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...

Just Another Fill

Here we are at week five of round two already! Can you believe it??? I am so glad that it is going by so quickly and that we haven't encountered any problems besides the stitches (which was so surprise) and keeping our eye on the expander that was bruised from surgery. I am really hoping it stays this way but we just never can predict what can show up.

Anyways, not much else to say except that is was just another fill today. Same routine, same bit of fear from Aiden when we numbed him up and the same small amount of crying when we did the expander with the port in his arm. I am so proud of him. He is one brave little guy.

The back expander, even though it is the smallest expander, is my most proud because we are now at 175cc after I got in another 30cc today. As long as things stay smooth, I am 99% positive that we will be over our 250 goal which is really exciting. The more saline we can get in to make his bubbles bigger, the better the result should be. I say should because there is no telling how the skin will stretch in certain areas once Dr. Bauer works his magic!

The other two are also doing well! Even though the upper chest expander is looking less purplish, I am not taking any chances so I only put in 40cc, making the total 230cc. The lower chest expander is the toughest one. It gets so tight so quickly but as Dr. Bauer reminded me, just because it is the biggest one doesn't mean that it will fill the best. Every expander is different, especially depending on location. So, I barely could get in 45cc but that is ok because we are still doing well with totals now at 310cc.

His bubbles are getting so big! Check them out for yourself!

Belly expander at 310cc, Back expander at 175cc

Upper chest at 230cc! Yes, he can and often does rest his chin on his bubble! 

Easy Peasy

Today was fill #4. It really has become part of our normal Thursday routine. I don't have a lot of anxiety before the fills like I used to and I certainly don't have the fear anymore. Don't get me wrong...I don't like doing it (who would?) but I have to put that aside and be strong for Aiden. The less nervous I am, the easier it is for us to help him through it.

This was by far the best Aiden has done this round. He still continues to not be a fan of putting the numbing cream on but thats because he knows what is about to come. However, as soon as we sit him in his seat for lunch, he is perfectly fine and the 45 minutes fly on by. He enjoyed a popsicle for his special treat today, which he thought was yummy! When it was time for the fill, he sat in Michael's lap and picked Little Einsteins to watch.

When I went to do the first bubble in his lower chest, he turned around to look at what I was doing but then quickly went back to the show. While I was trying to put the needle in, he shifted a little and since this was the slanted one, it was hard for me to tell if I was in there. So, I had to pull it out. Darn it! So I went to go get another needle and then cleaned the area again. Then just before I went to put the needle in, I saw that Michael had accidentally brushed his arm on the port. Oops! So, I cleaned the area one more time. Aiden did so well throughout all of our little mishaps with only saying a little no at the first poke. I was able to get in 55cc with totals now up to 265cc.

The next bubble in his back was a piece of cake. I was in and out like a pro, getting in 30cc again! This one is now at 145cc! The port in the arm is my least favorite one because Aiden seems to have the hardest time with that one and we really have to watch him so he doesn't try to pull out the needle while I am filling. However, much to my surprise, he didn't flinch once. He even watched the bubble fill up in between watching his show. This one is still looking a little purple so we are still taking it easy, so I stopped at 45cc and that one is now at 190cc. I couldn't be happier with these results because with seven more hopeful fills left, all three bubbles are a little over half way there already! I know I won't continue to get these kind of numbers as the bubbles tighten up but we are in a very good place right now.

It was an easy peasy fill and an easy peasy week which I am very happy about!

As always, I will leave you with the latest pictures of his bubbles!

Upper chest at 190cc, Lower chest at 265cc

Back at 145cc 

Actually got a smile this time just after the fill! 

