Sara's Big NICU Adventure

2009-05-16T15:45:00.001-05:00

There's more Sara news here.

Liftoff!

2009-03-23T16:53:00.009-05:00

Sara donned the going-home duds mom knitted for her while pregnant. The anklets, as well as everything else, were slightly large.

Flashing some papal hand gestures for reasons she did not divulge, Sara bid adieu to the NICU staff as she was strapped into her escape pod.

Home at last, Sara snuggled with her nana.

As hoped, Sara's growth continues to mirror the changing of the seasons. Our neighbor across the parkway sported the first blooms in the neighborhood this past week. (Shows what a complete lack of chemicals can do for a garden!)

And here our story ends. Thanks for coming along, folks, especially with your support and optimism. Sara is negotiating with her writing staff at the moment regarding future blogs, but no projects or schedule have been announced. Themes under consideration include Sara's Road to Carnegie Hall, Sara's Path to The White House, and/or Sara's Big Moment in Oslo.

Special thanks to the paparazzi who provided some of the pictures in this blog.

....2....1...

2009-03-20T18:52:00.003-05:00

I know you can't see it very well, but that rainbow to the right of the street light, seen driving home from the hospital today, is the sign that Sara will be okayed for discharge tomorrow! Surgery went well... 2 hernias fixed, and she went back to feeding and being awake right on schedule.

(ahem)....3....

2009-03-19T20:13:00.002-05:00

This morning, Sara gathered her things, including her escape pod, and moved to the new (actually, exceedingly old) hospital for tomorrow's surgery. Preemies need to be strapped into their pods for an hour to be cleared for the launch for home. She thinks it's a silly requirement, but will do anything she has to in order to go home.

Who's that girl?

2009-03-18T20:48:00.004-05:00

Thankyou, physical therapist, for providing a big-girl bed with a musical mobile and mirror. All the better to see my chubby cheeks!

Hernia

2009-03-18T13:30:00.002-05:00

Small inguinal hernia needs to be fixed before she can go home. Surgery tomorrow.

....3....

2009-03-17T01:16:00.002-05:00

Sara hit the 4 lb mark today. Perhaps not coincidentally, doctors announced that the intended discharge date is..... Thursday. Sara celebrated by.. well, sleeping.

....4....

2009-03-15T23:34:00.002-05:00

Today's weight: 3 lb 14 oz

muuuuah-ha-HAAAAA!

The inventors of Chinese water torture have nothing on these guys.

...5...

2009-03-14T21:51:00.001-05:00

Today's weight: 3 lb 12 oz :(

....6....

2009-03-13T22:36:00.001-05:00

Today's weight: 3 lb 12 oz :)

....7....

2009-03-12T22:21:00.005-05:00

Countdown? 7? Does this mean Sara's going home in 7 days?

Welllll, no. Nobody knows the exact date. Let's review.

Before she can go home, Sara has to be able to.....

1. Keep herself warm outside the incubator. CHECK.
2. Eat on her own. CHECK.
3. Breathe on her own. CHECK.
4. Weigh at least 4 pounds. N/A -- since she's growth-restricted, they've waived this requirement.
Also. Go 5 days without apnea and/or bradys. CHECK.

So why can't she go home tomorrow??

Two words: Scope creep.
Doctors have now decided it's also important that she gain 25-30 grams every day.

*sigh*

Today's weight: 3 lb 11 oz

....8....

2009-03-11T22:50:00.002-05:00

Baby Beldar, having overheard doctors this morning announce that she could eat at much as she wanted, sucked down 15 oz this afternoon (her regular daily regimen has been 8 oz), promptly threw up about an ounce, then fell asleep.

Good times.

....9....

2009-03-10T19:58:00.003-05:00

Kicking back in the onesie her nana brought her, Sara was nonplussed by the results of today's eye test. It showed the first stage of retinopathy of prematurity, and calls for weekly check-ups. The first two screens showed nothing, so we're hoping this is an anomaly.

