Trying To Get Into A Routine

We have been back now for a week and we are still trying to get Robbie back into his normal routine. He is great during the day, but has really struggled sleeping at night. It might have something to do with the fact he gets really uncomfortable when he has a load in his diaper, which is understandable. He also didn't get good sleep for the week that he was in the hospital and had to be held a lot, so we are trying to get him back to sleeping on his own.

Other than the lack of sleep, he is doing really well. The poopy diapers aren't near as bad as I thought they would be and it is really nice to not worry about his bag anymore. He loves being at daycare to play with all of his friends. He is just a go-getter at home, walking behind his walker and playing all over the house. On Sunday, Grammy and Uncle Rog came to the house so he was able to play with them. On Saturday we met Grandpa, Nana, Boston and Caroline at Jason's Deli for lunch. He loves seeing all his family and loves all the attention that they give him.

We are hoping to have a relaxed week this week, just hanging out with the family and enjoying some time at home. We had our basketball banquet last night and Marty, the phototgrapher, weas able to snap a few pictures of us. Robbie loves being around all the girls on the team and is such a little flirt. He also loved when everyone would clap so he could join in with them.

We're Home

After five days in the hospital, they finally let us out on Friday around noon. Robbie is doing great and it is really weird changing a dirty diaper and not worrying about a colostomy bag. He is such a tough little customer, just cruising around like he didn't have anything done to him a week ago. On Friday, after he got out, we were able to head over to the world famous Cincinnati Zoo. As we walked up we saw that the zoo closed at 5:00 p.m., which gave us an hour, and it started dumping rain. After a 15 minute delay in the Zoo Store, we headed out and were able to see some really neat animals. Robbie would get so excited when he would see each animal, espeically the wolves, gorillas, lions and polar bears. Because of the short time on Friday, we made sure we went back Saturday morning before we headed out. The pictures above are from Saturday. Even though it was a little cooler, Robbie had a great time and really seemed to enjoy all the animals.

After the zoo, we cleaned up our room at the Ronald McDonald House and got on the road about 1:30 p.m. We were able to drive to the west side of St. Louis on Saturday and Robbie was great in the backseat. We then drove the rest of the way in on Sunday and were able to get back around 2:00 p.m. We took a nice long walk with Robbie in his wagon and went to the grocery store. We are now trying to get back into our routine and hope that we can have a few months of normalcy before we head out to Baltimore and Johns Hopkins to see about Robbie's bladder. Thank you for all the prayers and support during this past surgery, it really helps us out a great deal.

Poopy Diapers Are Here

Yesterday was a good day for us, as Robbie had his first official dirty diaper. Dr. Levitt came in to the room around 1:00 p.m. to check in and Robbie was sleeping. About 10 minutes later he woke up and we started changing his diaper, not even expecting anything to be in there, but to our surprise we had a little present. He has since had poop in each diaper that we have changed and today is starting drink clear liquids. Hopefully by tonight he will be able to have some milk and then get off the IV.
We had another really rough night last night. He is having some anxiety about his bed now and the second we put him in there he starts to cry and won't get comfortable. I finally got him to sleep a couple times last night, only to have the nurses come in and wake him up. We were up, wathching TV, from about 2:15-6:15 a.m. Don't know if there is enough coffee in this hospital to keep me up for the NCAA Tourney today.
We still don't have day when we are getting out of here, but the poop in the diaper definitely speeds up the process. Robbie is not on much pain medicine now, so once the IV is out he will be able to cruise all over and start to get back to a normal day.

Moving in the right direction

Today has been a better day. Robbie was almost back to his old self today. He was standing up, walking around the crib, charming the nurses with his smile, and of course being extremely nosey (he always has to be know what is going on everywhere). This was all mixed in with numerous naps throughout the day. We were able to give him fewer doses of Morphine today which helped contribute to his alertness. Fewer doses also means that he is starting to feel a little better. Which is so comforting to know after the long day we had yesterday. The nurse suggested that we take him off the morphine and try a different pain medicine that would keep him from feeling so groggy and have fewer side effects. So the last dose of pain medicine we gave him was the new medicine and it seems to be working well. We are hoping that getting him off the morphine will help wake his bowels up. He hasn't had any gas or bowel movement yet, so we are optimistic that changing this medicine will help speed that up. Dr. Levitt thought that it might take a little longer for him to have a bowel movement because the area of colon that he reconnected was fairly narrow and since having surgery will cause that area swell it would restrict most of anything that might come through. He thinks once the swelling goes down his bowls will pick up. We are hoping that happens soon, since our sweet boy hasn't had anything to eat since Midnight on Sunday. Not to mention the sooner his bowels move that sooner we get to go home, but that is the least of our concerns at this time.
This evening Robbie was awake for about 4 hours (with the exception of a 20 min cat nap) we were able to walk him around the floor and Skype with his Uncle Nate and Uncle J and Aunt Stac. He was so happy to see his family! While we were walking we also met another family from Kansas City that is here. They have been here for a few months and are getting discharged tomorrow. The girl is in her teens and gave Robbie a picture she painted of a Jayhawk to decorate our room with. Robbie was so grateful to have a color picture up.
While were are walking around the wing today we realized that we have one of the smallest rooms on the floor. We were so bummed when walked past rooms that had a pull out Loveseat that was the size of a double bed. We currently have a chair that pulls out into a single bed. This means that both mom and dad can't stay at the hospital at night. So we are taking turns and one of us is going to the hotel room at night and the other is staying here. We asked if it would be possible for us to switch rooms, but of course they don't have any available, so we will just have to deal with our situation. We are hoping we will be able to get into the Ronald McDonald house at some point, but we weren't able to get all the paper work completed until today so we are doubtful that it is going to happen.
Overall today was a good day and seeing our Little boy smiling again has given us a lot of comfort. We pray that tomorrow is even better than today and that we start smelling that stinky butt tomorrow...:)
Thanks again for all the prayers and support!