Week Three

Here we are at Thursday again and boy what a week it has been. Every thing was going fine until Tuesday. When I went to do Aiden's normal routine of getting him dressed and moisturizing his bubbles, I noticed that his stitches were red and irritated. Not too bad but it brought me right back to last round when this happened. In fact, if we didn't have the third bubble, I wouldn't even be able to tell you which round was which based on looking at the photos. I knew I had to send a picture to let Dr. Bauer know so I went to get my handy dandy iPhone to snap a quick picture. Unfortunately, Aiden has been pretty emotional this time around now that he is older so even a simple picture gets him hot and bothered. Its fear and its over quickly but it doesn't make it easier to watch.

Then I waited for a response back from the doctor. Didn't take long for Susan, one of our fabulous nurses, to email me back. I was afraid to open it because I had a gut instinct that this time, they would say to take them out.  Last time, we did a few things to try to calm the stitches down before we did remove but now we have history that Aiden's skin doesn't do well with stitches. Well I guess I get an A+ for calling that one because her first sentence was "Time to get them out." It was an immediate burst of tears. After getting his leg stitches out last week and having it be an awful experience, I did NOT want to do this, not without being able to give Aiden something to help him cope with his fear and not with almost 50 stitches to take out.  If he wasn't having such an emotional time, it wouldn't have been so rough on me. There is only so much strength a mom can have and in that moment, I didn't have any.

After calming myself down, I called my new pediatrician office and left a message. I had previously discussed this happening since I knew it was a possibility and he said that he would either help me do it or find someone that could. I was looking for someone to be able to give him something, like Versed or Ativan to calm his nerves so that we could just get it done. I had also previously discussed this with our dermatologist but because she is outpatient only, she had to get approval from her office manager to be able to do this. The only problem was that she is only there on Tuesday's which was the day this all happened so I was counting on my pediatrician to come through. Sadly, I was very very wrong. Their office was extremely difficult and not understanding one bit saying that they needed notes from surgery and blah blah blah. I was so extremely disappointed. They also kept asking me to call Dr. Bauer's office for further instruction as if I had no idea what I was doing. Needless to say, I will be looking for a new pediatrician again. I moved on to working with our dermatologist but I didn't catch her in time so that wasn't looking good.

I was running out of options. I decided to ask my good friend, Christine, if she could email her doctor in Arizona and see if she knew anyone that could help me do this as I was still terrified to do this on my own. Dr. Price got back to her the next day after she was out of surgery and was going to help us out. So that was relief to hear BUT I also didn't know when we would hear back from her so I was also communicating with Dr. Bauer's office for advice. They were encouraging me to try this on our own mainly just because it was better to get them out sooner than later. This was going to be my last resort. By the end of the day Wednesday, we still had no solid plan and out of fear of waiting longer to have the stitches get worse, I decided that I had to take a shot at this myself. BIG DEEP BREATH. Technically it is not that hard to do but when you throw an emotional toddler into this, it is hard. So, I decided that we would try to do this once we gave him some Tylenol with codeine and after he fell asleep. So this is what we did last night.

It seemed like it took forever for him to fall asleep but he finally did and I got everything ready. First we numbed the incisions and waited a bit for that to kick in. The first incision I took out on his stomach actually went quite well. I knew it would be the easiest one. Then he started to wake up and realize that something wasn't quite right. So, I put him back to sleep and started again. The next one I did on his back definitely wasn't as easy but I got it done as fast I could without him fully waking up. By the time I went to do the third one, he had figured us out and although he was super tired, he fought going back to sleep. So I gave him a sucker hoping that would help and turned on a show for him to watch. After some flinching and crying, I was able to get all of that incision except for one knot. It took us almost 90 minutes to do just three of the five incisions so I decided this was enough for now. I was pleased though that we got that far and decided that we would try to get the last two incisions tonight. Despite the progress we made on our own, it still frustrates me that I even had to deal with this in the first place. Super disappointed in the lack of care or willingness to help with our doctors out here. We are simply spoiled by the amazing staff we have with Dr. Bauer and more offices should follow in their footsteps.

