A poem written for preemie mummies on Mother’s Day:
A poem written for preemie mummies on Mother’s Day:
This Sunday is Mother’s Day so I thought I would mark the occasion by sharing the story of my first Mother’s Day.
Last year was my first Mother’s Day; it was an extra Mother’s Day that I shouldn’t have had, my babies should still have been tucked up inside me with my husband buying a “from the bump” card, but that’s not what fate had in store. Instead, here was Henry, still in intensive care but thankfully now making good progress, and meanwhile we were on the brink of planning a funeral for his brother. Despite the circumstances being far from ideal, I chose to look at the many positives and despite everything, for me, this was still a time to celebrate. I couldn’t wait to arrive at the hospital to see my beautiful boy who had survived against the odds to be here, and as a result I had gained an extra Mother’s Day, so how could I complain?
To make the occasion extra special I was able to do something new for Henry. For the first time I was able to give Henry his first top and tail wash, it may seem insignificant but it was amazing to just hit another milestone of something I could do for my baby. I also had a brief cuddle, very brief as Henry was a bit unsettled so had to go back in his incubator rather quickly, but no matter how brief it was, to me it didn’t matter as at least I got a cuddle which, just a few weeks ago would have been something I could only dream about!
Overall we had a good day, Henry had managed to do a bit of shopping from his incubator, buying me a nice personalised mug and when we arrived on the unit all the nurses had made cards from the babies with their pictures on, which were a beautiful treat for each of us!
This year, I am very much looking forward to waking up to my happy, bouncy baby boy at home and just having some nice cuddles in bed, okay if they come with a side of breakfast I’m not going to complain either!
When you’ve been on a journey like ours you learn to appreciate the small things so whatever we do on Sunday, I’m going to lap up every minute with my miracle baby. I hope you have a nice time too. Happy Mother’s Day!
If you have a NICU Mother’s Day story I’d love to hear it! Tell me about it in the comments below or over on our Facebook page.
Today Henry is celebrating his first World Book Day out of hospital, which also coincides with Dr Seuss’ birthday(hence the costume!) I know he’s not in school yet but as he has such a love for books I felt the need to mark the occasion by writing a blog post and dressing him up! I’ve talked before about the benefits of reading to your baby after Henry featured as poster boy for his neonatal unit’s ‘Books for Babies’ scheme in which every baby is given a book upon admission to encourage their parents to read to them during their stay. When Henry was in hospital we would read to him several times throughout the day and every night before we went home; a routine we have continued since he was discharged last April.
Whether at home or in hospital, reading promotes bonding between parent and baby, babies enjoy hearing their parents’ voices and listening to the words even if they do not understand the stories at first. As a former teacher I am all too aware of the benefits of reading regularly and have seen first hand the difference in children who read compared to those who don’t as teenagers. It is so important to instil a love for reading at a young age so that it becomes second nature as they get older. It has been well documented that children who read regularly achieve better results at GCSE level.
As you can see, all the reading we do at home is already paying off, Henry gets very excited when we sit down to read to him now:
So, as it’s World Book Day I thought I would share with you some of Henry’s favourite books, either to give you some ideas or to inspire you to read to your little ones if you don’t already.
I’ve split the list into ‘daytime reading’, consisting of board books that can withstand some heavy-handed page-turning and a coating of drool, and ‘bedtime/hospital favourites’, softback books with good stories that don’t need to be so hard-wearing.
We read a lot throughout the day and have quite a few board books through which we circulate, although Henry has some clear favourites which are as follows:
This list could go on and on as we have such a large collection; it was joked that Henry had his own personal library next to his incubator! It took a while to choose but I decided to just focus on these few favourites as they have been with us throughout the hospital journey and beyond:
Finally to end this book-filled post, since my last post I have released two more preemie books to read to Henry as he grows up and for other preemie parents to share with their children. They are available through the links below:
Did you read to your preemie in hospital? What were/are your favourite books to read to your little ones? I’d love to hear your reading stories in the comments below or on our Facebook Page.
(Note: Links to books on Amazon are affiliate links meaning I receive a small percentage of the profit if you buy through here. They are, however, all books we own and love!)
Firstly, I’m just going to put this out there: I don’t feel guilty for being a preemie mum.
