets a little crazy. Then on top of it feeling like since I'm home I need to keep up on the house (which, if you've ever been to my house, you know that means only the essential things get done...dishes, laundry, occasionally picking up!). And believe it or not, it's much easier when they are on the same schedule and need everything done at the same time. Now, someone might protest a bit, but at least the other one is getting their needs met until I can address the other one. And it's actually easy to feed them both at the same time. I prefer it, because if their schedules do not coincide, one of them is irate that the other is getting a bottle, even if it shouldn't even be time for them to eat yet!

Anyhow, enough ramblings about my day.
We just returned last night from a weekend trip to Dekalb, IL where my sister lives. She works on the campus of Northern Illinois University (the one that on Valentine's Day someone killed 6 people, gunning them down in a lecture hall). We stayed at her apartment and spent Saturday with our Aunt Brenda and her family, Tim, Grace, and Anna, and our Uncle Keith at the Jonamac Orchard. It's a huge apple orchard and pumpkin patch. You take a wagon through endless rows of apple trees, all varieties, and fill up a bag with the apples you want. You can pick an apple to sample and it doesn't cost a thing! Evan had a great time hanging out with his Aunt Mandy and cousins and great aunts and uncles.
I'd love to post pictures, but I forgot my camera. Brenda took several, though.

Evan's birthday party in Huntington is going to be October 25th, 11:30am, at our house (I think). We may use the church, but it would be much more convenient to use our house here in Huntington. I'm just not sure we'll have room unless we can be outdoors. So, the weather might decide where we go!

Alright, nothing else really new here. Have a blessed Monday!

This is Evan with Kristen, Vivian's mommy. We miss Vivian, but rejoice that she is certainly in Jesus' arms. Kristen said that Evan will have to find a new prom date.
Evan with his "aunt Kimmy." For those that don't know Kim, she and Mandy and I grew up together, as her dad lived next door to us. We had a blast growing up. She was in town from Colorado and was able to get over here to see us!
This is Evan taking his first wagon ride. Mom got the wagon for Paul a few years ago at Christmas. Evan is in the removable seat from the double stroller so that he doesn't topple over!
Yes, I'm a bad mom...I sat him up here on the counter while I made his bottle. Notice the hotdog buns that have been violently shaken out of their plastic bag (yep, I let him play with those, too.) I wish I had captured the joy on his face when he did that. Notice also the measuring cup he has and is licking...it is from the sugar canister that he removed the lid from. You can't see, but there is sugar all over his clothes. Let's just say, in all of this exciting stuff to do, he completely forgot he was hungry.

Joel is home now, he was released on Saturday. He's still pretty sore, but very glad to be home. Thanks everyone for your prayers this week. It was certainly scary!

Update on Joel

Joel is doing well. He has visitors every night. Mostly his soccer friends, and family that lives in town. He's been moved out of ICU, his liver stopped bleeding, he's able to get out of bed now, and they are talking about discharging him tomorrow or Sunday. He's still pretty bored, but it helps to be able to get out of bed. He's still pretty down about not being able to play soccer, and that they're putting Jojo to sleep...he's my sister Mandy's cat, but we've had him since Joel was two, so Joel grew up with him. This cat is pretty unique. The quintessential lap cat, who also had several quirks to make him interesting and lovable.

Anyhow, pictures of Evan to come.
HE'S CLAPPING NOW! It's sooooo cute...

My brother Joel

Please pray for my (Misty's) brother, Joel, as he is in the hospital right now due to internal bleeding from his liver. He was taken down during a soccer game, in which he's a goalie, and the coach thought he could have broken ribs, but instead became concerned about his liver after awhile and his ribs weren't tender. He has a 6 cm laceration in his liver, which can take weeks to heal, but the surgeon that spoke to him said that he wasn't able to play sports that involve contact for 6 months. This greatly upsets him, as he has friends that are seniors that he won't get to play with again. He also can't eat right now, and one of his/our cats is going to be put to sleep this week when he gets home. He's got a lot coming down on him at once, and he's pretty bored at the hospital, since he's on complete bed rest until he leaves. Please keep him in your prayers. He's such a wonderful kid. Really...it's so easy to say that about your own family or kids, but this guy is the greatest.

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...

Prayers for Baby Vivian and her family

For those that keep up with us, I'd appreciate special prayers tonight for Evan's friend Vivian in the NICU right now. Her heart is close to failure, and we'd just like for you to lift them all up to Jesus right now. Her parents names are Kristen and Peter. They are amazing parents with equally amazing faith. Kristen and I have gotten to know each other after being put in touch shortly after Evan came home from the NICU. What is extremely frustrating, and we'll never know why this side of Heaven, but she did very well prior to some surgeries that were necessary for her to have, and then continued to need increasing respiratory support. As before, that's all I'll share to protect her family, but please keep her in your prayers. Vivian is a beautiful little girl who has touched so many lives.
Thanks, Misty

Vacation

Brianna and Evan

What can I say, I love the camera.
John and Sheila. I know John would be embarrassed to see the bandages are shown in this picture, but we're proud of him and Sheila.
Just Grandpa John and I having fun at the beach!
I love my Grandma!
Grandma Sheila and Davin, and Grandpa John and Evan before we left for the airport. Davin and Evan are wearing matching outfits from Grandma Sheila

Moms and babies enjoying the ocean at Punta Gorda, FL
Mandy and Misty
Evan dipping his toes in the ocean for the first time ever! Look at me now, NICU doctors and nurses! I just can't be stopped!
My "at the beach" outfit that mom picked out. I have swim trunks, a surfer shirt (that really ended up being a hunky belly shirt) and a beach bum hat! I loved the beach.
The boys both needed a bath, so we thought, what the heck...a bath together would be fun! I think they agreed!

