Lillian Grace Denby Update: 11/30/2010

Naptime

Lillian Grace is 113 days old today.

Lillian has been in the NICU at Memorial Hermann Southwest for just over 16 weeks; those of you who’ve followed along since she started on August 9th have seen how far she’s come and how big she’s gotten. But 16 weeks in neonatal intensive care is tough not just on the tiny patients, but on their moms and dads as well. Now that Lillian is breastfeeding, the schedule has been pretty grueling — at the NICU first thing in the morning, back til 10 or 11 at night, pumping every three hours when the baby isn’t breast-feeding. The result can be very tired moms and dads. Our NICU staff approach infant care as a family matter — this means they are looking out for moms and dads and assessing them as they assess their babies. So, when Ashley went to the rounds meeting today, she first heard that the NICU team is pleased with Lillian’s progress, very happy about her feedings, and optimistic that the slow and steady respiration plan is working; then, the staff had some orders for Lillian’s tired mom and dad: first, to take the evening and morning off from the NICU, especially wanting Ashley to get some sleep tonight and in the morning when not pumping; and they prescribed a weekly date night for Ashley and Josh. Of course, moms and dads hate leaving their babies — but, especially for lactating moms, sleep is important: tired moms produce less milk.

Echocardiogram

Lillian has resisted bottle feedings up until now; the nurses concluded that she did not like the taste of the fortification they mix in with mom’s milk; tonight, they changed to a different formulation for the fortification — and Lillian ate all 70 mLs (even little babies can be picky eaters). If Lillian continues to feed well at both breast and bottle, she will be able to shift to all oral feeds more quickly; receiving all her food orally is one of her big remaining goals before going home.

For very hard-core baby video fans only: I’ve added a brief video of yesterday’s echocardiogram, so you can see Lillian’s beating heart. Some family members believe this video proves the videographer has gone off the deep end, from obsession to lunacy.

Thanks for your prayers and support!

Lillian’s Beating Heart: Scenes from an Echocardiogram 11/29/2010

Lillian Grace Denby Update: 11/29/2010

Talking with Mom 1

Lillian Grace is 112 days — 16 weeks — old today.

Lillian’s Weekly Stats:

• Height: 50.5 cm (1 cm gain) 19.88 in
• Weight: 3688 gm (378 gm gain) 8 lb 2 oz
• Head Circumference: 34 cm (1 cm gain) 13.38 in
• Milk Volume: 70 mL/3 hours (8 mL gain) 2.36 fl oz

As you can see in the weekly stats above, Lillian passed the eight pound mark — that’s a six and a half pound weight gain since she was born 16 weeks ago. Her skin was beet-red and she had almost no fat on her body at birth; now, her skin is a smooth and healthy pink and she has lots of healthy baby fat in all the right places. When her mom is holding her, she gurgles and smiles; when she is eating, she smacks and slurps. When she is done eating, she belches and toots with gusto. When she is tired, she fusses and cries. When she sleeps, her tired parents grab a bite to eat, take a nap or try to catch up on a chore or two. In short, she’s like most other newborns, just with a bunch of breathing tubes and a bedroom that’s a few miles from her mom and dad’s rather than a few feet.

Talking with Mom 2

We continue to hope that she will be home by Christmas, but the timing is mostly up to Lillian and her lungs. She is receiving humidified oxygen at a rate of 3.5 liters per minute, reduced from 4 liters this morning. Before she can go home, she’ll need to be supported only by non-humidified oxygen at a rate of .25 to .5 liters per minute, ideally. Every few days, the respiratory team, in consultation with the neonatologists and nurse practitioners, attempts to lower the flow rate a bit. Then, they watch her oxygen saturation and respiration rates to make sure she is not showing signs of fatigue and that she’s maintaining her blood oxygen saturation at a reasonable oxygen mixture — the target appears to be in the 25 – 35% range. Signs of fatigue can take 24 to 48 hours to show up, so weaning attempts are about three days apart, at least. Lillian’s respiratory history has been that very slow and very gradual weaning works best — she hasn’t responded well to attempts to “push” her, though some babies do. So, we (and her doctors and nurses) can sound a bit vague when answering the question “When is she coming home?”: we don’t know, we mostly hope.

