Sunday, July 31, 2011

I feel like we're the zoo attraction

I used up all of my dealing with people points today before my in-laws ever left the NICU, and then I had to deal with them through dinner....

Acorn is 37 months old. That means he left the NICU 28 months ago.

In that time, his grandparents have been out to see us for 3 birthday parties, and to help build his play structure. Other than that, we only see them on holidays. They visited about once a month when he was in the NICU - go to lunch with us, spend an hour or so staring at him, and then head home.

Yesterday they called, wanting to come visit today....because they want to visit Leaf. Their interactions with Acorn are spotty at best - they've forgotten what it's like to have a toddler or preschooler, I guess, because they want him to visit on their terms. Sit in their laps, read a story, and so on - things he doesn't do well, because he wants to be up and moving, but worse, things he won't do with them because he sees them so rarely.

It's a shame that Leaf appears to be the only reason they're visiting - like going to the zoo for the afternoon. Take the tour, stare at the child in her crib (behind bars even!), move on to the next attraction (Acorn), be amazed that he's got opinions and knows what he want (remember, folks, just because he can't talk doesn't mean there's anything wrong with his brain!), then dinner and home.

Wasn't that a nice day?

Sigh.

And guess what? In two weeks we get to do most of it again, when out of town family come to visit (spouse's uncle, with his wife-to-be - a former friend of his now ex-wife - and her two children...there's drama there that I don't want to be near with a 10 foot pole). We've already said we won't drive the hour out to the grandparents' house with Leaf in the hospital - if they want us at dinner they can pick someplace closer to us. What we haven't told them we also won't be letting them all into the NICU. I'm not letting someone else's kids back there - I don't know where they've been.

Thursday, July 28, 2011

inconceivable

Bedtime was a fight. Acorn was wound up, even though we'd gone to the mall for a good long walk. I was frustrated and irritable anyway, and there was no nurse coming in to sit up with him so my already far too shortened sleep was likely to be even less.

And after 45 minutes of flopping around,  climbing out of bed, etc etc etc, I was ready to scream.

He wouldn't answer me when I asked if he wanted milk. So I got him some anyway - straight from the electric cooler currently in my bathroom (the fridge is on its last legs, and a new one comes Saturday, but between now and then I'm not risking my breastmilk in it). He settled in next to me, drinking greedily, and I listened to the rain and thunder outside and felt his breath on my cheek and thought, "you know, this is more how it was supposed to be."

Most of his life, the idea of giving him breastmilk has been inconceivable. First, there wasn't enough milk, then I stopped pumping all together.  And then when Leaf came, I was terrified that Leaf wouldn't have enough either. But I'm hovering right around the 700 ml a day mark - that's about 24 ounces, and is considered a "full supply" - suffient to breastfeed a term baby.

Leaf is getting hindmilk only, and Acorn can easily tolerate the foremilk (and it'll be a long time before Leaf can take the lower calorie, higer sugar-per-volume foremilk). So rather than wasting it, we've been giving it to Acorn. Clearly he can tell the difference - only milk and milk-like things go in bottles as far as he's concerned, and everything else goes in a cup (and milk doesn't belong in a cup at all...that's just plain wrong). But he doesn't seem to mind at all.

I'd like to say that bedtime was a breeze after that, but I'd be lying. It was another 45 minutes of flopping, asking for a diaper, and finally getting up and getting a chair and getting me to sit in it with him to get him to sleep. Even then, comparing his muscular 32 pounds to Leaf's 5 pounds....and comparing both of them to how big Acorn was when he was less than a pound and a half..... It's still inconceivable to me that this sprawling 3-foot-tall boy was once smaller than his head is now.

Wednesday, July 27, 2011

Welcome to our Crazy Life

So far this week:

My car has been in the shop. It's worth ~$2000, it needs 3 different repairs, each quoted by the dealer as being $750. We're going to make one of them (which, according to a late breaking text, isn't actually the repair we thought it would be - dealer's diagnosis and local shop's diagnosis disagree, so this first round is considerably cheaper than anticipated), and get some other things in order to be able to pay all or mostly cash for a replacement vehicle later this year.

The washer started making noise a couple weeks ago. ~$200 later we will have a new pump tomorrow. I do not want to replace this until Leaf is out of diapers - high efficiency washers and cloth diapers seem to have issues, and I like my old washer.

