twins – Looking At Stars

The Twins Turn One

I almost forgot to mention a very important milestone around here – the twins had their birthday! I made a video, as I have for all my littles’ first birthdays. Theirs got to be extra long though, as I felt I had a license to be a bit self-indulgent since there are two of them.

I had mixed emotions as the day approached. Their birth was happy, but also terrifying. I was looking at photographs the other day of little B which J snapped soon after she was born. They are painful to look at. I realize how close she came to not making it. She was difficult to resuscitate. And then all the fears afterwards with C. But as my mother said to me, “THEY ARE WORTH CELEBRATING!” Yes they are.

We opted not to do cake or a big celebration. I didn’t even get them a present. Instead we brought 30 or 40 cupcakes and cookies to the NICU family lounge and left them there for the parents who have little ones there now. I hope we make it an annual tradition. I remember how I’d often just forget to eat because I’d be bundled up with a baby for several hours. Hopefully it brought a little bit of joy for some people in the thick of the never-ending NICU days. We also met up with two of our favourite nurses and they were able to have a snuggle with the little ones.

So here’s the video. I will warn you that the video contains many pictures of them when they were tiny preemies and it may be difficult for some to watch. But it also shows how far these brave little heroes have come!

D-Day

A few days ago, Cora was diagnosed with cerebral palsy. We’ve known since a few days after she was born that this would most likely be the case, though no one ever used that term. We have also known since she was four months that more than likely it would affect all four of her limbs. But because it’s hard to tell if a tiny infant has a movement disorder, it is typically not diagnosed until they are a bit older and are exhibiting delays. She is now eight months adjusted, and the tightness in her limbs, and the difficulty she has in moving is apparent to a more trained eye. Nothing has actually changed, it’s just that now a doctor is willing to affirm that yes, the brain bleeds have affected affected her motor skills. They still cannot tell us what it means exactly. Will she walk? Hold a pencil? Play piano? No one will say for sure. What J and I have read is that parental expectations are a huge determining factor, so we continue to assume that she will be running on the playground some day.

Before I get too far ahead of myself, you may be wondering what is CP? It is just an umbrella term for someone who had a brain injury before, during or shortly after birth which has affected their motor skills. In C’s case, it happened after birth as a result of her trials in the NICU. It affects approximately 1 in 400 people. For some people it might mean something as subtle as a limp. For others, it might be almost entirely incapacitating. The brain is a very complex organ and can compensate in very unexpected ways. It was once believed that it was a static condition, but it is now known that in some cases the brain can reorganize itself around areas of damage, so therapy can help a lot. It is very difficult to predict what it will look like early on, although we know it will not be at the very extreme end of the spectrum. But beyond that, we don’t really know what it will look like in Cora and no one will, or should prognosticate.

Even though I knew this was coming, both J and I have had an unexpectedly emotional reaction. I am so proud of the gains she is making, learning to use her muscles and working so hard to do what is easy for others. She is my little warrior. And I know that to be the best mother I can be to her, I need to keep moving on the path to acceptance. But… I’m not there yet. I still feel sad. And angry. And guilty. At the same time I’m so grateful, so proud of her, and feel so, so lucky to have her in my life. She makes my life better because of who she is, just like my other little ones do.

The diagnosis doesn’t actually change much in C’s life. She is already getting regular therapy, and she will continue to get it. We keep working with her, helping her learn to relax and use her arms and legs. We keep working with Beatrice too, who is apparently slightly delayed as well.

J sometimes says “Well it won’t get any harder than this.” And maybe it will or maybe it won’t. In the meantime, life continues, messy, beautiful, fun, ridiculous, mundane, absurd, with the occasional struggle but also lots of joy.

Checking In

My blogging software always ask me “What’s on your mind?” Well, before I sit down about a million thingsâ€¦ the softness of cashmere yarn, which I am knitting with for the first time; the lovely evening in we had recently with friends; how our physiotherapist helped me recognize the achievements that C has been making in the past few weeks, while I thought we were in a period of plateau. But then I sit down to type and all I can think is about how exhausted I am.

