Following on from yesterday I thought it might be cathartic to write down an account of Day 5 until Day 7, that writing it down might help just get it out of my head and help me clarify it. It is sensitive, and I have bawled writing it, so if you don't want to read it I will understand.
When Joseph was born, I was positive. My obstetrician told me he was delivering a live baby, that the time in NICU would be hard, but that I would get my baby. Looking back, I think he took a massive risk in saying that to me, however, he did, and it kept me going in the hard times that were ahead.
Naively I thought that the birth would be the riskiest time for our baby. I heard him cry, and once I’d realised that it was my baby, I felt reassured, I felt he would be fine. I had no idea of what lay ahead. And whilst I knew it would be hard for him to grow, to feed and to be well enough to come home, I had no idea of the complications of prematurity and the things that could cause a small baby not to come home. I think now that that might have been a blessing rather than a curse.
The first few days of Joseph’s life, really, were uneventful. He was in his incubator, he looked ok, he looked like a skinned rat, but a well skinned rat. If there can be such a thing. He was active, he was bright, and I thought he was the most beautiful thing I had ever seen.
On the morning of day 5 I was still inpatient at the hospital. I went to see him early in the morning then went up for breakfast. I came down again and the mood was very subdued. The usual buzz wasn’t about. I felt a seed of dread, about to grow, in the pit of my stomach. They pushed me out and locked the room down for x-rays. This kept happening throughout the day. They did regular blood draws. There was a doctor in the room at all times. I was absolutely terrified.
But, I didn’t show it. I kept my Pollyanna head on, and I sung my songs, and massaged his foot, and did the containment holding. I kept completely calm even though inside I felt like a washing machine on a spin cycle. I wanted to throw up. Finally one of the doctors came to me and said “things have changed, Joseph’s tummy is distended, we’re not sure what is going on, but it isn’t good”. This was around 11 o’clock in the morning. I went upstairs to my room, I can’t really remember why, just to get something, or freshen up, I’m not sure. As I walked into my room it felt wrong. Drawers were half open, things weren’t where I’d left them. I just assumed I was going slightly nuts and I went back.
Another doctor came, and said the same thing as doctor 1. I don’t think he knew I’d been told. He seemed almost pleased to be able to give me bad news, like Joseph was some sort of exciting case. He didn’t speak to me like I was a mother, and that this was my precious firstborn son. I was quite cross. I didn’t say anything, just nodded, and went back to my room for lunch. I straightened it up a bit, the bed was unmade, I didn’t touch it, I just couldn’t be bothered. I looked at lunch, it was unappealing, my husband suggested we go to the cafeteria. It was my first time outside since it all kicked off on the Thursday. It felt amazing to be in the fresh air.
After our lunch we went back to the unit. The tone had changed again. Things had gone from subdued to downright sombre. I was terrified, but I stood by the incubator, opened the doors and resumed the norm singing 5 little ducks, and massaging Joseph’s tiny foot. There was a very snappily dressed consultant, who had been brought in from another hospital, and an entourage of staff. This could not be good. He started to talk, very fast. I asked him to stop, told him I was still ill, and I had to sit down. Someone got me a chair and I sat. I can’t remember the exact words.
He started by saying that Joseph had a deadly infection. He told me that he thought it was NEC, and that Joseph could die. I nodded, calmly. He told me that I had no idea of the gravity of the situation and was too calm and was concerned about my mental health. My husband stood by me, completely numb. I listened as he went on to explain that there was little they could do, he was too weak for a long line, too weak for transfer, and that they were running out of options. I nodded again, still feeling calm. He said again “you should be more upset”. I looked at him and said “this is my son, I believe in him, I believe in you, now you do your job mate, and I’ll do mine. My job is to love him, to care for him and to sing to him, and that’s what I’ll do.” They then locked the ward to do more x-rays.
My husband left, there was an important football game on and I wanted him to see it, to have a break. I went back upstairs. My bed had been made by the lovely nursery nurse. But there was something wrong. Something was missing. I went and got the nursery nurse “Have you seen the blue teddy bear” she replied “no you must have misplaced it. I searched, but it had gone. Some midwives came in “it’ll be in here somewhere”, they said. I said “no, it’s over a foot tall and huge, it’s been taken”.
I started to sob, and sob, and sob. They had taken hope. Joseph’s first bear, bought by a visitor not a close friend, an acquaintance. But she, like me, believed in our baby. And now hope was gone. I couldn’t breathe, I couldn’t function, my baby was dying and his only toy was gone. My husband was called. He took ages. He came in with a little bear with a pink blanket. He said that was my comforter, and I could cuddle it and take it with me, so no one could take it. He held me whilst I cried. I sent him back to the pub to watch the football.
A very close friend came to see me, Teresa, with chocolate, with gifts. She and I went to see Joseph, who by now was actually looking a little better. We talked about him, it was lovely. She left. I sat by his incubator, it was now quite late, and I read to him and chatted to him and prayed for him. And then my husband came. We sat together and watched. My husband left at about 10.30 that night. I stayed with Joseph a little longer til I could stand no more. A doctor came in and told me that although he looked more comfortable, it was the morphine, inside a war was taking place.
I cried again on the way up to my room and I sat on the bed and howled and howled. A midwife came in and said “what is one thing that would make this better that I can do for you?” I cried “run me a bath”. So another midwife ran a deep, warm bath and helped me in. They found the fluffiest NHS towels they could find. I lay in the bath, patted my tummy and I said goodbye. I said goodbye to my pregnancy, goodbye to Joseph, and I cried some more.
When I got out and back to my room the midwife said I’d need to have a psychiatric assessment. She was concerned for my welfare. They had read my notes and saw my history of depression and felt I needed input. There was no one to see me, so they sent one of the obstetric registrars in to see me. She asked me lots of questions, and then told me she was taking me off my methyldopa and putting me on labetalol. I just glared, took a deep breath and said “no you are not doing that.” She looked at me, very confused. I then said “why am I on methyldopa and not labetalol Doctor?” she looked a bit uncomfortable. And I put her out of her misery. “I am a serious asthmatic and I made a well considered decision to go on methyldopa knowing that it was contraindicated for people with a history of depression, rather than cause my asthma to flare up, as at the time I was still pregnant and felt that with a background of pre eclampsia and IUGR an asthma attack could be fatal for my baby”. She smiled at me and said “clearly, you have more marbles than me, you are in an impossible situation, you are tired, you need to sleep, I’ll leave you alone”.
And with that, I went to sleep.