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Mothering does not always go to plan

Tuesday, 12 July 2016  | 

1. Things do not go to plan- I took home an empty car seat from hospital, I think this is one of the first real shocks to the system that my baby was ill, he was not coming home with me but staying in NICU. On the night he was admitted (only 12 hours post birth) I was moved to a side room off the ward. The next morning someone came in to get the cot that was in there as I wouldn’t have been needing it. The car seat left abandoned on the floor, I think as days went by I may have put clothes on it. It wasn’t looking like it as getting used anytime soon. The brand new £135.00 Maxi Cosi in Graphite Crystal no less, was as empty as I felt. I was discharged from hospital, with Elijah still being in NICU and had to walk through the ward, pass the staff stations with my wash bag in the car seat instead of my beautiful baby boy. This is where I should have proudly carried my baby through the hospital and shouted at Greg that he didn’t secure him tightly enough in the car. That I should have been welcomed home with him with banners, and bunting. Instead I went home alone and called my Nan to cry.

2. I can speak to a medical professional like a pro- I spent the first few weeks of Elijah coming home not with friends and family. Not spending time as a family before Greg’s paternity leave ended but with health visitors, NICU outreach staff and hospital appointments. We spent our first weeks as a family talking to most of the medical profession in England it seemed. They began to treat and speak to me as through I was on their level.

3. Always be prepared- My changing bag had the usual things nappies, spare clothes, bottles and all of Elijah’s medical notes in them, at times I had a more accurate record than even the hospital did. When we went down to pre admission for Elijah’s op they photo copied my notes! I also have quite an intricate knowledge of heart and medical terms.

4. I grew in confidence I used to be a very nervous person, but when it comes to Elijah I don’t hold back. I will push for what I think is best for him in all aspects of his life/ condition and treatment. Greg describes me as a bearded dragon at times!

5. I became a hospital expert- You can place me and Greg in any hospital, within about 10 mins we would have sussed out where the main reception, restaurant, toilet and smoking area is. Basically living in hospitals, we have become very educated on hospital etiquette! We can easily find a daily routine of eating, showering etc.I have also become an expert at the mass text. For any hospital admission or appointment, I can message every single one of mine and Greg’s family and friends with news/updates. Quite a talent as well as I barely ever have signal!

6. Be flexible (or lack off) with sleeping arrangements- Me and Greg both have quite serious back issues, I put this down to spending our fair share of time sleeping in hospital beds with Elijah, chairs and those fold out beds. All of the above do not come with memory foam.

7. I experienced fear like never before-The gut wrenching fear that when I take Elijah to the doctors that it may result in a referral and hospital stay. I can pack an overnight bag for Elijah, myself and Greg in 5 minutes flat.

8. I am strong- Strong enough to cope with seeing my baby in an incubator covered in tubes and wires hooked up to every machine going. To cope with the constant noise, lights and beeping from the machines. To see him come up from theatre with a 2inch incision mark, a broken chest and a chest drain stitched into him. These were so hard to deal with but became part of the norm for us. You love your baby and do what you can no matter what you will find a way to comfort and bond with them

. 9. Never be ashamed of your feelings-This one took a long time to realise but it is one of the most important lessons I learnt being a heart mama. Never, never feel ashamed of how you are feeling no matter how dark your thoughts become. You are feeling them for a reason. Do what you can to cope. To survive. To be there for your baby. It may feel like you cannot do this, but you can. You are strong enough. You will feel resentment, anger, denial, elation, hope, crushing despair but these are the standard emptions when your baby is ill. When they are better it might not just switch off straight away. Do not feel guilty or ungrateful it will take a while to process this, to move on from this.

10. To help others- I have learnt to support others going through this journey. To comfort them, raise awareness, mentor and support them. It is so isolating dealing with a child in NICU or who needs a life threatening operation and most do not know what to say to you. I found talking to others, honestly and not to be ashamed of how you felt at those times makes you finally feel understood and for the most part, normal again. It is strangely comforting reading others stories.

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