One thing I hear a lot from fellow preemie mums is that they feel guilty for having a premature baby. Guilt for their bodies failing them and not being able to keep the babies safely inside them until term. I don’t feel that way and maybe that makes me a little weird! I sometimes feel like my brain is wired differently to most people, and wonder if I’m slightly on the autistic spectrum (okay as a former teacher I can recognise that I’m definitely on there!). I see things a little more black and white sometimes. When I was pregnant I followed all the advice given and looked after my body, and in that final week of pregnancy when my body was feeling tired, I listened to it, I took things easy and put my feet up. On Christmas Day, the day before going into labour, I had everyone waiting on me so I barely had to move all day, so from my point of view, I consciously did nothing wrong and therefore in my black and white mind I have done nothing for which to feel guilty; regarding the premature labour at least. That said, there are two things for which guilt does rear its ugly head and they both surround the loss of my son, Archie.
After giving birth to Henry the labour appeared to stop and I was given medication to start the contractions again so Archie could be delivered, at the time the thought went through my head: “why can’t he just stay in there for a bit longer?” I never voiced this at the time and that I regret. I’ve since read stories of twins being born days or even weeks apart and I often wonder why that option wasn’t presented to me. In reality I’m sure there was a good reason, the medical team probably knew something I didn’t and it’s not my place to question their expertise, but I can’t help wonder . . . what if?
The other thing I feel guilty about is the lack of time spent with Archie before he gained his wings. The first day was spent in a blur while the babies were stabilised and whisked off by neonatal ambulances to a hospital with a NICU where I was admitted shortly afterwards. When my husband and I arrived we briefly visited the babies, all was well so my husband went home and I got settled in the ward and proceeded with my lesson in hand expressing milk. I visited the babies later while delivering the milk to check they were okay and then retreated back to the ward where I fell asleep until 3am when it was time to express once again. Diligently I delivered my next syringe of milk and handed it to Archie’s nurse. I don’t really remember anything of these two visits except the fact they were both stable. I spent the whole night at the hospital and only spent a few minutes with each baby. Why didn’t I sit with each of them? Talk to them? Read to them? Why did I trot back to the ward in ignorant bliss? Sure, I was exhausted after 36 hours of no sleep but surely i could have spent an hour or so with them on their first night in the world. In truth I can barely remember anything about that night, the only reason I knew I handed the milk to Archie’s nurse was because she told me later. I hate that my memories of the first day are so fragmented. Maybe I was just too tired to think but I will always carry around this little piece of guilt for not spending more time with my sons on the night before they even had names, on the night that turned out to be Archie’s first and last night on earth. From the next day onward I kept a diary so I would not forget any more parts of the journey but most of that first day and night will seemingly be forever lost somewhere in the depths of my mind.
The night we lost Archie changed me; I couldn’t get the time back with Archie but from that moment on I was not going to miss any time with Henry and I made sure I was there by his side as much as I possibly could and despite that it still did not feel like enough.
As difficult as the neonatal journey was for us as parents, it was no picnic for grandparents, family or friends either. Not only were they worried about us and Henry but they were often left feeling there was little they could do to help.
Strict hospital visiting rules also mean that some family members may feel left out of the journey too, in our neonatal unit visiting was for grandparents and siblings only. Looking back, when our parents did visit they must have found it quite difficult trying to make conversation over lunch while we rapidly gulped down our food in our hurry to get back to Henry (and in my case, express more milk!), especially in the first month when things could change so suddenly. Despite the situation, however, there were a few things that relatives did which really helped us and after posting the question and gathering responses from other NICU mums on the Facebook page I’ve put together a list of these things below as well as some handy tips for easily updating everyone.
If you are a friend or relative of someone with a baby in neonatal care you may feel there is nothing you can do to help but here are a few things you can do if you have some spare time:
Here’s a handy shareable tick list (click to enlarge or download) you can share with your friends and family:
Following the early arrival of a baby, well-meaning friends and relatives will all wish to be kept in the loop to know how the little one is getting on. As parents it is hard to find the time to give out regular updates so here are some easy, stress-free ways to update those important people:
I hope you have found these lists useful. Have I missed anything? If so, please leave a comment below.
