No Sweat...Literally...

Whew...I can't believe 11 weeks have come and gone since we left Chicago.  Today, I am sitting in the same hotel I was in August, getting ready for surgery #4 - the second round- tissue expander removal.  This past 11 weeks has been a whirlwind.  Adding a Kindergartner to our lives certainly made things more taxing.  Books to be read and homework to be done, nightly and lot's of little school stuff.  The greatest challenge being picking up two different kids at two different times in two different locations...guess we have been a little spoiled with our fabulous daytime caregiver Mrs. Bunch who has taken care of Zoie for the past 4 years and Zac since he was 10 weeks old.  So...I apologize for not keeping everyone as informed as they would've liked I simply have not had two extra minutes to rub together and my DVR proves it LOL.

Anywhoo...after an EXTREMELY rough start in this round of tissue expansion, I must say...it was all downhill from there.  After our fills gone awry, I was reluctant to try again but of course knew that this was just a horse I had to get back on.  My little angel Zoie said to me "Mommy, I believe in you...and I KNOW you can do Zac's fill...I just know you can."  Yes people...I have my very own personal Anthony Robbins...:)

Our next fill and every subsequent fill thereafter went wonderfully thanks to my bestie Candy and her terrific girls who were all to eager to keep Zac's attention while we did the fill.  With every fill we were able to get 90cc of saline in!  We are ready for tomorrow's removal surgery with 750cc of saline and lots of pretty new skin!!  Woo Hoo!!  I don't know what size bra he'd need if he needed one but it would be at least an E cup! :)

I will be so happy to have more of this back nevus removed.  There are many people that think that this surgery is for cosmetic purposes so for my friends and family - and anyone considering removal of their child's nevus I have just a few things to say about my opinion on the subject.
I will say that I believe each parent has the right to make choices for their child - this is purely MY opinion on this condition.

• Cancer risks - I mentioned before that Zac's nevus skin has potential cancer risks and even though the risk is small...how small is too small??  I mean...I don't know about you...but 1% is even too much for me.  If he got cancer after the removal, I would know that I had done everything I could and never regret not having done more.
• Fragility - This skin is extremely fragile.  There is little or no fat underneath it - the skin damages easily and takes great pains to heal.  I have heard it gets worse with age.
• Itching!  This skin can be VERY itchy!  Though Zac does not currently have any issues with itching - who wants to wait to find out if he will forever want to carry around a back scratcher.
• SWEAT!  No sweating!  Seriously guys...this skin does not sweat!!!  AND I live in the desert!!  For anyone w/ a child with a torso covering nevus...beware.  I just endured my first real Summer where Zac was in and out of the heat.  NEVER ONCE did I feel moisture on his torso.  His head, however, sweats profusely!  I must admit, living in the climate I do, this is the one that scares me the worst and the one I think is overlooked the most by most parents.  The body sweats to cool itself down and prevent overheating.  If it can't sweat you run the risk of seizures, heat stroke, etc.  Hyperthermia
• Hair...do I really need to go into more detail here...?  I trim the cute little nevus on his eyebrow every two weeks...  And I have heard from adult nevi wearers that over time...nevus hair on the scalp and other places can really thin...  great if it's on your back...not so much if it's on your head...
• Laser - well, laser only removes the pigment...this is what I think of when I think of the words "for cosmetic purposes".  Besides, do you know that laser generally requires more medication for pain management than Zac does with surgery?  I have never had to give him more than Motrin...really!
• Waiting until later...  There was about 3 seconds where I thought about leaving the nevus and letting Zac make his own decision later.  I suppose that someone older could have expansion surgeries done...but this is where I have the strongest feelings that what I am doing is 100% right for my child.  I have seen Zac carry around 750cc of saline, toddle, spin, laugh and enjoy life not even realizing that he has a special little bubble!  There have been no developmental delays - he started to crawl right before his first tissue expander was put in and started to walk right after the second one was put in.  I have seen him the day after removal surgery acting as if nothing ever happened!  His body adapts and heals better than it would at age 5...age 8 or age 16.  750cc of saline is going to cover most of his back...if he were older, wouldn't he need twice the amount to cover such a large space?   He is not aware of stares or questions and the BEST PART....by the time this is done...the only one who will remember it is ME!  I will remember every hospital stay, every injection, every stare, every comment, every explanation, every antibiotic, every dressing...the smell of anesthesia and that yellow gauze that makes me want to hurl.  Essentially, I feel that when this is all done, I will then have achieved what every parent wants to do for their child...take the pain for them.  I am so very thankful and blessed that Zac has the option for such a swift and wonderful removal and that we found Dr. Bauer and his wonderful team and I am going to wrap my arms around such a blessing and welcome it!   

When Zac is older and asks me what it was like going through this process...my reply will be... 'no sweat'.

Flipping Out!

A visit to Shedd Aquarium

Sorry we have been MIA for the past few weeks.  Truth be told.  I was not as...well, motivated for this next round of expansion and I have been trying to find ways to get myself excited to share this journey.  For all my fellow nevus mommies (especially the ones considering removal) I want to be 100% completely honest because I want you all to have a good idea of what you can expect; For all my friends and family, I don't want to completely worry you by taking you down the road of trials and tribulations.  So...with that said, here comes an update on the past 3 (or more) weeks...

We came home from a great trip to Chicago.  Tissue expanders inserted...check!  125cc of saline as a great head start...check!  Kids didn't drive us completely nuts on the plane ride home...check!!  I wasn't really excited that this time around, Zac was still draining quite a bit so Dr. Bauer's office was unable to take them out for me before we left like they usually do.  I was also not really excited that this time around, the port is located in the upper thigh/hip area - making it a much deeper target and harder to see.  So since the drain was still in, I had to keep Zac a little more under lock and key - I didn't want any additional exposure to the opening.  It was bad enough that while we were in Chicago one day (at the mall no less) I went to change the drain and the needle popped out of the drainage tube!!  I was a little freaked out as I tried to shimmy the blunt end of the needle back up into the tubing.  Because of this I had to use a little extra caution when changing the tubes.

