And he’s off…

Just like that, our tiny 1lb baby bird is away to his first day of Nursery.

Such a bittersweet moment. On the one hand I don’t ever want to let him go. My head is full of a thousand worries and what ifs.

Then on the other, I know just how lucky we are to be getting days like this with him. When I think back to the days when his ‘firsts’ consisted of milestones we’d never even imagined. First brain scan, first surgery, first hour off the ventilator. The first time we saw him, tiny and see through and covered in lines and tubes. We never dared dream of days like today.

And yet there he goes, as eager and fearless as ever, reminding us to never doubt him for a second ❀

Kangaroo Care Awareness Day

Today is #KangarooCareAwarenessDay

I’m sure most people will have heard of ‘kangaroo care’ for premature babies in the neonatal unit. When baby is placed inside their parents top for skin-to-skin contact. It has incredible benefits for parents & baby such as regulating babys temperature and boosting milk supply.

Unfortunately though its not always possible for baby to come out of their incubator for kangaroo cuddles, so I wanted to share some information about ‘containment holding’.

As many of you know by the time Arlo was 3 months old we’d only been able to hold him 3 times. He was too unstable the majority of the time and at one point he was so poorly we could only change his nappy every 8 hours because he found being moved so distressing he would immediately drop his heart rate and saturation levels through the floor.

One thing we could do though was containment holding. This is done by placing one hand around baby’s head and the other around their lower half and just holding them with still touch. The picture here is Daddy & Arlo enjoying some Containment Holding on day 68.

Touch is the largest sensory organ and the first to develop in utero. Often for babys in the NICU their first experience of touch is through uncomfortable and sometimes painful procedures so containment holding is a brilliant way of introducing some positive nurturing touch. It can help calm, comfort and reassure baby, as well as promoting bonding and giving parents a sense of involvement in their babys care.

One of the hardest things about having a baby in the neonatal unit is the feeling of total helplessness, of thinking there’s nothing you can do to help your baby. Containment holding really helped us feel involved and like we were doing something to support and reassure him, until he was finally well enough for us to have those long awaited cuddles πŸ’œ

#kangaroocare #containmentholding #prematurityawareness #prematurebaby #familyintergratedcare

Neonatal Mental Health Awareness Week – Day 3

Day 3

Today I’d like to share a brilliant petition set up by fellow preemie parent, and all round champion for maternal mental health, Danielle of An Ordinary Mummy and Motherhood For Change.

Like many of us Danielle didn’t get a PTSD diagnosis until her twin boys had been home for some time and it’d had started to have a significant affect on her daily life. In her own words ‘I have begun a petition with the intention of lobbying the government to offer the PTSD questionnaire at babies six and twelve month checks for all neonatal parents. We could save so many families so many years of mental ill health with one simple questionnaire. Of course there is more to be done, the postcode lottery of PTSD treatment must be addressed, EMDR isn’t offered to everyone and some are simply given anti depressants and no counselling.

Additional support needs to be provided on units and more importantly check ups for 3-6 months postnatal. The task is monumental but I truly believe that each small step can help pave the way, each story shared can break down walls of silence and build up awareness and every voice heard can help empower others to seek help and perhaps make their own shout for change. Once you are a preemie parent you are always a preemie parent. I wear my scars and my trauma like a badge of honour, it is a constant reminder that our children are miracles, that life is precious and that we are here only once and what we do to invoke change to better the lives of others and change the things which failed us are the things which truly matter.’

You can find the petition here:

Petition

Neonatal Mental Health Awareness Week – Day 2

#NICUMHAW Day 2

I know I said yesterday that todays post would be more about my own symptoms leading up to diagnosis but, as I suspected, I did see a few (hopefully well meaning) comments yesterday that just really hammered it home to me how misunderstood Post Traumatic Stress Disorder is. So I want to clear a few thing up and hopefully give a better understanding of PTSD.

PTSD is NOT about feeling sorry for yourself. Studies have proven that trauma causes neurochemical changes and people suffering from ptsd have an altered brain anatomy and function.

