To mark Word Prematurity Day we're really delighted to introduce Joi, a talented blogger and a mother of twins, based in New Zealand. In her personal blog, Joiful Jelly Beans, Joi writes about her life raising twins - her two Jelly Beans, Jaxon and Byron. She is also a proud Charlie Banana customer and a great example that cloth diapering can easily be done twinning!
Today Joi is sharing her personal story of NICU experience and her happiness when she finally got to hold her babies together a month after giving birth:
“We found something with his heart”, the doctor didn’t look up from her notes. “Okay”, I said, already lifting my bag up from the ground, ready to leave, “so we will just monitor that? Have another scan next week?”
“No”, and this time she looked right at me, “no, you don’t understand. You are having these babies within the next two days. They need to come out”.
“But they are only 28 weeks” , I said confused.
The doctor just nodded.
I grabbed my fiancé’s hand, unable to speak.
He broke a half-smile and said: “But we are getting married next week?!”
“No”, the doctors said again, “no. You are having babies”.
And so our journey began.
Little did we know that we were going to spend over 3 months in hospital and little did we know that we would almost get married but that we would receive a phone call instead telling us that our son was likely to die within the next hour. Little did we know how strenuous our NICU journey would be and for every step forward how many steps back we would take. But we also had no idea how incredible it felt to be parents and how precious every single moment with our tiny little babies would be and how my heart would just burst when I finally would get to hold my babies together, over one month after giving birth.
Being pregnant with identical twins, you are automatically classed as a high-risk pregnancy. From our very first visit, our midwife prepared us for possibilities such a Twin-To-Twin-Transfusion Syndrom (TTTS) and that the babies might be born prematurely. I remember she kept telling us to have everything ready at home from 24 weeks on…just in case. And sure enough right from our second scan on at 12 weeks, one of our babies looked smaller which meant we were referred to our local hospital for fortnightly scans as well as to the Fetal Med Team at the City Hospital for more check-ups and to look out for TTTS signs. But although one twin was on the smaller side at every scan, no TTTS signs were detected, so the doctors diagnosed him with selective growth restriction – something that also happens in singleton pregnancies.
The weeks went by and as with most things in life, we just got used to everything - the scans, the driving and the fear about their survival. But mainly we were so grateful that anatomically they both looked healthy and happy and thus prepared ourselves mentally to meet our little babies at the beginning of December. And of course we were also hoping that they would be big enough to forgo NICU (Newborn Intensive Care Unit)/ SCBU (Special Care Baby Unit).
And then the next scan rolled around…Exactly one week before we were meant to get married. Given that I would be 29 weeks pregnant, we had only planned a little ceremony, but because this was the only time at which my parents-in-law were able to make it (they were flying in from Germany), we had planned it for this “late” in the pregnancy. But all of the sudden our world flipped upside down. Yes, Baby B was still a bit smaller, but not too concerning. But now, out of the blue, Baby A had developed a heart-condition so severely that the only way to save him and potentially his brother, was to schedule a C-Section straight away. 2 days later, on the 7th of October 2016, Jaxon and Byron were born; weighing in at 1360g and 1050g. Byron had to be reanimated after birth and before I even got to take a glimpse at them, they were wheeled off right to NICU.
NICU might be the only place where life and death, hope and desperation lie so close together. A peaceful, highly organised and sterile world, only interrupted by the beeping of the monitors. And yet it is also a delicate world, where doctors tip-toe around heart-broken parents, where there is a certain tension in the air and worry behind every door. Our first week in NICU was the longest week of my life and yet in many regards, it was also a blur. While still recovering from my C-Section, I had to come to terms with the fact that we might not get married, that I was all of the sudden on maternity leave and not going back to work, and of course, the fact that we were parents now and had a very sick child, which we were told was likely not to make it through the first 24 hours.
But he did make it through and 5 days later, when things were looking up, we decided to go ahead with our little ceremony. However, as we should have learned the first time, fate had different plans for us and as so often with premature babies, Jaxon’s condition deteriorated unexpectedly over night, which had us rushing into hospital in the early morning hours of our wedding day. Instead of exchanging our vowels, we witnessed our son being resuscitated right in front of our eyes. And instead of spending our wedding night at Sky City, we stayed in the parents’ room in NICU and ended up sharing our wedding cake with the doctors and nurses who had saved our little baby. In fact, we didn’t even go back home until days later, when Jaxon had finally improved.
Over the weeks, we learned a little bit more about how to handle our babies, which medications where doing what, how to touch their delicate skin and how to change nappies through the incubator doors. We celebrated every little milestone, such as the first milliliter of milk they got, and of course, after nearly a week the very first cangaroo cuddle. But we also cried about every setback, such as the blood transfusions, having to go back onto CPAP and mostly, seeing them in pain.
NICU is a tough road- no matter how long or short a baby has to stay. And unfortunately often the journey of a premature baby continues even after being discharged from the hospital. In our case, we ended up having Jaxon home after 9 weeks, as ironically enough, after his initial scare, he did a lot better than his brother, who went on to Special Care Baby Unit and then to a Children’s hospital and has only now, 8 months later, finally managed to come off oxygen – after we have been home for over 4 months. But as tough as it is for parents and babies, the support and love we have received during our time in NICU, was something I have never experienced before. Not only did our families come together to support us in any way they could, but we received endless prayers, messages and outpourings of love from people we hardly knew. The sense of community and help we have been offered is definitely a positive in amongst many negative memories.
Today, I am so glad to have my two little fighters right by my side and even though raising (premature) twins is a demanding job with lots of crying and often very little sleep, I am so grateful every single day, that we are the lucky ones that got to take home our babies from the hospital. It often blows my mind that these tiny humans, which weren’t even meant to be born for at least another 10-12 weeks, and that fit right into the palm of my hand, are now my bubbly and chubby little munchkins, which are almost getting too heavy to carry together. Although it was a tough time, luckily NICU is only a small part of our lives and I hope that eventually the baby smiles and morning cuddles in our own bed, will start to outweigh all the pain we had to go through to get here.
Joi, from Joiful Jelly Beans
To read and watch more about our story, as well as preemie- and twin– related content, visit our blog at Joiful Jelly Beans or head over to our YouTube Channel or Instagram Page (@joifuljellybeans) –we will see you there for daily updates. Also check out my blog story about How to start Cloth Diapering!