The day we got home, Bruce had to go back to work.  Not just back to work at the computer, but back to work traveling!!  I won't lie, I told him we would be fine but was having a complete panic attack thinking about being alone.  When 'first fill' day came along, Bruce was still working out of state so I had to enlist in some additional help from my close friend Candy.  I packed up all my supplies and headed over to her house ready to tackle our first fill.  I applied the lidoacaine and waited for our big moment.  We got Zac into position and just as I went in to access the port - I hit the button on the needle that makes it retract!!!  CRAP!  I should've known I would do this!  I usually do the first time around.  Trouble was...I didn't have an extra!  So...we piled into my car and headed to my house quickly before the lidocaine wore off.  We once again got him into position and this time I went in w/ the needle.  I thought I was in far enough...thought I felt the plate of the port.  I won't give you the gory details...but let's just say, I was not able to access the port correctly.  Zac was screaming, I was freaking out...and though she hid it well...I am sure Candy was freaked out for life.

I decided that I couldn't possibly go thru this again w/out the help of a professional...so I immediately called my (BNMF) best nevus mommy friend who just went thru expansion with ports in both thighs.  I went over to her house the next day, nervous as hell but ready to try again.  We got everything ready to go...but when I went to access the port, I could tell something was not right!  The port had FLIPPED!!!  Crap!  Why didn't I pay more attention in all of those Nevus Outreach Support Group strings about flipped ports!!  We called Dr. Bauer's office and talked to Mim who was so wonderfully calm and she explained to me how the port would have to be flipped back over.  One problem...I was so completely shut down by now, there was no way I could do it.  Thank God my BNMF was thinking with a level head.  Call Dr. Price she said.  I did.  Come on down she said...simple as that.  After a very good cry (along w/ my BNMF) I headed to Phx. Children's Hospital.  

Waiting for Dr. Price and a good look at the removals on my leg!

Let me tell you that Dr. Harper Price and her assistant, Kellie are completely awesome, phenomenal...I could really go on and on....  Dr. Price flipped the port in a matter of minutes, removed Zac's stitches from above his knee, then she and Kellie told me they would help me do the fill since I had everything with me.  We started the fill but this time something else was weird.  I had to push SO HARD to get the saline in.  I was using all my strength to do it and when I got to 25cc...it wouldn't take another drop!  UGH!  I called Mim and she told me that it was possibly that the line was kinked and to try moving his leg and/or lifting up on the expander.  Well...needless to say, Zac had been thru enough at this point.  So we called it quits for the day and Dr. Price and Kellie graciously offered to help me with future fills....(Oh and did I forget to mention that this same morning was the day my precious baby girl started Kindergarten???  Did I also forget to mention that since I was stuck at PCH I didn't get to pick her up on her FIRST DAY but thank God my Gramma had come to visit/help me and was able to pick her up!!!)  How much can a person take in a 24 hour period...huh?  Well...don't ever ask that...

Fast forward a few days....husband back...check!  Zoie enjoying school....double check!!  Ready to try another fill...a good one this time...check!!!  Ready to go back to work....check, check, check!!!!  The night before I got ready to return to work (and before his next fill), I felt Zac's head...it was really warm.  I started to get this panicky feeling and I actually got down on my hands and knees and started praying.  The next morning, I was getting ready to go back to work...after all it's just a fever I told myself.  He can stay home w/ Daddy today...  On my way to work, his temperature rose to 102 and my heart just sunk.  I couldn't possibly go on w/ my day at work knowing that something was wrong.

I took Zac to our pediatrician who ran a blood test and sure enough...just as my gut had told me, Zac had a pretty good infection.  One big enough for a night in the hospital and a round of IV antibiotics.  So, we spent the night at John C. Lincoln Hospital - had wonderful nurses (not so good food - bleh!)  We are home now and hoping we can get a good fill done soon and I removed the stitches that he had left on the ankle of the left leg myself!  Please pray that this round of expansion starts to go smoother - mama can't take much more stress...really...  :)  To those of you who have been especially close to me this past week (and you know who you are) thanks so much for being there for me - I can't tell you how much your support has meant to me!

Feeling better at JCL in the playroom
 (I don't know what is up w/ the teapot but I couldn't get it away from him)

Getting my antibiotics and starting to feel a little better.

Oh What a Night!

What an AWESOME NIGHT!  It was so amazing to finally meet so many wonderful fellow nevus families in person! AND a special visit from Dr. Bauer was the icing on the cake.   

Zac had a great time meeting new friends and the night seemed to go by so quickly that I missed talking to a few families :(

Thanks to everyone who made it - it was a night to remember.  And thanks to Kristi for joining us and taking all of our pictures :)

Christine, Merilee, Beth and me

Me, Zac and Dr. B

Part of our Nevus Family

Rest Assured

We are resting peacefully back at the hotel after leaving the hospital at 10 a.m. this morning.   I decided to spend the full night at Highland Park Hospital because Zac seemed to be in some pain and very restless after coming out of his surgery.  After some T3 later in the evening from our favorite nurse Sandy, and a half of bag of fish crackers, he was able to get some good sleep.  

Dr. Bauer was able to remove 85% of two of the nevi on his left leg, the one on his ankle and the one above his knee, both bigger than the size of a silver dollar.  He will remove the other 15% on a future surgery.  The satellite on the ankle was also very raised and pretty hairy.  I can't tell you how excited I was when Dr. Bauer drew his two little X's on these spots with his surgical marker.  The sat on the ankle seems to be a real attention getter and I am so glad to have it gone.

This morning when the nurses came in to change Zac's dressings he was all smiles and giggles.  What an amazing kid!  One of our nurses, Peggy, remarked that this was why she loved doing peds.  That's why we call him Captain Happy!

at 3 months old-ankle sat

at 3 months old-ankle sat

at 3 months old-sat above the knee

Dr. Bauer also placed one 750 cc expander in his left side, leaning more toward the front since there is more 'good' skin there and gave us a head start with 150cc - it will hold up to 1000 cc!!!  The port is located in his upper thigh.  I'll post pictures for those of you who are curious when we go to our next check-up on Tuesday.  He also only has one drain - which is nice for Mommy because those things are gross.

