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