Friday, 27 July 2012

Eddie and I decided right at the beginning that we didn't want to put photo's of Olive's nevus on Facebook. I think this was more to do with the fact that Facebook changes their privacy settings all the time with no notice etc, and we felt vulnerable. We are hesitant because we are afraid to have our photo's of Oli stolen by somebody and used for their own uses. We did/do not want to exploit Olive in any way and put her on show, so to speak.

We also decided that the more open we are about Olive and her nevus, the more open and comfortable she will be as she grows up. This is her 'normal' and our main wish for her is for her to love herself and be comfortable and proud to be who she is.

We also decided that the more information and awareness there is about GCMN, the more accepting and understanding people will be. And thanks to other GCMN owners having their photo's on the internet, we were able to find information we needed when Olive was born.

So, after much discussion, we have decided to post a photo. The benefits outweigh the negative in our opinion. The photo above shows her back, which is her bathing trunk nevus. You can see 2 of the 4 smaller ones on her scalp, as well as the one on her arm, the one on her leg, and the multiple satellites on her legs.

When we are changing and undressing/dressing Olive daily, we notice wee changes but the most effective way to refer back and compare, is with photo's. As well as taking loads of our own (anyone else got 3000 odd baby photos on their hard drive? haha), the hospital are doing medical ones every 6 months.

Sunday, 22 July 2012

I read somewhere (possibly in the support group?) that the nevus looks it's worst, or most dramatic, at birth. In Olive's case, this is most definitely conducive. When she was first born it was very very dark and had 2 spots, one on each side, that were like raised nodules, and had hair from them. Now, at almost 16 weeks old, they have both disappeared.
It could be because I see it every day, so I am used to it now, but it does seem lighter in colour. Though this could also be that her skin tone has changed from that more red sort of newborn colour to how it is now.
She has also gained some thick hair just at the top of her wee bum, as well as a good coverage of it (but thinner and less of it) near the top, and on her thighs. The hair on the one on her arm has grown longer, and the one on her fontanelle is very thick!

She always gets comments on her cool hairdo, and it's funny because I always feel as though I need to explain WHY it is cool....but really, people wouldn't know unless I told them! I sometimes wonder what people think, in public, when I am carrying her when they can see her spotty head. Do they assume it is birthmarks? Bruises? It doesn't worry me, but it does interest me.

I tend to forget sometimes that it can be quite shocking to see her BTN for the first time, because I am so used to it now! I love the interest people take in her 'condition', and how eager people are to know more. I find myself rambling on too much sometimes, but it is so easy too - I mean, how can you not love this face.....

Wednesday, 11 July 2012

A post about the baby, not her 'condition'....

Doesn't time fly when you are having fun? With Olive being my last baby, I am absolutely dedicated to enjoying every minute of her 'babyness'...but my gosh, it goes fast! Already we are past the newborn stage. We have progressed from bassinet to cot. We have started to tilt the pram to a more sitting position as she is getting too nosy. She eats her hands like a starving child. Finds the TV no matter where she is in the room, and watches it with the same intent look as when her Dad watches Mythbusters. She no longer wants to be rocked to sleep - that's for teeny babies apparently, and it doesn't work for such a Big Girl anymore!

My baby is growing up already. Yes, she is still so tiny, but before I know it, she is going to be a talking back, giggling, chocolate eating, playground climbing, Barbie playing 4 year old like her sister. Who is going to be 5 in a few short weeks, and going to school.

Eeeeek!! Somebody stop the clock!

Friday, 6 July 2012

When we were first told Olive had a GCMN, the doctors told us they didn't know too much about it, because it was rare. We had lots of differing advice and suggestions on how to care for her, and what the future holds. Every doctor we have seen has said straight off the bat, that surgery is near impossible. I know for a fact this is not the case, as I have emailed a well renowned plastic surgeon in Chicago with pictures of Olives, for an email consultation. This man does lots of surgeries to remove CMN's and is the most experienced in the world in what he does.
He said that Olive would have a great chance of success in removal of her bathing trunk nevus (BTN), and he was kind enough to send me some powerpoint presentations on skin expanders (gosh they look scary!).

