On World Prematurity Day…

On World Prematurity Day…

My elder daughter was born nearly six years ago nine weeks early and weighing a tiny 2lb. To look at our tall, strong and capable child now you really would not know and that is something for which we are incredibly grateful. However, we as her parents do see reminders of her arrival daily but they are relatively minor, especially six years down the line. We are also pretty astonished as back in November and December 2011, and January too, we honestly did not know if we would be bringing her home.

There was never any reason throughout the seven months of my pregnancy to consider that I would have my baby prematurely. When I went to the hospital on the Monday for a routine appointment for the gestational diabetes I was controlling well we had no idea that later that morning we would meet our baby. My appointment was at 9.15am in the Women’s Centre at Gloucestershire Royal and I was the first appointment of the day. My baby’s heart rate had always been strong at every midwife or GP appointment I had been to so I was surprised and optimistic that there would be a correction when the midwife who did the pre-appointment checks for me said that it seemed to be dropping. Still there was no great concern but rather the staff were cautious and took me upstairs to try two more Doppler machines just in case there was a fault with one of them.

I remember thinking that at any moment they would realise the error and send me back home to crack on with the jobs on my To Do list. My husband and I agreed that this appointment wasn’t one that he needed to attend as he had already taken time out to be there for the scans I had had. I was informed that as my baby’s heart rate was dropping she needed to be delivered and had I had a general anaesthetic before? So, my appointment was at 9.15am and at 10am darling Jemima was born. My husband arrived just in time to be informed that she had been born. Really it was a mixed blessing he arrived when he did as although he wasn’t there when it happened, he wouldn’t have been allowed in theatre and to sit and wait outside knowing how serious it potentially was would have been heart-wrenching. Looking back, her movements had reduced the previous week and I had been counting her kicks but they were as they should be, just less strong. Then they picked up and I believed all was fine. My bump had been small and I had queried that with the midwife but because I was slim it was thought to be fine. Our concern was that I would have a big baby due to the diabetes. We smile at that irony now.

Once the anaesthetic wore off we went up to the Neo Natal Unit and met our teeny tiny fragile baby in Intensive Care. She was beautiful and very small. She looked peaceful, serene even, and I felt an overwhelming urge to protect her all I could. The shock of her arrival meant I couldn’t fathom that she could be my baby but she was so minute, delicate and vulnerable that I think it was a human instinct to look after her. Her eyes were inky and large, she had fair lanugo, and she was very thin with wrinkly skin, all ready to pad out and grow into.

She had many tests over the following weeks and each time we thanked our lucky stars that she was well. Not out of the woods but she was well. Her remit was to feed and grow until she could maintain her temperature without help from an incubator or hot cot. That is not to say that it was a smooth and simple journey. Leaving her in the hospital that first time was the hardest thing; the primal urge to not leave my baby was overwhelming and I howled as we left after the four days I stayed in.

I would stay with her all day every day, holding her when was best for her rather than when I wanted, and when we woke up in the morning we would phone up to see how she was. We were very aware that tiny babies are vulnerable to infection and that can have serious consequences. So we lived day to day through to the end of November and into December as outside life stepped up for a few weeks, and then into January towards her due date, with my husband visiting before and after work each day, helped greatly by his lovely and understanding colleagues, who covered some of his duties so he could hold or even just see his baby. Jemima got bigger and stronger and each ounce she gained was a joy.

Stepping into a NNU is surreal – steady beeps of machines and an intensity and quiet you rarely get elsewhere. There are rules which you learn quickly: outdoor clothing to be left in the parents’ room, hands to be washed in hot water and squirted with anti-bac gel on entering each room, same after touching medical notes, no looking at other babies due to patient confidentiality, and then the other things you realise: everyone has a different reason for being there and is managing heightened and extreme emotions so sensitivity is paramount. Some of the experiences I heard were heart-breaking and the strength the parents had found to cope and endure was immense and admirable. The staff really were incredibly dedicated, knowledgeable and caring.

There was information from Bliss available to read and ways of finding out more should we need it. Now there is the brilliant Hope group who visit the unit regularly to listen to and support new parents. We had wonderful friends and family who kept in contact, even visited us to help us at home, and this gave us the strength we needed at such a worrying time. After eight weeks of feeding, growing and ups and downs, Jemima’s iron levels fell to a level which needed help. We dressed her in her best tiny baby sleepsuit and prepared her for a blood transfusion. It was not ideal but it was necessary. Over four hours she received a teaspoon of blood and we watched her skin become flushed pink. Two days later, at 4lb 7oz she was double her birthweight, was maintaining her body temperature, and was discharged. That day, the 17th January, really was the happiest of our lives!

