Monday, May 23, 2011

All by myseeeeeeeeeeeelf……..

Well its official. Adam is off to Ft. Collins, CO for the week for work and I’m home with the 3 holy terrors…OK that’s not fair to Braden and Jacob since Evan seems to be the trouble maker these days. Sorry to go off on a tangent but what the H happens to kids when they turn 3???? I really think someone has possessed Evan and turned him into a whiney, mouthy, screaming, temper tantrum throwing monster. I constantly find myself praying for patience or for Evan to turn a corner and be back to his normal sweet self. I don’t know where I went wrong. Either that or he's losing his hearing because he will only stop if I yell…I’ve tried the staying calm and asking nicely but I can only ask him to do something 3 times nicely before I resort to raising my voice. I'm stuck. I can’t allow him to think he can act this way but I don’t like yelling at him either <<sigh>> any suggestions are welcome. I know everyone says the 1, 2, 3 Magic book is great but I need it on CD cause I definitely don’t have time to read anything in between begging Evan to quit yelling, jumping on furniture, or trying to smother his brother with the diaper wipe package. PLEASE tell me they outgrow this stage!!!!!!!

Anyway enough feeling sorry for myself! I thought I would recap Braden’s hospital stay. I was really hesitant to go back and didn’t think it would bring back all the memories of him being in the NICU but it did. Adam even thought so too. The smell of the hospital brought all those memories flooding back and even though Adam had been waiting for this overnight to get the ball rolling, I couldn’t wait to get home. In my mind I started having a small panic attack and thought about kidnapping him and getting the heck out of dodge. It was an all too similar feeling of when he spent the first 10 months of his life in the hospital. Braden however must have felt like he was back in familiar territory because he was having the time of his life. He really loved his cushy bed and was flopping his butt up and down bouncing all over his crib. He made friends instantly with every nurse and doctor up there.

His room was awesome! Definitely like a small hotel room…so 3 times the size of his NICU room. He had a DVD player, TV, CD player, fridge, and his own bathroom with tub and toilet.

IMG_1126  IMG_1122

He had a great view from his room too. There was the skyline of Des Moines and a beautiful garden area between the wings of the hospital.

IMG_1124   IMG_1125

Adam had training in DSM all day so I hung out at Blank with B. They had him scheduled for his bronchoscopy at 2 so I as able to feed him around 8 and then they came in at 12 to start trying for an IV. I had warned them in advance that Braden has craptastic veins and he proved me true to my word. 3 different nurses came in “looking” for good veins and were unable to find any. They attempted 1 in each foot, 1 in his arm, and 2 behind his ear and the blew all of them. I felt horrible for Braden. He was so hot and sweaty and I think was more scared of the fact that they were holding him down than he was worried about being poked. Finally, after failed attempts by the doc, 2 nurses, and a flight nurse they gave up and gave him some Versed in his G-tube.  The pulmonologist resident was going to do the scope until she found out he was getting Versed so she said she wasn’t going to do it unless he was sedated so the pulmonologist did it.

The bronchoscopy looked good and his doctor thought that he just had a spot of malaysia just below the end of the trache and when his trache collapsed it didn’t collapse completely so he said that was promising. He was going to talk to our ENT to see if we could get a custom trache made that would be a tiny bit longer to hopefully so past that floppier part and help stint his trachea open. After that they gave him a break and let him eat. He quickly fell asleep after that.

Adam and I decided that while he was out we would try and go out to eat. We had a great time but when we came back we found out that Braden woke up shortly after we left an freaked out. The nurse thought the mixture of coming out of the Versed and waking up somewhere strange and not knowing where we were probably freaked him out. She said he cried pretty hard for about 15 minutes and then she rocked him back to sleep and finally had to put him back in bed cause “his head got too heavy to hold” and then he woke up shortly before we got back and didn’t “freak out as bad the second time.” Broke my heart a little bit poor guy :(


Daddy stayed with Braden that night and gave him a bath before they set him up with the sleep study. They had a little bit of a male bonding moment :)


