Appointments and more….

This week was kicked off with a few of B’s appointments. Yesterday we met with Dr. Flores at Blank Children’s hospital Pulmonology clinic. He was very impressed with how well Braden has been doing since home and answered a lot of Adam’s questions about weaning, Passy muir valve traches (allow air past the trache and up through vocal chords), and sprinting (going off the vent for timed periods).  Dr. Flores was pleased with the fact that Braden can sprint up to 5 minutes or so off the vent. Adam even confessed that on our trip back to Fairbank for Adam’s family Christmas we hooked him up to the transport vent and didn’t realize that his external PEEP was set to 0 when it should be 10. Dr. Flores said that even though it was an unintentional accident, its good information for them and gives him some confidence in tweaking his vent settings and try to work towards weaning. He ordered some artificial noses for his trache do when we try sprinting him as well. They also scheduled his overnight stay for April 13th-14th. The plan is to admit him early that morning to Blank, do a swallow study with Speech Therapy, perform bronchoscope in the afternoon, do the sleep study that night, and then tweak his settings a bit on the vent and monitor him until the next day. Dr. Flores gave us a tour of the PICU and it looked like a scene straight out of House; with the large rooms with glass walls and sliding glass doors. The nice thing about the PICU (if there is one) is that the rooms appear pretty large so that’s a bonus. This is all dependent on the availability of a bed due to RSV/flu season.

Today was his appointment with GI to get his new, larger G-tube. We loaded him up with Tylenol beforehand and got down to DSM. The procedure is done right in the room but is a bit invasive since he has a non-balloon button so it hurts a bit when the old one gets pulled out. I made sure we had an ambu-bag, spare trache, and O2 on the bed next to him in case he got so made he threw himself into a fit. The doc warned us he was gonna be ticked off so I held his arms and tried to calm him down as best I could. It was a pretty loud POP when the G-tube was pulled from his stomach and he was REALLY mad but I was able to calm him down after a minute or 2. Then when the new one got put back in he was REALLY upset. It took a bit to calm him down but he never dropped his SATs or had a spell so he’s a rock star. I dressed him up in his Superman shirt from Nurse Kate to give him some extra confidence going in to the appointment. Daddy, however, didn’t fare so well with the switch. I told him not to watch but the loud POP got to him and then he said a bunch of blood/water/stomach contents (which was just water and Tylenol) came gushing out and his subconscious took over and he felt the pass out/get sick urge and had to go sit in the other exam room next door. He was a lovely shade of yellow/gray and almost matched the paint on the walls. B and I gave him a pretty hard time when he came back and Dr. Noble made him sit in a chair the rest of the appointment…poor daddy he can’t catch a break. He tries to man-up and get down and dirty but his mind takes over and gets the best of him. Maybe next time…even though daddy says he hopes B is eating by mouth before the next time his G-tube gets replaced :)

Other Braden stats-he weighs 21.6 lbs and is 25 1/4 inches (HE GREW!!!). He is also cutting all 4 molars at once :( Poor dude! He only has his bottom 2 teeth and now these molars. We may need to look at getting him some baby dentures!

This weekend we are meeting with Pam, one of Braden’s NICU nurses who has a photography business on the side, (she did all the pics for our Christmas cards) and the boys are getting their 1 year pics and Evan is getting his 3 yr pics. It should be fun…well lets say interesting . I thought the Christmas pic adventure was a disaster but she ended up getting amazing pictures so I'm optimistically excited :) We will have the fabulous Nurse Sarah with us to help so that will be great too! She can see how crazy it is to fit the whole fam in the van and travel Byersdorfer style!

on April 11th Braden has an appointment in Iowa City to meet with the craniofacial docs to discuss when we will fix his cleft pallet in his soft pallet. Then they are going to put him to sleep and do his hearing test. I may ask them if they can remove the small cyst on the back of his head he has had since he was about 6 months old.  It will be a pretty full appointment and I hope we can get some answers to how well he can hear.

Other big news for April…EVAN TURNS 3!!!!! He is so excited too for his “Sticky” Spiderman birthday. Our friends are letting us borrow their bouncy house and Evan picked out a pinata for his party and can’t wait to “get some candy!!!” I can’t believe he is going to be 3 that’s mind boggling to me. He has turned into such a funny, witty, adventurous kid who is an AMAZING big brother and I couldn’t ask for a better kid!

