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Lillian Grace Denby Update: 10/31/2010

Eyes open

Lillian Grace is 83 days old today.

Lillian continues to gain weight: she weighed 5 lbs, 6.8 ozs this morning and she’s receiving 45 mL of milk every three hours. Her respiratory team is pleased with her progress as they work on weaning her from C-PAP; they are monitoring her closely, making small adjustments to various settings on her machines, and varying plans based on how she responds to the adjustments. She might get off C-PAP next week — or it might happen a week or two later. Ashley and Josh would love to have her on the nasal cannula full-time, if her lungs can support it: breast-feeding, kangarooing, even just picking her up are all much easier when she’s on the cannula; much easier means less stressful for mom, dad and baby, as well.

Gotta dance

This afternoon, Lillian coughed, started to turn blue, and set off her alarms as she de-satted and her heart rate dropped — the scary signs Ashley and Josh keep hoping they won’t see any more. Today, they sat Lillian up, and she recovered quickly: her C-PAP is humidified; water vapor condensed in her C-PAP tube and she inhaled it and her body reacted as if she was drowning; holding her in a sitting position quickly drained the little bit of water she’d inhaled. Her respiratory therapist then changed out her tubes and adjusted the humidity levels. A few weeks ago, something like this would have set Lillian back for a day or two at least; today, she was back to normal within five minutes: she now has her own reserves of strength to call on. Of course, incidents like these remind us of why she still needs to be in the NICU, but if she continues to do well, we’re pretty sure she’ll be home before Christmas.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/30/2010

Lillian in a Dress

Lillian Grace is 82 days old.

Lillian is no longer in critical condition: the doctors told us this a couple of weeks ago, but now the insurance company says so, too, so it must be true. We are still sometimes in the roller-coaster mind-set of the first couple of months in the NICU: every time there’s a good-news high, we instinctively prepare for some bad-news low. But this new part of the NICU roller-coaster is much smoother — there seem to be more highs than lows: most of the changes are good ones, and the occasional lows are not as sudden or as deep. She isn’t off the roller coaster, but her challenges now, d.v., are likely not life-threatening ones. Despite our skepticism, her recent big weight gains seem to be holding up: she weighed 5 lbs, 5 ozs this morning. Much of her development mirrors the development of a baby of her gestational age still in the womb: it seems miraculous to us because we normally wouldn’t see it — mom would feel her kicks and twists and turns, of course, and would be complaining about all the things pregnant moms usually complain of — but to be able to watch her as she becomes more baby-like everyday is a very great joy.

Josh & Lillian

Lillian had her first hearing test today: the right ear passed and the left ear failed; she’ll get another test in a couple of weeks. To test her hearing, the audiologist attached electrodes to her head and measured the brain response to clicks sent through little earphones. It’s not unusual for infants to fail their first hearing test; if further tests indicate a problem, she’ll add a hearing specialist to the list of doctors whose 401Ks she will enrich in the coming years.

Josh and Ashley held Lillian for several hours today and did parental stuff — diaper changes and talking nonsense and so on; Ashley and Lillian kangarooed in the afternoon with the nasal cannula. The respiratory team dropped her PeeP setting again today, and Lillian did well: work on weaning from C-PAP will continue over the next couple of weeks.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/29/2010

Bear's Eye View

Lillian Grace is 81 days old.

Lillian’s early morning weigh-in reported her weight as 5 lbs, 2 ozs: if correct, this is a gain of 4 ozs since yesterday, but it is suspiciously similar to yesterday’s discredited weight. Some of us are again skeptical. Yesterday’s theory was that a transposition of numbers when recording her weight in grams resulted in a bad reading; today’s theory is inconsistency in weigh-in methodology — it may depend on what she has on when she’s weighed: whether her C-PAP hoses remain connected, for example, could make a difference of 2 or 3 ounces. We’ll see what the trend is over the next couple of days, but we are thrilled that Lillian is right at or just over 5 pounds — it’s another big step forward.