Now for more exciting news.  When Wendy booked Zac's surgery the same day as Sully and Josh's and w/in a week of Brooklyn's the four of us mommies were very excited to reunite again.  We all booked the same hotel so that we could all be close to each other for some more bonding time (Merilee brought the blender and one other unnamed person brought the tequila LOL).  We realize we are so lucky to have each other not only for moral support but for the ability to help one another with whatever is needed.  For three of us, our girls are the best of friends and love to play together.

As we drew nearer to our trip, we found two other families with surgeries around the same time and we convinced them to stay at Staybridge Suites with us...then came the idea to get the word out to see if there were any more families visiting or nearby who would like to join us for a small gathering on Sunday night!  Before we knew it, we were up to about 9 families!!  Our hotel is so super-fabulous and told us we could use the dining hall to host our get-together.  Today we found out we could possibly see some other VERY special people there...Kristi & Susan from Dr. Bauer's office....and maybe even Dr. B himself!!!  What a great photo-op that will be :)

I am soooo excited to finally meet in person, some of the women I already call close friends despite us having never met face-to-face.  This is a true gift from God.

Ready For Round 2

I have been procrastinating posting on this blog.  I think part of me thought that writing what was going to happen next would make it come faster...but here we are in Chicago again ready for Round 2 of tissue expansion.  I should be very excited about this round but like any mommy whose baby just went in for surgery, I feel a little anxiety.  We just dropped Zac off to Dr. Bruce Bauer 10 minutes ago and I am really excited to see the progress!!
For this round of tissue expansion Zac will again most likely have only one tissue expander put into the same area as before.  Dr. Bauer was going to try to put one into the top right shoulder since Zac's nevus stretches up to the top of his shoulder on one side, but he doesn't think Zac's shoulder is big enough yet to get really good results from placing an expander there.  What I am extra excited about is that after hoping for removal of the satellite on Zac's left ankle for the past two surgeries, this time I really think Dr. Bauer is going to be able to do it.  What I am extra, extra excited about is that he is also going to try to remove the large satellite  above his knee as well!  I am feeling pretty good about it since Dr. B actually marked the two areas with the surgical pen this time.  :)  
We just sat down in the waiting room and are anticipating about a 1 1/2 hour wait.  Zoie is back at the hotel playing with her friend Cali (thanks Merilee!!!) and I am sure is much happier there than here with me and Bruce.  I am looking forward to posting more this week as we have many exciting things going on!  I'll give you a little spoiler...there are at least 6 fellow nevus-families staying at the Staybridge Suites in Lincolnshire...woo hoo!

Sibling Revelry

Well, it was a party day in the Moller house on Sunday as we celebrated Zac's FIRST BIRTHDAY - and Zoie's 5th Birthday!!  Yep...two parties, two kids, one special day because both my babies were born on May 1st...four years, one hour and thirty-two minutes apart.  We had an all-girl luau in the morning and a big family party Sunday afternoon where Zac, in one-year old fashion...destroyed a cupcake, dipping his fingers into the frosting and then offering it to the people standing around him.

It was difficult to focus attention on two beautiful children, making sure they each got their moment in the spotlight but I think we did a very good job at it, making sure to sing Happy Birthday to each one individually.  I wish I could say the same about the last four months.  We have been so wrapped up in Zac's expansion process that we failed to notice a small skin condition that Zoie had of her own.  One night, Zoie and I were saying prayers and she said "Mommy, everyone has something but me..."  I had no idea what she meant so I asked her to give me an example.  She immediately gave me an example of how Zac had an expander...etc...you get the picture.  She was longing for some way to be recognized.  Those of you who are fellow nevus families know that this process is almost harder on the siblings.

Low and behold...leave it to a good friend (and fellow nevus mom) to find the perfect thing for Zoie to soak up the spotlight.  A Kiddieokee contest!!!  Now, I am not a stage mom by any means...but everyone that knows Zoie knows that she lives to perform.  So, last week, I posted a video of Zoie singing on YouTube and entered her in the 96.9 fm Kiddieokee contest.  She has already made the first cut!!  If she makes the top three, she will be invited to perform her song live at Desert Ridge on May 12th.  And if she wins that...she wins a trip to Legoland!!!  But she needs votes!!

So...I am going to ask you a favor.  If you have a few seconds, please VOTE FOR ZOIE by clicking the link below!   It only takes a second and all they ask for is your email address.  You can vote once a day per email address until 8 a.m. on May 9th.   I promise you will find the video very entertaining.
Click here to VOTE FOR ZOIE

Seeing Is Believing...

First of all, before I show you what I can hardly wait for you to see, I want to tell you a little story...

When Zac was about a month and a half old, we went to see our first pediatric dermatologist.  The wait to see this specialist was the longest wait of our lives.  We tried and tried to get in earlier, but they did not seem very concerned with Zac's skin condition...at least not enough for it to warrant squeezing him in their busy schedule.  Upon visiting our first pediatric dermatologist, he examined Zac and we asked some questions regarding satellites and removal.  He basically told us that it was possible to remove some of Zac's smaller satellites but it would leave extensive scarring.  So...he told us "you'll have to decide which is worse...a substantial scar - or a big hairy nevus".  REALLY??, we thought.  Isn't this 2010?  He then recommended that we look into a 'paravertebral stripping'...what the heck is this...yeah, we never quite understood it either but it basically has to do with stripping only the nevus skin over the spine on the back.  So...let me get this straight...it isn't bad enough that he has a big hairy speckled birthmark on his back...but let's strip ONLY the skin over the spine??  How do you even do something like that??

Well...next thing you know, we found Dr. Bruce Bauer in Chicago (and have since found Dr. Harper Price...our fabulous Pediatric Dermatologist) and GUESS WHAT.....after removing the hairy, puffy nevus on Zac's arm...here is what we have....

Arm Before

Arm After

Hmmm....where's the unsightly scar???  I have NO IDEA...LOL  This picture is fresh after I removed the stitches today.  It is absolutely beautiful and we are so happy with the results.  Captain Happy didn't even wince.
Thank you Dr. Bauer!!  And Praise God for such remarkable results and resilience in our little guy.

