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.

Patient Histories: A Cautionary Tale

Today the girls had a doctor’s appointment. It was supposed to be just a quick pop in for a needle. My doctor was running late, which is very rare for her. So a medical student came to take me in. I cringe sometimes when I have to deal with students, or the very junior residents. When I was going through my nightmarish pregnancy, I learned to take everything they said with a grain of salt as they were inclined to present worst-case scenarios. The older doctors (with some notable exceptions on both sides!) are much more measured and more accustomed to dealing with high-stress scenarios. But I also recognize that dealing with these docs-in-training is a necessary part of being treated in a teaching hospital.

So the student flips open the very THICK file and says “Oh, so they’re preemies?” I knew it was going down hill from there. She hadn’t peeked beforehand into C’s two-inch thick file. “Did you have a complicated pregnancy?” I said yes. “What were the complications?” That alone would fill a page of notes, but I whittled it down to the main issue. “Were they ever hospitalized?” Um, they were 30 weeks! (It says that on pretty much ever page of their files, I’m sure.) I’ve never heard of a 30-weeker who was not hospitalized, at least briefly. And then “Oh, I see she had an intracranial hemorrhage. When did that happen? When did you find out? How did they diagnose it? What caused it? Why did she have a chest tube?”

Why, why, why did I not cut her off and tell her tersely to read the file? I don’t know. Because I have that uber-Canadian desire to be nice, and not to offend anyone. The questions kept going. “What symptoms does she have?” (I am sure there are at least two reports about her physical challenges, including a report from a developmental paediatrician.) And then my favourite: “Do you have any concerns?” I think it’s safe to say I have a lot of concerns. But I don’t feel like getting into them when I came for a 5-minute shot appointment.

Just to cap it off she asked several questions about her facial birthmarks. The med students always love to ask about the birthmarks, which are completely benign. Once a student even said, right in front of me, “Doctor, what are those facial lesions?” It’s not like I forget they’re there – I’m used to people asking questions about them, especially at school. But I’m not sure why a doctor needs to comment on an unusual facial feature when you’re there for totally unrelated reasons?

I answered all the questions. In fact, I think I educated her. It didn’t seem like she knew the kinds of challenges these babies face – pulmonary hemorrhages, routine head ultrasounds, chest tubes, respiratory distress. She had lots of questions about it all.

And then I got home and wept. I mean, if I had been there about myself, or even one of the other kids, I’d probably have been grateful for her attention to detail. But I’m fragile when it comes to C. Those events, just a few short months ago, were incredibly traumatic. They are almost more traumatic in the reliving as they were at the time, since at the time I didn’t really understand the implications.

I have to deal with a lot of medical professionals – physiotherapists, early intervention consultants, follow-up clinics and various specialists. And I can deal with them. I can tell them what they need to know. I can point out the positive. I’m always happy to update friends on what’s going on too. I cope really, really well. But I hate looking back, and thinking about those early days and how much they will define her life, and how she almost died, but instead just got a brain injury.

I called the doctor’s office when I got home. I cried on the phone. My doctor apologized and took responsibility. I’ll probably never see a medical student there again. And hopefully the med student will have learned a lesson: (1) Read the file. And (2) More questions don’t mean more thorough care. Sometimes it’s better just ask “What can I do for you today?” In which case I could have responded “We’re here for the flu shot” and my morning would have been defined by this happy face.

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.

Tummy Time is More Fun with a Friend

Reorg

I’m reorganising the categories of the blog a bit, so if you read this on an RSS reader, it may look like I published some new entries when in fact I was just editing older ones.

When my twins were in the NICU I was always trying to find blogs about babies who have been through something similar, particularly for multiples and particularly with for babies with the Grade III and Grade IV IVHs. I read quite a few of these blogs “cover-to-cover” trying to figure out what kind of outcomes were possible and what sort of symptoms I might see. Outrageous Fortune has been a wealth of information. I also frequently checked Cox Quads because it was one of the few that has followed the kids to an older age (they are now four) and she summarises some of the kids early visits and assessments with their paediatricians.

This blog isn’t just about prematurity. It’s really just a blog about my personal life, which involves a whole random assortment of things. But I know there are some people who come here via search engines searching for information about premature babies in the NICU, or about PPROM and possibly those people don’t want to sort through 20 posts about socks to just get to the answer: WHAT HAPPENED? Unfortunately I don’t have the answer… at least not yet. But at least now what I do know is a little easier to find.

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!

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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.  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.  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.  I remember seeing what the doctor wrote in her files, which I read diligently.  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.  What the likelihood is of her being at either end of the spectrum is something I was always too scared to ask.  And of course, a large part of what constitutes “major” is quite subjective, depending on your own attitudes about disability.  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.  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.  She feeds well, she recognises me, she does not seem stiff, she moves all her limbs, and she is feisty and alert.  She is gaining head control and is able to push herself up and hold her head up quite well.  Sometimes I notice subtle things – like she is stronger at holding her head up when looking left.  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.  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.  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.  I’m not naive enough to think that her behaviour at one-month adjusted means we’re out of the woods.  Not by a long shot.  But at least for the moment, we can focus on enjoying her and on being positive.  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.  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.  This talk provides one theory and her blog 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:

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C, snuggled up with her big sister.

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Due Date

Today is the girls’ due date. Of course, we all know due dates are fictional. I remember going out shopping on P’s due date, and as people often do, a woman asked me when I was due. “Today!” I said. She looked at me a bit confused and then smiled widely. “Oh, are you going to the hospital later?” she asked.

Being twins, their due date is even more fictional than most, but there’s still something symbolic about it. If they’d been P, they wouldn’t have even been born yet. If they’d been singletons, they might still be in my belly. If everything hadn’t gone so crazy with the pregnancy, they’d be just a few weeks old instead of more than two months old. They might even look different. They would have little round heads instead of long skinny “preemie head.” C wouldn’t have her two little chest tube scars… or other more invisible ones.

I’m trying not to dwell on what could have been. What could have been is not. And could have been worse. But today I’ll let myself dwell for a moment or two. But not for long because I have two sweet girls who tend to be quite demanding between the hours of 8 and 10.

Early Days

Both girls are doing great. Bea is still having trouble gaining weight a bit and she has a serious case of snuffles, but I hope she’ll be up over 6 lb at their next appointment.

snooze

Two babies are a game changer. With one baby, you have a few periods during the day where they’re asleep for an extended period – you know so you can shower or eat. With two, they never seem to coordinate.

With one, you can hold the baby and you still have a free hand for a coffee or a snack. With two, if they both fall asleep on you, you’re pretty much paralysed for the next hour.

With one, you can remember that you changed the diaper not-so-long ago. With two, you go to change the baby and realise she’s soaked right through. Then you realised you probably changed the other baby’s diaper three times when you thought you’d changed her.

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This summer will definitely be the season of doing nothing – if all I accomplish is a shower and picking up the kids on time without forgetting to eat, I’ll call it a win. My greatest accomplishment this week was nursing one girl while changing the other – big excitement!

P.S. In case you’re wondering about the picture, I don’t let them sleep on a pillow unless they’re on my lap… but so darn cute.