A few days ago I had a lovely day out with the “bigs”, as I think of them now. We went to the aquarium as a family, then dropped the babes at home. I took my bigs to get our nails done. P even got into it, choosing a sparkling red. (However, I think he had a pang of self-consciousness afterwards, which is a bit heartbreaking. He managed to chew several of his fingers quite clean of polish in time for school.) We also had sushi – love those $5 kids’ combos, and went swimming. It was sort of a glimpse into the future, and how fun all these munchkins are going to be once we’re out of survival mode. I feel like the first 18 months or so you’re almost just surviving parenthood and then somewhere around then the mists begin to part. We’re getting there.

B is finally getting a bit healthier and is not waking up in coughing fits multiple times a night. Sadly, she’s still out of sorts for much of the day. The appearance of two new teeth have probably contributed to the overall misery. She spoiled me, because she’s usually my sweet, good-natured baby who is so content. But lately the girls have switched roles and it’s C who will happily lounge, giving us big squinty-eyed smiles, and B who wants to be held all the time.

Someone asked me recently if I felt like I was back to “normal.” She wanted to know if I felt happy again after everything that happened in the NICU and the ongoing worries with C. No. I don’t think I will ever go back to feeling normal, any more than you go back to feeling like your old self after becoming a parent. Something has changed. But at the same time, it’s just a new normal. Parenting a child like C who is differently abled, disabled, special needs, extra needs – whatever you want to call it – 99% of the feelings are just the same as parenting any other child. I worry about all my kids. In this case, some of my worries are a little more concrete. I wonder if she will walk and how she will look when she walks. I wonder if she’ll need surgeries, or Botox injections to release her tense muscles. I watch M, age 3, carefully string tiny beads, or ride her balance bike, or draw a letter after being shown just once, and I wonder if C will ever have the manual dexterity to do those things. I wonder if there are other challenges ahead that we don’t yet know about, and what those might be. But she’s just my Coco – my beautiful fuzzy head, her head still slightly wobbly, her little neoprene gloves keeping her hands open, but with a big smile on her face. She is perfection.

I had this mild epiphany the other day as I was watching how easily (some!) things came to B, and wishing it could be the same for C. But she doesn’t need to me to torture myself with what-ifs. Especially right now, when she doesn’t even know or care about any of it. She will only know herself as she is, and she needs me to love her just as she is. And that I can do!

Not So Merry Christmas

Well, Christmas wasn’t exactly as we planned. For the second year in a row we were felled by illness, except this time it was not just J and me, but all the kids except P.

M was cranky for days beforehand, throwing herself to the floor every time one of us went out of sight, her eyes red and weepy. Just before Christmas Eve, C had a fever of 101 and I slept with her next to me burning up on the sheets. Little B had had a crackling cough for over a week and was very sleepy Christmas morning. When she woke up from her nap she was panting. Lifting her shirt I could see her little ribs sucking in and out. We live very close to Children’s Hospital, so I thought “It’s not going to be busy on Christmas. I’ll dash her over and hopefully we’ll be in and out in an hour once they tell me it’s just a bad cold.” In fact, it was very busy, full of feverish toddlers. But I said the magic words: “Tachypnic, 30-week prem” and we were seen very quickly. She needed oxygen for about a day and a half, and was admitted for two nights. I stayed with her, coming home just once for a few hours to eat and shower. Unlike the NICU, we had a private room with a cot for me, so that was good.

She’s home now, still cranky and coughing up a storm, but much better.