Knowing that we would attempt this again tonight, I told Michael that I would do the fill while he was gone at work today so that we wouldn't have to do all of this tonight when he got home. He wasn't crazy about missing it as he likes to be there to support Aiden but we both knew this was best considering that we don't know if we will get just as lucky as we did last night.

It is so amazing how the fills become routine. I feel like a pro now. I don't even need the cheat sheet anymore. Aiden did not do well getting the lidocaine on but after we got him settled, he enjoyed a nice lunch and the waiting period for him to become numb went by quickly. Once it was time for the fill, he sat in my mom's lap with a sucker and his show on the iPad and was ready to go. I did the lower left chest first and got in 50cc and he barely flinched. I thought I would have gotten more but its still great. Moved on to his back expander which was a piece of cake. Not a peep and 30cc was in and out. The arm one is my least favorite. I am not sure that we will ever have it "easy" with that one this round. He told me no this time when he saw the needle and that made me sad. When I put the needle in, it was difficult for me to tell if I was in the port so I decided that I would get another needle and start over just to be sure. I felt bad about that but it was the right thing to do. He told me no again but then it was funny because he noticed the tab of the needle was blue and said "BLUE." I guess he is easily distracted. I put 50cc in that one and was done with fill #3. Only 8 more to go. I am really happy to report that the back bubble is now only 10cc away from being half way to goal!

Upper expander now at 145cc Lower expander now at 210cc

Back expander at 115cc and you can also see the three areas where I took out stitches. They already look better!

Aiden just after a fill and a bath to wash off all the sticky sucker

The Cloud of Worry

Well, here we are again, back at a Thursday and time for another fill with Aiden. A fill, that earlier this week, I wasn't 100% positive that we would be able to do it as scheduled. Unfortunately, during expansion, there is a constant cloud of worry that hangs in the back of my mind to remind me that any little thing has the potential to turn into something bigger. It is one of the sucky parts of expansion but it completely worth it to make sure we get the best result possible.

Earlier this week, Aiden wasn't sleeping too well at night. This is not completely unusual for this to happen from time to time but I was still checking him to make sure nothing was wrong with expanders or his stitches. He did not have a fever or any other symptoms either. Until Tuesday. He woke up sneezing like crazy with a runny nose. No other symptoms so I thought it could possibly be just allergies. My mom and I both felt like he was a little warm feeling but no fever so that made me feel a little bit better that allergies could easily be the issue. 

Didn't have a lot of time to worry too much at that moment because I had to take him to see the Dermatologist and remove the stitches in his leg. UGH. Thinking about this was a huge distraction from worrying about his runny nose though. I dread stitch removal and especially with Aiden being older, I knew that this would be hard. On the bright side, I knew it shouldn't take long as it was only a few stitches. Aiden knew something was up the second I set him down on the chair. I set up the iPad and gave him a sucker, hoping that it would be enough of a distraction. Unfortunately, it would be a big lie to say that it did. Although it was a short process to take out the stitches, there was crying and probably the worst part for me was him asking for me to pick him up. Instead I had to hold him down. He was scared, simple as that and its not easy watching him go through so much fear BUT the one thing I can say, is that after it was over, he was 100% fine. He doesn't remember it now and he won't remember it later. With all that being said though, his leg looks FANTASTIC!!!!!!!!!!

After that was over,  it was back to worrying about the runny nose. It wasn't getting better but it wasn't getting worse. By night time, he sounded a little stuffed up but still no cough, no fever. As a precaution, I emailed Dr. Bauer just to keep him in the loop. Since it was still a few days from fill day, he told me to see how he was over the next few days and if it seemed to be cold symptoms, hold off on filling for a few days. UGH. I knew thats what he would say but all I could do was hope it didn't turn into a cold. 

Wednesday comes and he still is sneezing with a runny nose but it has improved so I am somewhat relieved. That cloud of worry tells me not to jump to any conclusions just yet. By night time, he seems a little stuffy again but no other symptoms. 

