As Betty seemed to be getting better, the decision was made to remove her breathing tube. She hadn’t breathed on her own at all so I was petrified at the thought of the tube coming out, which I am sure sounds bonkers. I asked what would happen if she didn’t breathe and the doctors said quite plainly “we’ll re-tube her”. They said it like it was the most normal procedure in the world and actually, to those guys it is, but for me, the thought of my little girl struggling to breathe filled me with fear that shook my body from the inside. I decided not to be present for this. The step-down from fully ventilated is continuous positive airway pressure or CPAP. CPAP applies mild air pressure on a continuous basis to keep the airways open in people who are not able to breathe spontaneously on their own. It also has oxygen flowing through it into the lungs and this is adjusted according to the baby’s ability to saturate oxygen sufficiently. All NICU parents know their babies numbers! We knew what was good for Betty but all the babies were different. It is wise to only look at your own baby’s numbers because looking at others can cause all manner of thoughts. Thoughts such as “oh my god that baby is really struggling” or “why is my baby not doing as well as that baby over there”. All babies are different and so I tried to focus on Betty’s numbers but when other alarms sound it is hard not to look and be concerned. Once the tube was removed, Betty breathed without the ventilator which was fantastic. She moved onto CPAP which was a huge step forward in her treatment.
All the time she had the chest drain in, a cuddle was not an option because the position of the chest drain is vital and it is a delicate process. Moving her with that in situ would have been dangerous. I agonised over this. I was so concerned about our bond because I couldn’t hold her. But looking back, I know she knew I was there. She knew our voices and she knew our touch. With the chest drain now clamped, our first cuddle was getting closer…
To our delight, we were told that the chest drain could be removed. This meant a huge reduction in the risk of Betty contracting a hospital acquired infection, or any infection to be honest. It was also another step forward in her treatment, Betty seemed to want to get better now. And I didn’t ask, but I prayed for a cuddle with her. One morning, while I was eagerly filling in my little booklet on how to perform the NG feed safely (this is a requirement of all parents before they can go ahead and feed their babies via NG tube) I was asked by one of our favourite nurses if I wanted a cuddle. I thought it was a bit odd, why are you offering me a cuddle….?! She instantly saw the panic on my face (I am not a cuddly person!) and she made it clearer. Do you want a cuddle with your baby today? OH MY GOD YES!!! I could not believe it!! I just wanted everyone to go away so I could have my cuddle. I had to wait until the afternoon, to make sure Betty remained nice and stable. I was happy with this because my mum would be there in the afternoon and that made me feel safe.
When that time came, the nurse got me a reclining armchair, a screen to put around us for privacy and she told me to sit down and get comfy. She would get Betty out and place her, very gently, on my chest. And there it was. My first cuddle. Betty was 16 days old and I was so happy. I remember mum looking at me and James standing to my right. I was worried and kept looking at the monitors behind us and the nurse told me to stop it, she would worry about the monitors, just enjoy this first cuddle. I have to say, it is the only cuddle I have ever truly enjoyed in my entire life! My little girl, all 5lb 2oz of her (her weight after the fluid had drained off her) nestled into my chest. It is a feeling I can’t describe. I know all you mums out there reading this will know that feeling. This is the moment I fell madly in love. The fierce protectiveness was still there but it had been joined by an enormously overwhelming sense of love and devotion. This little girl might actually come home with us, maybe. I still didn’t want to get ahead of myself so I tried to focus on the moment, on each moment as they happened. I wanted to share this photo and part of our journey on social media a while ago, but I thought that without this explanation and background, people may judge. I think it is difficult to imagine not holding your baby for over two weeks, so I wanted to make the whole situation very clear first. If I could go back in time and have a smooth delivery and a healthy baby, I would take it in a heartbeat. But that isn’t an option.
It was James’s turn next and he looked instantly perfect with her on him. But he was selfless with his time and he insisted on me having more time with her. Carol said that Betty looked much more comfortable on James and it reminded me of when my sister had her little girl and she told me my arms were too skinny to hold her baby comfortably. That stuck in my head for all these years, thinking a baby would never be comfortable in my arms. But she was wrong and mum was wrong too! My little warrior princess was perfectly snuggly on me and I know she loved that first cuddle as much as I did.
Betty had whizzed through her breathing support really quickly. I will ask James to help me clarify the exact durations, but she went from CPAP to high-flow (oxygen prongs up her nose) to nothing in the space of about a week. When she had high-flow, she just pulled the prongs out of her nose constantly and no matter how the nurses taped the tubes down, she would yank them out! Actually this just proved that she didn’t need the breathing support any more. I think she was trying to tell the nurses and doctors this by playing with the tubes so much!
Betty was also being tried with cup feeds and she was doing well considering the monogen has a reputation for tasting and smelling gross! Thankfully she hadn’t ever tasted breast milk so she had no comparison to make! The nurses had to do the cup feeds and I’m glad of this, it looked really fiddly.
It was as if Betty was a computer that needed to be turned off and then on again, you know what I mean?! She needed to be paralysed and ventilated and medicated and drained etc etc. She needed all of these things so that she could reboot herself. And once she started to make progress she was unstoppable, mostly.
The next scary bombshell to be dropped was that Betty was to be moved to nursery one. Nursery one is half high care and half special care. While Betty was on the Monogen milk, and was doing so well with her breathing, she no longer required intensive nursing care. This was scary for me because I had become accustomed to nursery three. I knew the layout, the nurses, the mums and dads in the room. But it was progress and if she needed to go back to nursery three then they would take her back. So we moved…..Betty was put into a cot which reminded me of a Romanian orphanage. It had cream coloured metal bars, like something you’d see in an advert for a children’s charity. But, it was a cot!!! Not an incubator!
I didn’t like nursery one. There were a few saving graces though. One of mum’s best friends worked mostly in that room as a nursing assistant and she worked nights which meant when she was on shift, I could semi-relax. The things I didn’t like were the other people. It was busy in nursery one and there seemed to be loads of people around all the time. I remember one day I could smell cigarette smoke really strongly and it was from a family opposite us. I hated having no control over who my baby was around. There were also a lot of toddlers because siblings can visit any time, which is great….but I had been used to nursery one and our NICU friends quiet and polite little girl. Nursery one was chaos during the visiting times, grandparents and friends of other people. I wanted to protect Betty and I was terrified that one of the toddlers that were running around would poke Betty or bump into her cot. I wanted to take her home but I couldn’t. I had no control, again.