"Fun" Fill Thursday

Here we are already at day ten past Aiden's surgery. This means time for a fill. Since we had such a long gap between rounds, it seemed like we were starting from scratch, except without our fabulous nurses to help guide the way. However, once I started gathering the supplies, everything started coming back to me. Now that Aiden is older and more aware of what is going on, we are trying to make the fills as "fun' as possible. With "fun" really meaning...DISTRACTING one busy toddler from paying attention from what we are doing to his bubbles. 

First step is to bring out the handy dandy iPad. Next step is to apply lidocaine while watching Doc McStuffins. I know, how appropriate right? Aiden was not all that fond of me putting the lidocaine on and sealing it with some press n seal to make sure it stays directly on the port area. Luckily, once I put his shirt on, he seemed ok, minus some occasional moving around to get down from his high chair. The numbing cream must sit for at least 45 minutes. A fellow nevus mom today mentioned how she thinks the waiting before the fill is actually harder than doing the fill itself. Yup! I would have to agree that for ME it is definitely harder and my anxiety levels did indeed build as we got closer and closer but my nerves practically dropped once we started. 

Next step is to help Aiden along with this 45 minutes by giving him a sucker! He sure did enjoy that! Next time though, I think I will hold off on the sucker a little bit longer because he finished it too fast. Ok, so now its finally fill time. I did all the fills last time and I wanted to continue doing them this time too, so we sat Aiden in Michael's lap and my mom hung around to help distract. The most important step is this next one...keep his eyes on the iPad so he doesn't see what Mommy is about to do. Oh and throw in his suckie and blankie for comfort! Can't forget that! 

I decided to fill his lower left chest expander first. I felt a little nervous but took a deep breath and put the needle in. Not one single peep from Aiden. That was a relief and I thought this could actually be ok BUT I still had two more fills to do so I wasn't holding my breath. Since this is the first fill, I was instructed to take it easy so I put 40cc, making the total now at 110cc. 

I then moved on to the back expander since that port is in the same area as the one I just did...on his back.  I cleaned the lidocaine off, applied alcohol swab, let area dry, applied chlorapep swab and he flinched. DARN. Not going to get off with flying colors again. After sanitizing my hands, in went the needle. He did cry for a little bit but after talking to him and telling him we are just filling his bubbles, he was ok. I was envisioning a lot worse from the beginning so this wasn't too terrible. I put in 20cc, making the total 55cc. 

Now time for the third and final bubble in his upper right chest. This one I am not all that fond of for a few reasons. 1. His port is in his arm and toddlers do not enjoy having their arm held down. 2. This expander is slightly purplish in color, not anything to really worry about right now but I want to be extra cautious on filling this one up just in case. As predicted, he didn't like us touching his arm. He did let out some crocodile tears which I hate but since I wasn't putting much in, it was over fast and he was fine. Honestly, I believe it was just fear because he didn't cry or flinch when the needle went it. I only put in 20cc, although it could have taken a little more, but we can make up for it in the weeks to come once its a more normal color like the other two. All in all, I am happy with the first fill and I have complete confidence that we can continue to make them be not so bad. 

These bubbles are going to start looking pretty big early on! Here are the newest pictures of his bubbles. 

Upper right chest at 55cc and Lower left chest at 110cc

Back at 55cc

I am so glad this first fill is over and one with. Now we get to enjoy the week until the next fill! 

Surgery # 4

 Hello ALL!

Well, we are now a little over a week since Aiden had surgery # 4 to get his bubbles. I tried to blog while in Chicago but it didn't work out so I will catch you guys up to speed with how everything went. The weeks leading up to the surgery were actually ok for me. I had already spent enough time building up anxiety about it in July, when we were originally scheduled but delayed due to Aiden's health at the time. We were so ready to get on that plane and get this started.

