Thursday, April 28, 2011

Hospital, Part 3: Tuesday & Wednesday

Current status: Thursday afternoon (trying to get a little caught up here, but we'll see). In short, regular OB wants to watch a couple days to be sure things are stable, and then send me home on bedrest...high risk does not agree. We are re-running labs tomorrow, and there will be more discussion. They're bumping my meds up a dose - it's so close to being right, but if they're off by even a half hour (which happens a lot on this unit) and check pressures before meds are given, it's high - high enough that I'm a bit sketchy about heading home on that tight of a schdule, though I've managed it before.

Acorn's scope got moved to next week, at his doctor's request. Complicated timing much?


Tuesday was much the same as Monday - the magnesium had to run through it's 24 hour cycle, which ended late morning. Then I could eat (which helped a lot).

We went down to ultrasound to check on Leaf - Leaf is as big now (24 weeks) as Acorn was at birth (27 weeks) - a good sign, to be sure. No IUGR here; this is promising too. It means there's no compromise to the the placenta or umbilical cord at this point.

The urine collection needed to run out too, so they left the catheter in until late afternooon. They let me off the round the clock fetal monitoring. They turned off the IV and put in a hep lock (which I'm notorious for killing).

Then I moved to ante-partum.

It's different here. Tiny (but private) rooms. Bathroom privileges (I hate that term - just makes the whole place feel more like a jail). "Real" beds (hospital beds) rather than labor stretchers, which makes for better sleep - though my lower back isn't thrilled with any of them. They have a pantry, like other floors, but the nurses control it so they're never out of anything. The nursing assistants will happily bring snacks, drinks, or anything else really, anytime you ask. It's mostly amazingly quiet. When dietary brings my tray, they ask for my bracelet to make sure I'm me.

Time somewhat blends together here - one day is much like the next. It's very busy from 9-11 pm and from 6-7:30 am, and other than that, I see people every few hours -  BP checks, meds, food. Fetal monitoring twice a day. BP  every 4-ish hours from 6 am to midnight. BP meds every 8 hours, plus regular meds twice a day. Meals at 7:15, noon, and 5. Bad cable TV - nothing interesting at all.

Speaking of food, I find that I'm terribly hungry, even though I'm not doing much. I suspect part of this is making up for Monday's drama, and replenishing needed nutrients (and flushing crap out at the same time), and part is that Leaf really is growing like a weed, and needs these calories. Meals here aren't bad, mostly - there are choices, and I can usually find stuff worth eating between the standard choices for the day's meals and the "any meal any day" stuff that we can always ask for as part of a meal.

Wednesday afternoon's highlight was another trip to ultrasound, where all the techs were baffled, because I'd just been there the day before. Finally they paged the doctor who'd sent me, and discovered what he wanted - a biophyisical profile (BPP), which is an 8 point test where they check fluid, practice breaths, limb movements, and larger body movements, looking for specific numbers of movements in 20 minutes.

Leaf is pretty young for this test - particularly for the breaths. In fact, we were told Acorn likely wouldn't do well on the test at 26+ weeks...but Acorn passed as long as I'd eaten before the test, and Leaf passed the first test in under 5 minutes. Have I mentioned before that Leaf is feisty and laughs at ultrasound techs? yeah....

So anyway. Still in limbo. Still pregnant, though, which is good.

Hospital Part 2 - Questions a Parent Should Never Face

It's funny how time changes things. How experience and perspective matter. How much difference it is coming into a situation with knowledge rather than with fear.

Not that there isn't fear, when it comes to Leaf and this pregnancy. But that the NICU experience isn't some unknown fear. It's a known, defined thing. We know the risks. We've seen the risks first hand. We know that Leaf needs more time - 24 weeks is survivable, yes...but each day, each week longer means fewer problems and less therapy and less intervention when we come out the other side. We've done 27 weeks with severe breathing issues, and I'd give almost anything to make it to 30 weeks this time.

