Monday, June 27, 2011

Second verse, same as the first...

I'm already tired of the standard question set - it doesn't seem like all that long ago when Acorn came home and we at least got a new set of questions.

Every discussion with "normal" people here is identical:

Them: So, how's the baby?
Me: Fine.
Them: When's she coming home?
Me: No clue.

In most cases that ends it, because they don't know what else to say.

Thing is, we've learned over the last few years - that first question isn't really asking for a status report, it's an attempt at making polite conversation. A real update usually flies right over people's heads, and their eyes glaze over and they wander away, or they start making stupid comments like, "well, everything happens for a reason" or "you're so strong to go through this" or "God wouldn't give you something you can't handle."

Let's just say my responses to those aren't kind - snark is the nicest thing I can manage for those sorts of things (largely along the lines of, "oh, so your God is such a jerk that he makes little kids suffer to prove that I'm awesome?")

Thing is, I can't actually tell people how Leaf is - I can't tell them about atelectasis (and most of the time I can't even spell that!), PEEP, oxygen rates, blood gasses, or any of the other things we talk about every day. The same goes for Acorn - feeding issues, sensory quirks, the minute reasoning for why a smaller trach means he needs less oxygen...all those things are outside of most people's experience, and are things they don't really want to know. Any conversation takes forever because of the number of words I have to stop and define for them each time I try to give real details, the conversation grinds to a halt, and here we are again, staring blankly at each other.

I'm just so tired of it.

So, the Leaf update for those of you willing to sit through the details and explanations:

BPD (broncho-pulmonary displasia) is the term used when an infant needs oxygen or other supplemental respiratory help past their due date. CLD (chronic lung disease) often results in BPD - it involves damaged lungs and difficulties properly ventilating and oxygenating the body.

Most BPD cases are kids like Acorn - kids who start out with bad lungs, and are slow to improve. Doctors are now seeing a different type of BPD though - infants who start out ok, and get worse in their first few weeks of life. There's some thought that it's because more moms get steroids, so between that and surfactants, they don't do too badly at first, but then it catches up with them. That's what Leaf appears to be doing - we've gone from a PEEP of 4 (the pressure given by CPAP, or the constant pressure given when breathing out on a ventilator)  to a PEEP of 6. That last move was over the weekend,  and appears to be caused by some small areas of atelectasis (where the little sacs in the lungs collapse) in her upper right lung.

The good news is that since we're feeding her only hind milk (the fattiest part of breastmilk - imagine taking whole milk, separating it into skim milk and everything else, and throwing the skim milk away, leaving the cream and the milk solids) she's gaining weight appropriately. The bad news is that it took 2 weeks before that to regain her birth weight on TPN and another week of not gaining to decide to make that change, so now she's behind on the growth curve.

The week before last she had a pretty significant apnea episode, and had to be bagged. They actually started CPR to try to keep her heart going while they got a crash cart. After that, she had a septic work-up which came back negative, and they did a trial run of diuretics, which made her sodium go low. When that was discovered on Monday, it was supposed to be easily fixable by Wednesday,  but it's now the next Monday, and they were still giving supplements until this weekend, when her increased respiratory issues made them worry that the extra fluid retention was not helping matters any. It took this long to get the sodium right because she over-reacts to some doses, and doesn't react at all to others, so they're a little baffled.

On the up side, she's got temperature regulation under control, even though she's supposedly too little to do it. Her isolette is down to 28 C (about 82 F), when she's in just a diaper, and she's not quite 3 pounds yet. She likes her pacifier (a good thing, since she can't do any other oral-motor things like eating while on CPAP).

The plan right now is to wait...which sucks. But the hope is that with a little more growth, she can stabilize and come off CPAP and get on with this whole business of being a normal baby.

Monday, June 20, 2011

Still chaotic

I'm trying to wrap my brain around a number of things. It's working, sort of, though my mind keeps making up little side projects to help distract me from things I don't want to think about.

All in all, Leaf is doing well. We've had kind of a rough week, with some very scary apnea spells, but it's looking like we're on the upswing again. It's hard to keep things in perspective - yes, she's bigger and stronger and more developed than Acorn was....but that doesn't mean we're not going to have setbacks, you know?