Our flight was good and it didn't take us too long to get settled into the routine we have when we go to Chicago....check into hotel, grab a bite to eat, grocery shop for the week and organize the room. This is why we fly in two days before surgery...it is simply easier for us to settle in and then have a day to mentally prepare for the dreaded surgery day.

The day before surgery, we met up with the Layland Family, who we met at the conference and just so happen to live in Illinois! We are both members to the Shedd Aquarium so we decided that would be a fun place for us to hang out and the kids to have a blast. RG and Amy's oldest daughter, Ryleigh (2.5 years), is the perfect age to hang with Aiden. They were so adorable! Even held hands for awhile and practically copied everything the other did.  They also have a precious little baby, Emily, who will start her nevus removal journey in November when she is six months old. Aiden was a little jealous when I was holding Emily but quickly moved onto another subject matter! After a few hours at the aquarium, we went outside and watched a little bit of the air show that was going on. It was pretty cool! We had such a blast hanging out with them and its nice to know that we can hang out again the next time we are in Chicago!

Aiden and Ryleigh having a blast at the water table!

On the drive back to the hotel, that's when the dreadful anxiety came into play. Luckily, this time, it was way better managed because I knew what to expect and that even though it may be tough, it is a short amount of time in our life and we will power through it. Once we were back in the hotel, I pulled out Aiden's superhero cape so that I wouldn't forget it in the morning and Aiden looked at me with the biggest blue eyes I had EVER seen and said "OH WOW." I could have cried. It's hard to explain the realm of emotion that hit me there. I know there are plenty of you moms out there who can relate to how that made me feel. He ended up wearing it for the majority of the night.

Despite having to get up early, I really do love being first on the surgery schedule. The fasting is easier, the hospital is pretty much to yourselves when you get there and you don't have to worry about being pushed back on the surgery schedule. So, on Monday, August 20th, we were up at 5am to get ready to head to the hospital. Aiden did a lot better than I expected while waiting to be taken back so that made things a lot easier. He didn't really like Dr. Bauer touching him to show us what his plan was but other than that, he was good. Dr. Bauer told us for sure that we would get three expander's. GULP. I knew it would be fine, it was just difficult to think about doing three injections every week instead of two. Dr. Bauer also said he would do a partial excision on the satellite on his left leg that bothered us due to the texture. After seeing Dr. Bauer, Dr. Gerber came in and explained that he would place the tubes in about five minutes time and that all we would need to do was some ear drops in his ears for a few days.

Being my best little superhero

Checking out his cool new "beep beeps" 

Aiden and Mommy

A smile! 

Daddy trying to read to Aiden! 

Shortly after that, Aiden was whisked away to the surgery room and off we were to wait. Thanks to the versed medication they give him to help ease his mind when they take him, he did great! Dr. Gerber seriously came out five minutes later and said he was done with the tubes. WOW, he wasn't kidding! Michael and I stayed busy the remainder of the time until the last twenty minutes. Those were tough. Just when I thought I was going to lose my mind watching the clock, there comes Dr. Bauer! He said everything had went great. He placed a 500cc expander in his lower left chest, a 350cc expander in his upper right chest and a 250cc expander in his back. He also told us that he filled them up with 70cc in the lower left chest expander and 35cc in the other two so we are off to a great start! He also was able to excise the satellite and would finish it during the next surgery. Phew! Its always great to hear that surgery went great.

Now, normally, they come and get us a few minutes after we speak to Dr. Bauer so we can see him. Well, ten minutes go by and nothing. I wasn't too concerned because he may not have woken up yet so we continue to wait. And wait and wait and wait. It was a very long 45 minutes of waiting. My gut told me that things were probably not going so well. Sadly, I was right. Aiden was having a rough time and to keep from upsetting us, they waited until he was a little more calm to call us back. As much torture as that 45 minutes was, it was the right call because it is tough enough to see them in pain, right out of surgery, but to watch them be inconsolable is a whole other level. When I was finally able to hold him, the nurse warned me that he was holding his breath while crying but that he was ok. That part was not easy to watch. This was definitely going to be tougher than the first time. Not only is he older now and more aware but he has three expander's, stitches in his leg and tubes placed. This was the first surgery that we needed the Tylenol with codeine but he really did need something more than the regular Tylenol and Motrin.