PTSD will NOT be cured by thinking more positively. When you tell someone that is suffering with a proven psychiatric disorder that they just need to respond better and choose to ‘rise from the pain’ πŸ™„ all you do is make someone who is already suffering feel like shit, and show how astoundingly ignorent you are. That’s not to say I don’t think self care and reframing things in a positive way aren’t important or useful, I really do, but there is a huge difference between this and shaming people who are already deeply struggling. I know this type of analogy is used a lot but seriously, would you tell someone with 2 broken legs that they just need to get a grip, stop fannying about with their crutches that are sooo obviously just for attention anyway and go for a jog!? It’s all well and good pointing out that everyone has their struggles, and its true they do, but if you’re capable of recognising that then surely you’re capable of showing a bit of compassion to someone who is struggling too?!

PTSD is PHYSICAL. Signs of PTSD can range from flashbacks to nightmares, panic attacks to eating disorders, cognitive delays to lowered verbal memory capacity (I suffer BADLY with these last two, imagine trying to hold a conversation when it feels like all of your thoughts and ideas and words have fallen right out of your head). Teeth grinding, swallowing problems, numbness/tingling in your face/arms/legs etc, heart palpations (terrifying, this one & the numbness/tingling recently came back for me and I hate it). Gastrointestinal problems, problems with your menstrual cycle, extreme mood swings, extreme reactions, hallucinations, hypervigilance, disassociation. I could go on. I suffer/have suffered from every single one of these.

PTSD is INVASIVE. I’ve been told on numerous occasions that I just need to ‘let go of the past’ which is particularly ironic because it feels much more like it is the past that won’t let go of me. Flashbacks, anxiety attacks and any number of the other symptoms mentioned above can spring from nowhere, even on a ‘good day’ the most unexpected thing can become a trigger. Its always there, just waiting to creep up and maul you like a rabid dog, when you least expect it.

PTSD is EXHAUSTING. It’s debilitating and painful and just all consuming.

It’s also really really important we start talking about it more. Untreated post-traumatic stress disorder can have a devastating effect for both those who have the condition and their loved ones. It not only affects relationships with your family, friends and others, it can also cause more serious health problems over time and I passionately believe that a huge factor in the affect trauma has on us is the isolation it causes. We need to be encouraging people to talk, no one should be in fear of admitting they need help and support. Kindness and compassion are fundamental to recovery, without them even taking the first step towards help can seem impossible.

Neonatal Mental Health Awareness Week – Day 1

Today is day 1 of the very first Neonatal Mental Health Awareness Week. As some of you will know I was diagnosed with Post Traumatic Stress Disorder and Anxiety Disorder following Arlo’s discharge from NICU. I’ve touched on it frequently in my posts but I’ve never really talked about my PTSD in much detail before. I want to change that this week, so I’ve promised myself I’ll write a post a day for the next 7 days, and if it helps even 1 person that’s suffering, then that’ll be good enough for me.

I’ve always wanted to talk more openly about PTSD but it’s hard. I don’t think I really appreciated the stigma surrounding mental health issues until I had a breakdown and found that I couldn’t actually bring myself to tell people what was happening, I didn’t know how to explain it and I quite quickly had some negative responses too and that had a pretty awful affect on me and made it hard to open up again (talking of stigma, I’ve actually been hovering over the post button on this since 7am, its now 10am, because I’m genuinely quite frightened of the response it might get). It’s not like having most physical injuries where something significant happens, you’re hurt, and then the acute bit is over and you’re recovering. I didn’t wake up one day having a mental breakdown. It was more of a snowball of symptoms that built up and up and up, until it eventually just overwhelmed and consumed me.

Then when the fog finally start to lift a little I felt awkward, ashamed, embarrassed and detached. So many people would say things like ‘but he’s fine now’ or ‘everyone has problems, lots of people have it much worse’ and while I think they were well meaning, all it did was compound the sense of guilt and shame that I already carried and left me feeling like being broken by my own trauma was selfish and self indulgent. Plus at times my behaviour WAS embarrassing and abnormal. So I didn’t tell people. I couldn’t. I’m certain there will be friends, and even family, reading this who had or have no idea the extent of my mental health collapse, and my ongoing mental health issues. Its hardly surprising though, I didn’t realise myself at first…

I think looking back I can see early signs of a problem when Arlo was still in nicu. I became a bit obsessed with cleaning the breast pump, convinced a stray germ would eventually kill him. I threw over 100 bottles of expressed milk away because I was certain they were contaminated.

