Lillian Grace and Ashley Denby Update: 4/5/2011

 

Napping in the car

Lillian Grace is 239 days (4 days shy of 8 months) old today; her adjusted age is 4 months, 3 days. She’s been home from the hospital for 3 and 1/2 months!

 

Lillian’s Official Stats as of Tuesday, 4/5:

• Height: 64.5 cm (4.8 cm gain) 25.39 in
• Weight: 6365 gm (1035 gm gain) 14 lb 5 oz
• Head Circumference: 42 cm (2.6 cm gain) 16.5 in

Lillian had visits at Texas Children’s today with her neurologist and her pulmonologist. The results: she is breathtakingly normal: right where she should be at 4 months adjusted age. For a baby born at 23 weeks gestational age, this is very good news. Dr West, her pulmonologist, after listening to her lungs said that she sounds like the million dollar baby that she is. She’ll follow up with the neurologist in 8 months and with her pulmonologist if needed.

 

Eating solid food for the first time

Yesterday, Lillian had solid food — rice cereal — for the first time. She loved it, though she left a lot of it on her face. She’ll be eating some twice a day, and next week she’ll get to try oatmeal. Ashley has started her on one bottle of formula a day. Ashley won’t be able to breast-feed Lillian for about a week after her surgery, due to the medicines she will be taking. If no further treatment for her cancer is needed, then she should be able to go back to breast-feeding then (she has about a week’s supply of breast-milk stored in the freezer). If Ashley needs further treatment, then Lillian will switch to formula at that point. We are expecting that Lillian isn’t going to be happy about having to feed from bottles; but we know that when she’s hungry enough, she will — reluctantly.

 

 

I'll be crawling soon... watch out!

Ashley’s surgery is tomorrow and we’ll send out an update afterward.

 

Thanks for your prayers and support!

 

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 1/24/2011

 

Playing on the floor

Lillian Grace is 168 days  — 24 weeks — old today. Her adjusted age is 7 and 1/2 weeks, and she has been home from the hospital for 5 weeks.

Lillian went this morning to the Care Group to receive her second Synagis shot to help protect against RSV (Respiratory syncytial virus). We went to one of the patient rooms where the nurse weighed and measured Lillian so that she could prepare the correct dose (Lillian weighed 11 lbs, 3 oz this morning and was 22.64 inches long). As we waited while the nurse prepared the shot, we heard some very loud baby screams from the next room. When the nurse returned, Ashley remarked that the baby next door sounded unhappy; the nurse said, “Oh, it’s unhappy babies; triplets, in fact.”  Then she gave Lillian her shot, and pretty quickly there were four unhappy babies in the office. We stayed after the shot for 2o minutes to make sure that Lillian had no adverse reactions to the shot, then headed off for her next doctor’s appointment.

About a week before Lillian left the NICU, she received an ultrasound of her kidneys as a result of concerns about high blood pressure. The radiologist noted that one of her kidneys was smaller than the other;  we did not get a lot of details then, but the hospital scheduled a follow-up visit with the pediatric nephrologists at UT Physicians Pediatrics. That visit happened today.  We learned that the difference in size between Lillian’s left and right kidneys is pretty significant: her right kidney is larger than expected (about 7cm) and her left kidney is very small (about 2cm). It’s very likely that her left kidney has minimal function and that the difference in size is responsible for her high blood pressure. She’s going to have some more tests, beginning with a VCUG test next week to check the functioning of her bladder and lower urinary tract, and another ultra sound in three weeks. In the meantime, she’ll take medicine to help control her blood pressure; it appears likely that at some point she will have the smaller kidney removed. The good news is that so far her right kidney appears to have normal function — and you can function normally with just one good kidney.

 

Uh, mom, could you get this old geezer to stop buggin' me?

Lillian has decided that she is no longer interested in feeding from the bottle: she insists on getting milk directly from the source. Ashley and Josh consulted with Lillian’s pediatrician (Lillian’s bottles were supplemented with formula to enhance weight gain); Dr Rowland advised them to weigh Lillian daily and that as long as she kept gaining weight, going all breast-feeding was ok. Both baby and mama are happy about this: Lillian finds breast-feeding both tastier and more fun, and Ashley doesn’t have to pump very much or warm bottles in the middle of the night. Two important side benefits: without the formula Lillian’s diapers are much less stinky and she is much less gassy and so more comfortable.