I headed back home to spend the night at home and Adam said they came in after 8 to get him set up with all the wires for the sleep study. The plan, as we understood it, was to get him hooked up and then start SLOWLY weaning him down on his settings to see  how he tolerated the changes since he “rides” the vent at night and lets the vent do all the work. Turns out they came in and immediately switched him to CPAP and took away his breath rate (which is normally 25 bpm). I'm not sure what they expected to happen. Thank god I wasn’t there because when Adam told me this in the am I was furious that he was put through that! Adam said he immediately told the RTs to take him off CPAP as he was working way too hard and put him back on his original vent settings and if they wanted to try and wean him to do it slowly. They obliged by coming in and turning him down every hour. Despite the fact that he was struggling they continued to turn him down as Adam argued all the while the RTs said “he’s SAT-ing great” despite the fact that he was breathing twice as fast, retracting, and being jerked awake because the vent wasn’t triggering and giving him a breath because it turns out, the RTs made the vent LESS sensitive instead of more. ARGH!!!!! Adam also asked if he could do CPT to break up the gunk in his chest and the RT said No and then attempted to suction him, which caused him to wake up and freak out because he was no longer getting the pressure support he was accustomed to, caused his trachea to collapse and spell needing to be bagged. FINALLY after that the nurse looked at the RT and said “ENOUGH! You aren’t doing anymore.” Adam told them to end the study and put him back on his original vent settings and the RT has the nerve to say “He was doing really great we should try CPAP again.” WHAT?!?!?!?! Listen-don’t try and make a name for yourself with my child OK? He’s not some kid who comes in with RSV who can be weaned off a vent in a day. He’s been on a vent since birth…don’t you think we’ve tried this a few times before now? Come on! The nurse just looked at the RT and said “you are not doing any more to him on my shift!” Thank god for her and Adam…I was a wreck when he recapped this for me so I can’t imagine what I would have done had I been there! Poor Adam didn’t get any sleep either and had to go back to training all day that day.

Adam and I both made sure that the resident and doc didn’t not make that drastic of changes to his settings. They did go much slower and dropped some of his settings to see how he would tolerate them. I can’t recap them to you as Adam is the expert in this area so I will have to wait till he gets back with those. I think it went from a pressure support of 25 to 20. Same with the breath rate, and a PEEP of 5 from 10. We will see how he handles these throughout the week.

Later that morning the RT came back to do his CPT and suction him. I think from now on we will just say that if we are there we will take care of all his cares. I sat there and literally watched her CPT him on FULL BLAST and then ask “why are you crying buddy?” I was like…uh turn it down notch you are going to vibrate him right out of his crib, THEN she suctioned him by threading the ENTIRE suction catheter down his trache! I was like “WHOA WHOA WHOA!!! You only go to the yellow line.” All the while Braden is coughing, gagging, and crying. I wanted to ask her “what are you trying to do? Suction his rectum?” Dear god why you would thread that thing that far is beyond me. I didn’t let her touch him the rest of the morning….geesh I have to change the subject soon. I’m getting all flustered all over again! >:< It certainly made us appreciate our RTs from the NICU…whom I angrily texted to right after that (sorry girls I needed to vent to someone who would understand)

After that whole debacle we were scheduled to do his swallow study. I wasn’t too anxious for this considering how the night and morning went. Braden of course had had enough by this point and was in no mood to have food in his mouth but he pulled through. Theyput him in a tumble form chair and had my squirt some pediasure with barium in his mouth and we anxiously watched it go from his mouth right into his throat!!!! AWESOME!!!! The OT was impressed and said even though he was crying and throwing a fit he managed to protect his airway at all times and nothing entered his lungs. Everything he swallowed went into his stomach. She said some did go up his nose but surprisingly less than she expected for a kid with a cleft in his soft palate so she said we could start trying some feeds (more like tastes) by mouth as he tolerates. She suggested working hard on desensitizing his mouth/face area before trying to put food in his mouth as we want as positive experience for him as possible. We want him to WANT to eat and NOT associate food with negative feelings. She also suggested we puree out own food instead of using baby food because “real” food will have more taste. She also said to play around with spices (cinnamon, cumin, chili powder, hot sauce, pickle juice, lime, lemon) to give his taste buds a “HEY! That was interesting…I think I might want more” attitude. She said kids who have oral aversions generally need food/tastes with more of a “punch” to get kicked in the right direction. I tried this yesterday with Ranch. I put a little on his bottom lip and DIED laughing watching him frantically lick his face for more. SO maybe we are headed in the right direction there. I know his day nurses have been working really hard with getting him to let them touch his lips/mouth so hopefully with more repetition he might allow things like a spoon/syringe in his mouth. She had a ton of great suggestions and was super nice to work with so that made the trip worthwhile.

She also hooked us up with an in-line passy muir valve (I’m sure I spelled that wrong) This is a one way valve that allows air from the vent in and forces Braden to push/exhale the air up through his vocal chords and out his mouth allowing him to speak. We will have to keep practicing with him on this as he isn’t quite used to the pressure change and putting it inline results in him coughing and popping it off his vent. She said this isn’t uncommon and gets better with time. I CAN’T wait to hear the full range of his voice! Of course we won’t push it until he’s ready!

