A Little Setback...

I have been a little behind on the blogging so let me catch you up to speed.

Last week, we did Aiden's 5th fill. I was really nervous to do the fill after my last experience but I expected that. With that being said, I decided to change things up a bit. Instead of Michael holding Aiden, I changed it to my mom. If I did need any help pushing the syringe then Michael would be there to help.

I am happy to report that there were no issues and I didn't need help!There was a slight cry at first but I believe that it was more to do with him being tired and held down than in pain. The back expander took 90cc and still felt a little soft, but I knew there was NO WAY I was going over that number. I was very surprised that the belly expander took in 50cc because it felt firm to start with but it just goes to show how amazing these expanders can be. So, Aiden now has 370cc in the back and 325cc in the front. He is so HUGE...and we still have lots of filling left to do. Take a look at his growing bubbles...

325cc

370cc

After the fill, we went on with our day as usual. Over the course of the next couple of days, I noticed a problem. His stitches were red again in the back and now in the front too. Some of the areas looked really concerning so I emailed Dr. Bauer to see what he had to say.

Mim called me the next day and said that Dr. Bauer wanted the stitches to be removed because it seemed infected. One slight problem...we were out of town and wouldn't be back for a few days. Mim said that if we were comfortable enough then we could try removing them ourselves. GULP. Oh boy, this didn't sound fun. Dr. Bauer also called in an antibiotic for us to start when we got home. Unfortunately, we didn't have the right kind of tweezers with us so we had to wait until we got home to remove the stitches.

Fast forward to Monday. After arriving home, I noticed that Aiden was a little fussy. Then I felt his forehead and he was burning up. His temperature was 101.5. CRAP...I instantly thought it was the stitches and I felt bad that we hadn't removed them yet but then he started coughing a bit so I realized that it could be that he is just sick.

After giving him a cool bath and numbing the stitch area, we began removing them. This time, it was Michael's turn. I have never removed stitches and since I already do the fills, I didn't want Aiden associating me always with "the one who pokes at me." The first few went ok but Aiden was moving around too much and the stitches were tough to get out. After he started crying (in some cases, screaming...which was mainly from being tired and now not feeling well), we pulled the plug and waited until he fell asleep. It was no fun but Michael eventually found a way to make it work and we got most of the stitches out. The ends were just way too difficult for us to figure out so we decided to take him to our pediatrician the following day.

Unfortunately, the pediatrician didn't have much luck either. He was able to remove the last one on the belly expander so I was at least happy about that. He told us that Aiden had an ear infection but his lungs looked clear and that the coughing could just be a complication. So, I emailed Dr. Bauer to update him on the doctor appointment and he said that the remaining stitches will probably be fine because the the tension is gone from that area now. He also said that if Aiden was still sick on Thursday then we would have to skip his fill this week.

Yesterday would have been fill #6 but he was still not feeling well. Even though this is a little setback, I think it is good that the incision area has time to heal without the pressure of expanding more skin. Hopefully, Aiden will bounce back in next couple of days and we will be right back on track. On a happier note, the incision area is looking so much better since the beginning of the week so I am glad that the stitches were removed.

If you can believe it, we only have six more weeks from tomorrow before we will be flying back to Chicago and removing these bubbles! Then we can rest for a few months and start again.

Just another friendly reminder that we still have cookbooks left. If you would like a copy or know anyone who would, please let me know! Thanks and have a great weekend!

Fill #4

Well, I wish I could say that tonight's fill was just as easy as the rest of the fills but that certainly wasn't the case. We had a pretty long day to begin with. Aiden barely took a nap all day long and was pretty exhausted by the time Michael had arrived home.

We ate dinner while the lidocaine was numbing Aiden's ports and then cleaned up the kitchen before starting. Everything was prepared in advanced so all we had to do was get the Baby Mum Mum's for Aiden and get it started. I chose to do the back expander first. The needle went into the port and it was a smooth transition...no tears. Well, unfortunately sometimes the syringe is pretty difficult for me to push and I have to find some strength to get it to work. After about 20cc, I accidentally pulled back on the syringe and out came the needle and the screaming. It was awful. I felt TERRIBLE and of course started to cry. We settled him down (and ME too) and started over with clean supplies but when I went to put in the needle, he freaked out. Tears streaming down his face...it was heartbreaking. My mom, Michael and I all decided that 20cc was all we were going to get in. It was a disappointment because that expander probably could have taken at least 80cc.

I had to give myself a moment to pull myself together and do the belly expander. When I was ready, Aiden was looking at me and shaking his head no. CRAP! That was tough for me but I knew that he would not remember this after a few minutes so in I went. Tears came once again when the needle went in.  Luckily, he had a juice bottle this time and he calmed down. My mom held onto the needle this time because I was afraid the same thing was going to happen. I was shaking to death but was able to get in 40cc, which was good for that expander.

The belly expander is now up to 275cc and the back expander is at 280cc. Not what I had hoped for tonight (at least for the back) but I know that this stuff can happen and that I can still do this. I am so thankful for my mommy friends who have gone through expansions because they helped assure me that everything is fine and I did the best I could. Thank you Christine and Amie for talking me through this.