I wrote a poem on Christmas Eve during Henry’s 2am feeding session (I’m not usually one for poetry but for some reason this just popped into my head and I wanted to share!). Thinking of all the families calling the NICU home at Christmas:
As most of you will know, our twin boys were born just after Christmas on 27th December (full story here) and although the neonatal unit was clad in Christmas decorations and lights we avoided the Christmas Day festivities, thankfully, spending the day in the comfort of our own home eating turkey and mince pies blissfully unaware of the world of beeping monitors, blood gases and ventilation that would soon engulf us for the next four months. Little did we know I would go into labour the very next day.
During Henry and Archie’s time in hospital we made many friends, some of whom did spend Christmas with their babies on the unit and the parents of one of his friends have kindly agreed to share their experiences for me to include in this festive blog post.
This is Henry’s friend, Stanley. He was born at 30 weeks on 15th December weighing 3lb 3oz. The following is written by Stanley’s parents and is the story of how they spent their Christmas and New Year:
“On 15th December we had a very unexpected visitor. This wasn’t a salesman, but our premature baby boy, Stanley. Ever since Stanley was admitted onto The Oliver Fisher Unit we received nothing but hope, support, advice, tutorials, help, guidance, professionalism and knowledge. This wasn’t just from the superhero staff members, this was also a combination of other parents too. Even though, like everyone else, we were very worried about our child, this felt like a warm welcoming committee of unlimited positivity. Around the clock Stanley was attended to in every way with immediate secure staff competency. Plus the doctors walk around every morning, wasn’t a chore for us parents, but more of a hobby or interest.
The build up for Christmas was approaching fast, and if we are honest, we cancelled Christmas prematurely before we knew less information on how this unit operates. During the festive period staff were quite often dressed up in hats, Xmas jumpers etc. this included the cleaners too; such a jolly bunch. That made us feel festive. They knew that we were in there for Christmas and knew we more than likely didn’t care for it at this worrying time, but they still persevered in making this a semi-fun experience. The decorations and tree were nice too, but I always felt hungry seeing their chocolates and biscuits at the desk! We were also granted permission to place a Christmas card on top of Stanley’s incubator, which was a nice gesture. But even though this seemed like a fun environment; the jobs, procedures and tasks were still completed to maximum proficiency. We visited Stanley on Christmas day and all children received a laminated photo of themselves and a Christmas message with a small sack of presents which consisted of a toy and a brush. No one wants to work Christmas day or even have a child in hospital over this time as this is a time for family and friends to gather, but having said that, the staff treated this as a special day and were as helpful and happy as ever. We left the hospital in the afternoon and returned on Boxing Day morning, after being advised by a staff nurse that having five minutes to ourselves would do us good. She was right, yes we were anxious to see Stanley and felt guilty we weren’t there all day, but looking back now, I can see exactly what she meant. This certainly wasn’t a case of just being another patient, this was an educational process which we found very elaborating.
The period in between Christmas and new year was back to business as normal. But on New Years Eve, we insisted on spending the new year in with our son. We had Stan out of his incubator, while watching many of the firework displays, as we knew that 2016 would be very special as our Stanley will be coming home.”
So, although the neonatal unit is nobody’s first choice of Christmas venue, it isn’t all doom and gloom, the very fact that you are there means your baby has already accomplished great things and beaten the odds and that miracle alone is a huge cause for celebration. I would like to mention here, a very special group of people that brings a little extra festive cheer to the unit during the holiday season and that is the Oliver Fisher Knitting Group led by Kay Gilham. The ladies in this group not only spend their time all year around knitting bonnets, blankets, cardigans and anything else that may be required, at Christmas they work a bit of extra magic producing Santa sacks for the babies containing lovely knitted treats like teddies and comforters (as mentioned in Stanley’s story above). There are often little treats included for the mums too. Here are some examples of this year’s lovely Santa sacks:
As for New Year. . . we were by Henry’s side at midnight, watching fireworks through the window behind his incubator and reading him some lovely stories; and there was nowhere else we would rather have been. New Year’s Day turned out to be extra special for me as it was the first time I was able to touch Henry and change his nappy, it’s amazing how something so basic can be so wonderfully fulfilling at the same time. I was finally able to do something to feel like a real mum and that alone was enough to make New Year special.
Merry Christmas and Happy New Year from our little miracle!
