Saturday, October 31, 2009

Joshua's Journeys #17- Halloween and Home Equipment

Happy Halloween! Last year in the NICU, Josh was all decked out in the Corduroy costume that Nurse Stephanie had made for him...ears and all! He sat in his stroller and I walked him around the NICU as we passed out candy to nurses, therapists, and anyone else we came across (old enough to eat candy of course!). Josh's Halloween treat bag was filled with candy and we put it on his bedside table after our walks for those to pick at throughout the day.
Mommy spent a good portion of the morning with Paul from the home equipment company we were going to be using when Josh was discharged. Since the anticipated day was coming soon (finally!), we had to learn the equipment that Josh would be needing at home. It is slightly different than that of the hospital. We had to make sure we had enough outlets and power to support the equipment as well as how to use, clean, and order equipment and supplies. Josh would be coming home with a stationary suction machine, portable suction machine, tube feeding pump, tube feeding bags, suction catheters, humidifier for his trach (trach collar), pulse oximeter (don't even start us on this one! Josh and pulse ox's don't go together!), lots and lots of tubing, extra motors, and other ancillary items (ambu bag, oxygen tank, etc.).

Back to Halloween, Josh was Corduroy for Halloween because it was one of his favorite books. We read it to him often, and he looked at the book from his crib. He even had Corduroy's Halloween book for the occasion! Josh was a very cute Corduroy.

Wednesday, October 28, 2009

Joshua's Journeys #16- The S Word

Oh shunt! Today is the anniversary of Josh's VP shunt surgery. This is not something that is part of CHARGE Syndrome, but nonetheless Joshua needed one. Joshua had hydrocephally, what one of the NICU docs described as "lightbulb shaped head." The shunt is a device placed in the head that helps take cerebral spinal fluid off of the brain. The fluid is reabsorbed by the body. Basically, there was a device put in Joshua's head which had a long tube that went down the side of his neck all the way towards his stomach where the fluid would then be reabsorbed by the body, taking the fluid off of his brain. The "VP" part of the shunt is ventriculo-peritoneal, meaning ventricles of the brain, to the peritoneum which is the belly. Sounds tricky, and it is. The shunt was what we felt was Josh's biggest challenge. We knew he and we could deal with all the aspects of CHARGE, but when you are messing with the brain it is very serious business. We were told that there would be the possibility of shunt revisions--in which he had--where they remove the shunt and then place it on the other side of the head because of infections. After all, the shunt is a foreign object to the body. The shunt is programmable in that you can adjust how quickly the fluid is being taken away. If you go too quickly that can be detrimental, as would leaving too much fluid on the brain. Measuring head circumferences every day became part of our routine. And once home, Josh had to go weekly to the neurosurgeon for checks, but more of that to come later.

At any rate, today was Joshua's first haircut. He actually was born with a good amount of hair, very blonde and very long and thick. Poor babe had to have his head shaved where the shunt was going to be placed. So nurse Tina did the honor of cutting some hair and made a cute card for us as a first haircut keepsake. The neurosurgeon was our least favorite person involved with Joshua's care, and it was a shame because we would have to become very involved with him due to the complicated issues that can arise from shunts. Again, more of our frustrations later, but if you remember the post "Andy is Toast" we were not happy with him on many occasions. Unfortunately I do not have many positive words to say about shunts, hearing the word "shunt" makes my stomach turn because of all the issues that can go along with it. Joshua's crazy shaved hair allowed the opportunity for him to sport some really cute hats. It took some getting used to, there were many times we'd look at him and he'd be kicking his legs because he managed to yank his hat over his eyes. This happened a lot of times after he was discharged and would be driving him to and from appointments. I'd look in the rearview mirror, hearing him in need of suctioning, and he'd be crying from his hat being over his eyes. It was frustrating to have to stop to suction and stop to move his hat, but he needed the hat on to keep the gauze over his wounds after the surgery. Regardless, Josh looked so cute in all of his hats. And I still think that with the hat on (so his head wasn't shaped like a light bulb) Josh looks so much like Auntie Christy!

Recooperating from surgery:

Josh and his many hats:

Monday, October 26, 2009

Pumpkins, Football, and NICU Reunion Party!

Friday night we went out between raindrops to Sonny Acres to get our pumpkins. Last year Joey was there as well, but he slept the whole time. This year he was a lot more interested in the pumpkins, decorations, and animals. It was a little on the chilly side, so we weren't there long. Uncle Chris, Auntie Christy, Andrew, and Grandma were there too. Since we still don't have counter tops and a sink at our house, Auntie Christy invited us all over to carve our pumpkins together. Grandma ensured we had enough energy with taffy apples and candy, while Auntie Christy washed and cooked the pumpkin seeds. Joey enjoyed watching Daddy carve his pumpkin, and tried to help Grandma with hers.

Purdue wins again!
On Saturday Joey, Daddy, and Grandpa watched the Purdue vs. Illinois football game. Daddy rooting for the Boilermakers and Grandpa the Fighting Illini made it a fun afternoon. Joey enjoyed the snacks more than the game, but hung out with the guys nonetheless. Daddy was very happy that Purdue won! Thank goodness since Joey is revving up to be Purdue Pete for Halloween next weekend!

