Preemie Stuff – Page 5 – Looking At Stars

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.

A Good Day

Today was a good day. B has now weaned off her ventilator and has been hanging steady for a couple of days, breathing with just a little assistance. We’re thrilled about that.

C had a good day too. After her lung issue, she had minor surgery, and was on morphine with a(nother!) tube coming out of her. As of today she is back off the ventilator, and the tube has been removed.

The bad news I referred to yesterday, was that we learned that she has had a significant brain bleed. When three neonatologists, including the head of the whole centre come to find you, you know it’s not good news. We don’t know when exactly, or why, or how, although in the 24 hours since we learned I have puzzled over all those questions over and over. It seems so horribly unfair, especially as this condition is extraordinarily rare in babies this far along. It’s not something we can see on observing her, nor will we understand what it means for months and months. She is an active and beautiful baby.

Understandably, this is pretty upsetting, especially with a million post-partum hormones flowing through me, but we are going to live in the moment and our hopes and goals are shifting but are ultimately the same. I remember reading a book once with a line about how a mother’s love goes where it is needed the most, and I’ve never felt that more than now.

And just for the record books – Dad’s first diaper change!

5 Days Old

I wanted to come and write out my birth story and how that all happened and some of the moments of joy in the insanity. But as so often happens, events have overtaken things and last few days have been difficult. Cora, Twin A, just can’t seem to catch a break. Initially she was was doing well, but she has now been ventilated for several days, has had a lung collapse, and generally a tremendous amount of stress. We’re also in a bit of shock about other news we got about her, which I am not yet ready to talk about. I can’t wait until she is off some more of her tubes and I can hold her again. We keep thinking that maybe today will be the day, but so far we just don’t know.

Beautiful Beatrice, who was the twin who was ruptured for so long, is doing very well and when I called at 6 a.m., they said she’d had a great night. We anticipated her having lung problems due to PPROM, and she did at first, but she is holding her own and is breathing with just a little help, so we hope she keeps holding her own and wailing her little wee kitten cry at the nurses when she is annoyed.

What is tremendous is how much I love them both despite all the tubes and machines.

Birth

I wanted to let you know that the twins were born at exactly 30 weeks when they decided, rather quickly, that it was time to come. They are 3.6 and 2.9 pounds respectively – quite respectable weights for their age. Both seem pretty well all things considered although its very hard to see your babies so small and fragile and hooked up to so many machines, undergoing necessary but invasive procedures. It’s been very emotional. Yesterday I got some skin to skin with the bigger twin and even changed her diaper – big milestones around here. I’m also still in the hospital recovering from surgery, which is quite, well, different. More to follow soon.

28 Weeks!

Phew – 28 weeks! And a great non-stress test. Plus a taste of spring to celebrate.

Flowers

It’s very hard to be in that “nesting” stage of pregnancy and yet more or less bedridden. I am feeling far enough along now that I am starting to let myself think about all those things that were too hard a few weeks ago. Double strollers, decorating the bedrooms, knitting baby blankets. My doctor said if we get to 28 weeks, order flowers; if you get to 30 have cake and if you get to 34 time for bubbly! So we’re just a few days away from ordering flowers.

The babies are growing well too, if the last ultrasound was accurate. I can’t remember exactly what their weights were but at they said Baby A was around 1500 grams, which is over three pounds. And Baby B was around 1200, which is well into two-pound territory. All these numbers take on overwhelming importance to me because I am constantly calculating and recalibrating the premature birth statistics. I have no real baby in front of me to marvel over – just probabilities.

The odds get better but the symptoms of PPROM get scarier as time goes by. A week doesn’t often go by without some new and alarming physical symptom. I’m learning to take them more in stride. And when I get a bit panicked I call the nurse or the doctor. Having a non-stress test every couple of days eases my mind a lot too. I try to remind myself that in obstetrics, despite what you read, things rarely happen without any warning at all.

Despite the roller coaster, my stress level is much lower than it was two weeks ago. I’m not bursting into tears when the local botanical garden refuses to extend my membership (which I can’t use!) or sobbing randomly in the evening anymore. The doctor’s visits are far more optimistic. We’re starting to discuss the end-game here, which wasn’t always on the table earlier.

I watched a Netflix documentary last night called Little Man. I wouldn’t have been able to handle it much earlier, as it deals with the birth and treatment of a 25-week, one pound, growth restricted baby. But it certainly shows the kinds of moral hazards associated with resuscitating extraordinarily preterm babies. I don’t envy the jobs of neonatologists – all of us parents want miracles. But for now I’ll settle for at least three more days of being pregnant! And then two more weeks… And then Baby A flipping down so she’s not breech… and then, and then, and then.

Knitting Therapy

Someone asked if I was engaging in knitting therapy and I most certainly am. And proving that crafters are some of the most generous people, my knitting instructor even came over to give me an at home lesson since I had to drop out of the class I was taking.

I’ve finished all my works in progress – the main one being Levenwick, which I cast on back in August before the crazy part of 2012 – selling our house, moving twice, P starting school, getting pregnant – descended on us. Of course I couldn’t remember the needles I’d used, and my knitting gauge and consistency has changed considerably. The top part is a little imperfect but I love it, and it works very well as a maternity sweater even though I can only get the top couple of buttons done up.

