Lillian Grace Denby Update: 2/14/2011

Happy Valentine's Day!

Lillian Grace is 189 days old today; her adjusted age is 10 weeks. She’s been home from the hospital for almost 8 weeks!

Lillian’s Official Stats as of Friday, 2/11:

• Height: 59.7 cm (2.6 cm gain) 23.5 in
• Weight: 5330 gm (325 gm gain) 11 lb 12 oz
• Head Circumference: 39.4 cm (3.8 cm gain) 15.5 in

Lillian Grace visited Dr Rowland, her pediatrician, for her six month check-up on Friday, 2/11, accompanied by her mom and dad. Dr Rowland thinks she is doing very well. She holds her head up on her own and sits for extended periods (supported by a friendly hand), laughs and smiles, and coos, gurgles and grunts. She breast-feeds almost exclusively and is a serious, dedicated and noisy eater. Developmentally, she is right where she should be (perhaps a bit ahead in some areas) given her adjusted age (which is calculated from her due date of December 2nd). Lillian is currently waiting on an appointment with developmental pediatricians who specialize in follow-up assessments of neo-natal infants.

Of course, when you are a baby and go to the doctor for your regular visit, you are likely to get a bunch of shots: Lillian got several, including her first flu shot. She did not enjoy the experience; and she did not much enjoy the rest of Friday or Saturday. As often happens after a flu shot, she ran a slight fever, seemed a bit congested and was pretty lethargic. Just to be safe, Ashley and Josh took her back to the doctor on Saturday morning: her lungs sounded normal and, after a careful examination, the doctor thought that she was just reacting to the flu shot. By Sunday morning, Lillian felt much better, and was back to her smiling, feisty self.

My Eyes

For the past week or two, Lillian has been sucking on her own hands and arms, on her dad’s hands and arms when she can get to them, and has been drooling up a storm. Dr Rowland confirmed what we suspected: Lillian has begun teething and in the next month or so we can expect a tooth or two to erupt. Ashley is both excited and, as Lillian’s food source, just a bit apprehensive: the girl has a powerful jaw. Dr Rowland also thinks it likely that Lillian’s eye color will continue to be about what it is now: a dark blue with hints of gray and gold.

Lillian’s breathing continues to improve, we think; her pulse oximeter was out of commission for part of last week, so Ashley and Josh limited her to three-hour stretches on room air; after getting it going again (Apria walked Ashley through the procedures over the phone), they’ve increased her time on room air gradually: yesterday she breathed room air for 12 hours with no desaturations. She will see her pulmonologist, Dr West, on April 5th to determine whether she is ready to be off oxygen full-time.

Helping mom get the mail

One of the advantages of being off oxygen is that you don’t have to be tethered via cannula and tubes to an oxygen tank: that means that when the weather turns glorious, as it did Saturday, your mom can just put you in her K’Tan sling and take you out to check the mail or to sit on the balcony or to take a walk… kind of like Lillian’s just a baby!

Some of Lillian’s nurses and friends from Memorial Hermann Southwest NICU recently commented on the blog and sent greetings her way — she misses them (as does her family) and we promise to drop by soon to visit. No small part of the miracle that is Lillian is due to the superb care she received in her four and a half months’ residence there; it takes special people to handle the needs of premature babies and their families, and the people of Memorial Hermann Southwest NICU — doctors, nurses, techs, clerks, cleaning staff — are some of the best.

Thanks for your prayers and support!

Lillian Grace Denby Update: 2/6/2011

Full & happy

Lillian Grace is 181 days old today, and will be 26 weeks old tomorrow. Her adjusted age (calculated from her due date) is 2 months, 4 days. On Wednesday, February 9th, she’ll be six months old!

Cold weather delights Lillian Grace: bundled up and out in her stroller, she laughs when the cold wind blows on her nose; she thoroughly approves of shutting down the city of Houston for ice storms: that means she has both her mom and her dad home all day. Sometimes she is solemn and serious, regarding her surroundings and companions with a careful studiousness; but then, without warning, perhaps at the shake of a rattle or some silly utterance by an otherwise sober adult, she’ll laugh out loud or grace you with a glorious smile.