Jacob still isn’t walking but will shuffle along the couch and can now climb the entire flight of stairs all the while laughing hysterically. Unfortunately, he does NOT sleep through the night again. He wakes up every 2 hours and will only sleep when he is being held…not sure whats going on but I am open to suggestions!!!! He loves climbing all over Bailey and blowing kisses to just about everybody! He has this new crazy “cheese” face he does now when the orange light comes on my camera before the flash that are just hysterical! Also, after bath time his hair is SUPER curly so I like to spike it up and show off his sweet Jersey Shore-esque hair :) Hes a junior Pauly D in the making!

Hope everyone is having a great week…keep your fingers crossed that pictures goes well!

Ace and Gary on their fire truck

Don’t feed the bears Evan!!!

My sweet little thumb sucker

Playing with his toys

 

    

     

 

Big boy riding in a big boy car seat :)

Doppler 3000 aint got nothin’ on Jacob!

So, as I sat for about 2 hours today hoping the tornados in southern Iowa missed my friends and didn’t swing up towards Ames causing us to gather all B’s equipment and huddle in the basement, Jacob showed off his own radar abilities. I swear that kid knows the exact moment the bathroom door is left open and bee lines it to the potty to try and take a bath in it. Case in point, I was working on Braden during one of his fits after coughing some junk up only to hear Evan screaming “Hurry mom…oh yuck Jacob!” I yelled “what's he doing?” and I get hit back with “HE’S IN THE TOILET!!!!!!” And I yell “GET HIM OUT!” to which Evan responds “EW YUCK NO WAY! He’s all wet!” So sure enough, after I make sure B’s stable, I run into the bathroom (of course my insane worst case scenario mind pictures him face down in the toilet <<shudder>>) and I find Jacob standing up flailing his arms and splashing water like he's in a Neutrogena face wash commercial. UGH so gross! After scrubbing him down TWICE with antibacterial soap and drying him off I felt a little better. Needless to say we have long discussions with Evan on keeping the door closed to the bathroom at ALL times!

Other things Jacobs hones in on….any unattended glass of water and the dog’s water bowl. Last week he dumped Braden’s water used to heat his bottle all over the entertainment center (luckily sparing the Wii and Dish receiver) and then tonight he dumped  the dog’s water bowl which is an ice cream bucket full of water and flooded the entire dinning room. I think the plan will be to have a much smaller dog dish so I don’t need 5 bath towels to clean up…yeesh!

Lets see what else has been happening around here. Last weekend Jacob and I made a trek to Omaha to my friend Kristin’s baby shower. It was awesome to see her and to have survived the 2.45 hour trek by myself with Jacob. It was not uneventful by any means. He did sleep for about an hour on the way down but then about 20 minutes outside of Council Bluffs he wailed uncontrollably and I was doing the 1 hand on the wheel, 1 hand wagging a cheese stick at him to get him to take it. When the cheese stick fell on the floor I tried to give him a bottle which he in turn threw back at me…it apparently wasn’t the right temp, so then I tried to give him his snack trap and he looked at me like I had just fallen off the banana boat. I’m thinking he thought I gave him a broken Sippy cup because he kept dumping it upside down and smacking himself in the face with it. Silly kid…luckily though we both survived. The car ride back was a little rough, poor baby had to cry himself to sleep but he was a trooper!

New goings on with Braden these days? He cracks himself up! We finally got the new Flextend trache in the mail which allows the trache and vent tubing to be farther away from his face and he is loving it. Twice now he’s rolled over onto his belly and even this weekend he lifted his head and rolled from belly to back. He’s a rock star. He also has gotten really good at clapping and making noise with his hands. He starts laughing hysterically after he claps and makes noise. He’s quite the little entertainer. He’s also tolerating sitting up in his tumble form chair more now that Early Access dropped off a bigger one. He also loves to grabs his legs and try to get his feet and is seriously ticklish in his meaty thigh area ;) He put on a great show for Sarah this weekend and even showed off his piano playing skills for Gma and Gpa Byersdorfer. He’s also really begun to hate having CPT (chest physical therapy) done now. I even tried to do it on his buddy Ernie first to show him it was OK and he cried real tears for Ernie…he can play me like a fiddle that one! He still loves his brothers and loves to wave to them in the morning when he wakes up. I put Jacob in his crib the other day and put the rails up to let them play while I picked up around Braden’s equipment and I happened to look up to see Jacob STANDING on Braden’s tummy. I yelled for him to get off his brother and then saw Braden laughing hysterically. I’m glad I have boys who are tough!

