The room was dark and my pillow was wet with silent tears. I could hear my husband breathing deeply as asleep beside me, but sleep had escaped me. I wished the hours away waiting for the light of day to return and cast its glow upon the earth once again. Unable to bear the silence of the dark any longer I raised my battered body to sit on the edge of the bed. There was no baby’s cry to pierce the night, no baby’s skin soft and warm to stroke. No baby to relieve my aching breasts full of milk. The pain in my body was nothing compared to the pain in my heart. I was home but without my baby, she was lying in neonatal without me, and my arms ached to hold her.  So at 7 am, darkness starting to give way to dawn, we drove the few miles to the hospital, it felt like a lifetime, every red light prolonging the agony till I was with my baby again.

If I could have run to Neonatal I would have, but instead, I stumbled there, every step was an effort, but I managed it. The staff seemed surprised I was there so early but I knew I would not be leaving her again.  I looked at her lying there in her incubator, tubes and cannulas, her feet black from all the heel prick tests and I felt so much guilt. The days I was in HDU she had lay here alone, had anyone comforted her when she cried, had she been scared and in pain? What did she feel when having her phototherapy, needles and drugs, did she cry for me wondering where her mummy was? The pain I felt was like stabs to my heart and I knew no matter what I was not leaving her again. I would be here for every feed, every nappy change, every test. I would hold her and stroke her and protect her. She was mine and I loved her with every inch of my being, that love had a hold on my heart and ran through my veins. The birth had nearly killed us both, robbed me of her, and her of me. At 34 weeks she had been taken from me and started her life, her first hours and days alone, but no more. I would be here, no matter what it took, no matter how long, because she was mine.

The Neonatal became my life

That night despite the staff’s pleas to go home I slept in a chair beside her incubator, well I say slept I actually sat and stared at her till my eyes could no longer hold themselves open. While I had been an in-patient my days had consisted of wheeling myself down to the unit in a wheelchair and then sitting by her incubator helpless. I was so ill that it took everything I had to manage to stay with her as long as I could. Watching the nurses clean her, change her, and feed her in the plastic box that was her home, like a wall that kept her from me. The machines constantly bleeped and alarms signalled for a nurse to attend, more drugs given and wires covered her tiny body monitoring her heart, her breathing, everything. She needed phototherapy and so for hours, the light would cover her skin, her tiny body fighting to flush the jaundice out. My time holding her was fleeting and at night I would return to the ward empty handed listening to the cries of the other babies and I would cry myself to sleep. So much of her care that saved her life and kept her safe those first few days was a blank for me. But I was here now and that was all that mattered.

It was a scary place and I felt out of my depth. The machines beeped and buzzed and when Kathryn was in the incubator I was terrified to touch her. I asked permission for everything, I had changed her nappy a few times but the staff were doing nearly all of her care otherwise. I felt so inexperienced so unsure as a mother. I often didn’t know what they were doing to her but felt scared to ask in case I distracted them or prevented them from doing their job.

After a week the staff said to my surprise they were happy with Kathryn’s progress and she was to be transferred from the incubator into a hospital cot to see how she would progress now that her phototherapy was over. This was a massive difference and I felt relief that she seemed to be winning her fight. I had already told them I wouldn’t be leaving the unit again and they told me the small flat at the end of the unit had become available and I could stay there at night. It was a tiny room with a single bed and a chair but also a window that flooded it with light. To me, it was a haven, a place to retreat to after the long days on the unit and a place where I could rest and recover. But it also meant that even at night I could be part of her care.

Now she was in a cot I felt less separated from her, I could reach and touch her without having to ask but I still felt scared to just pick up my own baby, she was so small and I worried about the tubes and cannula. It took so much courage but I began to ask the nurses if it would be ok for me to do the changing of her nappies from then on and I felt my heart leap when they said yes, such a small thing yet it meant so much to me. Slowly I gained confidence to pick her up on my own and it made my heart soar just to hold her whenever I wanted and check every detail of her. Her pointy elf ears and tiny nose, to the bruises on her hands from the cannulas and her bruised feet from the heel pricks.  I could not believe how tiny she was and yet so perfect like a dream. I felt like I was finally getting to know her, my baby that had grown inside me for only 34 weeks before she was taken from me.