Drum Roll....

Our beautiful nurse, Mim - We luv her

With the help of our beautiful nurse Mim we were able to go into Dr. Bauer's office the day after the surgery for a clean set of dressings and to see Dr. Bauer's handiwork.  I must say I was so very excited to see the results.  I want to remind you that this process is exactly that...a 'process'.  The journey is not over and once we are done with the few expansions Zac has left, we will end up with far less incision/scarring.  Plus, the little ones heal so much better than us adults.  I'll tell you that when I first saw the results of another friend's child, I thought to myself "oh, my...the incision is frankenstein-like...but please remember that the incision is placed on Nevus skin because it will be removed as the future Nevus is removed.  

Now!

January before any surgeries

You can really see the difference between the normal ivory skin, the light brown Nevus skin (which was part of the skin that was expanded) and the hairy, speckled Nevus skin.  Dr. Bauer ended up keeping part of the lighter Nevus skin that we expanded because it was better looking than the Nevus on the far right.

I know it makes you wince a little and it looks a little painful but this little superhero did so well!!  We did not spend the night in the hospital and he was his usual Captain Happy-self in the morning with just a little help from Motrin and Tylenol :)  He even got the drain out on Monday before we headed home from Chicago and Miss Mim said that his incisions looked just great!  We even got to meet a fellow Nevus-friend in the hospital on the day of the surgery thanks to the NOI Support Group!

Dr. Bauer is A-MAZING!  Thank you for all your prayers we are looking forward  to not worrying about filling tissue expanders for the next four months :)  Next up....Round 2 Expansion in August!!  Woot, woot!

Out Damn Spot!

We left sunny Arizona on Tuesday and tried to take the sunshine with us to Chicago...unfortunately, I picked up quite a nice cold having spent a few nights in a hospital and a couple nights up with Zac, who grew very uncomfortable as the week progressed.  He did not seem to sleep well and would wake up crying and then not want to go back to sleep.  I even skipped his last fill because he seemed to just be at his limit.

530cc of saline AND a new tooth!

What a wonderful trip!  I have to give props to Southwest Airlines who seemed to anticipate my every need even before I did...starting with....I had two bags, a pack n play and a car seat...my Gramma had 1 suitcase so naturally I thought I'd have to lie..."oh yes, two of those suitcases are my Gramma's and the pack n play, suitcase and car seat are mine..."   BUT to my surprise, after my Gramma told them the truth...that she only had one bag...they checked my FOUR ITEMS with NO PROBLEM!  Then, after praying I would sit by some nice, understanding people on the plane (and boy did God answer that one!  Thank you so much for sending me those wonderful people who helped me out SO MUCH!) and hoping Zac would be calm enough for 5 minutes for me to finish a coke - SW served my soft drink...with a lid!  These people are awesome!!

Okay so, on Wednesday, we paid a visit to Dr. Bauer's office to get our pre-op check-up.  While we were sitting in the waiting room, someone said...did you say tissue expander?  Dr. Bauer put his first tissue expander in my son 15 years ago....to fix his webbed fingers."  Holy cow!!  Really??  Another fabulous use for tissue expanders and yet another fantastical thing that Dr. Bauer does to help children!!
This morning, we got to the hospital at 6 a.m....well, really close to 6 a.m....I guess I didn't realize that you need to put an extra 15 minutes in your schedule to scrape the ice off of your windshield here in the Springtime!  We got to Highland Park Hospital and were greeted by some of the same nurses that we saw in January.  What a wonderful group of people they all were.  Dr. Dobryman, the anesthesiologist paid us a visit followed by Dr. Bauer.  This surgery was so different than the first one.  I was...well, I was EXCITED!  I had no hesitation whatsoever when I handed Zac over to them.  I knew he was in the very best hands and that those hands were guided by the grace of God.

I'm too sexy for my nevus...

We waited for about two hours before Zac came out of surgery and Dr. Bauer came out and sat with me while he explained to me that he was able to excise a great deal of nevus from the back, as well as the small satellite on Zac's left arm.  While I was talking to Dr. Bauer, I couldn't help but think about what a wonderful person he was.  Kind, compassionate, sincere how he personally has changed the lives of thousands of children.  He thinks that it may be possible that Zac may only need two full rounds to be able to remove the rest of his trunk nevus!  I thank God for Dr. Bauer and for helping me find my way to him.  And... I am looking forward to changing Zac's dressings tomorrow to see his progress!

Recuperating

Captain Happy Takes On A Nasty Infection!

Daddy and Captain Happy in his Superhero cape!

Wow - this week did not exactly go how I had planned (what else is new around here, huh?).  What was planned...getting ahead at work and packing for our trip to visit Dr. Bauer in Chicago next Tuesday to have our tissue expander removed on Thursday.  What was not planned???  A trip to Phoenix Children's Hospital for two nights for a round of IV antibiotics!!!

It started on Monday night when Zac spiked a fever.  Though he's had 2 fevers during this expansion process, this one felt like it was higher.  The next morning, Zac was still really hot and very cranky.  He was also whimpering like he was in pain with any sort of movement.  I refilled his normal antibiotic and gave him his first half-dose.  The next day, he was still running very hot and acting even more listless...his temp registered 102.5!  We made an appointment with the pediatrician's office - we needed a pre-surgical physical anyway.  The doctor ran a  CBC and found that Zac's White Blood Count was VERY high.  His recommendation was that Zac needed IV antibiotics.  I immediately called Dr. Bauer's office and spoke to nurse Susan thinking we may need to go to Chicago a little earlier than planned if the expander was infected.  Susan said that IV antibiotics were a good idea and it would help him prepare for the surgery.  She said Dr. Bauer did not want Zac poked or prodded any more than he already had been for the first test at the ped's office and that the hospital should call Dr. Bauer as soon as we got to the hospital BEFORE they attempted anything.