Even knowing that Leaf is now the size Acorn was at birth....we need those extra weeks.

We'd already been asked standard questions by the first round of nurses and residents: planning to breastfeed? you had a c-section, were you planning that again? etc etc etc. Not that this hospital is known for being VBAC friendly, but my OB has thus far been on the side of at least giving it a go...he's actually the one who suggested trying for a vaginal birth with Acorn, even as early as he was, because it would be better for both of us, recovery wise.

At any rate, they sent a neonatologist down Monday afternoon. Things were bad enough that there was a small possibility that Leaf would need to be born right away, and they needed to be in on the discussion. They sent Dr R - we don't know her all that well, but we remembered her as the lovely young Muslim woman they hired after Acorn got his trach.

She was not one of his primary docs - by then we had the head of the department and the doc who'd done his admission covering his care, and the team working sort-of together to make big decisions. But Dr R was on duty the night Acorn's brand new g-tube button came out, only 36 hours after it'd been put in (he'd had a PEG tube before that), and could not be re-inserted.  We hated that night's nurse, but Dr R and the nurse practitioner worked together and saved Acorn's stoma, and got the button back in, even with the fairly useless surgical resident's helplessness, without having to send Acorn to the OR yet again.

Dr R said that we looked familiar and that our names were familiar; she knew that our previous birth was a 27 weeker with a trach. It took some talking about things, but then she placed Acorn's case in her mind. She said that the standard cut-off for viability is 24 weeks (which we hit Tuesday) - but that they take cases earlier than that based on how the baby is doing. Babies who are immature for their age are less likely to do well long term, for example, so there is less of a push to resuscitate at that point.

Nurse M tells me they have a special program now for 25 weeks and earlier, and that there's some research going into better outcomes for the really early ones, but she's not thrilled with the way some of it is being handled. As I mentioned in a previous post, she suggests a full term delivery, or as close to it as possible - duh!

Anyway....Dr R said that clearly, we're going into a possible early delivery with more knowledge and experience than most families she talks to, and wanted to know what our thoughts were. I guess we gave her kind of blank looks...because after a brief pause she said, "you know what this is like; if there's any question about your baby making it, do you want us to resuscitate or not? Do you want to fight for this baby?"


I hate to be so flip about it, but DUH! Of course we do. Sure, we'd really prefer to need to fight less than we've fought for Acorn...but to not fight at all? To have come so far just to walk away?

Not something I can do. Not here, not now, not after all this.

And not a question I ever want to have to answer again.

Wednesday, April 27, 2011

Hospital Stay, Part 1: Monday

Gah. This is going to be long, no matter what I do. I guess it's going to be in parts, because it's taking time to process the odd mix of things going on. The current status, here on Wednesday afternoon, is that Leaf is doing really well, and my BP is under control with meds, and we're waiting to see whether or not it stays that way. No pre-ecclampsia yet, just pregnancy induced hypertension.

Monday morning was my regularly scheduled MFM (maternal-fetal medicine, or high risk OB) appointment. I've seen them every 4 weeks since January, and my regular OB in between each of those appointments since late December - so, in short, I've seen some sort of OB every 2 weeks since I was about 6 weeks pregnant, so this appointment, 1 day short of 24 weeks, was not out of the ordinary.

Less than 2 weeks ago, my blood pressure was 114/72 at the endocrinologist's office. There was no reason to check in between - sure, I'd had a bit of swelling of my feet & ankles but my shoes still fit, and my rings still fit on my fingers, so it wasn't that bad...especially since swelling came up in every pregnancy tracker in the last week or two as well.

At any rate, my BP at the doctors' office Monday was running 180s over 100s.

Not good. Really not good. Like, "might fall over dead and stroke out" not good.

Thing is, I felt fine. Which sucks, because the things they do to bring down blood pressure that high? They make you feel awful.

