And I held onto that feeling all day until I came home. Over dinner, I listened to the song again, but this time I felt utterly defeated. I just want to scream, “How, how, how, did this HAPPEN?”

During my whole bedrest, I was always optimistic. I mean, I had low moments but for the most part I felt like we were going to beat the odds. I was confident we’d get them to viability and beyond, even though every academic article on the issue said that was an extreme long shot. I was able to rationalise every statistic and why it didn’t apply to us. We did beat those odds. But then on Day 3 of life we had a devastating event, and the result was this bleed, which is extraordinarily rare at 30 weeks. Now that I’ve played those odds and lost, I feel like I’ve lost a lot of my optimism. When they say “She has a 70% chance of x” as if that’s a good thing, I can’t help but dwell on the 30%. And when they say there are things she may never achieve… well, I get stuck there. It’s very hard too, because we have been told different things – some people just frame the prognosis so much more pessimistically than others.

I need to get back in the “We are not a statistic” mindset. There ARE good stories out there, optimistic stories with happy endings. Google tells me so!

And at the end of the day, maybe I was crazy to think we’d get out unscathed. 95% of 30-week babies survive, but that still means that 5% don’t, and I’ve seen that firsthand now. My girls are still here and they are, outwardly anyway, healthy and strong. There is a lot of uncertainty ahead, but uncertainty also means possibility. She will tell us what she needs and what she can do better than any doctor can.

I know I will feel much happier once they are out of the NICU. It’s a tremendously stressful and sad place, so it’s very hard to live in the moment when you are there. Getting them home is my major goal. To graduate, they need to be off breathing support, be stable health wise (including no apnea, bradycardia or oxygen dips), and be feeding orally. They’ve done part one. I can’t control when they achieve part two, but I see improvements every day. So now I’m doing my damnedest on the third part. I’ve never had to train a baby to eat before, let alone dealt with two who can only stay awake for a few minutes and who tire after just a few moments of nursing. But we are going to get it done, because I think the best thing for all of us will just be being together again.

The low was that C had her next head ultrasound bumped forward as her head is growing a bit faster than they would like right now.  We know that her injury will likely manifest later in some way, but since the last few ultrasounds indicated no real change, we were hoping things were stable with her right now.  She looks like the picture of health, so I just get to feeling happy and complacent and then something sets me right off again.

But another high is that they both remain off CPAP (aka breathing support), which is fabulous.

Even a few days ago, C didn’t have much stamina when she was off support for things like baths. But she’s had very few “dips” (in oxygen levels). B has done very well too – she does have more frequent spells, but I think it’s partly because she’s smaller and when her stomach is full at the end of her feed, it takes up a lot of breathing room.

There are many nice side effects to having them off the support – they’re much easier to hold for one.  We don’t have to tape four tubes to the chair, and their little heads aren’t weighed down by the equipment.  The only wires on them right now are the leads monitoring their hearts, breathing and oxygen levels.  Also we get to see their little faces, since the hats and masks obstruct them. B’s face was highly indented by the straps, and she’s already looking much cuter! Finally, if they can manage without support and too many dips, I can try nursing them. Right now they are tube-fed but both of them are acting like they will be ready to feed soon.

(Roller Skate Dress courtesy of Mum, Size 3, pattern by Oliver+S)

What I wear when I dress myself:

(Fairy wings courtesy of Dollar store)

What I wear to the park:

(Boots courtesy of not having a single pair of shoes that fit; Fairy wings: See above.)

What I wear to bug my sister:

(Shades courtesy of M)

Thankfully, since B was born she has suffered only the “typical preemie” stuff – heart murmur, a low grade bleed that has resolved, and the occasional day where the monitors ring.  But yesterday, B reminded me not to forget about her. I was holding her and suddenly the monitor rang, as it often does. Only this time, her oxygen dipped lower than I’ve ever seen it – it slipped into the 60s.  The monitors normally rings if it goes below 86.  We stopped her feed, repositioned her, suctioned her and it sloooowly came back up.  Five minutes later it began ringing again, with red lights flashing.  I looked down at her and she was completely ashen.  She had lost all colour and her oxygen level was now in the 50s.  You always hear that expression about someone turning blue, but I’d never seen it before.  Two nurses rushed over and took her from my arms to revive her.  She was probably only gray for a minute but it was a very, very long minute.

I left an hour later as it was close to 11, but I had quite a sleepless night.  We never figured out quite what caused it, although my own instinct is that there was something awry with the feeding tube.  It all happened shortly after she started feeding, then she recovered when they stopped the feed.  When they restarted it, she got far worse.  To be on the safe side the tube was replaced, her oxygen probe was changed and she was repositioned, and she tolerated the rest of the feed well (though I was too nervous to hold her again right away!)

Here she is snoozing after giving me a heart attack.

When I got home I said to J that I felt so guilty that I hadn’t worried as much about B when she is also so fragile.  But crying twice as much doesn’t help anybody.