We grabbed our superhero cape and headed to the hospital.  Upon arrival, we had the admitting doctor call Dr. Bauer and we proceeded with trying to find a good vein to put the antibiotics in.  When I talked to Dr. Bauer (who I called on his personal cell phone - I LOVE THIS MAN) he also wanted me to see if I could withdraw any fluid from the port area since it was swollen and looked like it could be the source of the infection.....oh, happy, happy, joy, joy...lucky me!  Why me when I am surrounded by a plethora of medical staff??  Dr. Bauer said that I knew the port and expander better than anyone there...(a huge compliment but....)  So...I'll spare you the details but let me tell you that slipping in that needle under these circumstances when Zac was NOT numb from Emla cream and already screaming....with a host of medical professionals hovering over you = the worst stress of my life!

After spending almost 4 hours in a triage room smaller than my closet...after watching two "IV teams" try to find a place to stick my beautiful boy...we decided to put the needle for the antibiotics in his head.  So, for the third time that day...I watched my little precious guy being held down and stuck by nurses...at least I didn't have to do the holding this time.  I sure was ready to do the comforting though.  After getting his little antenna, we were herded to another room of about the same size to wait for a bed.

After his first round of antibiotics - already improving!

So, Zac got his first round of antibiotics in this tiny room.  After that, he hung out with me on a gurney and watched American Idol with me.  ***Lesson learned....when choosing a vein for antibiotics - just choose the one in the head.  It seems painful but it wasn't any more painful than the hands or feet and the bonus was he couldn't see it and therefore didn't mess with it***

It was coming up on 9 p.m. (we'd been at the hospital since 1:30 p.m.) and Daddy had to leave to go get Zoie when we were transferred to our new, shared room.  Oh, yeay for the 16 year old boy we were sharing a room with - I am sure he was thrilled to share the room with a cranky baby LOL.  The sides of the hospital crib were not working so Zac and I slept huddled up on a padded cot/couch type thing which was slightly sloped making it a little challenging to not roll off while I was sleeping.

After the dark comes the dawn!  We woke up from a horrible night of sleep - but Zac was feeling so much better!!  We had to spend the entire day at the hospital much to our surprise since we went in thinking we'd be there for 24 hours...only to find out we may be there until Saturday morning.  After 4 rounds of antibiotics, we got to leave this morning though and we are VERY anxious to go to Chicago and visit our Super Team to get this tissue expander removed.  We are even more excited to have four whole months before we have to do this process again even though we are entirely thankful for it and the fantastic team of doctors and nurses in Chicago we are blessed to have found.

Happy Again!  What a trooper!

What Spots?

You know how you always hear, "it's not what you say...it's how you say it"?  Well, I don't know that that phrase applies in my life right now...  After almost a year of living with a funky, rare disorder that I can barely pronounce...I still haven't come up with a way to answer the million-dollar question "why does he have those spots?" or "what is wrong with him".  Usually these questions come from children because, let's face it, they are the only souls brave enough to ask.  I even had one little girl ask me why he had so many spots and then report it to her mother a moment later as if the mother was the one who really wanted to know.  I had to laugh because after the little girl asked, Zoie said "it's his congenital nevus."  That's it...just that simple...she may as well have said, "my brother has two eyes".
I guess maybe I am over thinking it.  I want to properly explain it so that people are educated.  I don't want to use the words birth defect, disorder or Congenital Melanocytic Nevus.  I can barely even say Melanocytic Nevus and when I do...the deadpan look I get is almost comical.  So...I hesitate.  I stammer and struggle with my words.  I don't know...maybe..."it's a rare skin condition"..."they were having dalmatian awareness week in heaven when he was born"...."what spots?"...  Maybe its because when I look at him I don't even see spots.
When Zac was born, he had a few satellites, but over the past year, satellites seem to have exploded all over his legs.  He looks like he's been splattered with coffee.  Now that summer is here and he is a shorts-wearing little dude, everyone seems to be asking.  Why am I so unprepared to answer what should be a very easy question.  It's a tough situation when you want to act like it's nothing  - he is a healthy, happy little boy and I refuse to give anyone the impression that he is not...yet it is obvious something is different.  And seriously folks...he has 500cc of saline in his side and all you can focus on are some measly little spots!!  I guess I will just have to let my four-year old answer from now on.

1 Month

8 months

What the heck is the amygdala??

Well, this week has been a little tough.  We have gotten news that we have been praying we would not hear since the day Zac was born ..."we found a spot of melanosis in the brain area".  Hearing such a thing could only mean one thing...Zachary has NCM (neurocutaneous melanosis).  Before you go googling NCM to get one step ahead of me and 'try' to educate yourself on NCM - please don't.  The internet is not always your friend and in cases of  NCM, such a rare disorder, it most certainly is NOT your friend.

Let me tell you what I do know about NCM - and tell you in normal people terms what I understand it to be.  When a child is born with nevi - particularly those that are large or in Zac's case, giant, there is a small chance of them having the same melanosis 'inside' the body.  Sometimes it can be found in the brain; sometimes it can be found on the spinal cord.  What can happen if melanosis is found inside the body....well, lots of things.  Seizures, hydrocephalus, leptomeningeal melanosis, even death.  I have heard that mentioning that your child has been diagnosed with NCM to someone who understands the disease gets you one of those sighs...followed by a sympathetic glance.  NCM is something no one wants their child to have.  So...how did we get here?

When Zac was 2 1/2 months old, he had his first MRI to scan his head and back in search of things that don't belong there.  When the scan came back, we were told that though the scan looked clear, there was a spot that was clouded - most likely from Zac moving during the MRI... (hmmm....wasn't he asleep..?).  Our dermatologist did not think there was a cause for concern though.  Bruce and I were a little uneasy that we a) just put our son through an MRI and sedation  b) paid a huge amount of money and c) still didn't feel like we had results that were 100% since there was an unidentifiable portion.  A couple months later while visiting our dermatologist, I asked for a copy of the MRI.  There, in plain English (and trust me, most of the MRI was not in plain English) it talked about the unidentifiable spot and said that we should think about repeating the scan in 6 months because the unidentifiable area was located in the amygdala-the most common area for NCM!  Well...my Mommy alarm really went off then.  I had a gut feeling that we should take a closer look.