 

Talking with Mom 3

Before Lillian comes home, she’s also got to take all of her food orally, either by breast or bottle. When she gets home, the plan is for Lillian to take almost all her meals from the breast; in the hospital, that isn’t practical, since Ashley can’t be there 24 hours a day. She is there now every morning, doing the 9 am and noon feedings by breast, and every evening for the 6 pm and 9 pm feedings — this assumes that Lillian is awake for all of these feedings; sometimes, she’d rather sleep. But Lillian’s on target to be almost entirely on oral feeds in the next week or two.

 

Cousin Chris & Me

Lillian’s cousin Chris Graves, just back from a cruisin’ honeymoon with his bride Jennifer, stopped by to see his favorite almost-four-month-old baby cousin, and, after extensive questioning from Ashley about any potential exposure to rare tropical diseases while honeymooning, he got to hold Lillian for a while. In addition to distinguished visiting relations, Lillian got a visit from the echocardiogram man this morning, and we’ll hear results of that test in a few days.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/28/2010

Waking up on Sunday evening

Lillian Grace is 111 days old today.

Ashley and Josh came back to the NICU bright and early this morning. 7 pound, 14 ounce Lillian welcomed mom and dad with a big yawn, a stretch and an immediate return to dream land (what do babies dream of, anyway?). She wasn’t interested in breast-feeding or bottle feeding: she just wanted to sleep. After a while, Ashley left Lillian with Josh and went off with her mom to run some errands and take a nap. Josh got some good daddy time with Lillian and gave her her noon feeding from the bottle — except Lillian didn’t want much: the nurses think maybe, now that Lillian’s had a taste of unfortified milk straight from the breast, she may object to the flavor of the fortifications with which they supplement some of her bottle feeds. They’ll watch this and try a couple of different approaches if she continues to resist bottle feedings.

Deep in conversation

Josh came home in the afternoon, and Ashley went up to the NICU for Lillian’s nine o’clock feeding. Tonight was a lot calmer and quieter than last night; one high-maintenance infant moved to a different room, and no parents attempted to inflict coughing toddlers on the NICU residents. Lillian’s respiratory therapist gave her a round of CPT (Chest Physiotherapy) using a soft plastic cup (some RTs use an electric device) which he tapped firmly on and across her chest, breaking up various bits of crud in her lungs — she gets CPT four times a day. Lillian enjoys CPT: it’s kind of like getting a massage. After CPT, the RT suctioned her nose and mouth, removing any accumulated crud (crud is some kind of highly technical medical term, I think). Lillian does not enjoy suctioning.

Sleeping sweetly

After respiratory therapy, Lillian got to breast-feed: she was very hungry and fed with gusto, with occasional breaks for burping (she can let out a belch that would make any 10 year-old boy proud). Of course, she managed to disconnect the tube leading to her nasal cannula, setting off a loud and piercing alarm; but her nurse fixed this very quickly. Lillian has something of a reputation among the respiratory team: she reportedly holds the record for most number of times pulling out her tube when she was on the ventilator; and she regularly pulls off tape, hats, velcro — she works to circumvent whatever methods the staff use to keep breathing devices in place on her face. But that was it for excitement in the NICU tonight, much to the relief of a tired mom.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/27/2010

Ready to rock and roll

Lillian Grace is 110 days old today.

Ashley and Josh wanted to sleep late on Saturday, so they forced (forced, I tell you!) the Houston grandparents to take the morning shift at the NICU. It was very difficult work. Grandma Nancy did the diaper changing (almost as if she’d changed a diaper or two before), and fed Lillian with a bottle of Ashley’s best mother’s milk. Lillian thought grandma seemed to know what she was doing, and wolfed down most of the bottle in fifteen minutes or so (you can watch a video of this, complete with sound effects, here). Then Lillian sat happily with grandma, smiling every now and then, and drifting off to sleep. A bit later, she needed another diaper change, and afterward, fussed a bit. She enticed her grandfather to pick her up, and soon they were happily sitting in one of the comfortable parent chairs seeing who could sleep the longest and snore the loudest.

