Monday, September 26, 2011

291 days home and we are scooting and standing…

Well hello again. I could fill your ears full of excuses for why its taken so long but really? Why waste your time. Just know that it has something to do with being busy, sick kids, messy house, lack of sleep. etc, etc. You get the gist. SO….lets get down to it!

Labor day weekend marked the 291st day that Braden has been HOME! If you haven't guessed it yet, he spent 291 days of his life in the NICU at Mercy so this number has a pretty large significance for our household. We can’t even being to write/say how thrilled we are that Braden has done so well since coming home. Not to mention the fact that (knock on wood) he has stayed home since being discharged. We have definitely had some rough and tough times with illnesses being passed between the boys, nursing vacancies, nursing stresses, near death experiences at the hands of some untrained “professionals” but I'm happy to say that our boy is one of the strongest people I have ever met. He is one tough dude bundled in one tiny package and we couldn’t be more proud of him. We are really the blessed ones to have the honor and privilege to be his parents! And,  I know I always say this, but we wouldn’t be here if it weren't for the team of nurses and doctors he had at Mercy…I could go on and on but you guys know how much we love and appreciate you…AND miss you!

So big things have been happening. We had a big party for Braden with our friends and family to mark his BIG milestone and we had a great turnout. Thanks to everyone who could make it. He was a stud as always and wore his “291” shirt we had made for him for the March of Dimes walk. He looked pretty good in it I must say. He got a haircut that morning which he hated. It took 3 adults to hold him down while Adam buzzed his head but it paid off. 

We had a bad week a couple weeks ago with a nasty cold that passed thru the boys. It started with Evan being up all night with a stuffy nose, then Jacob’s nose ran like a faucet. Of course, the day before this, I asked Jacob to tell Braden bye in the morning and instead he gave him a huge, slobbery, wet kiss on the mouth so needless to say, 2 days later, Braden woke up drowning in his secretions with a low grade fever. Fast forward two days and he spiked a 102 fever with yellowish secretions and off we went to DSM  for chest x-rays and antibiotics. Lots of neb treatments and sleepless nights later and it turned out, thankfully, to be just a virus  and it ran its course. Unfortunately, it seems to be making a comeback with Evan and Jake so we will be on the lookout for B!

Braden has made some huge milestones as of late. He can, with the help of some upper body support, stand on his legs for 30 seconds at a time. He is SO proud of himself too. You can tell how proud he is with his ear to ear grin. He was even yelling at his brothers the other day like “Hey you goofs…check me out!” Evan was pretty excited and was clapping along with him. It was so sweet, he said “Wow! Good job buddy!” He is such an awesome big brother. He also whipped out a new one for us yesterday and started scooting on his back to get to Evan. He got so far that he ran out of slack for his vent tubing. This could get interesting! We will have to ask around to our Campomelic friends and see what they did to get around this! He was so happy that he could be mobile that the second he reached Evan, he grabbed Evans legs and started laughing like “HA! I got you now!” Evan of course scooped up all his toys and pushed them farther out of Braden’s reach.  Nice Evan! I’d post video on here but for some reason I cant get signed onto YouTube to do that. I’'ll keep trying though.

OH! And did I mention that he talks back? Turns out you can be sassy using sign language. Braden’s new trick is to get attention by yanking his tubes off his trache which causes all his alarms to go crazy. Sometimes though his tubes are on pretty tight and if he tries hard enough he could pull his entire trache out. I was sternly telling/signing to him “NO! STOP!” and that little stinker smiled up and me, nodded his head, and signed “YES!” and continued to yank. He’s learning to be naughty from his brothers!

Today we are at Mercy so Braden can get a new custom trache. This trache is about 2mm longer than his old one to see if we can get bypass the small area of tracheomalaysia just past his trache. Not sure why, but they scheduled us for a 23 hr observation. Well we just did the change and he seems to be doing great so we will be out of here by 2pm. He is happy as can be here until they come in to take a blood pressure and then he just throws a hissy fit and screams bloody murder. They have yet to get one to take and they've tried 8 times.

Now onto the other boys. Evan is Mr. Smarty-pants and LOVES being outdoors with his daddy. He loves riding his bike, finding “cool spiders” and collecting rocks and acorns. His new insults are  “You Mr. Tato-head” and “You are a beaver!” He thinks he's pretty clever! Many a car rides involve him and Adam trading insults at each other like “Oh yeah? You are an anteater” or “Oh yeah? Well you are a centipede!” Its good times. That’s more tolerable than Jacob who just yells “MAMA??” or ” DADA??” non-stop with the frequent “Bussssssssh” every now and then when he sees a Cy-ride or a school bus. Evan also likes to tell me “Oh mom, stop! You are driving me around!” I think he means “driving him crazy” but its too funny to correct him. His new obsession is Batman and I am frequently reminded that if I want him to do anything I must address him as “Batman”. Sometimes he pulls a fast one on me and switches to Iron Man so I have to bring my A-game if I want him to cooperate with me! Speaking of which he is going as Batman for Halloween with Jacob being Spiderman and Braden going as Superman. I think we are going to the Night Owl trick or treating at the DSM zoo with the Hopp’s because then we will have a whole superhero squad with Caleb as Wolverine and Grady-bug as Captain America! Watch out DSM the crime fighters are comin’ to town!