I took some pictures of the hospital – she looks pretty cheery in most of them, but not pictured are her whining and crying every time she was awake, having numerous coughing attacks or throwing up a mouthful of blood when she was suctioned too vigorously. Also, I never realized how often they come in and look at you. For a heavy-sleeping toddler, it would probably not matter at all, but babies are such light sleepers. I would finally settle her and then someone would come in to say “We forgot to measure her head on admission.” And then the resident would peek at her. Her eyes would flutter open, and the person would take that as a cue that she was awake and it was okay to handle her. So needless to say, when we got home we were both very tired.

Very grateful to have such high quality care so close, but hoping we have much less hospital time in 2014.

Surviving Life with Four Kids

I’m not usually big on advice posts. I actually abhor the advice culture that seems to permeate women’s and parenting magazines. Ever notice how men’s magazines aren’t constantly offering tips and hints on how to do ordinary tasks?

Still, I think I have figured out a few principles for surviving life with four, two of whom are twins.

Number one: I never plan to do anything that takes longer than seven minutes. There is a high chance that at least once every seven minutes some child will interrupt me. However, if I am thirty seconds into a task when it happens, I am probably safe to let that child cry, whine, or wait for at least six minutes until I finish whatever it is I am doing – be it showering, handling raw meat, boiling eggs, or having a Facebook conversation with my friend which will likely be the sole adult interaction of my day.

If I absolutely must do anything takes longer than seven minutes, I break it into seven minute parts. Also, if I get longer than seven minutesâ€¦ bonus! Sometimes if I am very lucky I might get an hour or even 90 minutes during which all my children are asleep or at least reasonably content. It doesn’t happen often, but when it does I am astoundingly productive. Or sometimes I just watch episodes of 30 Rock and knit. Like I said, it doesn’t happen often so I take advantage.

Also, I go to places where there are people around. I love my afternoons picking up P from school, even though it often means I wake the twins from a nap. That’s because there are usually moms there who are happy to hold a twin, point out if my toddler is about to leap off the jungle gym, or just chat to.

Also, I had to throw out all the advice that applied the first two times – Never wake a sleeping baby, sleep when baby sleeps etc. etc. I wake the girls to go to Mother Goose because it keeps me sane to get out of the house. Although I always napped with P when he was tiny, I have accomplished “sleeping when the baby sleeps” approximately twice in the six months since they have been home.

I often think “to each according to their need.” It’s impossible to slice your time evenly among four. If you are a happy relaxed baby and your sister is a bit higher needs and requires tons of physical interaction, you might find yourself woken from quite a few naps to go to medical appointments, and sitting in that bouncy chair through a lot of showers. I can’t feel guilty over this or try to keep score. When we do get “alone time” occasionally, it’s that much more special.

And last but not least, I get my groceries delivered. And I really wish I’d thought of doing it about 10 months ago instead of just six weeks ago. Worth every cent of the $8 charge.

Keep Calm and Carry On

I can’t believe that it has been six months since these two little people made their entrance into the world.

I had a bit of an epiphany lately with the girls. We had a big medical appointment for both, which involved assessing their motor skills. I was terribly nervous before the appointment and did tear up a few times. But after the appointment, I realised that these appointments do not actually tell me anything about my child that I do not already know. It was an empowering realisation.

We are starting to see now that certain motor activities are harder for Cora. Her head control is decent, but definitely wanes when she’s tired. She continues to favour one side. Her hands are not terribly coordinated and she will sometimes scream because she cannot release something she has accidentally grabbed. At times she flexes her legs and arches her back in a way that makes other people say “She’s so strong!” All the doctors and OT do is describe this in more medical terms – “very strong palmar reflex”, “when she tires, reverts to ATNR”, “tight heelcords”.

But she progresses. I wrote out some of her “challenges” a few days ago when I started to write this post, and already some of them have improved, and new ones emerge as we shoot for the next goal. The doctor said “Her milestones will be different.” It took me a while to figure out what she meant by that, but I think I get it now. We celebrate things that most parents don’t notice in their typical child – we cheer when she brings her hands to midline, or opens her palms without encouragement. That said, I do think some of her milestones will be the same. I do think she’ll sit upright and use her hands, and walk. She will have tantrums, make bizarre crafts that we can’t identify and fight with her siblings. And she already beat B on one milestone – she laughs!

