Tag Archives: chronic lung disease

Sometimes I Forget….

This article was shared to me via FB private message on my fan page, and I feel it’s worth a reshare. I had the same experience when I took baby Noah to a GP awhile back.

Doctor (notices he’s different) : “What’s wrong with him?”

Me: “He has Down Syndrome”

Doctor: “You know there’s a test you could have taken?”

Me: “Yes”

Doctor: “Oh, so the test failed?”

Doctors. You’d think they’d know better.

Hand Me Downs

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Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is kind hearted but stubborn. He immediately runs to check on sister when she is having a dramatic, I’m four and the world is over, meltdown. He will climb onto your lap randomly and stretch his little fingers up to stroke your cheek, just to say I love you.

He also destroys things. Opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music, he will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle…

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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

Letter to My Baby 7 October 2012

Dear Baby Noah,

You’re nearly 5 months old now and you’ve yet to leave the hospital.  You came very close earlier this week, when they transferred you out of the ICU for the first time, to the general ward.  Mommy was told you could be home within weeks; days even.  Just like the last time when you had just had the pulmonary band put in your heart and they sat me down with notes on how to tube-feed you when you came home for a little while (which didn’t happen because you got sick again) until your full heart bypass, this time they gave me notes and instructions on the ventilation equipment that would be coming home with us.  I guess I won’t be needing those anytime soon either because you got very sick and they had to transfer you back to the ICU.

Mommy often gets asked how I do the things I do.  Some people think I’m strong to keep carrying on with the business; others probably think it’s tacky that I look like I have too much of a good time goofing around online and with my crew while you’re sick in hospital.

But you know mommy visits you every single day that I can and we cuddle for hours alone except for the handful of visitors you’ve had since you were born.  I joke that the bills aren’t going to pay themselves, but the truth is I don’t need to be running such a complex, expansive business.  I could sell up and I did consider that for awhile before you were born; then I could spend every waking hour with you without worrying about staffing issues here and placing grocery orders there and disputing incorrect charges and wrong deliveries and dealing with compliance requirements and marketing and promotional activities and the fifty million other things that come with being a business owner.

Even with what was known before you were born, nobody could guess how much more confronting your problems have been – Down’s, AVSD, duodenal atresia, hydrops, pulmonary artery banding, chronic lung disease, pulmonary hypertension, post-surgery leakage between the right atrium and left ventricle – your case is as complex as has confronted the doctors at the ICU, at a hospital that takes in the sickest babies in all of NSW and even overseas.

You’ve nearly died 3 times now, first when you were delivered and they had to resuscitate you, then two middle-of-the-night calls for me to come in, once right after your bowel surgery and another time when your hydrops that they thought had gone away, came back.  Then there was the time when your heart started failing sooner than they had expected, and because you were too little, they decided to put in a temporary band around the artery to buy you a little time.  Mommy had a pop-up restaurant event happening that night so I couldn’t be with you during the surgery.  I couldn’t cancel because they didn’t give me enough notice about it.  So in-between speeches and smiling for the cameras mommy was calling the hospital for updates on a surgery that I was told beforehand there was a 5% chance of you dying on the operating table, though the test would be how you held up post-surgery.

Then they thought you could come home for a couple of months before your big open heart surgery, so one of the supervising nurses sat me down and went through the whole feeding tube thing with me because you would need to be tube-fed for a long time.  And other stuff like getting my borrowed baby capsule fitted by a certified mechanic, and how I would need to stay overnight at the hospital with you alone in a room, and spend time taking you out in a pram in the hospital grounds to acclimate both of us to having you home.  I was dizzy with excitement that night.

But the next day I was told your heart had started failing again and the neonatologists wanted you to have your bypass right away because they figured you’re never going to get better and they might as well risk it, but the surgeons refused to do the operation because they didn’t want to play the role of ‘executioners’ and wanted to wait.  And I was told if they waited you might in fact get worse and they’d never be able to operate, and also that you might need to be hooked up to an ECMO machine during the surgery because of your chronic lung disease, which would cause permanent developmental damage especially for someone with Down Syndrome.

Mommy has been confronted with the possibility of you dying even before you were born.  Everywhere I turned it seemed people thought I was better off terminating the pregnancy.  I was told most Down Syndrome babies don’t make it to term anyway; it was “nature’s way” of dealing with defects.   And when you had your first life-saving surgery 2 weeks after birth, I was told everything had gone well, only to be called in and told you were at death’s door.

