A weekend in the surreal.
I got back this weekend from a flying visit with a dual purpose--to see my sister (Saz) and her baby-still-on-the-inside, and to see my friend (Kay) and her baby on the outside. Which doesn't sound all that surreal just put like that, does it? Trust me--it was.
Saz and her husband are having their first baby, due December 18, which makes her 35 weeks pregnant right now. I haven't seen her since August, because we've all been sick for most of September, October, and early November, so I badly wanted to go and see her before the weather got bad, and before the baby appeared on the outside.
Kay and her husband were also having their first baby, due December 17. The difference is that their baby decided that she did not want to be a Christmas baby after all, and showed up at 27 weeks and 2.5 pounds.
The whole weekend, I felt like I was in a very weird and contradictory world. I spent Saturday with my sister, watching her walk through her back garden with her hand constantly coming up to rub at her belly, this cute little smile on her face every time she felt the baby kicking. We talked about the five or so weeks she's still got to go before her baby should make its appearance out here in the world... about how the last few months since I've seen her have gone. We built dressers, and folded clothes, and picked up cribs. We wondered whether she was having a boy or girl, and just how much bigger her baby tummy was going to get.
Sunday afternoon, I went to the hospital to see Kay and Rose. It was my first time going to a NICU, and she's still in the Critical Care section. The parents have lockers to put their things, since most of them are there for the majority of the day. They come from all over the province, and only the babies in need of the most intense level of care are in this nursery.
When you arrive, you have to take off any jewelry you're wearing on your hands and wrists and put it away. You roll up your sleeves, and scrub your hands and arms up to the elbows. There's a whole wall of sinks with automatic dispensers so you don't reinfect your hands after you've washed them by touching something dirty. When you're done, you go through two sets of doors before you're in the Critical Care NICU.
It's smaller than I thought it would be, and it's loud. There are machines all over, bright lights. Beeping noises from the machines go off constantly. There's no peace in this room, no quiet. The tiny cribs and bassinets each have their own little section, but there aren't any walls between them, just the crib or bassinet separating each baby from the next. Some group who support the NICU have made these quilted drapes that go over each bassinet or crib to block the light from it, so the babies can rest and the lights and sounds can be muffled a little.
Kay sits there beside her daughter's crib all day, goes home for dinner, and comes back again at night with her husband. Some days, if it's a bad day, she can't even touch her daughter. It's too much stimulation for a little body that's not ready to be on the outside yet. But some days, she's allowed to hold her, to tuck her in right against her chest and close her eyes and pretend, maybe just for a few moments, that she's like a regular mom, with a regular baby. Just curling up in a chair and having a cuddle.
But the reality is that Rose is still having to battle very hard, and it's going to be a long time before she gets to come home. When she does, it's unlikely that she'll be coming home without needing a lot of continuing medical care and therapy.
It's her lungs. As Kay puts it, she's talked to Rose and told her that she can be bad at anything else. She can be a bad cook, she can be bad at math, she can be bad at sports. But she can't be bad at breathing. This is one of those one things that she just has to learn how to do. Must learn how to do. And at this point, even though everything else is going amazingly well, her lungs just aren't cooperating and doing the job they're supposed to.
Typically, without complications, a prem baby goes home around about their due date, plus or minus a few days or weeks. Because Rose has already been on the ventilator as long as she has, and because her lungs are still so weak and doing so badly, that won't happen. They're crushed, but they're preparing themselves for her first Christmas to be spent in the NICU. If they're very lucky, she'll come home sometime in the New Year, January or early February.
And that's the 'if all goes well'. They've had some dark and serious talks with the doctors and respiratory therapists. They believe that they can help Rose, and they're moving forward expecting that her lungs will grow and heal themselves, and that she'll be able to go home like a normal little girl. That a few years from now, it'll be like none of this ever happened. But there is a worst case scenario that's still a lot more likely than anyone would like it to be, and it's something they've had to talk about. And between that worst case scenario of not getting better, and being perfectly fine, there's a whole grey area that they don't even know how to predict.
So they go forward. Kay goes to that hospital, every day, and she sits in the chair beside her daughter's crib, and she talks about home. She tells her what a good cook Mommy is, and how funny Daddy is, and how cool her stroller is. How she's got cats at home who can't wait to meet her, and family and friends who can't wait to be able to hold her. But we're on Rose-time. She was born at her own pace, she's growing at her own pace, she will heal at her own pace, and she'll start breathing without the vent and come home when she's ready, and not a moment before. Honestly, stubborn as she is, she's a lot like her mother.
So I have this day in the NICU, a few hours of watching this tiny little scrap of a girl, who's twice her birth weight now, which puts her just under the size that my twins were when they were born--and I thought they were tiny. Watching her chest rise and fall, and knowing that it's a machine doing it for her, because she's just not ready to do it herself. Watching her face screw up and her mouth open, and knowing that she's crying, but she can't get any sound out because there's a tube in her throat.
