Premature baby feet

Parents of Premature Babies: What you need to know

January 31, 2017

I wrote the title for this post back in October of last year, but that’s as far as I got in writing it. You see no one plans on their children being born prematurely. It’s just not something that you can factor into your life ‘just in case’.

My husband and I had IVF. We made the decision to put two of our embryos back inside me as we wanted the best chance possible to conceive. We were very lucky that both embryo’s took and we were blessed with twins.

Knowing what we now know, that our children would be premature, would we go back and change anything?

No.

The reason is because nothing we could have changed would have made the outcome any different. I guess we could have chosen to only put one embryo back, but that could still have resulted in a premature birth.

Our children were born six weeks early via planned c-section. We knew pretty early on in the pregnancy that the chances of me being allowed to go into labour naturally were slim and by 24 weeks we knew this would never happen.

One of our twins had stopped growing.

It was terrifying, but it sends me right back to our very first scan when we were told by our consultant at the IVF clinic that there were two sacs, but one was very small. We were told to expect to only see one sac at our next scan.

It was devastating. Knowing that there was nothing we could do except wait.

The next scan gave us a glimmer of hope as there were still two sacs and both were a little bigger than the previous scan.

As the weeks went by, both of our children grew and grew. They were both on the small side, but at each scan they were ever so slightly bigger than the last.

Then we were told that twin 2 hadn’t grown for a while.

It felt like a knife had been plunged into my heart. My breath was taken away. I felt hot. I had butterflies in my stomach. I didn’t know what to do except cry.

Our consultant was amazing. She always explained our options to us and made it clear that she didn’t want us to go beyond 36 weeks. We never made 36 weeks anyway!

I remember going to the hospital for a scan on a Friday, and being told by our consultant that she was going to see if there was a space available for us to have a c-sectoin the following Tuesday.

It was surreal.

As the consultant left the room, my husband and I just looked at each other, and I cried. Again!

I won’t go into the detail of our birth story. You can read all about that here if you want to.

Premature baby feet

What I wanted to do in this post was try to offer some practical advice to those of you whose children are premature.

They’re your children

The doctors and nurses are there to do a job. Their job is to look after your children and to provide them with all of the medical care they require to help them survive and get strong enough so that you can take them home, but, it’s important for you and the doctors and nurses to remember that you’re their parents.

You’ll probably feel pretty helpless. You’ll watch other people taking care of your children, but there are still things that you can do. You can talk and sing to your children. You may not be allowed to have physical contact with them straight away, so it’s important that they hear your voice.

When you’re able to, you can do their ‘Cares’. This means changing their nappies, washing their faces and bodies etc. It might not seem like much, but it’s something positive that you can do.

Parent Rooms

It’s always, always, always worth asking and persevering in asking about your rights to stay in the hospital. My husband and I were miles away from home as our local hospital had no room in the neonatal unit for our babies. so we were sent to a different hospital. If it hadn’t been for the cleaner in the hospital we would never have known about the parent rooms. I’ll always be forever grateful to that lady.

Initially I was in a side room on my own in one of the wards. Thankfully the nurses let my husband stay too, but we knew this wouldn’t be forever. At the end of the day it is a women’s ward, but when my husband said he’d sleep in his car, rather than drive over 2o miles home, the nurses allowed him to stay.

My husband asleep in a chair

What we didn’t know was that just around the corner from the neonatal unit were three empty parent rooms. A bed and a bathroom. That was all we needed. I was feeling rather emotional at the time, so the cleaner asked the nurses for me. The nurses seemed quite put out, but I wanted to be close to my babies and wasn’t going to leave them. They agreed to let my husband and I stay in the parents room, but they warned us if another parent whose child had more severe needs than ours needed the room, we’d have to leave immediately which I understand.

Free Food

In Wales if you’re a breastfeeding mum and you’re a patient in the hospital, you’re entitled to free meals. Again this wasn’t something I was aware of until the cleaner told me. I was given a voucher each day by the nurses and allowed to eat for free from the canteen. You may think that’s not important, but when you consider that we were twenty miles away from home, on a pittance of maternity leave pay and my husband wasn’t earning because he’s self-employed, the free meals made a big difference to our bank balance. It’s a shame this can’t be extended to dads as well, but we just made sure our portion was pretty big and my husband and I would share a meal.

Car Parking

The hospital where our girls were born had free car parking, but when they were transferred back to our local hospital, we were charged for parking every day. Our girls spent a total of 27 days in hospital and my husband and I were there 24/7. You can imagine how much our parking bill was and why we had to use a credit card to help pay for it. Thankfully after speaking to the car park management, we were issued with free parking, eventually.

Visitors

Don’t be afraid to say no. I wish I’d said no more. I was on the bed in the recovery room after our girls were born. I hadn’t seen them yet as they were whisked away immediately, and yet I had a room full of well meaning relatives who had seen my children before me. Not only that, but whilst I was hiding behind a curtain desperately trying to express milk for our babies, I could hear the footsteps of our visitors a few feet away from me which felt like added pressure.

I needed time to get to know my babies, as did their dad. Time on our own. Thankfully when we were transferred back to our local hospital they didn’t allow visitors so it was taken out of our hands. It was bliss. It might sound selfish, but I don’t care! Unless you’ve been through the trauma of a premature birth and the experience of watching your children fight for their every breath, you can’t possibly begin to understand how precious that time together is.

It’s ok to cry

I cried every day.

I cried as I walked into theatre.

I cried as I felt the cold spray on my back before my spinal was administered.

I cried every day from the moment our children were born until they day we were finally able to bring them home.

I cried for a reason and yet other times I cried because I had no reason, except that t I just felt like crying.

It’s ok to cry. Dads too!

You don’t have to be strong

Every day I longed to be able to bring our children home. It felt like it was never going to happen, but it did eventually and it was the second best day of my life. The first being the day they were born!

You don’t have to put on a brave face. You don’t have to be strong.

Just do your best. Your best to spend as much time as you can with your premature children, but also to look after one another.

As Winnie the Pooh once said, “Sometimes, the smallest things in life, take up the most room in our hearts”

 

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