Eleanor has been at the Big Hospital for about three days, now. A handful of tests have been run, a couple more are probably coming up.  I have bits and pieces of new information, initial test results, preliminary findings.  But not much. Not enough for a diagnosis. Just enough information to be a danger to myself.  I am staying away from Dr. Google, but it’s hard.

The two pieces I will share today are these:

1. She is not being discharged any time soon. On her feeding alone, she’s going to be there for a minimum of, I’d say, 2-3 weeks. Could be longer.  I have no way of knowing right now, except that this will not be a brief stay.

2. Some test results, while still very vague, are starting to point towards there being a Thing. Not just preemie-style grow-out-of-it stuff, but a Thing, a Diagnosis, a Name to whatever it is she’s got going on. I don’t know what it will be, I don’t know its relative severity or prognosis or anything.  But I believe there is a Thing in my future.

You will have to forgive me for being so vague.  In part, it’s because what information I currently have is, itself, pretty vague. I truly don’t know much, except to say that it seems like there’s something brewing. Also, for once, I’m choosing to show a little restraint in how much I share here.  I have every intention of talking about whatever the Thing is, once I know anything about it.  But I’m going to hold off on sharing every little puzzle piece as it trickles in, since I’m not a doctor and so far have no idea what any of it means. And neither, so it seems, do the doctors. They’re still trying to put it all together.

We are, as you might imagine, stressed right the hell out. M and I handle it differently, but there’s no shortage of stress.  The not-knowing, the partial-facts, the waiting, are all brutal.

But I feel a little better when I’m there. A little.  I feel better when I get to hold her, see her chubby face, change her stinky newborn diapers. I’m glad she is so stable. I’m glad she isn’t fragile right now, she isn’t touch-and-go, she doesn’t seem particularly, in a sense, “sick.”  She’s cute, she’s sweet. She’s generally pretty calm, except when she gets pissed off, at which point she reminds me of newborn Rebecca, screaming and bright red all over. But thankfully the rage passes pretty quickly. She sleeps a ton, of course, but has some lovely periods of quiet wakefulness.  She makes funny little sounds and faces and smiles in her sleep.  Every time I have to leave the hospital, I say goodbye and give her a kiss on her head at least six or seven times before I can peel myself away.

It’s possible the other shoe is about to drop. It’s possible a whole shit-ton of shoes are about to drop.  It’s still, maybe, possible this will be much ado about very little, though I’m sorry to say that I rather doubt it.

But I don’t know.

Eleanor and I got to go for a ride this morning. Unfortunately, it was not in my minivan and we weren’t heading home.

Over the last several days, her progress had really stalled.  She did manage to kick her oxygen habit, for which we are grateful.  But her feeding has not gotten better, and in fact was getting worse, especially as the volume and caloric density of her feeds went up.  Given that she is nearly two weeks old, nearly at her due date, the doctors think the time of wait-and-see is about done and it’s time to really get to the bottom of why she isn’t taking her bottles at all well. Additionally, there are a handful of other curious symptoms and characteristics that warrant investigation.

A number of tests have already been done at our very capable community hospital, and every test has come back beautifully within normal limits. Which is great, but doesn’t seem to get us much closer to an answer, nor closer to bringing her home.

So, today, we rode in an ambulance (no sirens or lights, she is totally stable and was in no rush) to one of the big teaching hospitals downtown where she can get more detailed evaluations by more specialized doctors. A feeding team. Genetics. Neurology. Who knows what else.

I am simultaneously glad and terrified.

I agree with the doctor that “wait-and-see” time is done, and I’m glad that we’re taking some action. I’m glad to live in Massachusetts, only a short drive away from some of the best doctors and hospitals in the country.

But I’m hugely stressed out to have her farther than five minutes from my house, both on an emotional and logistical level. I’m nervous about the tests. While I want answers, no parent wants to think there’s anything wrong with their child that is any more serious than a cold.  I hate that I have no idea how long she’ll be there. Could just be an overnight while they do tests, come up with a plan, and send her back to our hospital.  Or they could order more tests, want to watch her, keep her for longer. I have no idea.

