"I DID IT"

"I did it" were the final words from Aiden after our second fill today! I am so proud of him. Before we started the fill, I asked him if he wanted to get his bubbles filled and he surprisingly said yes! Of course, followed by a quick no! I can tell he gets a little nervous but now that he understands that there is no pain involved, he does really good! The shoulder one is still slightly bruised so I only put in 20cc so he now has 60cc in there. The back one is a big one so I was able to put in 75cc which now is holding 205cc!

Nothing else to report here except that everything is going well! Check out his new bubbles!!!

Back at 205cc!

Shoulder at 60cc

Feels Good To Be Free

We have made it to Day Ten Post Op which is always an exciting day for a lot of reasons! The most exciting is that this means that Aiden got to have his drains and bandages removed. And boy oh boy it feels good to be free from that. This also means that it becomes time for a bath...FINALLY. That is definitely one of my least favorite things from this process because Aiden stinks for ten days of nothing but hospital smell and bandages!

Day Ten also marks the day that we normally get to do the very first fill. Since Aiden has some slight bruising on the upper shoulder one, Dr. Bauer had warned us that we may not be able to fill at the ten days. Luckily, we weren't told that we couldn't start, so we decided to go forward but just slowly. I took Aiden's drains out in the morning and then bandaged him back up to catch the excess fluid that was coming out. It was crazy this time how much fluid we had draining this time!!! Aiden did great! I talked about filling his bubbles throughout the day because I didn't want him to be ambushed when it actually was time. He is at that age where he can be very sensitive about what is happening to him.

I decided that dinner time would be the perfect time to numb him up with the lidocaine cream. He knew something was up as soon as I brought the press n seal out with the cream and started to cry a little that he didn't want me to do it. It was definitely more difficult than in the past to keep him sitting in the high chair after he was finished with dinner but we managed ok. He enjoyed some carrot cake and then a sucker to help pass the time while watching a show on the good ol' iPad. The suckers used to help slow it down but now he just knows that he can bite it off!

Soon enough, it was time to start the bubbles. He immediately started to whine and cry a little but he was excited to take a bath with this new submarine toy that he got in Chicago, so this helped give him some motivation to get this over with. My mom held him in her lap while I prepped the area. He said "owie" before I even stuck the needle in so I thought that this might not go so well. BUT much to my surprise, he did really well. Whimpered for a small portion but then once the needle was in, he realized that it didn't hurt and he went about his way, looking at other things. I put 50cc into the back expander so that one is now at 130cc! It already looks so big to me! Then I put 15cc into the shoulder one just to keep is really safe so that one is now up to 40cc. That one is already so noticeable since it sticks right out of his shirt so it will be interesting to see it grow over these next few weeks!

I am beyond happy that it went so well. Hopefully the other fills go just as smooth. I think giving him a motivation really helped!! Thanks again for everyone who reaches out to us during this time. It really does help. Stay tuned for more updates and check out his growing bubbles...

Upper Shoulder at 40cc

Back at 130cc

Surgery Six Under our Belt

We have been home for a few days nows from the Windy City and Aiden is doing great. You would never know that he just had surgery last week on August 15th,  if it wasn't for the bandage you can see coming out of his shirt. It's always nice to see him bounce back to normal but it's also a little difficult when he should be taking it easy for a couple of weeks. Try telling that to an almost three year old boy who feels great! Ha!

The one thing that I can say about these surgeries is that it never gets easier. I may be stronger and can fight back the tears but nothing about it, is easy. Each time we have had surgery for Aiden, it has been a different experience yet similar. Surgery number six was different in the sense that Aiden is much more aware and is very vocal about his emotions or what may be hurting/bothering him.

The morning of surgery,  I couldn't  believe that we were heading to the hospital for surgery for the second time on my birthday. Definitely not a fun place to be on your birthday but it was worth it so that I could attend my ten year high school reunion the weekend before we left. The only good thing was that at least this time on my birthday, we knew what to expect, we knew that he would be ok after a few days.