Evan also just finished his 2nd time around being a ring bearer. He was SO excited and couldn’t stop telling everyone and anyone what he was going to be at Uncle Seann and Aunt Wendy’s wedding. He did awesome going down the aisle. Now, once he got up to the front, that was a different story. Thankfully Aunt Wendy was so wrapped up in the ceremony that she didn’t hear Evan yell “Where are my fruit snacks mom? I WANT FRUIT SNACKS!!!” and then when I grabbed his hand and squeezed to let him know he was being rude he responded with a “OW! YOU’RE MEAN!!” during the scripture reading. Thankfully, Gma Byersdorfer got him and took him out. Too bad I found out later he swung at her…but luckily gma is more forgiving than mommy and daddy. To be honest he was due for a nap and had hit a wall by then so he sort of had an excuse but he knows better…turd! Good thing his Aunt Wendy and Uncle Seann love him anyway!

Jacob is growing like a weed and is almost as tall as Evan. They are even wearing the same sized clothes so I have to do laundry more frequently. He’s still obsessed with balls and now tries to make any object into a bat or golf club. He likes to torment Evan, especially when he is in timeout. If Evan is in timeout, Jacob will walk over and lay on top of him or stand directly in front of him and not get out of his face. <sigh> it starts so young. I also have the privilege of breaking up fights where they think they have to occupy the same tiny space in a chair so they will hit/push/kick/any means necessary to win over the other one. I finally just let them duke it out because I think they like it more when I tear them apart so they can come running back to irritate the other one. He’s talking a bit more, on his terms, otherwise he will just grunt and point at things. He did, however, say “BRADEN” clear as a bell this morning so that was awesome. He is surprisingly more gentle with Braden these days. Probably because Evan is a good role model for that at least. He likes to “sneak” up on Braden and yell “Booooooooo” and watch Braden laugh. It was so cute the other day. He crawled over to him, yelled BOO! and then walked away. Once he turned around, Braden signed “More. Play” and started clapping. Its so sweet to see them playing together. I even caught them holding hands the other day!

Jacob also likes to be our little helper. He likes to feed Bailey, he gives Evan his vitamins every morning, helps throw dirty laundry downstairs, and also likes to clean the Wii motes by giving them a quick dip in the toilet. He surprisingly understands everything we ask of him too. I am trying to work on potty training but not very consistently. He is getting close though. The last few times he’s gone #2 he has come to us and said “poo-pa” and smacked himself in the diaper. By the time I get him to the bathroom he’s either already gone, or in the case of last week, he tries and then when I go to get him a diaper, he poops on the floor. Oh well that’s what memories are made of right?

So all in all its been a pretty busy month. On Friday we take Braden to Iowa City for a CT scan and complete work up of his spine. We are hoping to get a clearer picture of what we are up against for his scoliosis and cervical spine instabilities and will be discussing if we are going to try a C-collar on B. We will also, hopefully, be able to see once and for all if his hips are in his sockets so keep your fingers crossed for good news!

Now for what you’ve all been waiting for…..PICTURES!

The boys got to go over to my coworker Marsha’s house and her husband was nice enough to let the boys drive their tractors. They had a blast. They were so wore out that at one point both boys went comatose during the 4-wheeler ride and almost fell asleep!


My goddaughter came and stayed with us for a week this summer and the boys loved having her. I might even hire her to be our nurse. She's 13 and hopped right in, suctioned Braden when he needed it and even changed his trache!  We loved her enthusiasm with him and the boys loved her!


We also took the whole fam to the ISU fan fest and got our picture taken with Cy. Jacob is obsessed (to put it mildly) with Cy. Evan also got his face painted to be “Spider-Cy” he thought he was hot stuff!


We had a family reunion for my mom’s side of the family and the boys LOVED playing with all their cousins. I have 22 cousins on my mom’s side and 3/4 of them have 1+ children so you can imagine how much fun they had!


Random shots of the boys and baby Kaylee’s visit


Braden’s “291st day home!” party


And last but not least, the wedding of the century…Uncle Seann and Aunt Wendy’s wedding!!!


BIG CONGRATS and thanks to Uncle Seann and Aunt Wendy for letting us be a part of their big day! It was an amazing day with great friends and family. Big thanks to our nurse Shelly for pulling a double to stay with Braden during the big day, Theresa and Lance  for staying with me for the re-do of my hair and tolerated my nervous break down, Aunt Shelly for taking care of Jacob during the wedding, Gma and Gpa Byersdorfer for taking care of Evan during his meltdown and at the reception, and to Uncle Beanie and Aunt Ann for taking care of Jacob at home while we partied it up at the reception. This weekend couldn’t have been pulled off without all of you helping us!


My favorite picture of these two :)