I alternate several times a day between calm acceptance and complete freak-out. My gut reaction is that, whatever “this” is, it will be something we can come up with a plan and manage at home. That, whatever it is, she’ll be alright. But sometimes the dark side of my imagination spirals out of control and I end up sobbing in the shower.  The fact that I’m married to Mr. Worst-Case Scenario isn’t too helpful, either. Thankfully, he keeps most of his scenarios to himself, but it’s not as though he’s a shining light of optimism.

Today, I have been in straight logistics mode. Hugs for the nurses as we left our “home” hospital, but otherwise just stayed with Eleanor while she got packed up, rode in the ambulance, and settled in her new digs. No room for being emotional or scared. It helps that, despite her feeding issues, my girl is quite stable. No one runs around like chickens with their heads cut off, the nurses work quickly and efficiently but without a major sense of urgency, so it’s easier to stay calm.

It was a major adjustment for me and M, too, to get used to this new place. New people, new procedures. Enormous building with wing after wing, floor after floor, huge amounts of foot traffic, and a main lobby that reminded me forcibly of checking in at a Disney World hotel.  While I’m not unfamiliar with the medical area in Boston (a neighborhood with at least four or five world-class hospitals), the contrast with our local hospital made me feel like a country mouse.

So, there we are. Eleanor is settled and fine, consults will likely happen tonight or tomorrow morning. Being that her condition is so stable, she is more likely to be bumped for someone else who is a greater emergency, but hopefully there won’t be major delays. Hopefully by tomorrow night we’ll start to have some feedback and the beginnings of a plan.

We’ll see.

I’ve been home for three days, now.

The first day and a half were intensely hard, raw, ragged. Many, many tears were shed, over anything and everything.  To say that being home with Eleanor still in the hospital is hard and heartbreaking, would be a gross understatement.

And yet, coming home was a welcome move. Nice to be in my own space, nice to not have my vitals checked a few times a day, nice to not have to call a nurse and repeat my name and birth date to take medicine.  More than nice to spend more than 20 minutes with my husband and my sweet big kids (who are doing so well with all of this, I must dedicate a separate post to how awesome they are).  My in-laws are here, and while it’s a challenge to let go of my fiercely-independent-control-freak tendencies, the fact is that the help they are providing is keeping us afloat.  They have been taking care of the groceries and dinner and laundry, they play with the kids while I try to rest or pump, and generally keep the house running. It’s not the easiest thing for me, but it is a lifesaver and I am grateful for their help.

Getting to the hospital is a delicate balancing act.  Obviously, there never seems to be quite the right amount of time to be here or there, but we seem to have come up with a fairly workable routine over the last few days.  After the kids get dropped off at preschool, we head over for one visit.  And after dinner, we have the grandparents put them to bed while we go for another visit.  Part of me, of course, wishes I could spent a whole lot more time at the hospital.  I find myself almost nostalgic for our first time on this ride, when we only had to go home periodically to let the dog out.  But I know that, if I spent more time at the hospital, I’d feel just as guilty about not being at home.  The truth is this: as much as I would like to be there nearly all the time, Eleanor will not notice, nor will she ever care or remember, how much time I spent at the hospital. But my big kids will.  So we’re trying to make our hospital visits as minimally disruptive for the big kids as we can.  That late-evening trip is brutal, as I’m ready to fall asleep on my feet before we’re even out the door, but I’m always glad I went.

Of course, when I am home, it’s not like I’m footloose and fancy free. No, I’m in the insane merry-go-round of exclusive pumping in the hopes of building a milk supply that will allow us to breastfeed when she comes home (no, I’m not even really attempting it right now while she’s in the hospital, and yes, that kind of sucks).  So I’m pumping every 2 hours during the day and every 3 hours at night. I am, to say the least, exhausted.  Yes, I try to take at least one nap per day.  But when you’re pumping 20 minutes out of every 2 hours, and add in the few minutes to clean and store and maybe go to the bathroom, it doesn’t leave time for much more than a catnap.  Again, more on the madness of pumping in another post, but it’s yet another master I have to serve right now.  Not enough hours in the day.