Lovin' my dad

Ashley and Josh spent the morning (after waking up) and early afternoon unpacking and enjoying a quiet meal together, then came down to the hospital to spend time with Lillian and do the 9 o’clock feeding by breast. They were displeased to find that at the six o’clock feeding, the nurse misread the orders and gave Lillian formula instead of mother’s milk (Ashley has enough milk stockpiled to feed Lillian for a month or two). Level 2 is very full and very busy at the moment, and they had to bring in another nurse to assist. One of the families visiting a newborn in the Lantana room had the baby’s brother in tow; he was coughing quite a lot — not something you want to see when your own baby has chronic lung disease. Eventually, the nurses required the young fellow to put on a mask (or leave), but this sort of thing puts moms and dads on edge: when you’ve come so far, you don’t want to take a step back — especially not on account of carelessness or thoughtlessness. Still, an evening with Lillian, even when you are on edge, beats most other forms of entertainment; she can have a wonderfully tranquilizing effect — just ask her grandfather.

Grandma Nancy & me

She’s up to 7 lbs 11.5 ozs, and her breathing continues to improve slowly — very slowly — and she needs just a bit less oxygen support every day. We also added a slide show — Waking Up — of Lillian waking up.

Thank for your prayers and support!

Grandma Nancy and Lillian: A Video

Nancy gets to feed Lillian for the first time. You can hear Lillian smacking and slurping even over the sound of the Vapotherm breathing support device, which makes the NICU sound like a spaceship in a cheesy 1950s sci-fi movie.

Lillian Grace Denby Update: 11/26/2010

Bouncing

Lillian Grace is 109 days old today.

One of the things Ashley and Josh have discovered recently is that while on the one hand preemie parents are delighted that their growing baby can now cry and fuss and be cantankerous in the most baby-like way, on the other hand they might occasionally find themselves wishing that she would go a little easy on the cantankerous-ness and try a little more sweetness and light. All 7 lbs, 11 ozs of Lillian spent the morning and evening testing the patience of her mom and dad.

Getting a good breast-fed meal from mom helped in the morning and at lunch time. Then, dad holding and swaying with her relieved the boredom of the NICU — for a bit.  Then, a session of back-patting — for a bit. Then, listening to mom sing — for a bit. Then, bouncing in her bouncer — for a bit. Then, mom reading poems — for a bit. For Lillian, it’s somewhat like the rest of us feel when the newness of our cable subscription wears off, and as we zap through each of the 400 channels, we realize there is not a thing of interest for us to watch. Even her evening breast-feeding bored her, and after Ashley and Josh finally got her to sleep, they went home; channel surfing is not in their evening plans.

Lillian is doing well on the nasal cannula and Vapotherm; she spent most of the day at 30% oxygen (down from 38%). The nursing team returned her to a nasal gavage today, though with a smaller tube than last time. They want her mouth to be unobstructed, encouraging positive associations with her oral feedings.

Ashley and Josh had a pleasant lunch with Lillian’s great-grandmother Joan, who is (happily) out of the hospital, home and recovering nicely. They plan to sleep late tomorrow morning and grandma Nancy is going to go give Lillian her morning feeding by bottle. She is trying to pretend that she is not excited.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/25/2010

 

With mom and dad

Lillian Grace is 108 days old today; she’s reached 39 weeks gestational age; her original due date, December 2nd, is one week from today.

 

Lillian spent a quiet Thanksgiving in the NICU, breast and bottle feeding, and breathing well on nasal cannula and Vapotherm. Ashley and Josh spent the morning with her, then went off to feast on Thanksgiving goodies

We thank you for your continuing prayers and support and wish you and yours a Happy Thanksgiving!

Lillian Grace Denby Update: 11/24/2010

Lillian Grace is 107 days old today.