Me & Mom in the x-ray room

Lillian endured her VCUG test with grace and charm. The techs from the radiology team at Memorial Hermann Children’s Hospital were efficient and cheerful, even when a diaper-less Lillian did what diaper-less babies often do. The test showed no problems with Lillian’s bladder and urinary tract; it’s one in a series of tests she’ll have over the next few months as her kidney specialists determine how best (and when) to deal with her very small left kidney. After the VCUG test, we had her blood pressure checked to assess whether her blood pressure medicine is working; Lillian was pretty feisty when we went in, and the first reading was high, so we hung around until she was ready to eat; while she was gulping down lunch and distracted, the nurse got several good readings and Lillian’s blood pressure was just where we wanted it to be.

Me & My Dad

Lillian’s East Texas grandparents, Peggy and Keith, and her aunts Cari and Sylvia came down last weekend for a good visit and Lillian loved seeing them. All of the East Texans marveled at how big she’s gotten in just 6 months: this girl, who could have fit comfortably in one hand when she was born, is now a solid chunk of kid who requires two hands and a capacious lap. (Lillian’s kidney specialist and her nurse several times referred to Lillian as “petite”; at 11 and a half pounds, we say instead “big girl”).

 

Plumb tuckered out

Lillian’s breathing continues to improve: she’s still spending most of the day on oxygen at 1/8th liter flow, but for two to four hours a day she is breathing room air only, monitored by a pulse oximeter. Ashley now uses a clear thin adhesive film to hold Lillian’s nasal cannula in place; it’s easier and gentler to remove, so when she’s on room air, Ashley removes the cannula completely, and for a few hours a day we see Lillian without tubes, wires or tape — still a new and exciting experience for us. She’s got another visit with her pediatrician this week, and will see a neurologist in April, and she is waiting on her first appointment with developmental pediatricians who specialize in follow-up care for premature infants.

Nearly six months on, Lillian is a delight, a joy, a wonder… and cranky and fussy and exhausting: everything a baby should be.

Thanks for your continuing prayers and support!

Lillian at Home: 1/21/2011

 

Life is good!

A few minutes with no tubes or tape

 

 

Lillian Grace Denby Update: 1/18/2011

Pretty in pink

Lillian Grace is 162 days old today; her adjusted age is 6 weeks. She’s been home from the hospital for 4 weeks!

Lillian’s Official Stats (measured at Texas Children’s):

• Height: 57.1 cm (no gain) 22.5 in
• Weight: 5005 gm (271 gm gain) 11 lb
• Head Circumference: 35.6 cm (no gain) 14.0 in

Lillian went to Texas Children’s Clinical Care Center to meet her pulmonologist, Dr Barbara West, and to test her oxygen needs and lung development. She wasn’t allowed to eat after 7:00 am, so by the time she got into the pulmonology diagnostic center and got hooked up to the monitors, she was decidedly not happy. However, she got to eat at about 10:15 (much to the relief of her mom and everyone else on the 9th floor). After eating, she went to sleep and slept for most of the rest of the 4 hours of the test.

As a result of the test, Lillian’s oxygen flow level is now set at 1/8 liter (down from 1/4 liter). She’ll get a pulse oximeter in place of her apnea monitor, and she’ll start spending part of the day on room air. Her mom and dad will monitor her blood oxygen level using the pulse oximeter; if it remains above 93%, she’ll be able to stay on room air during the day; for now, she’ll continue on supplemental oxygen overnight. Over the next month or so, Ashley and Josh will work on slowly increasing Lillian’s time on room air. She’ll still have the cannula on for now, even on room air — removing the tape that holds the cannula in place too often would be hard on Lillian’s skin.

Lillian’s days at home have been blissfully uneventful (that bliss is tempered a bit by Lillian’s night-owl tendencies). Every now and then she bestows a radiant smile on one of her admirers, but otherwise she concentrates on eating, squirming and sleeping. She loves her nightly bath, and listens intently when someone sings to her or reads her a story. Her mom puts Lillian in her K’tan baby carrier while doing chores around the apartment: Lillian appears to be very interested in pie and cake baking. For forays outside the apartment (not many yet), the stroller is the carrier of choice: you can put monitors and oxygen tanks in the stroller; with sling type carriers you have to hang those off your shoulders when going out.

Thank you for your prayers and support!

Lillian Grace Denby Update: 1/7/2010

In my bouncy thing

Lillian Grace is 151 days old today; her adjusted age is 5 weeks and she’ll be 5 months old on Sunday! She’s been home from the hospital for 2 and 1/2 weeks.

