A big part of it was anxiety over bringing home a baby with special medical needs. She was still recovering from surgery, little wounds healing, and this new piece of hardware on her belly that I was, to be honest, afraid of. What if it gets infected? What if it gets clogged? What if it falls out?  If she cries too hard, will that hurt the internal stitches? What if she has to go back to the hospital?  It was awful. I am not a generally anxious person, or parent, by nature. I’m not used to coping with this kind of stress on a daily basis.

But we had checkups with the pediatrician, and twice-weekly Visiting Nurse care. I started to understand what was normal and what were red flags. Ellie gained weight, I got used to the equipment, and I stopped getting the heebie-jeebies every time I looked at her belly.

Still, I got that sinking feeling in the pit of my stomach on a fairly regular basis.

It should come as no surprise that I have found it difficult to be around other babies.  I had no shortage of pregnancy buddies – it seemed like half of my friends and cousins were pregnant at the same time as me, and new ones keep announcing.  It’s incredibly hard  to watch each of them in turn bring home their healthy babies at two or three days old. To see them breastfeeding with relative ease. To watch their babies hold their heads up straight and put weight on their legs and take a bottle.

What I found more surprising, though, is my visceral reaction to seeing pregnant women, whether friends or strangers.  Each time it’s like a PTSD flashback. The emotional trauma of Ellie’s unexpected NICU stay and medical issues has applied itself, somewhat retroactively, to my pregnancy. The anxiety that I felt at the end of my pregnancy, between the polyhydramnios and the low-side-of-normal fetal movement, is now the only thing I can remember. Like a big flashing WARNING SIGN that I didn’t realize at the time.  And I see other pregnant women and I remember that I didn’t know, then, what was coming. I couldn’t have, really. I had a few odd symptoms, took tests, and everything seemed OK. Or, at least, unexplained. Just one of those things.  Now, to be overly dramatic, all I see is the truck that I didn’t realize was about to run me over.

I am, to put it bluntly, jealous. Achingly jealous of all those healthy pregnancies and “normal” babies. How many babies get discharged from the hospital with their mothers? 95%? 98%? Why never mine? Was it really that much to ask? I have days when all I want to do is shake my fist at the sky, curse God or Fate or Luck or Statistics, and throw myself a pity party. I am so mad, so jealous, so upset to know that I’ll never have that experience. I want to hide from my friends and my family and their “normal” single babies.

But it doesn’t last long, and that’s how I know we’re going to be OK.

Yes. This sucks. It sucks a lot. It sucks that Ellie had to have a G-tube, sucks that we might be looking at some moderate-to-significant developmental delays. It’s an uphill climb, for sure.  But to paraphrase my friend Amy, spending time at the Big Hospital gives you a certain amount of perspective.   You look at the kid to your right and think, “what are you even doing here? What do you have, a sniffle? I have it SO MUCH WORSE than you do.”  And you look at the kid to your left and your heart sinks and you think, “thank God I don’t have to worry about that.”

Some parts of this suck, but it could be a whole lot worse in a lot of ways.  As the weeks go by, as I get used to Ellie and her needs on her own terms, the intensity of how hard it is to see other newborns or other pregnant women is tapering off. It’s still there, and it might always be there. But it fades a little.  I don’t actually want to withdraw from my friends. It sucks to have a big part of my day-to-day vocabulary be foreign to almost everyone, but instead of pushing them away, I will try to draw people in. I don’t want to hide myself or my daughter or what she needs. And I don’t want this to come across as being about Ellie, herself. She’s a sweet, wonderful baby. She didn’t choose for any of these things to happen. She doesn’t know any other reality. She needs what she needs, regardless of how it might be similar to or different from any other baby.

So I hold my head up and I go about my day. I get used to my new normal. I work on accepting it for what it is and try to just shrug and move on when I start to think about what I had hoped it would be. It’s not that different from the early days of twin infants, when people would stop me in the grocery store and, wide-eyed, ask me how do you do it? Is there really a choice in the matter? We take care of our kids. This is our life. We love them and we do what needs to be done, whether that means juggling two newborns at a time or learning how to work a feeding pump. We just do it. End of story.

But I will always be a little jealous, a little wistful for the majority experience that I’ll never have.

The big kids were excited to have her home, then a little clingy and nudgy, but generally really good.  They actually seemed to settle down a little more when my mother-in-law left on Thursday. As much as they love Grandma, and they really do, I think they were at their breaking point with extra adults in the house.  We needed to get back to “normal” (such that it is).

In the meantime, we’ve had a week full of medical professionals. A trip to our pediatrician, visits from Early Intervention and Visiting Nurses, and two appointments (so far) with the chiropractor for yours truly. Nine-and-a-half pounds doesn’t sound like much, but when you’re jiggling and shushing and bending over into the crib, the back goes out fast.