Ashley & Lillian

Ashley’s nose is not happy with autumn in Houston: it’s running full-time; so, anytime Ashley held Lillian today, she wore a mask. Lillian didn’t seem to notice and gazed adoringly at her mom whenever she was awake. Dr Haider, today’s neonatologist (and the neonatologist on duty at Lillian’s birth), is pleased with Lillian’s breathing progress: today, he had Lillian try for two hours on nasal cannula while kangarooing with mom (up from one hour). Lillian did very well for an hour and a half, spending some of that time doing non-nutritive feeding; then, she got tired, and her respiration and oxygen saturation dropped. Her team put her C-PAP back on and she recovered quickly. Tomorrow’s goal will also be two hours on the cannula.

Pooping has returned to normal: two or three times a day, and in copious quantities. Her nurse gave her a bath early this morning: when baby smells strongly of baby poop, delay is not an option. As a result of all that pooping and bathing (she loves the water), Lillian was in a happy mood all day, and smiled often for her mom and dad.

Thank you for your prayers and support!

Lillian Grace Denby Update: 10/28/2010

 

Lillian

Lillian Grace is 80 days old today.

The morning began with some startling news: when the night shift weighed Lillian, they recorded her weight as 2,319 grams — that’s 5 lbs, 1.8 ozs! — a gain of 4.8 ozs overnight. Wow, we thought, that hind milk she’s getting from Ashley must be some pretty powerful stuff. The day shift nurses were a wee bit skeptical, so when it was time for Lillian and Ashley to kangaroo, they re-weighed her. The day shift’s skepticism was well placed: actual weight was 4 lbs, 14 ozs, a respectable 1 oz gain; a transposed pair of digits on the chart got the blame.

Lillian’s got a touch of constipation again, so had some fussy spells today — the team is going to let her try to work this out herself; they want to be careful not to get her dependent on suppositories. But, she was awake and alert a number of times today: Ashley read her poems from one of her favorite books from her own childhood, The Giant Golden Book of Elves and Fairies; Lillian resembles any number of the elves and pixies in the book’s illustrations.

Ashley spoke with the respiration team today: Lillian continues to progress on C-PAP and responded well to yesterday’s PeeP level change. If she does well over the weekend, they plan to lower her flow and pressure levels; if that goes well, she may move to high flow nasal cannula by mid-next week.

In the afternoon, the team put the nasal cannula on and Ashley spent a happy hour kangarooing with Lillian; they did a bit of non-nutritive breast-feeding, but Lillian really just wanted to snuggle up on mom and sleep.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/27/2010

Asleep with Pacifier

Lillian Grace is 79 days old and 35 weeks gestational age.

Lillian had another good night, and gained two more ounces: she now weighs 4 lbs, 13 ozs. Each day, it seems she’s a little more alert and a little more aware of her surroundings. She still sleeps most of the time, but periodically wakes up (particularly around her feeding time), moves her arms and kicks her legs, opens her eyes and looks around. Mom and Dad can touch her, pat her, change her, talk to her, even pick her up — quite a change from her first two months when she spent her days in the dark in her isolette.

Ashley and her nurses gave Lillian a bath today (we’ve added a video of this: Bath Time). She squawked a bit, but still enjoyed it (her oxygen saturation shoots up when water pours over her)  — and she smelled much sweeter when she was done.

Lillian kangarooed with her dad in the afternoon, with the cannula instead of the C-PAP. A bit earlier, the respiration team lowered the PeeP (positive end-expiratory pressure) on her bubble C-PAP, bringing her another step closer to getting off of C-PAP: that is, another step closer to going home.

Thanks for your prayers and support!

Bath Time: A Video

Lillian Grace Denby Update: 10/26/2010

Ashley & Lillian

Lillian Grace is 78 days old.

Lillian was awake and alert several times today — especially around feeding time. Each time, she opened her eyes and looked around, appearing to stop and gaze at faces and fingers; every time her mom spoke Lillian’s gaze and attention seemed to go immediately to her. When Josh and Ashley were ready to go home at the end of the day, she woke up and looked at them as if to say “don’t go yet,” and so of course they didn’t.