Aiden was third on the list, so we had to be at the hospital at 10am. We let Aiden stay up late so that he could sleep in and luckily that was a success. He woke up about 30 minutes before we had to leave for the hospital so there really was no time for him to ask for anything to eat. Which to be honest, he doesn't really care to eat anyways so I wasn't worried about it! Aiden was totally fine walking into the hospital with his superhero cape on but it was when we hit the nurses station that he said "I want to go back go the car."   Ugh! That hit me so hard that I'm not sure how tears didn't come but I refuseto let him see any weakness that I may be feeling. He was pretty attached to me while we waited for surgery time so I just sat with him and tried the best to distract. He cried and said "help me" while they took his temperature and blood pressure. Another moment that I felt tears welling up in my eyes. Then came time for the Versed, the medicine that makes them become a little loopy so they aren't so upset when they head back to surgery. Well, that didn't go so well and he probably spit half of it out. It still did its job for the most part though so that was good. Dr. Bauer came in shortly after the versed was given go talk the plan over with us. He said he would place two expanders, one in his back and one most likely in the shoulder area. I was surprised to hear that he would expand the back again but it made sense for him to also fix some of the scar tissue that needs some love.

Aiden showing Dr. Bauer his new toy!

Definitely a mommy's boy this trip!

 Shortly after we saw Dr. Bauer, they came to take him back for surgery and although he wasn't screaming, he was still reaching out for me and saying "help me." So hard go hear but the people who work at Highland Park hospital are amazing and they do everything they can to make them feel better about leaving mom and dad. The sad part for me is that this was the first time that he didn't wear his cape back to surgery. He didn't like it and we weren't going to force him. So then we went off to wait for surgery to be done. It seemed like it wasn't that long before Dr. Bauer came out in the waiting room to speak to us. He told us that everything went well and that he placed a 250cc expander with 25cc in already in his upper shoulder and a 750cc expander with 80cc in his back. I was surprised that he put in such a large expander in his back but the skin will be great!!!

Aiden was sleeping when we went back to see him which is good to let him rest but I couldn't wait go hold him. Eventually he woke up and wasn't that happy and definitely was uncomfortable. Took some time to convince him to eat a Popsicle but then we were on his third one! He eventually also ate some  Ritz cheese crackers which surprised me, because go usually takes a really long time to eat. Pain management was tough as usual for us and there was a lot of "owie" "I hurt" and tears while being moved but we were able to get a routine down that made it a little better. Definitely used a lot of shows on the iPad to distract. We wanted to leave the hospital so badly but he hasn't gone to the
bathroom yet and we had to make sure that his pain management was better. Luckily around six at night, he accomplished these things and off we went! Picked up some dinner for Michael and I on the way back and then my parents, Aunt Kate, and cousin Mallory met us at our hotel room. My grandma was there too but they had a long day of driving in from Michigan and she was wiped! Since it was my birthday and my dads too, they got an ice cream cake for us to celebrate. It was yummy! Aiden was doing better back at the hotel but was still bothered by too much movement so he stayed on the couch for a long time watching movies!

The night went ok but the morning was rough as Aiden was pretty sore. His arm was really bothering him. He has a port to one of the expander's in there so it was understandable why he was struggling so much. We headed off to see Mim for a dressing change. Everything looked good, minus a little bruising but Dr. Bauer had already warned us that could happen. The day was a little bit tough on Aiden but my the end of the night, he was coming back to himself and even wanting to walk around a little which was awesome.

Not a happy camper for 1st dressing change

That lump under his face is the upper shoulder expander

Back expander. This one is going to be huge!!!!

We spent the next few days doing some tourist things around the city to keep Aiden distracted. One of the new things we tried this time was the Museum of Science and Industry. If you haven't been there and are ever in Chicago, you should check it out. It was pretty cool. We even decided to become members so we can go back in November and the membership also gets us in to several places close to us back home as well!