Lillian’s Unofficial Stats (measured at home):

• Height: 57.1 cm (1.2 cm gain) 22.5 in
• Weight: 4734 gm (182 gm gain) 10 lb 13.5 oz (official: weighed at doc’s)
• Head Circumference: 35.6 cm (no gain) 14.0 in

Here’s what babies who are 5 weeks old like to do: eat; roll over; eat; hold their heads up; eat; babble and grunt; eat; pass gas; eat; sleep; eat; fuss; eat; stare at their parents; and, of course, they like to eat. Even premature babies who are now actually almost 5 months old but only 5 weeks past their due dates like to do these things; and these babies, who spent such a very long time in isolettes and hospitals, love to be held and sung to and talked to most of all — even more than they like to eat.

Sometimes I have to yell to get people moving

Lillian loves being at home. She can always find a mom or a dad (and once in a while, a grandparent) to hold her, sing to her, feed her, tell her a story — or just chat with her when she’s in the mood at 2:00 am. She’s got a floor gym with dangly things to touch and kick; a swing in which she can float through the air; a bouncy thing to rock and vibrate her to sleep. Three cats patrol the apartment, not sure yet what to make of the baby newcomer, though they suspect that Lillian’s tubes and wires are there just for their amusement.

 

On my mom

On Friday, Lillian and her mom made a quick trip to the doctor. Lillian appeared to be a bit congested and had what sounded like rattling in her chest. Happily, the doctor found nothing in her chest to worry about; the congestion is likely a result of irritation from her nasal cannula and of the drying effect of un-humidified oxygen. He suggested putting a drop or two of saline solution in her nostrils to help with dryness.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/29/2010

Me with Grandma Peggy and Grandpa Keith

Lillian Grace is 142 days old today; she reached 20 weeks on Monday.

Lillian’s Unofficial Stats (measured at home):

• Height: 55.9 cm (3.19 cm gain) 22 in
• Weight: 4734 gm (368 gm gain) 10 lb 7 oz
• Head Circumference: 35.6 cm (.17 cm gain) 14.0 in

Lillian is enjoying being home from the hospital: she’s got willing hands and laps whenever she wants them. She got her 50 foot oxygen tube extension the other day, so it’s very easy now for her to move around her apartment. She likes sitting out with her mom and dad and various grandparents, and the occasional aunt, uncle, cousin or friend (admitted only after swearing to being in good health, being checked for fever and after most have donned masks). On the day after Christmas, Grandma Peggy and Grandpa Keith drove down from Huntington (despite plumbing problems at home) and got to spend a good long time with Lillian.

With mom & my Finnish relatives

On Tuesday, her great-uncle Paul, great-aunt Nina and cousin Samuli visited with her. They are in town from Finland, so this was their first opportunity to see her up close and personal. Lillian talked with them for a bit, then decided to nap. Lillian was their third all-star siting of the day; they had breakfast at the Buffalo Grille and had the table next to Hunter Pence and Chris Johnson of the Astros; both were very gracious to the three visiting Finns (who may make up the entirety of the Astros’ Finnish fan base).

I have to be stern with my folks sometimes

Lillian is now sleeping regularly, so mom and grandmom are as well. She likes her car seat and stroller for napping, and enjoys lying on one of her mats on the floor and kicking with her legs and waving her arms about. She eats heartily and has a belch that would make a sailor proud. She occasionally pulls her nasal cannula out of her nose (one of her oldest tricks) but they are easy to replace and no one gets very excited.

Me & Grandma Nancy

Ashley is working on setting up January appointments with various specialists for Lillian and is finding navigating the medical bureaucracy to be challenging — and frustrating. Grandma Nancy is staying over at Lillian’s to help out (though her dogs miss her terribly). Josh is working hard over the holidays, but, somehow, when he gets home Lillian always ends up in his lap or bouncing on his knee. It’s peaceful and calm at chez Denby and Lillian is (mostly) a happy and contented baby.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/20/2010 Special Homecoming Edition

Leaving the NICU

At 7:00 am, as Lillian woke to her 133rd day of life, a tech from Pediatrix, our NICU doctors’ medical group, came and gave Lillian a hearing re-test (her left ear had failed the first one). She passed in both ears; the tech, remembering Lillian from her first test a couple of months ago, marveled at how big she’s grown. Then, as Ashley and Josh finished their breakfast after a night of rooming-in with Lillian, Bev, the NICU’s charge nurse, asked them if they’d like to take Lillian home in the afternoon. They said: “Yes.”

