Homecomings

I stumbled across a CD of pictures the other day, and I realized that most of you probably don’t know our (read that: Julianna’s) history, even though I allude to it often. So here goes.

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.

Published in: on March 30, 2010 at 6:56 am  Comments (3)  
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7 Quick Takes, vol. 69

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!

Published in: on February 19, 2010 at 4:03 am  Leave a Comment  

I Owe you A Resolution…

Julianna is home now. It looks (knock on wood) as if we are finally beginning to get the hang of this Go-To-Hospital-Do-Not-Pass-Go versus Save-The-Copay-and-the-Stress-By-Absorbing-It-At-Home seesaw. After, um, is it six hospitalizations now?, it’s about time, isn’t it?

Published in: on November 7, 2009 at 1:10 pm  Comments (1)  

Okay, so since everybody’s looking…

The hits are jumping skyward so clearly people are jumping over from Facebook, expecting updates on Julianna. :)

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.

Published in: on November 6, 2009 at 9:51 pm  Comments (2)  
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Crisis/Resolution

9/14/09

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.

Published in: on September 15, 2009 at 12:47 pm  Comments (1)  
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We Now Return to Regular Programming

How nice, to actually (gasp!) skip a day on blogging!

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

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Julianna PICU crib   Julianna balloons

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

Published in: on May 16, 2009 at 9:05 am  Comments (1)  
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Of Patients and Patience

He leaned on the foot of the crib, watching Julianna while he talked to me, just as he has for the last…well, I think it’s six days now (it’s all running together)… explaining why he had ordered the nurses to slow the process of weaning Julianna off dobutamine, and thus keep us in the ICU for another 36 hours. I sighed and nodded resignation, and he turned kind eyes on me. “Thank you guys for being so patient through all of this,” he said.

“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!

Published in: on May 14, 2009 at 2:56 pm  Comments (1)  

Almost There

When I came in this morning, the flow-pap was gone. After bath this morning, my baby girl’s cheeks are kissable again– IOW, not covered with tape and second skin and tubing. She has figured out that if she fingers her IV tubes and starts tugging, Mommy will pay lots of attention to her. Yee-haw. (Remember that this is no ordinary IV; it’s in the jugular vein!)

However, they’ve slowed the weaning of the blood pressure meds to every 12 hours, so now it’s mid-afternoon tomorrow before she’ll be off all her meds, and sometime after that before we get to leave the ICU. But Christian’s boss is back and gave him tomorrow and Friday off, so that will ease the stress. As does Meghan, our respite provider, who is sitting with Julianna outside of her finals schedule. And tomorrow night Christian and I are going out on a date.

It seems horrible to me to do such a thing. I think of my parents, who virtually never went out on dates, and I keep fearing that we will be judged for abandoning our children in a time of need. And yet the spousal relationship is first in the family–the origin of the children and thus, the most important. The transition period, caring for three while juggling everyday life, had already left us hanging on to connection by a thread. We expected the transition to be tough, and we had been living with our nose to the grindstone, barreling through as best we could and waiting for the craziness to settle into routine. It was starting to happen, too…and then Julianna went into the hospital.

Since then, what little conversation we’ve had has been logistics and progress reports; touch is nearly nonexistent, in any form. For a time, a marriage can handle that without negative effects, but for us, at least, that time is now past. So we’re going out, despite my uncomfortable sense that couples have survived far worse without thinking they have to go out on dates. Oh well. Count it as another blessing and get on with it already, Kate. Sheesh.

Published in: on May 13, 2009 at 12:10 pm  Comments (1)  
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Quickly

Yesterday, Julianna continued to scream at me all afternoon, refusing to sleep even though her little eyes kept rolling up into her head with exhaustion. (The nurses think it may be withdrawal from the monster doses of sedatives she was on.) It was annoying, but nonetheless, good news, because she had the energy to sit up and gripe. And it was all a show for Mommy’s benefit, obviously, b/c after I left for dinner, she stopped screaming and sat in her crib and played, and waved at her royal subjects whenever they stood outside her room.

Today the screaming soon stopped being so cute and instead began to shred my nerves, which is, of course, her intent. Like me at the doctor’s office last Monday, she’s trying to see if she can cause enough misery in her captors that they’ll let her go. If only it worked that way, honey. No, she has to stay in her ICU crib until she’s weaned from her blood pressure meds and her oxygen support has been significantly diminished–Thursday at least. Then we spend some unspecified amount of time out on the main floor before we finally get to go home. Well, that’s the breaks. At least I get to take her home. Someday.

I have not posted till this evening b/c  between the two of them–Julianna and Nicholas–I couldn’t sit at the computer long enough to accomplish anything. It kept shutting down on me. Hospital productivity is done.

Published in: on May 12, 2009 at 7:25 pm  Comments (1)  

Looking Up…tentatively

Julianna spent the entire morning screaming. Those who have ever heard her get mad at her brother know the sound I’m talking about. She did not take a break from the time I got here until after 1p.m., except for ten minutes when I think  she actually slept. Just one breath after another, AAAAEEEEHH! It wasn’t as bad as it sounds, because the torture device, pardon me, the bi-pap, muffled them almost completely. (If that tells you anything about this horrible invention.) Her heart & respiratory rates were sky-high. But it was an improvement nonetheless b/c it was MAD screams, not panicked screams like yesterday. However, mad turned to panic every time we messed with her death mask, excuse me bi-pap. The usual masks wouldn’t fit her head, so they put this hard rubber thing on her, with hard rubber straps that, by this morning, had caused a lesion on her left cheek from all the thrashing, and were well on the way to putting another on her right cheek. This despite the second-skin stuff they put underneath it to try to cushion her skin.

The X rays indicate that the pneumonia is more or less off the radar now, meaning it’s not really the issue; the issue now is viral, they think–it’s affecting her heart, which is not pumping hard enough, so fluid is backing up into her lungs. This means they have to keep her air support under pressure, so that the pressure in her lungs is sufficient to force the fluid out. Hence the bi-pap–that’s what it does; it seals around the nose & mouth  and forces the air in.

Anyway, all of this is simply to illustrate where we WERE, versus where we now ARE. I’ve spent little time online today b/c I’ve been caring for kids, and that’s probably a good sign. I had to push for some sort of cushion on the rubber straps, to protect her poor beautiful face, and I pushed for some sort of change in the regimen, because I was sure she wasn’t going to get better as long as she was screaming instead of resting.

Dr. Downs came in and we talked about options, and he called in Dr. Burny, who of course treated her all last week, and between the two of them they decided to take the bi-pap off again, and again, see how she did. And by now it was critical for her to have some food, b/c the feeding tube came out three days ago and she’s had nothing but a spoonful of jello since then.

That was two hours ago. She’s starting now to get agitated, but her numbers look pretty good, actually, so it’s hard to say whether she’s headed for respiratory distress again, or if she’s just pissy because she’s starting to feel just enough better that she can make everyone else miserable. :) She’s been signing “all done” all afternoon. The nurse said, “Maybe she just wants to make sure we know she’s done with the mask.” I second that…especially after she yanked out her flow-pap (the nose things) and signed “all done!”

We brought in water and ice cream at the same time. Practical Mommy, caregiver, had the water and got roundly rebuffed, while she lunged for Daddy, who naturally chose to carry the ice cream. Hmph. But Mommy redeemed herself later on by bringing cheddar cheese. :)

Her blood pressure dropped quite a bit last hour but now is coming back up, so for now, things look good. We continue to be profoundly grateful to you all, even though I guarantee we will never get thank you notes out. Sorry!

Published in: on May 11, 2009 at 3:15 pm  Leave a Comment  
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