… Sunshine, and rain.

If you live and love in Portland, you’ve been treated some remarkable weather lately. Days of sun and warmth have only recently reverted to our typical gray, spring mist.

You also may recall that several of those glorious, sunny days were punctuated by intense hailstorms.

Its been the perfect analogy for whats been going on with Adahlia for the past few weeks.

Currently, Adahlia is just about one week into her most recent transfusion. She had it last week, last Friday. It went safely. But as far as quick and relatively painless transfusions go, it did not go well.

The first part went fine, as her blood was drawn for labs by the very excellent Doerenbecher pediatric phlebotomists. She did not even cry- she doesn’t cry, anymore, when they stab her. (This wasn’t always the case. She used to scream as soon as the tourniquet was on. But for the last couple months she has only watched them, with a very grown-up, serious expression on her face as they draw her blood. It’s so uncanny, it’s almost freaky.)

But the phlebotomists have the needle in her vein so fast that the moment of puncture is less than a blink, and then there is blood flowing into a tube, and in a matter of seconds, its all over.  I lift her up and she seems a bit confused by the rapid goings-on, but is not upset.  One of the phlebotomists runs off to a cupboard and returns with a seahorse teething rattle.

“We saved this for you,” she says, as she tears open the package and hands it to Adahlia.

Instantly, it is in her mouth.

The clouds started to gather when we went up to get her vitals done; her weight, length, head circumference, blood pressure, and temperature. Sometimes, she completely loses it with these nurses, though they try their best to distract and please her with ribbiting frogs with flashing eyes, quaking ducks with blue lights for pupils. (Sometimes, I believe it over stimulates her; she is very sensitive to sound and light. Other times she likes it, or maybe she likes it in moderation.)

Anyway, this time, mostly, she was fine. She showed a little displeasure but let us flip her around as we went through the now-familiar routine. We hustled her out, half-dressed from the weigh-in, to the relative peace and solitude of what amounts to being a waiting room, but looks like your standard doctors examination room: bed lined with paper, sink, wall-mounted computer, rolling cabinet with supplies.

This is the place where every couple weeks, we await our fate. A pile of bags containing swaddled blankets (so she doesn’t lie on their treated hospital linens, which irritate her skin), a cooler with emergency milk, assorted toys and chewies (such as Sleepy Lion and the Gum-It), a baby book or two, my breast pump and its assorted equipment, and a couple books for Joe and I to look at when not feeding her, lying with her, playing with her, walking with her, or otherwise trying to distract her.

This is the moment where we joke around with each other and banter and talk about leaving the place and how no one knows anything and we blow raspberries with our baby and fly her around our heads and try not to be hopeful, but are, anyway. Hopeful that he doctor will walk in, and we can shake hands, we just go right back home. Hopeful that she’s getting better and not slowly slipping away anymore. Hopeful that whats about to happen next wont have to happen this time.

The IV tech walks in, and recognizes us. (It still makes me flinch to know that we are regulars; that our poor baby is here so often that we are known by sight and name.) She is confident and moves quickly into tying the tourniquet, searching for the best veins in elbow creases, on the top of her chubby little hands.

Adahlia is no fool. As soon as she sees the tech donning the purple gloves, hears them snap into place, feels the squeeze of the tourniquet and the crunch of the paper underneath her, her face contorts and she begins to wail, to struggle to get up, flexing her little baby abs and attempting a roll-over.

And this is the part I hate. This is the part where the tech sticks the needle in but fails to seat it properly in her vein, and searches around for awhile, the catheter sliding in and out, in and out, of my tiny baby’s arm, as she wails and writhes and I look past my reflection into the unimaginable depths of tiny bright, black pupils, panic squeezing them into pinpricks. This is when my right hand is across her chest to hold her down, my left index finger gripped tightly in her fist, and I say “shhh, baby, look at me love, dalia, breathe, listen to me, look at me…” while she fights and struggles and inwardly i am cursing that we have to hold her down, joe holding her legs, his face hovering above mine, which is practically brushing against hers, and dying of heartbreak because during so much of her young life she has been subject, over and over, to the traumatic sensation of being held down and harmed against her will.

And it is such a mighty will.

When she was first admitted to the hospital, at 6 weeks, and only 1.9 Hb (normal is 10.5), her blood levels barely life-sustaining, her heart enlarged with the strain of trying to pump her few remaining cells to all the everywhere they needed to go, oh, how she fought. Like a little tigress. It was baffling to the nurses where she got that strength; she should have been lying still, barely breathing.  Such a warrior.

But that’s a story for another day, another rainy day perhaps. There are a lot of them in Portland, in springtime.

Anyway, the tech eventually gave up, withdrew the needle, and I picked Adahlia up and consoled her. When she finally stopped crying, I had no choice but to set her back on the table while the tech searched for a good vein in her other arm and her hand. As soon as she felt herself being set down onto her back, Dahlia immediately flipped out again.  Eventually, the tech decided upon Adahlia’s beautiful, chubby little hand (this makes the third transfusion placed in the top of her right hand, I believe), and finally, thankfully, it was in, and secured with gauze and wrap, and my screaming baby again restored to my arms, fist wrapped like a little boxer, in neon green wrap with dinosaurs on it.  A baby boxer, exhausted from screaming but ready to put up a fight.

…or chew on her wraps.

In all, it was just as bad as last week, when we were forced to come up to have an IV placed to draw her blood, because the nurses were sure shed need a blood transfusion, and were hoping to give her just one poke. Well, that time, the tech went through her vein, do she could draw up any blood, and had to place the IV a second time… and then theres the matter of drawing put the blood, which is more time consuming with an IV. All this pain, all this struggle for her, and as it turns out, she didn’t need a transfusion. It could have been a single, quick stick by the wonderful phlebotomists, if only the nurses would have listened to us.

She simply cannot get a break. My poor little baby, little water dragon.

Well, enough of the hailstorms. I’d like to end on a positive note.  Though she seemed more uncomfortable than usual during the actual transfusion, it went well enough, in that it was safe.  She did not react allergically to the blood and hopefully, we have bought another 5 weeks before needing another one.

And that is the real sunshine here, the fact that Adahlia had not gone more than 4 weeks without transfusion since she was admitted at 6 weeks, and here she is, 9 months and a day old, and a week into her latest blood. Her energy is up; we play and dance and sing with her all day long.  She crawls and pulls herself up and walks along the couch.  She opens her mouth for pureed apples and raspberries.  She “brrrrrs!” and babbles and sings in a high screech, like a prehistoric teradactyl.  We kiss her cheeks and dance to the Beatles and she rocks back and forth ecstatically to the rhythms emanating from the stereo.  She buries her face in my neck, squeaking happily, bouncing up and down in my arms like a jackhammer.  She grabs both sides of my face and pulls it towards her, opens her mouth wide and places it on mine (it’s how she kisses).

Let us laugh in the sunshine and play in the rain. Let us dance to the thunder, our sorrow pounded by hail, until all that’s left is our soul, singing songs in the gale.