Leaf is over a kilogram. She's on full breastmilk feeds - though by feeding tube. Late last week I started specifically pumping for hindmilk to hopefully help her grow a little faster. Supply wise, I'm doing better than with Acorn, but I'm not at a point where I really feel comfortable - we're definitely not at a point where I can count on exclusively breastfeeding without supplementing.

We're settling into the NICU. It is, to some extent, still home - not quite like we never left, but almost. The visiting schedule is different because we have Acorn and his nursing schedule and bedtime to work around. But we've got snacks and a pumping kit and a bottle of lotion in a basket near Leaf's bed, we left our Boppy there this weekend to make holding her a little easier.

We've been decorating - something I'm not sure we would have done to this extent with Acorn, because we were super concerned about the reactions of doctors and nurses, especially given the number of families we saw drawing crosses on their marker boards. We've got a little Goddess offering bowl statue on the shelf. We've added a dream catcher and a tobacco bundle (courtesy of the local Indian Health Services clinic, where I signed Leaf up for their baby wellness tracking program - gotta remember to call and get enrollment paperwork sent for her). Acorn's nurse "helped" him make her a card. And so on and so forth.

I've been thinking, too, about what sorts of things other Pagan parents might find useful when it comes to NICU life. Not sure where those thoughts are going just yet, but there's lots of time for thinking these days.

Saturday, June 11, 2011

Oh the Irony

Just a quick post - no time for writing this weekend; my mother is in town, the inlaws are coming tomorrow for a trip to the NICU and to celebrate Acorn's birthday, which is Monday. There's cupcakes to be made for dinner and for the NICU, and just a ton of other things to be dealt with.

Irony though - and not the Alanis Morrisette version:

My mother got here Wednesday night. We went into the NICU Thursday morning, and on the way out, she said, "Well, now I feel better." When questioned about what she meant, she said, "Well, I couldn't figure out why I was so nervous - this baby is bigger and stronger and older than Acorn. But really, I just needed to see her to be sure."

This from the woman who told me for 3 days after Acorn's birth, that a picture of him was just fine, and should be sufficient in place of actually going to the NICU and seeing him, since I was so sick.

Gee, thanks for your support mom. And she's a licensed therapist....

Thursday, June 9, 2011

A Tale of Two Births - Part 1

So much to say....and so little time to write. Thus, you're getting bits and pieces. This bit went in a different direction than I intended, but going with the flow right now is where I need to be...


A funny thing happened after Leaf was born when they sent me from labor and delivery to "mother-baby" (that floor that used to be called the maternity ward, where they keep moms and their new babies for a couple days or so to make sure nothing obvious is wrong) - I ended up in the same room I had when Acorn was born.

Talk about deja vu. So many memories came flooding back.

It turns out I got the same room because they tend to put NICU moms on one end of the hall if they can help it - supposedly to protect us from all the normal take-home babies, but it's still hard to be in a hallway of people celebrating and going home with their new bundles of joy.

Instead, though, what I got was memories of Acorn.

I spent 4 days in labor and delivery because I was so sick and my blood pressure was so high. Not quite bad enough to go to ICU, but not good enough to go to mother-baby either. I had the beginnings of liver failure, and the beginnings of kidney failure, and every needle stick left huge bruises, as did blood pressure cuffs, and just about anything else that touched me.

I saw him once in that 4 days, late on day 3. It was the hardest 4 days of my life.

My mother had flown up Thursday when she heard they were inducing labor. Friday Acorn was born. Sunday my father flew in. My in-laws were there of course, as were a couple of close friends. Everyone saw Acorn before I did. Everyone argued with us about not telling them what we were naming "her" because all the ultrasounds had said Acorn was a girl, and the doctors hadn't said otherwise during the birth.

When I finally moved to mother-baby, it didn't get any better. I spent one night there and finally got our birth certificate paperwork taken care of, naming what we thought was our little girl. I'd seen Acorn twice more when one of the doctors came to tell us that afternoon that while our ultrasounds had all said girl, truthfully, they didn't know if Acorn was a boy or a girl.