The wonderful thing about Nevus Outreach is that we were able to send them a copy of Zac's MRI and they forward it to Dr. James Barkovich.  Dr. Barkovich is an extremely gifted pediatric radiologist who specializes in detecting NCM.  After sending a copy of Zac's MRI, I received Dr. Barkovich's results yesterday to learn that Zac has a 3mm parenchymal melanosis on his right amygdala.

After reading this report, I went through every emotion you can think of...sadness, fear, confusion, panic...but after talking to many people, from my fellow Nevus moms to our pediatric neurologist, what I am finding is that melanosis on the amygdala is actually quite common.  The amygdala is evidently, one part of the brain that doesn't really serve a specific function and most NCM remains asymptomatic.  Zac's is very small (3mm) and this morning, our neurologist even went so far as to say he believes Zac is developmentally advanced.

What does this all mean?  It means we pray.  It means we hope.  It means we choose to stay positive that one day, the initials NCM won't stir up the worst kind of fear in nevi wearers.  Though I am not going to lie... this tiny little spot will always be in the back of my mind.  I am choosing to believe that Zachary's inside spot will remain asymptomatic and put my trust in God that he will hear our prayers and keep our little guy healthy.

Man-Boob

440cc = a D cup

Wow!  440cc and three more fills to go!  3 x 70cc = 650cc!  While it seems like it has been smooth sailing I must say that last night's fill was a little stressful.  First of all, after 45 minutes with the numbing cream on Zac's port, when I went to insert the needle, he pulled away and wimpered...somehow...I have no idea how...he was NOT numb!!  What to do?!?  Do I just go through with the expansion hoping the needle is only a little uncomfortable or do I try numbing him up again and waiting 45 more minutes? I decided on the latter and
numbed him up again.  After 45 more minutes, not only was he numb - he was asleep because it was now 9:00 p.m!  This was definitely the easiest expansion to do.  He didn't wake up at all and we were able to inject 75cc into the expander.

Unfortunately, the challenge did not end there.  Zac woke up and felt a little warm to me so we gave him a little Tylenol.  He slept well but when he woke up this morning, he was still warm so I took his temperature and it was 100.2!  Luckily, he did not have any other symptoms other than being just a little cranky.  During this process I have tried to stay very positive but honestly, with every cough, sneeze or cry I worry that there is a greater illness or infection to follow. The chance of infection is so great with a foreign object in his little body and I feel like the world's biggest germ-a-phobe as I wipe down everything with alcohol gel and Clorox wipes and don't even take him to the nursery at church for fear of random germs.  Last week Zoie got the flu and the first thing that came to my mind is 'how am I going to quarantine Zac?'.  

Well, after talking to our favorite nurses at Dr. Bauer's office, we have decided it is necessary to put him back on the antibiotics - just as a precaution...  ugh.  BUT...FOUR MORE WEEKS!!  Just three more fills and we go back to Chicago.  Then we can rest for four months until we have to do it all again.  (Sigh)

Thank you everyone for your kind words and recipes....keep 'em coming.  I will be compiling them until the end of March.

The Third Time Is a Charm!

Well, here we are...only 5 more weeks until we head back to Chicago.  WOW!  That means we only have 5 more weeks to fill Zac's expander to its full potential.  Unfortunately, a couple of weeks ago, Zac caught a cold with a pretty nasty cough.  Due to the congestion brought on by the cold, we had to put him on antibiotics as a precaution so that he wouldn't develop an infection while the expander is in.  If this were to happen, the expander would probably have to come out early, depending on the degree of infection.  Something no one wants to risk.  There are some drawbacks to the little guy being on antibiotics, besides the fact that babies do not appreciate having 4ml of anything shoved in their mouth.  It also causes diarrhea which in turn gave him a nasty little diaper rash.  Poor little guy.  So while I am happy to say he has kicked the cold, he is left with the discomfort of a sensitive tushie...at least until that clears up.

It is absolutely amazing what he has been capable of with this expander in.  He started crawling the night before we left for Chicago in January.  I was so worried that the weight of the expander hinder his ability to crawl, creep, etc.  Not only has he been crawling all over the place but a few weeks ago he started pulling himself up with just one arm and trying to climb everything he sees! I have also noticed that he is a very careful thinker.  As we try to find creative ways to corral him into a designated 'safe' zone, you can see him analyze the road block and plan an escape route.  It has not seem to affect his sleep or anything else really.

We were able to do his third expansion last Wednesday, after missing a week because of the cold.  His expander is now up to 305cc.  The expander is a 500cc expander that can hold twice that.  Let's see 5 more weeks x about 70cc....350cc + 305cc = 655cc.....we just might have to step it up a bit.

305cc

Going for a ride in the Jeep

Loving his tubby time!

One of the biggest challenges for us and for most of the Nevus parents are the reactions of the siblings.  Zoie has continued to act out in ways to get attention.  Other parents have seen things like regression in potty training and horrific fits.  All Bruce and I can do is try as hard as we can to make sure Zoie is getting the attention she needs.   I am so happy that she has a wonderful pre-school that allows her to receive just that little bit of extra spotlight that she needs.  As most of you know, Zoie is such a little performer so I am thankful that her teachers allow her to show-off in school just a bit.
On Valentine's Day, I spent the whole day with only her taking her to her school party, where I stayed to help out.  Then we went to visit Mimi for lunch and a trip to the Wildlife Zoo.  I know she loved all the extra attention, I only wish I had it to give all the time.

On another note...in my spare time (haaaahahahahahahahaha)  I am trying to compile a cookbook to benefit Zachary and the many upcoming surgeries he is to endure over the next few years (insert sigh...).  If anyone out there has a few good recipes that you would like to donate, I would be SO THANKFUL!  I am in the process of compiling them and will continue to do so through March 15th.


Good recipes are essential to the success of the cookbook - I would deeply appreciate any recipes you would like to contribute.  Please send your recipes to amoller@cox.net.  Along with the recipe, please include the name that you would like to credit the recipe under (just in case you would like to honor the great cook that gave it to you). 

We've Had Our Fill...