Prior to November 2011 we had very little awareness of premature birth and the risks associated with it and now, from October onwards, my Facebook feed has frequent reminders that the 17th November is World Prematurity Day, the aim of which is to raise awareness. Babies arrive early for many reasons and the risks associated with premature birth are great. I said that we have almost daily reminders of Jemima’s early arrival. The main one is that she is very long-sighted and so wears glasses. She has done since she was 17 months old and we were just relieved that there was no greater legacy from her low birthweight and prematurity.

 

She didn’t receive enough fluoride when some of her teeth were still forming and that has caused four cracked molars in her milk teeth. She has one slightly discoloured incisor from where her feeding tube used to rest on the tooth bud. So we take extra care brushing her teeth. Our dentist has assured us that her adult teeth should be fine.

The NNU staff remarked almost six years ago that she is a determined character and that is something we have had to remind ourselves of over the years as the same stubbornness and wilfulness that are at odds with what we sometimes want her to do are the very same attributes which made her strive to survive back when she weighed less than a bag of sugar. So, when people remark on how tall she is, I nod and add something along the lines of her father being tall. Really, inside I am bursting to say, “Isn’t she just? It is remarkable, she is remarkable, nature is remarkable for how she has grown!”, and when she masters a new swimming stroke, or runs fast in a race, or dances with grace and accuracy, I want to cry with pride, love and awe that my diddy dot, who saw a physiotherapist until she was 18-months-old as she was slow to walk and later on had difficulty running, does these things and does them well!

Little things over the years have made me laugh on reflection: although she slept well at night (in Neonatal her feeds were spread out to be every four hours as soon as possible as feeding used the precious energy she needed to grow) she did not sleep during the day at all with the exception of the supermarket checkout. Laid back in the baby trolley top (directly on a blanket washed in non-bio at 60°c of course, like everything that touched her skin for any length of time for her first year was as her immune system was so weak – babies get their immunity from their mothers at 32 weeks gestation) her eyes would close as the rhythmic chimes of the barcode scanner are similar to the sounds of the hospital monitors.

She had a toy teddy given to her by an organised friend with ‘Born in 2012’ stitched on to its front. That was the plan! We donated it after a while in 2012 as it really wasn’t accurate! When our second daughter was born in August 2013 I checked with the health visitor that she didn’t need to wear a hat all the time as her sister had to do so day and night for her first six months or so. The health visitor sensitively ran through the differences between having a premature baby and one at full term. That is something which has been the biggest blessing following Jemima’s arrival. Tests were made and the cause of her growth restriction was not found. On the day that Jemima was born, three obstetricians came to see me – the one who delivered her, the one who made the call for her heart rate to be investigated and the one I was meant to see at that early morning appointment and each of them talked about when we wanted to have another child. Not if but when. They must have known the optimism and positivity that gave us, and it made me feel somewhat absolved from blame for not keeping my baby where she should have been (a common thought I understand).

So when Jemima was about 18 months old her baby sister was born. Her growth was monitored but she grew well and was born at 39 weeks on the 50th centile. She met all her milestones on or before the books said and I discovered what it was like to just enjoy a baby without the concern and all the medical appointments and check-ups. The best thing has been that the girls are the best of friends, they play together beautifully. I think we just seem to have strong-willed daughters and that is fine as we know that without that we might not have the family we have. They are both determined, they bring us immense joy and they also bring us an extra appreciation of how fragile life can be and how precious it is.

Jemima’s prematurity and low birth weight has taught us a lot. It made us not worry, strangely enough. It has also made us worry a lot more about other things but it made us more relaxed about milestones and achievements than I think we otherwise would have been with our first child. We were aware of the many difficulties low birthweight children can have and so we knew that if our daughter could reach her milestones at some point that would be wonderful and as long as we gave her the opportunities and encouragement she needed then we couldn’t ask for more. And we couldn’t ask for more, really not. One day she might appreciate how very proud of her we are but actually at the moment she has no idea that once upon a time she was so delicate and fragile; hopefully she just understands that actually she can do pretty much anything she is determined to do.

A Guest Blog from Louise Lowe

Louise works part time as a primary school teacher and lives in a Cotswold village just outside Cheltenham with her husband, Pete, their two daughters, Jemima and Amelia, and their friendly ginger cats, Charlotte and Milo. 

Find out more about Bliss here.

Find out more about Hope here.

 

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