First of all, to say thank you for all of your wonderful comments and wishes and good thoughts for Eleanor seems woefully inadequate. I am overwhelmed by your support. Thank you, a hundred times over. Her study is early this afternoon, and whatever it shows, I am hopeful that it will bring us a plan of action that will get her home.

Nearly one month in, the stress of everything is really wearing me down. Some of the time, I feel like I’m maintaining a decent amount of patience and perspective. But in the last few days, less so. I’m crying more. M and I are snapping at each other and yelling at the kids. Poor Daniel gets the brunt of it. Rebecca reads our stress and instinctively knows to back off. Daniel picks up on the stress, too, but his reaction is to become stressed, himself. More whiny, more sensitive, more crazed.  It’s not his fault, really. But it’s not pretty.

M and I have different primary stressors when it comes to Eleanor.  My main source of stress is simply the fact that she is not home. That I have to drive 10+ miles just to see her. That I only get to hold her for, maybe, an hour a day.  That there are so many hours that she’s just lying in her bed, with no one talking to her. We visit as much as we can. My sister-in-law is a resident at a neighboring hospital and tries to get over to hold her, too. The nurses are kind, and I know she doesn’t cry while everyone ignores her.  But still. I want her home. Period. I’ll deal with the rest as it comes.

M’s worry is more long-term. Sure, he wants her home, too. We both want to stop the insanity of the hospital commute.  But what keeps him up into the wee hours of the night is worrying about what the diagnosis will be, what it will mean for her long-term abilities and quality of life.  And, as I mentioned, he’s a worst-case-scenario worrier.  His strategy for coping is to play World of Warcraft until he is so exhausted that he can collapse into bed and fall asleep immediately, instead of lying in the dark and wondering.

And, in the meantime, it’s still not easy for either of us to have the constant presence of other adults in our house.  Which is not to say we aren’t grateful – oh, we are. So grateful, and so much of this would have been infinitely harder or darn near impossible without his parents and, now, my mom.  But it’s hard. And it’s hard on the grandparents, too. While we do need them, there’s a lot of down time. A lot of sitting around someone else’s house without much to do. Once again, this is when it would be nice if family was local – they could come over when there was a need, and then retreat to their own homes and their own lives when there’s not much going on over here.

My stress is really coming to a peak right now.  I’m worried about the feeding study and what it will mean. I’m constantly thinking about pumping and my adequate-but-not-improving milk supply.  And I’m in disbelief that, tomorrow, she will be a month old. A whole month in the hospital. A whole month, in a sense, missed.

I hope today will be a turning point, and a good one. If not progress, exactly, then action.  It’s time for her to come home.

I am throwing a hell of a party when she does.

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.