The day he came home I had a complete freak out when his outreach nurse left and we were on our own. I felt so overwhelmed by being alone with him and his various medical needs/equipment. All I could see was danger. I didn’t want people anywhere near him because I thought he’d catch a virus and die. I hated making up bottles and would throw gallons of formula away because in the second between pouring the water in and putting the lid on I’d be convinced it’d become ‘contaminated’ with germs. I think this played a huge part in my drive to get him breastfeeding, and even then I used to thoroughly wash my boobs before every feed! Ridiculous 😐

Dummies were another huge source of anxiety. One would only have to fall out of his mouth for a second and we’d take it to sterilise. I’m surprised they didn’t all melt! The number of emotional outbursts I had because I was sure he’d been given a ‘dirty’ dummy, it was ridiculous.

Around 2 months after he came home I accidentally drank from someone elses glass. A complete non event, but not in my head. I was absolutely terrified that I’d picked up a cold sore, so much so that I was too scared to kiss my own baby. I’d cuddle him but I just couldn’t kiss him. This lasted for weeks. A few times I absent-mindedly kissed his soft little head and had to put him straight in the bath. Added to that the guilt of not kissing him was horrific, it went against every instinct as his mother. He’d spent 7.5 months in a hospital cot with minimal human contact, and the vast majority of contact he had had was something painful or uncomfortable. I knew he needed as much loving physical contact as possible. I felt desperately conflicted, but I was so terrified, so overcome with fear that if I got too close to him he’d die.

These are just a few examples of my early symptoms. At this point I really didn’t realise how disordered my thinking was becoming, or how deep my anxiety ran. We’d been living in such unusual circumstances for so many months that I think I’d completely lost track of what normal was anyway. It wasn’t until things got much worse that I finally realised and started to seek out help. I’ll talk more about that tomorrow though.

Day 206

7/7/17 – Day 206

Guess who’s back in Telford..!


Arlo’s now on the children’s ward at Princess Royal. The surgeons said they usually just discharge to home after stoma reversal but they thought this was a good idea for Arlo as he’s a ‘complex case’ and this gives the dietician and children’s team here a chance to get to know him before discharge. We already have open access to the ward and I’m sure knowing Arlo we won’t be strangers over the next few years… πŸ™„

He’s been grinning his head off since we got here. He was like this when he got transferred to the Neonatal unit here too, loves a bit of Shropshire air πŸ˜‚

Day 204

5/7/17 – Day 204

Just a really quick update; he’s feeling much better today and is now on full feeds of 90ml every 3 hours! We still need to see if he tolerates this overnight but if he does then he can have his Broviac line out in the morning, which will be good timing because his cultures are back and it was a line infection, e.coli.

Thank you for all the well wishes etc yesterday. I’ve not had a chance to fully read/reply yet but will do later πŸ™‚

He’s been treated to this sit me up chair thingy today and I think he approves 😊 He loves being sat up now. When you cuddle him he gets frustrated if you cradle him and much prefers to be upright having a good look around. Only popping him in for a few minutes at a time for now because I don’t want to put too much pressure on his neck/back but he seemed comfy enough earlier πŸ™‚

Day 203

4/7/17 – Day 203

29 weeks old today.

And yet again we’re reminded of how fast things can change…

Arlo’s poorly again. He just suddenly went downhill at about 5pm last night. Heart rate over 200, high temperature and high pitched crying. He’s fighting… something. We don’t know what yet though.

Could be his line, could be his wound, could just be something viral. He’s had the usual septic screen, TPN has been taken down and replaced with clear fluids & he’s started antibiotics.

It’s been a loooong night and but he’s a little bit better today. The surgeons have decided to push feeds up quicker than planned and hopefully he’ll tolerate it and we can forget TPN and get that line out for good. So he’ll be going up 5ml every 3 hours now which should see him reach full feeds by tomorrow at 1pm. Keep your fingers crossed for him please πŸ’›

I think I could probably write another 3 paragraphs of pure self pity today. I’m tired and grumpy and feeling a bit worn out with it all. It won’t change anything though will it I suppose. Just keep swimming 🐟