Tuesday, 18 December 2012

We have movement!

At 8.5 months, Little Madam has discovered how to commando crawl. She is proud as punch about it too. Now, she can get into all those DVD's and XBOX games near the TV....she can scoot into the kitchen when Mummy is busy cooking (danger!) and she can make her way to the garage door when she hears it opening as an indication that her 'Dadda' is home.
The wee tyke is fast claiming her place in our family, and oh what a beloved one it is! Olive is so doted on by everybody, though she seems to have an extremely special place in her Pop's and her brother's hearts. She loves those two and is never low on smiles and fake (sometimes real!) laughs for them.

Her little curl is getting so long it has almost doubled over. She is our very own little TinTin girl and she most definitely lives up to the poem -

There was a little girl
Who had a little curl
Right in the middle of her forehead

When she was good
She was very good
But when she was bad
She was horrid!

Olive has us all wound very lighly around her chubby little fingers and reeled in as close as she can get us. And so she should - she is absolutely one of the cutest babies *I've* ever seen! (Ok, ok, I might be biased, but come on - how can you resist this face?):

Because she is such a charmer, I thought she may have charmed the pants off the dermatologist we went to see last week.
Ahhh no.

She was quite happy to take her clothes off and show him her nevus but when it came to putting said clothing back on, she threw quite an impressive tiny sized tantrum. Thankfully Pop was there to entertain her for me.

It was quite a productive appointment, in comparison to the first one we had for Olive. This time, the derm listened to me and made me feel as important as him in the decisions regarding Olive and her care, and he was happy to discuss all points and issues I had.

Olive is booked for an eye test, to check for lesions on the backs of her eyes. We are not going to have an MRI performed, as she is not displaying any developmental delays or issues and we all feel it is too much for a tiny person to go through (with the sedation and what have you) when it will not change anything.

Olive will continue to have 6 monthly checks with him for the next wee while. She will have her head circumference checked every 3 months by our GP - this is also to keep an eye on any potentially enlarging growths or nevi.

I am fairly certain my baby will be just fine. So far, she is a happy and bouncy wee thing. She is just getting into her solids finally, and seems to have great motor skills. With this new found skill of moving around, she has shown that she is developing just as normally as other children, and I have no doubt she will continue to do so.

Thursday, 1 November 2012

Meet the Pocker.

My poor babies have all had the chicken pox. Horrible illness! We don't want to do that again, that's for sure.
There is a really interesting aspect to Olive having the chicken pox. The other two kids had spots mainly on their torso's, as Google tells me is the most common area for chicken pox distribution. However, Olive had hers mainly on her face. Her face was COVERED in them. Absolutely covered. But her nevus, and not just her bathing trunk one but even the small ones, seemed to 'reject' the chicken pox. If any pox did happen to make their way onto a nevus, it was only on the edge where it met the normal skin.
It is as though, because the chicken pox couldn't develop on the nevus skin, they had to go somewhere, so to her face it was!
I don't know the reasoning behind this, (I was never good at human biology at school!) but on posting this very discussion point in a nevus support group, one person had a very logical answer.

According to the paper this member found on chicken pox and , it says that 'of all the cell types tested, only the melanocytes appeared not infectable by the virus, and CMN are chock full of nevomelanocytes in the dermis, which maybe confers the protective effect on those areas of skin'.

So it appears that the nevus has some really neat traits, and make up as well. Food for thought!

Wednesday, 10 October 2012

Apparently the nevus looks the most dramatic at birth. This makes sense because newborns often take a while to ease into their colouring, so you would imagine it would be just the same for the 'different' skin.
Family and friends all comment (as do Eddie and I!) about how Olive's has definitely lightened. I wondered if that was perhaps more due to the fact that we are just used to it now. So I finally took some more photos (what a terrible mother, I haven't been taking monthy ones :-\) of her nevus, to compare.

This is one taken at 4 days old. The gauze was to protect her skin as it rubbed on her nappy and ripped and bled.
This one is taken today, at just over 6 months old.

Granted, the lighting is different (earliest one was at night with the light on, second one taken in natural light) but I think comparing the two we can easily say it HAS lightened! Especially around her bottom. You can see the hair at the top, and on her thighs, that wasn't there at birth but over the last few weeks especially has gotten very thick and grows in a wee swirl in the centre of her back. You can also see how the fat distribution on her thighs differs side to side. 

You can also see, just how squishy that tiny baby bum is! <3

Saturday, 29 September 2012

Six months.

That's how long Olive has been here.

Where on earth did it go? Seriously. I am enjoying my baby far too much, and somebody has been skipping the clock on us, I am sure of it!

Though in saying that, the last 2-3 weeks have been a nightmare (well, an Olive sized nightmare, not a normal nightmare).

My normally great sleeper hit 5 months and whoever discovered the Five Month Sleep Regression knew their stuff. The child just stopped sleeping. She also started getting so nosy she would refuse feeds if they weren't offered in the comfort of her (MY! But that's a different story) darkened bedroom.

We decided to stay at home and get into a routine. A what? Exactly what Olive thought, too. Figured seeing as we were being hard-arsed parents, we would wipe out the swaddling too - I mean, she was unwrapping those pudgy arms at 5am so she didn't need it anymore. Right?

