Parent-to-Parent NICU Stories – Interview

This is a link to an interview by Shante Nixon, where I talked Live on Air about my experience with Baby Noah when he was in NICU (Neonatal ICU). Shante is an advocate for helping parents prepare for their own NICU experience and she contacted me recently to ask if I could share my story. Noah spent the first 217 days of his life in hospital – 3 months each in neonatal and paediatric ICU and a month in general ward. This was the first time I brought up some of the backstory to our journey. Some of it is controversial and some, I hope, helpful.

If you can ignore the 283 “you-know”s I muttered, this was my most revealing interview ever; if you want to skip ahead, I’ve added the Timeline at the bottom of the video.

Timeline –

1:44 – Down Syndrome
3:02 – why I share about Noah
6:32 – hydrops
8:00 – emergency caesarean
8:33 – “people who need people”
28:00 – Google Australia calls
30:00 – “we can’t fix Down Syndrome”
31:20 – motivation
34:40 – “rowdy Arabs”
40:00 – death
45:40 – advice to other parent-entrepreneurs
50:55 – parent-to-parent advice
52:45 – gloating

Overnight at the hospital for what I thought was just precautionary observation. I ended up being wheeled in for emergency caesarean the next day.

First pic of Noah several hours after he was born and wheeled off to NICU. Pic taken by my daughter to show me what he looked like as I was still in the maternity ward in the hospital next door.

Noah immediately after bowel surgery that we thought had gone well. I was called in later that night to be told he was dying.

Card made by nurses at NICU who also cleaned him up and removed all tapes and tubes just to take the photo of his 100 days “birthday”.

Page from diary created and filled in by nurses at NICU for Noah.

Mobile made by NICU nurse in background for Noah.

Guest chef at Google HQ, Sydney, Oct 2012

Taken 3 weeks to the day Noah was born; very obviously pregnant but somehow my bump was missed by most psychics I consulted re: my pregnancy.

Pop-Up event to celebrate “Jackie M’s Return” same day Noah had to go in for emergency heart surgery. Photo courtesy of Patrick Sirisonthi.

Cooking Masterclass series at Grace Hotel, Sydney Nov-Dec 2012. Photo courtesy of James Burgin and Ken Burgin.

Hyde Park Night Noodle Markets Oct 2012. Photo courtesy of Ken Burgin and James Burgin.

Baby Noah leaves hospital after 7 months, one week before Christmas 2012. Photo courtesy of Ian Chow and Cindy Choong.

Baby Noah’s Journey

Several weeks ago, in my first group meeting held with all the different medical teams at Westmead Children’s Hospital, I floated the idea of having Noah home by Christmas, notwithstanding any deterioration in his condition.

I’m grateful for the doctors and nurses who worked together to that aim, and on 17 December, baby Noah was finally discharged after spending the first 7+ months of his life at Westmead Children’s Hospital.

I’ve attached 2 videos here, one of which is a slideshow of photos taken since Noah’s birth, and the second, shot and compiled by Ian Chow.

No amount of words or images could do justice to the gratitude I feel for the staff at Westmead and for the public support I’ve received especially via Twitter (many from people I may never meet in person).  I thank you all for keeping me going in the worst of times.

I’m loathe to single out people for praise but it’d be remiss of me not to mention Dr. Sandra Heck at Grace Ward who was instrumental, I believe, in saving Noah’s life in more than one instance.  Also nurse Rebecca (who couldn’t stop saying “oh my goodness” in the homecoming video) – Noah’s first diary entries were by her, and her care and attention towards him during his first 3 months were not unnoticed.  And of course, Cheryl, Noah’s Ward Granny, a volunteer who was a retired nurse herself, for spending Mondays and Tuesdays with him the last couple of months of his stay at Westmead.

Noah’s journey is by no means over; he has pulmonary hypertension and respiratory problems and has endless hospital appointments ahead of him.  For now, however, I am grateful to be able to end the year with this critical chapter of his life behind us.