When we brought Esther and William home from their 59 days in special care we were terrified.

These teeny tiny babies were now entirely our responsibility.

What on earth were we to do?

Neither of them weighed over 5lbs. They could be held with just one hand.

How were we to know that they were okay without the machines that monitored their heart rate and their oxygen levels?

The quiet took a lot of getting used to. The quiet of our surroundings and in contrast the noisiness of our tiny son and daughter. Prem babies make so much noise when they breathe!

For days we did not leave the sanctuary of our bedroom. Here it was warm and safe. Here we had everything we might possibly need. And what we didn’t have Daddy went out to get. Daddy was good to us in those early home days.

After surviving our first night alone as a family of four, outside of the hospital walls. We thought things would begin to get easier. In fact it was then that real parenting began.

I knew I was a real mummy, prem or otherwise, when I started worrying about colour and consistency and frequency of poo! Seemingly that is something that all mummies do.

Our Health Visitor was quick to reassure me that my poo concerns were normal and that the twins seemed to be feeding really well.

We were doing well. At home! We were doing well on our own.

And on our own we were.

There were no visitors to our house in those early days. And we did not go out to see others. We did try to get of the house for a walk once a day but we did our best to not see any people.

Not because we were being precious about our premature babies but because we had been warned of the dangers of the dreaded RSV. And the cold and flu season had only just begun.

RSV affects a large proportion of all babies. Around two-thirds get RSV before they are one year old. If your baby was born prematurely, is prone to getting lung infections or was born with a congenital heart problem, they could be at greater risk of being made more seriously ill were they to become infected with RSV. A baby who was dependent on additional oxygen for several months, like Esther and William were, is at particular risk.

We had a long cold winter to get through and we were determined to do so without any readmissions to hospital.

I am sure that some friends and family members did not understand and felt that we were being totally over protective. But I know in those first weeks and months out of hospital we found out who our true friends were.

The people who made an effort to stay in touch with us though we were not always able to make contact with them. The people that knew to visit they had to scrub their hands and change their clothes and probably even then not be allowed to hold our little babies.

We could not be too careful with the precious lives we had been given.

We were their protectors now.

And we did everything in our power to keep them safe.

One of the first things we had to do was send an email to our family and friends to explain our decision to go into hibernation that first winter rather than sharing our bundles of joy with the world.

This is the email that I wrote. I would love to know how you would have felt if someone sent it to you???

That first winter was wonderful in so many ways as our babies continued to grow and go from strength to strength.

It was also incredibly lonely. I did not really see anyone and the motherhood I had dreamed of for so long was not mine. There were no baby classes, no NCT groups, no new baby friends, no play dates. I feel that I really missed out though I know it was the best thing to do for our children I am not entirely certain that it was the best thing to do for me.

Thankfully my wonderful husband worked from home and so I was not entirely alone in the days.

And do you know what? The winter was long. We only saw friends and family when they were entirely well and if we were in any doubt at all we would meet them somewhere outside.

But we did it. We made it to the spring with no colds, no flu, no sickness and most importantly no RSV.

We did it!

And as the buds turned to leaves and the blossom began so too did Esther and William’s social lives, and mine too. We opened our doors to the world. And it was wonderful!

Knowing that they and we were strong enough to get out and face our future as a family of four.

We had beaten our first winter and were ready to enjoy the spring!

21st September 2010.

59 days after they were born.

Esther and William came home.

Home – Making Up for Lost Time and Missed Cuddles

The few hours that we had not been at the hospital with our newborns we had been busy preparing their home.

The room that would house all four of us for the forseeable future.

The nursery.

Making Ourselves at Home

They were still so very tiny.

Tiny Twins

They made everything at home look huge.

Giant Baby Rockers

It felt like we had over prepared.

The nursery had a jungle theme just as our playroom does now.

Daddy had created all the artwork.

Daddy’s Art Work

The window was sealed and insulated to keep the room warm and quiet and dark. The window was covered with a jungle mural that Esther and William used to stare at for hours while we watched the clock. They should have been asleep!

Babies loved the mural

Mummy watched the clock

We had a cosleeper for the babies to sleep in when they were not in our arms.

Cosleeper

A changing cot, just like we had in hospital. Though special care habits die hard.

Changing Cot

I tried to stick to the NICU routine at home, changing nappies every three hours round the clock. Washing all body parts before putting babies in the bath. Only now can I see how silly this was. But then I did not know what else to do.

There were lots of cuddles those first few days. Making up for all the time we had lost.

Feeding Cuddles!

This room was our safety blanket, a secure environment that we could control.

Where we kept all our medicines and guide books, planned our days and adapted our routines.

Where we got to know each other and found our way as a family.

This was our sanctuary. A place we could finally be together and alone as a family of four.

No beeping, no buzzers, no whirring machines.

No footsteps.

No questions.

No probing and prodding and painful procedures.

