Amelia’s First Few Days…

The first night in the room was so strange we were just sitting watching tele and so confused as to what was going on. At this point we still thought that Amelia would be coming home on the Monday after we had spoken with the cleft team. Ameila was in room 4 a high dependency room as she was still on a lot of oxygen. Paul was back and forth trying to get some information and updates. I was still exhausted and in pain, I finally had the catheta removed and felt free. I just couldn’t believe what had happened. Paul had news that she would be moved to a lower dependency room and a lower oxygen rate, I was so excited by this I thought this meant that after a few hours she would be down with us where she should be. That couldn’t be further from the truth. Paul was so worried about the genetic testing he couldn’t relax, I wasn’t in any place to think about that I just kept trying to be positive, she would be fine she would be home.

Those first few days are a blur it was the weekend so it was very quiet, nothing much happens at the weekend as it all resumes on the Monday. Those days were just spent going back and forth to the NICU with whatever milk I had managed to pump out to be tube fed. Paul would wheel me up there, we would wash our hands and go in to see her, always hoping there would be some news. I remember having so many messages and well wishes and I just couldn’t respond we didn’t even know what was wrong with Amelia, I couldn’t face my phone or anyone on it. I missed Penelope so much just kept watching videos of her over and over, I remember thinking I didn’t even feel like a mother because both of my girls weren’t with me. I felt like a failure, Paul was amazing at trying to take the pain away he was so worried about everything and me, we were having breakdowns at different points somehow we were both there to catch each other when we needed.

Throughout everything he has been my constant, he has always been the strong one, the one to fix everything and solve our problems. This time he couldn’t do it I could see it was killing him, i wanted to tell him everything would be ok but he wouldn’t listen. He kept going back and forth trying to get more information he spoke the consultant after Amelia’s brain scan. She had said she couldn’t see anything that would worry her and after all the testing we had had she couldn’t see why there would be anything wrong. This gave us a little bit of hope and I think got us through, I have always loved my husband but I fell more in love with him when this all happened. He would feed Amelia and ask the nurses as many questions as he could. I couldn’t feed Amelia just yet I found it all too scary, at this point I still thought I would be able to bottle feed her at least.

Going back to the room was horrible, all you could hear was women with their babies, I felt so alone I felt as if I hadn’t had a baby. Midwives would hardly come in, they would give me my painkillers but that was it, I was told they leave you alone when your baby is not with you (or so it felt). I just remember feeling alone, scared and completely numb.

Its really hard to not compare when its your second child, I remember thinking oh this is different to Penelope and when I was here last time I would do this etc. I think it was more detrimental to me now but I needed to do it. It must have been a grieving process for me. Grieving the life I thought I would have but was now snatched away from me.

Monday soon came around, I had the feeling that I was about to be discharged as I kept getting visits to confirm my details and questionnaires etc. I couldn’t even think of that until we had the cleft meeting. They came between 2 and 3 we were waiting with Amelia from 1, I was scared but I think I thought it was going to be ok and we would take her home that day. I was so wrong, this was the start of the downward spiral we were about to enter. We have always said this meeting was the reality check of the seriousness of Amelia.

The cleft team came in hard and strong, there were so many of them all in their uniforms, it was really hard to take in especially for two parents who had no idea what was going on. They introduced themselves and explained why they were here but I can’t remember anything, all I remember was them taking Amelia and forcing a bottle in her mouth. I understand that this has to be done but it was hard to watch, I kept saying ‘that’s it you can do it’ just looking for some pure hope. She wasn’t sucking on the teat and wasn’t interested. She wasn’t hungry she was tube fed every 2 hours and didn’t know what hunger was, also Penelope had been the same she took 5 days to feed. I just wanted them to give her a break.

Then it happened the part which took me and Paul to another level. The main cleft nurse stood out in particular, she was harsh and seemed to take the lead. After Amelia wasn’t taking the milk she said (or something similar) ‘oh she’s not sucking that’s nothing to do with the cleft that would be something up here, (signalling her head and brain)

I could see Paul was about to blow ‘what do you mean, do you mean her brain?’ This nurse then back tracked she could see she had spoken out of turn, they were waiting for another brain scan and an MRI due on Friday.

I could feel myself slipping I remember just staring at the floor I wanted it to swallow me up, I couldn’t understand what was happening to my little angel. I felt numb and robbed of my new-born stage with Amelia. Finally the cleft team left, then almost like  a mirage our cleft psychologist t appeared from crouching down in our cubicle and stayed with us. She introduced herself and could see that what had just happened was all a bit to much. She explained the cleft to us so we could understand it and asked us how we were feeling. It made us finally feel listened too. Our community sister was there too she introduced herself and she became my strength during our NICU stay.

We were discharged that day Paul made sure it was sped up once we got back to the room, he wanted to get out of there I was a mess and he wanted to get us both out. I broke down sobbing on the bed, I felt terrible leaving Amelia there but I had to go, I needed a hug from Penelope and sleep, when I slept the pain went away. Leaving the hospital that day was one of the worst feelings, I could see other families leaving with their new-borns. We had an empty car seat, and the whole way home was just tears.

The next few days are a blur. I cant remember being at home. I pumped and slept and I just felt numb it was like groundhog day over and over. Paul had moved the cot into the spare room (as I had it all set up ready for her ) It was horrific, the pain from the c section was much more painful than before. When your baby is with you the pain doesn’t seem so bad as you look down at this beautiful little face and it all makes it better. Coming home each night without her made it worse, just an empty, numb pain.

A few days later we had the genetic team come and assess Amelia and take our bloods. We had our bloods taken and then Dr and her registrar came to see Amelia. Firstly they asked us if we were related, then asked if Amelia had kneecaps…it was all pretty horrific to be honest. It felt like our baby was a science project and they were poking and prodding her like she was an alien. I left the room full of tears, then suddenly appearing again when I needed her most was our cleft physiologist. We went to the quiet room and had a chat. Meanwhile I didn’t realise what was going on.

Our SALT team specialist (speech and language) was there with Paul through the genetic assessment and complained on our behalf as no parent should sit through that awful ordeal on their child. We left soon after I could see Paul had enough. He knew it was genetic and he knew it would be bad. I kept trying to be positive.