Saturday, November 28, 2009

Happy Thanksgiving

Joey had a fun, family filled Thanksgiving. We went to Nonna and Grandpa's for Thanksgiving and celebrated with Uncle Chris and Aunt Brooke, along with their dogs Ruby and Ella (although Joey still called them Java), Auntie Steph, Uncle Don, Uncle Kevin, Uncle Mikey, Nonna, and Grandpa. Of course it was a yummy meal, and afterwards Joey played with everyone's piles of change as they played cards, taboo, and enjoyed each other's company. It was a very fun day.

On Friday, Uncle Chris and Aunt Brooke came over for our Christmas exchange since we won't be seeing them at Christmas. Joey enjoyed playing with them and had fun opening his gifts...a nice new warm coat and trucks- his favorite! Thank you Uncle Chris and Aunt Brooke, we hope you have a safe trip back. Can't wait to see you again in a couple of weeks!

Thursday, November 26, 2009

Other Happenings

Last week Joey went to the library to decorate an ornament for the Christmas tree that our library will have at the Brookfield Zoo this season.

Over the weekend we had Uncle Paul, Auntie Katherine, Ben, Abbey, and Juliette over for a day of fun. We played, went to the Cosley zoo, and went for ice cream!

Before Uncle Mark, Auntie Miya, and Nathan came over on Sunday Joey and Daddy had to finish the kitchen by putting the door back on the hinges. Sorry we have no pictures of our get together, we are not as good with the camera as some think!

Joshua's Journeys #21 Thanksgiving

The day before Thanksgiving Joshua was discharged from the hospital. We were so thankful to have him home, but hesitant about taking him out for the holiday. Phil, not wanting to miss his mom's turkey dinner went for the family festivities while I stayed back with Josh and Joey. After only an hour or two I decided that both boys should have a happy holiday, surrounded by family and all the chaos that goes along with it. So I packed myself and both boys up and headed over to Nonna and Grandpa's house for dessert, games, and family fun. Everyone was surprised and excited to see us all there, and I was so glad that I decided not to sit back and let the day pass but let these little boys experience it all! Happy Thanksgiving!
(Sorry about the slideshow, they are old pictures and I need Phil to get them in our picasa album so just use the link below)

Monday, November 23, 2009

In response...

In response to a comment about being too nice about the neurosurgeon in the latest Joshua's Journey regarding his shunt revision, please see the post "Andy is Toast." It explains the frustration and lack of confidence to say the least for this particular doctor. Andy was the reason why Phil started calling all doctors by their first names (even though he went by Drew) after all we were to be a team, or if anything we were more in charge of Josh's care from this day forward. The doctor was very quick to leave the room instead of answering questions, and the worst part of the whole ordeal was that Phil was on a business trip the day that Josh was admitted and didn't get home until the next day. Poor Tina had come in to help with Josh's IV, Phil called me back from my incesant messages for him to call me, and I handed the phone over to Tina to spill the news. Hmmm...probably not the way to tell him we were at the hospital again, but with Tina's voice Phil knew exactly where we were. After his return it was no playing around but forcing the doctor to talk to us and explain all options for Josh. I guess I was a little nice in the last post, but Andy was definitely not a favorite of ours.

Friday, November 20, 2009

Joshua's Journeys # 20 Shunt Revision

Today is the day that we headed back to the hospital for a stay. Josh's shunt had been healing, and we were applying the ointment as we should. We were told about the expected granulation tissue, but saw something that didn't quite seem right. So a few days prior we brought Josh to the pediatrician to look at his shunt. He told us it was granulation tissue and it was fine. Today I got a shocker as I took Josh in for his regular routine shunt check. They saw the white area and said it didn't look right. After a few moments it was determined Josh would be admitted. We weren't exactly sure at the time what his stay would involve. As the day grew longer and longer more questions arose, and finally it was decided that Josh's shunt would have to be revised. There was not enough skin covering the shunt to heal over, so what we thought was white tissue was actually the shunt popping through. So surgery times to extract the existing shunt (this is the time that we nicknamed him "Massive Head Wound Harry" after the SNL skit because Josh's poor head had two big slices in it). Josh had to lay still in bed for 3 days while the cerebral spinal fluid drained into a bag since the shunt wouldn't be working. And then a few days later a shunt was placed on the other side of his head. So now he really had crazy hair! Several haircuts in the first 4 months of life! We were worried not only about if we'd be home for Thanksgiving or not, but also about the progress Josh had been making. He was doing so well at home. He was comfortable in side lying positions, we were working on him sitting up, he loved being propped in a boppy and playing with his toys, and of course feeding by mouth. We were not allowed to do any of this with Josh when he was in the hospital because he had to lay still to keep the fluid going into the bag and not his noggin.

On the brighter side of things, Josh gave us many smiles as he showed off his skills of playing with a balloon for the first time. He had much better control and knew how to manipulate the balloon so well, a skill Joey didn't figure out for a few more months. Josh was always so patient and willing to show us how much the small things matter. It was difficult once again having Joey at home, and one of us with Josh. One of us would spend the night in the PICU, and one would spend the night at home with Joey. Joey came to visit during the daytime, but it was a hard week for everyone especially after finding our groove at home for the past 2 weeks. Josh was also visited by some of his favorite people from the NICU: Tina (who helped with the IV since Josh was such a hard stick with his tiny little veins), Bethany (who brought him a new snowman blanket), Amy, Carl, and Cathy to name a few. They all kept our spirits up and enjoyed Josh's company while he had to take it easy for a few days.

