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Super Elijah – Relections from a NICU Mum

We are so grateful for Vicki’s honest reflection about the birth of her son, who suffered a neonatal stroke and had a heart defect. 

Can I ever live up to being the mum my heart warrior superhero deserves me to be?WP_20160506_013

When I look back at my achievements, I think having Elijah was far by the best one. Yes, I got good GCSE’S and A Levels and even passed the first year of a law degree! But, I haven’t run a marathon, or won a trophy or medal. I don’t really think of myself as achieving much. Before I had Elijah I have to admit I wasn’t even that charitable! When I fell pregnant I envisaged I would be an amazing earth-loving, organic mama with her child at the centre of her world. It didn’t really turn out like that though.

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At just 12 hours after birth, Elijah began to have dusky episodes. He was going purple for a few seconds. He was admitted to NICU where they diagnosed him with Tetralogy of Fallot, a serious congenital heart defect. He also suffered a Neonatal stroke, causing seizures. This stopped after he was put on medication, but they didn’t know the impact this would have on Elijah’s development. Alongside the fact that he already needed surgery to repair his heart. My one greatest achievement (giving birth to a healthy baby boy), well it seemed it was taken away from me. I was also very ill after the birth and I couldn’t even breastfeed him. To spend hours at your son’s bedside in NICU wondering if or when he would come home … I felt so helpless. I most certainly did not feel like a mother. I didn’t know what I could do to help my baby. Surely a mother would know? Would be able to make him better? To be able deal with what was being thrown at us? Instead I went to pieces, I stopped eating, began self-medicating and chose to discharge myself after 7 days. I went home, with an empty car seat. While Elijah remained in NICU for 2 more days.

We finally could bring Elijah home 9 days after I gave birth to him, with regular check-ups and a looming surgery date. I feel like I failed Elijah as a mother as I couldn’t get over the fact my baby needed this life threatening surgery and that I may lose him. I couldn’t come to terms with it, and as a result, it really affected me as a person and as a mother. I was depressed, anxious, not eating, barely sleeping and I shut myself away not wanting to explain myself or the situation to anyone. I feel that Elijah deserved so much better in those first few months, that I should have taken him out, I should have been the fun mum, and made as many memories and experiences as I could. I felt so much guilt that it was me that caused this, they suspected the delivery may have caused the stroke, well I delivered him, so this was my fault. I carried him for 9 months, grew him, and felt I had failed at that, too.

The surgery was scheduled for when Elijah was 6 months old after a lot of badgering and putting Elijah on the cancellation list. I feel as a mother I should have been strong, to be brave, but I wasn’t. I was as far from that as you could possibly get. Elijah was so brave, the definition of brave. Yes, you could say he didn’t know what was really happening but I looked at him in his gown, not even flinching when the black mark was put on his chest. He sat on me while he was put to sleep and then they took him. They took my child to open him up and repair his heart. I couldn’t even kiss him goodbye. The heart that I felt responsible for not growing properly. Was it my fault my baby was having to go through this? This huge surgery that so many of us don’t have to have. I mean the worst thing I ever experienced was falling over and needing to have my eyebrow glued back together. I had never even broken a bone and my child came back up from surgery after being opened up, having his sternum broken and heart repaired. After all of that he was still trying to wake up when he heard my voice. I looked at him lying there with his chest drain stitched in, draining the blood and I knew my son was a warrior, a fighter, and the strongest person I knew. At just 6 months old he overcame this surgery and fought to recover so well. We came out in 5 days!

WP_20150427_007You would think that is where the story ends, the surgery was over, Elijah was well. I could go back and be that amazing mother I imagined myself to be. Wrong. The NICU stay and surgery had mentally really taken its toll on me, I just couldn’t get over it. Get over the fact my baby had been through this, that I was robbed of my healthy baby boy and picture perfect motherhood journey. I did the right things, I held him the right way. I took him to baby classes and got him a place in a top nursery. I hand made his purees every day. I felt I was just going through the motions of being a mother. Elijah was the one that had open heart surgery not me, what right did I have to keep feeling like this? To keep letting it taint me being the mother I could be. That he deserved. I knew I had to get some help, I was irritable, snapping and my relationship with Elijah and Elijah’s dad was suffering as a result.

I went to the doctors and was put on medication, I was also referred to have counselling and this is where a PTSD diagnosis was made. Elijah was going from strength to strength, he didn’t let the surgery or a Neonatal stroke affect him. As time went on I began to see I should take example from him. To be strong, to be happy and smile no matter what. He really is the happiest little boy. He makes me beyond proud to be his mother. How well he has coped, how far is has come. We have just been discharged from the development clinic as Elijah is doing so well! He is so caring, he is protective over me and is so lovable.

This is why I know my little boy is a heart warrior and he is my superhero. I have never looked up to or learned as much as I have from him. He isn’t even two years old, yet he has taught me so much, he has changed me as a person. He has also taught me to be a mother. I know he loves me no matter what. I just hope when he is older and reads this and my other blogs back that he doesn’t think I failed him as a mother. As I tried, I really did, but it was so hard watching my own child have to go through this, and having the guilt that it was all my fault.

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If Elijah has achieved more than some adults do in just under two years, I wonder what he will achieve when he is older? He has already taken part in his first charity fundraiser and helped to raise nearly £1000! He is considered developmentally quite advanced for his age, and doesn’t let anything (especially not having a small thing like heart surgery) get in the way! I will always live in fear that I am not a good enough mother for my little superhero. I just hope he is proud of his old mum when he is older, and that I can live up and be the mother of the superhero that I gave birth to.

– Vicki, NICU Mum

 

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4 replies
  1. the frenchie mummy
    the frenchie mummy says:

    Gorgeous little boy! He is doing so well and it’s the evidence that you are doing a great job and you are a good mum. I had the same feeling of guilt when we discovered my Baba had a VSD, all repaired now. It happened over two weeks ago. But I searched and read a lot into it. It’s nothing to do with us. It’s literally a lottery! Every 15 minutes, a baby is born with a CHD. It’s 1 pregnancy out of 100! God knows that there are times when I feel weak and vulnerable. When the doctors told us about my little one, I was in tears. I didn’t want them to touch him and refused the truth. To them, it was a routine surgery, in and out of the block. Within 2 days he was back to his old self and is now a strong boy!
    just this so long comment to try to make you feel better. Not your fault, just this stupid destiny! Hope you are ok. Loved the honesty of your post and I hope it made you feel better! #hearttoheartlinky

    Reply
  2. Louise (Little Hearts, Big Love)
    Louise (Little Hearts, Big Love) says:

    Oh Vicki, you are a wonderful mum even though you may not feel that way. You were suddenly thrown into the rollercoaster that comes with being a heart parent when your beautiful boy was just hours old – with no time to even process it. Trying to mentally cope with all of that and the fear that you would lose your son is such a hard thing to have to do – you are only human, after all. So glad that Elijah is doing well now and that you have been receiving counselling and medication to help with the PTSD. Thank you for sharing your journey with #hearttoheartlinky

    Reply
  3. Gemma - Heart Mammi
    Gemma - Heart Mammi says:

    Martha was supposed to be the last baby to complete our family, she would just slot right in – being the third she would be easy because I knew what I was doing by then.

    I too feel like I’d been robbed of the experience of enjoying the newborn days, that I couldn’t worry about the trivial things you worry about with a newborn – you have “life or death” situations to deal with.

    I’m so happy that you are also getting the help you need, it’s so important that we look after ourselves – we cannot pour from an empty cup xxx

    Reply

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