Evan, Paul, Misty, Mandy, Andy, and Davin in the ocean at the beach in Punta Gorda, Florida


We had such a wonderful time in Florida, visiting Paul's mom and stepdad, Sheila and John. John has been enduring a second occurance of leukemia, and will undergo a second bone marrow transplant in the near future. As that takes a pretty nasty toll on a person, we knew he'd be unable to travel any time soon and all of us flew down to Port Charlotte, FL to spend time with Grandpa John and Grandma Sheila. By all of us I mean Paul, Evan, and I; Andy, Mandy, & Davin, and Paul and Mandy's brother, Matt. So, five adults and two carseats with exceptionally cute babies in them, piled into a rented minivan and drove two hours down the gulf to their beautiful home in Port Charlotte, FL. We went to the beach, did some shopping, ate out a couple times, ate in a couple times, took a sunset cruise on a small boat, visited with some family of Paul's (Aunt Dannee and Uncle Steve, his cousin David and wife Carla with their kids Brianna and Jacob).



Brianna and Evan have a whole lot in common, as she was born at only 24 weeks gestation due to Carla having preeclampsia. Brianna was born at only 1 lb. 3 oz. and spent nearly 5 months in the NICU in Indianapolis at Riley Hospital. You'll see a picture of her and Evan together with this post. She is truly a miracle, never experiencing any brain bleeding, cerebral palsy, or lasting effects of her prematurity. She did have a monitor like Evan's, and was on oxygen for quite a long time once coming home, but now she's a happy, healthy six year old girl. Its interesting to look at her when you know the subtle facial characteristics that many micro-preemies have, you can sort of pick them out. If you look at the picture and compare her and Evan, you can see that their faces are structured alike. Their cheeks are chubby not out to the sides, but the chub comes forward. Their eyes are placed slightly in the same place, and their chins are the same. This is because she also had what the nurses affectionately called "toaster head." Preemies that spend so much time lying down on their sides have thinner faces and elongated heads for some time until their soft bones shift and develop while they grow and gain more weight. It is encouraging to see that Brianna has a full, filled out face now as a young child. While we remember Evan having "toaster head," his has definitely nearly corrected itself, but he has not been spared a crooked head from preferring to lie on his right side! Maybe you think its insensitive to say that, but I'm perfectly comfortable pointing it out because if that's all we got from his extreme prematurity, then I'm thrilled to death!



Anyhow, getting to speak with her mother Carla and visit with Brianna was a highlight for me, as it is very difficult to find other parents of preemies like Evan who appear to have only mild effects of the circumstances of their birth.







We had the greatest time with Andy and Mandy and Davin, and visiting with Sheila and John. They seem to be in great spirits despite the difficulty of dealing with a long-term illness, for John as well as for Sheila as a caregiver. Sheila helps John take care of his PICC line (a semi-permanent IV line) each evening. John isn't behaving as he should (as any man would) mostly because he works in the yard outside, and generally won't just stay put and rest!







We had an awesome time at the beach, of which there are pictures posted, and Evan and Davin had a great time getting to know each other better. Davin is extremely fond of Evan, and wants nothing more than to touch him and squeeze him and love on him. He couldn't get enough of him, watched him all the time, and even shared a bath with him! Mandy said that he's still looking for him, from checking out all of the other strollers at their airport once they landed in Nashville, to trying to get to his picture on their computer screen. I'm sure if Evan could tell us the way Davin can, that he'd do the same.







Evan seems to be doing so many more things now, just after the week of our vacation. He seems so much more alert, he loves to stand up, he's making more faces, and he even tried cereal while we were at Grandma's! He wants to be like his cousin Davin.







This is an incredibly long post, so I'm going to cut it short. Enjoy our pictures!

Pictures!

Hard evidence of his new skills...no such luck capturing his rolling over. Stinker!

This is Evan with the famous Dr. Gilmore. It took some begging to get her to pose with him, and you can see he's smirking because of it. He gave her a great big smile as soon as he saw her. Nurse Laura was jealous because he smiled at Dr. Gilmore first! In case anyone is wondering why Dr. Gilmore is famous, it's because most times that Evan progressed in the NICU, it was because of a decision or treatment that Dr. Gilmore made.

This is Evan with Nurse Jan, from Labor and Delivery, that took such good care of Misty in the hospital. She nicknamed Evan "Bladder Boy" because he was stomping on Misty's bladder and Jan was the first one to believe her that he was making the catheter move and as a result cause her extreme pain. Jan also gave Misty a back rub, so she of course earned extra points for that.

Among the new things he's learning includes how to charm Mom's socks off. One look at those dimples, and its all over.

I thought I'd sneak up on him and take this picture of him in first thing in the morning. He heard me coming.