For the Ellie Update, she is doing pretty well.  Her progress is proving somewhat slow, and not as linear as her big brother and sister before her.  A lot more step forward, step back, step forward again.  She is on a nasal cannula with a very small amount of supplemental oxygen. They tried taking her off of it this afternoon, but she wasn’t maintaining good enough numbers, so it got turned back on.  She also has the dreaded orange NG tube down her nose to help her get the requisite volume of formula/breastmilk.  Some feedings, she takes the entire thing by mouth without incident.  And some, she gets tired or loses interest, so down the tube it goes.  Again, in an overall sense, she is gradually improving and generally increasing the volume that she’ll take by mouth.  But it’s not a simple progression.  She does better one feeding, takes a small step back for the next, and so on and so forth.

Ultimately, though, the conditions of her discharge are pretty simple. She has to get off of the oxygen for at least 24 hours, and take her feeds well by mouth for 48.  Simple in theory, but completely impossible to predict when she’ll decide she’s ready to do it.  And so, we wait. We try to be patient, we try to be zen.  But we are bummed, too.  We wish we had the unknowable answers.

One more thought before I pump (again) and head to bed:

Enormous thanks to all of you who have reached out in the last week, through blog comments or emails or Twitter or whatever.  As you might imagine, I haven’t managed to find the time or the emotional wherewithal to respond to all of them.  But please know that I have read every single one, and am grateful for each and every one of them.  Thank you for sharing your stories and your thoughts and everything else.  It really does mean a lot.

Oh, I didn’t want to be back here. When I thought ahead to my full-term singleton, you can bet I was thinking about the logistics of rooming in, not remembering my way to the special-care nursery.  Frankly, I think anyone who has had direct experience with the NICU has mixed feelings. Obviously, we are grateful for the expert care that helps our babies get well. But nobody wants to be there in the first place. And I will admit that I had high hopes for redemption this time around, that I would get to do this the “normal” way.

But, like it or not, that’s where my baby needs to be. Turns out she required a fair amount of intervention upon her arrival in the unit. By the time I saw her an hour or so later, she had pinked up quite a bit. And while she was still coughing and spitting up some gunk from her lungs, at least she was doing so under her own power.

Friday evening, before I was particularly mobile on my own, the neonatologist came to talk to me about what they were watching.  Suddenly, it felt like there was a laundry list of ailments. While her breathing had already improved, she appeared to have some significant swelling/edema. She had a particularly deep sacral dimple that they wanted to get an ultrasound on. A few other items on the list made it seem like there was something unidentified, but not at all good, going on.

It was a worried, fitful night’s sleep for this mama, even before the constant checks from the nurses.

But morning came. The oxygen bubble was off of her head and she was breathing much more calmly and clearly. The ultrasound came back normal. I was able to hold her and attempt a few minutes of breastfeeding (not especially successful, but an attempt nonetheless).

Was I happy about the fact that she was there and not in my room with me? Of course not.  But I’m starting to readjust my view of our situation. The redemption I’d been hoping for is not gone, it’s redefined. It’s no longer about getting off to the great start that I “missed” the first time, but about taking what I learned and turning around a bumpy beginning.

I certainly don’t love being attached to the pump, but I’m trying to embrace it as a tool, a bridge, to get me where I want to go. Instead of just resenting every minute I spend with it. I’m confident that my milk will come in, and even if the first weeks are a hassle of nursing and pumping and supplementing, I can do it. It doesn’t last forever.

I don’t yet know, for sure, whether or not Eleanor will come home with me when I’m discharged on Tuesday. Am I hopeful? Yes. But if she has to stay an extra day or so, I know it isn’t the end of the world.

I’m finding some second-timer zen about the whole thing. Oh, I’m not without worry. But I know that all of this is temporary.

It also helps, of course, that Eleanor had a great day today. The story has only improved in the 12 hours since I started writing this post.  She is now in an open-air crib instead of a warmer, has weaned completely off of oxygen and her IV, and is taking feeds by mouth nicely.  The swelling is noticeably better.

All we need now is a nice long stretch of being stable. Stable breathing, good blood sugar, continued good feeding, and no drama… we may yet have a ticket out of this joint.

The road to redemption, indeed.