Over the next several hours, the NICU staff scurried about taking care of a variety of last-minute details — showing Ashley how to fortify Lillian’s milk and administer her vitamins, packing up all of Lillian’s accumulated possessions from four and a half months in the NICU, and writing reports and orders for Ashley and Josh to take to Lillian’s pediatrician and specialists. Lillian’s uncle Richard went over to Ashley and Josh’s (and now Lillian’s, too) apartment and waited for the oxygen man to deliver her oxygen supply. He brought and set up a large oxygen tank on a stand, and a supply of the small portable tanks for the times when Lillian needs to go out. Finally, about 3 o’clock, all was ready, and mom hooked Lillian to her portable apnea monitor and oxygen tank, put her in her infant car seat, loaded all her stuff on a NICU cart, and, with many tears and hugs, went downstairs, gave the car seat to dad, who loaded it (with baby) in the car, and mom, dad and baby drove home.

Anne, Nancy & Lillian

Once home, Lillian sat with her grandma Nancy, gazing at her new surroundings with some interest (and listening to the plaintive cries of the resident cats, who wonder why they are not allowed in the room to study the new arrival), while her mom and dad unpacked and put away her things. Soon the voracious eater wanted milk, and Ashley prepared her a bottle of breast milk (for the time being, Lillian will take about half her meals from the bottle, so calorie fortifications can be mixed with breast milk to make sure she keeps gaining weight) and grandma Nancy happily fed her. Ashley heard a knock at the back door and opened it to find Lillian’s great-grandmother Anne standing there. She told Ashley she wasn’t actually there and hadn’t really come to see the baby, but (according to reliable sources), she was indeed there and somehow managed to see Lillian despite her stated intentions.

Home in my mom's arms

So, Lillian ate and fussed and played (just as if she was in the NICU) and her mom rocked her to sleep and put her down in her portable rocking cradle. Josh had to go off to work, but grandma Nancy is staying over for a few days to help out; there is some hope that one or two among mom and dad and grandma will get some sleep, but certain experts think this is mere wishful thinking.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/19/2010

Talking to Grandma Nancy

Lillian Grace is 132 days old today.

Lillian spent her day getting ready for her home-coming this Tuesday. She began her morning with her first Synagis shot to protect her from RSV; she’ll get one monthly during the rest of this RSV season and all of next (RSV season runs October through April or May). The shots aren’t cheap (approx $900 per shot), but (fortunately) it’s covered by insurance (it’s easy to bash insurance companies — some of us have done more than our share — but Ashley and Josh have gotten very good support from their carrier, for which we are all grateful).

She rests from her labours...

Later in the morning, she took her car seat test: mom strapped her in her car seat in the NICU, and she stayed in it for an hour and a half. A baby passes the test if she has no bradycardias (heart rate drops below 100 bpm), no apneas (stoppage of breathing) and no oxygen de-sats (blood oxygen falls below 80%). Lillian passed: it’s another going-home goal met.

In the afternoon, her neonatologist and her nurse practitioner examined her: all is well. Dr Friedman thinks that her breathing progress is very good now, and predicts that she won’t have to be on supplemental oxygen for much longer – as little as 1 to 3 months, he hopes. Lillian’s great-grandmother Joan came to visit, and got to hold and feed her for a bit. Grandma Peggy and Grandpa Keith keep Lillian’s great-grandmother Denby in Beaumont up-to-date on Lillian’s doings; we hope that sometime in the not-too-distant future Lillian will be well enough to take a trip to Beaumont herself to see her.

Last Stop in the NICU

About 8 o’clock this evening, Lillian and her mom and dad moved into the Parent Inn for their rooming-in, one of the last things you do before going home from the NICU. The room is similar to a motel room, with bed and chairs for mom and dad, oxygen connections on the wall for baby and en-suite bathroom and shower. Lillian is hooked up to the apnea monitor she’ll wear at home; mom and dad get to practice being on their own with their baby — but the NICU staff are just a step or two away to answer questions or help if needed. They may spend Monday night as well, since Lillian isn’t going home until Tuesday, and the room is not reserved for anyone else.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/14/2010

 

Resting from my labors

Lillian Grace is 127 days old today.