Now holding her heat well and nearly making it through feeds without falling asleep, she now has to make it through 5 consecutive days without "a's and b's" -- episodes of apnea (pause in breathing) and/or bradycardia (slowing of heart rate).

Today's weight: 3 lb 8 oz

Beginning countdown in......10....

2009-03-09T21:32:00.001-05:00

No more feeding tube!

Approaching Escape Velocity

2009-03-08T16:06:00.002-05:00

No more oxygen!

Progress!

2009-03-07T23:23:00.004-06:00

Sara gave a shout out to her friends in the blogosphere yesterday while visiting with her godmother, who traveled many miles to meet her.

Today's big news: She's now in an open crib! Doctors are no longer concerned with her growth rate, which has led her to a whopping 3 lb 8 oz. She's also taking full feeds in other ways than the feeding tube -- another of the four tasks she must master before setting out for home.

Happy day!

Slow growing

2009-03-03T10:47:00.004-06:00

In addition to prematurity and hyperthyroidism, it seems something else is at work in the growth-restriction department. Input and outgo are both being tested for calories etc., and Sara's liquids are being supplemented with extra calories. Since the new bed doesn't automatically adjust according to her body temp but stays steady -- and at nearly room temp -- she's wearing clothes every day in preparation for an open crib. Today's weight: 3 lb 2 oz.

Meanwhile, Sara sat around with the family and told a few jokes on Sunday afternoon. Only four visitors at a time are allowed in the NICU, so she did two sets.

Vaccinations

2009-02-28T22:59:00.002-06:00

Sara's otherwise-sensible doctors want to start her on multiple routine vaccinations. While she's in the NICU. While she weighs 3 lbs. Just because she's two months old. I asked myself what the chances were that she'd contract polio, for example, within the next two months, then said, "thanks, but no." Sheesh.

Naked No More

2009-02-25T21:23:00.002-06:00

Rocking a flowery onesie from the NICU's collection, Sara whispered sweet nothings in her Auntie M's ear this afternoon. She hit the 3 lb. mark today, hurrah!

Rapid respiration is keeping her from bottle feeds. Investigation turned up a small hole in her heart (in a different place than the other one), which they assume will heal itself, and is NOT the problem. Doctors continue to go 'hmmm.'

Movin' On Up

2009-02-23T22:35:00.004-06:00

Sara got a new bed today, which looks exactly like the old one but has fewer features and sensors, and is almost ready for an open crib. Daily caffeine has been stopped, and she's up to full feeding schedule and tolerating everything well. The physical therapist says she's got all the right moves for her age. Bilirubins are mysteriously high, but there are several potential explanations, and no panic. 2 lbs, 14 oz.

Doctors say they're still expecting her to depart around March 9, her original due date. They won't hold her back til she's 4 lbs, which is great, since that will take longer than two weeks!

Almost Wireless

2009-02-20T22:58:00.002-06:00

Yesterday saw the last of the latest round of meds, so they've removed her IV! Once she's breathing a little more slowly, they'll remove the feeding tube and start her on a bottle. Last to go will probably be the oxygen: Although it's nearly room-grade air, it's not quite there yet.

Smile

2009-02-18T19:00:00.002-06:00

What's so funny, I wonder? Any ideas?

Today's weight: 2 lbs, 13 oz

When's Hug-A-NICU-Nurse Day?

2009-02-15T17:04:00.002-06:00

Let's call it.... every day. Whenever you meet a NICU nurse, just give 'em a hug, on principle. The above is the sort of thing they do when the babies are asleep, just to try and brighten the stressful days of their patients' parents. They also leave little personalized gifts and signs.. always anonymously. The loving care they give to the peanuts who are deprived of the 24/7 oohing and aahing other newborns bask in -- and to the parents as well -- is truly wonderful.

Grow, baby

2009-02-13T20:32:00.002-06:00

Sleepy... and having long, lazy, uneventful days. Sara's now 2 lb, 8 oz.

Her personal knitting service continues to work on its math in order to arrive at a perfect fit.