The fridge started making noise last week. The compressor is bad, which is a $750 repair. I think the fridge only cost $780 when we bought it 10 years and 6 weeks ago, as our housewarming present to ourselves. The repair guy said he wouldn't fix it - we're better off buying new.

My great aunt (or 3rd cousin, or something - in this case, tribal kinship rules make more sense than actual geneology) passed away last night. She was my grandmother's cousin of some sort, but she was raised by my great-grandparents because her family was sickened by a cholera outbreak, and they wanted to protect her, so they sent her away. Last year we learned that Aunt E had a sister still alive, back on her home reservation.

Aunt E was the first person I ever met (and I was 10 when I "met" her the first time that I actually remember meeting her) for whom faith was something one lived their life by, rather than just the name of the church one attended. For her, it wasn't about needing to *believe* in something - it was complete acceptance, a quiet knowing - there was a glowing solidness to her faith. I used to pray that I'd be given faith like hers, and in some ways, I have that solidness now....just not in the same God, and not always to the same extent that I always saw in her.

Aunt E was diagnosed with stage IV metastatic cancer of the lymph nodes back in 1993 or 1994, before I even met my husband, and she decided a year or so later that she was going to enjoy what time she had left, rather than go to doctors so she quit all conventional treatments (though she did see a traditional healer)....and cancer still wasn't what killed her this week, more than 1 5 years later.

And that's just the unusal stuff, not anything related to the NICU or nurses or work or the terrible threes (really, two was a good year for us. Three is turning into a disaster of frustration and tantrums, and I really would like my sweet boy back, thanks).

No wonder I feel overwhelmed - that'd be a rough week without our normal chaos.

Thursday, July 21, 2011

Some days, it's the little things

A quick little post for my first day back at work from maternity leave...

If you've read my breastfeeding carnival post from earlier this week, this will make a heck of a lot more sense....

Want to know how to get funny looks from an OR recovery room nurse? Tell her that you have a bottle of breastmilk for your three year old and that it's your understanding that it counts as a clear liquid, so he can have it, right?

Especially since he's only half awake, sobbing, and hasn't eaten a thing in over 12 hours, and won't drink apple juice or sprite from a straw in his semi-conscious sobbing state of unhappiness, and won't drink either from a bottle.

Want to know how to make her sniffle a bit and look ashamed?

Explain (after he's settled in with the bottle, and quieted considerably) that your *other* child is upstairs in the NICU and you're pumping for her...and that you didn't have enough milk for your 3 year old when he was an infant, but that you have more than enough for the little one now to share with your preschooler.

Yeah. That part was good. The rest of the surgery thing kinda sucked, with all the sobbing and not really waking up for several hours, and the obvious pain later in the evening, but I'm happy to report that we're now g-tube free! One stoma down, one to go....

Wednesday, July 20, 2011

sigh

I find myself in this odd in-between space, and I'm not sure what to do with it. Clearly, I'm overwhelmed. Clearly there are bad days. Clearly there are things falling off the table. But I'm not depressed (and my therapist agrees).

For me, true depression steals away my words for weeks - even months - on end. And that's not where I am right now. For what it's worth, antidepressants did that too, so I'm going to try to avoid them for the foreseeable future (and since my therapist thinks I'm not really depressed, they're not really the right approach anyway). Clearly, anything that changes such a fundamental part of me is a problem - normally if I don't write, I eventually feel like words will come pouring out of my ears, and when I'm depressed, there are simply no words, and having tried it before, that's  no way to live.

However....this week I go back to work. This week I give up another 9+ hours a day out of days that are already too full.

And all the things not done sit heavy on my mind - some little, some big, but none likely to be handled anytime soon. I think we're mostly hunkering down and waiting for the storm to pass.

Tuesday, July 19, 2011

Tomorrow is a Big Day

Tomorrow we take a big step towards being less medically fragile - Acorn's feeding tube is being removed. It's somewhat anticlimactic, seeing as how it's only use since December was to keep him hydrated when he had rotavirus earlier this year....other than the fact that they're actually going to put him under in the OR and sew the hole shut (which we were originally told was not generally required, but the surgeon says it's been there long enough that it likely won't close on its own, so why waste time).

We're having a lot of changes this year. New baby, new round with the NICU, no g-tube, and no trach (and no nursing, plus a new nanny) is coming...and that doesn't include things like this week's first ever sentence: "I go round round" when he was told we were going to see the occupational therapist, who lets him spin on her swings.

No wonder we're all stressed.