So here Thursday comes and he sleeps through the night and wakes up seeming ok. I go back and forth all morning whether or not we should do the fill today. Its that cloud of worry that has me second guessing what to do but after having a sneeze free morning, I decided to go for it. Aiden certainly is way more aware now that he is older. He didn't like the lidocaine going on one bit this time. I know it doesn't hurt. He just knows something up and I don't think the previous trip to the doctor helped one bit. A reason that I am so very glad we get to do this at home. He is so much more comfortable at home than in a doctors office. 

Much to my surprise, Aiden did a lot better than I thought he would after being afraid of the lidocaine cream. Two of the three bubbles went perfectly. I filled the lower chest expander first and was able to get 50cc making the total 160cc. Then I filled the back expander and got in 30cc making the total now 85cc. Then came time for the upper chest expander, the one where the port is in the arm. Michael had to hold down his arm so that I wouldn't contaminate the needle and also so that he wouldn't try to pull the needle out while expanding. He did cry the whole time and that was hard but I got the job done quickly and it was over. Its hard to know whether he cried because he wasn't numb or because he was scared. My guess is the latter though because he started crying before the needle ever got close to touching the port. All in all, I would say it was another successful fill. Check out his growing bubbles! 

Reading a book right after the fill 

Back at 85cc

Upper chest at 95cc and lower chest at 160cc

"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!

Back in the Swing of Things...

Since Aiden's last surgery in February to clear that infection, we have been busy bee's! We wanted to soak in as much as possible before we started this all over again. We kept ourselves busy with fun play dates with several friends, many trips to Disneyland, a few to the zoo, a trip to Michigan and last but not least, the Nevus Outreach Conference! We are so glad to have made it to our very first Conference because it was AMAZING!!! An experience, that only those who attend can understand. Thank you so much to all of you that donated to Nevus Outreach for Aiden's birthday party so that we could attend! It will be something we hope to attend for many more years to come and we hope that it will impact Aiden the same way it did for us.

The only thing that was a bummer about the conference was that we knew the end meant that it's time to get back in the swing of things with Aiden's surgical journey. Since we had such a long break, it almost felt like it was over but of course, it isn't. We had the pleasure of seeing Dr. Bauer at the conference and his wonderful staff, Mim, Susan, and Kristi. He said that Aiden had healed up well (phew) and that he would place 2-3 expanders this time. I asked if he thought that he would get the rest this time and he didn't seem to think so due to the sensitive nature of the arm. I wasn't shocked by this because he had told us this in the past and all we want for Aiden is the best result for his future. With Dr. Bauer, we have that so we don't question it.

So, here we sit, one week until surgery #4 on July 23rd. My emotions are so much stronger than they were going into round one. There is less anxiety, less stress and unfortunately, familiarity of what to expect. Of course, I still have some of those feelings but that is mainly because he is older and much more aware of his surroundings and that does make me sad BUT my little guy is tough, so I'll be strong for him.

This time will be a little different than usual because we will see an ENT doctor prior to having surgery done. Aiden has had four ear infections throughout his short little life and the last two were about a month apart so there is some concern that he will continue to get ear infections, especially when expanders are in. So, the ENT will examine him and hopefully put tubes in to help with this issue. They normally do tubes once they have had six ear infections but Aiden's case is different due to the surgeries. I know of a few others who had this done as well and it was worth it so I am hoping they get placed. If they do get placed, it will just be right before Dr. Bauer does his procedure.

Please keep Aiden in your thoughts and hope that the surgery and recovery is smooth. I will keep you posted as much as I can! We should be the first surgery at 7:30am, which is easier for us and easier on Aiden with the fasting but we will know for sure when the hospital calls us to confirm.

We still have cookbooks available for sale and we are reducing the price in hopes to sell what we have left to continue to help us cover the expenses of medical bills and traveling expenses to Chicago. The cookbooks are now $15! If you don't have a copy and want one, let me know or order directly from the blog. Or maybe you know someone that might want one or even someone who might be willing to help me sell some...please pass the word on if you do. I also have a few other fundraising ideas that we might do during Aiden's expansion so I will keep you informed in case you would like to participate! We continue to be so grateful for everyone that has helped so far, its been such a huge help!