No news is good news

2009-02-04T20:23:00.004-06:00

Nothing exciting... except that she's almost up to 'full feeding' schedule, is tolerating all her feeds, and is slowly learning how to...uh... close her mouth.

Well, if *you* had had a big plastic yellow thing taped into your mouth for 4 weeks, you'd assume that OPEN is the natural position for your mouth, too!

Note to the knitting community: 'preemie' size is for giant preemies. Please consider specifying smaller sizes for smaller preemies!

Whew.

2009-02-01T23:36:00.002-06:00

Infection was e. coli. Is now gone! Spinal tap culture remains negative.

Must....get....out....

2009-01-30T19:01:00.005-06:00

Yesterday's escape attempt thwarted -- she made it out of the blanket-pod, but not out of the incubator's closed doors -- today Sara set her mind to disassembling the oxygen-intake equipment in her continuing struggle for freedom and independence.

She's on three different antibiotics until the bacteria found in her bloodstream is identified. In addition, according to yesterday's spinal tap, high white blood cell count in the spinal fluid MAY be evidence of spinal meningitis, though no bacteria was identified there. She's on meds for that condition as well, though civilians remain skeptical that the bacteria entered the spinal column.

One Step Forward...

2009-01-28T22:14:00.002-06:00

... half a step back.

Low white blood cell count and tachycardia (very fast heart rate) signal a possible infection, spurring yet another halt in feeding, yet another round of meds, and blood transfusion #4. Diagnostic blood culture comes back Fri pm.

On the bright side, Sara's now 2 lbs 4 oz, and she passed both her eye test and her second head ultrasound (checking for bleeding in the brain). She's joined the 1000-Gram Club!

Baby Aghast at Blago's Hubris

2009-01-26T22:24:00.002-06:00

A hitherto proud citizen of the Land of Lincoln, Sara listened to our governor's protestations on this morning's chat shows and, saddened by what she heard, took time out to reflect.

Happy Friday

2009-01-23T18:41:00.002-06:00

Off the respirator as of yesterday morning, and on only a minimal amount of oxygen. AND NOT DESATURATING AT ALL, THROUGH MORE THAN 24 HOURS! Ha!

Today was a good day.

Extubated

2009-01-21T17:41:00.002-06:00

Sara's now got a breathing tube down her nose, which she hates. If all goes well, she'll switch to a mere nasal cannula tomorrow.

Secondary infection: negative.
Hypothyroidism: positive, started meds.
Lungs: Continued improvement.

And Now We Are Two

2009-01-20T20:05:00.003-06:00

2 lbs, 2 oz!! FATTY!

However, too many desaturations, high white blood cell count and ‘poor weight gain’ lead them to believe she might be fighting an infection in her blood. ("In addition to the pneumonia? Maybe she's just fighting the pneumonia," I say. "But we're already treating the pneumonia," they say. What do I know? I studied English and philosophy.) Test results on the blood culture come back tomorrow pm.

Also, possible thyroid issue – might also be related to her fighting off a secondary infection (or, uh, could be nothing). They’re seeking the advice of thyroid expert to check whether/how to follow up.

Baby Finds 'Open' Button for Eyelids

2009-01-17T18:46:00.003-06:00

She's desaturating constantly (dip in level of blood oxygenation), but that's to be expected when one's lungs are below par. Doctors are happy with her progress.

:)

2009-01-15T17:13:00.004-06:00

Thumbs up on the stomach situation. No NEC! They say that the digestion problem was likely related to the pneumonia. Preemies don't multitask very well.

So far so good, on the lungs.

Pneumonia

2009-01-14T12:34:00.001-06:00

Yep. 10 days of meds. Thankyou, respirator.

Tummy trouble

2009-01-14T10:49:00.003-06:00

Sara isn't digesting the milk properly, and they think the problem might be necrotizing enterocolitis, a potentially lethal bacterial infection in the intestine. Test results won't come in til tonight, but antibiotics were started yesterday afternoon just in case. Meanwhile, she's got a huge belly and isn't happy.