While I appreciate immensely the time he took to reply to my questions, both Eddie and I feel that it isn't our place to alter Olive's body in such a huge way. (This isn't to say I disagree with other parents making that decision, I am talking solely for Eddie and I, as parents to OUR daughter). At this stage, we will not be pursuing surgery unless it is for medical/health reasons. I feel Olive was born this way for a reason. Already she has taught me so much more in such a short time, as a Mother, and as a person. To change or remove that feels as if we are saying it is not OK, and I want Olive to grow up thinking of it more as a positive than a negative.

In saying all of that, we are still learning as well. I am so glad she is little while this is all new to me, as I don't want her to see me upset about things which on the whole, just don't matter. For instance, the other day I found her first satellite on her face and burst into tears! I had this silly 'hope' that her face would stay clear. I also cried when I realised her back was getting hairier. For some reason the hair seems the worst bit to me - not the dramatically different skin colour, but the hair. It doesn't even matter! She is the most beautiful girl ever to me, and always will be - spots or not! It all just still takes some getting used to, and as I said, i am so thankful she is a baby while all these changes are taking place.

Olive's nevus on her back has no subcutaneous fat layer...that is no fat layer under the skin. It is very very thin, and feels as though it may tear easily. I am wondering how careful she will need to be when she is guessing she won't ever get a smack on the bum! ;-P

Wednesday, 4 July 2012

So Miss Olive is 3 months now. I wanted to kick off the blog with her story up until now.
Eddie and I were gifted with two beautiful children - a boy, Jaxon, who is 6 and a girl, Meisha, who is almost 5. Everybody told us we were blessed with the pigeon pair and 'you don't want another!' But we did. I always wanted 3 children, so we decided to have our last baby.
I discovered I was pregnant on August 1st 2011 - the day before Eddie's birthday. So for his birthday I gave him a card, and signed it from 'Kizzie, Jaxon, Meisha and Baby #3 Due April 12'. He was absolutely stoked! We have stuck the card in Olive's baby book.

The pregnancy went OK - as well as a pregnancy does when you don't particularly enjoy being pregnant. Got the heartburn, the sciatica, the rib pains, the tiredness, morning sickness, grumpiness, along with some bonus tachycardia. But out of all 3 pregnancies, Olive's was the most enjoyable.
We found out at our 20 week scan we were having another girl and from then on, she was affectionately nicknamed Chinamoon Berry. This was her name throughout the entire pregnancy, and she even has a little suit with it printed on the front from her Aunty Amz.
I had a planned cesarean section with Olive, due to 2 previous cesars. It was scheduled for April 3 2012 at 38weeks 5days, which is a bit earlier than when I had the other two.
The day before, I had still had this hideous cough that I hadn't managed to get rid of. I was so worried they would bump me another week because of it, so went to the hospital to ask the obstetrician. After a lot of muck about, we were told to just come in the next morning as planned, but that we may also get bumped because they were so full up! Nooooo!

The next morning, we did as planned and turned up at 7.30am. We were nervous and excited to meet our new little baby but worried we would get bumped to another day.

We went in and start getting prepped almost immediately. Today WAS the day! I had Mum there as an extra support person (Mum is a midwife - I can’t have a baby without Mum!). After what seemed like a lot of mucking around, I finally got wheeled into theatre and they started the process.
At 10.06am, our baby was pulled from inside me and held up for me to see. IT WAS A GIRL!! She didn’t sqwark like I expected her to, and because of the drugs etc I was in a bit of shock…..
Mum and my midwife took her over to the table and her apgars were 9 and then 10. She had some odd marks on her head so Mum called the paediatrician. Three minutes later my baby crashed. She stopped breathing and went blue, floppy and unresponsive. Her heart rate dropped, and they started resuscitating her. An urgent call was put through to the paed.

