Leaky Drain & Teaching Session

Everything went pretty smoothly with Aiden's surgery but we did have one very minor thing occur...a leaky drain. It happened about six days after surgery. When Michael and I had gone to do a dressing change, I noticed that there was a little area that looked like it had been bleeding. I didn't think much of it at first as it was a very small area. Then I started noticing that one of the drain tubes wasn't filling up very much. I also didn't think too much of this because that side had always been less than the other one so I thought maybe it was done draining.

Well, the next day, I had to drive Michael to the airport. We had planned on doing the dressing change prior to him leaving but it just didn't work out. When we got back to the hotel, I noticed that the side of his pajamas was a little wet. So, I took a look at the dressing and he was SOAKED in fluid. I didn't panic because some of the other moms had told me that this had happened to them, so I emailed Dr. Bauer to see what he would advise me to do.

In the meantime, I had to come up with a different way to do the dressing so that it didn't keep leaking through clothes. Well, Aiden wasn't cooperating very well so I was very happy that my good friend, Nadia, was still at the hotel to help me out. She was a great distraction for Aiden and I was able to concoct a better solution until I heard word from the doctor.

Dr. Bauer emailed me back within a few hours (yes, he is that awesome to email back on the weekends) and told me that as long as it is draining then it really doesn't matter where its draining. To be honest, I wasn't 100% loving this answer because I was all by myself for another full day and it was difficult to change the dressing on my own. Normally, I would only have to change the dressing once but because it was leaking so much fluid out, I had to do it more frequently.

So the next morning, I decided to call Dr. Bauer's nurse, Mim, to see what she would say. The fluid was going down at this point so she said I could either come in or wait until Thursday when I was scheduled to have the lesson on expansion. I told her that I needed to come in anyways because I was running out of supplies due to changing it so often. So she told me to come on in. I headed over in the afternoon and had the one leaking drain pulled. Aiden and I also got to meet Susan, Dr. Bauer's other nurse, who is just as fabulous as Mim is. Aiden loved both of them too! I was much happier!

Here is what the drains looked like. The one closer to his back is the one that got pulled early.

A few days after the drain incident, Aiden, my mom and I were back at Dr. Bauer's office. This time was to learn how to do the expansion. I had been told that the nurse would do one and that I would do the other one. This caused me to have a lot of anxiety that morning. I felt sick to my stomach as I drove over there...I just didn't want to do this but I knew I had to.

There was no turning back now so I tried to not focus on it. I remember looking at my mom with this complete look of fear and wishing we were elsewhere. However, I will tell you that I had prepared myself for something much worse. Once Susan started showing me the materials, I felt a little bit better. I had envisioned this gigantic needle for some reason and I HATE needles but after I saw it, I thought "I can do this...maybe."

We had put on the lidocaine for numbing before we left the hotel, so Aiden was all set to go. First, you get all your supplies ready to go and make sure everything is clean. Then you take the needle (which is attached to a syringe filled with saline) and insert into the center of the port. The port is located under the skin in an area close to the location of the expander. So, Aiden has one in his upper chest and another one down by the top of his diaper. Susan was going to have me fill the back one but then decided that it may be easier for me to try the chest area because she felt that the port was a better example for a first time learner. I was a little uneasy about this because I knew that Aiden would be looking right at me while I stuck this needle in but I needed to get used to that at some point anyways. Susan reassured me that I would be fine.

Susan went first and Aiden cried for a bit when the needle went it. She said that it was probably because the port was a little bruised and sore and not because he wasn't numb. I felt a huge amount of relief after watching her do it. She had a good way of teaching me with her calm attitude. She was able to get in 40cc. When it was my turn, I took a deep breath and in I went. It took less than a second to be in the port and within a few minutes, I also had 40cc in. Susan congratulated me on what a great job I did. That was a even bigger amount of relief lifted from me because I really didn't think I was going to do good at all. She allowed me to go home with a little bit of confidence to be able to accomplish this 11 more times at home. Hopefully that will be the case!

The belly expander now has 115cc in and the back expander has 130cc! Check out his little bubbles!

White blob is the numbing cream!

Back expander with 130cc

Belly expander with 115cc

Susan pulling the other drain out! 

Aiden with Mim

Finally a bath! 