NICU Reunion Party
Sunday was the CDH Halloween NICU Reunion Party. All of the graduates from the NICU, nurses, doctors, and therapists got together for the big bash. It was so nice seeing so many people again. The NICU is definitely a family to us. They have seen us at our weakest and strongest moments and have done so much more than medical care. We have made some lifelong friends and definite memories that will forever be in our hearts. It was great to see other parents and kids that were in the NICU for an extended amount of time like Joshua. We caught up on their children's progress and they were able to see Joey again (some barely remembered him being there), and informed them of Joshua's passing. They all remembered Josh and his uplifting spirit. We spoke with some of the doctors, some of the nurses we don't usually see (it was so nice seeing Stephanie and Theresa!), and of course saw our favorites (Bethany and Tina). We missed Amy and Cathy (ST), but will catch up soon. There was so much going on and everyone was having fun. Joey got a t-shirt, a pumpkin to decorate, a family picture, there was a percussion band playing (nurse Jan rocks!) with bubble machines, face painting, cookie decorating, coloring, food, drinks, and more! It really was a great afternoon, and we could feel Josh beaming from above (may explain why we finally had a mild, sunny day!).

Tuesday, October 20, 2009

I'm a Godmother Again!

October 18 I was so blessed and honored to be the Godmother of Juliette Kathleen (my first Goddaughter!). She is such a precious, sweet girl who behaved so well during the baptism. I am so proud and excited to be her Godmother. The baptism was followed by a very fun party where Joey was able to flirt and play with Abbey (Juliette's sister)as well as many other kids. Joey was a little outspoken in church, especially when he saw me stand up, but Daddy kept him from too many outbursts! Juliette slept peacefully through most of the ceremony and even gave a little smile from time to time. She was by far the best mannered baby there, and it goes without saying the prettiest too!

October 10 and 11

Another big change in our house right now is that our kitchen is being completely redone. New floors, cabinets, counter tops, sink, fridge, lights... It has been a bit messy, and a bit frustrating not having the accommodations of a kitchen, but also exciting watching it all come together. The weekend of October 10 and 11 we primed and painted the walls of the kitchen and utility room to prepare for the cabinet installation. It was a busy weekend, and I'd love to show the transformation, however we are still waiting another 10 days for the counter tops and sink to be installed, and Phil wants to wait until it is all complete to show the whole change.

Marathon Morning- October 11
It has been a very long time since I have been able to run a marathon! The last time I actually ran a marathon was up until the last few weeks before getting pregnant with the twins. I was determined to get in a marathon to make my goal of running 8 (my favorite number) marathons before having kids. So I trained and ran in the "Second Floor/OK Go Marathon". The marathon was run on the second floor of my house on the treadmill. The OK Go part came into play because at the time the song OK Go was popular and the video of the song was of a few guys doing a intricate routine to the song on treadmills. It was a little monotonous to say the least, but I had good music, and at times especially near the end great company. Christy and Andrew made signs just like they were downtown cheering me on, my mom rang the obnoxiously loud cow bell, and Phil made sure the playlist was good. I can not wait to run another marathon, so watch out for next year!

In the meantime I decided to volunteer at the Chicago marathon, helping with the start corral. 3 years ago when I was unable to run I volunteered at the marathon as an "Ask Me" person. So this year was a different job. Waking up at 4am to get downtown was not as bad as it seemed. Partly because this little girl likes to wake me up between 3-5am every morning lately, and partly because I think I've been trained to not need as much sleep anymore. At any rate, I bundled up and went downtown to help out and cheer on 40,0000 strangers. When I got to the volunteer compound I was put in a group of extra people. The leader was ready to stick me with the elite runners, until another couple spoke up and said they needed to get out early to do some finish line volunteering as well. So close to seeing the elite up close, but instead I was shifted to the very end of the corrals-6 hour plus runners. It was nice to see their enthusiasm and dedication as they lined up for so many different reasons, so proud of how far they've come and what they were about to accomplish. It was pretty frigid, but a good morning overall. (After getting back home it was back to painting in the kitchen!)

Joshua's Journeys #15: To Everything Turn, Turn, Turn

Sorry it has been so long since we've updated. A lot of changes have been happening, some easier to deal with than others. Going back to the beginning of the month, October 3 and 4 Phil and I spent the weekend in Josh's room. There really are no words to explain what was happening in our house that weekend. Joey had a great time being shipped off to Nonna and Grandpa's house (thank you!) while we were busy working in Josh's room, cleaning it out, painting, looking through medical supplies, retracing steps and memories. Change is inevitable. We knew we would have to get into his room and sort through things and turn it into a little girl's room. It had been nice keeping everything as it was. We could walk in and grab a suction catheter, a stuffed animal, or look at the tapestry that Josh would smile at every morning and let ourselves believe for a few moments that he is still here. Joey even enjoyed playing in his room. We have kept quite a bit, but have a lot to donate to other CHARGE families and Easter Seals. Change is never easy, but this was near unbearable. There are no words to explain the thoughts or feelings we have every minute of every day about Joshua. I just wanted to post some pictures of our beautiful first born baby. We miss you more than words.

And here is the room somewhat redone. We haven't taken pictures of the room with all of the furniture, but you get the idea...