It has been a while since I’ve added a new blog post, mostly due to Henry being an active toddler resulting in a lot less free time! So today, while Henry has a short nap, I’m frantically typing away as I really wanted to write post in honour of World Prematurity Day with the theme of #PrematurityIs; a campaign led by Bliss to encourage preemie parents to share what prematurity means to them. This kicked off at the beginning of the week with a touching video which I am very proud to have been part of:

Throughout the week I’ve been sharing what prematurity means to me through the Miracle Babies Facebook page, which I’ll share below along with some points shared by other parents on the page.

To me, prematurity is a lot of things, here are a few snippets of the journey that stand out . . .

. . . going into labour at 22 weeks into a twin pregnancy and giving birth at 23+0 weeks.

. . . expressing milk every 3 – 4 hours (including throughout the night).

. . . barely being able to see what my twin boys look like due to them being covered in medical equipment.

. . . saying goodbye to my son after two days in hospital.

. . . waiting three weeks for a cuddle with my surviving twin.

. . . being excited to breast-feed my son after 12 weeks of waiting.

. . . bringing home my surviving twin boy after 4 months in hospital and being immensely grateful to the wonderful doctors and nurses who made that day possible.

. . . counting down the weeks into my current pregnancy, hoping for a full term delivery for my rainbow baby.

I could list many more but those are the key points that stand out in my mind. Despite the above, this is Henry when he was born and now at 22 months old, happy, full of energy and, thankfully, oblivious to his rough start to life:

Here are a couple of stories that have been shared from our Facebook followers:

. . . (going) into labour at 26weeks, into a twin pregnancy, 38 yrs ago, this was extremely frightening. First pregnancy as well so even more worrying, not really knowing what to expect. Those days this sort of thing didn’t happen very often!!!!!!

. . . I’ll never forget the day I was discharged from the hospital. It’s so hard when you are discharged way before your baby is. I remember the first time leaving the building and seeing a couple of dads walking in with empty car seats and balloons

And lastly, I’ll close with some words from a good friend I made this year through our shared experiences, a fellow 23-weeker mummy to surviving twin, Leo:

Prematurity is . . .

Leaving the hospital every night without my baby for 130 nights and for around two thirds of that feeling like we were living on a knife edge.

Phoning the hospital every night and morning wondering what were they going to say and thinking if my babies nurse didn’t come to the phone in 30 seconds there must be something wrong (silly I know)

Other parents asking “what gestation is your baby?” and saying 23 weeks and waiting for there face to drop and now I say it with pride against the odds you did it Leo!

Being shown care and such kindness by people I didn’t know before other parents, nurses, midwifes, doctors and consultants.

Here’s Leo just after he was born and now, looking very healthy and happy!

Happy World Prematurity Day to all preemie parents, miracle babies and the angels whose journeys were cut short! Please share and help raise awareness.

I have been meaning to write this post for a while as I wanted to explain the significance behind the butterfly and dragonfly used in the logo for this site.

Firstly, the butterfly represents Henry. Shortly after Henry was discharged a lot of neonatal units, including ours, adopted the butterfly symbol to indicate a surviving twin. If staff or other parents see the butterfly emblem on an incubator they would know that baby was a survivor from a multiple pregnancy. In addition to this, I have often likened Henry’s journey to that of a butterfly growing inside a cocoon, except Henry’s cocoon was see-through and made of plastic! It was a pretty amazing transformation from when he was born to the baby discharged four months later.

The dragonfly represents Archie. A nurse from the bereavement team at the hospital gave us a beautiful book called Waterbugs and Dragonflies. It is a book designed to explain death to young children, you can read the story online here. It gives a lovely analogy of a waterbug’s transition into a dragonfly being similar to a person dying and going to an unknown place above. The metaphor resonated with me and so whenever I see a dragonfly, I think of Archie.

The colours? The colours in the logo are also symbolic; each of the boys were wearing woolen hats at the beginning to hold their ventilator tubes in place, Henry had a green hat and Archie had a blue one.

Just a short post this time, I’m hoping to get back into writing soon, although Henry keeps me very busy now-a-days!

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.

How can friends and relatives help?

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:

• Batch cooking meals – The last thing you have time or energy for when your child is in hospital is cooking and thankfully we were provided with a lovely selection of home-cooked meals frozen by my sister-in-law and a two-course feast from one of our cousins. This was so helpful, and something that was reiterated by several other parents whose family members did the same.
• Childcare for siblings – Childcare was not something we had to worry about, but for a lot of parents the baby in the NICU is not their only child and they benefited greatly from grandparents and friends offering babysitting services, allowing them more time in the hospital.
• Offering lifts – Some parents cannot drive and visiting can be difficult when relying on public transport, especially during public holidays. In addition a lot of mothers of premature babies may have had a caesarian section meaning they are not allowed to drive for six weeks. Offering a lift to a struggling parent can mean a lot, not to mention the benefit of a listening ear on the car journey to the hospital.
• Updating friends and extended family – As a parent, it is difficult to keep everyone updated (see more on this below) so having a chain of updates running through the family was very helpful, even Henry’s great-grandma was able to play a role! We only needed to update grandparents and a few selected friends who then cascaded this to others.
• Housework/Gardening – Chores don’t feature in the priority list of parents with a baby in the NICU; our housework was completed to a minimal standard (although as we were never home it didn’t really get too dirty) but the gardens, however, did not get touched and by the time Spring arrived we were very grateful to the in-laws for setting to work, mowing the lawns and de-weeding our mini-jungles!
• Odd jobs/helping with to-do lists – There are many jobs that you may have been planning to do before your baby arrives and a premature baby quickly puts a stop to these. Unfortunately some items on the to-do list still have to be done; for us, this was selling our old car and thankfully a family member took charge with this and had it sold within a couple of weeks after organising viewings and test drives. All we had to do was sign the paperwork.

Here’s a handy shareable tick list (click to enlarge or download) you can share with your friends and family:

Easy Ways to Update Everyone

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:

• Update chain – Only update a few select people and ask them to cascade to others who will in tum pass on to more people until eventually everyone knows what is happening. This is particularly helpful in the early days before you have time to fully process the situation.
• Shared photo album – You will inevitably find yourselves taking lots of pictures of your baby during their time in hospital; by adding these straight to a shared album using an app like Google Photos you can share the link with family or friends and everyone who has joined the album will receive a notification when a new photo is added and be able to watch your baby making progress. Sometimes a picture says 1,000 words!
• Group messages – Creating a messaging group in an app like Facebook Messenger or Whatsapp can be beneficial for updating a small group of people at once, you may want to be careful about including too many people in the group, however, as the conversation can be difficult to keep track of if lots of people are responding or asking questions at the same time.
• Social Media – If you are a Facebook user then this can be really useful for updating large numbers of people at once although it can be a little overwhelming trying to respond to lots of comments and there may be the expectation to update regularly. Personally I couldn’t face using Facebook for the first few weeks, as Henry was so extremely premature I was too worried to even contemplate updating my status! Once he was a bit stronger, I started to add the odd picture or video and I know these little random updates were appreciated by friends and family.

I hope you have found these lists useful. Have I missed anything? If so, please leave a comment below.