World Premmie Day
Today is World Premature Day - a day to recognise the impact of babies that are born preterm. We spoke to long term Rudie Nudie supporter, Grecian from @growing_our_tribe, about the birth of her twin girls Hanna and Riley, at 25 weeks gestation. Whilst the girls started their lives as Micro Prems, they are now almost 4 years old, and are big sisters to Grecian's fourth little girl.
Let’s start with your pregnancy. Twin pregnancies are usually highly monitored, when did doctors start to notice that the your pregnancy might not be progressing well?
We decided to go under the private obstetrician we went with for Adelyn (the twin's older sister) and started our routinely visits from 12 weeks. I thought, 'sweet, my body has done this before and it's pretty strong, so I'll be ok carrying two' - how things changed.
At our 16 week scan there was a difference in the babies sizes (we weren't 100 percent sure on the sex then), so the Doctor called King Edward Memorial Hospital (KEMH) and referred us there to be checked just in case. KEMH is the Women's and premature specialists in our area. In any pregnancy there are risks, but a twin pregnancy increases the risks, especially with MO/DI twins, which is what our girls were (identical twins that share a placenta). So off to KEMH we went, nervous wrecks, where we met with the gold team and the most amazing Obstetrician. She sat us down and was blunt with us that yes, there was a huge size difference and that both babies may not survive. We needed fortnightly monitoring and I was told to stop doing anything which could take blood away from my placenta, this included training. I left that day devastated and scared for the future.
What was the day of birth like and those initial days in hospital?
At 25 weeks gestation, Riley began to send all her blood to her brain and heart to keep herself alive. Her movements were reduced and it was time to decide what we were going to do. Hubby and I always said we wanted to give both girls a chance at survival and this is what we did. The Friday and Saturday before the girls were born I got the steroid injections to help their lungs, in case the following week was the week to deliver. The scan on that Tuesday I will never forget, Riley was very quiet that day and the Doctor monitored her for a good while then said, "Today's the day". In my gut I knew we wouldn’t make it any further. The 13th of February 2018 was the scariest day of my life. I was about to meet my girls who weren’t meant to be here for another 14 weeks.
At 25 weeks and 6 days I delivered the twins via c-section. After my scan I was left on permanent monitoring and set up on a drip of Magnesium to try and protect their brains. You could literally taste it and it made me so hot! I was wheeled upstairs and the anaesthetist popped in the epidural, with a mixture of epidural and a spinal block. I remember it taking what felt like ages to be numb, laying on the surgery table with about 30 people in the room. A team for me, a team for Hanna and a team for Riley. There was so much pulling and movements my body couldn't take it and I started to panic on the operating table. There I was, laying vulnerable on the table, having a panic attack. I didn't even want to see the babies after they were born as I just couldn’t comprehend what I was going through.
The best moment though was hearing both girls faintly cry / squeak. Hann was born at 930g and Riley a teeny tiny 515g. They were here and alive for now! Because I was in such a state of panic, I didn't want hubby to leave my side, as the girls were whisked off to Neonatal Intensive Care Unit (NICU) and I was sewn up. Those initial few days in hospital they call the honeymoon period, because usually the babies start off strong and put up a good fight. After this period it can all go down hill, and it did for Riley, being intubated on the highest form of breathing apparatus. Each day was a blessing to have them here and be able to express every 3 hours even over night for them.
How long were the girls in hospital for? What was the hardest part?
The girls' journey in NICU was long and full of 3 steps forward, 2 steps backwards. The NICU rollercoaster is like no other and unless you have been through it, you never really understand it fully. We both nearly lost them at many points along our journey and said our potential goodbyes more times than I ever wanted to.
Hanna was in hospital for 15 weeks and came home a week after her due date. Riley was in there a total of 5 months and came home on oxygen. The hardest part of the whole journey for me was taking Hanna home 5 and a bit weeks before Riley. Leaving Riley in NICU daily whilst being able to finally have that newborn stage with Hanna broke me. I hit a wall at 100 miles an hour and that’s when I was diagnosed with Post Traumatic Stress Disorder, Post Natal Depression and Post Natal Anxiety.
That's a lot to have on your plate! What happened when you received your diagnosis?
I was diagnosed by the psychologist at KEMH and put on medication, and almost 4 years on I'm still working through things with ongoing appointments.
During this time you already had another little girl at home, what was the juggling between home and hospital like?
The daily juggle was real.
Adelyn spent a lot of time with friends and family, whom we leant on during our hospital stay, as she wasn’t allowed in the NICU. We felt like we couldn’t give Adelyn the attention she needed so were very grateful for our support network. Between driving the hour each way to and from the hospital, the 3 hourly expressing, sitting with the twins on opposite sides of NICU, timing the visits so we could help change a nappy or feed one of the girls, plus trying to live a somewhat normal life, was very tough to manage. When you have a day away from the NICU you tend to feel a bit guilty, but those days were completely needed in order to not get burnt out.
What was harder? Being away from home in hospital, but with constant staff support, or finally being at home but not having the support? How was that transition?
Both hard in their own ways. Hospital is hard as you don’t feel like you are their mum or dad. You are relying on doctors, nurses, medication and machines to keep them alive and well. Going home you second guess everything because you don’t have that support network with you 24/7 like you have done the past 5 months. When it does become time to get home, you question the doctors decision and ask constantly are you sure they will be ok at home? I’m very lucky as Justin had lots of time off whilst they were in hospital and when they came home so the transition wasn’t too bad. Plus we had Hanna home for a bit before Riley so we somewhat eased into having twins at home.
Have the girls caught up to their peers in terms of milestones? What are the other longer term impacts of them being prem?
Almost 4 years on Hanna is on par with her peers developmentally but slightly behind physically strength wise. Riley is behind developmentally by about 6 months, and physically more like a 2 year old. Riley has recently been diagnosed with Epilepsy and we are awaiting diagnosis of Cerebral Palsy. Medically the appointments never end for Riley which some weeks can be tough, but she is an amazing little warrior and fighter I couldn’t be prouder of her. Riley's lungs are a huge issue for her as when she gets sick it affects her lungs quite a bit so steroids and Ventolin are needed and this year she has gone a whole winter without a hospital admission for a respiratory illness ! Each year as the girls grow they get stronger and stronger.
Any advice for other mums in the same position?
Lean on your support network where possible.
Trust your motherly instincts and protect your mental health as best as you can. The nicu ride is crazy and one thing I wish I did sooner was get help. I wish I saw my psychologist straight away, instead of hitting rock bottom first.
Ask all the questions and keep a journal to look back on and write in daily.
Be as involved as you can with your baby in hospital but don't feel like you must be there 24/7. You need to look after you too.
Reach out to anyone who has been in a similar position for help and advice. My inbox is always open xx
If you know someone who has recently given birth to a premature baby, and want to know how to best support them, we've linked to an article from Raising Children here. Or if you need support for yourself, you can get in touch with Life's Little Treasures - an organisation focused on supporting the parents of premature and sick babies.
You can also follow Hanna and Riley's journey on Instagram.