We were a couple of days late due to a runny nose and possibly a little cold but we got back on track today as we did Zac's first fill of 55cc.  It was quite a process though, I'll tell you.  First I have to numb Zac's port.  In order to do that I have to put Lidocaine on it and wrap him in Saran Wrap...yep...you heard me right.  The Lidocaine has to stay put for at least 45 minutes.  So...we have to wrap Saran Wrap around him to keep it in place.  When we were at Dr. Bauer's and we did his fill, they had these cool square pieces of plastic that you could tape over the area but Zac is a little hairy back there so when we pulled it off to start the fill I felt like we almost tipped him off to what was about to happen.  If anyone has any better ideas, please let me know.

While the Lidocaine soaks in, someone has to hold him so that he doesn't tear off his wrap.  That someone is Bruce, because I have to lay out all of our supplies.  A bag of saline, a 60cc plastic syringe, a couple pieces of gauze, alcohol preps, special scissors and a chlora-prep swab.  I have to fill the syringe with the saline and hook up the needle, make sure all the air bubbles are out and that everything stays sterile.  After 45 minutes, we are ready to begin.

Bruce holds Zac in a hug position and we had Zoie stand just behind him on the side that Zac was looking over.  I wipe off the Lidocaine and swab the port with the chlora-prep swab (which I almost forgot to do!), I make sure all the air is out of the tube of the needle and stick the needle into the port...which Zac should not even feel at this point.  Tonight, when I put the needle in, he arched his back a bit but did not cry or even express any discomfort....WHEW...success #1.  Bruce's job is to hold him as still as possible while the needle is in.  My job is to inject the saline and Zoie's job is to entertain which tonight she did in full.  It's the perfect family effort.  So, tonight while I was plunging 55cc of saline into the expander, Zoie was dancing, singing and waving a light-up toy maraca around keeping him entertained...and happy.  I have to make sure to check the skin as we 'expand' to make sure the skin still looks pink and is not over-firm.  Once the saline is in, the needle comes out and we are all done!  Tonight...no crying....success #2.  A total of 175cc....Wow, maybe we can do this :)

To get a general idea of what we are aiming for, this is a 500cc expander which will hold well over that.
For those of you who are visual...700cc is about the size of a D cup boob. LOL

The Great American Girl Meltdown and Other Chicago Tales

Well, it is finally day 14 of our 1st Chicago trip and it's been quite a visit.  After leaving Dr. Bauer's office on Tuesday, we were so happy with Zac's progress.  He was feeling good, had a really good dressing change by nurse Susan, had two of the three drainage tubes taken out and were told everything was looking good.  Unfortunately, for our very good Arizona friends, the Meltons, things did not go as planned.  While we were at Dr. Bauer's office, the Meltons (Adam, Christine, Katie and Joshua), after of series of things gone awry with Josh's experience, were on their way home at long last after 15 days in Chicago only to return two days later!!   The two expanders that Josh had put in two weeks prior needed to come out due to complications from some residual bacteria in the body from an ear infection Joshua had two weeks before his surgery!  The good news is, after they had the expanders removed, Dr. Bauer was also able to remove a great deal of Joshua's nevus.  You can read more about it if you click here.  Thank you for all your prayers and well wishes for this wonderful family.  I saw them all last night and little Josh (Zac's BFF) looks fantastic!

So...what do you do when you are in a strange new town and get clearance from the Dr. to get out and about...?  Well...you explore the town!  We wanted to take in a few of the sites in Chicago while we were here so I asked some of the very nice people who work at our hotel and they said the 'easiest' way to drive to downtown Chicago was not to drive at all!  They said it was easier to take the train from a nearby station and then cab it from the train station.  Evidently this is a nightmare city to drive in between the construction, the rush-hour and all the one-way streets.  The nearest train station was about a 15 minute drive and train fare is only $4.50 per adult-one way.  SO...we packed up the kids...and the gear...and we headed to Shedd Aquarium, via the Metra!  After missing the 10:26 train by just a few minutes we waited at the train station for the next one at 11ish.  I packed Zac in the Baby Bjorn and took Zoie by the hand - Bruce did the heavy lifting with the stroller and diaper bag... and we all loaded on the train.  We found seats right away and enjoyed a 45 minute train ride to Union Station!

Don't be fooled-he LOVED the idea of taking the train.

Merilee, Zac & me

The train ride was great despite a certain 4 1/2 year old moving from seat to seat but after Dad handed over his phone for her to play with, she was pretty good.  Much more relaxing than driving (though probably not much cheaper after you pay for the RT tickets and the cab ride) and highly recommended-but pack light!  The less you have to mess with (dang winter jackets) the simpler it is.  We arrived at Union Station and headed toward the string of cabs waiting outside.  We were hoping for a van-type cab so that the Vance family could fit in with us but alas...all we saw when we went out into the ice-cold outdoors were regular cabs.  So...after freezing for about 3 minutes, we made a quick decision to just take 2 cabs to the aquarium.  Our cab driver's name was David, he was a native of Chicago and he was super-nice.  He and Bruce mainly talked about football the entire way and da Bears playoff game on Sunday.  We arrived safely at the aquarium!  Mission accomplished!  Everyone happy...cold...but very excited!!

With 32,600 animals the Shedd Aquarium is one of the biggest aquariums in the WORLD!

This aquarium was inSheddable (teeheehee).  There were several different reefs all divided by their general habitat.  Shortly after we got there we were all hungry so we went to eat at the BubbleNet Cafe.  We were amazed to find that this cafe offered beautiful views of the city and Lake Michigan!  I also had my first Chicago-style hot dog.  My first thought was WOW it tastes...just like a hot dog with a ton of stuff on it LOL.  For those of you who are as clueless as I was... a Chicago-style hot dog includes a huge hot dog loaded with mustard, relish (which is usually fluorescent green), sport peppers, tomatoes, celery salt, onion and a pickle spear.

Not the best pic of my Chicago-style dog...but you get the idea...

