The Big Yawn: A Video

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: 11/25/2010

 

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: 10/4/2010

New clothes!

Lillian Grace is 56 days — 8 weeks — old.

After yesterday’s high drama, Lillian passed a restful and undisturbed night: she was very, very tired. But, she appears to be adjusting to the bubble C-PAP therapy, and to be maintaining her oxygen saturation levels as well. When Ashley came in this morning, there were smiles and hugs and congratulations from the nurses and therapists on Lillian’s team: getting off the ventilator is a very big step. The ventilator itself is gone from Lillian’s room, and so it is much quieter; now we hear just the soft bubbling sound of the C-PAP machine.

When Lillian was just a day old, the respiratory team and doctors put her on the C-PAP (Continuous Positive Airway Pressure) machine for breathing support, and she stayed on it for five days before going back to the ventilator. With the CPAP, she has a small mask over her nose with a couple of small tubes, one in each nostril. The two tubes, with Lillian’s airways, create a kind of circuit: air goes in one nostril’s tube and out the other; the machine maintains a constant pressure. The exhalation tube goes into a bottle containing a vinegar solution and as the air comes out, it causes the solution to bubble: that’s how this therapy gets the name bubble CPAP. (Any of you who have sleep apnea are likely familiar with C-PAP).

Isolette with Bubble C-PAP

Lillian lost 3 ounces — not surprising given yesterday’s exertions — but she has grown to 40.5 cm tall: that’s 15.97 inches. Josh got to come early today, and he and Ashley bathed her: she was very fussy, and keeping the C-PAP device in place is a bit of a challenge. Ashley kangarooed with Lillian for an hour, and found that, while it’s easier to move Lillian with the ventilator gone, it’s also much easier for Lillian to move herself about with the ventilator gone — and that keeping the C-PAP device in one piece and in place is as challenging during kangarooing as during bathing. And, for the first time, Ashley and Josh can hear her cry when she’s fussy — these are faint little cries right now, but thrilling — and frustrating: mom and dad have some work to do in figuring out what Lillian is trying to say.

The team decided that it was time to start weaning her from the isolette’s temperature controls again, so Ashley got to put some clothes on her baby, and learned how to swaddle her up in her blankets (it’s a technique they refer to as “burrito-wrapping” — apparently, refried beans are not involved); in addition to helping her regulate her temperature, swaddling will, in theory at least, keep her busy little hands out of trouble.

Until now, the team kept Lillian’s isolette fully enclosed in a specially designed cover that kept the interior dark all the time. Now, they will remove that during part of the day to help Lillian adjust to the natural cycles of light and dark. Her room will still be dim most of the time, but she’ll be exposed to filtered daylight.

All in all, it was a busy day in the NICU, where just about the time you think you’ve got everything figured out, everything changes, and you have a whole lot more to learn.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/3/2010

Lillian

Lillian Grace is 55 days old.

Premature babies do not like things to just flow along smoothly and serenely: premature babies like drama.

This morning, Josh and Ashley made their usual 5:30 am call to see how Lillian passed the night: the news was good — she’d gained 3 ounces and now weighed 3 lbs, 10 ozs. The respiration team had successfully lowered her breathing support another two notches to 13 bpm and she was doing very well at that level. When Josh got to the hospital a few hours later (he usually goes and spends some papa time on Sunday mornings), the news was even better: they’d lowered her breath support to 11 bpm and blood gas readings were still very good. Michelle, one of the nurse practitioners, came in and told him that since she was doing so well, the new respiration plan was to move her to c-pap tomorrow (Monday) morning; additionally, she told him that the tests ordered a couple of days ago to check whether she was getting sick all came back clean. Then Josh got to spend some time kangarooing with Lillian.

Ashley got to the hospital about 2:00 pm; she went back to Lillian’s room, gave Josh a hug — and then Lillian’s alarms went crazy. Lillian curled herself into a little ball, her heart rate dropped to 80, her oxygen saturation dove to 30%, and, most frightening of all, her skin turned blue. Her nurses, respiratory therapists and doctors came running — they asked Ashley and Josh to leave the room while they worked on Lillian. Mom and dad spent a miserable, terrifying 20 minutes not knowing what was going on. Finally, Michelle came out — and they found out that their head-strong premature baby had decided that the time to take out her respirator tube was right then: she had wiggled and pulled her tube out, resulting in the sudden and rapid drop in oxygen. Rather than put the tube back in, the team first “bagged” her (i.e., put her in a mini-oxygen tent to get her oxygen levels back up), and then put her on the bubble c-pap that they had planned to put her on tomorrow.

Josh and Ashley went back to Lillian’s room — happily, her skin was pink again, and her heart rate and oxygen saturation had returned to normal. Once the team finished stabilizing and working on her, they covered her isolette and turned out the lights; she’ll be on absolute minimum stimulation overnight — everyone thinks she’s had enough for one day.

We and her team hope that she’s able to stay on the c-pap support and won’t have to return to the ventilator; she’s receiving some medication to help with the inflammation caused by her abrupt removal of her tube.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/2/2010

Lillian

Lillian Grace is 54 days old.

She continues to grow: 3 lbs, 7 ozs this morning, a 2 oz gain. Lillian’s respiratory team successfully lowered her breath support to 15 bpm (target range is 5 to 10 bpm) and her blood gases continue to be good. She spent the day with mom and dad: she was kind of feisty; you can now tell when she’s unhappy (hungry or wet or just contrary): she fidgets, scrunches up her face and looks like she’s crying — if she did not have the breathing tube, we would hear her cries. Ashley and Josh have gotten pretty good at calming her down.

Thanks for your prayers and support!

Lillian Grace Denby Update: 10/1/2010

Sucking on fingers

Lillian Grace is 53 days old today.