I know I sound really positive here, and it’s not because I don’t sometimes grieve at the unfairness of it all, or fret about what the future might bring. But I didn’t want to write this entry when I was feeling low about it. This disability that she will have is part of her, but it’s not the whole story.

Changing Expectations

When I was pregnant with M, her ultrasound showed some abnormalities which indicated a higher than average risk of Down Syndrome. After some further investigation, we were told the risk probably wasn’t that high, and we opted not to do any definitive testing. Needless to say, I couldn’t put it out of my mind entirely and I thought about it a lot during the pregnancy. Obviously, she does not have Down Syndrome, though she did require a bit of follow-up into one of her issues after birth. She needed an ultrasound which would tell us if she needed surgery, or just monitoring, or if the issue had resolved. The test was done at Children’s and didn’t take very long, though I was quite nervous. The ultrasound tech had me wait, and came back five minutes later to tell me all was well. I have a vivid memory of the hour afterward. I went to the Starbucks at the hospital, so relieved that my girl would not need an operation. I sat there sipping a latte and feeling so grateful that I wouldn’t have to come back to that coffee shop for a long, long time. We were tourists at Children’s, unlike the many parents there who knew it well.

Three years later, I did become that parent – not the tourist, but the regular. Bea was in the hospital for 55 days (Cora 44), and I was there for 53 of them. Walking around between cuddle sessions at the NICU, I’d recognise three or four people – mostly nurses, or other moms, or people who’d been involved in the pregnancy. They knew my name at the hospital Starbucks, and my order. When I check in now for an appointment or test they pull out a map and say, “To get to Radiology you go…” I stop them right there. I know where Radiology is. I know where the Blood Lab is. I know when the coffee shop has its coupon giveaways or what time the breakfast special at the cafeteria finishes. I recognise the janitorial staff. I know where the physio offices are and where they used to be before they moved. Children’s is attached to Women’s Hospital and that hospital place well now too, having visited once or twice a week for two months.

I was there again this week as C was having a hip ultrasound. I popped by the NICU briefly to see if any familiar faces were around. I didn’t see anyone and left, but walking down the hall I saw a mother who I recognised. Even when my girls were brand-new, she seemed like she had been there a while.

My girls have been home now for longer than they were in. That’s hard to imagine because the NICU time seemed so interminable, and the time since they have gotten home has flown by. As they say “I don’t know what the future holds” but right now is good. I’ve taken my babies to the park. I wake up with them each morning. I get to take them out to eat or the frickin’ PNE. I get to see every smile. And so we might become frequent fliers at the hospital. I might pass that coffee shop several times a month. But right now I am grateful for other things.

Late Night Posting

The last thing I should be doing right now is blogging, since I have to be up in, optimistically, three hours to feed two girls, and for some bizarre reason I had insomnia last night, resulting in even less sleep than normal. But here I am.

You may have noticed in some of C’s pictures that she has numerous small red marks on her face, mostly on the left side. In fact, I counted them once and she has at least 25 on various parts of her. They’re little birthmarks called hemangiomas that will apparently disappear by toddler-hood. I know kids who’ve had one or two, but I’ve never seen a baby with dozens like she has. They even did an ultrasound to make sure she didn’t have any internally. We get lots of comments about them, especially from the 5-year old set. I think my favourite question was “Why does she have polka dots?”

This morning she had been fussing during a nap, so I went up to peek in on her. When I got there I saw what had set her off. Her face was covered in blood, with two especially big smears under each eye like a football player. The sheets were covered in blood too, and on close examination, she’d scratched one of her marks open. In the midst of all this carnage she had fallen back asleep and was dozing peacefully. Not for long though since I was expecting someone and certainly felt I should clean her up before they arrived!