After lunch we headed to the 'Aquatic Show'...well, all I can say was this show was as boring as it's name...DO NOT pay extra to see this.  After about 10 minutes Zoie exclaimed.."Ugh, this is painful...can we go now!"  If you've been to Sea World then this show will not be very impressive.  So, we left before the best part...the end...and went to explore the other fish in the sea.  We saw a ton of cool stuff, coral reefs, frogs, fish, etc. and then it occurred to me that we hadn't seen the Polar Play Zone.  This is the spot for kids to touch and explore sea life.  It was pretty fun down there.  There was a penguin exhibit (even though the penguins were taking the week off to have a spring clean of their habitat).  Kids could literally dress-up in black and white penguin outfits and waddle around in a penguin habitat.  It was hilarious.  Once we got Zoie waddling around, Cali (the Vance's  2 1/2 yr. old) followed along.  It was great!!  As we kept walking we then saw a makeshift submarine for the kids to play in.  They had a blast playing with all the little buttons and sound effects.

Coldest...Coolest..Colder

Waddle like a penguin

Playin' in a yellow submarine

After all that playtime, it was time to leave.  Two babies, two kids with no naps all day...you do the math.  After we successfully caught a van-cab leaving the aquarium, we decided having dinner in downtown Chicago, as fun as it sounded, would simply not be realistic.  So, we decided to head directly to Union Station and then to the hotel.  This time around our cab driver was awful...and that is being nice.  It is now rush hour in Chicago, our cab driver was getting frustrated with the two lanes to our right who were stopped behind a big bus and he put the cab in park...IN THE THIRD LANE TO THE LEFT and said "It okay, you get out here..."  YEAH RIGHT!  With two babies, two kids and a ton of crap...we'll just step out the door into oncoming traffic and attempt to safely get our entire family across the busiest street in Chicago during rush hour!  As soon as he said that, the bus started to move which freed up traffic to move...Bruce said, "Hey, if you wait a minute, the bus is moving..."  Still the driver insisted...so I have Zac strapped to me and a death-grip on Zoie's hand, Merilee has Brooklyn in her carseat carrier with the same grip on Cali and Dustin and Bruce are moving like hell to get both strollers and everything else out of the cab and across the street while cars are honking at us and moving!!!  Nice!!  Jerk!!  Well, when things start to go downhill...they really go fast...  We rushed into the train station (why we were rushing I do not know...LOL-trains literally leave every half-hour or so in the evening).  We got separated from the Vances but since they were in front of us, we just decided to keep moving because surely they were already headed toward the train...right?  We got on the elevator, found the level we needed and then found an info desk, asked what train we needed to get on and successfully got on!  Whew!!  Perfect!!  Except for one thing...hmmm, something was missing...the entire family we came with.  Merilee and I were frantically texting each other back and forth, they evidently did not have the same luck that we did and weren't able to get on the same train as us.  However, since there was another train a mere 20 minutes later, they were able to get onto that one so all in all, the trip was a success!  I loved riding the train!  The train ride home was quiet, with two very tired kiddos.  We reached the train station and got to our car and not one minute later had two beautiful sleeping children in the backseat.  We decided to pick-up soup and sandwiches from Potbelly (a place we have grown to like here) and a Starbucks for me and head home...home here = hotel.

Bruce and I decided that taking the train was so wonderful, that we just may do it all over again the next day.  We knew that convincing the Vances might be a different story though.  On Friday, in a spur of the moment decision, we decided once again to take the train into Chicago and see some sights.  The first stop, The beloved American Girl Store.  This store is ginormous!  There are two floors of nothing but wayyy over-priced but very cute, American Girl dolls.  I wasn't too familiar with them but I was sure that Zoie would enjoy this special store.  It seemed it was the one thing we could do this trip that was especially for her.

These beautiful pictures were taken of my precious little girl right before The Great American Girl Meltdown. I don't even know how to explain what happened after we got to the second floor of the store.  She was whining about wanting every doll she touched, she wouldn't listen to reason or anything we said for that matter...I finally just couldn't take it!  "That is it!"  I said and I just started walking out of the store with the stroller.  Bruce and Zoie following behind...Zoie, now crying and screaming..."I WANT A DOLL!!" over and over again.  The store led to a mall...which led to a food court.  We figured this would be a great time to have lunch and so we sat down and took turns getting our lunches.  During this time, my sweet little girl transformed into a devil-child!!  She continued to have her meltdown, sitting by the elevator instead of with us making ugly faces, pouting and crying.  RIDICULOUS!!  I have never seen her act like this!  Poor kid...out of her element, out of her sleep pattern...out of her mind....  So, we did what any parent would do at this point.  We ignored her and ate our lunch LOL.  After a little while, she decided she was hungry and decided to join us at the table.

After lunch, we decided to take in the view from the John Hancock Observatory.  It had brilliant views of Chicago and a Skybox that was screened in so you could even stand outside to take in the views - but, who the heck wants to do that in January?  The day was pretty foggy so we weren't able to see very far, but the multi-media tour w/ headphones was pretty neat.  Zoie even had her own set of headphones with a kid-friendly version.  The tantrums were still on and off all day but we managed to have a terrific time taking in the views and walking around the exhibit.  It was not a structured tour, which was nice for Zoie because she could basically run all over the place.  They even have a little cafe so we relaxed, got some yummy gelato and spent some time kicking back - 94 stories up in the air.

Lake Shore Drive

As punishment for being so bad I made Zoie wash the windows of the Observatory (hehe)

After our site-seeing, we walked a few blocks to have dinner at Ditka's, Mike Ditka's Steakhouse...man it was cold!  Zac fell asleep and I had Zoie moderately under control so all in all it was a fantastic dinner.  I won't say it's hard to believe we have been here for two whole weeks because it seems like we have been here for a very long time and we are more than ready to go home.  I wish we would've gotten to see a bit more but then again...we have three more trips here this year alone. 

Unfortunately, tomorrow is another day I have been dreading.  It is the day we will go to Dr. Bauer's office and learn how to 'fill' Zac's expanders and pull out drains so that next trip we won't have to stay so long.  Lots of anxiety over this part of the process, but for those of you who are curious what a 'fill' is like....I shall fill you in tomorrow.  I will miss hanging out with Merilee, my nevus mom friend from Montana but I will be so happy to get out of this freezing weather and head home tomorrow....oh, and did I mention Chicago is expecting a snow storm tomorrow....grrrr.

Zoie and my crazy husband in only a hoodie!

Zac thinking - "Get me the hell outta here, it's freezing!"