Thursday I go back to work - not looking forward to that.

Monday, July 18, 2011

Eight Times a Day

This post is part of the July Carnival of Breastfeeding, hosted by Elita, over at  Blacktating - the topic this month is "Breastfeeding the Special Needs Baby" - a topic right up my alley.


*****

Eight times a day, everything else stops and I sit here for a half hour and pump.


Eight times a day, I put liquid gold into little plastic tubes for my now 7 week old, 4 pound baby girl.

Seven of those are at home, without her. The last precious session is almost always at her bedside, with the pump I begged and pleaded to be allowed to leave in her tiny room, next to the plastic box where she spends most of her time.

Eight times a day, I hope that next week she will be big enough, better enough, to talk about breastfeeding from an actual breast, rather than dribbling milk down the tube in her mouth.

Eight times a day, I'm shocked that anything comes out of my breasts at all. Making milk to feed a baby really is a superpower.

Eight times a day, I write down every last milliliter of milk pumped, keeping a tally - at the end of the day, I'm always surprised at how much there was (right now, just less than 3 times the amount she is fed in a whole day).

Eight times a day, I'm reminded of the last time I did this - pumping for my now 3 year old son. He was a little more premature, a little smaller, and a lot sicker...and I had not nearly enough milk to sustain him, no matter how much I pumped.

Eight times a day I think about how much milk is in the freezer - bottles and bottles of 1-2 ounces each - right now, 15 bottles a day. And I'm reminded of the day we used the last of my frozen milk for my son, just 2 days before his due date.

Eight times a day I think about how much I loved breastfeeding my son - all 3 weeks of it, starting at about 3 1/2 months old, just before his lungs couldn't keep up anymore. When he was stable again, 2 months later, he had forgotten how to suck.

Eight times a day, I remember pumping eight times a day and bringing one full bottle to feed him - not even a full feeding by then. It doesn't make me cry every time, but more often than I like to admit.

Eight times a day I dread sitting down with this pump, but it's my only option to get breastmilk for my little girl, which is by far the best thing for her right now. It's also our best hope at one day having something resembling a normal breastfeeding relationship.

And so, everyday, I pump eight times a day to make sure she gets what she needs now, and hopefully long into the future.


*****

Please read some of the other posts in this carnival too:


Kelley @ Navagating: No one told me I couldn't
http://navagating.blogspot.com/2011/07/no-one-told-me-i-couldnt-my-nursing.html

Tanya: They said you can't breastfeed a baby with Down Syndrome http://breastfeeding.blog.motherwear.com/2011/07/they-said-you-cant-breastfeed-a-baby-with-down-syndrome.html

Marla @ A Place to Write Things: Breastfeeding My Daughter, Who Just Happens to Have Cerebral Palsy
http://aplacetowritethings.blogspot.com/2011/07/breastfeeding-my-daughter-who-just.html

Jenny @ Chronicles of a Nursing Mom: Breastfeeding is the Only Way
http://fabnaima.blogspot.com/2011/07/guest-post-breastfeeding-is-only-way.html

Blacktating: In A World of Uncertainty, Boobs Are Certain
http://www.blacktating.com/2011/07/in-world-of-uncertainty-boobs-are.html

Tuesday, July 12, 2011

Communication

Sunday was the first day I ever cried about Acorn's speech delay. And I cried more than once over it through the course of the day.

Granted, the tears are more complex than just "speech delay, oh noes!" There's exhaustion, the ever present moodiness, and a lot of frustration in there too.

We've had a tough week. Acorn is off, somehow. First it was something at bedtime - looking at the walls as if there was something there (I smudged, even though I'm pretty sure there's nothing here - I'd know if there was something energetic or spirit in nature on my turf), or not falling very deeply asleep so that if we move, he jumps up, terrified that we're leaving him. Then it was reacting in apparent fear to scenes in videos he's seen dozens of times.

It's continued to escalate - he's had a meltdown because I was in a different aisle than he and his father at a store. He's sobbed over his choice of movies.

And he doesn't have the words to explain it.

He's clearly frustrated when he can't get us to understand what he's upset about. And his frustration is driving us all up a wall.

I keep reminding myself that it's a phase. It'll get better. He's communicating more. We're paying close attention to try to figure out what's bothering him.

But in the meanwhile, it just sucks.

