But then I think of myself at that time—in my postpartum hormonal fog, complicated by grieving and reorganizing my expectations. I think of myself, hauling in a big rollaround scrapbooking organizer and sitting in the vinyl chairs under the windows day after day, of the cardiologist coming in at 10a.m. and laughing at me: “Have you moved since yesterday afternoon?” Especially, I think of the moment when someone had come to visit, and the alarms started going off and the room started filling with people trying to get my daughter’s sats (blood oxygen saturation) to leave the 40% range and get back to something halfway acceptable, like 85% (95 is normal). I said, “I don’t need to see this,” and took my guest to the visitors’ room, where we chatted unconcernedly for twenty minutes. We’d been through this drop in sats so many times, and not once had it ever occurred to me that when an ICU room fills up with people, that’s a very bad thing.

I wonder now if God was shielding me from full understanding. I was a nursing mom—even if all the milk had to be pumped and fed to her via NG tube. The stress of the hospital stay was enough; could I have held a milk supply at all if I’d had to cope with the fear of losing my daughter?

Two years later, Julianna was in the P-ICU again. They never indicated that she was in danger this time, although they didn’t pretend that pneumonia was no big deal, either. For several days of that hospital stay, the room next door was occupied by an infant—all but newborn. For the first three days I never saw a parent in the room. I never asked, because I knew the staff couldn’t tell me anything, but the only things that stopped me from begging to go in and hold that baby were 1) I already had a baby living with me in the P-ICU, and 2) my daughter was gravely ill, and I didn’t want to pass it on.

I never knew why that child was in the ICU, and I’ll never understand why the room remained so bare. When you’re in the hospital for an extended period, the room grows decor: coats get brought on a cold morning and tossed on the windowsill, where they get left behind when the weather warms; books wander in and never seem to get taken home. Some of the kids who were out on the main floor, staying for months on end, had posters on the wall and curtains on the windows; you could barely navigate the floor from door to hospital bed. But this room, the room next to Julianna’s in the PICU, the room with a newborn child—this one was nothing but a hospital room with a baby in it.

There is a certain drama inherent in crisis points. Once in a while I find myself feeling nostalgic for those hospital days, missing the intimacy with the wonderful doctors and nurses there, and wondering when we’ll be there again. Then I shake myself and think, Are you kidding? And I hastily thank God that Julianna seems to have outgrown her propensity to land in the P-ICU on a ventilator.

I pulled Alex out of school 15 minutes early so he could have the chance to be on the radio with me. The sky hunkered down black over our heads, but the rain held off until we were pulling out of the school parking lot. Then the heavens opened up and dumped. On the interstate, we managed to outrun it. Barely. It was a pretty wet walk from the car to the hospital, but we did manage to get under shelter before the downpour turned green and impenetrable with mere human vision.

I arrived at the radiothon with three kids under 6 and the promise of help from the organizers. In a word, it was hysterical.

Christian's reaction to this picture? "I'm telling you, we're gonna have trouble with this one!"

I did four interviews—eventually. But first, we sat around the couches and watched the first major severe weather of the year roll by, complete with a tornado warning, which moved the whole shebang into the hospital cafeteria for fifteen minutes. The kids passed the time eating crackers and fruit snacks provided by the staff. Fortunately, the twister went south.

It took me an interview or two to warm up. Alex ran the Batmobile on the floor, up the backs of the rollaround plush chairs, and around the back of the sound boxes lying on the tables—and then perched on my leg to talk into the microphone, so he could say he’d been on the radio, too. Julianna just wanted to spin the chairs around and around. Oh yes, and investigate the contents of various purses and laptop cases left on the floor by people who clearly were not aware of her presence in the vicinity. (What were they thinking? ) Every deejay commented on how vivacious she was, by comparison to the story I was telling of a child on the verge of death (which sounds really melodramatic, but read the history and you’ll know she really was).

Christian tells me the mascots HATE having their tails pulled. T.J., my apologies.

Nicholas colored with Miss Missouri. T.J. (“Truman Junior”) showed up between interviews two and three, and my kids went crazy. They beeped his nose, hugged him, played with his tail. During the second interview, the kids started fighting, and I had barely started the fourth when Alex spotted plastic cups of candy on the table in front of me. “MOMMY!” he yelled, just as I began telling our story on live radio, “THEY HAVE ROLOS! CAN I HAVE A PIECE OF CANDY?” Hearing the word “candy,” the other two came running, and I was reduced to making jokes, trying to hold a microphone and unwrapping candy for three greedy pairs of hands. “I don’t think anyone’s eating dinner tonight,” I joked. And then Alex turned to me and whispered, with all the glee of a small child uncovering something scandalous, “Mommy,  guess what? Truman’s a PERSON!”