And she's beautiful. She's tiny, and she's got such a fight still ahead of her. And she's got her daddy's lips, and her mommy's nose, and she's had to deal with more things in her two months of life on the outside than most people will deal with in their lifetime. And she's not done yet.
Kay refers to it as watching the third trimester happen on the outside, and I think that's pretty accurate. And that's where the surreal part comes in, because I'm looking at this little girl, this baby whose due date is one day behind my sister's baby's due date, and I know already that my sister's baby is bigger and stronger and more ready to be on the outside than this little one who's technically two months old (I'm not getting into corrected ages and all that prem stuff--it'll make your head hurt. It still makes my head hurt and we had to do it with the aliens). My sister still has over a month to go, and Rose has been here, out in the world, a world that she's not ready to be in, for two months already.
It's hard for Saz and Kay both. Saz can't help but feel guilty and a little scared as she looks at the pictures of Rose, her hand smoothing over her stomach like she's subconsciously trying to soothe or protect the little one she's got on the inside. She can't help being grateful that it's not her and her husband and their child who are battling it out in the NICU right now. (Which then wraps back around to guilt again). And Kay wants to be happy for my sister, with her ridiculously textbook perfect pregnancy, but she can't help wishing that she'd gotten the cookie cutter pregnancy. Can't help resenting that she didn't get it, particularly when there's such an obvious example of someone else who did. And then she feels guilty for feeling that way.
They both just wanted a baby. They both read all the books and did all the things the doctors tell you to. They did exactly what you're supposed to do in order to have that perfect, healthy, 40 week old baby show up all, well, perfect and healthy. But fate's a fickle beast, and life doesn't always go like we want it to.
The next month is a big one for both Kay and Saz, and their little people. If everything goes well, in the next few weeks/month, they'll be working on weaning Rose off the ventilator and getting her onto a CPAP machine. It's the first big step to get her out of the Critical Care NICU, and into the Intermediate Care room. A big step, and one they badly want to take. In the next month, give or take a few weeks, my sister's going to find out whether the baby that kept kicking whenever Auntie Jay was talking (seriously, every single time I was talking, my sister was getting whumped from the inside out) is a boy or a girl. And if all goes well, it'll all go well, and baby and mama will be healthy and fine.
So for the next few weeks, I'd truly appreciate any good thoughts, prayers, anything you've got for Saz, Kay, the baby on the outside, and the baby on the inside. They're very much appreciated, and very much needed.
Thank you. All of you.
Saz and her husband are having their first baby, due December 18, which makes her 35 weeks pregnant right now. I haven't seen her since August, because we've all been sick for most of September, October, and early November, so I badly wanted to go and see her before the weather got bad, and before the baby appeared on the outside.
Kay and her husband were also having their first baby, due December 17. The difference is that their baby decided that she did not want to be a Christmas baby after all, and showed up at 27 weeks and 2.5 pounds.
The whole weekend, I felt like I was in a very weird and contradictory world. I spent Saturday with my sister, watching her walk through her back garden with her hand constantly coming up to rub at her belly, this cute little smile on her face every time she felt the baby kicking. We talked about the five or so weeks she's still got to go before her baby should make its appearance out here in the world... about how the last few months since I've seen her have gone. We built dressers, and folded clothes, and picked up cribs. We wondered whether she was having a boy or girl, and just how much bigger her baby tummy was going to get.
Sunday afternoon, I went to the hospital to see Kay and Rose. It was my first time going to a NICU, and she's still in the Critical Care section. The parents have lockers to put their things, since most of them are there for the majority of the day. They come from all over the province, and only the babies in need of the most intense level of care are in this nursery.
When you arrive, you have to take off any jewelry you're wearing on your hands and wrists and put it away. You roll up your sleeves, and scrub your hands and arms up to the elbows. There's a whole wall of sinks with automatic dispensers so you don't reinfect your hands after you've washed them by touching something dirty. When you're done, you go through two sets of doors before you're in the Critical Care NICU.
It's smaller than I thought it would be, and it's loud. There are machines all over, bright lights. Beeping noises from the machines go off constantly. There's no peace in this room, no quiet. The tiny cribs and bassinets each have their own little section, but there aren't any walls between them, just the crib or bassinet separating each baby from the next. Some group who support the NICU have made these quilted drapes that go over each bassinet or crib to block the light from it, so the babies can rest and the lights and sounds can be muffled a little.
Kay sits there beside her daughter's crib all day, goes home for dinner, and comes back again at night with her husband. Some days, if it's a bad day, she can't even touch her daughter. It's too much stimulation for a little body that's not ready to be on the outside yet. But some days, she's allowed to hold her, to tuck her in right against her chest and close her eyes and pretend, maybe just for a few moments, that she's like a regular mom, with a regular baby. Just curling up in a chair and having a cuddle.
