Yesterday, Tuesday 3rd April marked a huge achievement for Poppie and another big step in the rollercoaster that is life after NICU. She was discharged from the physio as they were super happy with the first steps that she is taking.
As we approached the hospital yesterday, through familiar doors, past the familiar reception desk I was struck with a multitude of memories. When you have a baby you don’t ever imagine not just taking them home, but this was the reality that we lived with for 3 months post Poppie’s birth. For the first month walking through the Clarendon wing doors at LGI became a totally normal routine. Yesterday when we turned right to the outpatients I was overcome with how we how far we have come on our journey. I remember vividly the moments sat with Poppie on the neonatal ward when I felt like home was such a faraway point. One moment she would be doing amazingly well only then for her oxygen requirements to go up, back in the intensive room with an infection and I would feel like I would never have my baby where she belonged. I couldn’t see past that hour, that day, that night, dreading a phone call. Now, as I watch her feisty personality grow, I really want to go back and shout at my past self that it will be ok. I would need to shout, otherwise I don’t feel that I would listen! Yes this is going to get tough in ways that you could never imagine, but ‘just keep swimming’ because the moments I have now and have done since she was born are even more precious because of what she has been through. I hope that Poppie’s story can offer some hope for other babies stuck in the two steps forward, one step back conundrum.
There is always a small worry at these appointments that Poppie won’t ‘perform’ but I feel like she sensed the importance of showing off. Effortlessly she stood independently, and then just for balance used Jade (the physio) as support to take a few steps. Demonstrated her fine motor skills pressing buttons and working out how to fix the Lego pieces together on the wall. Yes it would be amazing if Poppie was fully walking, but it is only a matter of time. I was a late walker and also a bum shuffler so why can’t she follow in her mum’s footsteps? Today, taking Poppie out for a walk, I tricked her into taking quite a few steps unaided but as soon as she realised she gave me a death stare! For Poppie it is all about building her confidence and her learning that she can walk as fast as bum shuffle. Right now bum shuffling wins out on how fast she can move!
As much as this post is one of celebrating how far Poppie has come, it is also one about how amazing the care has been from the NHS. From the day that Poppie was born until now she has had the most fantastic, one on one, specialised and personalised care that you could ever want or need. When she was born there were two teams of people in the delivery room and one on standby: the delivery team, the neonatal team and the kidney team (just in case something happened with me). From that point onwards, and although at times I found the two steps forward – one step back process frustrating, every NHS professional that has dealt with Poppie and our family have been honest and treated us with the upmost respect. Often the NHS suffer bad press, but in the small windows that I have seen they deserve nothing other than gold medals.
It would appear that the terrible twos have entered our life a little earlier than expected! It would also appear that only mum is on the receiving end. We are going through a stage where I am not flavour of the month and everyone else in the room is … a difficult pill to swallow for me but hoping this is one of the short lived phases!
Back to the temper tantrums. Ranging from lying on her front, sliding back in a fit of rage, screaming to arching her back, wriggling and refusing to put her pyjamas on! It may seem a tad cruel but watching a meltdown is rather amusing. However attempting to get her into the bath and then pyjamas is no laughing matter. I think the latter is contributing to the anti-mum stance as inevitably it falls on mum to do those necessary jobs of keeping the small person alive!
During a phone call to my mum, whilst laughing about the current state of affairs with Poppie ruling the state of order, she reminded me of something. In the early days of Poppie being born my mum reckons that she took one look at the world and thought “I’ll be having you!” The little fighter in her back then made it past the bad days. And there really were some bad days, especially when she contracted bronchiolitis and was re-hospitalised. Now the little fighter in her is really just making a point that she is here, alive and to be heard. One would think a reasonable request from someone who has such a story to tell. However living with it makes life that tiny bit tricky!
Tonight is a case in point that she is here to be admired. We ventured out for an early tea at a local fish and chips restaurant. She smiled at everyone that looked at her, charmed all the waitresses and was very much her best self. I love seeing her little personality grow, even the diva side. Especially the diva side, because it is the reason I have such a little feisty fireball and the quality that ultimately makes us smile the most.