Things were starting to normalise.

At least that is what we thought.

But of course our lives were not normal. I am not sure they ever will be again.

Follow the blog over the next few days as I share with you our experiences of bringing our premature babies home.

Forming A Family

Esther and William, born at 27 weeks, stayed in hospital for 59 days.

Everyday I would go to them in the hospital and do all I could to be a part of their life in those earliest days.

Each step toward the door meant that I could be more involved in their care but to begin with their was very little that I could do.

It was a steep learning curve, practically and emotionally.

I felt like it was an immediate, premature yet delayed start to motherhood.

It is so very hard to explain.

One thing I can do though is try to explain how I spent my days, my long long days in NICU.

When Esther and William were born I could not drive and so David had to drive me to and from the hospital. It meant that most days once I got there I was there for the duration and on my own whilst David worked. He planned to work as much and as hard as he could so that he could be ready to look after the babies once they came home. As well as running his business he also had a twin nursery to prepare. Our babies were not expected for at least another three months!

Every morning we drove to the hospital and tried to arrive by 8 o’clock. The nurses would wait for us each morning to carry out the babies’ cares. David would often stay and help, it was precious contact with our little people but sometimes he had to leave for work.

The cares routine was carried out twice a day. I changed tiny nappies, washed tiny bodies, oiled fragile skin and cleaned and moistened dry mouths. It was precious time with my babies. To begin with I was often watched closely by a nurse but as time went on it became our time. A time to examine tiny toes and feel tiny fingers. It was all part of bonding and falling in love.

Cleaning William’s Mouth

William Having Mouth Care

Learning to Care For William

Changing Nappies

Proud and Gentle Daddy

Washing and Drying William

Washing Willliam

Most of most days were spent sat on a tall stool looking through the misty steam of the incubator to my tiny babies.

I tried to move between the two of them regularly. Trying to ensure I had some awake time with each of them each day. It was hard to tell with William at the beginning as his eyes were tight shut. The days were spent watching and waiting. Waiting to be told that we could do this!

First Cuddle with Esther

Out of the Box

Daddy’s First Cuddle with Esther

Between 8.30am and 9 the doctors would do their rounds. At this time we would be asked to leave while the doctors talked with other parents about their child. Their was a kitchen where we could go to make a cup of tea and a room where we could sit and wait. I often used this time to express milk as that way I would not have to leave Esther and William alone again for at least another three hours.

Often during this time if David were still around he would go to work and I would walk out with him to the hospital shop where I would most days buy a can of coke and some chocolate raisins. It became an important part of my routine this little ritual.

When the doctors spoke to me it was often to say no change, or to advise how many days one baby or the other had left til they needed a blood transfusion or if their milk amount was to go up, or down. We were lucky in that nothing too serious happened to our beautiful son and daughter. They were strong and they were growing. They needed help with their breathing and needed light therapy for jaundice but on the whole we and they were very lucky. Most days from the doctor we were told no change and to carry on doing what we were doing.

From 10am the day was often mine. I would sit first with one baby and then the other reading to them and singing to them. They had picture books that I bought for them when they were born and on their one month birthday. I read them Milly Molly Mandy stories and Just William too. I told them about their family and we planned what we would do when at last they were home. I read rhymes and poems and I sang them songs. Esther’s song was There Was A Princess Long Ago and William’s was The Grand Old Duke Of York. I also used to sing Thumbelina and lots of school hymns. I wanted them to know my voice but also the constant communication helped me. It soothed me. It made me feel connected to them. My babies.

Every three hours I had to express milk. I would stretch the three hours sometimes until it became so painful that I had to go. I hated leaving. I used to hate the thought of something happening while I was gone.

Beautiful Esther

Handsome William

Between the reading and the singing and talking to the wonderful staff came the thinking. The what ifs, the maybes, the whys. Intertwined with the thinking was the worrying and the wondering and the the guilt. Always the guilt, of what had I done to cause my children to be lying here when they should be safe and warm inside.

David would come again in the evening. Most days we would leave at 8. When they were tiny there was little we could do after their final cares. We were aware that I needed looking after too. I was recovering from major abdominal surgery as well as recovering from the birth and dealing with the emotions of prematurity.

Home was for sleep and food and expressing milk. I had not started blogging then. I was in no state to read. My sleep was troubled, disturbed. I longed to be back at the incubator side. Back with my babies.

The sounds of the NICU never go away. The beeping, the buzzing, the alarms. Even in the still of the night at home the bells would be ringing in my head.

I dreamed of a day when I could bring our babies home.

Every morning as we drove to the hospital, listening to The Killers, we would be wondering what we might find there that day. The walk through the hospital corridors seemed so very long. I think I held my breath most mornings until I saw that my babies were still breathing theirs.

A day in the life of a NICU Mum is a long and emotional one but each day of that time I witnessed a miracle. The miracle of life beginning. And two of those lives were mine.