Posted by Kimberly on March 21st, 2005 — Posted in Zen Baby, Oncology Odyssey
It’s been an up and down 24 hours.
We returned to hospital last night to await surgery this morning. At first, Zen Baby didn’t seem to harbour any ill-will towards the pajama-clad ladies, but then again, they remembered her and basically left us to ourselves to settle in for a few hours.
Then the saga of the iv started. First, the nurses in the Children’s wing (and by nurses, I mean 3 of them, plus me) attempted to draw blood from Zen Baby and reinsert her iv. No go on either count. So, in the interest of not traumatising the baby more than need be, we decided to wait awhile and ask the Nursery wing nurses to do it. Since Zen Baby wasn’t going to be allowed to eat after 12 am (and I’ll detail how I feel about that in a minute), and would definitely be wanting to nurse after her ordeal, I began asking around 10 pm when this show would get on the road.
So we brought Zen Baby to the nursery where the lovely nurses (again, 3) assured me that they would be ‘in and out; no problem”. Uh, no. After a 20 minute wrestling match, they did manage to draw enough blood for her blood work, but no iv.
The nurses then thought to leave it for the surgeons to do in the morning, assuring me she wouldn’t dehydrate after a few hours of being N.P.O. (hosptial speak for no food). Given we were looking at 10+ hours, I begged to differ. So they called the Dr to change her fasting time (which apparently, for a bf baby of her size, really only needs to be 5 hours ). But, it’s easier for him if every order is written for midnight; that way he doesn’t have to, oh, do his job and keep track, so he declined to make the change.
So, they went up a skill level and had the pediatric critical care nurses come to do her iv. I agreed only on the condition that they got one shot and one shot only. If it didn’t take, the Dr. was going to have to come up and work out another solution with a very pissed off and protective mommy. This time I demanded to nurse her while they did the stick, and it went ok.
But the poor little thing was poked in *every* major vein last night: both sides of her head, both hands, both elbows, and both feet. I want to sob just thinking about it.
So then came the fun job of not letting the co-sleeping, breastfed baby with the abnormally small stomach capacity not eat for 10 hours. Fortunately, Grampa came up to the hospital around 3 am and we spelled off–I would cuddle her until she demanded to nurse, then Grampa would take her away to settle her.
Then it was finally time for the surgery.
I have to say, they did not instill me with confidence this am.
First off, I had been told that I would be allowed to go into the OR with her until she was sedated, and that someone would orient me to OR procedure as a prequisite before hand. Despite waiting aound for over an hour on our discharge day, and periodically asking about it over a 2 hour period this am, that never happened. But you know what? They were clearly insane if they thought they were taking my baby anywhere without me. They did give in on that one, and I was gowned and present when they sedated Zen Baby. And despite the face mask, it was far less traumatic (for me, anyway) than any procedure thus far.
But they also forgot to send the order for her preop antibiotics to the pharmacy, so didn’t have them when the time came for administer them, thereby causing a small panic.
And they couldn’t figure out how to put one side of her crib down. Not exactly the display of competence you want to see before you hand your baby over for major surgery.
So Zen Baby is now undergoing her surgery and it will be at least 3 hours before I know anything. Hopefully, someone will update this tonight if only to give you guys a quick heads up as to how things have gone.
Please, more than ever today, keep those prayers and vibes coming. Because I’ll tell you a secret: For the first time in days, I’m really, really scared my baby might die.
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Posted by Kimberly on March 19th, 2005 — Posted in Oncology Odyssey
I can’t believe it’s Saturday already. Where did the time go? All this week I’ve been living in a space outside of “real” time, it seems. A kind of “Unday”. Really, all the days are the same, differentiated only by what test will be done today, and whether or not it will require sedation. Even when we’ve been home this week, the fact that it’s March Break just contributes to the unreal feeling of the days.
You know that feeling that descends after you’ve had a baby? That sense that there was a life before this, but you can’t really recall it clearly? That’s how I’ve felt this last week and a half. I know there was a life before the words “tumour” and “Zen Baby” were used in the same sentence, but it seems dreamlike to me. Everything’s been reorganized around this new reality.
I think that’s the answer to the people who say, “How do you do it? I don’t think I could.” You know what? I think you could. Sure, you never really know how you’ll react in a crisis until you’re there–and I sincerely hope none of you ever need to find out how you would cope. But here’s the thing I’ve learned: You do it because you do. There really isn’t any other option. Things are happening, and they have to be dealt with. You don’t really have time to break down; there are far too many things to take care of for that.