       

Evan is constantly cracking us up and we are seeing little glimpses of a sassy 3 year old emerging behind his sweet façade. For instance, I say “Evan, please go get your shoes on” and I get “Why don’t YOU put my shoes on?” or “My daddy said I could do whatever I want” Highly unlikely bub! Seann and Wendy’s niece Callie stopped over while Seann got his haircut Sunday and Callie ran to his room while Evan was taking a bath and Evan asked “Where’d Callie go?” and I said “she went to your room until you are out of the bath” and he responded with “Well, I think I love her.” HA! I about died when he said that. We might have to have a talk about girlfriends because he also tells me how much he “sure does love his Au-bee” which is our good friend Sarah’s daughter. He’s gonna be a heartbreaker what can I say :)

                                 

Other than that we are anxiously awaiting warmer weather. These teaser 60 degree days aren’t going to cut it especially since this weekend forecasts snow BLEH! Oh, yeah, last week we also trekked to the park as a family and had a GREAT time! It started off a little bumpy with B not getting a nap that day and not having it in his stroller. I being the nice mom I am just threw his blankie over his face and started moving. Luckily our sidewalks stink around the house and are good and bumpy and it put him right to sleep. Unfortunately for him he slept the whole time but Evan and Jacob had a blast. Evan never fails to make friends where ever we go and met some a little boy there who was playing with an airplane. Of course Evan yells to me “Hey mom whats this kids name?” Gee I don’t know Evan why don’t you ask him haha! I think the best part other than going out as a complete family of 5 was watching Evan pull Jacob in his wagon. So sweet…melted my heart. Enjoys the pics and try to stay warm this weeK!

 

              

       

                           

          

March of Dimes shirt…want one??

Well I went and spoke with A&R Marketing here in Ames and I think I have picked a design I like. I’m still open to suggestions though. I decided on baseball Henley's that are white with gold sleeves and there will be Cardinal Red writing. Unfortunately they can’t make the shirts smaller than Youth Small so there wont be toddler jerseys :(  I am making specific shirts for the boys so if you want something like that we can do it too. I think the shirts will be around $15/ea and I need to order a minimum of 24 (so far by my count from who’ve gotten back to me we have 15 so far!). If you want to walk with us and not get a shirt that is A.O.K too!

If you want one send me an email at boesen628@hotmail.com or shoot me a message on Facebook with how many and the sizes. I need to place the order before the 16th of April for them to be done on time.

The 11 is for 2011 - its all I could come up with at the time…got a better idea I am all ears and open to suggestions :)

So now that that is out of the way on to some other things going on here. Braden had 3 doctor’s appointments today in DSM and did awesome. AND…he rode all the way there and back…IN JACOBS CAR SEAT!!!!! This was the first time he has sat upright in a regular car seat and he did amazing!  Dr. Young (ENT) wrote him a script for a flextend trache which will help get his vent off his face but didn’t up the size because he said right now hes probably in between what he has and the next bigger size. He wasn’t too concerned since he is able to maintain his SATs just fine with the Peds 3.5 Bivona,

His next apt was at Dr. Noble’s (GI) where he ordered the next size G-tube. We have to order the G-tube from Iowa Home Health and then make another apt to come back. He suggested giving B Tylenol before coming as well to help with the soreness after the replacement is placed in. He also weighed in at a WHOPPING 20.2 lbs!

Next was his Apt with Dr. Alsayouf (Neuro) and everything went well there as well. If he goes seizure free till 2 years past his last seizure (Nov. 2012) then we can look at weaning him down on the Keppra. He will also need a 24 hr EEG then as well.

Then…..we trekked over to Mercy and saw all our family over there. It was awesome seeing everyone and B was true to form smiling and putting on a show for everyone. We even got to see 2 of our favorite neonatologists, Dr. Murphy and Dr. B. Everyone was so impressed with how big he was, how happy he looked, and how long his hair was. He got lots of hugs, kisses, and hair rubs from everybody. It was an awesome visit! We sure do miss everyone up there! Unfortunately we didn’t get to see all his girlfriends as they have been “mandatoried” and sent home due to lack of babies to care for in the NICU. Baby making is slow this year I guess. Its weird to see that considering when the boys were born they were overflowing with babes and were in desperate need of extra rooms! (Any of you NICU gals want to come work for us???) Hey I thought I would ask ;)

Here are some pics from this week….Enjoy!

 

          Peek-a-boo!

 

 

 

                         The Boesen Grandsons

Playing Patty-cake with my bro

Bailey is my bestest friend!

Im a big kid now!

  He's always wanting to play in the toilet so we thought we would try…he didn’t go by the way ;)

I turn away for 1 second and he steals two donuts from the bag Evan left on the floor!

We love our puppy!

Evan wanted to “take off our shirt and fight!”

B and his pal Ernie

Visiting our NICU family

We sure do miss our girls!  Snuggling with one of our fav RTs!