I went straight to labor and delivery from the doctors' office - they actually wheeled me across the hospital in a wheel chair. Immediately, BPs were checked (and were worse), an IV went in, blood work was drawn, monitors went on the baby, and meds started running to try and bring things down.

I called my husband at that point to come home - I was willing to wait it out and see what was going to happen, but at that point, I knew that this was not good, and that I was going to be here a while.

For what it's worth, I remember how magnesium felt when I had it with Acorn. It still sucks. And not being allowed out of bed is horrible. And foley catheters suck. And not eating for a whole day just makes things really surreal.

After magnesium was started, and several rounds of various IV meds were given,  things were looking better, but my heart rate and Leaf's were close enough to the same that figuring out which of us was on the fetal monitor was a challenge, so they decided to switch BP meds to something that we know causes me to have headaches, but would improve everything else. Worst case, they could always give good drugs if the headache got too bad.

Sure enough, that first oral dose brought things down to "too low" (and caused horrific vomiting, and a headache), but we were now on the right track. High risk OBs came in to discuss, and suggested that if we could get things stable....I might be able to go home and wait things out there with extra monitoring.

And then they had the NICU send someone down, which will be the topic of the next post on this subject.

Monday night was little sleep, and uncomfortable, but we made it through.

I want to thank nurse M, one of our NICU favorites from Acorn's stay, who, when she saw us pop up on the NICU boards as a potential admit, said a string of cuss words and then came to hang out for an hour or so after her shift, both Monday and Tuesday - no repeat offenders, keep that baby cooking, she says. That, and if we make it to even 30 weeks, we'll be so much better off than with Acorn. She warns, however, that if I'm on magnesium when I deliver, even a nearly full term baby will likely spend a few days on a ventilator.

And I want to thank R, a friend from a local crunchy parenting board, and a Goddess-sister of mine, for coming to sit with me Monday while my husband went home to sit with Acorn between day nurse leaving and K getting out here to keep him until night nurse arrived.

Their support made Monday a lot less stressful than it could have been.

Interview, part one

As I mentioned earlier, Masery Gaias of the Staff of Asclepius blog is doing a several part interview with me. Part one, "Struggling with the May Pole" went up Tuesday.

I would have mentioned it then, but I was busy being in the hospital - updates  on that coming soon, in pieces, because it's long :)

Tuesday, April 26, 2011

a quick update

There are a lot of things to say about the past 36 hours, but they'll have to wait until I'm not typing on my phone.

In short though, baby is fine, growing like a weed, and still cooking. My blood pressure went scary high yesterday, so i'm in the hospital to get things situated. We are ok - pressures much better on new meds.

But there are questions a parent should never have to answer, and that part of this sucks more than anything else I've been through here in the last day and a half.

More when there is time.
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Thursday, April 21, 2011

It's complicated....

23 weeks, 2 days. A few little easily controlled glitches, but other than that, Leaf seems to be doing just fine, kicking and squirming to hir heart's content here in my belly. Kicking hard enough that if you're lucky, and in just the right spot, you can feel those kicks from the oustide now.

You know, with Acorn, I think my husband only felt one or two kicks...

By 22 1/2 weeks, Acorn and I were already in trouble, though we didn't know it yet, since my blood pressure was barely controlled with meds (the same medication I'm on right now, with a normal blood pressure most of the time).

With Acorn, I was admitted to labor & delivery "for the duration" at 26 weeks, 2 days - and that duration ended up being less than a week.

It's a complicated feeling, being here in this sort of no-man's-land between when things went badly with Acorn and when he was born, in this completely different pregnancy with a completely different child, under the care of more doctors than I can count on one hand.....

It's terrifying, really. And a relief - and yet there's guilt about that feeling of relief too. And a lot of time spent wishing we could just do one single thing the easy way here- the way normal people do.

Wednesday, April 20, 2011

National Infertility Awareness Week

I wasn't sure I was going to post on infertility or not this week. It's a tough subject for me, and I'm finding myself in an odd spot, emotionally speaking, right now.