But the reality is that Rose is still having to battle very hard, and it's going to be a long time before she gets to come home. When she does, it's unlikely that she'll be coming home without needing a lot of continuing medical care and therapy.
It's her lungs. As Kay puts it, she's talked to Rose and told her that she can be bad at anything else. She can be a bad cook, she can be bad at math, she can be bad at sports. But she can't be bad at breathing. This is one of those one things that she just has to learn how to do. Must learn how to do. And at this point, even though everything else is going amazingly well, her lungs just aren't cooperating and doing the job they're supposed to.
Typically, without complications, a prem baby goes home around about their due date, plus or minus a few days or weeks. Because Rose has already been on the ventilator as long as she has, and because her lungs are still so weak and doing so badly, that won't happen. They're crushed, but they're preparing themselves for her first Christmas to be spent in the NICU. If they're very lucky, she'll come home sometime in the New Year, January or early February.
And that's the 'if all goes well'. They've had some dark and serious talks with the doctors and respiratory therapists. They believe that they can help Rose, and they're moving forward expecting that her lungs will grow and heal themselves, and that she'll be able to go home like a normal little girl. That a few years from now, it'll be like none of this ever happened. But there is a worst case scenario that's still a lot more likely than anyone would like it to be, and it's something they've had to talk about. And between that worst case scenario of not getting better, and being perfectly fine, there's a whole grey area that they don't even know how to predict.
So they go forward. Kay goes to that hospital, every day, and she sits in the chair beside her daughter's crib, and she talks about home. She tells her what a good cook Mommy is, and how funny Daddy is, and how cool her stroller is. How she's got cats at home who can't wait to meet her, and family and friends who can't wait to be able to hold her. But we're on Rose-time. She was born at her own pace, she's growing at her own pace, she will heal at her own pace, and she'll start breathing without the vent and come home when she's ready, and not a moment before. Honestly, stubborn as she is, she's a lot like her mother.
So I have this day in the NICU, a few hours of watching this tiny little scrap of a girl, who's twice her birth weight now, which puts her just under the size that my twins were when they were born--and I thought they were tiny. Watching her chest rise and fall, and knowing that it's a machine doing it for her, because she's just not ready to do it herself. Watching her face screw up and her mouth open, and knowing that she's crying, but she can't get any sound out because there's a tube in her throat.
And she's beautiful. She's tiny, and she's got such a fight still ahead of her. And she's got her daddy's lips, and her mommy's nose, and she's had to deal with more things in her two months of life on the outside than most people will deal with in their lifetime. And she's not done yet.
Kay refers to it as watching the third trimester happen on the outside, and I think that's pretty accurate. And that's where the surreal part comes in, because I'm looking at this little girl, this baby whose due date is one day behind my sister's baby's due date, and I know already that my sister's baby is bigger and stronger and more ready to be on the outside than this little one who's technically two months old (I'm not getting into corrected ages and all that prem stuff--it'll make your head hurt. It still makes my head hurt and we had to do it with the aliens). My sister still has over a month to go, and Rose has been here, out in the world, a world that she's not ready to be in, for two months already.
It's hard for Saz and Kay both. Saz can't help but feel guilty and a little scared as she looks at the pictures of Rose, her hand smoothing over her stomach like she's subconsciously trying to soothe or protect the little one she's got on the inside. She can't help being grateful that it's not her and her husband and their child who are battling it out in the NICU right now. (Which then wraps back around to guilt again). And Kay wants to be happy for my sister, with her ridiculously textbook perfect pregnancy, but she can't help wishing that she'd gotten the cookie cutter pregnancy. Can't help resenting that she didn't get it, particularly when there's such an obvious example of someone else who did. And then she feels guilty for feeling that way.
They both just wanted a baby. They both read all the books and did all the things the doctors tell you to. They did exactly what you're supposed to do in order to have that perfect, healthy, 40 week old baby show up all, well, perfect and healthy. But fate's a fickle beast, and life doesn't always go like we want it to.
The next month is a big one for both Kay and Saz, and their little people. If everything goes well, in the next few weeks/month, they'll be working on weaning Rose off the ventilator and getting her onto a CPAP machine. It's the first big step to get her out of the Critical Care NICU, and into the Intermediate Care room. A big step, and one they badly want to take. In the next month, give or take a few weeks, my sister's going to find out whether the baby that kept kicking whenever Auntie Jay was talking (seriously, every single time I was talking, my sister was getting whumped from the inside out) is a boy or a girl. And if all goes well, it'll all go well, and baby and mama will be healthy and fine.
So for the next few weeks, I'd truly appreciate any good thoughts, prayers, anything you've got for Saz, Kay, the baby on the outside, and the baby on the inside. They're very much appreciated, and very much needed.
Thank you. All of you.