I feel like mountains are moving when Poppie reaches a new target and we are so ever closing to the big one; walking. Over the past few days we have seen standing without holding on. The best part about this is her face, looking at you so proudly, when she has achieved 5 seconds of independence.
Since just before Christmas she has been using her walker to totter around, bashing into things. I am not sure that she will ever learn the art of steering! We have been worried that walking on her tiptoes is not ideal, but her standing is always even, so just letting things work themselves out. Well, until we are told otherwise. Most recently she has been standing with no hands. A huge achievement. Last weekend was her first pair of shoes, she is growing up so quickly.
For every milestone that Poppie achieves it takes a lot of time for her confidence to master the skill. I hear some parents say, once she took her first step that was it for us. Not quite the same in our household. Encouraging Poppie to move took weeks of putting things out of reach and watching her whole body tense, screwing her face up as she couldn’t reach them. I felt so mean, but eventually we noticed that she moved a centimetre on our wooden floor. Next it was two centimetres and now she shuffles everywhere, not allowing anything to get in her way. She wriggles and manoeuvres herself into all sorts of places. Next she started pulling herself up and with some amazing sound effects would cautiously venture up the stairs. All of this has taken a lot of time and practise by Poppie. I am not sure whether the fact that it takes a while is a feature of prematurity, but regardless I feel like shouting from the rooftops every time I see something new.
Inevitably this takes me back to looking at the pictures of her when she was tiny, laid in her incubator, watching the machines support her breathing, wishing and hoping for the day I could take her home. Never in a million years could I imagine sat on my sofa, almost 18 months later, writing about our story. I hope that anyone who finds themselves in the position we were last year holds onto that little glimmer of hope when it surfaces. The repetitive nature of my days, visiting Poppie on the ward, were hard. But even now I can remember the pure glee I would have giving her skin to skin, popping her down my top and reading to her. The moment when the room would be empty apart from the other babies in their cots / incubators but I would be there chatting to Pops. I will never be able to block out the moments when everything felt like it was going backward, especially when Poppie would get poorly either in or out of hospital. Now these moments of pure joy are savoured and shared adequately on social media!
This summer I am embarking on my first ever sporting challenge – a 46 mile bike ride around London to raise money and awareness for Bliss. The Prudential Ride London is on the weekend of the 28th July, so plenty of time to get ready, but after my first ride out think I need a tad more planning.
Since having Poppie I am still trying to rid the last bit of weight around my middle that is proving a tough one to shift. I am hoping that focusing on a positive change in lifestyle, focused around being outside and also testing myself spinning, to build up my stamina will help to shift a bit of the wobbly bits! As well as attempting to improve my physical fitness I swore to myself when I was on maternity leave that I would fundraise for Bliss (a charity that supports babies born premature or sick). Throughout the time in hospital and the milestones I feel that Bliss offered a crutch of support. They were a place to go for advice, inspiration and knowing that our journey was very much shared by others.
Now to my preparations. The first and last time I attended a spinning class I fell off the bike! An embarrassing moment where I didn’t understand how to increase the resistance, resulting in my legs going much faster than my head could compute. Follow that and I had fallen off the bike with the instructor dismounting his to check I was ok. My brother, who was with me at the time, could not stop laughing and I was very much the colour of beetroot. All eyes had turned to me and how ridiculous it was that someone would bump their bum from the seat. I hope that this story paints the picture of the sort of person I am when it comes to exercise …
Day 1 of my training was me on the bike, freezing this Saturday morning. At one point I squealed, “my fingers, my toes!” Quite clearly not in the right attire. I didn’t manage too far, only 4 miles in about 25 minute but I have 6 months to get myself a little more prepared and hopefully not make an embarrassment of myself on the day. A bit like the stubbornness I see in Poppie, almost daily, I am determined to train and do everyone proud on the day.
The past few weeks have been hectic to say the least. Someone commented that being this busy is feeling like your feet aren’t touching the ground and quite literally this sums up our little family. Now I find myself with a spare moment to catch you up on our antics.