One of the most amazing things while in Chicago is always meeting other nevus families. This trip, we were able to meet three. The Bellar family actually had surgery the same day as us but we didn't know that. They have a cute little boy named Branson who also got skin expander's placed for round two.  The Lynd Family was from Canada and their nevus owner is a sweet baby girl named Georgia. This was their first surgery so I was really glad to meet them and help guide them along for what to expect. Last but not least we met The Nolasco Family all the way from the Philippines and they have sweet baby Wade who is on round two of expansion. It was really great meeting them!!

On our last day in Chicago, we saw Mim one last time and I was really proud of how well Aiden did. He did cry for a minute but then was so sweet with her, telling her that she could bandage him back up. Mim has the best heart and we absolutely love her. She even picked up some foam buses that she saw at Target because we were telling her how Aiden was crying for a bus during surgery day, something that we didn't have for him. Susan was on vacation so we missed her but I really don't know how we would manage without these wonderful nurses. I know we would get through it but having them care so MUCH is way beyond any expectation we ever had going into this.

So now, the focus has shifted to filling those bubbles and keeping him healthy. We still have drains in and bandages but just for a few more days. Can't wait for bath time!!! Thank you to everyone who has reached out to us during this time! Stay tuned....

Chicago Here We Come

Hello Guys!!!

It has been way too long since I have updated the blog and with surgery #6 right around the corner, I thought this would be a great time to catch you up with everything that has been going on in our life! In some ways, it feels like we just left Chicago from surgery but in many other ways, it seems like such a long time ago! We had really hoped to have had this next round started and over with by now but its just not the path we were supposed to be on and thats OK. It really was the best thing for Aiden and that has always been top priority for us. Let me explain why we had such a long break....

Round two brought us some really great results but we knew that since we were starting to embark on the arm, that recovery might not be so easy with a very active two year old. Sure enough, we were right. Dr. Bauer and his team were not surprised at all when his armpit started causing a little bit of trouble. We were able to keep it from being infected but the area had still opened up so it was back to wet to dry dressings to help close up the wound. I absolutely HATE wet to dry dressings but the reality is that they do the trick. The wound closed up much faster than the issues we had with round one because it never got infected so that was great news. I thought for sure we would still be ok to move forward with the next round in February. Well, I was wrong and disappointed. Dr. Bauer said that because the arm was a sensitive area, the skin needed to have more time to heal. He said maybe we could start towards the end of April but he would have to see after a few months. Dr. Bauer had also thrown in that if we wanted to, it would be totally ok to even wait until summer.

After some thinking about it, we decided that it would probably be best to give his skin some time to heal AND with Dr. Bauer on an almost five week vacation in May, we just couldn't chance starting earlier and not having our doctor perform surgery if something went wrong. So, it became finalized that we would wait until the end of summer to start round three so that Aiden could enjoy his summer swimming and not worrying about stitches, keeping him healthy and anything else that had to do with surgery.

In between all this time, we have been really busy and its been a lot of fun. My grandma was with us for a bulk of this time off and that was so wonderful being able to spend that time with her. Aiden really grew fond of her too and I am so glad that he has a great grandparent in his life. We also had lots of other visitors come to see us too! My Aunt Pat flew out with my grandma and stayed for a week. Then my Aunt Paula and my cousins, Sydney and Zach, came out for a week all the way from Vermont! Next up was my Aunt MaryAnne and my cousin Sam from Portland. Then came my Aunt Karen to take my grandma home but my grandma ended up staying here for a few more months which was totally fine by us! While my Aunt Karen was here, we took her to Catalina which was so beautiful. Aiden had a blast looking at the fish on the submarine ride! Then last but not least, my Aunt Sue came for a weekend to take my grandma back home in the beginning of June. It was a sad day. We miss her so much and can't wait for her to come back here!

 We also had our 3rd Annual Nevus Pool Party and got to meet two new families!! Its such a blast to get together with the nevus families who live around here and be able to be around people who know just what we are going through.