Monday, July 11, 2011

A Little Project: Support for Pagan Parents of Preemies

According to the March of Dimes, 12.8% of births in the United States are premature - less than 37 weeks gestation. In most developed countries, it's a little less, 5-9%. The reason for premature birth is never determined in fully half of those births. Still, that's a lot of babies - 1 in 8 - so I know we can't possibly be the only Pagan family who's been through the NICU wringer.

These days, modern medicine produces some true miracles - one occupational therapist I know from our NICU experience points out that when she started working 25 years ago, the youngest babies that survived were 28 weekers - babies like Leaf. Babies like Acorn would likely not have survived at all (and frankly, I likely wouldn't have survived that pregnancy). Now days, more than half (depending on the study) of 24 weekers survive, and the youngest baby on record to survive was 21 weeks 6 days. That's not to say that there aren't lifelong complications for many of these tiny babies, but the odds get better the older babies are.

Life in the NICU is complicated and stressful. It has the potential to be more complicated and more stressful when your beliefs are not quite so mainstream. When you know that many of the people you're depending on to care for your child aren't going to approve of your faith, you have to wonder what happens to your child if you're open about your beliefs. Hospitals have chaplains, sure, but in many hospitals it's hard to know which of them will be ok with your faith and which ones will not.

I know - I've lived it. And right now, I'm living it again.

For those of you new to my blog, let me give you the brief back story: Acorn, my 3-year-old son, was born 13 weeks early, and spend 291 days in the NICU, along with another 13 days in various PICU units in his first year. He came home on a ventilator, unable to breathe without its assistance, and a long list of associated diagnoses. Leaf, my newborn (almost 7 weeks old at this writing), was 12 weeks early, and is currently in the same NICU Acorn was in.

After a lot of contemplation (because what else do you do when you're spending 4 hours a day every day for weeks on end with your breast pump, pumping milk for a tiny baby who cannot eat yet?), I've come to the conclusion that families like ours could use a little more in the way of support. Sure, there are mainstream preemie groups out there....but who do you ask about doing energy work on your preemie, or about doing baby blessings, Wiccanings, Sainings, and the like in a hospital environment? Who do you talk to about concerns about being in or out of the broom closet in what can sometimes be life-and-death situations?

With that in mind, I've got some resources in the works. If you know a Pagan family of any type who's in the NICU now or was in the past, feel free to send them my way.

First, a facebook page for parents to network. Search for Pagan Parents of Preemies, or use this link (I hope the link works - once there are 25 likes on the page I can get a shorter nickname link, and I'll come back and fix it). It's my intent to have some discussion threads, and to try to get a prayer/energy request post up every week.

There's also a blog - Pagan Preemies - I'm hoping to post the stories of different families here, along with other items as they come up, and suggestions for surviving in the NICU. Guest posts welcome.

We'll also be putting together care packages for families in the NICU. There's a request page on the blog. Long term, I have some big plans for these, but we're starting small - blanket, appropriately sized clothing, generally useful things (hand sanitizer, lotion, etc), a religious pendant or emblem, a battery powered LED candle, and so on. More ideas welcome, especially if you know where I can find the items you're suggesting.

Also on the blog you'll find a newsletter sign up. That will have a recap of items from the previous month and a list of all prayer/energy requests. It'll also have news about how many care packages are sent and what things we're looking for to go in them.

There are some additional things in the works. An ebook about surviving the NICU as a Pagan is in the works. A possible logo contest with prizes would be fun. I'd like to get some publishers to donate copies of the various prayer books that are out there, or maybe collaborate with other NICU grad families to create our own. I'm sure there's more that will come in time, but this is a good start.

A final note: at this time, this is not officially a non-profit, it's something I'm doing because I think it needs to be done, so donations aren't tax deductible. But, if you happen to run a church or other Pagan non-profit that would be interested in taking us under their wing, I'd love to hear from you!

Friday, July 8, 2011

Our Life in a Fishbowl

The essay below was written last year for a proposed anthology on chronic illness and spirituality. The anthology fell through, so I started thinking about what to do with this instead. I realized that it rings even more true now with Leaf in the NICU than it did when I wrote it, and I cried last year writing it.  

So, after some consideration, I updated a few things, and I'm posting it here as a prelude to a project I'm working on. I think families like mine - Pagan families of all sorts, with babies currently or formerly in a NICU - need support. We need connections to others. We need to be able to talk about how we navigate this journey, in all its stress and chaos, and come out the other side without losing ourselves. Next week I should have the remaining details ironed out, and I will post them at that time.