Now, every week (as long as there are no issues) we will fill the expanders and watch them grow. Thanks everyone for following along and supporting us along the way!

And...I got word today that my next shipment of cookbooks is shipping TOMORROW!!!!!!!!!!! So exciting! If you still need a copy or are interested in helping me sell these next 400 copies, let me know! They make great gifts and with Christmas not too far behind us, it will be perfect!!!!!!!! Thanks again everyone who has already supported Aiden through the cookbook. It has helped out so much and I know it will continue to help out with the upcoming surgeries in Aiden's future!

Playtime in Chicago

After a few tough days after surgery, Aiden was coming around so we decided to make the best of our trip by getting out of the hotel and doing something fun! It was actually better for Aiden to be out looking at stuff rather than being stuck in the hotel.

Our first venture downtown was quite the adventure. We had decided to hang out with the Carraro family (other nevus family staying at the hotel) and go to the John Hancock Observatory. We had briefly discussed going the night before but nothing was set in stone. So in the morning, I messaged them letting them know that we would meet them at the train station. I never heard back from them, which I thought was odd but we still headed out. We were getting close to the train station and I noticed that I had a text message. It was Nadia....they had woke up LATE. In the meantime, we were trying to find a place to park and wasn't having any luck at all. Since I knew the other family was running late, we weren't rushing around too much trying to park. It's now 10:26...the time that the train is supposed to depart and its very apparent that we won't be catching this train. Then I get a message from Nadia that the train is late and they are wondering where we are at. OMG....the irony was hysterical. So, the family that woke up 10 minutes before they were supposed to leave makes the train while MY family misses the train! Then to add to everything, the next train doesn't leave until 11:26! It gave us a good laugh (although at the time, Michael wasn't laughing) and we joked about it for the rest of the day.

By the time we arrived in downtown Chicago, we had no idea where exactly our friends were so we started walking in the direction we needed to go. Why we didn't take a taxi to the John Hancock Observatory is beyond me but we didn't....so we ended up walking about 1.5 miles to our destination. We actually ended up making really good time because we were only about 20 minutes behind our friends. We ate some lunch at the Water Tower and then headed over to John Hancock. The views were pretty awesome and we all enjoyed ourselves very much! We actually decided to walk back to the train station to catch some of the views of Chicago that we missed on our first trip. It went much faster as a group! The only thing we completely forgot about was a group picture of all of us. Bummer!

The next day, Michael and I ventured downtown again and went to the Shedd Aquarium. We still took the train but didn't miss it this time! We did, however, take a taxi! This aquarium was pretty awesome. Aiden was so excited to look at everything and it made me so happy to see him doing so well out on the town. After we spent a majority of the day here, we went to eat at Gino's East for some traditional deep dish pizza. It was so yummy that we even brought some back to the hotel for our friends at the hotel.

On Michael's last day with us, we went out to breakfast (in the pouring rain) at Walker Bros, which was FANTASTIC and then took a road trip about an hour away from us to meet the King family, another nevus family. It was Austin's 4th birthday party! He is a very special little boy and it was great to finally get to meet him and all of his family. They are all so awesome!

The week went by so fast and before we knew it, Michael was flying back home and we were waiting for my family to arrive. My mom was flying in with my grandma while my cousin was driving in from Michigan with her family(Thanks so much to Grandma, Aunt Karen, Terra, Pete, Mia, Chase & Mateo for coming down). We had a blast with them. The rain changed our plans for one of the days so we made the most of the mall! The other day we went to the Lincoln Park Zoo. If any of you are ever in Chicago, you should definitely visit this zoo. Its completely free to get in (except for parking) and its actually a very large zoo with a huge variety of animals. It was super hot and humid the day we went so we didn't get to explore very much of the zoo but the time we spent was a lot of fun! I definitely would love to go back!

After the zoo, we said goodbye to my family from Michigan as they headed back home and then killed some time before meeting up with a good friend of mine, Jennifer Wolohan. We went to grade school together back when I lived in Michigan and she nows lives in Chicago! It was so much fun catching up with her and her husband, Patrick. She even had my pictures for me that she took back in June for us. She is an AMAZING photographer. Check her website out at www.photographie51.com!!!!!!