This year, the topic is mythbusting: what myth about infertility isn't true? And I think my myth to bust is that once you have a child, your infertility journey is behind you - that it's no longer painful, and that you're no longer infertile.


Sitting with Acorn getting him wound down for bed last night, I was reminded of how blessed we are. Where did this amazingly cute, funny, stubborn, happy little boy come from? Five years of trying to get pregnant, followed by the last 3 years of medical drama, and yet here we are, with Acorn thriving, and Leaf on the way, and apparently thriving as well.

As I mentioned last year, having a baby doesn't undo the past though - doesn't change that infertility label. Just as Acorn coming home didn't make him magically into a kid who'd never seen the inside of the NICU, and just as having his trach out won't make him have never had it, infertility is something you carry with you forever.

Having a baby (or even 2) doesn't change the emotional strain. It doesn't change the immediate reaction to some of the dumb things people say. It doesn't eliminate the gut reaction to some situations that makes you think, "wait, so people like that just happen to get pregnant and treat their kids like yesterday's garbage, but we had to go through all this?" It doesn't change the worry about whether or not you might have another child - no matter how many children you have, the question of whether there will be another, and what you'll have to do to create that child will always be in the back of your mind.

Having a child makes baby showers a little easier - but not much. I've skipped 3 in the last 3 years because I just can't do it.

Having a baby means instead of bleeding to death from a thousand cuts, I've got some painful scars, a lot of healing cuts that get ripped open again from time to time, and a few gaping wounds still to be patched up. It still hurts like hell though,


RESOLVE offers this page for basic understanding of infertility:

National Infertility Awareness Week® (NIAW):

Monday, April 18, 2011

recent vignettes

2:30 am, Acorn's room: Acorn's bed is comfortable, but I'm having a hard time finding anywhere comfy to sleep lately. It goes with being pregnant, I suppose. Acorn is mostly sleeping, and even though the oxygen is running and he's wearing an HME, I feel his breath on my cheek, from his nose. Some day, I'm sure this will seem completely normal, but right now it still catches me off guard.

11:00 am, PICU: We are the only room that doesn't have alarms going off every few minutes. Acorn jabbers away - we're sure he's trying to say something, but his articulation just isn't there. He's unfazed by the wires and tubes, other than being unhappy that there's an IV in his foot, which means keeping him in the bed, rather than running around the room. Clearly, he's not sick enough for the PICU - and if he's not sick enough for them, he's probably well enough to go home, all things considered.

3:00 pm, consuite in a random hotel: Overheard as I chase Acorn through the room (he really wants to play on the fire stairs), "Hey, look! He's without a tether! That's awesome!" Last year, same con, different hotel, his oxygen tube was arranged to help keep him from running off - what a difference a year makes. The con itself has changed too - last year we had several people comment on how bad an idea it was to bring a child to "a place like this" (never mind the medical risks, they felt the topic and personalities to be inappropriate)...this year there were 2 younger babies, and at least 4 kids older than Acorn, but under the age of 12.

Saturday, April 9, 2011

in some ways this medically fragile parenting thing is nothing like regular parenting

I slept in the PICU with Acorn last night. As close as we are to being long as it's been since he's been in-patient in a hospital (15 months)...I thought we were done with this sort of thing. We'd made it almost half his life without an admission.

I posted on twitter last night:  why is it that friends with normal kids freak when in hosp, but have no sympathy for us when we are?

I've been thinking about that a lot today. The thought was prompted by the response on a local parenting board to my post that we were in the hospital. Most of the responses were sort of generic - lots of hugs and "I'm sorry" sorts of statements. A few months back, someone else on the list had a similar sort of post...but they'd never actually had their child in the hospital before. They had people bringing them dinner for a week after they came home. There have been others, too, where the response was gushing, a combination of horror and empathy and insistence that things will be ok. 