She had an uneventful day today, which is good. So after a week of status quo, they have decided to try weaning them off the breathing support again. I’m sure there will be some element of two steps forward, one step back, but fingers crossed.

And in sweeter news, P brought home this Mother’s Day card.  (We’ll see how long he’s grateful for this!)

I tend to keep to myself at the hospital.  Today I didn’t – I talked to a mother who was told that her baby had an infection, and that babies die of infections all the time. I talked to a mother who said she’d been told her baby would never walk or talk. I saw a family who’d been acting celebratory in the lounge a few days ago come out of a meeting room teary-eyed and silent. After a day like that I had to flee and go to P’s soccer game.  There’s something quite soothing about watching half the team kick the ball to the wrong end of the field while the other half sits down and eats grass. I couldn’t even feel annoyed when M had a twenty minute screaming tantrum because she wanted a muffin at 6:45 p.m.

Some obligatory NICU pics – I dressed C in a quite-impractical (no snaps for leads) but very adorable onesie. She’s my little heater so she needed some trendy short-sleeve clothes and the worn-out NICU onesies just weren’t cutting it for her.

B tends to be on the cool side so we keep her wrapped in a warm towel when she’s doing her skin-to-skin.

M made me a crown at daycare.  After the last few weeks I feel I deserve it!  Also I don’t think I look as tired in person as I do in this picture.  Then again, maybe I do.

For example, I just called for an update, and I find out the kids are being moved… in 5 minutes! Now, this is good news since it means they are progressing to the less intensive nursery, but why wouldn’t someone let me know that was possibly happening?  What are the implications? Is it the same medical team?  I have no idea because no one has told me that this was in any way imminent, despite the fact that I attend rounds almost every day.

Another annoyance: not being told that a surgery is scheduled in their room (yes they do surgery IN the NICU) which means I can’t get in to see the kids all afternoon.  Now I get that there are emergencies and sometimes no time to tell parents.  Also, I would certainly want others kept out if they were doing procedures on my girls.  But it’s a little annoying to go for lunch, come back 15 minutes later, and then be barred from the room for an unspecified amount of time with no one giving any update or announcement when the room is open again.  I spent an hour in the lounge and then another hour watching HGTV in the pump room before realising that they had accidentally left the “no access” sign up long after the surgery was done, by which point I had to go home to the other two.

Not enough chairs – there is not a big chair by every bedside, which means that you have to race around finding them, and at ‘peak’ snuggle times, there sometimes aren’t enough to go around.

Rounds – sometimes I’m there snuggling my girls, and the team is doing rounds, and no one addresses me.  Now, to be fair, this probably is the minority of occasions, and certain doctors are very good at touching base, at least to let you know “no big changes today!”  I also feel like they are a bit more cautious with me since C’s diagnosis, since I’ve said I need information parsed out to me slowly.  But still – if I’m there, talk to me.  The nurse can also make a huge difference as the best ones makes a point of including you.  I’m there every single day watching their progress and counting their “desats” or “bradys” – what I think matters!

One bathroom for every single parent and visitor in the area.  ONE!

Now, just so I don’t end on a negative note, let me try to think of things that are good…

The nurses who coo over the babies, and pick out matching linens, or cute clothes for them, or who go above and beyond in making sure you feel comfortable.  The TV in the pump room.  The quilts they deliver for every baby.  The fact that they take my 2 a.m. calls with a lot of patience and explain exactly what’s happened over night.  The fact that we can drop by at (almost) any time and the nurses will train you how to change diapers through an incubator, or clean your baby’s mouth, or listen to your 5-year old talk about Ninjago lego endlessly.  And, most importantly, the fact that if it weren’t for the NICU, my girls would not be here.

Also, yay to my husband who has talked me off the ledge many times in the past two weeks.

I was buoyed afterward by some double snuggles. Being with them is very calming for me.

Both girls also graduated from their isolettes today into a crib (for C) and some sort of combination bed (for B). This change means they get dressed! I forgot to bring my few preemie onesies so for now it’s hospital garb.

C was not impressed with the concept of clothing!

And B in her big girl bed.

They may also try B without breathing support early next week as she does well. C is a few days behind her because of her lung injury but fingers crossed we get there soon.

After that, we gave them a bath, so I got to see them without masks and leads and everything for a few moments. Both girls did great without the breathing support.

This picture of B makes me laugh, because she looks more like a bird than a baby.  Part of it is because her face is indented from the mask. But I think it gives a sense of how tiny and fragile these little people are.

Cora also did wonderfully and cried loudly after being bathed. Then she gave me some eye contact. We have another meeting tomorrow to talk about the future and the kind of follow-up care she’ll get given her diagnosis. I’m not sure I even want to talk about it though, because at this point I’m just learning to live and enjoy the moment. I can’t control what’s ahead and no one can tell me with any certainty what it looks like, so I think we just need to forge ahead together and enjoy the positive moments.  Here’s a picture of C.