Tuesday, June 4, 2013

Adventures of a Tubie Mama part 1- How it all began NG-NJ

Tubie Tuesday

The moment I laid eyes on Kaylee, one of the first thoughts that went through my mind was "How on earth am I going to feed this little baby?"

And I've been thinking the same thing pretty much ever since!

I had breast fed all my other kids and experience had taught me that my smaller babies were often a bit slower to catch on to feeding.  The older kids had a birth weight of between 8 pound 9oz and 10 pound 1oz so when Kaylee was born at a tiddlly 5 pound 4oz and obvious signs of some kind of syndrome, I figured we were probably in for a few challenges.

The first few hours after her birth I had the privilege of being in a calm, familiar environment at our independent birth centre, attended by the midwife who had caught 5/6 of my babies and a secondary midwife who had been present at the births of at least two of my other babies.  Both of them are committed Christians and had sung worship songs with me during my labour.  It was a time of peace, tranquillity, prayer and trust.  I snuggled my tiny, beautiful girl into the bed beside me with my husband curled around behind me and carefully expressed colostrum into her mouth.  She lapped it up and looked happy, but did not try and feed.

Fast forward to the hospital.  We took her in to get checked out - me suspecting that she had  "some kind of syndrome" and naively thinking they'd tell me what she had and I would take her home, keep her warm, work out how to feed her and google it.  Then life hit fast forward.  She had her first de-sat ('blue' incident), we had a room full of medical personel, we had our first-of-many gentle conversations with a kind, no-nonsense paediatrician who was to become one of the most loved of our "medical minions".  We had the first introduction to the humidicrib which I hated then upgraded to the ICU baby warmer which I hated more.  And the tubes and wires started.  Within 36 hours she had been airlifted to Melbourne and looked like this:

Kaylee at 36 hours old, still intubated after her first private plane trip

Now I look at that pic and think "you know, there aren't THAT many tubes and wires really." but I suspect that is a result of spending too much time hanging out in ICU and on cardio ward.

This whole time I was working hard to express whatever milk I could for her.  Eventually, my milk came in and we managed to whittle the tubes and wires down to this:

That beautiful newborn still makes me melt!
And then this:

Kaylee is sporting the minimalist NG tube look
An NG tube is a tube which runs through the nose into the stomach.  I don't remember specifically the conversation around it being placed, although I am sure there was one, and I don't remember being especially shocked or disturbed by the concept of a feeding tube.  At the time I was so totally overwhelmed I don't think I had enough energy to be shocked or disturbed.

At the time her first feeding tube was placed Kaylee was having trouble remembering to breathe and her heart was malfunctioning so much of her blood wasn't getting oxygen.  Plus, as a part of her Cornelia de Lange syndrome she had low muscle tone which made it difficult for her to feed.  She also had a small cleft in her soft palate and generally tired quickly and had reflux.  If Kaylee had not had her tube placed she would have become severely dehydrated and the result would not have been good - most likely fatal.  So I thank that little tube for saving my daughter's life and for all the frustrations and heartbreak that go along with raising a tubie, this fact remains - a feeding tube is a piece of medical equipment without which my daughter would not be here.  The decision to place the tube was a no-brainer.

Kaylee made some attempts to feed orally over the next few weeks, but she tired easily and her condition was still unstable.  After six weeks, three hospitals, three air transfers, one 3 hour road transfer, and several de-saturations all culminating in her turning navy blue and being resuscitated by the Medical Emergency Team, Kaylee was rushed off for emergency open heart surgery where a cardiac shunt was placed.  Within a few days of her being out of ICU, we started trying to get her feeding regime to 3 hourly bolus feeds (that is a larger amount given all at once) rather than the continuous drip feeding she was getting.  Her heart started to have periods of rapid heart beat and it was determined that this was due to reflux so the decision was made to change her tube to an NJ tube.  This is a tube that, rather than going directly to the stomach, went through the stomach and into the intestine - specifically the part of the intestine called the jejunum.

Thus began our adventures with the NJ, the tube I hated the mostest.  (Stay tuned for part 2, coming up, probably on a Tuesday sometime in the future)

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