“How did you decide that?” I whispered back.

“He has a zipper!” Alex said.

So begins the unraveling of all the mystique of youth!

We were supposed to be on the radio in the bottom half of the 3:00 hour. I figured we’d be home by 4:15, 4:30. Instead, we limped into the house five minutes ahead of Christian coming home from work. (And they sort of ate dinner, but not exactly.) But it was worth it when my next door neighbor asked for my autograph the next day.

(This Motherhood Moment shared with mama Kat’s Writers Workshop.)

Image via Wikipedia

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So…Christmas gifts. We are not terribly fancy people, and I don’t believe in buying a gazillion toys, b/c they’re already scatterbrained and unfocused with the toys we have. And last year, we got stuff for Julianna, which she has now ignored for 11 months in favor of reading books and listening to music. And Nicholas has just discovered how much he adores all of Big Brother’s old toys. He needs nothing. What should we get these two for Christmas? Any ideas?

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I’d really like to know how Simcha does it. I’ve come to the conclusion that she’s simply a lot funnier than me. As are all of her readers. Take the time to read this one, folks–and all the comments. Christian and I learned what awaits us when we have more than one verbal child–and some absolutely friggin’ hilarious coping strategies!

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Those of you who see us live & in person may not be quite so interested in this, but for those who are interested you can actually see Julianna in motion (wow! A VIDEO? We MUST be famous now! ). She is not the star of the video; that honor goes to her little blond classmate–but you can see Julianna in the red shirt.

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This novel-in-a-month business is kicking my derriere. But it’s exhilerating. I’m finally getting into a groove. Okay, now that I have that off my chest…moving on.

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Nicholas is unbelievably cute. Those big brown eyes slay me every day. Even when he’s being bad! (Like throwing graham crackers on the floor, like he just did.)

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How is it that women who pick their kids up from school, almost to a person, look so snazzy, even when they’re wearing sweats? And why do I always look so dumpy and slobby? Was there some class in “how to present yourself” that I missed when I was running around climbing trees and jumping off hay bales? (Um…did I just answer my own question?)

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I’m so proud of Alex. He had a spat with a playmate the other day, and came to us deeply disturbed by something said playmate had said about another of his friends. Christian had a talk with him and helped him develop a “script” to use in talking to the playmate. Today, Alex went straight to the child and said how he felt, calmly and coherently, and told him not to do it again. I wanted to ask, “How did you do that with no apparent anxiety about confrontation???????” But aside from the fact that he would have no idea what I was talking about, I knew that that is not a good question for a parent to ask a five year old!

BONUS TAKE (because we all know I have so much to say…):

It has now been a year since our last hospitalization with Julianna–and eighteen months since her last major (read that life-threatening) one. Even though it seems a little like tempting fate to mark this milestone, I think it would be ungrateful not to!

Click on over to Conversion Diary to see what’s on everybody else’s mind this week!

It was a long time before I looked at homemade pizza the same way again.

Julianna was five and a half weeks old that day, mid-March of 2007, and one very sick little girl. Not nursing. Everybody else was recovering from the worst cold ever. We’d been to the doctor, who told us it was viral and we had to ride it out. That was Wednesday. On Saturday, when we made pizza, I very nearly lost it. Shaking my fist at Heaven out in the back yard. Julianna did not sleep that night, and at last Christian took her out on the couch. That necessary distance gave me the objectivity to say, If she doesn’t nurse by morning, we need to go the ER.

At 7am. that Sunday morning, I left the boys asleep and took her to Urgent Care. By ten we were in the hospital. By the next morning, we were in the P-ICU:

It was RSV–very dangerous for a child with a heart condition. For more than a week, I pumped around the clock and brought it to the hospital, where I sat in her room from 8-4:30 every day, except when Christian relieved me. They told him to prepare himself. Thank God, he didn’t share that with me until after she was past the worst danger.

Her baptism was scheduled for 5:30 Mass on Saturday, St. Patrick’s Day. Considering her condition, we weren’t about to postpone it! By Saturday she had stabilized, and they were close to weaning her off the ventilator, so they allowed us to bring the heirloom gown and gift blanket into the PICU, and they dressed my sedated baby for her big day.

We received so many gifts that St. Patrick’s Day–not the least of which was the hospital calling a professional photographer to record the occasion for us. The picture below is very telling: the evidence of the beating my poor dehydrated newborn took, the loss of multiple IV lines.

