Mum time, NICU Talk

What I Know Now.

Rewind 18 weeks. Back to the time when Baby J was safely snuggled up in my belly (sob) and life was seemingly perfect. Ask me what I knew about premature babies; ask me about NICU? My answer would have been nothing. Absolutely nothing. Apart from the fact they were tiny little red dots, and wore equally tiny knitted hats. You read about them in magazines. And they happened to other people. Not me. I was young, fit and healthy. I had a carried a baby to term before. So definitely not me.

Well what a learning curve the last few months have been. What a cruel, fast curveball that had been thrown. I’d entered a whole new universe that I’m still desperately trying to navigate around, and to be honest still feel swallowed up in most of the time. As humans, it’s sometimes good to find yourself in new or testing situations; it can bring out beautiful traits in you which you never knew you had; but on the flip side makes you sink to a whole other level. The ying and yang of life perhaps?

As I was drinking cup of tea number eight hundred this morning, whilst Baby J slept and Little T caused chaos around the house, I realised that as a person I had changed. I had learnt. I had grown. Yes I am still lost in this whole new world of premature babies, but I am slowly finding my way and coming out the other side. Dealing with things better. Now quite so fragile. No longer sat on the brink of tears. So this post is really a reflection of all that I have learnt in the past few months. Little as it may be.

