Ashley and Lillian Grace Denby

Dear blog and email friends,

Lillian Grace is 7 and 1/2 months — 226 days — old and doing very well. She’s been off of oxygen support for over 3 weeks, can roll herself over from back to stomach and (usually) from stomach to back. She’s trying to crawl, but without success — yet. She’s almost 14 pounds and has plenty of good baby fat.

She went yesterday and visited some of her earliest and dearest friends, the NICU nurses and staff at Memorial Hermann Southwest. She had a great time and smiled and showed off for them. They in turn admired how she has grown and were thrilled to see her without tubes or wires: where Lillian is today is in no small part due to their love and superb professional care.

After that visit, Ashley, Lillian’s mom, went to see the surgeon who, a few weeks ago, removed a growth from her back. Although not long after Lillian was born she had had a biopsy of the growth which indicated it was benign, her surgeon had this re-biopsied and the biopsy revealed that it was a melanoma.

Ashley went to see an oncologist today. She has a level 4 nodular melanoma, the most aggressive form of melanoma. As of right now, her cancer is considered to be at Stage 2. She will have her lymph nodes tested next week to see if it’s spread. At the least, she will have additional surgery to remove another 2 cm or so of tissue around where the melanoma was removed; if tests determine that the cancer has spread, she’ll have additional therapies.

Right now, she’s a little shell-shocked, but overall pretty positive: she thinks she’s got a good oncologist and they’re going to tackle this aggressively.

We’ve been sustained by your prayers and support throughout Lillian’s trials and humbly ask for them again for Ashley, her wonderful husband Josh, and for Lillian as they meet this new challenge.

Some of my best friends: NICU staff at Memorial Hermann Southwest

More of my best friends: NICU staff at Memorial Hermann Southwest

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: 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: 12/18/2010

My dad is one comfy guy

Lillian Grace is 131 days old today.

We’ve been going back and forth on when, exactly, Lillian will come home: as of today, she’ll be released on Tuesday, 12/21, between 1 and 4 pm. Since Ashley and Josh are rooming-in (i.e., spending the night in a special room in the hospital with Lillian) Sunday night, there was some thought of releasing Lillian on Monday, but as they worked on scheduling all the things that remain to be done, everyone ended up agreeing that Tuesday was a better day.

Asleep -- for now

Lillian got to hang out with her mom and Grandma Nancy in the morning (Ashley pays more attention to advice on nursing from her mom than any that her husband or father occasionally volunteer; we’re not sure why). She’s eating well, and gained more weight last night — she’s now 9 lbs, 4.6 ozs. In preparation for going home, her nutritionist is raising her calorie supplement: she’ll not be getting as many bottles at home (since her personal milk factory will always be there); but she’ll still need one or two, as the various supplements and fortifications will continue to be mixed with stored breast milk for delivery by bottle to Lillian. Josh and Ashley spent the afternoon just hanging out with Lillian, feeding her and playing with her and providing warm and cushy sleeping platforms for her naps. They went home in the evening for the last Saturday-evening-without-baby-at-home that they’ll spend for some time to come.

Thank you for your prayers and support!

Lillian Grace Denby Update: 12/17/2010

Mom & Dad are taking me home soon

Lillian Grace is 130 days old today.

Lillian’s nasal gavage came out a couple of days ago, and she switched to on-demand (that is, on her demand) feeding. Over the next two days, as she adjusted to this new concept she lost 23 grams. But yesterday, she realized that people actually would pay attention when she announced that she was hungry, and she fed voraciously. She added 73 grams (2.57 ounces) and now weighs 9 pounds, 4.3 ounces. Her breathing remains stable at her new lower flow rate (.25 liters); her respiratory therapist decided that the tape that holds her nasal cannula in place was just too boring, so she cut today’s strips into heart shapes. Lillian’s release next week appears more and more likely; Ashley and Josh are scheduled to room in on Sunday night: Lillian may come home Monday.

Eating wears me out

The local rep for Apria Healthcare delivered Lillian’s portable oxygen tank and apnea monitor to Ashley at the hospital this morning and trained her on both pieces of equipment. The oxygen tank, which comes with its own carrying case, is what Lillian will use for oxygen support when away from home (going to the doctor’s office, for example). Each tank holds about 4 hours of oxygen at Lillian’s current flow. At home, she’ll use an oxygen concentrator (Apria will deliver this to Ashley and Josh’s apartment and train them in its use this weekend). The apnea monitor will measure Lillian’s heart rate and detect any stoppage in breathing (apnea) that lasts longer than 20 seconds; if her heart rate is outside of preset limits (220 beats on the upper end and 80 on the lower) or if she has an apnea, a very loud, piercing alarm sounds. (She can also set it off by wiggling, pulling, passing gas or with a number of other tricks — anything that breaks contact between the electrodes and the monitor). It comes with its own carrying case, too, and has a battery backup for traveling and for power outages. It records all events, and Apria will send a rep once a month to download data; the data will be sent to their data center, interpreted and forwarded to Lillian’s pediatrician. So, even though Lillian will (knock on wood) soon be out of the hospital, she will still be hooked up to tubes and wires for a while yet.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/16/2010

A girl & her mom

Lillian Grace is 129 days old today. Her adjusted age (calculated from her due date) is 2 weeks.