So…that was our trip in a nutshell. I think the boys were excited to see us and Braden was excited to be back with his brothers. BIG thanks again to my mom for coming down to watch them. Anyway I know I’m ending this abruptly but I should head to bed. Big prayers for all the people in Joplin, MO and anyone with friends and families affected by that tornado.



Braden petting Squeak and loving it. I can’t believe she let him touch her. Shows you how desperate for attention she is. Probably helps he’s the ONE child who doesn’t chase and screech at her maniacally!


Snuggling his dinosaur from his favorite nurse Katie from Dr. Flores office. She came to visit twice while we were there.


IMG_1139  IMG_1143

Evan found out it pays to have a little brother around. Jacob pushes the fire truck and Evan sits back and enjoys :)


Thursday, May 19, 2011

Hold on to your butts, its gonna be a long one…

A lot has been going on since the MOD walk…picture wise that is! Thankfully the great weather held out on Mother’s day and I was able to spend an awesome day outside with all 3 of my boys. Daddy made us all a big breakfast, Evan and Daddy spent the majority of the morning outside while Jacob and Braden napped, and then we all went to Ada Hayden, the man made lake/walk area in Ames, and went for a walk/bike ride. Evan wanted to ride his Thomas bike, Adam “hiked” with Jacob on his back while walking Bailey, and I pushed Braden. It was pretty windy so we had B covered up but after awhile we slowly peeled back the “blanket bubble” to get him used to the wind. By the end of the walk, he was completely uncovered and in awe of everything around him. IMG_0820

Jacob loves being on daddy’s back so he rarely made a   peep except for when he was thirsty. He also carried Bailey’s leash most of the way on the walk. Evan rode his bike the entire way around Ada Hayden which is probably about 2.5 miles. Not bad considering the head wind he had. He did walk the bike the last 1/4 mile so for a 3 year old that’s not bad!


IMG_0829      IMG_0835

We really had a fantastic day. When we got home we all got popsicles and took naps…well Jacob and Braden did anyway. Evan of course fell asleep 2 seconds into the car ride and then promptly woke up 5 minutes later when we arrived at home surprisingly well rested. His overtiredness showed through later that night though when he threw a temper tantrum because he wanted to pee in the downstairs bathroom instead of the upstairs one. We had the pleasure of watching him do the “potty dance” naked in front of the upstairs toilet while screaming “I hate this potty I NEED to go downstairs!” Never again will naptime be missed after that lovely display of dramatics!

IMG_0853      IMG_0856

The boys also enjoyed playing with their water table last Tuesday during our 100 degree May day weather! I was hesitant to bring B out but he did great. We set up shop under our big tree in the back yard near the other boys and he had a great time

IMG_0867   IMG_0874

IMG_0897  IMG_0905 IMG_0916

Sorry folks…you are about to get picture overload…I put my Valentines Day present to good use these days :)

IMG_0932      IMG_0946IMG_0962

We may have a future ball player on our hands. Adams friend Bruce, from work, gave Evan his son’s first ball glove and Evan LOVES playing baseball. He’s pretty good at hitting the ball too. He got a T-ball set from our friend Sarah and her daughter Aubrie and he would rather we pitch it to him and man can he hit it far. Don’t get carried away though…we aren’t one of THOSE parents…yet! He’s just having fun. But, I did catch Adam telling Evan to “square up” and by god he did :) 

If he needs improvement on anything it would be to block his face from the ball. He hasn’t quite mastered moving his hand to the ball, instead using his face to stop the ball half the time. He will get it though. He’s got a heck of an arm on him too! Good thing it’s the one sport Adam and I both love to play!


IMG_1030  IMG_1014  IMG_1021

The weather last weekend was pretty crappy so we hung inside the house and played. Above is the boys and daddy watching Tangled…or “Tangled Bell” as Evan is confusing Tangled with Tinkerbell. I think we watched it 5 times between Friday and Saturday. Evan also likes to read his brothers books (Braden is a more attentive audience than Jacob-mainly cause he can’t run away) “Brown Bear Brown Bear” is a favorite for everyone! Braden is getting to spend some time on his tummy these days and doesn’t mind it to bad if you help hold his head up. He has flopped onto his belly a couple times on his own and tends to get pretty mad but he also face plants and doesn’t know how to get back over so that is part of the reason he gets so crabby. Jacob is working really hard to walk. He can walk along furniture now, pulls himself up and lets go and “practices” standing without help, and wants desperately to be able to climb onto the couch. He won’t take any steps on his own yet. I have tried and he won’t even reach for me, he just slowly crumbles to the ground and then yells at me.

