Mask Free!

We had a big milestone yesterday. Both the girls had a trial off their breathing support. Neither has really been on oxygen for very long, but they have needed a machine which maintains pressure on the airway, making it easier for them to inflate their lungs.  So far the “trial” has been successful, and while they may go back on if they tire out, they’ve both lasted well over 24 hours.  As one of our wonderful nurses said, “They can’t stay in kindergarten forever!”

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.

coraswad

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.

beaswad

Don’t Forget About Me!

It’s a good thing the mind only has a limited capacity for worrying.  I’ve spent so much time worrying over C that I forget sometimes about B. Which is funny because during the pregnancy I worried mainly about B, the smaller, underdog twin – the one whose water broke before she was even viable.

bea2

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.

beasnug

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!)
Mother's Day Card

Chats

I had a really nice day today – a nice nurse, a snuggle for hours and lunch with my brother that was not from a facility at the hospital.   The girls had a good day too, all of us cozied back in our new, more intimate abode in the less intensive area of the nursery.  I enjoyed them.

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.

20130508-222250.jpg

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.

20130508-222301.jpg

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.

20130508-222311.jpg

Tonic

Thanks for letting me get that rant off my chest yesterday. I had another teary departure as I left the twins today – it’s hard to leave. Then on my way out I ran into the antepartum nurse who spent so much time with me, and was so positive, throughout my pregnancy. She gave me a major pep talk as we walked to the car. I came home to a sunny house and had dinner with the kids and then I – gasp – went for a walk by myself after dinner. The last few months have been home, hospital, home, hospital, rinse, repeat. It is amazing what a tonic that walk was. All the things I love about life are still here – rhododendrons, my favorite cafe, ice cream, pretty little Vancouver houses, parks full of children, Louisa May Alcott novels. The same songs still make me smile. There’s still so much to rejoice in.

Onions and Orchids

Okay, I’m actually feeling pretty good right now, but there are really are parts of NICU life that really drag me down.

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.

doublesnugs

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

Isolette graduates

As expected, the conversation with the neonatologist quite depressed me and set me back emotionally a few days. I think it was intended to be a hopeful talk but I was so drained afterward I slept for 14 hours – waking only because of the neverending need to pump. I get the sense too that when I show sadness that they think I am grieving some sort of parental experience. I’m not. I’m sad for my daughter – for what she may have lost. I also don’t like how they keep eagerly offering to show me scans of her brain. I don’t want to look at a picture I can’t understand – I want to know what it means.

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

20130504-144812.jpg

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!

20130504-145848.jpg

And B in her big girl bed.

20130504-155512.jpg

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.

Two Weeks Old

I had a great day at the NICU today. First I had a double snuggle, which was wonderful. The girls were reunited at last.

DSC_0058

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.

DSC_0078

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.

DSC_0088

10 Days Old

coraslittleface

 

Cora showed us her little face today for the first time since she’s been off the ventilator.  When she’s on her current breathing apparatus, she needs a hat to hold the mask on, so much of her face is quite obstructed.  Today they switched her to a different one because her little lip was getting very irritated, and we could see her much better.

beaeyesopen

Beatrice had a brief moment of wakefulness during our snuggle yesterday.

 

Tired

I don’t know how I’ll ever repay all the wonderful favours – notes of support, food, and shoulders to cry on that people have offered in the last few days. I really appreciate it. I’m also finding it very therapeutic to just write here for a little bit. Although, I warn you that I am not as strong as I sound in here. At the end of the day I come home and I’m just completely drained. I can hardly move. I was flipping through C’s files and found notes about me being very “teary” which was kind of funny. I am totally the teary NICU mom. I was teary after all my babies’ births, but obviously much more so this time. I don’t think I’m being overly dramatic in saying that the past week has been one of the hardest of my life. I hope that doesn’t sound self-pitying because overall my life is pretty good, but it’s really hard.

Bright moments of the day: B was looking at me today, wide awake, which was very sweet. And now the girls incubators are side-by-side, which means that tomorrow I may even get to double snuggle!

We had a conversation with the doctor that left me feeling a lot more hopeful today. But then I just came home and collapsed and got myself completely upset again. Sometimes I wish I could just go to sleep and wake up a week ago… or six months from now.

Primaries

I had another piece of good news today… we now have two primary nurses for our girls.

The nurses work 12 hour shifts and care for two babies at a time. Unfortunately, B & C are not next to each other, although they are close, so we meet two new nurses every shift and there are 200 or so who rotate through the NICU. At first, I was extremely deferential to them, but I’m starting to learn more about my girls, and the ins and outs of NICU life, and I’m getting more assertive about their care.

You just click with certain people, and certain people disseminate information a little better than others. I had a disconcerting experience today where the nurse unloaded a bunch of information on me, and it sounded negative. I’d just walked in the door, sleep-deprived and already a bundle of raw nerve endings and I wanted to burst into tears. I asked for clarification from the doctor and realised I’d completely misunderstood and all was well. Still, that experience left me a bit shaken. It’s especially important to have people you trust at nights, because I’ve decided for my own sanity and fatigue levels, I cannot go over every night. My other kids need me too. But if I can pick up the phone and hear a familiar voice tell me what I need to know, that’s great. The solution is that you can ask nurses to primary for you, which means they will take your baby every shift they work. If we can line up a couple more than our babies will almost always be with someone we’ve picked.

As well, once the nurse knows your baby, she’ll knows what’s typical or unusual for her that day… which is important for any baby, but especially for C who needs close monitoring as a result of her bleed. I want the nurse to know that she does better on the breathing machine with a soother, or that her tummy might be puffy, but it could be due to the bili lights she was under two days ago. So I now have recruited two nurses (three actually, as two are going to split duties), which will at least cut down on the strangers handling my babies.

As for me, it clicked for me yesterday that I’m grieving. Anger, bargaining, denial. I’m rotating through those stages right now as I process all of this.