When we got to the NICU this morning, we learned that Lillian had been cranky and gassy much of the night, though she ate well. She’d had a bath first thing in the morning and had fallen asleep right afterward; but she quickly woke up for mom and went to work on breakfast with noisy enthusiasm.  As she finished breakfast, she produced a diaper-filling poop; she was noticeably relieved, and quickly went to sleep again. She woke up for lunch at noon, fed very well, and went right back to sleep. Promptly at three, she was hungry again, and ate copiously; then she decided that she wasn’t ready to go back to sleep, and spent some time observing all the goings-on in and around her room: other moms and dads holding their babies, nurses and doctors consulting, and helicopters outside flying past the NICU windows. After a while she got bored with just watching, and decided that she wanted the other folks in the room to pay some attention to her, so she threw a showy temper tantrum: she let out a few loud and angry cries, grabbed her nasal cannula and ripped it, tape and all, from her face. She seemed a bit startled at her own strength, but pleased at the attention this demonstration attracted; when her nurse came and re-taped her cannula, she smiled impishly, yawned and stretched her arms and legs, and only then went back to sleep.

 

Telling my mom a pretty funny joke

Ashley got a couple of pieces of good news today from Dr Friedman, the neonatologist and from Michelle, the nurse practitioner:

• First, the staff radiologist had examined Lillian’s renal ultrasound results, and pronounced her kidneys normal. One of the kidneys is noticeably smaller than the other, but this isn’t unusual. Because she is still very small (at least, she seems so to those who didn’t know her when she was one and a half pounds) at 9 pounds, 1.8 ounces, the veins and arteries leading from her kidneys did not show on the ultrasound; her doctors will continue to watch her blood pressure, which is only occasionally high currently, but there doesn’t appear to be any cause for concern in the kidneys at the moment.
• Second, the team removed the nasal gavage (her feeding tube) this afternoon, and Lillian will now feed on demand entirely from breast or bottle; if she’s asleep, they won’t wake her to keep to the NICU schedule, but will wait until she wakes to feed her; she’ll also get to eat as much or as little as she wants. They’ll observe Lillian over the next couple of days to make sure she gets the hang of being in control, but, based on her age and current behaviors, everyone is confident that she’s ready for this step — a step that’s also a necessary one for getting released from the NICU. It is possible that as she adjusts she may lose a little weight, but she’s at a size where this won’t be a cause for concern.

 

Grandpas are good for something, at least

Lillian’s still at .5 liter flow of oxygen, and will remain there for at least a couple of days while she gets used to the new feeding routine. Then, they’ll decide whether to lower her to .25 liter: that’s the target oxygen flow for release from the hospital. Though there are no guarantees yet, the team is seriously discussing making a decision on Monday or Tuesday of next week about whether or not to release Lillian from the hospital; if that decision is “yes, send her home,” then she would likely be released Thursday or Friday — just in the nick of time to welcome old St Nick! But, it’s still very possible that the decision will be “not quite yet,” and, although we’ll probably be disappointed, none of us want her released before she is truly ready.

Thank you for your prayers and support.

Lillian Grace Denby Update: 12/11/2010

Catching up on my Zs

Lillian Grace is 124 days old today.

Lillian had a bit of a rough night; her constipation made her very uncomfortable, and she didn’t sleep or eat well as a result. Fortunately, while eating breakfast, she was able to work the problem out (as it were). She was visibly relieved (perhaps mostly because she is really tired of all her nutty relatives talking and writing about her bowel habits — “Grow up,” she wants to tell them); after eating, she slept deeply.

Pooped

She woke up just in time for lunch, and nursed hungrily for a full twenty minutes, then passed out on her dad. She’s not such a tiny thing anymore: 8 pounds, 15.5 solid ounces of baby girl. The team has put off the renal ultrasound, probably until Monday. They’ve also started discussing lowering her oxygen flow from .75 to . 5 liters; this could happen as early as tonight, but is more likely on Sunday or Monday. She’s been very stable at .75 L, with excellent oxygen saturation and respiration. She clearly finds the new nasal cannula more comfortable than any of the other contraptions she’s worn on her face: it’s much smaller in diameter and therefore much lighter. She only pulls it out two or three times a day now, instead of two or three times an hour — so they also don’t need to put socks on her hands quite as often.

Plum tuckered out.

Ashley and Josh went home in the afternoon and put together the final piece of Lillian’s furniture — the changing table — and hung some pictures and tidied here and there and tried to wrap their minds around the possibility that Lillian herself might be home soon. It’s the Advent season, after all, and a good time to prepare for all sorts of long-awaited arrivals.

Thanks for your prayers and support!