IMG_1015     IMG_1025

We had all 3 boys in the bathtub this week which was interesting. Jacob is really rough with Braden but he doesn’t seem to mind. The more Jacob smacks him the harder he laughs. We also had to implement a new rule at the Byersdorfer’s. Who knew having  3 boys meant laying down the law at bath time. I’m sure my neighbors loved hearing me tell the boys “if you are going to touch a wiener, at least touch your own!” Geesh! Its tough being the only female in the house most days!  The pic on the bottom right is right after Jacob smacked Braden square in the face! At least B’s a good sport about it.

IMG_1036       IMG_1039

Bottom Left – Jacob sticking his tongue out after daddy yelled at him for smacking Braden

Bottom right – clearly didn’t learn his lesson as he’s going back to do it again!

IMG_1040  IMG_1041


I call this photo

“Hand Check”

Noticed the horrified look on Braden and Jacob’s face…as Evan proudly sports a smile ;)





Every year my work puts on a school for international visitors who want to learn more about Veterinary Biologics testing and regulations and every year they have a kick off reception at Reiman Garden’s in Ames with food, drinks, and admission to the garden. I thought this would be a great time to take the WHOLE family to enjoy the butterfly garden and the “Big Bug” exhibit and it was FREE so you can’t beat that. The boys had a great time and LOVED seeing the butterflies and “BIG BIG Bugs” as Evan called them. Evan laughed especially hard at my “hitchhiker” in the butterfly garden. Here I was walking along and Evan yelled “Hey Mom! Its on yours butt!” must have been a nice cushy landing cause that butterfly didn’t budge an inch the whole time we were in there.

 IMG_1062  IMG_1083  IMG_1079

IMG_1069      IMG_1086

Bottom left – the “Yucky Squito” as Evan calls it

Bottom Right – did you know its illegal to kill a Praying Mantis? Learn something new everyday!

IMG_1092   IMG_1096

IMG_1099  IMG_1103

IMG_1109  IMG_1116

So… that brings us to today. My mom is staying with the boys today and tomorrow while we admit Braden to Blank Children’s hospital to do a bronchoscope, sleep study, swallow study, and hopefully do some vent changes to start the weaning process. Don’t get too excited, it will be a S-L-O-W process which Braden will hopefully be willing and ready to try. Its kind of weird being back in the hospital. We miss our girls from Mercy bad but can’t really complain about the room here at Blank. Its twice the size of his NICU room and we have a TV, DVD player, and our own bathroom (sorry girls we love you but this is the Taj Mahal of hospital rooms! ) Adam and I of course are rookies to overnight stays. We came in this morning lugging every piece of equipment he owned not knowing what he needed here and turns out we just needed him and the vent. Piece of cake for next time (hopefully on our terms not due to illness!)

BIG thanks to my mom for coming down this week and last to watch the boys when we didn’t have daycare and for when B is in the hospital. Here’s to hoping -  hoping for good things from his sleep study/bronch, he tolerates vent changes,  he doesn’t knock out the OT therapist when she tries to do the swallow study and tries to get in his mouth, and HOPING they can find a vein for his IV for sedation on the 1st try! :/

BIG prayers to Miss Grace, our CD friend who is 6 months older than Braden. She goes in today for a bronch and for her cleft palate repair surgery today. Hoping everything goes smoothly for her and for quick healing! And BIG CONGRATS to our friends Kristin and Tim on the birth of their baby boy Alex. We are so glad to hear everything went well and that everyone is healthy and happy…helps that he is super adorable too :)

Saturday, May 7, 2011

Marching for babies!

So the day has finally arrived! Today we walked for the March of Dimes with about 20 of our friends and family and it was awesome! Nothing like great friends, great family, and a beautiful 80 degree day to be outside! Our day started with a wake up call at 5:30 and had to be out the door by 730 to pick up our friend Ami from work. Of course in trying to get everything ready, team shirts, sippy cups, diapers, vent, snacks I forgot 2 of the most important things….a spare trache and the ambu bag. Needless to say I said a few prayers on the way to DSM hoping for a smooth sailing day with no trache occlusions! That wont happen again EVER! Braden was not a fan of the car ride down…is he ever? We also were of course 10 minutes late meeting our team…also should not be surprising to those who know us but after that minor snafu the rest of the day was awesome.


Our shirts turned out awesome and were a great, bright color to pick out our group especially since Adam, Evan, Braden and I brought up the rear (don’t worry we still won March of Dimes ;) ) Our shirts said “Braden and Jacob” with their birthdate in the swoosh and “291” for the number of days Braden spent in the NICU. Our team also raised $2000 so kudos to our AWESOME team! Thank you for coming out to support us. It meant a lot to see you all there!