Just Aiden enjoying summer!

Aiden's "FUN"draiser at Pump it Up

Back in January, Aiden and I went to Pump it Up for Rachel's first birthday party. She is the daughter to my very good friend, Shannon. When it came time to open the gifts, Shannon sat down and started to tear up. Well, in that moment, I just knew something was going on and that Aiden had everything to do with it. She had asked her guests to donate money for Aiden's surgeries instead of gifts for her daughter. I was very surprised as I had NO idea. I couldn't have been more grateful for the $400 they raised for Aiden. We have had nothing but wonderful support from our friends and family to help us get through this journey with Aiden.

One of the workers there decided to go to their manager and tell them about Aiden's story. They immediately wanted to help us out. They told me that they would host an event on a weeknight and only charge $10 per child. This would include unlimited use of both arena's, pizza, and drinks. I thought this would be such a fun way to fundraise for Aiden and help bring awareness to his rare skin condition.

I was all set and ready to pick a date sometime in February until I got the email from Dr. Bauer (literally two days later) telling me that he thought it would be best to excise the infection that we had been battling for months. What a blessing in disguise this opportunity was for us! With this unexpected surgery and our cookbooks slowing down in sales, we really need the extra support so this was THE perfect opportunity for us at this time.

After we got home from Chicago, I was finally able to pick a date! So, I am so excited to announce that on March 29th from 5:30-7:30pm, Pump it Up in Murrieta is having a "FUN"draiser for Aiden. Again it will ONLY COST $10 per child so if you have kids, please consider coming and be sure to tell your friends. Space is limited so PREPAID reservations are required. Please call 951-677-1933 today and reserve your spot!

If you have never been to Pump it Up, check them out on their website below.

Pump It Up

We will also have our cookbooks for sale at the event. If you are unable to attend and don't have a cookbook yet or want one for a gift, please let me know.

Thanks again for all the support everyone has shown thus far! And many thanks to SHANNON because we never would have had this opportunity at Pump it Up without you.

Surgery #3

We made it to Chicago on Sunday for surgery #3. I never would have thought that this surgery would be to remove an infection but here we are. As much as I hate surgery, I was relieved of this one. Three months of dressing changes for this mommy is ENOUGH, and I found it heartbreaking every time he would just sit there, put his hands up and watch me take care of the infection like it was routine.

Everything leading up to today's surgery was a little chaotic. Last night, I hadn't heard from the hospital and I thought that was strange so I decided to give them a call. Well, they were never going to call because we were not on the schedule. GULP. I urgently checked my email to make sure I didn't mess up but surgery was definitely supposed to be on the 21st. So I called Dr. Bauer, and he said the same thing, "he isn't on my schedule either, in fact I'm not even in the operating room tomorrow." Oh boy! Of course, Dr. Bauer assured me that this would happen sometime before I left but that he couldnt guarantee which day it would be on. He asked me to fast Aiden at 6am and then at 8:30, call Kristi, and see if the hospital has room for us around noon as he didn't have much going on tomorrow.

It was a little stressful at first but after talking to Dr. Bauer, I wasn't even worried. I knew it would work out. So, I woke Aiden up at 6 am and gave him a bottle and he went right back to sleep. Kristi called me around 8:15, letting me know that we were on the schedule for noon and to be at the hospital at 11. Bless her heart, she felt terrible about the mistake and I told her not to worry, we all make mistakes. Luckily, Aiden hasn't been a huge breakfast eater lately so fasting him was not all that bad. We finished getting ready and headed to the hospital at 10:30.

