Surgery.

Right after Maia was born she was laying on me, the nurse was wiping her off and I noticed she had a spot on her head. It was almost a perfect oval and looked like pink sand paper, with little white pebbles in it. She had hair all around but not on that spot.  The nurses had no idea what it was and told me the pediatrician would take a look at it.   We didn't see the pediatrician until late that evening, she had no clue what was on her head and said she would go home and research it.  I was freaking out, I didn't care what it was I just wanted her to be ok.  I  let my mind wander and cried almost all night.  The next day she came back and told us it might be a giant nevi (mole).  She said it wasn't anything that would affect her health.  That was the biggest relief for us! 
At her first Dr appt with Dr. Chang our pediatrician, I wanted to hear what he had to say about it.  Surely after all his years in practice he had seen something like this before.  Right?  Nope.  He didn't say a word....... I almost burst out in tears right in that little room.  He checked her body over looking for 'lesions' that he said sometimes go along with that large of a spot on her head.  Checked her spine, the length of her legs and looked at her eyes for a long time.    That worried me even more!  I had so many questions but nothing could come out of my mouth,  I just had a huge lump in my throat.  He just said I needed to take her to a dermatologist.  Nothing more.  Looking back I know exactly what he was thinking, I just think he didn't want to worry me.  I went home and started googling the heck out of everything I could think of related to her head and these 'lesions' on the body.  I came across the word "nevus sebaceous".  I knew that was it!  Wikipedia described and explained it perfectly, the exact birthmark on her head.  The more and more I read, the bigger the lump in my throat got.  I kept seeing the words: mental retardation, seizures, autism, brain or spine lesions, skeletal malformations, it seemed to go on and on....I knew in my heart she was fine but I just couldn't stop reading.  The more I read the more I freaked out.  Every time I would hold her I would just feel at peace. So I decided I needed to STOP reading! A small percentage of patients with a nevus sebaceous have this:
                                                                  
 Linear Nevus Sebaceous Syndrome (LNSS) is a rare disorder that is diagnosed when a skin condition called nevus sebaceous happens together with developmental delays, seizures, and sometimes other abnormalities. 

We made an appointment with a dermatologist at Phoenix Children's Hospital and took Maia in to see her at 5 weeks.  She also had no explanation for me and had about 6 other dermatologists come in and look at her.  My heart sank as they took a few pictures of it, measured it and looked at it with a special little tool.  We scheduled a biopsy for a few weeks later.  John and I took her in at 8 weeks, nervous as ever to have the biopsy done.  I prayed and prayed and prayed that she would do good through it.  Luckily she was sleeping so they wrapped her up like a burrito and gave her a shot right in her head.  She wiggled for a few seconds, took a pacifier and fell back asleep.  The little procedure didn't take long but it was sad to watch them take a little piece from her precious little bald spot.    Such a blessing she slept right through it!  2 days later and we had a diagnosis.  Nevus Sebaceous. It needs to be removed.  It has a small percentage of turning cancerous.  It is flat and very smooth now but when she goes through puberty it will turn super lumpy with wart like growths all over.   There is no way to tell if she has LNSS but to just wait and see in her first few years of life....
 We were referred to a plastic surgeon and met with her when Maia was 12 weeks.  She gave us a few options.  1- do surgery now, it would take 2-3 surgeries.  Her skull is still growing so she has a lot of extra skin to stretch it shut once removed little by little.  She is young and resilient and wont remember a thing.  Plus she can't pick at the stitches.  2- wait until she is older and do the surgery before starting kindergarten.  Waiting this long will mean her skin wont have as much give to it and tissue expander's will need to be put in first before the surgery.  Me, loving Google, googled tissue expander's.  I cried and cried and cried.  Those poor little children.  It doesn't hurt it just looks scary and painful.  Or 3- don't remove at all and wait to see if it turns cancerous.  I didn't like any of the options.  We love our beautiful little girl and love her "bald spot" (as the boys call it:))  I wanted to wait until she was old enough to make the decision for herself.  Of course she would want to have it removed!  her bald spot is growing with her head as she grows and by the time she has an adult size head it would be most the side of her head.  No hair grows there and never will!  What girl wants to be bald on one side of her head?  John also reminded me that being in Jr high or high school and having to do tissue expander's for months would not be fun.  But still, I didn't want to do surgery.  We decided it would be best to do it now.  Luckily Dr. Singh was booked out for 5 weeks, so I had a little time to prepare myself emotionally.
   May 5, 2012.  That was the day we took sweet baby girl to St. Joe's for her surgery.  I couldn't feed her for 4 hours prior and she was mad!  They finally took her back and an hour and a half later, the Dr came out.  She said everything went well and I could go back and see her.  She was so out of it and was starving!  I almost fainted at the sight of her surgery.  I didn't realize how big the cut would be but they were able to take off about 75%.  She healed so well and never needed any pain meds or anything.  She will only need one more surgery to remove the rest!  Sadly that day is coming fast but at least I know what to expect.  She is such a beautiful girl. I love her so much. Here are some pics of her journey!

                                          a few days old

one day after the biopsy

                                                                   8 weeks and beautiful!

                                                                      12 weeks, biopsy healed

                                                         in the parking lot before surgery

They marked her head just to be sure what to remove :)

                                                           

They pricked her feet 5 times before they got an IV in

                                                          So happy to see my girl!

Only one person was allowed in recovery and that was me since I needed to nurse her.  I asked the nurse if john could come back and she said no.  I purposely left my diaper bag with John hoping that would be my excuse.  It worked :) hehe sneaky me.  I was soooo happy he can back to walk her out with me....and so was he!

                                                          60 stitches....that I could count.  We were in recovery for about 20 minutes and then they told us we could go home.....Uh what?!  They didn't bandage it or anything, just sent us on our way.  It was a little crazy walking out the doors with such a tiny baby and all of the people in the waiting room staring because she had this big wound on her head. 

                                           Look how happy she was in the car after, I had to feed her one more time.  They pulled her skin so tight it gave her one slanty eye! 

                                                                           Ouch

                                                            One week after

                                                                    4 weeks after