A not so typical Wednesday...

Every Wednesday morning I attend a precious Mom's Bible study at my church. Maddie spends Wednesday afternoons with her friends Max and Zeke. While Maddie is hanging out with her friends I use that time to spend with Fletcher. He's been having some problems with his left eye and as the nurse practitioner, Julie was looking at it I asked her to look at a bump on the top of Fletcher's head. She felt the bump and was very suspicious of it. She called Dr. Khichi (Fletcher's PCP) and he told her to order an MRI. Well, Julie wasn't convinced that this was the best way to go so she called a pediatric neurologist. The two of them decided Fletcher needed to have an emergency CT scan. They wanted to rule out water on his brain or a brain bleed. Needless to say, I was becoming more afraid with every bit of information I was receiving. I called Craig and he came up to the Center. Children's Hospital said they could do the CT scan if we got there immediately. That meant Craig and I would have to drive him there in our van. Normally this would be a problem because I don't keep Fletcher's car seat in our car, but remember last week when Fletcher was supposed to go to church with us? Well, I hadn't taken the car seat out of my van so it was in there and we were set to go. Thank you, Jesus! Well, we had a CT scan at Children's at the end of June and it was a fiasco! So, Julie went with us to make sure everything went well. I'm so thankful she went because although it took about 2 hours of waiting we didn't have too many problems. They had to do the scan two different times because the first one didn't get good pictures. In an attempt to keep Fletcher calm, Craig and I stood on either side of him and sang at least ten rounds of 'Old MacDonald'. Anyway, they were able to rule out the water on the brain and the brain bleed, but Fletcher is still going to have to have a MRI, hopefully very soon. The person reading the CT said the bump looked like a spongy bone and that it was about an inch and a half deep. That's weird. We're not completely sure we understand what a spongy bone is and how it would pop up in a day. So, we're thankful that he will have a MRI. The first picture I posted is from yesterday, if you look closely you can see a slight bump where his soft spot was. The others are from the second CT scan.

Yesterday at the eye doctor What a trooper, that's a smile on his face! Oh yeah, and he's supposed to be sedated!
Again, he's supposed to be out like a light!
Sweetest daddy in the world!

Fletcher is back at the Center and is resting well. Craig and I are so thankful to the Lord for this turning out not to be a nightmare. We are grateful for Julie being so aggressive and proactive today. We feel so much better knowing that Fletcher is being taken care of by such wonderful people. We would of course, appreciate your prayers. One, that we could find out what this bump is, two, that we would be able to get an MRI very soon, and three, for the doctors and nurses dealing with Fletcher will have wisdom and discernment.

Fletcher's story Part 1

I thought I’d start with Fletcher’s story at the beginning. Physically my pregnancy with Fletcher went well, unlike Maddie’s. I had high blood pressure and Maddie had to be delivered by emergency c-section. Emotionally, my pregnancy with Fletcher was filled with moments of fear. I spent a lot of time worrying that Fletcher might have Down Syndrome, or that he had a form of dwarfism. I basically borrowed a lot of trouble. Now, you need to realize we didn’t know there was anything wrong with Fletcher until the day he was born. We had such plans for adding this little guy to our family! Fletcher would be the only grandson on Craig’s side of the family. So, we did know one thing, he’d be spoiled rotten! We live in a small 3 bedroom house and the plan was to move Kayleigh into the smaller bedroom and let Maddie and Fletcher share a room. Every time I have decorated my kid’s rooms I paint one of their favorite scriptures on the wall. Kayleigh’s room is now pink and brown and 1 Corinthians 13:13 is on her wall. I painted Maddie and Fletcher’s room yellow, purchased semi coordinating bedding and began to look for the perfect scripture for their walls. I decided on Joshua 1:9 ‘Be strong and courageous, do not be terrified for the Lord your God is with you wherever you go’ I thought that was such a tough scripture and would be perfect for my tough little boy. I remember a morning that I was experiencing one of my moments of fear. I was getting ready for the day and I was panicking about my unborn Fletcher and the Lord brought Joshua 1:9 to my mind. And I felt like He was telling ME that that scripture wasn’t just a tough scripture to paint on a wall and that I was the one in need of some courage. I still haven’t finished M&F’s room. I have tried but it just doesn’t seem right to prepare a room for him when he’s not here. That’s a whole different story for a whole different day!