Knitting is soothing and keeps the mind from being too active. Also, it can be done while reclining, which I am supposed to be doing nine hours a day. Even typing is hard to when lying down.

The day I found out about the rupture my blood pressure rose up through the roof. The nurse kept saying “That can’t be right!” Then I pulled P’s unfinished Owlet out of my bag and started a row of stockinette. She wrapped the blood pressure cuff around my arm again a few minutes later and my pressure was back within normal range.

I say “found out” because I’d been ruptured a week at that point, but they couldn’t confirm it. After two trips to labour and delivery, they scheduled a follow-up ultrasound to confirm all was well. Instead, they could see there was water pooling between the two babies. The doctor who’d seen me at L&D when I initially went in came in to give me the news. She has this incredibly calm manner and so I took a deep breath and headed off to my appointment.

First they sent in the resident who started telling me there was no rupture again. “No it’s been confirmed now” I said. He insisted it wasn’t and told me women were mistaken about this all the time. “You’d be surprised!” he said. “I have two children and I don’t get surprised” I said. Turns out he hadn’t seen the ultrasound report yet. Soon, another doctor came in. She had that warm reassuring manner like the first doctor, so I cried. She got me a sandwich since I’d been waiting to see her for so long.

That was a month ago and now we’re now at 26 and a half weeks. We’re entering 80 to 90% territory in terms of survival which is always reassuring. Although 10-20% is still kind of scary especially because there are mitigating factors that make things riskier for these two, especially Twin B. A is the most active baby I’ve ever had. She’s constantly kicking and squirming and twisting. She’s breech and she butts her little head up against my belly. B, my little ruptured B, is my quiet one. I imagine this is as much a function of having less room in there as it is of her personality, but I still think of her as the subdued type. Last night I felt her hiccups for the first time. I always loved that feeling with P. But instead of just enjoying it, it starts a cascade of thoughts – She’s drinking which means there must be fluid around her right now. She needs fluid to keep exercising her lungs and kidneys so she’ll have the best shot on the outside. But don’t bump around too much in there B, or the leak will get worse.

And time ticks on – M and P go to the park, or go on bike rides and playdates. J buys groceries and run errands. And I move from upstairs to down, or take my occasional field trip to the hospital. I get anxious when the kids are away from me, which is strange because when I’m at work I never worry about them. But at home in bed or lying on the sofa all I have is time to think. I try to stay away from the PPROM websites, of which there are many, but I can’t always resist. Many are positive, many are not. The ones that scare me most are the ones who make it weeks like I have and then still go wrong, but I have to just rely on the fact that I can’t control that, and take comfort every day when the nurse comes and finds their heartbeats galloping away.

P took a music camp over spring break and came home singing about Mozart and Vivaldi. He even painstakingly copied out some sheet music. Of course he chose to do this while we were all eating dinner, but who wants to stop genius for a meal?

One Day At a Time

Another week of PPROM, almost 25 weeks now. On the one hand, I’m breathing a little easier. On the other hand…

“At 25 weeks, we sometimes counsel not to resuscitate.”
“At 25 weeks, your chances of bringing home an intact child are less than 50%”
“A 25-week preemie can spend up to one year in the NICU.”
“The following factors can adversely impact the survival rate – multiples, uterine leaking.”
“Survival rates improve every day but the rate of brain injury doesn’t go down significantly until after 28 weeks.”

I like the approach where I am, which is very much about involving parents in all decision-making. “We will go on this journey together.” But sometimes I just don’t want the information. I can’t tour the NICU right now. Maybe in another week or so.

Now that I have reached the magical 24-week threshold I have a nurse who comes to monitor me every day. They tell me they see the pre-term labour people three times a week, but us PPROMers get a daily visit. I have a homework chart and I graph my temperatures. They listen to the babies every day. Every other day I get a non-stress test and spend 20 minutes watching the babies heartbeats rise up and down, watching for the appropriate accelerations when they move.

I wouldn’t say the rupture is getting better – I hoped it would, and that it would just heal up after a couple of weeks of rest. That hasn’t happened, and sometimes it seems worse. But they stay there still enough fluid around little Baby Girl B, so thus far it’s regenerating faster than I’m losing it.

Socks and More

Okay, updates! Once again, been a bit of a while. I had a great January and start to February. J and I took a grown-ups only trip to Los Angeles, which was a ton of fun. It was meant to be a bit of a pre-baby-moon, as they say, and I’m glad we did it. We drove all over the city in a tiny rented Fiat and even saw a few celebrities. I knit my first toe-up socks, with this extremely satisfying toe-up cast-on method. The pattern is Cat Bordhi’s Pussy Willow Stockings from my book Sock Master Class.

Then, about 2 weeks ago, after a wonderful shopping trip at the Lego Store, my water broke, around one of the two little twins. I won’t go into the gory details, but it was a slow trickle and took awhile to diagnose, but eventually the doctors were able to confirm it by ultrasound. This kind of preterm, premature rupture of membranes (PPROM) is obviously a potentially big problem at this stage of pregnancy (21 weeks when it happened, 23 weeks now). But there’s not much you can actually do about it except sit and wait and see what happens. So I’m sitting (actually lying down) and waiting and seeing. And attending frequent doctor’s appointments. And resting, and waiting.