Hey! That kid looks like me!

Let's keep catching up, OK? I can't take much more of the sadness right now (being Tuesday and all, the day I reabandon my children ...)

So we were all the way up to Dec. 1. Time flies. The boy, sister and I went to see the girl as usual, but it started to snow. Heavily. So we headed out much sooner than usual.

Dec. 2: To see Ella:) 2 pounds, 11 ounces. They gave her a bath last night and didn't tell me :(
(**I'm all about keeping things chronological, but I need to expand on this AND get through more days, so I'll catch you up on this entry in a minute. If you're patient and hang out till then, I'll make good on the title of this entry, too. **)

Dec. 3: To see Ella:) Back to 2.10, but doing well. She's very active — she turned self around last night in bed:) Very alert holding her. They took NASAL PRONGS OUT!! for time outs:)

Dec.4: To see Ella:) Up to 2.13 Eye test — everything looks great:) Nasal canula out:)

Dec. 5: Starting back to work. To see Ella:) 2.14:)And after work to see her:) (Boy, that sucked, going back to work part time. Have you figured out yet that I might feel that way?)

Dec. 6: To see Ella:) 3 POUNDS:) Sign on Isolette:) Maybe 32 wks we'll start trying to nurse.


Dec. 7: To see Ella w/Dad:) 3.1 I can bring clothes! Next bed change likely to be to a crib, nurse says!

Dec. 8 To see Ella:) She totally pulls back head to check me out. (Editor's Note: I think I might've said this already happened. A thousand apologies. This is REALLY when it happened.)

Dec. 9: To see Ella:) (Jumping in again. This week, in my planner I've made notes about Ella's room. I'm getting it ready for her. Wow.)

**OK. Time to update the bath thing.

So when I showed up the next day, I found a small stack of pictures on the shelf next to Ella. I leafed through them, then realized they were OF Ella. I was confused, thought maybe they were from her dad ... then I realize they were of her getting a bath.

That rippling/ripping sensation wrenching down my gut.

I asked the nurse, and yes. They gave her a bath after we'd left because of the heavy snow. I was, to put it mildly, devastated. All along, they'd told me about how I'd get to do certain things with Ella, like nursing her, putting clothes on, bathing her. I was looking forward to every first I could have, since so many had already been stolen.

So, as I held my baby and the pain deepened, I choked out to the nurse my despair. I don't know if she understood the depth of my sadness, but she was my favorite nurse and very sympathetic. She made a note in the chart.

Not a single nurse involved ever apologized to me, though they later explained that giving a bath was just an automatic for them, that they hadn't even considered how it would affect me. Except, my response was, if it was so automatic, why did they take pictures?

So, I'm trying not to remember that my daughter's first bath happened without me, but there IS the photographic evidence. And with that evidence came a stunning realization: She LOOKS like ME!

Here's Ella:


Here's me (with my mom ... who I look like in many ways.)


And because you've been so patient, here I am again, a bit older. Ain't I cute? I think I'd do just about anything to have that bonnet and sweater again.

A letter to my children

Guilt is the cancer of motherhood.

No matter how astounding you might be, or be perceived as, if you are a mother you are never, in your own mind, good enough.

I, my children, am no different. I love you, I would die for you, but I will never see myself as good enough for you. I will go to the grave lamenting the mistakes I have made (and will still make).

Son, I am forever haunted by the time when the young you was going through a hair-pulling phase. One tug too many, and I reached out, yanked your own hair. You looked at me in shock and betrayal, your eyes welling. And I died a little, knowing how quickly I could harm. I am sorry.

And daughter, the failure to believe in your tenacity, the loss of understanding mired in shock of reality, stole time. It's not that I doubted you; only that I never knew to believe. I am sorry.

So much guilt. Take, for example, the issue of going back to work. Without exception, men who return to work are celebrated, supported. They are taking care of their family, providing. On the other hand, it's still common that women who return to work are shunned. They are failing their families, abandoning their children for their own selfishness. And if there is no choice, say, if they must work to support those children? Well, then they failed in securing a decent husbandly provider.