We’re figuring out the g-tube feedings and medical supplies and what that means for Ellie and for us, and we even dared go out for dinner with all three kids on Friday night. It was a little nerve-wracking, but we made it through with no problems.

The youngest dictator decided to sleep very poorly over the last 24 hours, so this is as coherent an update as I can manage at the moment. Just wanted to let you guys know we’re here. Once again, enormous thanks to all of you for the comments, emails, thoughts, and good wishes. It means so, so, so much.

Ten weeks, two days.

The hospital always moves painfully slowly, but even more so on the weekend. The doctors who are on duty are wary to make big changes or decisions, in addition to their standard amount of nervousness about sending a baby home for the first time.

But despite a nasty 36 hours of crankiness and gassiness and almost NO sleeping from Miss E, by Saturday morning she was back to her usual calm self. Incisions looked good, tolerating feeds well. All the boxes had been checked.

When the poor, lowly intern came in and said the team was “on the fence” about discharging her on Sunday, I restrained myself from biting her head straight off.  We made our case, firmly. We pulled the mother-in-law card – she is staying with us right now and has 25 years under her belt as a pediatric ICU nurse. And you bet your ass I pulled the Mother’s Day card.

Finally, at 5PM Sunday, we left.

She is home.

But even that single piece of the puzzle is a little hard to explain. In a nutshell, she has never taken feeds well by mouth, and was aspirating liquids when she tried. In addition, she has extreme reflux, which makes it darn near impossible to keep much of anything in her stomach (and is also a nasty deterrent any time she tries a bottle – it all comes right back up). So, she no longer takes anything at all by mouth, and is tube-fed straight into her intestine, bypassing the stomach.  To that end, she is having surgery on Monday. She’ll have a g-tube placed to deal with the fact that she can’t feed adequately by mouth, as well as a procedure called a “fundoplication” to tighten the opening between the stomach and esophagus, to deal with the reflux.  I can barely express the degree to which we tried to avoid the surgical option, but here we are. At least it’s a ticket home. I’m sure I’ll have plenty to say about life with a g-tube baby in the weeks and months to come.

After all this time and the unbelievable number of tests she’s had done, Ellie has no single, consistent, comprehensive diagnosis. She remains, for the most part, a collection of unusual symptoms and characteristics. Now with a few inconclusive test results thrown in. While the feeding problems are our current focus, it’s entirely possible that they are simply a symptom of something else.

One of the things the doctors picked up on from day 1 is that she has very low tone. Not in the extremities – her arms and legs move pretty well and are reasonably strong.  No, she has low tone in her trunk. Even as a one-day-old newborn, she couldn’t pull her head up the way you’d expect an infant to do. That is still the case at two months old. While most babies are starting to gain some control over those big noggins of theirs (and Ellie’s is bigger than most), hers still flops backwards alarmingly and is only showing slow, small improvement. Is the feeding trouble related to this? Maybe, since the low tone also seems to affect the smooth muscle of her organs (like the stomach). Sure. Possibly. No one can or will say anything definitive.

The low tone seems to (maybe? we think?) be a neurological issue.  Or maybe a genetic one? Let me tell you something about genetics and neurology – these are two specialties that like to run LOTS and LOTS of tests, and then say, “well, we’re not sure. We’ll just have to wait and see how she develops.”  Yeah, that’s the best I’ve gotten over the last two months.  Of all the tests, she had two come back with some kind of abnormal result. She had an MRI that showed “simplified folding” in her brain, but neuro is hesitant to say what that might mean.  And she had a chromosomal study that showed a duplication in one small piece of one chromosome.  Genetics, shockingly, is also hesitant to make any grand statements. Both departments, however, are fascinated by Ellie and want to follow her as she grows. Lucky us?

The area affected in the MRI result might relate to gross motor or cognitive development. Maybe. The genetic duplication has shown some correlation to Autism Spectrum disorders or developmental delays. But we all remember the first lesson from statistics class: correlation does not imply causation. It’s possible our entire family has the same duplication, and you’d never know if you didn’t have this test done. Also, the two test results are not necessarily connected to one another.

I’m sorry, am I being vague? Well, yeah. Welcome to my world.

All I want to know is how this is going to affect my kid, and what that will mean for her life. But, absent a crystal ball, no one can tell me that.  My hunch? I think we will see developmental delays, but I have no idea in what areas or how dramatic. Will she walk at 9 months, at 19 months, or not at all? No idea. Will she have a feeding tube for six months or six years? No idea. Will she talk or read or do multiplication or make jokes? No idea.

She’s a big question mark.  I suppose you could argue that all babies are, that you never know what you’re going to get until it happens.  But when you start out your life with more than two months in the hospital, surgery, and a feeding tube, when you know you’ll need physical and occupational therapy from the moment you get home, and when neuro and genetics find you “interesting?”