They were running blood tests on you every hour overnight and your condition was deteriorating despite everything they tried.  Then mommy showed up at 4am and for the first time, it seemed the reading was marginally better.  The supervising neonatologist was on the phone with the surgeon and as a last resort had wanted him to cut you open again to make sure nothing was missed earlier in the day, that wasn’t showing up in the X-Ray.  They decided to wait until the next hourly blood test before they wheeled you into theater and again, it showed a slight improvement, and it continued to improve after that.  Thank God they didn’t cut you open again because I think that would have killed you; you were 2.2kg and so incredibly fragile.

To treat your hydrops, they had been giving you steroids and were shunting fluid out of your body.  They stopped the steroids when you had your first surgery, and sealed off the shunt because it looked like all the fluids had been drained and you were okay.  Then your tummy kept getting bigger and I was told you were fine; the doctors had been keeping a close eye on it and there was nothing to worry about.

At 5 weeks old, Mommy even posted a picture of you on Twitter and people were making jokes about your big tummy.   That night, I got another phonecall to come in and was told you were dying; that the hydrops had in fact not gone away and the fluid gathering around your tummy was now infected.  They resumed the shunting and the steroids (which they weren’t sure had helped in the first place – there’s no known, fixed cure for hydrops) and I was called into the office by the night supervising neonatologist and was told that it wasn’t looking good; that in fact if you were to have recovered from hydrops, you would have done so within the first 30 days.

The day supervisor started her shift and she called me in for a meeting as well.  She was even more blunt – she said that hydrops plus Down’s is in fact not survivable and I should arrange for someone to be with me for when you die, especially if I wanted to capture the event on video as a keepsake.

I demanded she backed up her statement with statistics, but she wasn’t able to provide any because she said, most such pregnancies don’t make it to term.  They’d stopped feeding you because you weren’t tolerating it – I’d been expressing milk every day and labelling them diligently in the ward freezer, and they weren’t being used, and I couldn’t bear the thought of emptying out the bottles if you didn’t make it, so I stopped that day.  I had also, after 5 weeks, just sent off your birth registration forms the day before after waiting for your health to improve, and now faced the prospect of having your birth certificate arrive in the mail after I had buried you.  I think that was the first and only time I broke down at the hospital, really.

Then when I got home that night I googled hydrops + Down’s and found a case in a parenting forum where the baby did make it, so that renewed my resolve.  And I chose not to make arrangements for when you died, just like I chose to turn down the offer of the free professional photography session before your heart surgery where the nurses would specially remove all the tubes and tapes from your face beforehand so I would have photos of you as a ‘normal’ baby in case you didn’t make it out alive.

And I reiterated to the neonatologists that palliative care was off the table; I wanted them to throw the book at you where it came to saving your life.  They told me from their experience most parents get antsy at about the 6-8 week mark, when life starts to get in the way of the hospital and that’s when most lose their resolve to fight.  And that I might change my mind after watching you scream for the hundredth time as they pin you down to try and draw blood from you for tests (you don’t bleed easily), and I might then just want to hold you and let you die peacefully in my arms.  I said it wasn’t going to happen; I was in for the long haul.  That I get that my life would be so much “easier” without you; that if it was about convenience, I would have aborted you during the pregnancy.  So the next time I was “sat down” for a chat, the neonatologist took a different tack.

He said that in his opinion, after everything you’ve already been through, he doesn’t think you’ll ever be a productive human being; you will need round-the-clock care, and whilst he knew from watching me that I would be up to whatever I was confronted with, that I needed to consider what would happen to you after I’m gone; that you would be a ward of the state; that therefore I should give in and let you die, which you would, without the heart surgery.

That made me mad.  He’s basically saying that you will be a burden on society and therefore don’t deserve to live.  And that’s why mommy does what I do.  I run my business from your bedside; I take restaurant reservations, negotiate business deals, do conference calls via Skype and Google Hangout, hold meetings at the hospital cafeteria, do media interviews etc. while I’m cuddling you in my arms.  I’m building a little empire for you, baby Noah, so that you will one day be the envy of “normal” kids, not the liability that the doctors predict you will be.

Now with this latest setback mommy will have to wait a little longer before I can show you off to the world.  But it will happen, my little Hakka warrior.  Just you wait.