Lillian had a busy day yesterday with the introduction of the cannula and with her eye exam, and overnight she received a blood transfusion and diuretic, but her mood today was (mostly) sunny and serene nonetheless, and she graciously allowed her mother to change her diaper and read to her: Goodnight Moon and The Hungry Caterpillar and Guess How Much I Love You? (In the latter book, a baby hare spreads his arms as wide as he can in answer to the title’s question; as soon as Ashley read that bit to her, Lillian spread her arms as wide as she could — coincidence? or genius?). She did fuss a bit when her food didn’t arrive at precisely the scheduled time: she does not approve of tardiness, but forgave the miscreants once the milk began to flow.

In the afternoon, rather than attend rounds, Ashley chose to kangaroo with Lillian. The respiratory team switched Lillian from C-PAP to nasal cannula for the kangaroo session; they originally planned to keep Lillian on the cannula for 20 minutes, but Lillian maintained her respiration and oxygen saturation so well that they left her on the cannula for just over an hour — wonderful for mom and baby: the cannula is much easier to manage than the C-PAP, and so mom and baby are more relaxed.

Lillian

Sonya, Ashley’s lactation nurse, asked her to start separating fore milk from hind milk when pumping. At each pumping, she’ll pump the first five minutes (the fore milk) into one bottle, then for the balance of each session, she’ll pump the remainder (the hind milk) into a second bottle. She’ll freeze the fore milk, and for the next several weeks, give Lillian only hind milk — it’s more nutrient and fat dense, and will help Lillian continue to gain weight quickly (she weighed 4 lbs, 11 ozs this morning).

We added a wonderful short video — The Eyes of Lillian Grace — in which she opens her baby blue eyes and looks at the camera; she hiccups throughout the video (it’s filmed during her breakfast time). Her mother can be heard remarking on the state of Lillian’s diaper; happily, my camera is not equipped to record the odoriferous evidence that precipitated this remark.

Thanks for your prayers and support!

The Eyes of Lillian Grace: A Video

Lillian Grace Denby Update: 10/25/2010

 

Lillian on Nasal Cannula

Lilian Grace is 77 days — 11 weeks — old.

Lillian’s Weekly Stats:

• Height: 44.5 cm (.5 cm gain) 17.5 in
• Weight: 2084 gm (128 gm gain) 4 lb 9.5oz
• Head Circumference: 28.5 cm (.5 cm gain) 11.2 in

Lillian’s respiratory team, in consultation with her doctors, decided to begin to introduce Lillian to the next phase in her breathing recovery: the nasal cannula in place of the C-PAP (the nasal cannula is a clear tubing with prongs that deliver oxygen to the nose, and is much simpler to manage than the C-PAP, but doesn’t provide pressure support). At first, she will use the cannula for about 20 minutes twice a day while kangarooing or non-nutritive feeding. This will allow Lillian to exercise her breathing muscles without getting over-tired and will help Ashley breast-feed Lillian without the C-PAP apparatus getting in the way. When they first tried it this morning they gave her about 4 hours on the cannula; but they determined that she was having to work too hard and was getting too tired, so, after Ashley kangarooed, they put her back on C-PAP for the rest of the day.

Lillian also received her second eye exam. The eye doctor observed that she has stage 2 Retinopathy of prematurity (ROP), an abnormal blood vessel development in the retina of the eye in a premature infant. She will have an eye exam every week for the next several weeks. Her eyes may develop normally and require no further action; if the ROP continues to stage 3, she will receive injections of a new drug that has been very effective in treating ROP. (Up until recently, laser surgery was the standard treatment; the drug therapy is less invasive and should not require her to go back on a ventilator as would the laser surgery). ROP is very common in babies born as early as Lillian; she did not show signs of it on her first eye exam a few weeks ago.

We added a brief video of Lillian sleeping with the nasal cannula on: https://thedenbyclan.wordpress.com/2010/10/25/lillian-tries-nasal-cannula-a-video/

Thanks for your prayers and support.