I was so happy to be able to turn our long trip to Chicago into a little bit of fun. The Windy City is pretty cool! Here are some pictures of the fun times we had...

Looking out the window at the John Hancock Observatory

Aiden enjoyed looking at his reflection here!

At the Aquarium...of course Aiden was asleep when we decided to take this picture!

Austin at his birthday party! 

Mateo and Aiden 

Mia and Chase at the zoo

Eating at Gino's East! He loves his snacks! 

Surgery # 1

Now that we are settled back home, I can catch up on some serious blogging about Aiden's surgery. So here it is....

We left on Sunday, August 14th to fly to Chicago. The departure was everything I thought it would be...emotional. It was hard to say goodbye to my family because I knew what leaving meant but I pulled through and we were on our way. We had a perfect flight, which I wasn't expecting because I thought that Aiden would be a little restless sitting on our laps for a little over 4 hours. It was supposed to be a full flight but we were lucky enough to have the entire row to ourselves. Aiden was IN HEAVEN. He sat there the whole time playing with his toys and looking out the window.

We finally arrived in Chicago and were on our way to the hotel. It was about 45 minutes away but of course the GPS made a mistake and it took us about 90 minutes to finally arrive. We were starving so we headed out for some dinner and then when we arrived back at the hotel, we met up with another nevus family who were also staying there. Nadia, Roberto, Taelor (nevus owner) and Jaeda made our night!  They are an AWESOME family and I am so grateful to have them there with us.

We were told that we could give Aiden his last feeding at midnight so Michael and I stayed awake until then. I knew that I wouldn't sleep much at all but I wasn't expecting Aiden to have so much trouble sleeping. He woke up a few hours after going down and tossed and turned in the bed with us all night long. We had to be up at 5am and I thought that time would never come but finally the alarm went off and we were off to the hospital.  I felt very anxious on the drive over but I was doing better than I thought.

Once in our waiting area, we put on Aiden's superhero cape and let him play with some toys as a distraction to not want to eat since we could no longer give him anything. He was pretty happy looking at everything and didn't appear to be bothered by not eating.

Dr. Bauer came in at 7am and we were so excited to finally meet him in person! He looked at Aiden's nevus and explained that he would be sticking to what he told us originally. One expander would be placed in the abdomen and the other would be on his back. He was exactly how I expected him to be...AWESOME.

Fifteen minutes later, they brought us near the recovery room and showed us around so we would know what to do once surgery was over. They told us to stay there with Aiden until someone came to get him. I will never forget this. My heart was beating so fast and I could feel the tears backing up. I was holding Aiden and just like that, a lady came and took him from me. NO WARNING at all...I didn't even have a chance to tell him goodbye, kiss him or say I love you. I know that I would have cried my eyes out no matter what but this caused a serious breakdown. A very kind recovery nurse came up to me and started to tear up with me and told me she would be here with him when he got out and that everything was going to be fine.

After calming down a bit, Michael and I decided to head to the cafeteria for some breakfast. I wasn't really that hungry to eat but it actually helped settle by nerves and calm by tears down. By the time we headed back up to the waiting room, we  had been told that he was in surgery and doing great. So there we sat waiting. I was pleasantly surprised how fast the time was going by. Before I knew it, Dr. Bauer was standing by the door waving us over. He told us Aiden did great and there were no complications. We talked briefly about how to care for him after surgery and then had a great general conversation about nevus in general. I can't say this enough...Dr. Bauer is beyond incredible. He is so invested in CMN and its very very very sincere.

It was only a few minutes after meeting with Dr. Bauer that we were called to the recovery room. We put on our recovery"uniform" and entered the room. We had been warned that he will most likely be screaming but I heard silence. I walked over to where he was and my heart dropped. He looked so sad laying there and I was dying to hold him. The nurse wasted no time getting him to me so I was thankful for that. He cried a little bit but eventually went back to sleep for about an hour.

The best birthday present I had...having him back in my arms.

After he was starting to wake up, we moved to our private room. He actually fell back asleep for awhile before he had anything to eat. He didn't seem very interested in eating so we tried Pedialyte to start out with. He seemed to do okay with it but he fell back to sleep. We tried some formula after this but all he wanted was 2 oz. I thought he would be more hungry than that but apparently the anesthesia was still wearing off. We thought that we might be able to go back to the hotel if he continued to do so well. All the nurses commented about how well he was doing.