Finally in a cot

The journey of breastfeeding

I was still expressing and Kathryn was having my breastmilk via NG tube but I would just sit there and watch, feeling helpless and in the way. The nurse would aspirate her after every feed to check the tube was still in the correct place. I was so desperate to breastfeed but the staff felt she would struggle. So I asked if they would let me feed her by the tube and they taught me how. This wasn’t how it was supposed to be filling a syringe with my breastmilk and watching it slowly flow down the tube into my baby. I kept saying about how much I wanted to breastfeed her so they decided they would attempt to cup-feed her at first with the tube left in place to see how she got on. After a few attempts she was doing well she really took to lapping up my milk. I think it must have tasted so good to her because her eyes would be wide open and she would become so alert.

My desire to breastfeed her was so strong and so they said I could start putting her to the breast but we would have to be monitored closely. The doctor told me that she most likely would not latch due to being premature and not to get my hopes up, at best I would be able to maybe bottle feed her my milk with a little breastfeeding in between but I was determined. After all, they had also told me I’d have trouble producing milk because of my traumatic birth and the severe blood loss, but my consistently pumping with my swollen hands and exhausted body had paid off and eventually, my supply had built to way more than she needed.

Just being able to care for her meant everything

The first time I put her to my breast I was terrified, no one showed me how and clumsily I guessed, at first she just licked but after a while, I was amazed to see she latched! The tears rolled down my face I could not believe it and I called out to the nurse who too was shocked. My tiny 3lb 9oz baby as she now was, was busy sucking away. I was placed on a two-hour feeding plan and I quickly learnt a lot about feeding a premie baby. It was exhausting especially at night coming to the unit from the flat because I was still so unwell but I was just so happy to be breastfeeding. There was always concern about me breastfeeding and every day they would weigh her and check her blood sugars saying they would need to top her up if it wasn’t enough. They would watch me feed and constantly say that they were amazed that she continued to feed. Slowly to everyone’s surprise there was a little weight gain each day and so after five days, I was allowed to take Kathryn with me to the flat at night.

Over the next week slowly things began to improve. Kathryn remained with me in the flat and we only went on to the unit in the day for her checks and the doctor’s rounds. I had a lot of pressure to top up Kathryn after breastfed to ‘fatten her up’ but instead I would just put her to the breast all the time, in fact, she practically lived on me and I loved it. It felt like she was truly becoming mine and I was not going to let go. Just being able to care for her meant everything. I loved every nappy change, I could not get enough of her smell and the touch of her skin. I ignored the doubts about her feeding but plodded on not really knowing what I was doing, but as she lay in my arms looking up at me so tiny and beautiful I knew we would be ok, I would make sure we would be ok.

I was desperate to go home and so after 4 weeks in Neonatal, I was finally granted to take my Kathryn home on the condition that the community neonatal nurse visited us at home for the next few weeks. It felt like a dream as I dressed my baby for the last time in the unit and strapped her into her car seat. After thanking all the staff that night we left for good and I was absolutely terrified, as we drove home reality began to kick in, I had been used to the staff being there all the time, to ask, to lean on and now I was on my own. That night as I lay in my own bed a tiny cry broke the darkness, my baby needed me and as I dragged my weary all most broken body out of my warm bed to go to my baby it really was the best feeling in the world and I would not have changed it for anything…….

We continued our breastfeeding journey for a wonderful 15 months. We battled oversupply, colic, tongue-tie and pressure to wean early. I feel so proud of all we overcome on our journey. It was this journey that led me to train with the BFN and then volunteer as a helper, and also to work as an Infant feeding support worker for the NHS in the same Neonatal unit where I was with my Kathryn. Nothing gave me more joy than to provide the support I never had to moms and their beautiful babies. It is also my journey and her birth that has moved me to offer support to others around traumatic birth and the journey of neonatal. I have also worked hard locally and nationally to highlight the impact of a traumatic birth on families and also the journey of neonatal. I feel privileged that I now do this as my job caring for women and families during pregnancy and birth.

Yes, my despair led to a much bigger journey and for that I am grateful. Our experiences in life can be used for good, and we should never underestimate the power we have in those experiences to offer hope and support to help others.

Neonatal Journey – From despair to home

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