And as much as I discredit this diatribe, this little worm squirms disturbingly inside my conscious. Am I doing the right thing? Will I look back someday and berate myself for not doing more to secure the time with you, even as I am so conscious now of making this choice? I have tried to explain my choice to you, L, so I can comprehend if it's truly the right one. I need to know how I am affecting you, if I am ruining you. Isn't it enough to have my love? Why can't we live in a tiny apartment that costs far less instead of a big house I struggle to afford? Whose dream am I trying to capture?

And Ella, my darling girl. I struggle, struggle with the terrible fear that you will lose the sense that I am the most important person in your life. That you were inside me, albeit for a brief, naive time. That you are a physical flesh and blood creation of mine. That I am Mama and there is no other person as vitally rich for you. Will you lose that knowledge, as I leave you in the care of others? How do I always and forever maintain that unreplicatable relationship? Will I always be truly special to you, or will your smiles for others come to mean as much as the ones for me? Will our bond be weakened?

I love you both so deeply, and the loss I bore as a child — still struggle to understand and overcome as an adult — affects how I struggle to prevent any replication of the pain.

Leaving each of you is a weekly loss. I go to work angry, discouraged, full of self-hatred. I want to be with you, only with you, I live my life FOR you, and yet I abandon you? For that is what it feels like: constant abandonment. It's difficult to see it any other way when it's what I went through as a little girl. (You see? It's so easy to mess up your children! And, of course, it's always the mother's fault.)

I am so, so sorry, my babies.

The solace I can try to offer to myself, though it will never be good enough, is that I am full of you. I am madly in love with you. I am acutely aware of how extraordinarily lucky I am that life brought you into my arms.

L, as you grow the natural separation has begun. I remember when you were a baby how I'd sometimes come home from work and just hold you forever, smelling you, stroking your skin, rubbing my cheek on your silken hair, kiss and sing to you. You still snuggle with me sometimes, but it's not as often and I understand. You MUST move from me. But you will always be my beautiful little baby boy, even when the day comes I must tilt my head to look you in the face.

And Ella, your babyhood prevails but your maturation is fully under way. You are a person! Isn't that a silly thing to say? But I see you and I know you, and I am so delighted by you.

None of this is exactly what I wanted to say and all of it is exactly what I wanted to say. Words are my living but are inadequate in a mother's hands.

I am here for you both always, my love is everlasting and unconditional, and I know you will understand this all more someday when the cycle repeats and you become parents.

Thank you for the gift of you. You two are the purpose of my life.

Mama

We now interupt your regularly scheduled reading (again) ...

... so I can go off on a subject wholly unrelated ...

I want you to meet Edith Macefield, who died not so long ago.

Ms. Macefield lived a pretty interesting life. But it was the very end of it that we've come to discuss today.

You see, Ms. Macefield lived in her tiny house, with the glass animal figurines in the tiny windows, until the very end of that life. What's remarkable is what she did when change came to her block. To become her next-door neighbors, in fact.

You see, a multi-use structure was to be erected on her block, to consume her block in fact, and everyone else sold their homes to make way for it. Except Ms. Macefield.

She held firm to her convictions.

But the noise! people said. Eh. She lived through World War II. A little noise wouldn't be anything.

OK, said the developer. We'll give you a million bucks. Eh. No thanks. What would she do with a million bucks? She had everything she needed.

So Ms. Macefield lived in that tiny house as the bigger building went up around her. She kept her home neat and clean, and the yard well tended with its one tree, and she parked her old blue car out front. And that's where it remains, even after her death.

No one, even the construction foreman who befriended her, knows what is to become of the tiny house.

Ms. Macefield, however, had a will. What's in it is still to come.

Don't believe this story is real? Maybe you think it's just a version of the 1942 tale by Virginia Lee Burton, called "The Little House: Her Story?"

No. This story is true. Don't you believe me? How about now:

I take illegal drugs

I haven't really delved recently into the emotional aspects. I'm trying to catch up a bit, and racing through. But it wasn't easy, even with Ella's move to a lower-level NICU hospital. At this point, it was all still very numbing, and I suppose rather difficult to get a grasp of. Going into the experience, I was repeatedly warned it would "be a roller coaster." I came to hate that term, still do, I heard it so many times.