Our last major thing thing we did on our break was take our annual trip to Michigan to visit family with my mom and Aiden. My cousin had just had her fourth baby so it was even more exciting to be able to meet her while we were there. Eden was so precious and beautiful! We also got to meet Baby Molly, who had been born shortly before Eden! Aiden had such a blast hanging with all the family and he was so excited to see my grandma again!

So now after all that fun, here we are, less than two weeks from surgery #6 on August 15th. It is kinda weird how we have ended up in August for the start of all three rounds now. And this will be the second time that it will land on my birthday! Sigh! The difference this time though is that my parents are coming with us for the most of the trip so we have lots of support with us. We also will be seeing my grandma and Aunt Kate with her daughter Mallory so that will be fun!

I'm not exactly sure what Dr. Bauer's plans are yet but we definitely should expect two expanders somewhere! So ready to get this started and hopefully have a great round ahead of us. Please keep Aiden in your thoughts as we embark on this journey once again. We also still have cookbooks left that we need to sell so if anyone wants one or knows someone that might, please let me know! You can order one directly on the blog or if you live near me, I can get one to you! We are so thankful for all the donations and cookbooks we have sold so far. We couldn't have made this go so smoothly without your help so thank you!

FINALLY...surgery results!

I finally have some time to catch up on updating everyone on Aiden's last surgery and where we stand now on the nevus removal journey. Sorry it has taken this long but we really have been nonstop busy since we got home from Chicago!

After five trips to Chicago, we are definitely considered experts which is not something I am proud to admit but its the truth. We hit a record this time for getting out of the airport and at the hotel. Even though we are only there for a short period of time, Chicago does feel like our "home" away from home.

Since our surgery was squeezed into Dr. Bauer's surgery schedule, we had to have surgery on a clinic day, meaning that we would be the only surgery of the day but that it would have to be in the afternoon. UGH. We got confirmation the night before surgery that Aiden was scheduled for 2:00pm. It  was going to be a long day and most likely we were going to have to stay overnight in the hospital but we would manage.

Lucky for us, Aiden slept in until almost 9am so that definitely helped. We spent the rest of the morning at the local mall and Aiden had a blast riding in this little fire truck in the play area. The time went by quickly and there we were again...at Highland Park Hospital. Aiden definitely knew something was up and did not want the nurses coming in and taking his vitals but we managed. Our surgery time came and we were still not taken back. The nurse had said that Dr. Bauer had gotten caught up in the office but was on his way. Shortly after that, we saw Dr. Bauer stroll right by and knew it wouldn't be long before the nurse came to take us back. By this point, I was so starving so I was really feeling for Aiden but he actually seemed to be handling it just fine. Such a little trooper!

I LOVE that we can still get smiles out of him, even at the hospital! 

When they came to take Aiden back to the OR, he was not happy. I wasn't expecting this for one second, especially since he was given the Versed. I have not cried since the first surgery but I felt the tears coming again. It is so incredibly difficult to leave him but when he cries, my heart just breaks. I was able to hold back the tears until they walked through the double doors to the OR as I refuse to let him see my weakness. As hard as it is, there are two constant comforts that come immediately...1. he is  in the best hands and 2. he won't remember.

Michael and I finally grabbed a bite to eat in the cafeteria and then proceeded back to the waiting room. There comes such relief with expander removal but it makes the waiting go by that much slower as we anticipate Dr. Bauer coming out with the results. It was about 5pm when Dr. Bauer came into the waiting room. He told us that things went well and that basically the arm and shoulder was left. It was pretty exciting news. He also said that he was a little concerned about some rough scarring that may come around the shoulder area but that it will all work out in the end. It made me a little nervous to see the results but the most important thing about seeing Dr. Bauer is taking care of our little superhero so we put that behind us. Shortly after seeing Dr. Bauer, we were called to go to recovery. When we walked in, I could hear his cry but it wasn't anything like last time so I was hoping this was a good sign.   Since we had such a late surgery, we knew we would be staying the night which is probably harder than being at the hotel but we were left at little to no option, especially since we struggle to get him to eat or drink for a long time after surgery. There was lot of crying the first few hours but we managed to get by and finally got him on a pain med schedule that seemed to at least keep him sleeping. He was really irritated that his arm was held down in the ace wrap but under no circumstance did Dr. Bauer want him moving his arm so that was our only option. It was definitely another struggle to eat or drink again...he even turned down a popsicle! Finally around 12:30am, we got him to drink maybe a few ounces of juice but it was a start. After a long night, we were able to get him to eat some baby food and drink some orange juice in the morning and get discharged.