Zonked from the ride :)

Bring on spring…

I can’t even being to tell you how excited I am for warmer weather and be done with this virus/illness infested winter! I can’t wait to have the windows open, warm spring breezes with the scent of rain wafting through the house and I can’t wait for the trees to bud! I think one of my favorite things about spring and Iowa is how green everything looks when the trees and bushes bud and the grass begins to grow. I also can’t wait to go on walks with the whole family and take Braden and Jacob to the park for the first time. I think we are all going a little stir crazy locked up inside.

With the season change comes the urge to clean. Our house needs it so badly too. I absolutely cannot wait to clean the inside of our fridge and shampoo the carpet. I think our carpet right now is seriously worse than the floor of the monkey enclosure at the zoo. Jacob throws his food to watch Bailey chase after it, Evan’s Sippy cup leaves tiny droplets of juice everywhere, Braden shoots milk balls out his bolus feeding tube and I swear he thinks he’s in a warzone trying to nail the enemy as we walk by. Its so bad that when I hear it start to bubble now I hit the deck hoping to not be a casualty of his dinner! So, needless to say the carpet needs some serious TLC.

Anyway, the boys seem to finally be on the mend and have now graciously included me to their elusive illness club…thanks for including me guys! I have a wretched sore throat, painful ears, and a head full of junk. Earlier in the week I swore my lungs were waging a silent crusade to drown me in my sleep. Thank god for Robitussin (or in our cheap-o case just “Tussin”) Still hoping B doesn’t come down with it but he's secretions have gotten a bit thicker lately so I think its only a matter of time…WAH-WHON! We are trying to stay on top of it though and hope we can keep it in check. He decided to throw a hissy fit last night and the only thing I can think of is that his trache was twisted and it was causing him pain and I tried calming him down but he started his thrashing about and threw himself into a bronchospasm which he in turn turned purple/black, required a trache change, and some serious bagging to open up his airways. I’m hoping he doesn’t start this as a temper tantrum scheme because that would NOT be good! He came out of it pretty upset and I just rocked him and he fell immediately asleep. Ugh! Not a good way to end our night!

Other than that he is doing great. He started clapping, and likes doing the Homer Simpson spin in his crib. He also has really discovered his legs lately and likes to grab his chubby little thighs and his knees. He also thinks his brothers are about the funniest things on the planet.

Evan is constantly keeping us on our toes with his “Evan-isms” which usually have something to do with him referring to his wiener.  I hear this doesn’t get better as they get older! He also prefaces everything now with “OH MY GOSH…ARE YOU KIDDING ME? SERIOUSLY (Insert someone in the house)” He also refuses to sleep in his room anymore. He tells me “Im scared of my room…I don’t like it” and I ask why and he responds with the ever descriptive “Because”. I think the last three nights I have woken up to Jacob screaming and end up stepping right on Evan’s head because he has snuck into our room to sleep on the floor in the middle of the night. He also has taken over the remote now that we have Nick Jr on DISH network. I can’t tell you how disturbing it is to be dreaming about WOW WOW WUBZY now that I have to watch that EVERY.SINGLE.NIGHT. <<shudder>>

Jacob is struggling with not being able to walk yet. He wants so desperately to be as fast as his big brother but he can only manage to pull himself up. I think hes gonna be our little klepto. He likes to pull himself up on the kiddie table and swipe Evan’s food when hes not looking. The other morning I found Jacob under the table huddle in the corner like a rabid raccoon nibbling on Evan’s chocolate muffin. It was pretty funny. Hes also become  my rock-out buddy. He likes to jam out with me on the way to daycare as I cruise the town of Ames in the Ol’ Chrysler Town and Country pumping my new Eminem CD. I’m one ghetto soccer mom haha.

So anyway that’s our week in a nutshell. Oh before I forget my nephew Phil had to write a short story about someone important in his life and he chose to write about his baby cousin Braden. He wrote that his baby cousin Braden has a disease and needs tubes and a machine to help him breathe and he eats food through his tummy. That was pretty special to hear that he chose Braden as his important person in his life so thanks buddy you made my day :)

P.S. GO CYCLONES! We are winning our 3rd Big 12 game :)

Here are some pics from this week….

B’s 2nd Bio-mom Kate came to visit

(Kate and I made an unofficial agreement that she would get Braden should Adam and I kick the bucket…Im still trying to convince her take the other 2)

2 brothers from another mother (Noah and Jacob)

Noah is having flashbacks of Jacob squashing him while he was in his mama’s belly

Holding daddy’s hand while he naps

I love this picture :)

Judge Braden…watch out Lindsay Lohan he’s not messing around!

Evan wanted to take a bath with the B-man

My big boy

How can you not love that face?

Me and my boys and Miss Bailey