Birthdays

 

I sit here right now, and my heart is racing, I feel like it might explode at any moment. This is not a good time of year for us. For over a week now I haven't slept well, constant nightmares waking me up, heart pounding, I don't feel safe. 

I was always one for going big around my birthday, partying, enjoying the moment so it's very easy to continue that pretence, I can hide behind it. Every birthday is another year without Evelyn.

Let me tell you about our birthdays 5 years ago. 

 2nd April 2019 - As usual I went to spend the day with my girl. Lots of cuddles. She hadn't been well after her vaccinations, which is normal for preterm and poorly babies as so much of their energy is going into just surviving. I remember Aly read her a bedtime story that night, and we left her to go to bed. That never got easy, having to walk away every night, it crushed me.

3rd April 2019 - As usual I turned up in the morning to spend the day with my girl, but this morning was different. The nurse came running towards me to say she'd been very poorly overnight, that her breathing was laboured, and her stats had dropped. I ran straight to her side, held her, let her know mummy was here, fed her. However, I also wanted to know why the hell no one had phoned me. The nurse said she couldn't find my number. My phone number was there, on the system, so why they couldn't find it to this day I will never know. That was so distressing that I wasn't with her when she was struggling. 

Her consultant visited on that day, could see how laboured her breathing was physically, she just couldn't draw in enough breath. It was decided that she needed more help with her breathing and overnight needed to go onto CPAP. Until this time Evelyn had coped on breathing apparatus called Optiflow, which provided extra oxygen for her. The problem with being on breathing apparatus for a considerable amount of time is that your windpipe becomes floppy, it collapses in on itself. What CPAP provides is pressurised air that opens your windpipe back up. However, CPAP is noisy and uncomfortable. Additionally, with CPAP her feeding tube could no longer go through her nose, it had to go via her mouth and down her throat. Again, very uncomfortable. Evelyn was an older baby by now and CPAP heavily disturbed her rest and comfort, which was incredibly distressing for us all. 

Over the next week we were visited by various experts and consultants. We found out things that hadn't previously been shared with us. The lung specialists looked at the chart showing her blood gases results. I won't go into the ins and outs of blood gases here but suffice to say when you looked at the graph, they'd been getting worse and worse over the weeks. This was not what they wanted to see, there was a clear decline in the oxygenation of her blood. Her heart was very poorly, showing signs of pulmonary hypertension. As I started to understand what pulmonary hypertension was, there was little surprise that she'd developed it. The heart should be pumping to 2 lungs, but in Evelyn's case there was only one. The problem with this is that the pressure doesn't change, it just increases to the one lung causing the arteries to thicken and stiffen, making it more difficult for blood to flow through. The heart becomes weak as it has to work extra hard to keep pumping blood.   

What angered me was none of this information had been shared with me earlier. I had no idea her heart had already been showing signs of weakness weeks earlier. You feel so guilty that you didn't know. It's your baby, you are supposed to know everything going on with them. 

11th April 2019 - Aly's birthday. I was stood with several doctors, consultants and nurses around Evelyn's cot. She had developed oedema, a sign of pulmonary hypertension. They were all very concerned for her and made the decision that she needed to be transferred back into intensive care. She had CPAP on permanently by this point. I held her tightly, right up until I had to let go to allow her transfer. I just kept crying, asking the nurse why her? Why was this the life she was given? That was the last time I cuddled her for 2 weeks. 

We had to get out of the way while they moved her back to intensive care. She needed to be intubated, meaning a tube to help her breath was inserted down her throat. She also had to be back in an incubator. I was a mess, panicking outside the room, Aly by my side comforting me - I can only imagine what he was going through, that's his story to tell. Due to how I was reacting to not knowing what was going on with my little girl eventually the nurses allowed us into the intensive care room to watch as she was intubated, so I could see she was being cared for. For me though I just hoped she knew we were there as she was experiencing something so traumatic. 

This was the beginning of the end.