Watching the iPad after surgery. 

We certainly didn't get much sleep but we are so ready to leave this place! 

 From the hospital, we headed straight to Dr. Bauer's office for the reveal. For the first time ever, we actually got to see Dr. Bauer at his office. He normally is in surgery when we come but it was another clinic day so he was there! When we pulled off the dressing, he looked relieved so I was instantly relieved. He said that the area he thought might be an issue, actually looks great! He also said that as long as Aiden isn't moving his arm too much, we could figure out something other than placing his arm in the wrap. Thank goodness because that was really bothering him and he had no interest in moving his arm. His armpit area was extremely tender so it was understandable that he wouldn't want to move it. As exciting as the reveal is, I have to admit that the first reaction for me is always "GULP." The scars are not easy to look at but I know with time they will heal and not be that noticeable in time. After that initial reaction, it really is amazing to see the results Dr. Bauer was able to achieve given that we were pushed up!

Take a look at where this journey has taken us....

Before any surgery

After round one

Back before surgery 

Back after round one!

After ROUND TWO!!!!!!!!

After ROUND TWO!!!! Nevus is gone up until the crease of his armpit.

We are really pleased with the results. One more round of expansion and then some revision surgeries and eventually nipple reconstruction and this nevus removal journey will be over!

The Last Fill

Today was the last fill of round two. It was actually bittersweet. I wish we could have four more fills but I am also glad that we don't have to worry about "fill" day until next time.

Aiden did fantastic today. I wasn't expecting him to because he was less than thrilled to fill up his bubbles. He was, however, thrilled at getting a sucker, especially since it was one with a little lighting mcqueen toy at the top. To say this kid is obsessed with cars is an understatement. He even watched this new little show we found on Netflix that is all about cars.

I did experience a mishap today and actually it made me laugh. When I went to do the first bubble, everything was going fine. The needle was in, I could feel the port and the saline seemed to be going in. Well, out of nowhere the syringe comes flying off the needle and squirts Michael right in the face. We were both silent for a second but moved on to get new supplies since those were now not sanitized.  I have never had that happen before and the only thing I can think of it that I didn't have the syringe completely attached to the needle and it just came loose. The best part was Aiden didn't even flinch and didn't care that I had to poke him again. If that would have happened last time, I would have freaked out but it was no big deal and no reason to panic. So, instead, we laughed it off.

All of the other bubbles went perfect. No tears and no flinching one bit. Aiden even looked at the needle in his arm and clapped and said "Blue" because the butterfly part of the needle is that color. We ended the last fill with a high five and that couldn't have made me any happier. I am no medical professional but I can easily do this and actually find it easier in the comfort of our own home.

I did not put a whole lot in today but I am pleased with the numbers. He now has 290 in the upper chest, 360 in the lower chest and 220 in the back. Considering we are moving up surgery and missed a week, we are not that far off from the goals of 350, 500 and 250. I know this is going to be great results! I am relieved that we are going early so that we don't encounter any more issues as we are starting to see some drainage again from the incisions.

Take a look at what the final fill brought us to....

Upper chest at 290cc

Back at 220cc

Lower chest at 360cc and quite the view of all three! 

We will head to Chicago on Sunday and prepare for surgery on the 23rd!

The Year of Changing Dates....

There have been a lot of unexpected things happen to our little family in 2012 so I shouldn't be surprised by my news that I have to share but somehow I still am...just a little. So, here I am to report that our surgery date of November 12th to remove Aiden's bubbles has been moved to October 23rd. You are probably just as surprised as I was since everything has been going so well. So, let me catch you up to speed. 