Of course when we get to hospital, we weren't on the list! I just laughed. I figured that would be the case so they just made a quick phone call upstairs to make sure we were supposed to be there. Aiden wasn't too sure where he was but he didn't seem to care all that much. Instead he was waving and saying hi to everyone. It wasn't until we put his gown on and the nurse came in that he was a little confused. He still didn't cry though which was good since last time he did. He walked around the room with his little cape on and was cracking my mom and I up. Dr. Bauer came in shortly before taking him back to surgery and told us that this should be a simple procedure and that clearing this up will be easier in the future.

This time we decided to give him the versed to make it a little easier when they take him from us. It was hilarious! He was really relaxed and when we said goodbye, he slowly waved and seemed fine! It's odd to say this but I'm so comfortable watching him go through those surgery doors. He is in really good hands and everyone is so sweet and nice. My absoulte favorite recovery nurse, Mary, is so awesome! She came out and gave me a hug and talked to me about what we were doing. So nice that she remembers us as she must see so many people everyday.

Dr. Bauer said surgery would take about an hour so my mom and I headed to grab some lunch in the cafeteria. It ended up being a little over an hour but it did go by fast. He said that everything went well! We headed back to recovery to see Aiden and he was asleep. He woke up a bit and cried but was shortly back to sleep and soon enough we were moved to our private room. He sparked up fast and started drinking some pedialyte. Shortly after that he had some toddler formula and then some food and some more food. This was unusual, as he normally doesn't want to eat so I knew right away this was going to be an easy recovery. We only stayed a few hours and headed back to the hotel.

He is doing great and I'm glad to have this over with. We will see Mim and Susan on Thursday for a dressing change and then in a couple of weeks, remove the stitches. Thanks for all the support I received today! It's always so nice to have so many people carrying about my sweet little boy.

Rolling with the Punches

Well, I have some news. The last time I updated the blog, we were still dealing with the infection on his back. Guess what?? We are STILL dealing with this. I wish that wasn't the case but it is what it is.

I sent my weekly email over to Dr. Bauer earlier this week to show him the progress. I was expecting the same response of sticking with the routine that I have been doing. I thought wrong. He said that although it is looking better, it is taking unusually long at this point to heal and he thinks it would be best to excise the infection and close the wound. He understands that it isn't easy to come out to Chicago on such short notice but he feels that taking care of this now is better so that we have healthy tissue when we start the next round of  expansion. It makes sense as we certainly don't want to go through another infection again but this extra surgery was unexpected. We are now looking at definitely five surgeries plus whatever reconstruction surgeries he will need after the nevus is removed.

My trust in Dr. Bauer is so high that we are just rolling with the punches. It wasn't a case of "emergency" to fly out there right away so Dr. Bauer told his assistant to fit us in the next available date which happens to be February 21st. Due to the short notice, Michael will be unable to come with me so my mom will be coming along.

The surgery will not be that big of a deal as there will be little to no care afterwards beside the activity restrictions, which will be a little hard. Even though it sucks to put my son through another surgery, I will be glad to have this infection over with and be healed. Then we can really enjoy the next five months before round two begins. And I can finally write that post that round one is OVER.

I am happy to report that we are lucky enough to be able to see our really good friends from Canada that we met on our first trip to Chicago!!! This is definitely a bonus!

Thank you all for continuing to support Aiden. I will keep you guys posted on how his surgery goes and be sure to stay tuned as we have an exciting fundraiser coming up for Aiden! Details to come soon!

We still have cookbooks available for sale if anyone wants a copy to help out with our surgery/travel expenses! Order on the blog today or we can meet up somewhere if you live close! Again, we thank all of you that have contributed to helping Aiden! It has helped this process become a lot less stressful and we are touched by the love you have shown!

My handsome little guy! 

The Power of a Blog

Before having Aiden, I was never really in to reading blogs and I most certainly would have never saw myself writing one of my own. With that being said, I actually find having a blog to be refreshing for my situation and I have come to enjoy it. I still do not spend hours reading blogs but I have come to find several that I enjoy reading and some that I feel empowered to pass on to those that read my blog.

