Today marks a whole year from when we took Poppie home from the hospital. Attached to her oxygen tank and so incredibly tiny we were very nervous. She had managed to come home a whole week before her due date, an impressive feat, and not even needing her feeding tube.
I can remember vividly placing Poppie into the car seat, waiting impatiently for the lift and then waiting for Chris to pull the car into a spot where we could easily transfer her into the car. Time seemed to stand still as we waited for the car. I viewed every person that passed me as covered in germs and couldn’t stand waiting in the corridor, attempting to protect Poppie from the invisible lurgies surrounding us. I remember venturing outside to wait in the fresh but rather cold air. Once Poppie was in the car, Chris drove so slowly that I worried we would be pulled over.
Our first night was one of pure excitement as well as pure fear. We now had sole responsibility for this tiny being, but we had waited so long to bring her home. Attached to her oxygen seemed a daunting task at first, but we took it all in our stride, making sure that her prongs stayed in. As she grew older and bigger keeping her prongs in at night time became a worrisome task.
I love and hate the picture of me holding her before we put her to bed on that first night (above). I am exhausted and the mental strain of the last 3 months shows on my face. But simultaneously I am elated at the prospect that I have my girl in my arms, without the monitors beeping, without feeling the need to ask the nurses to give her a cuddle, finally where she should be. The following months were rocky ones but in that moment I was so happy.
Fast forward a year and I have the most adorable, delightful, spirited individual. She is fiercely independent shuffling around on her bum. Today she has celebrated her milestone with her first ever trip into London. An event which tired her out so much that she had a 2 hour afternoon nap! Tonight as I put her to bed she looked at me, almost as though she knows how special she is, and gave me the biggest grin.
The unanswerable question finally has its answer. When will Poppie lose the oxygen? And the answer – Now! We have started to wean her from it as she is ready and the doctors have said ok!
So now to our oxygen journey. We knew quite early on that Poppie would come home on oxygen as she was so incredibly small at birth and had needed help with her breathing since day 1. The only thing keeping her in hospital were her lungs. She had a few setbacks when she was on the neonatal ward, needing more help with the type of ventilation (from low flow to high flow) or an increase in the amount of oxygen needed. There were a few scary moments with her oxygen saturation levels, some that I witnessed and others that I didn’t. For those of you that are a little unfamiliar with my terminology; low flow are the prongs that you see in the photos, high flow provides oxygen supported with a pressure to keep her lungs inflated and oxygen saturation levels are shown as a percentage representing how much oxygen is swimming around the blood stream.
After making peace with the fact that Poppie would be arriving home with an oxygen tank I read up, I researched and discovered that she is not the only baby to go home needing a little bit of extra help. The charity Bliss had a very helpful leaflet with lots of practical advice. Obviously I would rather that she didn’t need to come home with a set of tubes but after 3 months of commuting to and from the hospital I just wanted her home. My desire to have her next to me in her cot, in my arms whenever I wanted and ready to show off to the world was overwhelming. Logistically there were a few obstacles to overcome such as being taught how to change the tubes on Poppie’s face, which felt a huge responsibility even though I had watched the nurses do it a hundred times. The excitement built when the oxygen man came and delivered the tanks as we knew it was nearly time for Poppie to arrive. A little silver lining to my beautiful oxygen baby was that we met another little beauty, Charlotte, who left the hospital before us, but also on oxygen. When we met up at the beginning it made me feel very cosy and then we took inspiration from Charlotte ditching it after only a few months.
Fast forward to now and after 11 months, 8 months after she came home, we finally have been given the go ahead to remove it from her cautiously and slowly. I think more for my benefit than Poppie’s! We hoped that it would be earlier but Poppie just hasn’t been ready. In November we had a huge setback where Poppie had bronchiolitis and put the fear of God into us as she was re-ventilated for 9 days and in PICU (paediatric intensive care at LGI). Then ensued a winter full of bugs and multiple visits to the children’s ward at Leeds hospital. Only one more overnight stay, but plenty of day visits!
Mostly out in public we are given sympathetic looks. At the beginning I wanted to shout at how far my little bundle had come. More recently there have been questions about it from old and very young individuals. I am always incredibly open. Only twice have I been a little offended when I have been asked ‘what’s wrong with your baby – is she poorly?’ Again I respond with honesty and the mountain she has climbed. Poppie always responds with a huge smile. After making friends at baby groups the sympathetic looks turn into those of intrigue and pure amazement that a baby born at just 1lb 9oz could look so well and smiley.
In the face of now seeing Poppie for more and more time without her prongs I feel a mixture of pure happiness and absolute fear. Poppie was used to having a break when she had a bath, but today was the first allotted time of having her breakfast and then in the sling without any help. Such a brave girl. And so I must follow suit. The nurses have told us to remove it for 2 hours the first day (an hour in the morning and an hour in the afternoon), 4 hours the next, 6 hours the next and so on until she only needs it at night. There is a chance that she may need it again and so we aren’t shipping the tanks out just yet but both Chris and I are so proud of our little ray of sunshine.
As a side note if you are reading this post with a baby on oxygen then all I can say is have hope that one day it will be a distant memory. We are only at the start of the journey of saying goodbye and as has our journey been full of ups and downs I know there will be many more. I will of course update on the next steps.