At that point, Acorn was on an oscillating ventilator - one step down from ECMO, and ECMO is basically the last thing they can do before letting a child die.

I know we floored the doc with our responses, but we have a close friend who is transgendered, and I have a long time (but not overly close anymore) friend who is intersexed. It didn't really much matter to us either way, but our first big concern was the grandparents, most of whom are not as accepting as we are....and my second concern was the birth certificate, as stupid as that sounds. It was one of the few things in my control, and I knew I needed it to get Acorn added to our insurance, and clearly that was important, because OMG was this turning into an expensive hospital visit.

After the doc left, though, I fell apart. It was just too much all at the same time. Eventually my husband left so I could sleep, and he asked the nurse to screen visitors for me (because our parents were randomly showing up, and I was not at all ready to explain this situation to any of them)....and then he called another close friend of mine. I had already texted that friend, and as is his way, he eventually got the major details out of me. He decided to stop by on his way home from work.

I remember sitting there sobbing, trying to talk about it all, and it felt like I was staring into an abyss. He later told me that it was one of the hardest conversations he'd ever had with me - that he wasn't sure that there was any way to keep me from losing myself. There was a point that afternoon where the thought crossed my mind that if either Acorn or I didn't survive, maybe that wouldn't be such a bad thing, as messy as this all seemed to be getting - not that it would be less messy that way, just that it might be less drama in the long run.

At any rate....I slept. We spent some time with Acorn and changed his diaper for the first time so we could see what all the fuss was about (and now that I've seen Leaf's genitals, I guess I can understand why there was confusion, even though I have yet to see a "normal" micropreemie boy). I slept more, on the advice of my nurse. And in the morning, things were different. Still complicated, but manageable.

Sure, there was depression, and grief, and a lot to process, but I am not sure I really needed the antidepressants that I was put on the day after Acorn's birth. They sure as hell didn't help in terms of actually processing all of it - that ended up being delayed until long after he was finally home.


Leaf is so much different. She's tiny - that's the same - but not nearly as fragile looking as Acorn was at this point. Her respiratory status is better than his was on his due date. She got to wear a shirt today, for pete's sake, which Acorn didn't for weeks and weeks.

I've been approached by the post-partum social worker about the risks of post-partum depression. And by the NICU social worker. And by the NICU parenting program coordinator. The fact that I'm seeing a therapist seems to have made all of them feel better; my therapist thinks that's pretty funny all by itself.

I'm not the person I was then (and even then, I was not the person I was in college, at the point where I actually was severely depressed & suicidal). Leaf is not Acorn, and while she has her issues....they are no more complicated than a lot of what we're already managing, it's just a matter of getting the hang of a few more schedule complications, and since our schedules are less complicated now than a year ago, it's not like that should be impossible either.

Tuesday, June 7, 2011

Updates and random thoughts

I've been terrible at writing lately. Mostly, it's because everything here is chaos...and part of the chaos right now includes a barely functioning computer.

Thing is, I need to write. Need to process everything that's gone on recently. Need to let the tears flow that I've been holding back for weeks - and that is such an overwhelming idea that I don't even know where to start.

So I guess let's start with right now.

Miss Leaf will be 2 weeks old tomorrow. She's doing well. She's getting some breastmilk, and doing a lot of normal baby things (pee, poop, cry, sleep), she just does them in a plastic box, with lots of tubes taped to her face.

I'm finally home - a week as of tomorrow. Physically, I'm easily worn out, but haven't really even taken much ibuprofen in the last 5 or 6 days, because it's not an issue of pain. I'm spending a lot of time with my breastpump (it's a love-hate relationship....mostly hate, though). Pumping is going ok; I'm desperately hoping that we can start actual breastfeeding in a couple of weeks though, because pumping did not work out so well with Acorn.

Emotionally....well, the "post partum adjustment" social worker did tell me that it was normal to be extra emotional the first 3 weeks or so post partum, and we've definitely hit that extra emotional patch.

It doesn't help that a friend passed away last week from a complication of childbirth.

Anyway. It's time for sleep, so I give up for now.