I’m not saying I’ve haven’t broken down in tears, forgotten how to breathe, or been so upset that I literally made myself sick, because I’ve done all that. But I’ve also held my daughter during “procedures,” joked with nurses, and freaked out the doctor’s more than once with my sanguine attitude–The test requires you inject a small amount of radioactive dye? So? What’s it going to do, give her cancer?
This has been (and continues to be) the most horrible experience of my life. But there are lessons to be learned here. And the first one is apparently that life is lived on a sliding scale. What was intolerable yesterday may just be ok tomorrow.
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Posted by Kimberly on March 18th, 2005 — Posted in The Ladies, Diva Girl, Zen Baby, Oncology Odyssey
I am so tired.
I didn’t even realize how tired I was until we came home from the hospital and I had a chance to just stop for a bit. Things at the hospital can be slow and boring, but like I’ve said before, it’s a tedium built on terror. Even when nothing is going on there, I’m always “on”. Being home has allowed me to stop, and it’s kicking my ass. I’d be in bed right now if not for the fact that the baby shows absolutely no signs of going down for the night and Diva Girl is only halfway through her 47th viewing of The Incredibles.
Yeah, apparently I have no problem with bribing my kids.
Diva Girl’s been thrown for a loop this past week. Sure, it’s been fun sleeping at Gramma’s and swimming with Anna Nancy, but it doesn’t change the basic fact that mommy left her. In her 6 year old mind, Mommy had to make a choice, and she didn’t choose her. And, at the most basic level, she’s right. I’d do it again in a heartbeat, and it really wasn’t much of a choice, but it doesn’t mean I don’t deeply regret hurting my big girl like that. So, when she reminded me (within 30 minutes of arriving home) that The Incredibles was out on dvd now, well….That was a no-brainer too. I’m just happy she doesn’t seem to know about Barbie Fairytopia
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Posted by Kimberly on March 17th, 2005 — Posted in Zen Baby, Oncology Odyssey
It has been soooo nice to be home. Well, my mom’s home, actually. But still, not the hospital. No beeping. No constant activity. No constant scrutiny. No hurry up and wait.
We’ve been setting our own schedule and doing things on our timetable. We’ve been avoiding people, because we can. We’ve been just chilling out, playing with toys and watching tv. I slept in a queen sized bed last night!!!! And I had a hot shower!!!! And there was one glorious hour where I didn’t share my space with anyone else. It really is the simple things that make life grand.
Zen Baby is enjoying being out of hospital, I think. Although our nurses are all lovely women, they are still the people who hold her down and do things to her. So she’s justifiably not too keen on them. So, much though I like them, I like not being around them even more.
Diva Girl is being 6. She was more worried that our return would mean an end to swimming and sleeping at the hotel than overjoyed with our return. And the inner accountant that lies deep in the heart of all children has been awakened and is tabulating the gifts to ensure proper parity. But I’m sure she missed us. Lord knows I missed her.
I have so much more to say, but I also have a 6 year old to snuggle, a one year old to nurse and parents to reassure. So maybe more later. And as always, thanks for the prayers, vibes, and kindnesses. I always appreciate your posts. May the universe bless you all in whatever way makes sense to you.
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Posted by Kimberly on March 16th, 2005 — Posted in Zen Baby, Oncology Odyssey
Just a quick update, because I need to clean up a little around here
We’re home until Sunday now. Another baby who is sicker than Zen Baby bumped our surgery slot, and I don’t begrudge it for a second. Things are looking really good for Zen Baby. If it’s what they now think it is, surgery should pretty much be the end of the drama.
Which is not to say that the surgery is no small thing. It’ll be major abdominal surgery under general anaesthesia. They’ll put a tube down her throat to breathe for her, the incision will be “stem to stern” and the procedure will take about 3 hours. So, still scary days ahead.
But I’m feeling less like it’s the force of my will that’s keeping her alive, so that’s a good thing. We’re in a good place, emotionally. It’s also a fragile place, but I can deal with that. And it’s great to be home! (well, aside from the laundry. And the dishes. And the all around mess!)
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Posted by Kimberly on March 15th, 2005 — Posted in Zen Baby, Oncology Odyssey
Quick update because Zen Baby has awoken from the MRI and boy, is she stinky.
Zen Baby will be having surgery this Thursday.
So far it looks like her tumour is just a big bully that’s pushing all the other organs around. So the surgeon is going to take it to the time-out chair. And if all goes really, really well….after a week of post-op recovery we will blow this popsicle stand without a backward glance!
So keep your fingers crossed.
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Posted by Kimberly on March 15th, 2005 — Posted in Zen Baby, Oncology Odyssey
Yesterday was difficult.
There was some mix-up with Zen Baby’s testing schedule that led to them not allowing her to eat for over 9 hours. Yeah. Let’s keep the freaked out, breastfed 12 month old from nursing, at all, for an entire day. Because baby and mama won’t mind that scenario at all.