Fletcher in the NICU 12/30/04

On December 30, 2004 at 8:12 am Fletcher Samuel Burns was born via scheduled c-section. I remember being so emotional that morning, crying before we left to go to the hospital. When they were getting me ready for the c-section I couldn’t look at Craig without crying. He was waiting outside the operating room door as they were preparing me and every time he looked at me I would cry uncontrollably. I was a basket case! I just wanted Fletcher to get out my tummy so I could hold him! Well, that didn’t happen. Instead after Dr. Hager delivered Fletcher the nurses took him over to the corner of the room to get cleaned up. I only saw a glimpse of Fletcher and I could tell something wasn’t right with his skin. And the next thing we knew the NICU doctor was in the OR and she took Fletcher to the NICU. It seemed as though no one knew what was going on especially Craig and me! As they were putting me back together sweet Dr. Hager told us that Fletcher had some kind of rash and that they would do some lab work and try to figure out what was wrong. I did not see or hold him until an agonizing eight hours later. Since I had a c-section I had to recover for eight hours before I could go upstairs to see him. Someone brought me a Polaroid picture of Fletcher so I could ‘see’ him. I must have looked at that picture a thousand times. Craig and I knew in our hearts it wasn’t a rash covering his sweet little face. But each day we were in the hospital family and friends would say, ‘that rash is clearing up’ or ‘his rash looks better today’. Thankfully we had already prepared ourselves for the worst. That is pretty funny to think about NOW, that a so-called rash could be the worst possible thing wrong! After my eight hours of recovery Craig wheeled me up to the NICU to see my sweet boy. I wasn’t prepared for what I saw. Craig was so thoughtful and tried to explain everything to me. Fletcher was requiring oxygen so they had this clear plastic box over his little face. He had a tube in his mouth and he was hooked up to all kinds of monitors. I was able to hold him, but I was so afraid. I was afraid I wasn’t going to be able to bond with him. Afraid I’d hurt him. Afraid of all the wires and tubes. Afraid for his future and people being mean to him because he looked different. I was a mess. Well, I went home after four days in the hospital Fletcher did not. I will never forget coming home and seeing the “Welcome home Mommy and Fletcher” sign Kayleigh and Maddie had made. It was almost unbearable to walk in the door without my baby. I tried to be brave for the girls but it was too much. I told everyone I was tired and I went to my room and just cried. It was awful. I did not know how to do this. I hadn’t thought beyond the moment. I think I must have been in shock. Somehow Craig knew what to do. So someone took me to the hospital each day and dropped me off so I could be with Fletcher and each night after he got off work Craig came to the hospital. Unbeknownst to us, this was the beginning of what we now call our life. Fletcher was in the NICU for 19 days. He was there because no one knew what was up with his skin, his right eye would not open completely and on top of all that he would not eat. The doctors would not let us take Fletcher home until he could take 45 cc’s of formula consistently. That’s only an ounce and a half! It was sheer torture making him take a bottle. We had to work with a speech pathologist to learn techniques of how to HOLD his bottle so he would take the required amount. It was crazy to us. We had just entered a whole new world and we were clueless. We thought if we could just get him home, he’d eat. Not so my friends. Poor little Fletcher was miserable. He cried constantly and he wasn’t really big on sleeping either. Craig and I were beside ourselves. We did not know what to do with this baby who didn’t eat or sleep and cried all the time. But somehow the more he needed me the more I loved him.

Holding Fletcher for the first time

Daddy and Fletcher on day 11 in the NICU

Holding Fletcher on day 17 in the NICU

The first picture of all three of our children together day 7 in the NICU

Fletcher's first night at home. No tubes or wires!

Tough days...

The last two days have been tough for our sweet Fletcher. He has a very bad yeast infection around his trach and g-tube, on his tummy, under his left armpit and in his groin! UGH! Our concern is that the infection will get to his central line and that would be bad news! But, so far they have been able to keep it at bay. Right now they are treating it with Difulcan and a topical cream, they'll try this for 48 hours and if it doesn't clear up they will give him an IV anti-fungal. He's just been cranky and I don't blame him! Last night our church had Holy Halloween, the plan was to load up Fletcher and take him to the church. Well, that plan fell through when we went to TCC to get him ready and he just wasn't happy and nothing we said or did changed his attitude. Then as soon as we put him in his wheelchair he desated. That's when I said forget about it, he's not going anywhere. The girls were already at the church so Craig stayed with Bubba and I went to meet the girls. I was so sad not to have Fletcher with me. I'm so tired of not having a normal family where we can all go places together. And I hate that that's our normal. People don't ask where Fletcher is, because it's normal for him not to be with us. I know, having this kind of attitude doesn't help and you all know I don't dwell on this constantly but some days are just harder than others. And yesterday was one of those days! The girls had a great time. Maddie played all the games and bounced the night away in an inflatable! Kayleigh helped her youth group sell nachos and throw people in 'jail'! After Holy Halloween, Kayleigh had a blast trick or treating with her cousin. Well, that's all for now, please keep Fletcher in your prayers that this yeast infection would go away and that he'll stay healthy this winter.




