Well, here I am, back on the Bereavement boards, just 13 months after we given the news at birth that Beatrice Primrose was very poorly and would pass away soon. So I say 'only' 13 months, but my God we squeezed a lifetime into that time.
Beatrice passed away at 10.20am today- she was 1 year, 1 month, 1 week and 1 day old.
She eventually died of respiratory failure, as we always knew she would. She'd been suffering for about 2 weeks with pneumonia and it all came to a head last night. She was on 10 litres oxygen but thrashing around in pain. She even cried out, which was very unusual. She was given morphine, and an hour later her respiratory effort decreased. We were moved into a side room and dh was called. He arrived with Bea's sisters, and I inadvertently called my mum's mobile by mistake too, so she turned up as well. The girls said goodbye, then went to sleep whilst the adults all watched and waited as Beatrice's breathing became more sporadic and laboured.
However, before too long, in true Bea style, her sats rose enough to begin registering again and I realised her respiratory effort was increasing. We all breathed a huge sigh of relief and at 7am dh woke the girls to take them home for school, my mum left and Beatrice and I moved back into HDU with Beatrice on 15 litres o2 and her sats hovering around 80%. I closed my eyes and slept until 8.30. On waking, I noticed Beatrice was the same, but I was overcome with an urge to cuddle her. So, I lifted her out of the cot and cuddled her to me. As I did so, her sats went into free-fall.
I watched the monitor as her numbers decreased and called the nurse over. She looked worried as Beatrice didn't respond to suction. A male nurse came in and began to resuscitate Beatrice with a bag and mask as 2 doctors appeared and helped with a jaw lift. It was at this point that I was advised to call dh to come back to the hospital, which I did. We moved back into the side room and the team continued to bag Beatrice until dh arrived. At this point, we chose for resuscitation to be withdrawn and to just give Beatrice the 15 litres of o2 through a mask and allow her to slip away.
Her heartbeat was still strong, but her breathing effort was laboured. We removed all Bea's monitoring tabs and sats probe and gave her a lovely warm wash. We dressed her in a brand new babygrow and I put her hair up in a little top side knot. At this point a nurse came in to check her breathing and dh and I cried and cried and cried. Just as the gaps in her breathing were getting wider, Bea's lovely CCN who has supported her and us since week 1 came into the room. I know I was howling at this point and gripping Beatrice to me like the precious bundle she was. Finally, dh kissed her head, and Beatrice squeezed my finger in response. At this point, she made two gurgling noises, and she was gone.
I can't really explain that pain. I guess my chest was physically aching. But a weird twist of anxiety that had formed in the pit of my stomach over the previous weeks suddenly disappeared.
Then it was all go really. Phone calls made, mum and PIL came in and broke their hearts. Dh collected girls from school as the nurse checked Beatrice for 'leakages'. We made the decision to drive Beatrice to the hospice in our car so for this we needed a special letter and had to inform the police- who knew it is illegal to drive with a dead body in your car? The nurses took finger and foot prints, and we chose a curly lock of hair to cut off and keep, and the hospital gave us a lovely wooden box to keep her momentos in.
Then the girls arrived, and we took them into a side room to break the news. I did the talking, blabbermouth, and just reminded them of what I told them a year ago- Beatrice had become too poorly. The doctors tried to help her but they couldn't, so she had to go to heaven. I reminded them that she was very poorly, and normally healthy children like them don't just go to heaven so they didn't need to be scared for themselves. Then we sang This Little Light of Mine because there's a verse we always sang to Beatrice- "If you get to heaven before I doosy doosy, you get to heaven before I doosy doosy, tell those angels, I'm coming toosy toosy, children of the Lord". So we decided that Beatrice has gone to meet the angels, but warned them we're coming too one day! Then dd2 cried, but dd1 remained stoic.
We went back then to be with Beatrice and had our photos taken together. Then a couple of nurses came to say goodbye and we had to put Beatrice in her car seat (the law even when dead, again, who knew?)
We drove to the hospice and I held Beatrice's hand the whole way, although she was getting colder and colder. On arriving at the hospice, I was delighted to see the allocated carer was the first to book Beatrice in on her first stay back in February. We carried her to the Little Room, a chilled room where Beatrice can stay for 7 days. I tucked her up in a Moses basket with a blanket then we went out for a cup of tea and to begin the next chapter in our lives.
We were so pleased to find a family we became friends with from Lourdes are staying here, so we had cuddles and shared Bea stories while the girls cheerfully played with a helper.
After tea, I put the girls to bed and returned to the Little Room. I wrapped myself in a duvet and gave Beatrice a beautiful, long cuddle. She is so cold now and pale. BUT, her hair smells the same! It still smells like Beatrice, so I buried my face in in her curls, drank in the gorgeous scent and howled until my throat hurt. I rocked her and sang all her lullabies, then placed her back in the moses basket and said goodnight.
We asked for her feeding tube to be removed, and when dh went back over to see her, he confirmed they'd done this and took some beautiful pictures. My God, my girl is so adorable. So completely beautiful and at peace. She looks like a sleeping doll.
I'm in bed now. I've not slept properly for 48 hours, but I'm not even tired. I had a lump in my throat and I'm dreading tomorrow, I guess that's when the real hell starts.
I love you Beatrice, good night sweetheart.