Her godparents got caught halfway here in a snowstorm and had to be piped in by cell phone. Also note the expression on my face. By this point I was calmed down, no longer afraid that I was going to lose my daughter. But I must have been having one of those moments, because that is the look of a mom on the verge of tears.

But the greatest gift came afterward. That was the day when I got to hold my newborn baby for the first time in over a week.

Before that, she had been so unstable that merely shifting her from one angle to another would set off an “episode” where her oxygen saturation would fall to the forties or fifties.

We came home on the first day of spring, bruised souls, profoundly grateful for the gift of our family. Less than four months later, we were in a different PICU, this time at Cardinal Glennon hospital in St. Louis. This time, it was scheduled: open-heart surgery.

I went by myself and stayed at the hospital for four days, until we came home with a fragile, but fixed, heart under our care. We had one more scare that fall, but then the year 2008 was blessedly free of hospital visits. We thought we were in the clear, until May of 2009, when we nearly lost her again.

In some ways, this stay was easier. We knew the routine; they reassured us. But I had another newborn now, and a preschooler, and a writing career taking root, and I felt tired all the time. But all that is detailed in May of 2009. I won’t revisit it all now.

When Julianna came home twelve days later, she wore a nasty white bandage on her neck, from having a “central line” sewn into her jugular (I believe). She smelled like the hospital for weeks afterward. These days, even the smell of her glasses–that same plastic, acrid smell–is enough to bring the whole thing back again. And forever she will bear the marks: three tiny white scars in a triangle on the left side of her neck.

I conclude this long storyby sharing a picture that still makes me relax inside:

When your children come home–even if they’re too weak to do more than sit on the driveway and push a toy back and forth–that is a sweet, sweet moment. So allow me, having sat with my child through six (seven? I’ve lost count) hospital stays, to to climb up on a preacher’s soapbox  and urge you:

Cultivate an attitude of gratitude for the everyday pleasure of having your family at home.

1. Very sweet comments on my Ash Wednesday post…if only I lived up to my own vision of Lent on its first day! Ash Wednesday was a day full of whining kids, a headache, and eventually, a volcanic eruption. From me, not from the kids. I don’t think I’ve had such a bad day in a very long time.

2. Michelle at Graceful shared a video that sent me rocketing around YouTube earlier this week, and I just have to share. First, to give you some perspective, here’s the snowplow train.

3. And now, see what happens when it gets stuck.

4. Julianna actually needs clothes this year! I actually get to go SHOPPING! I’m so excited! Oh yes, and–NICHOLAS HAS CUT HIS FIRST TOOTH! (Finally, considering he’s ELEVEN MONTHS OLD today. Wow, where did the time go?)

For the rest of my Quick Takes, I’d like to reflect on how nice a visit to the hospital can be…

5. …when you get to arrive and leave again half an hour later, taking everyone with you.

6. …when you realize you’ve been away from the hospital long enough for them to do a significant remodel since the last visit.

7. …when your daughter smiles and cheers all the way through her X-rays.

Have a lovely weekend!

Well, the vaporizer failed us at last, and Julianna went to the hospital tonight. We managed to keep her home for almost 10 days, so that’s something. I was putting her seat in Christian’s truck tonight when I saw our neighbor, a respiratory therapist-turned-administrator, decked out in tank top & fatigues & knee-high combat boots (yes, it is that warm on November the 6th). I yelled for him to bring his stethescope over and take a listen. We must have looked a sight, out there on the sidewalk between our houses: the unlikely medical tech, the snazzy suit-and-tie daddy holding a baby in a cute turtleneck and no pants, and slobby Mommy in her sweats and T shirt.

Anyway, the point is, they went to the ER. The boys and I packed up dinner and overnight stuff for Daddy & Julianna and drove down to the hospital at 7:15. I had to wake Alex & Nicholas both up when we got there, and Alex was all a-flutter to go see the helicopter that flies over our house 10x a day. (Boys.) So we headed for the ER, and I said, “This way, Alex,” as we passed the east elevators. “We’re going to a different place than usual.” And I had to shake my head as the words processed: that we actually have a “usual” destination in the hospital!!!! AAACK!!!!

The woman who brought us back into the ER said, “What’s the patient’s name?” She looked it up and then said, “Oh! I remember her.”

As we turned the corner I heard her screams echoing around the ER, and I thougth, I’ll just bet you do remember her.

She was already on her second IV, and that one blew sometime shortly after we arrived…but they’d already given her steroids and clearly that helped, because she had WAY more energy for venting her unhappiness with the world than she had at 4:00 when I called Christian to come home.

