Team Boet
This is a call out to Team Boet!
Whilst everyone is starting to look forward to the silly season and a decent break, the upcoming months will be challenging for us to say the least. Not only because Boet isn’t with us any longer physically but also because Boet would have turned 1 on December 21. How crazy is that! So, the four of us started brainstorming how to get through the upcoming months channelling our thoughts and actions into a positive direction.
For those of you who don't know our story, our baby boy Boet was born on 21 December 2018 at 27+3 weeks at the Royal Womens Hospital. From about 24 weeks, we knew he was growth restricted (IUGR) and Marijn was admitted in hospital for twice-daily CTG monitoring. On the day he was born, Boet showed dips in his heart rate and the doctors decided it was his time to come out. Boet's birth weight was 689 grams and he was 30 cm tall. The first weeks, the team at the Womens struggled with Boet's very underdeveloped lungs and on Australia day we almost lost him. The day after Boet was transferred to the Royals Childrens Hospital for treatment on the Jet ventilator, a special ventilator that is particularly gentle for underdeveloped lungs. Boet responded well, was extubated to CPAP after 12 days and in March he was transferred back to the Womens for a bit more development and growth. In May, he was ready to come home, needing only some low-flow oxygen for support. We stayed at the hospital for rooming-in, to practice caring for our son on our own. But, during that night, he got sick and had trouble breathing. Initially, it was thought he had "just a cold", but after two weeks he deteriorated quickly, needed to be put back on a ventilator and was rushed to the Royal Childrens Hospital once more. Boet needed Jet ventilator support for about two months, a period in which he was very up-and-down and had many close-calls. Finally, in July he was able to come off the ventilator and breath on his own again (supported through CPAP). In the weeks following, he slowly progressed, needing less CPAP pressure and transitioning to high-flow oxygen support. But, end of August he got sick again. Boet developed a high fever and during the early hours of 1 September, with his mommy and sisters away at home and his dad two doors down, laying down for a rest, his heart stopped beating and he passed away.
We have learnt a lot from 9 months hospital and 8,5 months NICU and what has stayed with us throughout is the horrible feeling as parents and family to not be able to be with your child all the time and so when you hear that your baby is unsettled or had an unsettled night or day, it breaks your heart every time. Boet was very strong-willed and determined but was therefore also so difficult to settle with anyone other than us. So quickly it was needed to find things that would help him settle and apart from baths, bottles and cuddles, Boet really liked to be swaddled, listening to some music and he loved his big Zaky hand lying across him. Our goal is to go out shopping and buy these items for babies in the RWH (Royal Womens Hospital) and RCH (Royal Childrens Hospital) hoping that a few babies will be more settled, grow well and get better and therefore supporting their parents and families. We would like to buy as many colourful wraps and blankets, (white) noise machines and Zaky hands as possible.
There are 2 activities we would like to undertake to raise the funds.
Firstly, the four of us will walk/run 5km in the Point Cook park run on December 14. Team Boet is always looking for new members, please let us know if you want to join. We promised Caat to go all out so yes, we will organise team Boet t-shirts .
Secondly, we would like to start baking and selling some yummy Dutch cookies, pepernoten. In The Netherlands you will eat pepernoten mostly during the months of November and December on top of that they are delish and so it’s perfectly suited. 1 bag will be $5. Who wants a bag or 2? We get baking soon !
Needless to say, all funds will be going to the NICUs of both hospitals, Boet’s home and therefore so close to our hearts. Please support this great cause and help us get through the next couple of months! Any donation big or small, words of encouragement or participation in the walk/run is greatly appreciated!
My darling Boet, we love you to the moon and back, we miss you like nothing else and as promised we will celebrate you!