As they were resuscitating her, they turned her over and saw what looked like tumours all over her tiny back. Both Mum and my midwife thought she had crashed because of this, and that whatever was on her back was attacking her body, and killing her. With the help of the paeds they managed to stabilise her and clean off the vernix (there was a lot!) for a better look. Baby was taken to SCBU, with no skin to skin contact between her and I, and I was taken to recovery.
I lay in recovery for about half an hour, with empty arms. I wanted my baby. I made Eddie and Mum go with our little girl and my midwife, God bless her, stayed with me and held my hand the entire time. She tried to distract me with silly talk and it worked for the most part….but all I wanted was to meet my baby girl.
Eventually, they took me back to my room and on the way they wheeled me into SCBU to meet this wee precious. She was lying in an incubator with no-one holding her or touching her, just loads of people staring at her. In a room full of tiny and sick babies, she was definitely the healthiest looking - she was 8lb15oz!
The consultant informed me she had a Giant Congenital Melynocytic Nevus…a bathing trunk nevus.
This meant nothing to me at the time, I was just so so thankful she was alive and breathing. Apparently she had crashed simply because of her delivery - it was nothing to do with her 'condition'. She was handed to me and I attempted to feed her but with little success.They soon wheeled me back to my room where I waited for someone to bring me my baby.

Five hours (and a lot of urging from Eddie and I) later, my new, third love was brought to me. The relief I felt when I finally held my little angel is inexplicable. I was so worried she wouldn't bond with me, because it had been so long. But if anything, it was the opposite. She knew right away who her Mummy was, and how fiercely I wanted to protect her. From that moment on, she would turn her head whenever she heard me...she would calm as soon as she heard my voice. Even now, if she spots me across the room, she watches to make sure I am looking at her!

I managed to get feeding established soon after birth, and my milk came in on day 2.
When the drugs had worn off a bit and I was a bit more coherent, the consultant came to speak to us. He told us our daughter had a Giant Congenital Melanocytic Nevus in her bathing trunk area. It is basically a giant birthmark. It covers about 70-80% of her back, her wee bottom and wraps around her front. She has 4 scalp nevus as well as one on her arm and one on her leg. Since her birth she has had smaller ones, known as satellites, appear on her legs, and just yesterday I found 2 on her face, and today 2 on her arm.

Sometime in the first trimester, when the melanin was being distributed, it basically went a bit hyperactive in one area. There is no rhyme or reason as to how it happens, it just does. I like to think of this part as a tiny bit of magic, sprinkling itself through my wee girl's body.

She is a rare 1 in 500,000 who have the Giant nevus. The doctors here do not know a lot about it, and a lot of the advice they gave us in the early days was guesswork on their behalf. I think I am as educated, if not more, than any of the 10 plus doctors who came to see Olive for 'medical research' when she was born!
It shouldn't affect her everyday life. She has a slight increased risk of melanoma, but we are often told that risk is exagerated, and isn't as high as thought.
I have had my cry, about my girl not being as I expected, but I am so thankful that she is ok...that she is alive and kicking and that this is effectively 'just cosmetic'. That term does undermine it, I feel in a way. Because this does change Olive's path. It makes it that wee bit harder than any of ours. Eddie and I hope to raise her just as the other two, and with the mindset that it is just part of her, but not what defines her.
We have amazing (and I mean AMAZING) friends and a family who are as protective and loving to our children as us, and who I know will be a big input into Olive's and her brother and sister's upbringing.

Olive was given her name from a list of about 25 possible names. We went through each one, and felt she deserved a strong name, because of her rough start. As soon as we stopped on Olive, we knew it was the one. She was given Marie, in honour of my beautiful Nana Marie, who passed when I was pregnant with Olive.

So, in a long winded nut shell, that brings us to now. Olive is 3 months old, and thriving. She is a happy and healthy wee girl. She sleeps between 8 and 11 hours at night (bless her little cotton socks!). She is smiling, and lifting her head well and is even on the verge of laughing!

As for the medical side, we have seen the paediatrician and the paediatric dermatologist. We will see the paed derm every 6 months for monitoring to make sure Olive is progressing and that there are no changes to her nevus.

So this is her journey......