I had been struggling with my son's NICU admission and condition for quite some time after we returned home. I think in between the feeds, the new born sleepiness and sitting around so much you really get thinking. You over think, and things start becoming obsessions. I felt like I was being ungrateful, that I should be lucky I got to bring my baby home after 9 days and some are in NICU for months, or may not even come home. I struggled with what I was feeling and then feeling guilty about it on top of that. I was bitter, resentful of others and I started to shut myself away. I lied when people asked me how he was I didn't allude to the fact that he needed open heart surgery.
It wasn't until perhaps a month ago that I came across the term that fitted exactly how I had been feeling for all these months now. One that I could final label everything I felt in those first few months, and to some extent I still do. The term? That I grieved for my healthy baby. The healthy baby I didn't have. That when I went into hospital I didn't get to come home on the same day. That I didn't get to spend time with the other mothers and their babies on the ward. That we didn't bond over leaky boobs and how we were all walking like John Wayne. That I didn't get to take my baby through the ward with the midwives smiling at us looking on. That when we came home there wasn't banners or balloons and we didn't have family and friends waiting for us to meet our new arrival. It was strange, once I had this 'label' I felt like I could acknowledge this and move on. Very much like my PTSD diagnosis, things are easier to accept, to move on from.
I was so angry, that I didn't get the perfect birth. I just wanted what it seemed so many others had. I was so resentful of others I knew that went in and had their babies and came home. I wished it was me, I was so jealous of them. I think something clicked into place that I realised that no, I didn't get the birth I wanted. That yes my child was admitted to NICU, that he had a heart defect that required surgery at 6 months. It takes so long to process all of this. That yes, I grieved for my envisaged birth experience, but I also realised that I am very lucky. That my baby was allowed home and was well enough to come and spend those first 6 months with me. That for the most part we were a normal family with a new born. Setting aside the doctors' appointments and trips to hospital Elijah didn't need medication or equipment at home and we could just get on with it.
When you have a child in NICU, it seems like you are the only one going through this. Why has my child got to go through open heart surgery that he may not live through? How is this fair? Why us? God knows how, but we got through those 6 months, and the surgery. We came home but even though my child was 'fixed' and his heart 'repaired', I couldn't get over the fact we had been through all of this. That other mothers just seemed to worry about the usual things, babies not sleeping through, the odd cough or cold. My child had a whopping great scar running down his chest, and I couldn't even hold him under the arms. Where everyone was taking their children to the seaside or on holiday for the first time, we spent the summer at home. Elijah missed out on so much last year through being in recovery. As his chest was broken we had to be very careful until it healed.
I guess I always had in the back of my mind that this was my fault. I caused this, I didn't grow him properly. I didn't give birth correctly and it was my fault. I played the blame game for a very long time. It doesn't help though. It doesn't change anything, he still was ill, he still needed surgery. Blaming myself was not going to repair his heart. I decided I had to do something to stop this depression. It was going to wreck Elijah's future. So I got some help and was diagnosed with PTSD. I was put on medication and offered counselling but it didn't stick. It wasn't until I started blogging that I really felt I was beginning to accept everything, process it, and was beginning to move on. There are times I am still drawn back into all, where I feel resentment, anger, denial and blame myself. Now I have officially grieved for the healthy baby I didn't have. That I have a term for how I felt all those months, a label even I feel like I am normal. A normal NICU and Heart mama.
I felt like although I didn't suffer a physical loss, mentally I had to grieve for the baby and birth experience I had in my head for those 9 months. That is not to say I regret Elijah, or would change him in any way. He is the strongest, bravest and kindest soul you will ever meet, with a passion for showing off! When things don't go to plan, or go against that perfect idea you had in your head you can struggle with the reality you are being faced with. I coped with it by being in complete denial that there was even anything wrong with Elijah. This carried on up until Elijah's surgery pre admission. There are so many feeling, thoughts and a whirlwind of emotion that you face when your child is seriously ill.
But, I am glad that I have now come to terms with grieving for what my birth could have been, with the healthy baby I could have had. The fact of the matter is I didn't have those things. I still gave birth, my child did come home, I am still a mother but to a heart warrior who I wouldn't change for the world.