Friday, November 6, 2009

Joshua's Journeys #19 Homecoming!

"I can feel you breathe, I can feel your heartbeat faster. Take me home tonight! I don't want to let you go till you see the light! Take me home tonight! Listen honey iust like Ronnie sang: Be my little baby!" (Take Me Home Tonight, by Eddie Money)

Last year today was the best day of our lives. Josh was finally, after 126 days (but who was counting?), discharged from the NICU. Josh's homecoming was a pure joyous occasion. We couldn't wait to get him home. After a goodbye to Josh's favorite nurses, exchanging of gifts and well wishes, Phil played "Take Me Home Tonight" (yes, by Eddie Money) as we left the NICU. Tina, one of Josh's primaries, had tears in her eyes as she hugged us like her own kids, helped us all into the car and watched us drive away. We of course have kept in contact with her, Bethany, Amy, and a few other of Josh's favorite "NICU aunties."

Josh knew he was going somewhere special. After 126 days he saw his first ray of sunlight (although it really was a cloudy day), breathed his first breath of fresh, outside air, and had his first car ride. He was extremely content the whole way home, gazing out the window, not needing suctioning or assistance one bit. We continued playing his song the whole way home, and as we pulled into our driveway we saw our house decorated by his aunt and cousin. Josh first met Java, which Java knew there was another little one coming home since we would bring Josh's laundry home to be washed and Java would sniff, and play with some of his clothes before we'd wash them to learn his scent. Java was very protective of Josh, just as she was with Joey, but it seemed even more so with Josh. She would guard him and stay close by as much as she could. After his greeting with Java we brought Joshua up to his room to see what he thought. We got a special cookie cake delivered to us from our friends (they know Daddy loves his cookies!) welcoming Josh home. That evening we even got a visit from the local police department checking in on Josh to see how he was doing and to meet him in case there was ever an emergency, they would know a little bit about him. It was so wonderful to see Josh watching Java, playing with his brother on the floor, being held in someone's arms on our comfy couch, and having our family together under one roof for the first time that night.

Monday, November 2, 2009

All Soul's Day and Joshua's Journey's #18 Rooming In

All Soul's Day
In celebration of All Soul's Day we had a few masses to remember and pray for Josh and others who have passed. One at the cemetery, and one at our church. The remembrance mass at our church was nice in that they said Joshua's name and Phil received a candle lit from the Paschal candle, and then placed it on the steps by the baptismal fountain. It was a very moving ceremony, with a lot of songs and scriptures that we had for Joshua's funeral mass.

No one day is easier than another, Josh is in our hearts and our heads constantly. Thinking about the days getting shorter, colder, and darker earlier, we remember the warm days of summer. Here is one of the times we spent picnicking at Josh's marker.

The Lord is my shepherd, I shall not want. He makes me lie down in green pastures. He leads me beside still waters; He restores my soul. He leads me in paths of righteousness for His name's sake. Even though I walk through the valley of the shadow of death, I fear no evil; for You are with me; Your rod and Your staff, they comfort me. Surely goodness and mercy shall follow me all the days of my life; and I shall dwell in the house of the Lord forever. -Psalm 23

Joshua's Journeys #18- Rooming In
A year ago today we were put to the test of rooming in with Josh. We had been very involved with Josh's care from the beginning, so we had no problems in proving our competencies. The task was to spend the whole day with Josh outside of the NICU caring for him to prove we knew his care for when he was to be discharged. Some people thought it was a crazy idea for us to think about brining Joey with, since he would be a distraction, but I fought saying he will be at home with Josh and we would like to be a family. We were very confident in caring for Josh, and many of Josh's primaries knew that we would be fine. There has been a history of other parents not being able to do the care for their child. Josh would remain hooked up to the monitors that the NICU staff could see his O2 sats, heart rate, and respirations. We were allowed to take him off the monitors to bath him, if we called them to let them know that was what we were doing. If there was an emergency there were switches we could hit to have help sent in immediately. We did not need anyone to help us. We did great at taking care of all of Josh's needs, we got him playing with his brother again, a nice bath, and a photo shoot too! We had been so involved and consumed with Josh's care all along that we had no issues or questions. We had an extra crib for Joey so it was very much like it would be at home with twins. We proved ourselves above and beyond. A few more days and Josh would be discharged.

Sunday, November 1, 2009

Happy Halloween!

Joey celebrated Halloween by dressing up as Purdue Pete...the mascot for Purdue. When Daddy is watching the games on Saturdays Joey will often stop what he's doing, grab his milk, and sit on Daddy's lap and watch the game. He really is a fan! We didn't make it out to a lot of houses, but he enjoyed himself a lot. Andrew seemed to really catch on to the whole "getting treats" idea and was really excited about it! I'm sure next year the two will be up and down the block faster than we can chase after them!

Other Fall Fun:
The day before Halloween Mommy took Joey out to Grandma's house where she was watching Andrew. We all went to the library for a Halloween adventure! Joey gave his pumpkin to Java thinking she needed it as a costume. Joey was dressed in Andrew's candy corn outfit from last year, and the hat and socks that our neighbors got him matched perfectly! Andrew loved the hat too, and keeps calling it his party hat! A few other pictures that I threw in here are of Joey playing in the leaves and enjoying all of the autumn colors and Joey playing "Mr. Fix It."