Wednesday, July 03, 2013

Tales from the NICU

[edit - draft post I didn't get around to finishing before the twerps were discharged]

Finally, a few moments to update my dusty, cobwebby corner of the interw3bs!  This whole NICU life is exhausting.  I would say it's probably more exhausting than having both babies and the Big Yam home.  Right now, I'm there 3 times a day and each time involves at least a minimum of 1.5-2 hours physically there and at least half an hour of transportation time and then the pre/post visit preparation - sterilizing bottles, packing the bag, labelling the breastmilk, trying to catch up on life, and spend quality time with the Big Yam.  It doesn't sound like much but it's more than an 8 hour day at the end of it, I'll tell you that much.

The wonder preemies loved the hypoallergenic formula and we started them on my dairy-free milk yesterday and so far they're responding well.  Minor spit ups that are within the range of normal.  I feel like last time they were on my milk for a few days before they started barfing up a storm, so I'm still being cautious with my optimism.  Yesterday was stressful - they started getting my milk at the 9am feed/visit and then I went and hung out with the Roomie until I went back for the 3pm feed/visit.  I wanted desperately to know if they spat up but I was also anxious about knowing the answer so even though I could have called the NICU to find out, I resisted because I wanted to delay getting the bad news.  It was like waiting for a response from an interview - I'm pretty sure I gave myself an ulcer.  As of today, it's so far so good.

As of Monday, they were also cut off from their medicated caffeine dose, which was helping them to avoid those apnea spells.  One of the conditions for discharge is 7 days caffeine and spell-free.  So the earliest they could come home would be on Canada Day.  But ANOTHER condition of discharge is that they have to be feeding tube free for 48 hours and in that time, gaining weight, or if they're breastfeeding, at least not losing weight (breastfeeding is a tonne of work for babies).  I breastfed them at each visit yesterday.  L, the goofy professor turtle is a champ - he took 10cc's each time and this morning did 15cc's.  Q, the placid mouse seems content to never, ever, ever take food orally.  He's lazy!  The nurses say that preemies don't get nipple confusion, and I'm so desperate to get them home I'd much rather have a bottle-feeding Q and work on the breastfeeding on my own time and in my own house.  Please send good feeding vibes to the babies so we can have them back!

There was a milestone graduation on the weekend - they got moved out of their incubators and into regular cots - which meant that now they could wear oversized hospital clothes:

LOL at my non-identical identical twins.

Also, I saw the paediatrician yesterday and the results of their follow-up brain ultrasounds were good.  Goofball Professor Turtle had some cysts in his brain that showed up on an ultrasound they did to check them out when they were having their apnea.  They see cysts in premature babies and usually they shrink on their own.  In the turtle's case, that happened.  One had disappeared and the other one was smaller.  The placid mouse also had cysts but they were so small they weren't of any concern to the radiologist or our paediatrician.  The turtle also had what might have been a small brain bleed (the radiologist wasn't sure) but that was also gone this ultrasound.  Hurray!  

The placid mouse has a bit of a droopy lip when he cries but his neurological scan was fine, so we just call him Jean Chretien and leave it at that.  So many things in such wee bodies!

Friday was a bit of a gonger.  We decided to take advantage of the fact that the Dotytron was off work to take the Big Yam to the zoo.  He was pumped, to put it lightly.  The whole time from the back seat of Eddie Van Halen he was bouncing in his chair and going, "The zoo! We're going to see lions! And chameleons! And seahorses!" and he basically rhymed off every animal in his 100 Animals book.  It was pretty cute.  He was so excited.  I feel like the Metro Toronto Zoo should give out t-shirts that say, "I Survived the Zoo Death March" because that's what it is.  Our zoo is freakin' huge!  And most of it is Africa!  It's vast expanses of sizzling concrete.  The Dotytron was living in 1982 and didn't know that the monorail was decommissioned like, a billion years ago.  It was broiling, but worth the $60 parking and admission (for two hours!), because the Big Yam had such a good time:

I packed us a signature Lagerfeld picnic lunch - Ontario strawberries, egg salad sandwiches, water.  Sign that I'm not on my A-game: I forgot the truly signature move - the Lagerfeld frozen towel in a ziploc bag.  

The NICU is a hilarious place - full of characters.  We have our one nurse, Pam, who is a fiesty black lady from the Barbados, who gets all juiced up from Chinese medicine before her shifts.  We have another nurse who is obsessed with space and doesn't believe the moon landing happened (she's been to NASA twice and thinks it's a fake).  LOL!  I asked her, "So you think it's a fake?" and she gave me this knowing look and said, "Why. Haven't. They. Been. Back."  Hahaha!  The 9pm shift is my favorite - the whole energy of the place winds down and it's just you and the babies and the nurses and everyone kind of relaxes and starts to cut loose.  There's another nurse who is obsessed with baseball, cats, and hedgehogs and is basically running a hedgehog sanctuary out of her home - she left the other week for some hedgehog convention in Baltimore.

I know we have it lucky - there are NICU babies who have it worse than we do.  As emotional as this process is, I am grateful for socialized medicine and the work of the nurses and staff who are looking after our babies.  The system is hurting though.  The nurses are generally assigned 4 babies per nurse and sometimes 5.  Since all the babies get fed on the same 3 hour schedule, I don't know how the heck they do it.  It used to be a 3:1 ratio.  Also, on nights when babies like ours are having alternating spells, the nurses are run ragged.  Pam definitely needed her Chinese medicine that night, resuscitating the twerps one after the other.  Also, when the NICU census is low, to save money, they start cutting shifts, which doesn't make sense in a hospital context.  You never know who is going to be walking through the doors of labour and delivery and what their baby is going to need.  It's terrible and I feel like we only care about the health care system when we need it and it's not something that we can afford to ignore.


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