  1. It Can Happen To Anyone – yes you, and even me. Sometimes, no matter what we do to keep the most precious of lives in our bodies, when nature and life takes hold, they really take hold. As a fit, healthy, 31 year old mother of one with no previous history of pregnancy related problems, it shouldn’t have happened to me. I have never smoked. I cut out alcohol. I was active and always ate well. I did everything I could to look after this tiny life, didn’t I? Then one day, out of the blue, my waters went. No waterfall gush. Just a constant gentle trickle. Then came the infection. And I didn’t even put two and two together. I’ve often asked myself why me? What did I do wrong? But the answer is I didn’t. The body can work in a funny way at times, and as my consultant told me, when the body decides to go into labour, into labour it shall go.
  2. It Wasn’t Your Fault – following on from the above, I don’t think there is a single mum out there who hasn’t been consumed by guilt for their little one arriving way too early. For me, consumed didn’t cut it. Paralysed more like. I’d go as far to say I hated myself for it. What had I done in the days leading up to the birth to cause this? Why had my body failed my son? I had one job to do, which was to carry him safely to term, and I had failed. Stupid, stupid, body. Stupid, stupid me. Now this plagued me for a long while. My mental health suffered. Then one day, as I sat next to my sons incubator and looked around at the other mums in the unit, I saw these loving, caring mums. These doting, heartbroken but strong and caring mums. All willing their babies to get better. All willing their babies to live. Did I blame them for their baby’s prematurity? No. Not at all. Not once did I blame them. So why was I blaming myself. I wouldn’t have judged anyone of them for what happened. Would they have blamed me? No. It took a long time to accept, but it wasn’t my fault.
  3. It’s Okay To Fall Apart…In a funny way, as I write this I feel a little embarrassed. A little uncomfortable almost. Composed as I am right now, I have to admit, only 3 months ago I was a wreck. A total, utter wreck. I fell apart. I wasn’t that strong mother I was supposed to be. Having a premature baby mentally affected me. For all the reasons above, and the reasons below. And more which I won’t elaborate on right now. The guilt of failing my son; the torture of seeing him suffer; the pain of leaving him in hospital day in and day out; for not being there for my other son at home; for being the ghost in the room. You get the picture. But in reflection, I had to fall apart. I had to grieve. I had to grieve for my lost pregnancy; for the life my son should have had; for the brother I had denied my son of having; for the son I had denied my husband of having. I hit rock bottom, and couldn’t function unless I was sat beside Baby J, watching him silently in his incubator. Watching him cling to life. But now, looking back, even with that twinge of embarrassment there, I’m glad I did it. I’m glad that I dealt with those emotions in most rawest of ways. I almost feel like I got them off my chest. Now I can honestly say I feel stronger, less fragile and mentally able to cope. Ready to cope with the future and accept what has already happened.
  4. …And Also Okay To Get Help – I didn’t just fix. I didn’t magically wake up, smell the coffee and just deal with life. I cried. I cried all the time in fact. I spoke to my husband (who knew he was such a pillar of strength!) I was honest. I repeated the same conversations on loop. I spoke to professionals. I had counselling. More than anything, I just knew I couldn’t go on like that. I couldn’t function in life and be a mother, wife, daughter, friend feeling the way I did. So I got help. Actually, that’s a lie right there. My husband got me help. He recognised my depression; he let me do the things I needed to do to keep functioning. When I needed to go to see Baby J at 3am he didn’t stop me. He put up with my funny little coping mechanisms. But importantly, he got me help. He spoke to my Health Visitor in private and put me in touch with a fantastic local company who specialise in Post Perinatal Counselling. Just knowing the support was there; that I wasn’t alone, was a step towards feeling better. As a breast feeding mum, there was no magic pill to summon the smile back on my face again, or to make it all better. So counselling was the route I took. I’m glad I dealt with it early, but I know some people aren’t able to or aren’t so lucky. But for me, it was the life line I needed to get my life and sanity back, and to deal with the sadness which over whelmed me.
  5. Step Away From The Google Bar – Baby J had a horrendous start to life. General prematurity issues aside, he had to fight for the first few days of his life so very hard. Harder than any baby should. Collapsed lungs, chest drains, sepsis, brain bleeds – need I go on. I needed answers. I needed to know what they all meant; what quality of life my son would have. I spoke to the Doctors regularly. But my brain would turn in a foggy haze and I’d struggle to retain what they told me. No worries, Google was always to hand. Especially in the dead of night when my brain wouldn’t switch off. Only in turning to trusty Google, I gave myself the fright of my life. I scared myself silly by what I would read. In reflection, I attribute it as one of the main causations of my anxiety. Now I’m no medic, I have no medical back ground or head for science. I didn’t know the in’s and out’s of these matters. Yet in a quick, generic Google search I thought I knew it all. Forums of other people passing on advice. Forums of other people, who if truth be known, are no more qualified to pass on information than I. Commenting on other peoples situations may bring reassurance, but also a lot of anxiety. After all, no one knew the complexity of my sons health. God knows even the Doctors didn’t quite know. So finding answers to my questions through Google, forums and the like was always going to end in tears. And for me it did, tears of anxiety, frustration and general fear as Google has told me the outcome of my sons future. It was only through further conversations with consultants and doctors, you know, real life professionals working in these fields, that I realised more often that not, my Google led knowledge was wrong. Or it just didn’t apply to my sons situation. Knowledge is power, but only if it comes from the right sources. For me, this means my medical related Google searches are a thing of the past. Do I miss them? Not one bit.
  6. People Are Wonderful – Yes truly, very wonderful. Not just the consultants, Doctors, nurses, specialists, army of physios and the like. It goes without saying that these people are angels in disguise. But the other mothers around you. The dads too. The family who help you out when you need it most. The husbands. The partners. The friends who rally around. The friends who you’ve lost touch with who offer to drop everything to help. The sheer scale of human generosity is brought out when times get tough. I have been touched by the amount of people who have done nothing but show their genuine, wholesome support. And the strength of the other parents around me. It’s a shitty situation to be in becoming the mother of a premature baby (excuse my French) but it sure as anything opens your eyes to the kindness of others. Be kind back. Be kinder in general. We owe it to each other.
  7. The Path Doesn’t End Here – Leaving the NICU was huge. It was the day we’d all been looking forward to; the day we never thought would come. But once we left the sanctuary of the hospital ward, a whole other journey awaited us. Being home certainly didn’t bring with it relaxed mornings of watching Jeremy Kyle in my PJs, or hitting baby yoga with friends. Instead, my diary is jam packed with appointments for Dieticians, Health Visitors, Ultrasounds etc. Not a week goes by without an appointment for Baby J, in fact I’d say it’s fair to say we average three per week. Obviously, in our individual case, we have certain areas of his health to follow up. We knew we had a long road ahead; a road that extended way beyond our NICU stay. It’s difficult; it’s testing; it’s exhausting and never ending. And yet again goes hand in hand with the fact that prematurity just sucks!
  8. I Know Everything and Nothing – My knowledge is slowly building. It stretches beyond the fact that preemies are tiny and wear knitted hats. I can tell you about CPAP, read the monitors that Baby J was hooked up on for so long, write a novel on the importance of hygiene in a baby unit, and tell you why I do the exercises that the Physio taught us for Baby J on a daily basis. But I also still don’t quite understand the medical terms I hear so often around me, or why exactly Baby J has the health issues he has, or tell from an ultra sound what the problem is. I’m not a Doctor. Nor do I have a crystal ball. I can’t predict the future. No one can. What I do know is I have a son who fought for his life from the very first breathe he took. He was born too early and has problems to face. BUT he is here! As he snoozes gently in his moses basket next to me I can never lose light of the fact he is here. And not everyone is so lucky. I will never understand the level of grief of the parents who lost their precious babies in the NICU. In so many ways, we were the lucky ones. And for that I am forever grateful.

Love and light – Baby J’s Mum x IMG_0234

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