Even on facebook, a few high school friends state that having a child in the hospital is the worst thing ever...but really, it's not. There are far worse things in life.

Talking with my husband, he points out that for us, this isn't the worst thing that's ever happened. We're very comfortable in the hospital, even more than a year since our last stay - we've practically lived there for months on end, we know how to operate all the monitors and equipment, we know enough to make nurses uncomfortable at times.

He suggests that maybe it would drive more sympathy if my statements were less matter of fact.

But this is our life. It is what it is, and I cannot pretend that it's something it's not.

It's no wonder, then, that so many families with children with special needs struggle, if so many of our neighbors, friends, and coworkers think that our lives aren't worth basic sympathy and courtesy because we're used to dealing with so many crazy things.

Tuesday, April 5, 2011

Little updates

Still lost in my own head. If you find me, send me home, and tell me to wait until I get back, ok?


Friday was interesting, Leaf-wise. Friday morning the top of my uterus (the fundus, as doctors call it) was at the bottom of my belly button (apologies to @kysilka - she has belly button issues, and may want to skip to the next paragraph). I remember being so happy to have finally reached that point with Acorn...and then not really getting much farther. Friday after lunch, Leaf moved...and suddenly (and rather uncomfortably) I had a head poking me *above* and to the side of my belly button. I thought this growth thing was supposed to be gradual?

I'm also rather glad Arwyn (@RaisingMyBoychick) posted a while back on being Fat and Pregnant - it's made me more aware of my belly than I was with Acorn, and has made some things make far more sense than they did. See, I have this roll of fat, right above my belly button. And when I was pregnant with Acorn, I kept waiting for the baby part of my belly to "catch up" so that I actually looked pregnant, not just fat... and what I'm realizing this time is that as Leaf has grown, although my lower belly isn't sticking out all that much more than it did before pregnancy (though, clearly, it *is* different, else I wouldn't be wearing maternity pants with their lack of pockets) is pushing things *up* and out of the way, and that roll of fat at the top actually sticks out more than it did before, because other internal bits are now taking up space there, which just makes it look like the lower part of my belly isn't changing. Tricky, tricky. I do actually have pics, but they're too dark to share without some photoshop The Gimp work on them, so maybe in a few days.


Acorn is babbling up a storm, and he's loud. Really loud. He's trying to say actual words. It's exciting, really, but a bit surreal (like so many other things in our lives right now) to wake up to the sound of him saying gogoGoGoGOGOGOGOGO from across the hall.

His physical therapist wants to discharge him for a bit (and she's not really all that stellar with him), and we're talking about going ahead and doing that for now. A break might be nice. He's sort of got the idea of pedaling a trike this week (which is one of the things we're concerned about him being behind on), and he's still not jumping, but is starting to get the idea on a trampoline.

We're talking about taking a break from seeing the psychologist too. Acorn has met all of our original goals from when we started last summer. We've gotten his decan switched to a hospital where we can better manage his experience, and thus his anxiety. He's not having nightmares and night terrors anymore, and he willingly goes to sleep most nights. We can get through doctors appointments without him throwing up or passing out. These are all good things.


This nanny search thing is complicated. We had a couple of good options, but one of them found a position before I could even get a response from her. I still have more to read through as well. So I guess we keep plugging away at it.

Friday, April 1, 2011


This week has been blog fail week.

Early in the week I started a post on how Acorn's 2nd anniversary of leaving the NICU was yesterday, but really couldn't figure out what to say beyond that. This week he's learned to drink from a straw, called the cat "gih-eee" (kitty), babbles constantly, and eaten an entire slice of pizza, and yet there's nothing memorable?

Later in the week I started a post on how melancholy I've been the last few days about this pregnancy and about being "half way" (or more) done, and how I had no idea what was setting off the blues....

...until I realized this morning that they're related.

Now that I've sorted that out, I think I need a nap.