I was confused and still terribly afraid, and had no idea that I would be bringing this child HOME at some point. It was such a foreign concept, even as this child really became a person. The nurses would tell me later how worried they were for me, as every little thing resonated so deeply. I'd never been through this before. I didn't know what to expect, despite any kind of education. Part of me, I guess I need to admit, couldn't comprehend it someday would be over.

One thing that was happening had to do with my milk supply. Simply put, it was dwindling. It's a common thing with mothers of preemies. Although I was pumping, it wasn't the same. The body recognizes and responds to a baby, not a machine. So this potential loss was terrifying for me. Breastfeeding was something I could still preserve from everything that had been lost.

So I did a little digging, and discovered my options. Two drugs are known to promote lactation. One exacerbates depressive symptoms to the point one is ready to die. The other is not sold in the United States. Obviously, the first was out. So I turned to the Internet and found the second one, domperidone. And I ordered it. It came from Thailand. I had to wait. And fret.

So. Let's do some more racing through the calendar, and I'll even include a few photos.

Nov. 17 (first day at new hospital): Went with son, dad and sister to see Ella:) back on CPAP because they don't do high-flow oxygen; she's 915 g — 2 LBS!

18: To see Ella:) Held her but she's back to same issues with stupid CPAP. They're watching iron level, too. I feel so scared.

19: To see Ella:) 940 g, blood test excellent (EPO working!) Held her for a long time w/son


20: To see Ella:) 950 g. Back on CPAP after hard night.

21: Ella: doing well — esp. w/CPAP. 950 g.

22 (Thanksgiving, aka day after horrible root canal!): To see Ella:) On nasal prongs! 960 g. I her her for 1 1/2 hours:) She knows my voice — wakes up and listens and looks at me!


23: To see Ella:) 820 g (2 lbs. 4 oz.); held for hour 15 mins.; feisty — she peed on me while I changed her poopy diaper! :)

24: To see Ella:) 1040 g!

25: To see Ella:) Same weight. Held for long time. SO alert! Down to 1 liter oxygen.
(The SO alert note ... When I was holding her, she actually lifted her head and just stared at me! She's still 2 1/2 months before her due date, but this little baby girl LIFTS HER HEAD and looks me in the face, straight on, as if to say, "Hm. So that's what you look like." I was, to put it mildly, astounded.)

26: To see Ella:) w/son. To 1/2 liter oxygen; harder time, but good; 2.6 lbs.


27: To see Ella:) 2.8! Held long time — she watched me for long time. But having harder time again (like when first born). (Scratched out this day is a class my son and I were going to take called "Siblings are Special.")

28: No entry.

(But look at this tenacious girl!
They'd burrito-baby swaddled her, as usual, which she didn't care for.
So she somehow managed to stick her foot out the side!)


29: Dad over @ noon to see Ella:) Doing well — 2.9. She fountain pooped on me. Held her, too.

30: To see Ella:) 2.10. Held for long time. She's getting vocal!!

---
In the middle here someplace, just as my supply was down to almost nothing, the illegal drugs arrived from Thailand. And I started to take them. And they worked!

Time for a trip!

But first, one last picture from the first hospital:



I can just see her little brain ticking ... "Whoa. What is this thing here?!?"

She looks sad, though, I think. It's hard to see this image of a daughter who's still just skin and bones. And dark veins so visible through the tissue paper thinness of her skin. And eyes as big as her palms ...

sigh

So it's time for a trip. I promised, right? It's been 23 days here at this NICU, it's now the 16th of November ... although who's counting yet? My son and I have gone to see the seriously lame film "Mr. Magorium's Magic Emporium," when I'm buzzed and paged repeatedly (silently! I'm not one of those annoying people, but I do have a critically ill child and have no qualms whatsoever leaving my cell on.) I can ignore the calls no longer, so head out into the lobby to return them ...

And discover they want to move Ella to a new hospital! She's not in need of such a critical facility anymore, and our HMO wants her back to its own hospital. Not to mention: This is the place she was SUPPOSE to be born; we'll have a semi-private room (it has space for one other baby, but remains vacant until about the last couple of weeks, so we have loads of space); and it's much closer to home (no crossing the water/dealing with city traffic.)