Without further ado, let me tell you about this fishbowl we've lived in for the last 3 years....


When your child is ill, the world stops.

When your child has a lasting illness...the world goes on without you, until you figure out how to get back on the ride.

My son Acorn recently turned three years old. In his first two years, he spent 291 nights in the NICU (neo-natal ICU), and another 14 in the pediatric ICU (those 14 nights were earned in 4 visits to two hospitals, and included an ambulance ride with full lights and sirens). In his third year, we had only one night in the PICU, and one on a regular pediatric floor – a huge improvement.

I went into this journey of parenthood with a deep faith in my Gods and Goddesses. That faith has seen me through thus far, on good days and bad, and helps me to continue to weather the storm. The events of the journey, however, have changed the way I approach the outward aspects of my faith – possibly for good.

Acorn is our miracle child in every sense of the word – a fertility treatment baby, born 13 weeks early and more than 2 weeks behind on growth even then. He's now 3 years old, running and playing and nearly normal – cognitively above average, about the right size for his age, physical skills are mostly normal, his lungs are improving week by week and month by month, he eats as well as any three year old, and he's cute as a button. I thank the Gods every single day for him – for all the things that have gone right, for the wisdom of doctors to make hard choices, for the staff that has cared for him, and for the things we've learned from him.

When it became obvious that he would be born extremely prematurely, I asked those same Gods to protect him. What I didn't know was the toll that the experience would take on all of us. I was very much out of the broom closet before parenthood – it was easier for me that way. For Acorn, being at least somewhat in the broom closet has been a necessity, and has been since his birth, and that's not the kind of Pagan or the type of parent I ever thought I'd be.

The first thing you learn about the ICU is that there is no privacy. Even though our NICU has “private” rooms for the smallest and sickest babies (which Acorn was), the walls were glass, and the nurses came running every time an alarm made a peep, plus anytime they felt like poking their head in. Six families were grouped together in these glass walled cubicles, and there were no secrets – our comings and goings, smiles and tears, all were on display for everyone to see.

Some families posted notes from their ministers on their message boards. Others went so far as to post crosses and pictures of Jesus and Bibles all over their rooms. We felt we could not place anything Pagan in our room to provide us the same comfort – we were dependent on doctors and nurses who, in most cases, would not share our faith – our child's very life depended on them, and the idea that they might treat him differently if they knew was too much to bear.

As the weeks in the NICU went by, we saw the chaplains a few times. All of them were nuns, except one (and she had sneaked up behind me one day when I was reclining in an easy chair, holding my barely 2 pound baby with his unstable ventilator connection, in a room barely big enough to turn around in, so she might have been a nun too for all I know). They asked if there was anything they could do for us, and I declined – I happen to know that I'm the only Pagan on file in their chaplain's office, if my nearly decade old file is even still there, with my no-longer-existing phone number from my previous residence. So, we kept an altar at home, and sang Pagan chants softly when we had a few moments without anyone in earshot.

We didn't have the church support that many of the other families did – no one brought us dinner or asked if we needed groceries or a break or just someone to talk to. The whole situation was extremely isolating.

At 4 ½ months, Acorn went into severe respiratory distress. To remedy the situation, he needed to be on a ventilator again, so he had a tracheostomy (a hole in his neck, with a tube to the outside, to breathe through – often called a trach by families in similar circumstances) – much like Christopher Reeve, after his spinal cord injury. He also had a feeding tube surgically implanted in his belly, and got much of his nutrition through it.

In fact, as weeks became months and we became the longest-resident family on the unit, nurses started sending other families to talk to us, so that we frequently didn't even have the privacy of being out of earshot of others. I got requests like, tell them your baby was the same size as their's and is just fine (well, as fine as a child with a tracheostomy, on a ventilator can be). Tell them that they're not alone, that they're in good hands. Tell them what a trach is, and how much better it is than the alternatives. I got questions from some of those parents too. How do you do this every day? How do you come in here with a smile? Telling them it was because of my faith only brought more questions. I deftly deflected questions from them about that faith, but could not avoid continued assurances from some families that their God would heal our son. Again, I found myself thinking how different the discussion would have been had we had a pentacle on our message board, or a goddess statue – would it have interfered with our ability to help these other families?

Another thing that I found: When most of your non-working hours are spent in a place where your religion feels unwelcome, it impacts your practice. I had no time at home to celebrate Sabbats and Esbats. I couldn't celebrate them openly with my child in the hospital. My in-laws kept butting in on weekends I had hoped to get a little time to go to rituals. I couldn't really celebrate anywhere.