Poppie is flying high and has impressed the physio and OT so much that if she carries on moving about like the trooper she is then following the next appointment we could be discharged! Her latest trick is not only moving like a whippet, but pulling herself up. There was a stage of Poppie standing, looking proudly, but then shouting so that you could put her back on her bum! Thankfully that was a quick stage and the ups and downs are becoming more and more competent with a bit of cruising in for good measure. I love Poppie gaining more and more independence but she is really quite fearless, with no looking back when she ventures onto pastures new. This is particularly stressful when she sees a dog as she bounds over to day hello!
Last weekend was another huge milestone for us, having Poppie’s christening. Typically little ones are baptised before they are one, but what with a disorganised mother it took a little longer than it should have to plan. Having said that I think that Poppie was merely waiting for her moment in front of a crowd. An adoring audience watched as she rubbed the ointment from her head, waved like the queen and giggled at the right moments. A true treasure. Poppie has learnt that the way to please a crowd is to smile and laugh, a quality I hope she never loses.
On Friday 17th November it was World Prematurity Day. We represented on social media with pictures of Poppie over the past year. Reflecting on how much she has changed is just amazing. Last World Prematurity Day I remember looking into Poppie’s crib and thinking I really want to do something to mark this day, but it was all so new to us. She had only just come home and was so small and vulnerable. Now she is still pretty small, but fierce with enough attitude to fill a room. This meant that this year I wanted to embrace doing something to not only raise awareness and money but also to mark how incredible a journey we have come along.
My fundraising has been to support Bliss, a charity raising money and awareness for babies born sick or premature. So last Saturday we supported Bliss Little Lights Walk with a potter around Roundhay Park with local mums and friends. Last Friday my school had agreed to host a non-uniform day, splitting the money with Bliss and Children in Need. I organised a cake sale and overall £1100 was raised with £550 going to each. Independently for the Bliss Little Lights Walk we raised over £100 so not a bad couple of days doing our bit.
Next up is Christmas and last year I missed a bit of a trick dressing Poppie in ridiculous outfits. I think that I just wanted to hold onto every moment and dressing up was not on my priority list, especially as she had been back in hospital. However this year with more time to plan and think watch this space!
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.
It has finally happened – Poppie is on the move! It has taken a long time, but finally my little girl does not look at me in pure frustration and clench her fists but actually reaches and achieves what she wants!
If I am honest I didn’t have as much faith as I should have done based on her previous ventures that we would reach the ever nearing 12th October and be able to tell our physio that she can indeed move from A to B. Throughout Poppie’s whole stay in intensive care there were moments when I thought we would never leave. The saying of 2 steps forward 5 steps back embodied our whole experience. At St James’ Hospital they have a corridor, and at the bottom is room 5 leading up to room 1. When you reach room 1 you are ready to head home. On arrival the nurse explained the concept to me, which at the time I loved, but as the weeks passed by I became so envious of all of the babies bypassing us. “Our time will come” they used to say, but Poppie was definitely in no rush. We started in room 4, after a few weeks reached room 3 only to return to room 4. Poppie picked up a bug that went to her lungs and so needed more intensive treatment, which room 4 offered. It took a while in room 4 before we ventured to room 2 and then peaked at room 1 and an overnight stay before we headed home. At the time I couldn’t believe we would leave. Then with a huge set back just 2 weeks after we left the hospital with a stay on Paediatrics Intensive Care I never really thought I would see the day when Poppie was independent enough to move herself. Determination has got her through all these ups and downs, and she is not stopping just yet!
Fast forward a year and we have the most inefficient art of bum shuffling. At first there were shouts of frustration and a longing look at me to move the toy she couldn’t reach. A visit from our lovely nurse suggested that we try her on the wooden floor to encourage movement. And voila it happened! Poppie reached a bit further than normal and whilst leaning on her shins she shuffled. Needless to say we were ecstatic. Fast forward a couple of weeks and now there is intent in her shuffling and no more longing looks. There is no speed to the shuffling and at times the leaning has gone so far that Poppie has fallen on her stomach, but it is all a learning curve for this little wonder.
Such a huge milestone has been hit and we couldn’t be prouder. Many people have warned us, “it’ll be a nightmare when she starts to move” and potentially it will when she gets a bit faster or starts to walk, but for us it has been such an amazing experience to watch her learn and become more independent. She is a true inspiration for me every day.