*sigh*

Rock star!

2009-01-12T19:30:00.004-06:00

I know those sound like my words, but they're not... that's what her doctor called her, seeing how she's clearing all the hurdles in such fine style.

Sara's on continuous feeds now, weighing in at 1 lb, 12 oz, and the doctors think she'll be extubated by the end of next week.

She's started a 3-week regimen of nitric oxide (no, not nitrous), designed to prevent the long-term damage to her lungs that could result from spending such a long time on a respirator. Interestingly, it's essentially the same compound as Viagra.. only it stimulates the blood vessels in the lungs as opposed to the... well, you know.

Thankyou!

2009-01-09T19:19:00.002-06:00

Thankyou, everyone, for the good wishes. We're lucky to have a crowd like you.

Special shouts out to.....

Drs. JL, SG, and especially the esteemed MS for preventing Sara from being born at 24 weeks,
the lovely and helpful staff at NWM Hospital,
Mom and Dad for unbeatable chauffeur and c-section recovery services,
Auntie M for parking assistance,
Auntie K for pregnancy books,
Lisa for advice and counsel,
Faby for unflagging moral support, and
Eric for plowing the driveway, the walk AND the steps so I can get out!

PDA

2009-01-08T18:44:00.003-06:00

Today's echo showed that the ibuprofen was effective, and the hole in the heart has closed... so no surgery needed!

Played 'kangaroo' again today. It's a little jarring, given how incredibly light she is. But she has a mighty grip, so I was able to make a connection that way. :)

In the Pink

2009-01-07T20:03:00.000-06:00

On day 8, absent the lines in her belly button (which have been replaced by IVs in her arms), I got to hold her for the first time! They call it 'kangaroo care,' for reasons best known to the medical community. They untangle all the tubes and wires, tape them to the chair, and perch her on mom's chest to keep warm while also beginning to learn to regulate her body temp outside the 91 degree incubator. Just getting her out is a two-nurse production.

Day 10 -- 1 pound, 9 oz.
Echocardiogram showed PDA still present, so started 3 days of ibuprofen (along with Zantac to prime her stomach, since ib. has been known to burn through babies' stomach lining).

Day 11 -- Chromosome test results show that the abnormality was limited to the placenta, and not present in her! Hoorah!

Her anticipated departure is March 9, the original due date (and Chaica's birthday!). But really, it depends on her ability to do 4 things:

Keep herself warm outside the incubator.
Breathe on her own.
Eat on her own.
Weigh at least 4 pounds.

I hope her growth and bloom will echo the weather's progression, in which frozen brittle stasis will give way to tender buds and sweet-smelling air.

Meanwhile, I've been off pain meds for 3 days now and am feeling fine, thankyou.

Arrival

2009-01-07T19:31:00.000-06:00

Sara Chaica Smyth H____ arrived at 6pm on December 27 via c-section at the ripe old age of 29 weeks, weighing in at 1 pound, 6 ounces, and 12 inches long. 'Sara' is her great great grandmother (paternal). 'Chaica' is her great grandmother (paternal). 'Smyth' is her great grandmother (maternal).

The early birth was forced by a failing placenta -- full of blood clots, as it turns out, thanks to a chromosomal abnormality -- which prevented her from growing at a normal rate. Daily biophysical profiles (ultrasounds to check her oxygenation, movement, and amnio fluid) started at Thanksgiving in anticipation of early delivery, so although it was not scheduled, it was not unexpected.

The first week was full of awful, albeit typical of preemies, surprises:
* An underdeveloped liver led to high bilirubins and jaundice. 7 days of blue-light therapy, for which she donned chic little cloth sunglasses and bared her butt.
* High levels of procrantin (?) led to worries about kidney function. OK as of day 10.
* PDA (hole in heart) suspected. If it doesn't close on its own, meds and/or surgery will be needed.
* Routine scan for bleeding in the brain is negative.

She was bright red and feisty, blonde and blue-eyed, with well-defined biceps due to an utter lack of fat.