We had talking and tears, and singing and playing for up to an hour and a half, before Madam would sleep for a mere 45 minutes.

Ok, so that wasn't going to work..next trick.

A sleep site told me to buy a Cocoon wrap - all zippered up that she can't get out of. Waited the weekend for the courier to deliver. Monday morning, it arrives. Yay! Super excited, rip it out of the box, whack it on the baby. Good night, baby!

Baby eats it.


A wonderful friend gave us a Miracle Blanket to try. A nifty thing Baby Houdini wouldn't escape from! First go - Great Success! Asleep in 5 mins, slept for 2.5 hours! Second go - Fail. Awake for 2.5 hours, slept for 5 mins!

*Sigh*. My Good Baby was behaving like somebody else's Naughty Baby. (I don't breed Naughty Children, just so you know).

And here we are. Persisting with the Miracle Blanket, and still pretending that the Angel upstairs (who has taken 4, yes, FOUR hours to go to sleep today) is a Good Baby.

Well....actually...I lie. We aren't pretending - look at her!

Wednesday, 5 September 2012

This here is the proud wee face of a certain somebody who can now roll from her back to her tummy....constantly. AND even get her own little arms out from under her belly (after lots of dolphin diving, mind you!).

Olive is almost half a year old. Six months. SIX months! Didn't I only just have her? These months really are flying by. We are onto the Bigger Baby stage!

She is already almost eating real food..we did try her on some banana, but that was a fail. She swallowed the first wee bit, with a perplexed look on her face and then proceeded to gag and vomit it back up. Charming.

She is still sleeping well, but she can be a toerag in the daytime and sometimes misses all day naps. Too nosy, this girl is!

She is very vocal, even spouting off a load of 'Mum-mum', 'Dad-dad' and 'bubba'.

A Mummy's Girl, this one. She doesn't like it when Aunty picks her up from her bed. The bottom lip drops and she looks around for her Mum. When I take her, she tells Aunty off in her 'ah did did did bbbbb' language. She is bolshy!

Everything goes in the mouth - hands, toys, blankets, Mummy's hair. There are no sneaky visits at our house - Olive always makes sure to mark your shoulder with either puke or slobber to makes sure everyone know's you have been to see her.

Along with all these new and exciting things, our first 6 monthly check with the paediatric dermatologist is approaching also. And oh how her wee bod has changed! There is a very fine layer of blonde hair covering the top half of her BTN now, as well as the bit above her bottom. She has so many satellites, I haven't sat down to count but my guess is between 20-30 (none of which were there are birth, remember!) and you can see the beginnings of many more coming through. She is definitely very sensitive on her nevus - when she has done a poo and it is touching the hair, she arches her back and cries. It might just be that it tickles or something, but it definitely annoys her!

Her nevus on her fontanelle has such thick hair now! We affectionately call it her tiny wig, after a checkout operator at the supermarket asked if it was real....

It seems like such an age ago that I was in tears and asking for advice on how to cure her bleeding bottom and lesions on her back. I feel we have come a long way, and the way we speak of her nevus now is very much fact, and not so much emotionally charged.

I don't want to wish time away, because I am enjoying her so SO much, but I am really excited and anxious to see what the future holds for my beautiful wee babe.

Friday, 10 August 2012

Isn't it funny how emotions hit you sometimes? Just out of the blue, you can suddenly be feeling something you didn't even know was there.
I thought I had 'accepted' Oli's condition, and that I had had my big cry and it was going to be mostly smiles from here on in. But this morning, I realised that isn't quite the case.
New satellites pop up often. I find them fascinating. One minute, there is clear skin, next morning there is a new wee spot. As I have said, Olive has lots on her legs now (probably over 20) so they don't bother me as such. Then this morning, I discovered one on her chest, right by her teeny tiny baby nipple. This doesn't matter. Right? In the big scheme of things, it doesn't and perhaps it is just the fact I am breastfeeding her and that was my automatic thought - now she will have spotty breasts too!
Then I found one on the back of her neck....then one on her cheek....then about 5 new ones on the soles of her itty bitty feet (My gosh, those feet are gorgeous. The fattest stubbiest wee pudgy toes you ever did see! I could eat them up!) that weren't there the other night!

That's when I started sobbing. One day, she will most likely look at these photo's of herself, with no recollection of the time before she had these 'marks' all over her body. This point in time, will make her look so different to what she will be in future years. I felt so silly crying over this, as I don't think I think of Olive and her nevus as a sad story as such. It took me by surprise how grief stricken I was, about my bub being the way she is.
I don't want to cry over this. I don't want it to be sad. I don't want Olive to be sad about it, and I don't want Jaxon and Meisha growing up feeling sorry for their sister.
But I also don't want Olive to have a life where people are rude, and stare because she may look a bit different. I don't want her to have to explain her appearance to anybody. Ever. I said it in my first post, and have said this since Day 1 - all Eddie and I want for our children is to be themselves, and to be proud of who that person is, and to ultimately be happy.

I have no doubt Olive will be everything I want, and more. She already is! But man, maybe these bumps in the road might be harder than I thought.

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 older....am 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......