Michael and I took turns holding him and keeping him calm. It wasn't easy. I was being strong though because that is what he needed from me. We could not get him to drink anything so we tried a Popsicle, which did work. Shortly after that, we tried some baby food, which he did ok with and was able to keep it down. Still refused to drink anything and hadn't had a wet diaper yet so I was cautious to leave the hospital just yet. Hours go by and although he won't drink anything still, we were able to get another Popsicle down and he eventually had a wet diaper. We figured that it would be easier to have him back at the hotel so that he wouldn't be so afraid when the nurses came into check on him so we left at around 6:15pm.

I think probably the hardest part was picking him up. There was literally NO good way to pick him up. We tried every combination we could think of but there was too many areas that were sore so we didn't pick him up unless we absolutely needed to. Another hard part was the insane shaking that would come when we did have to pick him up. He was completely motionless sitting on the couch, watching movies but at least some of the crying has decreased now that we were away from nurses and anything else foreign. It was a very long day. Exhaustion was definitely an understatement.

The next day we went to see Mim at Dr. Bauer's office to get a fresh dressing and see what we are dealing with. He was definitely happy to have all that itchy gauze off of him and luckily, he was quite content watching a show on the iPhone, which made Mim's job a lot easier. One of the expander's did look slightly bruised but Mim assured us that was normal but to keep an eye on it and fill cautiously for the first few weeks. His ports were also bruised but that was something we had dealt with before so we knew that would go down as the days went on. Everything else looked great. When she revealed the leg satellite, I couldn't believe it. He said it was a partial excision but seriously, 98% is gone. It is really strange to look down and see basically a stitch and not a nevus. Aiden still calls it his spot though.

Two of his three bubbles! 

The back bubble. Although it can barely be seen near the arm.

His leg as a baby!

His leg now! Whats left can only be seen up close under the stitches. The length of the scar will also lessen when he removes the small amount that is left. 

The next few days after surgery were still rough but we managed. We did find it easier to get out of the hotel and give Aiden something to look at versus watching him look so sad on the couch. Despite surgery, we try to have fun and bring good memories into our trips. We made our usual trip to Gurnee Mills, which was probably the easiest shopping trip that we have ever had with Aiden as a toddler because he just sat there and looked around without one complaint. In that moment though, Michael and I were desperate to see a change. We also went to the Lincoln Park Zoo which is always nice and it wasn't too hot so that made it more enjoyable. We strolled down Navy Pier for the first time and Aiden enjoyed looking at the boats. It was here that we saw a slight change in him. He had been sitting motionless in his stroller for days but he actually moved himself to a sitting position

Finally by day four, we saw a new kid and were so relieved! That day, we strolled down Michigan Avenue, visited The Bean and looked in all sorts of shops. He absolutely loved watching the cars, trucks, taxi's and buses drive by! On our last day in Chicago, we stopped by Dr. Gerber's office to check out his ears which were clear and then went to Dr. Bauer's office to get one more look at his incisions before flying home. And of course to get all the supplies we need for the expansions at home.

By the end of the trip, we were so ready to get back home and get back into a routine. It is a little hard to leave though because we can never predict the potential problems that could occur during the next few months. Luckily, we feel relieved by the simple fact that Dr. Bauer knows exactly how to guide us through anything miles away from where he is.

For any moms out there who are currently deciding to remove and wondering if you are starting too young, please let me assure you that this is way easier when they are younger. It was a huge difference with him being older and more aware. Younger also means that the memories will only be yours, not theirs.

I can't thank everyone enough for the support we received while we were away in Chicago. It really helps! Stay tuned as we continue round #2!