However, Town House crackers and Colby cheese cheered her up considerably, as did the Gymboree play book that she can sit and look at for hours on end.

She’s improved enough already that we hope she’ll be home tomorrow, but there are no guarantees, so all prayers are appreciated. Especially since her big brother won’t pray for her to get well and come home. “I like Julianna in the hospital!” he said. “I like going to the hospital every day!”

Oh, Alex. You can still render me speechless.

4:15 a.m., respiratory distress; 6:15, seal bark, but giggly.  3p.m., greater respiratory distress; 5p.m., wolfing down food. Is she or isn’t she? Do I take her or not?

I consulted every person I could think to consult, from our next door neighbor (an RT-turned manager) to the nurses to the hospital itself, to no avail.. Christian even bullied his way (via phone) into the PICU to talk to the nurses who’ve treated her before. Eventually we decided that given her history, it was better to waste the time and the $50 copay and go to urgent care, even if they sent us back home, than be have to get kids up and rush to the ER in the middle of the night. So Alex went to the neighbors for his first sleepover, and the little ones and I went to urgent care. Four hours later, here we are, back on the 7th floor of “Julianna’s hospital.”

Previous hospital stays have begun with an element of stress, panic, and drama–which connotes a certain excitement. This time, when I pushed the double stroller into the elevator, it was with the choking, sensation of walking into an all-too-familiar trap and watching the prison bars are clank shut again.

But the first few hours have been almost absurdly low-key. Down at admissions, she toddled around, exploring the cushions in the waiting froom, the philodendron in the corner (which she called a “tree”). Then we came upstairs, and she sat in the crib, pointing at the bars, the plastic oxygen tent above the crib (not in use, thankfully). She’s wearing a pulsox, but no other leads. No IV. Definitely no tube sticking out of her mouth. She looks quite ho-hum about the whole thing. It’s almost as if she’s resigned herself to the fact that she will pay many visits to this big yellow brick building with a helicopter in front.

And this time, we’re out in front of it, to use our neighbor’s words. I pushed to get her admitted (who’d have ever guessed I would make that kind of turnaround?) so she’ll already be here when and if things go south. And because she’s already had a chest X-ray, they’re ready to start her on antibiotics for pneumonia. If we make it home in two or three days instead of weeks, I’ll consider it an investment well made.

9/15/09

One steroid, one antibiotic, one red-eye flight and two cranky kids later, we are all home. WHEW.

I close out this chapter of our lives by sharing some pictures.

Scenes from the PICU, 5-4-09 through 5-15-09, and homecoming 5-15-09

“W-well,” I stammered, wondering if my lack of patience was broadcasting clearly enough that he was reacting to it, or if I’m just a good enough actress to make him think I actually am patient. “Umm…thank you for everything you’re doing for her.”

Our family has now dealt with eight hospital admissions/stays in four years, beginning with the birth of Alex in 2005. Luckily, most of them have been relatively short and easy to predict: three C-sections (4 days), a burn treatment (outpatient), heart surgery (4 days) and an overnight for croup. It’s just Julianna’s two major illnesses that have stretched on and on, the ground constantly shifting beneath our feet, so that we can’t plan our life. And let’s face it, Christian and Kate Basi really do plan everything.

Time in a hospital is a very amorphous thing. You spend most of it waiting—waiting for the doctor to come in, or the other doctor to come in, or the results of the test to come back, or for the numbers to improve. Waiting for answers, especially to that most important question that no one can answer: “When do we get to go home?” For a few days, you can plan projects and be very productive, but after that, staring at the same four walls and the same beeping monitors numbs the brain. The hours slide by from one meal to the next, and despite being hyper-aware of the clock, you lose all track of the day of the week.

Being a patient (or a patient’s parent) requires patience. And a lot of it.

Until today, I never processed the double meaning of that word: patient. Right before Julianna turned the corner, I kept thinking, “What am I doing wrong here? Am I not praying hard enough? Am I using the wrong words? For goodness’ sake, we have the entire city of Columbia praying for her, and multitudes outside it as well. If that doesn’t qualify us for speedy recovery, what does?”

Now, having sat through Julianna’s second life-threatening illness, I realize that the first was no fluke. When she gets sick—not cold sick, but really sick, I mean—we’ve just got to expect that recovery is going to take twice as long as it ought to. Chances are, it’s in the chromosomes. Her RSV stay was ten days. This one is ten days and counting. I guess we just have to brace for that, and pray that she’s about through that age where kids get life-threatening illnesses.

Well, in any case, we expect to be moved out of the ICU sometime this afternoon. On to Phase II of the hospital stay. Please God, it won’t be very long!