Yeah, we’re in for a wild ride.

But let me not forget what is right with my sweet girl.  She is generally pretty mellow, and when she gets upset she is relatively easily soothed. She sleeps for nice stretches of time, even if those stretches are happening during the day instead of at night for the moment. She looks right at you, and if she’s interested, will track with her eyes and move her head to follow an interesting sound (or that pretty baby in the mirror). She passed her hearing test. She likes to chew on her hand. She’s incredibly snuggly.  And if you’re lucky, she’ll give you her sweet, sly smile.

Oh, the smile. It’s elusive. It’s fleeting.  But both my mom and my friend swear they saw it a few weeks ago (while I was in another room pumping, of course).  My husband saw it the next day. It took me a while longer, but I’ve seen it myself. Not just the one in her sleep, and not because she’s got gas. A real, honest-to-goodness social smile.  Not only is it a beautiful thing to see on her sweet face, but dammit, it’s a milestone.  Right. On. Time.

Ellie has her own plan. I just wish I knew what it was.

“How’s Eleanor?”

“Fine. The same. Great, actually. Except for that whole not-eating thing.”

The last 10 days have been the slowest yet.  We were transferred back to our local hospital to… basically… wait.  Just sit and wait.  While she was able to swallow thick liquids at her last swallow study, she did not show any actual inclination to do so. She’d take very small amounts from the bottle, and then her epic reflux would kick in and she’d spit it all back out.  She went on an NG tube, which puts the stuff straight into her stomach, but continued to have bad reflux. She got an NJ tube, which goes even farther than the stomach, putting the formula/breastmilk straight into her small intestine, with the hopes of avoiding the reflux.

It was with this NJ tube that we were sent closer to home, to give her some time to see if the reflux will improve on its own at all.  As for the day-to-day, there’s very little going on.  We go, we visit, we snuggle. We do a little occupational therapy for the major oral aversion she’s developed. We do a little physical therapy, since she spends so much of the day in the bassinet. I put some black & white art cards in her bed so she has something to look at. I sing songs and read Goodnight Moon. But mostly, we just hang out. We don’t get many updates each day, and we don’t expect them.

It’s been a week and a half of this… nothing.  And, sadly, we have no reason to believe the reflux is improving. Despite the fact that all of her feeds actually bypass her stomach, she still manages to gag and spit up at least once or twice a day.

So, this part may soon come to an end. We will be heading back downtown soon, talking with GI about surgical options like a feeding tube and a tightening of the stomach around itself to prevent reflux. Not exactly the kind of excitement I was hoping for to kick us out of these doldrums.  But, on the positive side, at least it’s action, and it should be action that will ultimately get her home.

One of these days.

Why yes. I’m still exclusively pumping. It’s been over a month, and here I sit. Half an hour at a time, eight times a day (down from ten, look at how reasonable I’m being!). Every bottle carefully sealed and labeled with the date and time, refrigerated until it can be delivered to the hospital.  It’s a glamorous thing, believe me.

I’m keeping up (just barely, for now, until she grows and they change the quantity again) with what she’s taking. I believe she has had 100% breastmilk for the last three weeks, and there may be a few spare ounces of buffer in the freezer at the hospital. I’m proud of that, and I don’t mean to belittle it. But despite the herbs and supplements and medication and tricks with the pump, I feel like I’m hanging on by my fingernails, just to keep up.

I was feeling particularly panicky the other day, wondering if my supply was dropping, or if I was actually keeping up, so I decided to start tracking. Oh yes, I made a spreadsheet. And while I absolutely see the crazy-making potential, I was already informally watching the quantities every time, anyways. At least now I have real data.

On the positive side, I was able to see several days worth of keeping up with her intake, with a little bit extra. That was helpful and a little calming. But I was also hoping to see some kind of pattern – maybe one time of day when I seemed to get more or less – so that I could anticipate it and feel a little less defeated when the inevitable “bad pump” happens.  Sadly, no dice. I cannot, for the life of me, discern any rhyme or reason as to why some times I get a lot more, and some times I get a lot less (and by “a lot,” know that we’re only talking a range of maybe 20-30mL, and yes I can still easily measure my output in mL).

If I was breastfeeding on demand, of course, I’d never know any of this. It would fluctuate day to day, the baby would eat more or less often, and that would be that. Not so with the pump. This way, lucky me, I get to evaluate myself every three hours, and see if I make the grade or come up short. And if you think this doesn’t have a major impact on my mood when I see the results, you’ve got another thing coming.

But, for now, I keep going. As I said before, it’s one of the few concrete things I can actually do and provide for Eleanor while she’s in the hospital. And while I do not think formula is evil (I have two healthy, brilliant, amazing kids who were almost 100% formula-fed), I do think that there is something particularly good about breastmilk, and I want to give her as much of it as I can.

