Wednesday, November 16, 2011

One year ago today…(a day early)

was the scariest but happiest day of our lives. One year ago today our dreams of being a complete family of 5 came true. Its hard to put into words what that day meant. Adam and I were extremely excited but also scared that for one, Braden wouldn’t be ready to come home as he had started to act sick and two, that we wouldn’t be as good of caregivers to B that his hospital family was to him. The day before Braden started acting like he was coming down with something so I had not let myself get too excited that November 17 was going to be the day he was coming home. At about 7:15 that morning, Sarah, B’s nurse that day called and immediately my stomach hit the floor…something was obviously wrong. Sarah asked if I was sitting down and I thought “Oh my God what happened” and she asked “Do you think Braden is ready to come home?” and I said something like “well if he is sick no” and she yelled “WELL HE IS!! HES COMING HOME!” I just started laughing and crying and kind of peeing my pants a little bit ;) I ran down and told Adam and said “Lets go get him!”

I remember the drive down and thinking to myself…its going to be SO nice to not have to drive to Des Moines every day (no offense Des Moines). And then when we walked into the hospital and I took a deep breath trying to remember the smell of the place that was our second home for the last 10 months and relishing in the last elevator ride up to the 4th floor NICU, the last long walk to Braden’s room in 4008, the last day I got to goof around and chat with my girls who took such awesome care of him when we split our time between kids all the while trying not to break down bawling.

The first person I saw in Braden’s room was Sarah and we both started crying and she told me that his room had pretty much been like this all morning. All the doctors on call had stopped in and said their good byes. Annalicia, one of his RTs, was rocking B in his room and crying too. His couch was FULL of gifts and cards from everyone on the fourth floor and there wasn’t a dry eye in the place. Poor B was so wore out from all his visitors that they decided to let him crash while they told us that they had something for us. In one of the larger rooms they had set up an entire spread of food and had thrown us a surprise going away party. They had a huge poster that all the nurses/RTs/doctors had signed and we all just hung out and ate food and talked about the past 10 months…oh and they said don’t tell anyone about this (sorry cats out of the bag ;) )I also got suspicious as everyone kept wanting their picture taken with B. Come to find out that they had made us a Shutterfly book for Braden to document all the people that loved him for the 1st 10 months of his life.

It took 3 hospital carts to get everything into the car that day and after many hugs, tears, and goodbyes later, Sarah carried Braden down to the van and gave him one last hug to send us off. To say that it went smoothly would be a lie. Adam and I fumbled around, tried to find all his equipment, it was cold and windy and B was not having it and I was having a minor panic attack and thought we were going to have to re-admit him to the hospital with the fit he was having. Luckily we got our act together and we headed home. That car ride to Ames was the longest, scariest ride of our lives but the second we pulled into our driveway, saw the welcome home sign that Wendy and Seann had put in our yard I knew this was where he needed to be…with us and his brothers.

Its been a crazy, fun, amazing, scary, stressful year but I wouldn’t change it for the world. I can’t thank the staff at Mercy for all they have done for us. Braden is living proof that you work miracles daily and the love you showed our family and how you took us in and under your wing and made us feel safe and loved…there are just no words to show our appreciation. Thank you for loving us. Thank you for loving Braden and getting him to where he is today. Thank you to everyone who called the next day to check on him and see how we were doing. Kate, thanks for calling me and giving me the verbal kick in the pants I needed to remember that we do know what Braden needs and that we were/are capable of taking care of him like he was in the hospital. Thank you to all my girls who have traveled to Ames to visit Braden on their own time (Angela, Shelly, Sarah, Kristin, Laura, Kate, Kelly, Erin, Bri, Annalicia, and Anna to name a few) Thanks for keeping in contact with us and continuing our friendships even after we’ve left your care. You have no idea how much that means to us. And thanks to Sarah who spends 1-2 times a month working as one of Braden’s homecare nurse. I think I look forward to your work day as much as Braden!

