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.
Before I write this post I need to state how much respect I have for the medical profession and the care that Poppie has received. Since day 1 she has been looked after impeccably, but this post is more about comparisons, milestones and Poppie’s journey so far.
Due to the fact that Poppie was born more than 3 months premature, being 13 weeks early, she qualifies to be seen by an occupational therapist at the hospital. We were first introduced at the hospital where I sat with Poppie cuddled close and given my own personal presentation about all things important to premature babies. That included ensuring that her little head was turned evenly so it moulded correctly. We spoke about Poppie’s central line, quite literally a line that you could draw down her centre, and how important it was for her to put her hands together and learn that she has two sides!
At the time I was eternally grateful and still am. However now we have been set targets for Poppie’s development and it seems like the pressure is on. At the last appointment the consultant was super happy with how Poppie is getting on – growing, putting on weight and starting to come off the oxygen. At the same time the lovely Jade, the occupational therapist who has been there with us pretty much every step of the way, was watching how Poppie moved, how she moved etc. It would appear that our gleaming proud faces about how well Poppie can sit were a bit short lived. Our explanation of Poppie’s strength when standing was met with a question of how will she move from sitting to standing as opposed to matching our glee. Also Pops didn’t appreciate being put on her tummy and so ensued a bit of a meltdown which I don’t think helped matters!
The goal is to get Poppie moving by October the 12th. At the same age as Poppie I didn’t move. I bum shuffled, but didn’t really feel the need to move far and went straight to walking. When you speak to other parents there are so many stories of babies that either skip crawling or take a long time to move at all. In fact talking to other mums of term babies gives me a lot of strength especially when I compare Poppie’s corrected age to their development. Yes they are attempting a bit more movement but I feel that up until now Poppie is one of life’s observers. Over the last day I have seen a bit more of an inclination for Pops to reach stuff, involving a few face plants. Today she accomplished her first roll from back to tummy and was so impressed with herself. She could only repeat it 3 more times even though I spent a lot longer trying to get her to repeat!
I feel very assured of the fact that Poppie will do things in her own time. She is such an adorable character, quite clearly communicates with us about her needs and is growing up fast. I sometimes feel cruel getting Poppie to do ‘tricks’ but at the same time want her to reach the goal that is being set. I think that every parent, on some level, worries about what their baby can and can’t do. But they don’t have a date and time (9am on the 12th.) when something needs to be achieved.
Obviously there will be updates on her progress and I hope that we can reach her target, but if not I will push the anxieties aside. There is so much love and happiness that oozes from the people close to our journey when they are around Poppie. Really I wonder what on earth can exceed such an amazing trait.
What a year! This time last year our worlds were turned upside down as Poppie hurtled into our lives. At just 27 week + 1 day pregnant a check-up by the amazing midwives at St James hospital turned into a visit to the delivery suite, followed by an emergency C-section and then Poppie arrived at just 1lb 9oz! We celebrated with a big party at my dad’s house last weekend and then today opened up all of her presents followed by a visit to tropical world.
Poppie’s arrival was so unexpected that obviously I turned to goggle and a specific statistic has stuck with me. 90% of babies born at 26, 27 and 28 weeks make it to their first birthday. She did it! In that moment a year seemed a million miles away but we are here and now it’s time to do the equivalent of shout from the roof tops.
Celebration of this little life is very much name of the game and has made me reflect on the highs and lows of the past 12 months. Looking back at photos of Poppie when she was first born seem unrealistic, especially when you compare them to the smiling, happy little girl in front of me. I don’t think that a year in my life has held quite so many tears and happiness sometimes only moments apart. At about 2 and a half months into our journey we met another amazing mum, who had a baby headed home on oxygen. She writes an amazing blog about her experiences of being mum to premature twins, grief and the challenges her little family has overcome.***
One of the huge parts of this year has been the sheer amount of love from near and far. When Poppie was born I felt very far removed from the situation, which may sound strange seeing as though I am her mum. This might sound funny but I felt like I was caught completely off guard as I was most definitely not expecting my baby so early. I managed to catch a glimpse of her as she was whisked away after being delivered. Pops then had to take a trip to the other side of Leeds where she would receive appropriate care for a baby so early. I managed a squeeze of her foot before almost 48 hours passed and with the help of an amazing midwife at St James I could see her again in her incubator. This was to be her home for a few more months. Those first few days are all a bit of a blur but a huge milestone was on day 6 when I got to have my first hold. Proud as punch doesn’t cover the feeling and I will never forget that moment. I looked forward to skin to skin and loved the feeling of holding her so close. During this time we were inundated with messages, gifts and cards. Every time I had a wobble I knew that someone was on the other end of the phone / whatsapp / just a train ride away. The words of congratulation on becoming a mum made the situation real and gave me so much strength to keep putting one foot in front of the other.
We continue to receive so much love and support. The amount of presents are testament to that, even if Poppie was far more concerned with the wrapping paper and cards! On days like today I feel so thankful for everyone who has helped us on our journey and I know will continue to do so.
We have celebrated today with such a super little girl. Our little miracle has come so far and I am so excited to see what the next year will hold for us. I am sure we will see more ups and downs, and there is a definite anxiousness about this next winter. However as her personality grows and her cheeky smiles brighten everyone’s day I cannot wait to see what the next year holds for us all.
***Check out Amy’s blog at https://thisismybraveface.blog/
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.
Holding Poppie close is one of my favourite past times. She has just developed the idea of cuddling and will rest a tired head on my shoulder. Complete heaven for me. So prolonging that feeling of having her close has been amazing through popping her in a sling. A world that you only encounter when a little one enters your life.
I am so lucky to have friends that already have babies and could teach me about slings, the right way, the wrong way and essentially how to get started because it really is a minefield! To start with Poppie and I wrestled with a stretchy, which was amazing for her size as it supported her small stature. But I was not good with so much material. For those that are not familiar with the term a stretchy wrap is essentially a long piece of material that you wrap around yourself and baby. Then ensued a visit to our local sling library. Yes they do exist – a place full of slings and a lovely lady called Nicola in her front room educating me on what is best.
After an intensive hour we left with a connecta and I fell in love. The picture above is Poppie and myself using the connecta. It took a while to wait for the giraffe love print to come back in stock, but worth the wait. Carrying Poppie to the shops, for a walk in the park, up to Headingley for our baby classes brings us closer as I can chat to her about what she is looking at. Walking out of the house with just Poppie and the little oxygen tank on my back is ten times quicker than building the pram and having a battle more recently in the rain. I love how we are adventurers in the sling, being able to walk over rocky terrain, visit the Askwith show in a field or more recently jump over a rather large puddle!
I don’t think that I will ever bore of holding Poppie close. Being such a precious bundle in our lives means that I want to hold her close forever. After having to leave her in the hospital for her first few months on this earth baby wearing gives me the opportunity to make up for lost time. As long as she continues to be so cosy we will carry on our adventures.