But after more than 30 days of this routine, it’s still a big mystery to me.

Today was the repeat test.

She swallowed thick liquids, no problem. Still a little aspiration on the thin, but did great with the thick. She had a nice, strong suck and was able to get a decent volume out of the bottle on her own.

As of today, they started her on bottle-feeds, breastmilk with a thickener. Every three hours, they’ll let her take whatever she likes by mouth, and then give her the remainder of the volume by NG tube.  For her first one, she took almost half. Downright impressive when you realize she hasn’t done ANY for two weeks.

This is progress. SUCH progress, I can hardly tell you. To know that she is making these developmental strides, that even if progress isn’t lightning fast, progress is being made…

Sometimes you don’t realize the extent to which you’re holding your breath until you actually exhale a little bit, or how heavy the load on your shoulders is until it gets lifted.

There are still many steps to go. There may be steps backward, and the ones that go forward won’t be as big or as quick as I wish. She still isn’t home. We still don’t have a diagnosis for what underlying Thing is going on.

But this was a good day, and a very very welcome one.  Thank you for all of the thoughts, prayers, energy, and strength that you sent our way.  I was so proud of my littlest girl today.

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.

We still don’t know what Eleanor’s “Thing” is. We probably won’t for a little while, still.  But what I do know is that the main issue keeping her at the hospital instead of home is the fact that she is currently not taking feeds by mouth (which is probably a symptom of the larger Thing, but we don’t know the complete roots yet). She did a swallow study on her first day at the Big Hospital, and it showed she was aspirating both thin and thick liquids. She was not able to protect her airway when she swallowed.  Since then, she has been fed only by tube to keep her breathing safe, and they’re basically giving her a few weeks to see if it improves with a little more time to grow and mature.

This Thursday is her repeat study.  It is by no means the final word on how she will ultimately take in nutrition in the long-term. But it’s a big one to see if she is making any improvement, whether she can start taking some of her feeds by mouth, and whether we are one step closer to coming home.  If there’s no improvement, we may start talking about alternatives to getting her able to take nutrition at home, but I’d rather not go there. No, I want that stinkin’ yellow tube out of her nose, I want her to be able to fill her own belly, and I want her to come home. Period.

So.  If you have a moment, any spare thoughts, prayers, or general requests to the universe for her to wow everyone on the feeding team with her dramatic improvement on Thursday, that would be awesome.  It’s a bit of a long shot, but it’s not impossible.

Fingers and toes are crossed.

Oh, sure. I can go to the hospital any time I would like, I can hold her as much as I want when I’m there. I can change diapers, give her a little sponge bath, take her temperature.  And that’s all well and good, I’m glad she’s so stable that I don’t have any restrictions (other than the length of the wires and feeding tube) as to how I can handle her.  But changing diapers is not the thing I’m missing.  I miss having some real say on what her/our day is like. I want to take her for walks, I want to put her down for naps, I want to feed her when she’s hungry.  I want her home, in my world.  But, for the moment, that’s just not in the cards.

For right now, we wait and wait and wait. M and I are passengers on this train, with zero control over where it’s going and when it stops.  We are Ellie’s visitors at the hospital, instead of the ones running the show at home. The nurses are wonderful and all, but I can’t wait until I never, ever see them again.

Unfortunately, I don’t feel totally in control when I’m home, either. My in-laws were here for the last three weeks, and by necessity have been in charge of a lot of the things at the house for much of that time.  They flew home this afternoon, and my mom comes up tomorrow with a one-way ticket. Without the grandparents, getting downtown for our hospital visits would be about 100 times more complicated. With them around, the kids get some extra attention while we can take a little bit of time with our visits. Not to mention the fact that my laundry is always folded and the dishes are always clean (a clear indication that M and I are NOT the ones in charge right now).

But even when we’re home, it’s like I’m barely here. I’m always going upstairs to pump, or trying to rest, or coming from or going to the hospital. My time with Daniel & Becca is limited, and much of the daily grind of meals and naps and rules is left to someone else.  It’s a big adjustment for someone who has been in charge of ALL of it for the last 3.5 years. On the one hand, my inner control freak is screaming, “ugh, just move over and let me do it!”  But, then, I can’t be rude to the people who are loving my kids and keeping my family afloat. And, truth be told, I literally do not have the time and energy to do half of the things I would normally take care of. So I step back, I withdraw a little, to avoid conflict. And then, there I am again, in the back seat instead of driving.

It’s all temporary, I know. The time will soon come that I am completely overwhelmed by being on my own with three kids, I will wish for the days of constant grandparents. In the meantime, so much of this really is out of my control for now, and I need to just accept it. But it’s so counter to my natural state of being, it’s a daily struggle. I don’t like not being in charge, I don’t like not knowing what’s coming. It’s a little too scary and chaotic for me. I want to grab hold again.