Good Night Sleep

Considering we are in a hospital room and they come in and check on Robbie every two hours, the both of us got some pretty good sleep last night. Robbie's was probably based on the morphine he was getting, but he was able to roll over on his stomach and look like he was resting peacefully. Mom was able to head back to the hotel and hopefully slept as well as Robbie. We finally have the pain under control and are starting to see our sweet little boy's personality again. There for a while he was behind on the pain medication and was pretty grouchy, which is completely understandable. So far this morning the only thing that is really bothering the two of us is his stupid monitor that beeps constantly because the leads that it is reading aren't sticking properly. You would think, with all the children that are in hospitals, that they would come up with a volume control or mute button for the rooms that they kids are trying to sleep in. We really don't know what today has in store for us, but hopefully we can start spreading out the pain medication and let Robbie, be Robbie.

Surgery Update

Robbie is out of surgery and doing good. He has a ROUGH day, but is trying to get some rest. Surgery went good with the exception of them poking him 14 times to try to get the IV in and weren't able so they had to give him a central line in his leg. For most babies that wouldn't be a big deal however with Robbie because of his bladder extrophy we don't feel it was a good decision. The IV is right in groin area and this is right where urine falls when he lays down. The entry point of a Central IV is to be a sterile area....sort of difficult to keep sterile when you constantly have urine dripping down on that area. We have STRONGLY recommended that they put a PIC line in his arm. However he will have to be put back to sleep to have that put in.....go figure. Needless to say mom is NOT happy about this and we are hopefully going to get it worked out. He also is in a quite a bit of pain. If you move his hand he wakes up and starts to cry. We are working on the the pain managment side of things right now and hoping we can play catch up and get his pain under control. I am sure sticking him 14 times with a needle and 2 incisions can't feel good.
Please continue to pray for his comfort and body fight off any infections! We will keep you guys updated with how he is progressing.

Safe and Sound

Well we made it back to Cincinnati safe and sound. The trip was very uneventful and we are very grateful for that! Robbie is doing well. Riding in the car this trip was a little more difficult than last trip back in December only because he is becoming more mobile. Being strapped in a car seat for 5 hours at a time isn't exactly his idea of fun. We did stop a few times and let Robbie "walk" around so he could stretch his legs. We stopped just outside of St. Louis on Friday and stayed there and then finished the drive yesterday. We couldn't get into the Ronald McDonald house so we have hotel room at an Extended Stay hotel. It isn't luxury but for the small amount of time we will be spending there it will work perfectly.

We are officially checked into the hospital. We learned that when we checked into the hospital last time we really had nothing to do the day before surgery, so got a little smarter this time and accidentally showed up a little late. Needless to say we probably could have came a little later and still been ok. Suprisingly when we checked in we were put in the exact same room we had last time! We are located right next to the nurses to the nurses station which in so many ways its nice, but at night it can be a little loud. Hopefully we will have a quiet nurses this time and we won't have to worry about them being too loud!

Today they will be doing irragations in Robbies stoma. They squirt saline into his stoma and it makes him empty out. The first one went well, as we do a few more of these I am sure he will get to be a little more irratable. This beats having to do a bowl prep, which we hear isn't very pleasant.

One of the nurses from Child life just came in a put some toys on Robbies crib...he is so excited he can't decide which toy to play with. He just keeps walking back and forth from soother to soother. We are hoping he will manage to get some sleep tonight with all of these toys in his crib.

We thought we would add a few pictures 2 new ones in the room and 2 old flashback pictures from right after we brough him home from the hospital. What a sweet boy and I just can't believe that he is SO big now!

We will keep you updated tomorrow with things as surgery progresses. We aren't sure what time we are going in, but we are assuming in the morning sometime. Please keep Robbie in your prayers tonight!

Colostomy Closure

We are gearing up for our trip back to Cincinnati this Friday. We met Grammy last night in St. Joseph for dinner, so Robbie could see her one last time with his colostomy bag. The surgery is scheduled for Monday morning and we will take off Friday after school so we are there to check in Sunday morning. We are hoping that Wisconsin's basketball team can win their first round game in the Big 10 Tournament so Uncle Zach can try to get us tickets to the semi-finals in Indianapolis on Saturday afternoon. Things are going really well for Robbie right now, he is walking behind his push cart with no assistance now and is just days away from taking off on his own. We will make sure that we keep the blog updated regularly while we are in Cincinnati so everyone knows how things go.