I was not impressed. But Grampa was a saint. I had been told not to feed her after 4:30 am so that she’d be ready to go bright and early. For a test that I’d been told Friday would be occuring, but that no one actually bothered to schedule. (Did I mention I was a bit annoyed?).
Anyway, by 9 am Zen Baby was a little, shall we say, less than zen. So I called my parents and my dad immediately came up and became her primary caregiver until they finally sedated her at 1:30. He was wonderful. Soothing, comforting, walking the halls and everywhere. I am so grateful and lucky that he’s my dad and her Grampa.
He did the same thing today for the test that should’ve been done yesterday even though it was only going to be a couple of ugly hours for us. So blessed.
And keep those prayers, vibes, etc. coming, because there could be good news. Zen Baby’s illness may not be as bad as originally thought. This testing, though annoying and stressful, has revealed new options for diagnosis. There’s a possibility that the type of tumour she has is so incredibly rare that the entire medical staff had to go back to the books to learn about it. And if it is that kind, her presentation makes it even more rare still.
Which sounds scary. Except that it’s 100% curable. So we want it to be that. Pray for that.
It’s really boring here. But it’s a tedium built on terror. So in some ways, boring is good. Boring is *much* better than beeping. But, boring is also still boring, and I don’t do well with boring. And Zen Baby is still healthy enough that neither does she.
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Posted by Kimberly on March 14th, 2005 — Posted in Diva Girl, Oncology Odyssey
This week should be good–Sabrina’s favourite (ie most spoiling) Aunt has come to town to make it all about her. So she has a new bikini and free access to the hotel pool.
She’s a little girl in heaven right now. (gosh, *that* sounded morbid, given the context, didn’t it ).
But that reminds me to send a big group thank you to everyone who stepped up to say, “Hey, what about Diva Girl?” I appreciate your willingness to take on my very energetic older daughter sight unseen just because you’re such good people.
Again, I am truly blessed with the people in my life.
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Posted by Kimberly on March 13th, 2005 — Posted in Zen Baby, Oncology Odyssey
Hi everybody. I hope you all had a great weekend filled with love and family. We did. We were AWOL again today, and Zen Baby had a fabulous time being spoiled by aunts and uncles and playing with her many, many cousins. Crawling around with toys at Gramma’s house has been a nice break from the hospital.
Zen Baby was also baptized today. Not because I panicked and thought “I have to baptize her before something goes wrong!!!!!” There’s a long saga of my trying to arrange this event since last August, and something always coming up. And she was scheduled to be baptized in April, but we’ll probably be a little busy then. So our priest generously bent the rules and we had a lovely, private ceremony with just close family and friends. So Zen Baby is all set with God for the forseeable future.
And speaking of God, a lot of people on this journey have asked about praying for our family. So I’ll let you know my feelings on the issue: No on needs to ask my permission to send positive vibes about my daughters out into the universe. My personal construction is based on the fact that I worship in the Catholic Faith, but I’m not fussy. I’ll take whatever support you guys want to send me. So absolutely keep us in your prayers, and thank you for doing so.
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Posted by Kimberly on March 12th, 2005 — Posted in Zen Baby, Oncology Odyssey
The panic is over.
Zen Baby came through the C-T scan ok.
Our Nurse is so wonderful that rather than wait around in the break room until it was time to bring her back, she gowned up and held Zen Baby’s hand through it all. I cannot say enough good things about the nurses at CHWO. Wow. Those are some amazingly strong, compassionate women. I am in awe.
Zen Baby’s completely recovered from the testing drama (and I’m on the way). We’re AWOL right now, actually. (Absent With Oncologist’s Leave). They won’t be doing anything to her in the next couple of days, so there’s no reason for us to be there. Except that there’s that pesky bed shortage. So we’re sleeping there, and out on a “day pass”. Gosh, that makes me sound like a mental patient. Well, if the shoe fits, I guess.
Good thing we’re out, ‘cuz everything hit the fan on laundry day, among other things. So I’m home gathering up Diva Girl’s underwear to take to Gramma’s house. And hey, there’s a silver lining! Gramma will have to do the laundry! Of course, those breaksfast dishes I left in the sink are my responsibility. Ick.
I may update later. Just wanted to keep everyone informed and say thanks and keep those support messages coming. I kinda don’t care if you think, “Jeez, how many times can I say “I’m here for you” without her thinking I sound like a weenie?” Because the answer lies somewhere past infinity. It always gives me a lift to check here and see that someone has left a message. (gosh, now I sound like a prime candidate for Munchausen by Proxy!).
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