I mull and I ponder and I worry, but ultimately agree to the transfer. Because of various issues, I am not able to ride across with her (this is the same journey I took, in reverse, when I was still carrying her.) So my son and I go to wait at the new hospital to greet her. And wait. And wait.

Transferring a NICU baby requires some specific attention, including a dedicated pediatric nurse trained to care for such tiny, critical creatures. She's located, but what's holding us up is the ambulance isn't made to carry the kind of Isolette Ella's in. So there's some back and forth, a new ambulance brought in, so and so forth, and they're on their way.

Ella does well in the ambulance. We get word when she arrives, a couple of hours late, but THEN my son and I have to wait while they make all of the adjustments in moving her in, about another 30-45 minutes. THEN we go to see our girl in her new digs.

While we're visiting, I note in my calendar, she sucks her pacifier while I'm holding it so I feel her gums on my finger:) Plus she holds my finger!

The boy and I get her settled, although it's more about getting myself settled since we're both exhausted and needing to go home, meet some of the new nurses and eventually say goodnight.

"Ella and Me"

"Ella and Me"

There once was two happy kids named L and Ella. They loved to play with each other every day. And they were brother and sister. Together they made a great team and made the world a better place for kids. Ella was a tiny baby and L was her older brother who watched over her. Ella had to live at the hospital for quite a long time because she was a preemie baby and very tiny. The nurses and the doctors helped Ella stay healthy and alive and kept her safe. L had to wait a long time before she could come home. He visited her often and read her stories so she would not be lonely. He thought that she was beautiful and loved her very much. To him she looked like a butterfly just coming out of her cocoon because her eyes were not open. He always wanted to be near her and someday when they were grown up he wanted to live next door to her and be her neighbor. Until then L would continue to visit her and he would tell other people about her and what it is like to be kept in the hospital. So that they will understand what it is like to be in the hospital and not be scared.

The End

These photos of awards and recognition for my son's story (brag, brag, brag as a mama should) are placeholders till I get a copy of the story up:) Story up 7/9/09.

Redefining humanity

Isn't it crazy? I mean, ALL of it. That my daughter was born into this world weighing less than a large container of yogurt? That within her tiny body was every building block, every miniaturized version of EVERY single physical element she will need to become ... become MORE?

Having Ella has changed my life, redefined my existence once again, in so many ways. My smug certainties teeter now, as I have been forced to re-evaluate just about everything in my staid world. What does life mean, even? When I come in to see this red being of skin and bones, ribs so starkly visible, to know everyone is working so desperately to continue this life? And then comes the point where it is made real, where this being ceases to be clinical and transforms into my daughter. That yawn and stretch was that very moment. And how magical to bear witness to it!

Of course, the guilt piles on, as I wonder how I betrayed her in my disbelief. I vow to never doubt this little child again, but how do I make up for ever doubting to begin? Even when I couldn't have begun to fathom how to believe.

There she is, so utterly human, enjoying this astounding stretch and yawn. If she is suffering, a thought I cannot bear, there is no evidence of this as she enjoys a most fundamental human pleasure. It's more than a mechanism of survival, more than an instinctual reflex. There is no possible way for me to explain how profoundly this affected me.

9. No entry.

10. To see Ella:) with Dad and son.

11. Ella: Nurse says she smiled. Had a good night.


12. To see Ella:) just me ... Got to hold my girl for 1/2 hour ! ! ! Took temp, changed diaper. She was hiccuping, too:)

13/14. Ella:) Increasing food to 1/2 milk 1/2 formula to increase calories. Also giving shot 3x week, 2 weeks to boost blood/iron (EDP?) I'll get to hold her more often after her weight goes up. She coughed 2x. I pumped there 1x.


15. To see Ella:) 883 g.; held her, changed diaper. VERY alert. PICC line removed yesterday. EPD shot yesterday for boosting red blood cells. Milk/formula is still 2/3-1/3 Doing well! Food tube through nose — her mouth is unencumbered now:) (I go to son's school for conference, which is the first time I read his story, "Ella & Me.")