PS I have started working on my 'Fletcher series', but I'm kind of struggling with putting this experience in words. So, it might take a little longer than I planned...

Little update...

I just wanted to take a minute to update you guys on Fletcher. On November 1st the units will close at TCC to anyone under 12. This is level one isolation and if we have a bad 'sick season' they could close the units to where only parents and grandparents are allowed in. If Fletcher stays well we will be able to take him out of the unit into a family room so Maddie will be able to see him. I'm praying he stays well this season! Isolation could last until April or even as late as May! UGH!

Another thing, as I'm sure you have noticed I haven't posted about Fletcher's PO feedings. Well, they haven't being going so great. As a matter of fact, today upon taking his first bite, he got choked and the food came out of his nose and for the first time, the food came out of his trach. Not good. So, no more food for Fletcher. I'm not terribly sad about this because it has been such a task to feed him and on top of that he hates every moment of it! So, we'll hopefully go see our ENT and go from there.

Lately I have been feeling quite nostalgic and I have decided that I am going to blog about Fletcher from the beginning. I feel like some of my new friends don't know Fletcher's story and I thought this would be a great way to catch you up! I will probably do it in two or three posts that way it won't be so intimidating to read. So, stay tuned for that! Bye for now!

My butterfly turned into a cheerleader...

Last night Maddie and I were invited to Harvest Fest at a friend's church. Maddie also decided she was over those butterfly wings! I have to admit I wasn't too crazy about them either! So, last night I began to look through her closet to find something for her to wear. She had the scrubs from last year and she said, 'Uh, no.' She also had a cute little grass skirt and she said, 'Too itchy.' Maddie was in a wedding last year so I pulled out that dress, thinking she could be a princess, to that she said, 'No, definitely no.' This kid is too funny! Then I found an OU cheerleading outfit to which she said, 'YES!!' So off we went to Harvest Fest! The two of us had a great time and we saw a few people that we knew. It was really cool how they had this festival set up, each room had a Disney movie theme! There was a 102 Dalmatian room, a Nemo room, an Incredibles room, Toy Story, Peter Pan, Lion King, Cinderella and Beauty and the Beast! How fun is that?

Maddie and Cruella DeVil (aka our friend Kat)

Maddie in the force field bubble (the Incredibles)

Maddie throwing a sponge at Nemo

A butterfly and a tiger...

Today TCC had a fall festival! It was lots of fun. Maddie and I went and fed Bubba and then we got ready for the festival. It was really neat. They had all kinds of little things for handicap kids to do that were switch activated, meaning the kids could touch the switch and bowl, or put candy in a sack (Maddie's favorite), spin art, and play a matching game. There was also a snack for the PO feeders, so Fletcher ate and drank something, not too sure what it was but he powered through it! They also did the limbo and the chicken dance! How fun is that?! Fletcher was not a big fan of the festival. He desated once and I think it was because he was getting hot! But, what's a party without an ambu bag! The pictures we do have of him smiling took and army of girls and a ton of tricks! I didn't get very many pictures of Maddie she was gone the second she walked in the door! We are having 'Holy Halloween' at our church on Wednesday and we're going to check Fletcher out of TCC and head over there. Maybe I'll get a chance to get pictures of her and Kayleigh.

My butterfly and little tiger...

Sweet tiger...

Fletcher and one of his roomies Andrew

Fletcher and his other roommate Carson

Eating something...

I also thought it would be fun to add a few pictures from last years festival. Fletcher was a frog and Maddie was a doctor. The whole doctor thing went over well at TCC everyone just loved it! She wore scrubs and crocs and had a stethoscope. We borrowed Fletcher's costume from my Steph. It was perfect except it was a hot one, too!

Fletcher the Frog and Dr. Maddie

Fletcher the Frog and one of his favorite nurses

My first blog award...

How exciting that I would be given an 'I'm Fabulous Award'! My sweet friend Sniz nominated and gave me this award! Obviously she thinks I'm fabulous and I think she's pretty awesome too! Thanks, Sniz! There are no rules for this award I can give it to anyone I'd like. I decided I would give them to Fabulous Mom Bloggers. I have chose three moms I admire a lot. My niece
Amber , my super funny friend Millie and one of my newest friends Susie these girls are truly fabulous moms!





Sniz also sent me another meme it's called Seven True Things About Me. So here they are...

1) I love my family and would do anything for them.
2) I love to laugh especially with my sisters!
3) I used to be a good listener, now I'm easily distracted.
4) I love getting a manicure and pedicure! What a treat!
5) I'm too sarcastic sometimes.
6) I'm easily overwhelmed.
7) I'm extremely insecure, but serve an amazingly confident God!

Now I'm supposed to tag seven people... Millie , Kristin , Kacie , Kayleigh , Kristin C , Christa and Traci Tag, you're it!