Today our story was featured on the local radio. Listen to the full interview below:
Last month we were lucky enough to be invited back to our neonatal unit to be part of their ‘Books for Babies’ campaign; an initiative launched after discovering that only around one in 50 parents read to their babies on the unit. Every baby is now given a book when they are admitted in order to encourage their parents to read to them during their stay. In fact Henry was the poster boy for the launch and we were obviously very proud!
As a teacher I am very aware that reading to children from a young age is hugely beneficial and greatly improves attainment later on. For the premature baby it can be the only thing that brings a sense of normality to parents in the beginning; when Henry was in hospital, at first we were not even able to touch him so reading was the only thing we could do that was part of our original plan, it was also important to us that he start to recognise our voices, hoping ours would stand out as soothing amongst those performing endless medical procedures. I also hoped he would remember them from being in utero. I wanted him to hear us speaking as much as possible but as much as I tried, I struggled to just talk randomly, some people are good at this, I am not! I found there was not much to talk about when sitting beside his incubator as I spent all day at the hospital and felt I had very little to tell him except what I had for lunch! Reading books became a lovely part of our routine and Henry grew a bit of reputation for having a ‘mini library’ next to his incubator, with nurses often reporting that they had read some of his books on their night shifts!
Not only is reading beneficial for bringing a sense of normality to parents but the research carried out by our neonatal unit suggests that the more you talk to your premature baby the better their language and communication skills by 18 months. Now that’s definitely a good reason to start shopping for books!
Since the launch in October the campaign has proved pretty popular and has recently hit the local news, you can watch the footage below:
[Source: ITV Meridian News]
As mentioned in the video, I am currently writing a book for other parents of premature babies to tell them about their journey through hospital, this will be my next project now I have finished Henry’s book which you can read here . . .
If you would like to share your experiences of reading in the neonatal unit please leave a comment below.
Last week was Baby Loss Awareness Week; this is an initiative led by various charities with the idea behind it being to offer support to those who have lost babies and also help banish the taboo of talking about them and that is why I am writing this post, not for sympathy or pity, but just to give an insight into the feelings surrounding the loss of a baby, both to increase awareness and just maybe help others who are going through something similar and may find my words relatable. I also get a lot of comfort by writing down my feelings. Obviously, in light of the events of the past year this is a subject that is now close to my heart, particularly regarding talking about the loss of a baby; I like to talk about Archie, he is my son and Henry’s brother and always will be and I feel that talking about him keeps his memory alive. I think of Archie on a daily basis but with this week being at the forefront of social media and in the news it has made me reflect a little more than usual which, in my view, can only be a good thing, reflecting, reminiscing and crying are part of the emotional scars I now carry and, I believe, are all healthy aspects of dealing with grief. I read once that the scars we are left with following the death of a loved one are a testament of our love for that person and if the scars run deep then so does the love, this is so true and why I will now gladly carry these scars as they are now forever part of me. This week was important to me as often we get carried away with day-to-day life and taking time for reflection doesn’t happen often. Due to a slight sleep regression on Henry’s behalf lately I’ve spent a lot of early mornings during the week reflecting and reading various articles, while keeping myself awake for feeding, and although I appreciate the thinking time by Saturday I was left feeling a little sad and empty as I waited for 7pm to arrive to light our candle in remembrance. That’s when I started to write this post and found the act of sharing my thoughts on this digital canvas made me feel a lot better.
I really like how the week culminated with the ‘Wave of Light’ on 15th October; families across the world took part by simply lighting a candle at 7pm to join together in remembering all babies that have died too soon, in recent years it has entered the digital realms with #WaveOfLight, encouraging people to take part by taking a photo of their candle and posting it to Facebook or Twitter using #WaveOfLight at 7pm. I thought of this as a hugely positive way of remembering Archie, uniting with other parents across the globe. It was also a significant date for my husband and I, as it was a year ago to the day that we found out we were expecting twins. It really highlights how much can change in a year but with all the miracles we were blessed with on those nights back in December last year, how can I ask for more? This morning I have been blessed with lots of smiles from Henry and despite awaking with a stinking cold I feel good, having had that time for remembrance, and immensely grateful for the beautiful boy currently snuggled up, asleep in my arms.
Did you take part in #WaveOfLight? If so, feel free to share your stories in the comments below.
If you need support following the loss of a baby don’t suffer alone, Sands (Stillbirth and neonatal death charity), is a good place to start or for twin-specific loss, Tamba’s bereavement support group has been of great help to me.