A blog by Leigh Newcombe Dumighan
To go into spontaneous labour at 29 weeks comes as a major shock and the experience that follows leaves everlasting scars. The NICU journey is so far from reality it still seems hard to believe we actually lived through it.
Although, when people ask how long we were in the neonatal unit (something most parents of preemies ask!), I feel a bit of a fraud because that part of our preemie journey was only for three weeks. That is, we were only in intensive care for three weeks and whereby the normal route to home is stopping by HDU and then special care, we skipped those other two rooms.
When our beautiful (well, more like monkey, sparrow like beautiful) boy was three weeks old, we had a devastating conversation with his Consultants and we made the heartbreaking decision to let him go. He was desperately unwell and, if by incredible chance he was to survive he would have NO quality of life. We were given the bedroom on the unit to say our goodbyes.
They thought was he would only last an hour because up until then he was still needing breathing apparatus. We got our friendly vicar to come straight away and christen Warwick and then his Daddy and I were left alone to give him cuddles. The only equipment he had on was his nasal gastric feeding tube and an apnea monitor to alert us when he stopped breathing.
As soon as we were left alone in that room, I instinctively put Warwick on my chest. He only had a nappy on (he had never yet worn clothes), and I had on a flimsy vest. It was August and the hospital room was stifling! An hour came and went and then the time just became a blur. As evening came, I really needed the toilet but didn’t want to leave Warwick for a second. As soon as he came off my chest, he cried. His Daddy and I had never heard him cry like that and there were times in intensive care where I used to beg to hear him cry and think I’d give anything to have him home and be up all night settling him. We couldn’t believe his little noise was his cry! I hurried back and resumed our cuddle position and he settled immediately.
The nurses came in every two hours to give Warwick his gravity feed of my expressed milk. He loved being close to me and it felt so normal and how it should be. The first night his apnea monitor went off eighteen times. His Daddy and I tapped his tiny chest to remind him to breathe but the following morning we talked and agreed if he stopped breathing he was ready to go and we had to let him. We were prolonging the inevitable for ourselves and that wasn’t fair on him.
Warwick started to look very poorly and his upper lip and brow were a shade of blue. When his monitor next went off, it was heart wrenching not doing anything and then he took a big breath and started to breathe again. We decided to take the monitor off as we were too focused on it and wanted this time to be all about the cuddles. It was amazing having no wires on Warwick, just his NG tube.
Our life became that room and we didn’t have to leave for anything. We had our meals brought to us and all we did was look after our son. We were in there for eight days and eight nights! Then, one of Warwick’s incredible Consultants came and said they needed the room back for parents travelling long distances to see their baby(ies). We had three options, Warwick to go back into intensive care, to go to a hospice or to go home with palliative care. I knew Warwick wouldn’t live any longer in the neonatal unit without me so we chose to go home.
On 6th October 2008, two months to the day from his birth, three Consultants all agreed there was no reason that Warwick was going anywhere. They could not fathom how he was still alive especially without any medical intervention or drugs. All he had had was love and miracle cuddles. Although Warwick is severely disabled he is a happy, healthy boy who certainly has a good quality of life! The miracle of skin to skin.
About The Author
Leigh is Mommy to three boys aged ten, six and one. She has been heavily involved with Bliss for a decade and is a parent expert speaker for the NHS where she shares her experience of neonatal care. She also talks passionately about the power of Skin to Skin contact. She is currently involved in ‘family integrated care’ projects and the need for parent led Preemie care.