Monday, June 17, 2013

Tales from the NICU

The twerps are almost a week old and it's been a series of ups and downs.  They had been doing amazingly, up until last Tuesday.  We showed up at the hospital on Tuesday in the morning to find that L was under the jaundice lights and both of them were hooked up to oxygen.  So I was like, "What happened?" and this Irie NICU nurse was like, "Those babies had me hopping last night!"  Apparently they were having "spells" which means they stopped breathing and started turning blue and had to be resuscitated and they had to be put on oxygen.  They were taking turns having these spells and had the nurse running around like crazy.

The paediatrician who had been on call was just going off duty and she came up to us and gave us the rundown.  She said that they had stopped breathing repeatedly throughout the night and they were going to give them a medicated dose of caffeine to help them breathe.  She said when preemies have these spells they start looking to see if they have an infection - but they'd both been on antibiotics since birth so she was going to be running them through blood work.  She said if they didn't pick up anything from the blood work then they were going to be sent for chest and stomach x-rays because if they continued to have these non-breathing "spells" that it could be necrotizing enterocolitis, which happens in preemies where parts of their gut start to undergo tissue death (with an attendant high morbidity rate).  A word you never want to hear in relation to your health - NECROTIZING.  Then she said if it wasn't that then they'd have to look at other reasons why they might be spelling and she was consulting with Sick Kids to rule out any other potential causes.  She delivered all this information in a very curt, matter-of-fact, bare bones way and I immediately started crying my eyes out and being super-scared and worried and wondering if I had done something wrong or if I hadn't washed my hands long enough or something.

I found out later from my midwife that day 3 or 4 postpartum is when your hormones are at their hinkiest - they're fluctuating like crazy and she said that I would likely be crying even if they weren't on the CPAP to help them breathe.  The paediatrician who had actually been present at their delivery, Dr. A., showed up to check in and the midwife spoke to her and relayed that according to Dr. A, the twerps were doing beautifully.  I updated my sister and she sent me an article on apnea of prematurity, which is REALLY COMMON in preemies.

Here's the thing: I'm not an irrational person.  If the first paediatrician had just told me that 30-40% of premature infants display apnea of prematurity, then I would have been like, okay, that makes sense to me.  But being inundated with all these worst case scenarios and having their little bodies taken for 2 sets of x-rays and then ultrasounds and having that information relayed to me without the benefit of a bedside manner, when I'm already hormonally overwhelmed, was really, really jarring.  It doesn't help that this is the hospital where Poppa D passed away, which is also probably the last time we had a medical professional giving us information in the exact same manner.  It was also really scary because I think we had been lulled into a false sense of security by how well they had been doing up until that point.  The nurses and paediatricians were all pretty surprised that they came out of the womb and were just on room air for the first 3 or 4 days of their lives - they had seemed to be thriving and so this setback took us especially hard.

Anyway, Q stopped having spells on the Wednesday and they took him off of the CPAP after he had gone 24 hours, spell-free.  L stopped having spells on Thursday or Friday and now they're both on what's known as "room air."  They're still in the incubators but are both off of their IV foods and are being fed my breast milk through a gastro tube in their noses.  However, lately they've been spitting up a lot, which means that they're not really tolerating the feeds.  So they have to rule out everything (and guess what rears its' ugly head?  NECROTIZING ENTEROCOLITIS!) before they come to the point where they determine that the spitting up is likely due to their immaturity (e.g. faulty acid reflux valve thing, or their esophageal muscles not being able to properly coordinate swallowing).

I'm learning through this process that it seems like it's going to be one step forward and two steps back with these guys.  I'm also learning to temper my expectations by reminding myself that they're not supposed to be out in the world yet.  They were 34 weeks adjusted gestational age as of yesterday.  They weren't supposed to come out for another 3 weeks yet.  They're learning how to do all this stuff that they weren't supposed to have to learn so soon, so I'm trying to be patient and cut them and myself some slack.

The earliest they would be released is 35 weeks and that's if they start feeding well and are gaining well.  We go to the NICU three times a day.  It has actually been a pretty nice transition period so far.  Even as I desperately want them to be home with us, it's been nice that we can drop the Big Yam off at daycare, go to the hospital, come home and do some baby prep, and then pick up the Big Yam, have dinner together as a family, put him to bed, and then either the Dotytron or myself will go back at 9pm for some more time with them.

The Big Yam has been acting up.  As my sister said, this age (almost 3) is a really challenging one.  My sister: "You should be allowed to hate your kids sometimes - think."  LOL!    He's a d**k a lot of the time - lots of hitting and he was throwing toys at his cousin all weekend.  It doesn't help that the twerps are at the BEST POSSIBLE AGE because their only job in life is to be soft little velveteen bunnies who make you want to cuddle them and kiss their downy little heads times a billion.

The Dotytron and I had a big talk about our discipline methodology vis-a-vis the Big Yam this afternoon, based on my reading this article in Slate about toddler temper tantrums.  I'm trying to be mindful of the fact that the Big Yam can sense our anxiety about the twerps' welfare and also that his schedule has been destabilized and he's experiencing a lot of displacement and doesn't have the language to properly express how he's feeling.  This past weekend my sister came up to help with the babies and so the Big Yam slept away from home and I think in combination with everything else, it was hard on him.  Last night, after a day filled with time outs and hitting his cousin and whining, he got a bath and the Dotytron went to the hospital and I put the Big Yam to bed.  We read a story under the covers and then I told him we had to have a talk about his behavior today.  So we pulled the sheet up over our head and I said that I noticed he hit his cousin a lot, and it wasn't very nice, and that tomorrow I wanted him to try to whine less.  Then we had lots of hugs and "kiss face" and he kind of repeated it back to me: "Tomorrow, no whining" and we read more stories and had more cuddles and talked about how much we loved each other and he went to bed.  He woke up this morning in a stellar mood.  I don't know if it was the talk or just having me around to put him to bed, but there was definitely a noticeable shift.

Sometimes I worry that we're too hard on him and we expect too much out of him, so I'm hoping to balance the disciplinary measures with an acknowledgement (from us) of the lack of capacity for impulse control and night time talks couched in a lot of love and kisses and hugs.  I'm a big believer in the fireside chat decompression.  We'll see how it works out.

The twerps look really different from each other right now.  They've been spitting up a lot, so they're being monitored for NEC (the gut-rot condition I talked about earlier), but it's more likely that they just have an immature digestive system and faulty acid reflux valves that will hopefully mature as they age.  They're still gaining weight so that's good.

Here are some newer photos.  This is L, who I can't get enough of.  Look at his little goofball face!  He looks like an old Chinese man (those baggy eyes!  Those jowls!) crossed with a turtle.  His eyes are super googly which makes for a lot of hilarious expressions and moments:

Q, on the other hand, is just so sweet.  When his eyes are open it looks like he's just anointing you with his benevolence.  It's like having the Dalai Lama look at you or something.  There's something very calm and placid about his expression:

I love them so darned much.


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