Tuesday, 6 February 2018

Twenty eighteen is well underway - the school holidays are drawing to an end,  and with this marks some Firsts we've decided to repeat.
School starts tomorrow and for various reasons, we made the decision with the girls input to change their school this year. It is Meisha's last year at primary and Olive will be year 2.

One of the many reasons for the change, is Olive has been suffering from anxiety. Changing her school and throwing her in a whole new environment may seem counteractive to dealing with this,  but for numerous reasons, I feel the new school is actually better equipped in their approach to helping kids with issues such as these. I'm hoping by changing the girls now, while Olive still has Meisha there for support for another year, that we can tackle this head on before it becomes debilitating for her. As you all know, I myself suffer from anxiety and at points it has really affected my day to day life. I hate seeing her go through this and knowing I can't take it away for her.

Being a child, it's hard for Olive to understand what's happening in her little body. She gets a sore tummy when she's anxious or worried which leads to her getting extremely upset. For her, it is very much physical and she finds it difficult to voice her concerns. We try our best to talk through it and come up with plans with her to make things easier - so far we seem to taking small steps of progress. A lot of the time, even talking about school makes her tearful and the stomach pains start.

For a long time, I couldn't talk about Olive's birth without crying. I've talked about it plenty on here, and often I wrote posts with tears streaming down my face. The emotion that comes with such a massive event is life-changing, and sometimes all too consuming. Now I can talk about it easily, though I don't often need to these days. I've told that story many, many times now and each time I tell someone new, some of the dramatics of the event gets chipped away. The memories are etched into my mind - forever having their place as one of the hardest times of my life. But the memories aren't as emotionally charged now. Now they're facts - something that happened, that occurred, but now the emotional charge has been shifted.
I've learnt to speak openly about Olive - I will answer any question or query, so long as I know it comes with good intentions.

Sometimes though, without warning, something can throw you straight back into that moment and everything comes flooding back.

Today Mum brought over my pregnancy notes from my midwife. I had the most incredible midwife. She is an old friend of the family. In fact, she actually delivered me when I was born! I had her with all three of my pregnancies, and I am so grateful that I did. She was wonderful with all of my births, but when Olive came along, she was just amazing. Because of her ties with our family already, I felt so comfortable with her and trusted her to take the utmost care of Olive and I. Which she did.

She has retired now, and has returned notes to her women who she looked after. I'd read the hospital printout notes of Olive's birth in the past but they were very factual - date, time, weight etc. These handwritten notes were the true insight into what not only Eddie and I, but all the staff who looked after us went through that day as well.

As I've said before, none of our doctors and nurses had seen a giant congenital melanocytic nevus before, so this was all new to them too. Reading through my notes made tears fill my eyes, as it brought back the memories of the day my darling daughter was born.

Her notes are just as full as Jaxon and Meisha's are from their births. But while theirs are filled with entries of how feeding was going and how I am feeling, Olive's are filled with concerns. Almost every entry contained an observation of  'birthmarks',  'pigmentation', congenital melanocytic nevus'. Each one documenting the next step in diagnosis and testing. Referrals for ultrasounds and appointments with dermatologists, paediatricians, requests for blood screening to test for chromosomal disorders and deficiencies.

There is a multitude of entries from different paediatric registrars and consultants, nurses and midwives. There is a quickly scrawled entry from when Olive was merely an hour and a half old requesting written consent for them to take medical photographs. Eddie and I realised as we read through this that we've never seen these photos. Some of the first photos taken in our daughters life and we've never seen them.

There are notes about how Olive had blood in her nappy from skin torn from the thick, sticky meconium - she wasn't even a day old!

I cant help thinking that while all these concerned comments, entries, notes were being written in my chart, what they presented to my face made me feel differently.
While Eddie and I were afraid, the staff caring for Olive and I must have been also. A vulnerable new baby comes into the world on your watch and you've never even heard of the condition she has, let alone seen it and cared for somebody with it. Yet, each one of those people were reassuring and friendly. They took care of my baby and I with respect and professionalism. They all told me I had a beautiful daughter, and whether they truthfully saw Olive's pure and absolute beauty, and don't just say that to every new mother, I'll never know. But I am thankful to them all for treating us just as another mother and baby, and not making me feel like 'the woman in room 101 with the birthmark baby'.

There is one note that caught my eye. It was written the day of her birth at 11am. Olive was born at 10.06am so she was not quite an hour old yet. It quickly (doctors scrawl!) outlines the issues she presented (her 'skin lesions' and her breathing difficulties) and underneath is the word Plan, underlined. There are 3 things on the list.

1.  Photographer and get dermatology opinion
2. HUSS & USS spine
3. Normalise and feed.

Normalise and feed. This part actually made me upset reading through my notes, and I couldn't stop crying for the rest of the read. It doesn't make me sad upset though. Its more of a 'grateful upset'. The doctor who wrote this was the paediatric consultant who was working the time of Olive's birth. I'm not going to name him here, but he was called to theatre to look at Olive's skin. En route to theatre, he was called again due to respiratory distress from Olive at just 3 minutes old.

This man was the first person I ever heard say the term Giant Congenital Melanocytic Nevus. He was the person who, amongst a whole lot of chaos and fear, brought light to our situation by telling us what he knew of the condition and by telling us our brand new baby would be just fine.

And his entry into my charts were telling anyone else who read it how to deal with us - normalise it. Because, while IT (the condition) wasn't normal, this little baby WAS normal. She was as normal as the baby in the next room and the next. Sure she may have looked different, but hey! Don't we all?

I feel forever grateful to this doctor. Our lives could have certainly taken a different turn had we encountered someone not so calm and accepting that day.

I'd like to go and visit him soon and introduce him to nearly 6-year-old Olive. And tell him thank you, for all he did for us. And hopefully, show him a little girl who is happy and settled at her new school.

No comments:

Post a Comment