I did email Dr. Bauer to see if we can possibly try the back again in a few days but if not, hopefully we can catch up the following week. Even though it did scare me, it was just a little bump in our nevus journey and I know that this is still completely manageable. I know that I let my emotions get the best of me but I have put it behind me.

Luckily, Aiden did go to bed EARLY tonight.

Belly 275cc

Back 280cc

Fill # 3

A week has gone by already so that means it was time for another fill today. This is Aiden's third fill but the second at home. I felt a lot better this time about doing the fill without a handy nurse to help us out if needed.

We had originally planned on doing the fill in the morning before Michael left for work, but Aiden's prescription of the Lidocaine cream (this helps numb his ports) wasn't going to be in until after noon, so we had a change of plans. Since Michael is closing tonight, we decided that he would take an extended lunch and come home around 2:30. I had everything ready to go before he arrived so that he could get back to work as quickly as possible.

With the rice cakes in hand, we were ready to begin! I decided to do the back expander again first this time. This expander had softened up quite a bit, so I was prepared to get more than 60cc in this time. I had a difficult time pushing the syringe to get the saline in but I was able to get in a total of 70cc! Aiden didn't even flinch...he was too busy eating his snack! I probably could have gotten a little more in but I am playing the cautious card. His stitches are finally healing from the redness, so I didn't want to cause too much pressure to that area.

Then it was time for the front expander. I prepared for a cry because of last time, but to my surprise there was not a single peep. I was able to get in 60cc and I was happy with that result. He was in such a great mood that he even let me snap a few pictures before wanting to get down! I hope every fill is this smooth.

I can't believe that we are scheduled to do this 9 more times. He already looks so big to me. He is really going to have a difficult time crawling around towards the end but I know that this will go by so fast. So far, this process is going great so I can only hope that he continues to stay healthy.

Take a look at his bubbles now...

Back expander 260cc

Belly expander 235cc

Side view

I am pretty happy with the results so far. It is tough watching them go through this but at the end of the day, I would rather it be tough on me than tough on him. Aiden goes on with his days like nothing is different and that is exactly how I want it to be.

On another note, Aiden's second shipment of cookbooks have arrived! Michael and I can't begin to thank everyone for all the support so far. You all have lifted such a huge amount of weight from our shoulders! If you have yet to get your copy, please let me know! If you live in my area, we will find a time to meet up with you. If you are out of town, the book is available to order on this website! With Christmas around the corner, these cookbooks also make a great gift. Help us spread the word! Thanks again!

10 months old and First Fill At Home

Today marked two big days for Aiden. The first one being that he turned 10 months old today. I can't believe that time has flown by this fast. It certainly doesn't feel like he has been with us for ten months now but I love every minute of it. He is such a busy little guy...always on the move. He has mastered crawling and pulling himself up. Today, he even stood alone for a spilt second. I will admit that this makes me nervous with expanders in but I have been told several times that it takes a lot to hurt the expanders. Still, the mom in me is very cautious. He also is doing really well with eating solid food and tries new things all the time. Aiden can say "dada", sometimes "mama" and what we think is "hi." This week, two front teeth popped through, making it a total of four teeth so far. Its amazing watching your little one grow up!

Today also marked Aiden's first fill at home...all by ourselves with no nurse to guide us. With that being said, I was WAY more nervous than I was a week ago. My nerves didn't really set in though until Michael and Aiden came to our little workstation. My heart was pounding so fast and I must have read the directions TEN times. I knew I had to get it over with so I took a deep breath and started the routine of cleaning the area and going in with the needle. I know, it sounds bad but at the end of the day, it is doable. If it wasn't, I am 100% positive that Dr. Bauer would not allow us to do this at home.

We did the back expander first. Michael held Aiden in his lap while my mom stood by for extra assistance. When I put in the needle, he didn't even flinch...so I was really excited about this because last time he cried pretty immediately. It was a little hard to push the syringe but eventually I got a pretty good handle on it. I easily put in 60cc. Probably could have done a little more but the nurses had told me to take it easy the first few fills.

Then we went to do the front expander. I felt a little easier doing this one since I did the belly last time at Dr. Bauer's office. However, when I put in the needle, he cried. Some of the cream had slipped away from the port so I pretty much figured that it didn't quite numb all the way. My eyes instantly started to tear up. I felt bad but then I thought it could be a lot worse...he could be screaming his head off. My mom handed him another rice cake and he settled down. This time, it was a little more difficult to push the syringe but I managed to also get in 60cc!

What a relief! After everything was all over, Aiden went back to his usual happy self as if nothing had occurred. I am just glad that its over with! Now the belly expander has 175cc and the back expander has 190cc. He already looks so HUGE to me that I am having a hard time picturing what he will look like towards the end but so far everything is going great. The only minor complication that we have is that some of the stitches on his back have become red and puffy (they were never like this before) but for now, I am told to continue our normal routine with the Aquaphor. Mim said that if its gets worse then they may consider removing the sutures. Not too concerned but we shall see what happens.

His growing bubbles...

Belly at 175cc

Back at 190cc

Back to playing!

And crawling...funny how the belly one looks larger but is actually the smaller one! 

Happy 10 Months to my sweet little boy

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!