Well unfortunately it didn't stay that way. Around 3pm was the changing point. He did take some baby food and some more formula but it was obvious that he was very uncomfortable. He had several outbursts of horrible screaming over the next several hours. It was heartbreaking to hear him cry like that.  We knew at this point that we would be staying overnight. It was a very long night and Michael and I were exhausted. We took turns holding him since he didn't want to be put down. This was the only way either one of us was going to get any bit of sleep in.

Eventually the morning came and I was very relieved to see that Aiden was looking better already. We had our first dressing change and shortly after that we were ready to go. Aiden seemed very sensitive still when we picked him up or changed his drains but it was so much better than the day before. I was so glad that we were moving forward. I appreciate everyone who was there for me to push me through this because it certainly wasn't easy.

Here are some pictures from the day:

What the heck just happened to me MOM?

Daddy finally getting to hold Aiden!

Finally able to put him down for a bit .

Seriously Mom, I HATE these arm restraints!

Finally a SMILE

After we left the hospital, we went to Dr. Bauer's office to meet Mim, one of his AMAZING NURSES. Mim made us feel so much better about everything! She showed us a presentation on expanders and discussed what to expect over the next 12 weeks. She was also kind enough to do another dressing change with us since it happened so fast in the hospital. I was surprised that it didn't look as bad as I thought it would. There were not too many stitches and it looked great so far. Take a look for yourself....

Belly expander with 75 cc

Back expander with 90 cc

Stay tuned for more updates!

One Week and Counting

It is so hard to believe that my sweet little Aiden is about to begin surgery one week from today. I swear that it feels like yesterday that I was on the phone with Dr. Bauer's office, scheduling the date. I will probably never forget that day. I assumed that the surgery would be some time in August but I was surprised to hear that the next available date was August 15th...my birthday of all days. It will be most certainly, a birthday that I will never forget. The best present that day will be holding my baby after a successful surgery.

I have tried to prepare myself for this day but I have realized that there is nothing that I can do to make me less nervous or emotional. It won't be easy but I know that this is the right choice for Aiden. The only thing that eases my mind at all, is knowing that Dr. Bauer is our surgeon. He is so wonderful and I am so happy that a few of my very close friends introduced me to him.

A few of Aiden's little nevus buddies have recently had their surgery with Dr. Bauer and they are doing fantastic. Brayden, who was born the same day as Aiden, had tissue expanders placed a few weeks ago and it amazes me how fast his little bubbles are growing. Zac and Brooklyn also had tissue expanders placed for round two. I am so happy to have all three of them going through the expansion process around the same time as Aiden. I can guarantee that we will be sharing stories and helping each other out along the way! Sully and Josh had their tissue expanders removed and the results were AMAZING!!!!!!! As I was reading up on their blogs and looking at pictures, I couldn't help but to cry out of happiness because it put it all into perspective for Aiden's journey. Yes, its difficult and overwhelming to look at the stitches and scarring, but I am able to look beyond that and see how awesome this is going to be for Aiden at the end. The heartache will be worth it in the end if Aiden's new skin looks anything like theirs. I am so glad to have these families in my life and I am also glad that I continue to meet more and more families throughout this journey. They have made me stronger and we will forever share a special bond that only we can understand.

I would like to THANK all of you that have supported Aiden through the cookbook! It has been so heartwarming to see all the love from our friends, families, and even strangers. When I made my initial order of 500, I was a little weary that we could sell all of those but we actually have to order MORE cookbooks now because they are selling so fast. The best part is that a lot of the cookbooks were sold by friends/family who wanted to help support Aiden by showing them around to people they know! I only have a few boxes left so please let me know if you want a copy before the first order runs out. If you are interested in helping sell the second batch, please let me know! I can't wait to explain to Aiden what everyone did to support his trips to Chicago with the AMAZING DR. BAUER!!!!!!!!!!!!!!!!!

So....we are off to Chicago on SUNDAY. I will keep you updated throughout the progress. Aiden is currently the youngest so we should be first on the list for surgery but I will find out for sure by Friday. Thanks again for all the support! Please keep him in your thoughts as we begin his nevus removal journey!

I will leave you with some recent pictures of Aiden!