A few days after we did fill #5, I noticed some kind of fluid that was leaking out from his upper chest incison. It wasn't a whole lot but because it was coming from the expander that was bruised from surgery, I was slightly concerned that we were heading into a problem. I emailed Dr. Bauer a picture and he said that we would need to watch it. Then a few days later, the lower chest incision also had a spot that was leaking out fluid so I emailed Dr. Bauer again. Keep in mind that the expanders looked good still and it didn't seem like the fluid was increasing. So in my mind, I was thinking that Dr. Bauer would put him on an antibiotic or something to keep the expanders healthy. Well I thought wrong! He said that he thought we should move up surgery. WHAT???????? I didn't see that one coming for one second since we weren't battling a huge complication with a massive infection. And not to mention that we went very quickly from "we need to watch it" to "lets move up surgery." 

He further explained that he didn't want something bad to develop out of this and then have to lose the good skin that we already have so far. He also said that he had a couple of meetings this month where he would be out of town and he didn't want an emergency to occur and then not have him be there to do the surgery. I most certainly didn't want any of those things to happen so we agreed that it was best to move up surgery. 

Was I horribly upset by this news? Not really because Dr. Bauer knows best and I know that the results will be amazing. I would hate to have something happen and not nearly get the results we could have if we left the surgery the same. Was I disappointed? Absolutely! We were doing so well and his bubbles were on track to go over our goals on at least two of the bubbles so it is hard to think about where we could have gotten. I have learned through my own experiences and my friends experiences, that we can not think about the "what if's". With expansion, we don't always know what will happen so we learn to roll with the punches. 

The one thing that made me nervous was when Dr. Bauer was going to be able to schedule us in for surgery. We had so many plans for October with the major thing being a Birthday Bash with two of his little buddies who have birthdays very close to each other. The first date that Kristi gave me (Dr. Bauer's wonderful assistant) was October 8th which would have required us to leave in three days. Although we fly southwest and are able to easily change our flight, it would have cost us a lot of money to change it with such short notice so that wasn't really an option for us and since it wasn't an emergency, Dr. Bauer agreed that it would have been too difficult to get there. So, we went with the next available date which was October 23rd. Of course this date had to directly affect the party and I felt horrible about it but it was best for Aiden and that is our number one priority. Luckily, we were able to move the birthday party up one week and everything worked out. It still sucks that we have to go through this and I have been really tired of switching dates around but 2013 will be a new year and hopefully with it will come better luck with our surgery dates. 

After we had the new date scheduled. I asked Dr. Bauer how we should proceed with the fills and he told us to wait a few days and then let him know how the incisions look. Luckily, after a few days, the fluid seemed to stop leaking out and the incisions were not that irritated so he said we could proceed conservatively. If anything else was to happen with the incisions then he told us to stop. I was happy to be able to do a fill but also nervous because I don't want anything else to happen with them. So I waited a few more days before finally doing one. 

I am so happy to report that Aiden was awesome during this fill. I wish I would have thought to video tape it. He did not flinch or cry one time and that is a huge reassurance to me that doing these fills aren't painful for him but that he is just scared. He was such a big boy that he even watched me fill up his bubbles and helped me check his skin to see if we could fill them up some more. The little car toy that we gave him also helped a lot! He made his beep beep noises along the way and it was over and done with so quickly that I couldn't believe it. I can't wait to tell him one day what a brave little boy he is. It makes me cry just thinking about. He truly is my little superhero. 

With caution on my mind, I filled 20cc in his back expander, and 30cc in his two front ones. Our totals are now 195cc in back, 340cc in lower chest and 260cc in upper chest. We actually do have some great numbers and are pretty close to our goals so that I am really happy about. I really hope to get in one more fill next week! And then off to the Windy city we go after a fun Halloween Birthday Bash that is going to be blast! I can't wait to see the results from this round and share them with you all! 

Here are his latest bubbles...