Ashley met with Kristen, one of the nurse practitioners, yesterday evening to discuss Lillian’s progress and the chances of Lillian coming home. The tentative plan is, if all goes well, to send Lillian home on Tuesday, 12/21! (let me add a few extra exclamation points!!!!) If, however, there are any hitches, Lillian will not go home until the following week, due to the Christmas holiday. Ashley and Josh plan to “room in” on Sunday and (perhaps) Monday nights: they’ll stay in the NICU‘s special Parent Inn rooms with Lillian and the medical equipment with which she’ll go home: it’s a practice run for being at home. There are a number of things that have to happen in the next several days: among them: she’ll get more tests, including another hearing test and a final echocardiogram; she’ll spend some time testing her car seat; Ashley and Josh have to learn how to use her oxygen equipment; and, of course, she’s got to finish getting used to feeding on demand (she lost 22 grams last night, but ate well the rest of the night and this morning) and she’s got to continue to breathe (the team lowered her oxygen flow from .50 to .25 liters at 3:00 pm today). Ashley made an appointment for Lillian with her new pediatrician for 9:00 am on Wednesday, 12/22, the day after the scheduled release; but Ashley can’t quite get herself to believe the long-awaited home-coming may actually be about to happen.

Trying out for the lead role in the Xmas Pageant

Yesterday, the team did a urinalysis (more checking on Lillian’s kidneys): the nurses put six cotton balls in Lillian’s diaper; when Lillian’s diaper was wet, they took the cotton balls out, extracted samples of urine from them and sent the samples to the lab for analysis. The urinalysis results came back normal, and Lillian won’t be banned from playing by the NFL (good news for the Texans, one of the few teams that might actually be helped by adding a four-month old preemie to the roster). The hospital’s pediatric nephrologist looked at the results of Lillian’s kidney ultrasound and agreed that there is nothing currently to worry about, but she has a follow-up appointment (as an outpatient!) in late January with the nephrologist.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/15/2010

Mrs Claus, Santa and Lillian

Lillian Grace is 128 days old today.

NICU babies are special children and one of their perks is that Santa comes early to visit; today, both he and Mrs Claus made the rounds of the NICU (we’re not sure where the chimney is, so we don’t know how they got in). They gave each baby one of the warm hats their elves wear, a 2010 dollar coin and a big red stocking. Lillian’s nurses stuffed her into the stocking, then set her on Santa’s lap where she shared her Christmas wish (Lillian just had one: to go home soon with her mom and dad). Ashley dressed Lillian for the occasion in a white onesie emblazoned with gold stars. (There’s a video of this: Santa Visits the NICU). After Santa left, Lillian sat in her mom’s lap and sang Christmas carols (knowing that some of the more skeptical among you might find this hard to credit, we are posting a picture of Lillian with her mouth wide open in song).

Singing Christmas Carols to Mom

Lillian is adjusting to on-demand feeding: she only ate 15 mL of milk at six, but at nine gulped down 85 mL. She breast-fed copiously at noon and again at one; then, while her mom was out at lunch, she downed another 55 mL of milk from a bottle at a little after two. At four, she insisted on High Tea; as neither tea nor cucumber sandwiches could be found in the NICU, she settled for more mom’s milk. In between feedings, she slept soundly most of the time and worked at pulling off the tape that holds her cannula in place the rest of the time. She lost 1 gram last night, but we expected she might with the move to the new feeding regimen.  Her breathing continues to be very stable.

Santa and An Elf

The halls and doorways of the NICU are decorated for the holidays; as you get off the 4th floor elevator and begin to walk down the hall to the NICU you see a large inflated snowman illuminated from within; at night, standing there with his smile fixed in place he can be just a bit scary: we rode the elevator up the other evening with a family who had a four-year old in tow; he took one look at Frosty and jumped right back on the elevator. Dad eventually coaxed him out and carried him down the hall past the snowman, but he kept his face and eyes firmly buried in his dad’s shoulder so Frosty could not see him.

Thanks for your prayers and support!

Santa Visits the NICU

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.