I'm not so sure about that...

Lillian’s weight today is 7 lbs, 8.1 ozs: that’s 6 pounds more than she weighed when she was born on August 9th. She’ll be 39 weeks gestational age and exactly one week from her original due date tomorrow — a true day of thanksgiving for all of us!

Yesterday evening the respiratory team added a Vapotherm device to Lillian’s nasal cannula. This device provides a higher flow and warms and humidifies the oxygen to prevent Lillian’s nasal passages from getting too dry. Michelle, today’s nurse practitioner, decided to go back to an oral gavage (feeding tube) from the nasal gavage; there wasn’t enough room for nasal cannula and the gavage tube without irritating Lillian’s nose. She’s doing well so far since going off C-PAP, despite the fact that the Vapotherm malfunctioned at first and shot a bunch of water up poor Lillian’s nose — unpleasant for Lillian and scary for mom and dad.

Josh, Lillian & Ashley's Arm

Ashley and her mom Nancy spent the morning and early afternoon with Lillian, who did not sleep through either her 9:00 am or noon breast-feeding sessions — with her 9:00 pm breast-feeding and 3:00 pm bottle feeding, Lillian completed 4 of her 8 daily feedings orally for the first time today. She will likely get 5 oral feedings a day beginning tomorrow. Mom and Grandmom gave her a bath, and Nancy got a series of pictures of Lillian with her face bare of tubes — we’ve added a slide show of them called Moody.

Ashley and Josh went back to the NICU this evening to be with Lillian, and will be back in the morning to celebrate the holiday with her. No turkey, stuffing or cornbread for Lillian, however: just mama’s milk for dinner and iron supplement for dessert!

Thanks for your prayers and support and Happy Thanksgiving to all of Lillian’s friends!

Lillian Grace Denby Update:11/23/2010

Mysteries of the Universe: Solved

Lillian Grace is 106 days old today.

Today, Lillian’s neonatologist, nurse practitioner and respiratory team decided to take Lillian off C-PAP and put her on nasal cannula full-time. Her respiratory therapist made the switch just before 9:00 am this morning. The team raised her oxygen support (she’ll not have the pressure support of the C-PAP, so they’ll keep her oxygen support higher at first); they will watch her carefully: Lillian may get tired after a day or two; if the team thinks she’s too tired, they’ll put her back on C-PAP for a while. However, the respiratory team weaned her very gradually to get to where she is today, and they are cautiously optimistic. If she is able to do well on nasal cannula, it’s another big step toward getting our girl home by Christmas.

With C-PAP gone, Lillian’s nurses switched her feeding tube from an oral gavage (feeding tube inserted through the mouth, down the gullet and to the stomach) to a nasal gavage (feeding tube inserted through the nose, down the gullet and to the stomach). Whenever Ashley has breast or bottle fed Lillian, she’s had to remove the oral gavage, and then Lillian’s nurse has had to re-insert it after Lillian finished eating. The nasal gavage does not interfere with Lillian’s mouth, and does not have to be removed for oral feedings; that makes it easier to be more spontaneous with breast-feeding. The gavage will remain until Lillian is taking all her nutrition orally; most of the nurses prefer to use the gavage for administering some of the supplements — particularly iron — because they taste pretty bad (iron is the primary cause of stinky baby diapers — and of constipation).

I want to be alone now...

Today’s morning feeding went well: Lillian was very hungry (she’s still adding weight: she’s 7 lbs, 6.9 ozs today). She stayed up for a couple of hours, fussed some (several impressive belches and frequent and loud gaseous emissions), looked around a lot and let the other babies know that she is in command of the Lantana Room of the Memorial Hermann Southwest NICU. When her mom came back from pumping, Lillian indicated that she wanted something else to eat. Ashley made her a small bottle of breast milk; Lillian took two sips and promptly went to sleep. Babies could teach our politicians a thing or two about how to get what they want; babies have the added advantage of being easier on the eyes and ears than any politician living or dead.

Thanks for your prayers and support!