The other great thing about today was we ran into our NICU family and was able to show off the B-man to his girls. It has been FAR too long since we have seen them and it was great catching up! Braden of course had a shirt that matched Jacob’s but he was a giant sweat ball so he did the MOD walk naked…yes that’s how he rolls ladies! We also ran into a ton of our NICU family friends which was a great reminder of the miracles performed every day by the wonderful doctors and nurses at Mercy. The Kamps’ triplets (25 weekers weighing 1 1/2 lbs at birth) looked amazing and so adorable in their expanded stroller and Birk and Addy (also 25 weekers) looked pretty suave in their shades!  Birk is our trache buddy and he was rocking that like it was no bodies business! It was also a reminder to be thankful for the children we were blessed with as many families were walking in memory of their little angels who have spent more time in heaven than they did on earth with their parents. If you ever take your blessings for granted, come walk with the March of Dimes and and walk by the “Avenue of Angels”  or read some of the heartbreaking t-shirts in memory of their lost children. So, if you have little ones at home, hug them tight and say a little prayer of thanks that you are blessed to be sharing this moment with them.

Jacob rocked his stroller and pom poms and had a great time walking with the “speedier” folks in our group. He hung out with gma and gpa Boesen, Aunt Nancy, Aunt Sara, Erin, my cousins Misty and Liz, Aunt Shelly, and Phil. I hear he was humming along the route, pointing at things, and chasing down the Drake Bull Dog mascot. Evan couldn’t decide if he was going to walk, run, or ride in a stroller and was kind of an emotional basket case but his cousin Michael helped pull him out of his funk. They were having a great time fighting over who was “winning” the race until they decided to take off running into the crowd (Michael probably wouldn’t have but Evan is not the best role model ;) ). You want to see someone in shape?? You should have seen Adam’s cousins wife RUN after the two boys 7.5 months pregnant! Sarah was a rock star and to be honest made me look pretty bad :) She can run faster than I can and I’m 15 months POST babies while she’s still cooking one…not to mention she gave Michael (who probably weighs 20 lbs more than Evan) a piggy back ride. She “wins” MOD for sure ;)

IMG_0796  IMG_0797  IMG_0807


The men of the hour (or 3)…the reason we walk


See they do like each other sometimes ;)

IMG_0809  225207_528635194661_99000024_30858667_2572084_n

Some of our favorite nurses-Laura and Bri

bi jake and ebby untitled

Other big news from the Byersdorfer front, Braden has been signing more and both boys are into imitating us. Their favorite is to blink or as I call it “double wink” at us. All I can describe it as is I Dream of Genie without the nose wrinkle. Its pretty funny! They are both getting really good at blowing kisses and waving hi and bye to people. Braden’s is a little backwards as he waves to himself and just puts his thumb in front of his mouth and moves it back and forth to “blow kisses.” I pretty sure Jacob even said “daddy” they other day and will still yell “Da-da” when I repeatedly say “ma-ma” to him. He’s a turd. We are also at a loss as to how to discipline him. “NO!” doesn’t work, nor does hand/butt swats. Any combination of these usually results in hysterical laughing by the said culprit. He is also a fan of anything water! Full glasses abandoned on end  tables, dog bowls, toilets, you name it. He even recruited Everett, the little boy at daycare, to join him in “toilet swimming”. See, again, my kids are NOT good role models! Seann and Wendy have been working hard with Jacob to try to get him to stand on his own let alone walk. If you are wondering, why them and not you I say…Seann taught Evan how to walk so I think its only fair Jacob get the same opportunity ;)


  Other big changes at our house is that 3-4 days a week we have 3-11pm nursing vs overnight nursing. This has allowed us to do more as a family at night. Evan had been BEGGING to go to his daddy’s softball game and we finally went on Wednesday and brought his buddy from daycare and that’s all the boys talk about. I’ve also been able to pick up a few more hours of work which should help since gas prices are now 4 bucks/gallon! The down side is I sort of feel guilty. Now that I don’t come home at 3pm 1/2 the week I am missing out on Braden and my alone time but he is getting taken care of well by our evening nurse. She has taken him on two walks this week and they play nonstop so he is enjoying himself. I know every parent of more than one child struggles with the guilt of spreading their time between kids. I’m trying to cope with the change and hope Braden doesn’t feel like I abandoned him. Oh who am I kidding…he probably doesn’t even know I’m gone!

Well I think that is it for now…I’m off to relax a bit and catch up on my smut reality show TV I’ve DVR’d before Big Jake wakes up. Hope you all enjoyed this 80 degree weather like we did!