What happened instead was a transformation – my practice became more efficient, more succinct, with fewer tools and props. Meditation and prayers became key tools – what else can you do when trying to hold a fragile child still enough not to dislodge the tubes and wires keeping him alive? Energy work took on new importance too – when your child is too sick for you to even hold him, all you can do is send energy; when others ask for your prayers (even though you aren't of their faith) and you need to spend time with your own child, energy can still be sent.

Even after finally leaving the hospital, we have nurses in our home every day. None of them are Pagan. As a family, we have taken to keeping our faith quiet, rather than losing good nurses because they're uncomfortable here. This has caused some issues with Christmas, but for the most part we've given up all privacy in favor of having our child cared for properly, because we have no other options. Altars have been moved into bedrooms rather than in the open, rituals are done in the hours no nurse is here, and we've been cautious about decorating Acorn's room with anything identifiably Pagan.

We can't exactly ask our nurses to attend festivals with us. We don't have enough nursing hours to leave Acorn at home for a weekend while we go away either, if we want to have enough care during the week to go to work. Even if we could swing a day out to a local festival, we've been instructed to avoid large crowds, to help minimize the risk of Acorn catching a cold or the flu, which can be very dangerous for a child with bad lungs. And how do you take a child on oxygen camping – off the ventilator, it's a little closer to possible, but still not very likely. So, again, we were isolated. I keep my solitary practice, though it's still usually quick and with few tools, and we do some things as a family, but not much in the way of public or group rituals. Most groups want you to put in a certain amount of time each month, and I just don't have it to give – not that I wouldn't love the chance to take time for myself regularly, but that for three years, our schedules have revolved around Acorn, around his therapies and his nursing schedule and his health.

In some ways, I miss those connections with other Pagans more than anything – not in terms of the strength of my faith, but in terms of having people to have conversations about faith with, and in terms of having role models for being a Pagan parent to a little boy who thinks the world is a magickal place.

One day in the not too distant future, we see a time when Acorn will be “just like” other children – when no one meeting him for the first time will suspect the story of his life, unless they know what to look for: the tell-tale scar from a tracheotomy, the careful pronunciation of a child with years of speech therapy behind him, the fleeting terror that crosses his face at the mention of a doctor, the absent minded fidget with his shirt where his feeding tube was.

They won't have the blessing of watching him learn to open his eyes when he was a week old, or the understanding of how amazing the human body's capability to heal can be. They'll just see the person he's become – the child of the Goddess he's been all along.

Until then, I lean on my faith, and the deep well of peace it provides, and I enjoy my daily reminder of how magickal the world really is.

Monday, July 4, 2011

a week of the same

It's been a whole week since my last update. You'd think that'd mean I had something to report, but no...only that Leaf is now in actual Pampers preemie sized diapers (with the smell that will always remind me of the NICU), and still growing (on her own little curve, below 10th percentile, when she was 10th percentile at birth, but then fell behind in trying to regain her birth weight).

We're all frustrated - even the docs. It sounds like there will be much more discussion this week (after several weeks of her being a major topic at their conferences), because the options are limited - try diuretics again and keep a closer watch on her electrolytes, put her back on the vent to try to open up the little air sacs, go in and ligate her PDA, do nothing and wait and see....all have their risks.

For all that they keep reminding me that she's not Acorn, they're now starting to see the ways that she's so much like him - so obviously his sister. And unfortunately, the things they see are not the nose they both share, or their amazingly long toes...it's that Acorn was so so hard to get off the vent, and then even worse to get off CPAP, and Leaf is just as hard.

Tomorrow it's off to the surgeon to get Acorn's g-tube looked at, and to discuss (and hopefully complete) removal. Hopefully I'll get up early enough to fill his wading pool so he can go out and splash to his heart's content when he gets up from his nap.

Tonight he's cranky and skittish. Not entirely sure what happened with his nurse today while we were gone. I hate this part of having nurses.

As for me, I'm hanging in here. Some days are better than others (shoot, some hours are better than others). Pumping is going better than expected, which helps, but it's still time consuming and draining. In my copious spare time (hahahahaha) I'm working on a little project, which I'll be saying more about in the weeks to come.

And now, off to get back to writing on that project, and listening to the fireworks in the distance, and hoping that Acorn actually goes to sleep finally.