And in other news, Bea has really ramped up the smiling lately. It’s such a cute little toothless grin. I love it.

Update on C

I’ve been meaning to do a more robust Cora update for a while, since I know I’ve been a bit vague about it.

We were told Cora had brain bleeds (intraventricular hemorrahages if you want to get specific) when she was five days old. Â We don’t know exactly how it happened, but it was almost certainly related to her ruptured lung and the events that followed.

The bleeds were monitored closely, and caused permanent injury to two areas of her brain. Â That injury will always be there, at least when you look at a scan. But how it will affect her is a huge unknown, because infant brains can rewire. Â I remember seeing what the doctor wrote in her files, which I read diligently. Â It was something like “I informed the parents that there is a high risk of severe neurological impact, although I emphasised that outcomes vary considerably.”

During our six weeks in hospital we saw medical professionals at both ends of the “optimism” scale with some who were quite negative and others who were sympathetic but also told us not to worry so much. In short, things could be major, or they might be minor. Â What the likelihood is of her being at either end of the spectrum is something I was always too scared to ask. Â And of course, a large part of what constitutes “major” is quite subjective, depending on your own attitudes about disability. Â There are outcomes that might worry others more than they do me, and vice-versa.

Right now, C is like any other baby of her adjusted age, at least to us. Â I’d be lying if I said I didn’t think about IT a lot, but I certainly don’t worry about it as much. Â She feeds well, she recognises me, she does not seem stiff, she moves all her limbs, and she is feisty and alert. Â She is gaining head control and is able to push herself up and hold her head up quite well. Â Sometimes I notice subtle things – like she is stronger at holding her head up when looking left. Â As soon as I notice it, we start working on it in simple ways – calling to her from her right or encouraging her to feed with her head tilted that way. Â She is being monitored quite closely and when she’s four months adjusted she will have an in-depth assessment, so we may know a bit more then, although obviously again she will still be very young.

So for now, she is doing great. Â I write that, even knowing that I might jinx it, and even knowing that there is so, so, so much more that needs to happen before we have a sense of what life will be like for her and us. Â I’m not naive enough to think that her behaviour at one-month adjusted means we’re out of the woods. Â Not by a long shot. Â But at least for the moment, we can focus on enjoying her and on being positive. Â Which is a good thing no matter how it all ends up.

No Time for a Title

The girls are roughly three weeks “adjusted” now, and they are starting to be far more alert. They aren’t content to take long naps in their bassinettes – they need to be held. This would be fine if there was one, but holding two is a bit tricky, though I am learning to master it. Mostly, I don’t mind, unless the remote is out of reach.

I keep starting entries here and getting interrupted. Funny thing about that.

Topics that have occurred to me:
-anecdote about “artistic” nursing photos I found on my camera taken from toddler-eye view
-discussion of an interesting TedTalk I watched on neuroplasticity by a paediatrician and former neonatologist at Sick Kids Hospital. Â A lot of the neuroplasticity reading I’ve done says that rewiring of the brain is clearly possible, but I’m left wondering why it works for some and not others. Â This talk provides one theory and her blogÂ seems to have some great tips for parents of brain-injured kids.
-discussion of what I’ve been knitting/sewing (not much but I do have a project in progress in each respective art form!)
-recounting amusing conversations with P
-weighing of pros and cons of each twin (C is more demanding but takes longer and more solid sleeps during the day and night; B takes mini-naps and wakes 4x a night but is a little more patient when awake… which is a lot of the time!)
-listing of sweet/funny/irritating things people say when they find out you have (a) preemies (b) twins or (c) both.

Oh well – soon! In the meantime, both girls are doing really well, eating and growing and I even got a smile from B. C is a solid little chunk now at over 9 pounds and is super cute. B is more delicate but she’s definitely looking like a lovely little baby and less like a prem.

B, staring up at Nana:

C, snuggled up with her big sister.