And BIG thanks to all our friends and family who have supported us through this crazy busy year and welcoming B with open arms. I know its hard to make room for us and all his equipment, but with every event B can go to is just another testament to the fact that we aren’t going to let anything stand in the way of him having as many opportunities in life as possible!

So here are some pictures from the day B came home. I hope to have many more anniversary posts after this one :)

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And last but not least…a then and now picture. Look how far you’ve come buddy <3

January 30, 2010 – 5 lbs 0 oz. 14” long ( 34 weeks gestation)



November 16, 2011 – 24 lbs and 26” long (21 months old)


Monday, November 14, 2011

Oh cold and flu season…you rude house intruder!

Well as you can guess from this title its that time of year again :/ Ugh I dread the winter months but on that in a short minute. On Thursday B had his cleft repair check-up and ABR hearing screen. Everything looked great! It took about an hour for the sedative to work and it almost had an opposite affect on him. Instead of getting sleepy he got super squirrely and was yelling up a storm in the sound proof room but finally he crashed and they were able to get a successful test completed. As expected he has some minimal hearing loss in his right ear due to fluid behind his ear drum (this is the ear that they were unable to put a tube in) and his left ear (with the tube) is just fine! The craniofacial doc also said his cleft repair looks wonderful and lifted his restrictions except he is to not have his top gums brushed quite yet because he is still growing new gum tissue. She also felt that he would not require hearing aids to compensate for his right ear and felt he was OK for language and speech development!

Everything went downhill after we left Iowa City though. I picked Jacob up from daycare on our way home from IC and he was already wheezing. By 10 that night he sounded like an angry seal! I had finally made a decision to take him to the ER as he seemed to be getting worse and not better with a neb treatment and hanging out in the cold air. Jake and I jetted off to Mary Greeley and got in right away and within 30 minutes he had gotten a steroid shot and they sent us on our way. Fastest trip to the ER E-V-E-R!!!!! By Friday he still sounded like crud but it had turned into a nasty cold by Friday afternoon so we headed back to Fairbank/Waterloo for my nephew’s 7th bday party.

On Saturday Evan was invited to Phillip’s friends party at the bowling alley and he had a great time. It was really sweet, Phil gave Evan a little bowling lessen before he went. They looked so grown up! We ended up having to ask for a kids ramp since the gate would drop in front of the pins before Evan’s ball made it down the lane! He had fun though. I had to interrupt him a couple of times during the pizza as he kept trying to tell Phillip all about the rollercoaster we had bought him that he hadn't opened up yet. Poor guy he was so excited he couldn’t contain it!

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Afterwards Shelly, Phil, Evan and I went to my favorite restaurant in Cedar Falls, “Peppers” and ate some yummy chicken fingers and shrimp..YUM-O! Then Evan and I headed to Great Gma and Gpa Boesen’s house and he cleaned them out of every Kit-Kat they had in their house!

As you may have guessed it, late Saturday Braden started feeling like crap and was crabbing whenever anyone looked at him or if Jacob even made a peep. Every time Jacob coughed Braden threw himself into a hissy fit and could not be calmed down. Fast forward to today and he woke up around 2 am with a breath rate/respirations of 75 breaths/minute (normally 40-45), heart rate of 180 (resting HR usually 130-145), oxygen saturation of low 90s/high 80s (usually 96-100) and a fever of 103. Poor dude was not very happy. Plus his secretions were starting to turn a nasty yellow color. Adam and our nurse took a trache aspirate and he drove it down to Blank Children’s hospital to culture. We were also able to get him into his pediatrician today and he is now on amoxicillin until the cultures come back and on a stronger dose of albuterol. He seems to be doing a little better while the Motrin controls his fever but he’s still really junky in his lungs. Hoping whatever this is it passes quickly!

Not much else to report here on the home front since we are all very sleep deprived!