Yesterday, a friend of mine from my support group posted a blog about a baby who was born in her town with a rare skin condition called Harlequin Ichthyosis. Of course, I am immediately hooked and interested to learn about this. Well, as soon as I start reading, I realize that I am completely unprepared to read this story. This story of this sweet baby girl named Brenna is heartbreaking to say the least. She is close to six weeks old and has endured things in her life that are so hard to wrap my head around. I found her story so compelling that I read every single post in pretty much one sitting. It's hard to explain the emotions that poured through me while reading this so I encourage you to check out the story yourself. Just read the very first post that this mother wrote about her sweet baby girl and trust me, you will want to read the rest. I do recommend bringing out your kleenex though because it is a tough read but inspiring and hopeful at the same time.

Please feel free to share her story with your friends and family. Just like with Aiden's condition, the more people who know about Brenna and her condition, the better off all of us will be.

Here is the link...

Blessed by Brenna

So bummed out!

I have been meaning to update the blog about Aiden's healing process but the holiday season got the best of me and I just didn't make the time for it. Let me catch you up to speed on how he has been doing. I wish I could tell you that everything has been great and that round one is officially over from dressing changes and ace wrap bandages. Sadly, I can't. Shortly after we removed the stitches, (a few weeks after surgery) I noticed that his back and side incision was looking a little red and irritated. We were supposed to be dropping the ace wrap in a few days but Dr. Bauer told us to keep with it a little while longer and keep the incision nice and clean. We followed his instructions despite Aiden's annoyance with the the bandage.

A few days later, I noticed a little bit of drainage coming from these irritated areas. Dr. Bauer suggested that we do some wet/dry dressings to help clean this up. So we started the dressings. Then I noticed that the little bit of drainage was increasing and turning into pus. We definitely had an infection on our hands and Aiden was put on an antibiotic. After five days of that, the infection got even worse. I don't even know how to describe it but there were these 3D looking bubbles of pus that looked like they could burst at any moment. We switched antibiotics at that point to something stronger in hopes that this would turn around. It was just awful but Dr. Bauer and his staff have been nothing but awesome in helping us get through this. I am so thankful for him!

Christmas Eve came around and it still looked bad. At this point, Aiden had been on antibiotics for a little over two weeks so I was hoping to be able to start the new year with a fresh start. Dr. Bauer told us to increase the dressing changes and make sure we are getting the best contact we can so that these areas can get clean and be healed. Unfortunately, the new year came and here we are...STILL doing dressing changes and ace wrap. On the plus side, it does seem to be coming around, just slowly.

Yesterday, I got an email that I hoped wasn't going to come. It was from Dr. Bauer letting me know that Aiden can't have surgery in March. I had booked this surgery before surgery #2 had ever happened, not knowing we would be dealing with an infection of course. He let me know that we need four months of complete healing time in between surgery and that even though Aiden is starting to come around, we would be at significant risk to put expanders in anytime soon. I know its for the best but I am so bummed. We were all ready for the Chicago winter weather and we were going to be with a lot of our nevus buddies on that trip. At least everything we booked can be cancelled and put on hold until our next surgery. We are not too sure when that will be yet since we aren't completely healed today. Dr. Bauer said probably early summer. It will be more difficult with Aiden being older (and bigger) but we will fight the battle when the time comes.

The plus side is that after we are healed up, we can focus on everything but surgery, dressing changes and quarantine for awhile. I will be sure to keep you guys posted on when our next surgery will be and how Aiden is doing with the healing process.

Hope everyone is having a great year so far. Even though, ours hasn't started out the way we had hoped, good things are to come this year!

We still have cookbooks available for sale if you are interested or know anyone who would like a copy! You can order on the blog or contact me! Even though, we still have lots of time left before the school year is over, these cookbooks would make for the perfect teacher gift!!!!!!