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Celebrate every little moment – Cheri Roberts

In honour of #prematurity awareness month I am honoured to share my story of my two little miracles – Ethan and Emily.

My husband Brad and I really struggled to have children. I have severe stage 4 #endometriosis. After 3 surgeries I was told my hopes of a natural pregnancy were very slim. We finally opted to try #IVF. We were extremely fortunate as our first round worked, and we found out both embryos had stuck and we were going to have twins! We were over the moon.

At our 12 week scan we found out we were having a boy and a girl! Both looked perfect and healthy. I was having an extremely easy pregnancy, zero morning sickness, no heartburn or discomfort. As my belly grew bigger I did start to get aches and pains. I brushed it off as “normal” pregnancy pains and didn’t give it a lot of thought. My gynae was not concerned and all seemed well.

With twins you always know there is a possibility of a premature labour and delivery. I truly did not think this would happen to me. I naively thought I would make 38 weeks. However, just one day into my third trimester (28 weeks) we went shopping for car seats. I was in discomfort for most of the day but thought I was just overdoing things. My pain got worse and on Sunday 24 July at 3am in the morning I woke up with strange stomach pain. It didn’t remotely feel like what I ever imagined contractions to feel like, but what concerned me was that the pain would come and go regularly. I woke my husband up and we went to the hospital. We were told I was already 3cm dilated. They tried to give me something to stop contractions but it didn’t stop it. My doctor was telling me he could now feel a foot and that the best thing to do was to take them out. I was terrified! It was 12 weeks too early! My epidural failed and I was put under general anaesthetic, so I couldn’t even witness the twins being born.

When I woke up I immediately asked if the babies had survived. I was told they were both stable and in NICU. My son weighed just 1.1kgs and my daughter 1.2kgs. After what felt like forever I was finally wheeled to NICU to see them. I don’t think you can ever prepare yourself for a moment like that. Two tiny tiny babies lying in an enclosed incubator connected to so many wires and machines. It was overwhelming, naturally I just burst into tears. The NICU staff at Netcare St Annes hospital were simply AMAZING! They just hugged me. That night our paediatrician came to see us. He told us the next 72 hours would be critical and IF they survived it would be a long NICU road ahead. He explained some problems we could expect to face, brain bleeds, infections, ROP… it all was just a blur in my mind. I just kept thinking how could this be? We fought so so hard to have these babies and now they might be taken away from us? Everything seemed surreal. That night we finally decided on names for the twins. Ethan for our son (Ethan means strong), and Emily for our daughter (Emily means thriving). We hoped giving them strong names would help them.

I immediately made it my mission to educate myself on as much as I could about prem babies. I needed to be prepared. I heard many sad stories and many postive ones, I also found some great preemie moms groups. However we were still terrified, prem babies are extremely prone to any infections and NICU is typically described as “a rollercoaster”. You soon realise you have to be strong for your babies. They need you. I made sure I was pumping milk as regularly as I could for them – after all this was the only bit of mothering I could do? I was finally able to hold Ethan on day 2. It was AMAZING! 2 days later Emily came off the ventilator and I was able to hold her too! Kangaroo time and cuddles were the best! On day 3 the twins had a brain scan. We were told they both had a grade 1 brain bleed. I panicked. We were told to wait and see if the bleed would resolve on its own.

My discharge day was awful. Leaving my babies behind was the hardest thing I have ever had to do. I watched mothers being wheeled out of hospital with their babies and I felt so empty. I was a mom but without my babies. It’s just not natural.

I was amazed at how quickly we settled into an NICU routine. Every morning I would go to the hospital to be with the babies. I would leave after lunch and then Brad and I would return back around 4pm and stay until we could barely keep our eyes open that night. The hours spent staring at them in closed incubators seemed to go on forever. However, they were making some good progress, both had weaned off sipap, onto cpap and then eventually onto oxygen. All their follow up brain scans were now clear, showing zero bleeding. They were gaining weight too! Believe me in NICU you learn to celebrate every gram! Monday, Wednesday and Fridays were always “weigh-in day” and the first question you always asked on those days was “how much do they weigh today?”

Special mention again needs to be made of the NICU nurses. Absolute earth angels. So kind, so helpful. They became a second family and second Mom’s to me! Always reassuring and always went over and above their call of duties. I’m still in touch with most of them today and still continue to even ask their advice.

Things for the most part in NICU were going slowly but smoothly. Until we finally got a taste of the rollercoaster. One morning I arrived at the hospital to do my usual routine. Kangaroo’d the babies and at lunch time (12pm) I left. At 2pm the head NICU nurse called me. She said Ethan had taken a bad turn. He was so pale, desatting regularly and they were going to give him a blood transfusion. He had gone from breathing on his own to being back on sipap. We were told he had an infection of some kind but had to wait for the cultures to come back to see what it was. They tested Emily as well. That night we didn’t leave the hospital, I couldn’t leave them. A few days later the culture came back and it was positive for Group B strep. Group B strep could have killed him. Emily came back positive for it too. But thanks to the Paed and nurses quick response they were both showing signs of improvement.

NICU is strange. Time goes by so slowly and fast all at once. One day we were there when a baby passed away, I’ll never forget the sound of the mother screaming and falling to the floor. I cried for hours.

Before we knew it little hints of “hometime” were being tossed around! Finally we got told, it’s time! I lodged in at the hospital for 3 nights with the babies before taking them home. Finally on day 60, the babies were discharged. What a bittersweet moment. It was quite emotional to say goodbye to our NICU family and the responsibility of 2 small babies was all ours! The babies were just over 2kgs each as we wheeled them out of NICU and took the slowest drive home.

Life with “newborn” twins ain’t easy! Especially prem twins who need to keep their weight gain stable! We had to become “germaphobies” and limit visitors. We had bottles of hand sanitiser all over the house. We were also not allowed to take them out (except doctors appointments) for 3 months. It’s quite terrifying knowing how vulnerable they are. Slowly we watched them get bigger and stronger and start forming little personalities. And oh that first smile and laugh takes your breath away!

Fast forward to present. The twins are now 15 months old (12 months adjusted age). They are in amazing health. They have in fact only been sick 3 times each. They are rather small in comparison to other babies their age, but their paediatrician is happy with their weight. Ethan is always busy. He just never stops and is close to walking. Emily is having a few gross motor delays and dealing with some increased muscle tone in her legs. She is in weekly OT and physio therapy and is making great progress, she can talk up a storm and has a real little attitude! They are the happiest most content little people I have ever met! They love everyone, seldom get upset and they just light up everyone’s lives! I cannot believe just how blessed we are to have them!

They are true miracles in every sense who have fought every step of the way to be here. Being a preemie parent has taught us so so much about life! Don’t take ANYTHING for granted! Celebrate every little moment. Our children are our absolute heros and I’ve never been so proud of anything in my life!

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