Please send prayers and healing thoughts to the Diallo Family as they try to heal from the loss of their sweet boy Oumar. He was a Campomelic brother to Braden and all the other CD kiddos. He sadly passed away on his first birthday due to complications from his severe bronchomalaysia. He had recurrent episodes where he stopped breathing and this last time they were able to get him back but he had suffered irreparable brain damage. Amazingly he was taken off life support and breathed on his own a full week when he had never been able to for more than 2 minutes before. His parents are at peace knowing Oumar fought to the end but they are still reeling from the loss of their sweet little boy. Please send prayers for healing and comfort to them if you can.

And finally here are some of our family pictures as promised as well since Pam is awesome and got them in the mail so quickly :) We are also looking forward to this Thursday at the Byersdorfer house…it’s a HUGE milestone for B and us…Thursday will be Braden’s 1 year anniversary of being HOME! Hoping this bug doesn’t keep us from celebrating this major event!

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Sunday, October 30, 2011

Cleft palate repair, pumpkin patch, and trick-or-treating OH MY…

Sorry this is a long overdue update. On October 18th, Braden went in for his cleft palate repair surgery in IC and we have been on the go ever since! I would have loved to say that his cleft repair was uneventful but it was anything but! OK, so that’s not fair, his cleft repair was uneventful, it was the disaster leading up to it that wasn’t!

On Sunday we dropped the boys off at my parents in Waterloo and on Monday headed to IC for his pre-op appointment. Everything was going great. We were scheduled for surgery, had just checked into the hotel and headed to Old Chicago to eat dinner with Uncle Caleb and Rosie. He hadn’t finished eating in the room when Uncle Caleb arrived so we loaded the feeding pump/bag up and headed to eat. While we were ordering I didn’t know that Adam had wrapped Braden’s feeding tube around the back of his stroller to keep it off the ground. In my infinite wisdom, I decided Braden would be better suited sitting on my lap so I just went and grabbed him and in the process, ripped his G-tube right out of his belly :( If you know anything about Braden’s G-tube you know that it is not the balloon type and is VERY difficult to remove it…that is unless there is enough tension on his feeding line. UGH I was so mad/upset with myself. He cried for about 30 seconds and then just snuggled into me for the rest of the nights activities. We missed dinner, tapped a gauze pad to his hole in his tummy, and rushed to the ER at the U of I Hospitals. Thankfully they got us in right away to keep him away from all the sick kids in the waiting room.  Unfortunately, no on in the ER knew how to put in his G-tube.(Now we know they probably could have got it in but his tract in his tummy is so tight/scarred it needed to be stretched to get the new one in) Anyways, I digress. We ended up spending 3.5 hrs in the ER and they found a balloon Mic-Key and put it in. I think we got back to the hotel at 11pm with a surgery check in at 6 am the next morning.

On to the morning of surgery. We were unpacking everything to bring Braden into the hospital for his surgery admission and while Adam was burping Braden’s G-tube it fell out…AGAIN! So again we were rushing back into the hospital to tell them that they needed to fix this prior to surgery. Long story short, the ER doc filled the balloon with air and it should have been filled with water which is why it fell out. The anesthesiologist was able to put it back in, it was causing Braden IMMENSE pain, he was freaking out,  I lost it and immediately started crying when the head anesthesiologist asked if I would be taking Braden back to the OR, she decided I wasn’t fit to go back there so I handed Braden off to Adam, then they opted to call a I surgeon to come in and put a new G-tube in correctly while he was sedated. It was beyond a mess in the hour leading up to his surgery!

His surgery lasted 4.5 hours. They did an awesome job of calling us every 45 minutes to keep us updated on the progress. 30 minutes before they brought him up, the head RT came down and got us from the surgery waiting room to have us set up his home vent to save us some money on using a hospital vent and get his room ready before they brought him up. They were unable to work in his mouth like they thought due to the small size of his mouth so they ended up having to cut into his hard palate and work front to back to close it up. They were only able to get one tube in one ear as the other ear was far to small for the smallest tube to fit. They also clipped his tongue. There was one small hiccup in the entire procedure though. He was originally given gas through his vent to keep him sedated. With the way his head was angled back, his trache stoma was being stretched so he had a pretty significant leak around his trache. He was able to stay ventilated but the surgeon was starting to get sleepy due to the whiffs of anesthesia she was getting thru Braden’s leak. They decided to put an IV in from there and things went off without a hitch!

