Photo of Maxwell Sluiter baby in NiCU

                   

What does 680 grams look and feel like? Pretty much like a bottle of soft drink that you'd have with your lunch………

On this occasion, that bottle of soft drink was called Maxwell- born February 4th, 2016, weighing 680g and measuring 30cm. Max would call the Neonatal Intensive Care Unit (NICU) at Westmead Hospital 'home' for the first months of his life.

So how did we get here... again?

Not that we are complaining but Maxwell's older sister Scarlett was also born premmie at 29 weeks- and also a graduate of Westmead's NICU department, faring slightly better at 1.1kg.

We weren't 'unlucky', nor was it unexpected that they would need to be delivered early. See, mum Amanda has a raft of health complications, the main ones being kidney failure, a heart concern and blood pressure issues. So we knew it would be complicated, but the teams at Westmead Hospital were amazing.

Our first born took 8 years, 3 surgeries, every natural remedy, acupuncture, unbelievable amounts of medications and med changes, infusions and 13 failed IVF attempts to come along- in the end naturally conceived.

Our second pregnancy, knowing it could potentially take another 8 years, took only a month after we decided to 'not actively prevent conceiving'. Murphy's Law at work but we were grateful for a second miracle.

The down side- Amanda went into kidney failure and needed dialysis (along with the surgeries to put in a fistula and stent). Not even dialysis could prolong the pregnancy and at 27 weeks and 4 hypertensive medications being put through a dialysis circuit to try and drop Amanda's BP, it exceeded 240/160 and we went to theatre in an emergency situation. Mum was so critical that the anaesthetic team couldn't safely bring her back from the GA that night and we were told she would need to be put in a coma until the next day when it would be safer to try bring her out of it- which they did successfully.

Little Max spent 13 weeks in NICU- majority of it on a machine to support his breathing as his immature lungs wouldn't work on their own. In the end he battled through and went home a massive 2.4kgs.

Westmead Hospital has become somewhat of a second home for us and we appreciate the excellent clinicians and care this facility provides.

Through both our pregnancies, around 20 different medical teams and departments needed to co-ordinate in order to keep both mum and bubs alive- and they dovetailed in seamlessly.

Our Obstetrician was amazing. Firstly for agreeing to take us on not only once but twice, knowing these were super high risk pregnancies. Her Dr’s resolve, especially in the delivery that turned tense and went from a caesarean to an 'extension' was inspiring. She never gave up on us, just supported our wishes for a family and came through in the clutch. We will forever be in debt to this incredible person.

Amanda's renal (kidney) physician, is one of the coolest, calm and collected Drs I've ever met. He had the pressure of the big decisions- do dialysis or not for example- and took a lot of 3am calls when Amanda had the alarms going off as her BP spiralled etc.  Thank you for your unbelievable composure and skills to make the right decisions.

A big thank you to the team in the dialysis unit- you kept Amanda alive and I know there were troubles at every turn with the lines constantly blocking and clotting up.

And that coordination I talked of earlier- that was driven heavily by the High risk pregnancy team. The high risk team were amazing and unbelievable in co-ordinating the teams, keeping everyone looped in with where Amanda was going- this ward, that unit, treatments, rosters for who would sit with Amanda and do the monitoring, "BP is high again Vincent- bring forward her next dose of this and that drug" etc, etc, etc. The team of midwives who patiently sat there with a monitor on Amanda's bump for 4 hours every day were to be admired. We really appreciate all that you did for us and couldn't have done it without you quarter-backing this whole hospital experience. You made us feel very safe and comfortable that all parties involved in the care knew what was going on at any point in time.

The team in NICU were fantastic. Round the clock care, happy to answer any questions we had and respected that we wanted to be involved in the treatment planning aspect of Scarlett and Maxwell's care. Too many nurses and Doctors to name that were brilliant during our time there- most of whom we would see again when we had our 2nd child. Words can't express how grateful we are for everything they have done for us and it was nice to be asked how mum and dad were doing, not just our baby.

Another great help was the assistance from the lactation consultants on the maternity unit and in NICU, who really assisted with all things feeding for newborns.

There were a raft of others we crossed in our journeys at Westmead Hospital that also need thanking- cardiologists, sonographers, endocrinologists, haematologists, intensivists, anaesthetists, vascular surgeons, ICU nurses, Maternity midwives, Birthing Unit midwives, Day Assessment Unit midwives, the Pain Management Team, High Dependency Unit nurses, Operating Theatre staff and the various support and admin staff.

So here we are, back home with our 2 little blessings, and forever thankful.

Alan, Amanda, Scarlett and Maxwell.

 

Family photo of Sluiter family