This morning, Lillian gained another 20 grams to 1,522 grams — still 3 lbs 5ozs. The respiration team lowered her breathing support another 2 bpm to 17 bpm and blood gas readings are good.

About mid-day, her temperature started fluctuating a bit, so she had to take off her pretty new clothes and her nurse reset her isolette to maintain her temperature: she’s just learning to regulate her own temperature, and the team will let her try again in a day or two. Since temperature fluctuation can be a sign of the onset of illness, the team drew some blood and is running tests just to be sure she isn’t getting ill — there are no other signs of illness right now. Ashley and Josh are NICU veterans, now, and recognize the “2 steps forward, 1 step back” cycle that typifies life in the NICU — but it can still be very frustrating (moms and grandmas and nurses all get very excited about bows and hats and polka dot shirts for babies).

Thanks for your prayers and support!

Lillian Grace Denby Update: 9/30/2010

Big Lillian: 1.5 kG

Lillian Grace is 52 days old.

Today was a big day for Lillian: she gained another ounce, and weighs 3 lbs 5 ozs: that’s 1,502 grams metric (a system of measurement that only doctors, scientists, Europeans and a few demented math teachers really understand). What this means is that Lillian now has passed the line that divides micro-preemies from just plain preemies, both in terms of gestational age and weight. Her mom gave her a bath, her nursing team put a polka-dotted bow on her head, and they dressed her in one of the preemie outfits that her grandmother Nancy got for her when she was born — though it’s now just a bit snug — and swaddled her in her blankets.

All this is not just for show: Lillian is learning to regulate her own temperature, and today the nursing team began to wean her from her isolette’s temperature support. She’ll regularly be wearing more clothes and often be tightly swaddled in blankets.

Last night, the respiration team lowered her breathing support to 19 bpm, and she is doing well at that level. The revised estimate for moving her to c-pap is 7 to 10 days: she’s doing very well on this respirator, and current thinking is that if they can get her stable at between 5 and 10 bpm support, she’ll be much more likely to stay on the c-pap and not have to go back to the vent.

We finally received the results of the echocardiogram; in addition to the small pda we knew about from last month’s scan, they discovered a small blood vessel outside her heart that is open. The neonatologists at Memorial Hermann treat these open vents and vessels very conservatively: usually, they will close on their own — occasionally, surgery is required. The team will continue to check this while Lillian is in the NICU, and she’ll get at least one more echocardiogram before she leaves. Once she’s home, she’ll follow-up with a pediatric cardiologist.

Ashley took a brief video of her stretching and sucking on her tubes and fingers: it’s at https://thedenbyclan.wordpress.com/2010/09/30/lillian-at-1-5-kilos-a-video/

Thanks for your prayers and support!

Lillian Grace Denby Update: 9/29/2010

Ashley and Lillian in new hat from Grandma Peggy

Lillian Grace is 51 days old and her gestational age is 31 weeks.

Lillian gained 2 ounces and now weighs 3 lbs 4 ozs; the respiration team dropped her breath support to 20 bpm last night, but her blood gas reading was not very good, so they moved her back to 21 bpm. Her noon blood gas was good, so the plan is to try her at 19 bpm tonight. The team also began administering caffeine (she’s had it before). Caffeine will help prevent apneas (suspension of breathing) once she is on the cpap; they are starting her now to get her used to the caffeine before they move her to the cpap, which we hope will happen in 4 or 5 days.

Dr Mesvin, the NICU‘s medical director, stopped by and told Ashley and Josh that he is pleased with her progress (though cautioning that there is a way to go yet); he’s particularly pleased that she has adapted well to her current ventilator — not all babies do. There’s no word yet from the cardiologist on the echocardiogram — we hope this is good news.

Lillian 9/29/2010

Lillian’s grandmother, Peggy Denby, made her a hat to wear when she is kangarooing with Ashley and Josh (you can see it in the picture at the top of this post). It’s very soft, colored yellow, pink and blue, and stretchy enough that she will be able to wear it for some time to come. When she is in her isolette, the entire environment is temperature-controlled, and she doesn’t need any clothing other than a diaper; when she is kangarooing, she is out of the isolette: the temperature of that part of her that touches mom or dad  is well-regulated; but she needs a blanket to cover her back and a hat for her head — the room is cooler than the isolette.

Thanks for your prayers and support.

Lillian Grace Denby Update: 9/27/2010

Happiness: Just Pooped

Lillian Grace is 49 days — 7 weeks — old.

Today was measurement day, and Lillian is now 36 cm — 14.17 inches — tall, a gain of about a quarter of an inch since last week. The circumference of her head is 26 cm, 1 cm larger than last week. She is holding steady at 3 lbs, 2 ozs.

The echo cardiogram, delayed from last week, happened this morning, and we expect to hear results tomorrow. Her blood gas wasn’t very good this morning so they held her breath support at 24 bpm. Her doctor decided that she needed another blood transfusion (in fact, this need might explain this morning’s blood gas) which they gave her at about noon; mom held her hand while they put the IV in — Lillian is not very fond of getting stuck.

Dr Rios, one of Lillian’s neonatologists, told Ashley today that they are very pleased with Lillian’s progress in weaning from the vent, despite the apparent slow down of the last couple of days. The current plan (always subject to change) is to move her to the CPAP once her breathing is stable at the 20 bpm level. We don’t know exactly when that will be, but hope it will be in about a week or so. Once she is on the CPAP, it’s possible that she may move back to the vent from time to time if the team thinks she is tiring.

We’ve added a new slide show with some really clear pics of Lillian: https://thedenbyclan.wordpress.com/slide-shows/lillian-926-927-2010/