Ethan's Story

The journey began in January 2012 when my son was unexpectedly born prematurely at 26+2 weeks. Like many NICU parents we suddenly found ourselves in a world far different from what we had imagined life with our newborn would be. Instead of bringing Ethan home the days and weeks were filled with oxygen stats, cares, tube feeds and counting every gram in weight he managed to gain. At birth Ethan weighed 900 grams (2 lbs) and measured 34cm long. He was ventilated for just 1 day and 14 hours, then put onto CPAP to see how he would cope and never looked back. Despite being so early Ethan was incredibly lucky that he never had any major health problems - for the most part he just needed to grow. He had one session of phototherapy for jaundice, and as extremely premature babies aren't yet capable of making red blood cells he needed four blood transfusions, the last one being at 5 1/2 weeks old, just before the 6 week immunisations. It was quite surreal that he was ready for his first immunisation despite it still being 8 weeks before his due date.

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At 8 weeks old he was finally off CPAP and put onto high flow instead, another big step forward. It was great not having the bulky CPAP tubing anymore and I'm sure he hated the large nasal prongs that went with it. The high flow also helped reduce his CPAP belly which was good to see. Slowly he graduated through the stages - had a nasal gastric tube instead of an oral one, transferred to a SCBU unit closer to home, moved onto low flow oxygen, and one at a time the monitoring decreased. I found it very difficult when he was taken off all the monitors, you get used to relying on them so much and keeping a close eye out whenever an alarm sounds. For weeks afterwards I would check on him constantly just to make sure he was still breathing!

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Ethan came home in mid April, two weeks before his due date and weighing 3065g - 6lbs 12oz. He was on low flow oxygen for the first few months but since then he has been checked and discharged by oncology, audiology and his paediatrician. Ethan is still very little for his age but we are lucky to now have a happy, healthy and very active four and a half year old.

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When Ethan reached 2047grams (4lbs, 8oz) at 6 1/2 weeks old he was able to be moved into a cot, a huge milestone and a day I'll never forget. For me the chance to put our little baby in some clothes made the whole experience of having him in NICU a bit better, he was a step closer to coming home and being more like a "proper" newborn. The nurse found me four layers of clothing to dress him in to make sure he was warm enough and they were huge on him. He was a big ball of clothes with his little arms and legs sticking out the ends, it was a bit funny to us but he didn't look very impressed! Most of the clothes available in the NICU were newborn sized so from then on I would sort through the box of available clothes to find the littlest of the items. The over-sized clothing hid the monitor leads but emphasised how tiny our little baby still was, and I quickly realised that finding outfits in his size was going to be a challenge.

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I was welcome to bring in clothes for him to wear and they would be kept aside for me to take home and wash, so my mum started to search for some more suitable clothing. In between expressing every 3 hours, spending as much of the day as possible in the NICU, travelling to and from the hospital and finding the time to eat and shower, there wasn't much of my day left for trawling the shops, and to be honest it was the last thing I felt like doing when my baby was in a hospital instead of with me! My mum spent a lot of time looking for premature sized clothes, she was told to try dolls clothing or even items from a range of teddy bears clothes. Trying to find clothing that was front opening (so the CPAP and leads for his monitors weren't disturbed too much) narrowed down the choices even further. There was only one New Zealand store that sold specialty NICU clothing, however the pricing was beyond what we could afford.

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Most parents-to-be start to buy and organise what they require for a newborn a bit in advance, but with a premature baby all your plans disappear. Nothing can really prepare you for a baby which turns up so much earlier than expected! Ethan was still wearing Prem sized clothes for over a month after arriving home, and as he was on oxygen it was far easier to put him in clothes that opened down the front. The stories I’ve heard from other parents who have resorted to buying dolls clothes made me realise that there should be a better option available.

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I thought it would be great if there was a place where new parents can look in their own time to easily find a range of reasonably priced clothes for their little baby, or where proud Grandparents, Aunties and Uncles could get a special gift to celebrate the birth of a premature baby. After two years and countless late nights researching and planning, Small Babies was formed. I hope that you find something here for your baby (or babies!) and wish you all the best for your journey together.

Stephanie

                                                                                        


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