Thanks for your prayers and support!

Lillian Grace Denby Update: 12/21/2010

On my Boppy

Lillian Grace is 134 days old today.

On her first night home Lillian was a little restless and mom and grandma Nancy didn’t get a lot of sleep (they did let Josh sleep, since he had to be at work early). However, today, she got back in a more normal pattern of eating, playing for a while and then sleeping for two or three hours. She spent some time in her swing, some time on the floor on a blanket and the multi-function Boppy pillow, and, of course, she bounced on a number of willing knees.

Josh and Ashley are working on getting used to the reality of a baby at home (just as do all parents of newborns) and they’re making all the myriad of little adjustments to their lives that babies demand. Then, they’ve got a big back-log of to-dos that accumulated while they attended Lillian as she vacationed in the NICU; they are thinking that maybe they’ll get caught up around the year 2028 or so.

 

In my swing

Lillian’s Finnish relatives flew into town tonight and can’t wait to see her — after a couple of days of quarantine to make sure they did not bring exotic European bugs over with them.

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!

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: 12/13/2010

 

Lillian the Pugilist

Lillian Grace is 126 days — 18 weeks — old today. Her adjusted age (calculated from her due date) is 11 days old.

Lillian’s Weekly Stats:

• Height: 52.5 cm (0 cm gain) 20.66 in (last week’s reading may have been overstated by a centimeter)
• Weight: 4122 gm (210 gm gain) 9 lb 1.4 oz
• Head Circumference: 35. cm (.5 cm gain) 13.78 in
• Milk Volume: 75 mL/3 hours (0 mL gain) 2.53 fl oz

Lillian had her renal ultrasound this morning; it took about an hour and we should have results in the next day or two. Ashley held Lillian’s hands and soothed her — the ultrasound is not painful, but the technician slides a cold probe all over and Lillian didn’t think that was very much fun. She ate well from the breast at 9, 12 and 6, and gobbled down her bottles at her other feeding times. She spent much of the day awake and alert, and she was fussy in the evening (natural gas production was in full swing).

 

Thinking about things

Dr Friedman, today’s neonatologist, examined her in the morning and said, a bit off-handedly, that if her progress continues, we might be talking about sending her home this time next week. We are pretending that we did not hear him, lest we jinx the deal. Both her respiration and feeding are going very well, and she is an active baby — all good signs.

Of course, even when Lillian is home, she’ll still lead a pretty isolated life, particularly during cold and flu season. For chronic lung disease babies, a cold that would merely be a nuisance in another baby can be deadly. She’ll stay out of shopping malls and day cares and grocery stores and any place where viruses and bacteria like to congregate. Visitors will get the third degree about their health from Ashley and Josh, and may have hospital masks tied to their faces. Before Lillian leaves the hospital, she’ll receive a Synagis shot to protect against RSV (Respiratory syncytial virus), a common virus that usually causes cold-like symptoms, but is the leading cause of hospitalization for chronic lung disease babies. She’ll continue to get this shot monthly during RSV season.

This is all at the top of our minds today because a boy who was born about the same time as Lillian, but at 26 weeks gestational age, and who has up until now had a NICU journey similar to Lillian’s, contracted a virus of some kind; he is back in Level 3 and on a ventilator. His name is Andy; please remember him and his mom and dad in your prayers.

Lillian’s Houston grandfather and uncle went to the NICU’s infant CPR class in the evening; Ashley went, too; she wanted additional practice. Esther, one of Lillian’s respiratory therapists, taught the class, and was a tough and demanding instructor. By the time the class was over, we had resuscitated our CPR practice babies about 20 times, and learned the infant version of the Heimlich maneuver for helping choking babies. The NICU requires the class for all parents before discharging their babies; in a case like Lillian’s, where the baby has lung and breathing issues, all of her potential baby-sitters need to know infant CPR as well.

Thank you for your prayers and support.