I was very nervous for when he awoke from surgery as they had warned us some kids don’t react well from coming out of anesthesia. Well, Braden was the EXACT opposite. He woke up extremely happy, was smiling, licking his lips like crazy and was talking to us. What a relief! He wasn’t a big fan of his arm band restraints but he quickly got used to them. They kept him well drugged up so he slept the rest of the day and night and we were out of there by 2 the next day!

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OK, you all know Adam and I and how much we love the Cyclones and despise all things Hawkeye. But, I will tell you that the University of Iowa Children’s hospital is BY FAR one of the best hospitals we have ever stayed at. The staff if incredibly nice, easy going, listened to everything we asked and had Braden’s best interests in mind at all times. They let us do everything we do for him at home, no questions asked. When he looked in pain, they had meds waiting for him. They set us up with a Care Coordinator who took on our family and will be working with all the doctors to try and schedule as many doctor visits in one day to minimize our travel time. They sent the head RT into our room to discuss home vents and things we should/could be doing for Braden. The surgical team visited Braden 3 times in the day and a half we were there and we never ONCE felt like they didn’t have a grasp on his/our situation. Not to mention their PICU rooms were fairly large, they had a family locker room with 2 showers, and were just an amazing medical staff to work with! It really made it a pleasurable experience when it almost certainly would not be!

The boys had a great time at my parents so a BIG THANKS goes out to them for watching them for 3 days while we were in IC. I hear they were great for them! They napped, went to bed without issue and ate everything put in front of them (something the NEVER do for us!) what suck-ups ;)

Braden has done remarkably well recovery from this surgery. You would never know his entire mouth was hacked up! As long as he Ibuprofen every 6 hours he was relatively happy. Unfortunately he seemed to be in the most pain from his new G-tube. He was very irritable and gassy and we were unable to burp him like we had with the non-balloon G-tube. We finally convinced our regular GI doc in DSM to change it out to the non-balloon and he got that done on Thursday. Poor baby, he was in a ton of pain since they had to stretch the scar tissue in his tummy to get it to fit but it has done WONDERS for him! He no longer is irritable/crabby and we are able to help him relieve gas so we are back to having our happy baby back!

So now on to fun things. Last Saturday my cousin Sara and her boyfriend Jordan (or “Georgia” as Evan calls him) had two free tickets to the ISU/Texas A&M football game so they invited Evan and I to go with them. It was awesome! Sara’s company has a suite so we got to experience living the good life! Nothing beats ISU football, beautiful fall weather, and OH YEAH…FREE BEER ALL THRU THE GAME!!!! BIG THANKS to Sara and Jordan for letting me have a much needed break! Love you guys!

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Last Sunday we took the WHOLE ENTIRE family to the pumpkin patch. It was pretty surreal having us all there. Last year it was just Jake and Evan and we went straight to the NICU after to visit Braden and bring him his pumpkin. How awesome for him to be able to enjoy it this year as well! It was pretty windy but after a few minutes Braden adjusted just fine! Thankfully Aunt Wendy went with us again this year and helped coral the boys! We spent about 4 hours there and had a great time!

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Yesterday we did family pictures at Greenwood park in DSM and from the sneak peeks I got, they are going to be great! More to come when we get them back!

Today we met the Hopp family and all went to Night Eyes at the Blank Park zoo. The boys had a blast! We had the entire superhero crew with us. Jacob-Spiderman, Braden-Superman, Evan-Batman, Caleb-Wolverine, and Grady-Capt. America. They were adorable! The boys had a great time watching the otters, playing on the playground, and getting candy. Braden even got to play on the playset and LOVED chasing the other kids with daddy! Hope everyone has a great Halloween and were able to enjoy the last few warm weekends of the fall!

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