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 at 1.5 kilos: A Video

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: 9/25/2010

Josh & Ashley bathing Lillian

Lillian Grace is 47 days old.

Lillian used her resting day yesterday to pack on 50 grams — she now weighs almost 3 lbs 2 ozs; you can see it in her face, which is much rounder and chubbier. Her blood gases looked good this morning, and the dietitian increased her milk volume to 25 mL every 3 hours. Dr Romero, one of Lillian’s neonatologists, told Ashley and Josh that they will re-start the weaning process tonight. He also told them that the team has been pushing Lillian pretty hard on weaning from the ventilator, and that she needed a pause to catch up. He expects that it’s likely she’ll need another pause or two as the process continues.

Lillian on Josh

Ashley and Josh got to bathe Lillian this morning for the first time all by themselves. Each of them took a side, and cleaned her using wipes and Baby Magic. They cleaned her ears with swabs and water. Under the watchful eye of Lillian’s nurse, Josh lifted Lillian and Ashley put a pad underneath her; then they removed her diaper (full of poop, of course) and began to clean her. A few minutes into the bath, she pooped again. After cleaning that up, they folded the pad and continued with the bath. Then, Josh lifted her again and Ashley changed her bedding. Josh put her down, and, just as they lifted her bottom to put a clean diaper on, she pooped again all over the clean bedding. This time, after cleaning her they first put the new diaper on, then Ashley lifted her and Josh changed the bedding. Some things — like when is the best time to put the diaper back on — may be best learned through experience.

We’ve added a new slide show, with pictures of Josh and Lillian kangarooing and of Josh and Ashley bathing Lillian: https://thedenbyclan.wordpress.com/slide-shows/bath-time-with-mom-dad-9252010/

Thanks for your prayers and support.

Lillian Grace Denby Update: 9/24/2010

Kangarooing 9/21/2010

Lillian Grace is 46 days old.

Lillian has officially doubled in size since she was born: she’s 3 pounds (1361 grams)! Of course, just after her weigh-in she overflowed her new, larger diaper, but we’re sticking with the pre-poop weight.

Lillian’s blood gas was not very good this morning, so the respiration team moved her breath support back up to 25 bpm; she’s been making very good progress since the respiration team began the process of weaning her from the vent; her doctor thinks she needs to rest for a day, so they’ll leave her at 25 bpm for tonight and resume the weaning at midnight Saturday. Her afternoon blood gas was very good, but she has been much less wiggly than usual, a clear sign that she was tired. Ashley didn’t kangaroo today so that Lillian could keep sleeping and the doctors decided to wait until next week on the echocardiogram.

This morning there were several rooms in the NICU open; by this afternoon, they were full. Ashley walked one of the new moms down to the lactation room. New mom was a little teary, and Ashley (now a 6 week veteran of the NICU) assured her she’d get used to it. Then new mom told Ashley how scary it was to have a baby so tiny. Ashley told her she understood, and that her own baby had just achieved 3 pounds. New mom’s jaw dropped. “Oh my god… 3 pounds! how big was she when she was born?”

“Oh, about one and a half pounds…how big is yours?”

” uh… 6 and a half pounds…”

This conversation and others very much like it are pretty common when you have a very early preemie.

Thanks for your prayers and support.

Lillian Grace Denby Update: 9/23/2010

Ashley and Lillian

Lillian Grace is 45 days old.

Lillian lost the two ounces she gained yesterday (this isn’t unusual, especially when she is pooping and peeing prodigiously). The nutritionist upped her feeds to 23 mLs. Her neonatologist ordered another echocardiogram tomorrow (it’s been about a month since the last one). They’ll check that the PDA and PFO noted last month are still closing properly — the doctor occasionally hears a slight murmur when listening to her heart through the stethoscope. Lillian’s breathing support went down two more notches to 24 bpm: the process of weaning her off the vent remains on schedule.

Out in the NICU‘s Family Waiting Room kitchen, Ashley became the victim of a heinous criminal act: someone stole her lunch from the refrigerator. She found the remnants of the plastic bags that had held it on one of the sofas, but unfortunately there was not enough forensic evidence remaining to identify the culprits. There were some suspicious toddlers hanging out in the waiting room,  but intense questioning of the suspects only resulted in shy smiles and a few cooing sounds. Future lunches may contain decoy sandwiches of Cayenne, Jalapeno and wasabi.

Thanks for your prayers and support.

Lillian Grace Denby Update: 9/22/2010

Lillian 9/22/2010

Lillian Grace is 44 days old; her gestational age is 30 weeks.

Lillian had three solid accomplishments today. She gained 44 grams and weighed 2 lbs 14 ozs this morning. Her breath support is now 26 breaths per minute and her blood gas readings remain good. She’s moved up another diaper size; she was producing more than her previous diaper size would hold.

Lillian's Hand

Ashley and Lillian kangarooed again this afternoon. Lillian let her uncle Richard touch her hand; she also made some hand gestures towards her grandfather that might cause trouble if practiced out on Houston‘s freeways.

Thanks for your prayers and support.

Lillian Grace Denby Update: 9/21/2010

Lillian and Ashley

Lillian Grace is 43 days old.

Lillian gained 30 grams yesterday, and now weighs 2 lbs, 12 ozs (1260 grams). She’s down to 28 breaths per minute support from her ventilator, and continues to have good results from her blood gas tests.

Ashley attended the grand rounds meeting with the medical staff today; they are pleased with Lillian’s progress, particularly with her adjustment to the new ventilator: they pronounced it “slow, but steady improvement.” Ashley asked about Lillian’s lung x-rays, which show not much change: the team told her that clinical progress (i.e., how she’s doing on the vent and on weaning from it) is really the key measure right now; the x-rays are unlikely to show much change for some time. Her lungs are growing, and that is good as well; but she will probably have respiration issues for at least the next 5 or 6 years.

Ashley has been producing larger volumes of milk than Lillian can eat, and her freezer at home is full of her frozen milk, as is the freezer at the NICU. She is in the process of donating a portion of her milk to Mother’s Milk Bank, an organization whose mission is to accept, pasteurize and dispense donor human milk by physician prescription, primarily to premature and ill infants (you can find out more about them at the link). The other morning, Josh made his morning coffee, then found out they were out of (cow’s) milk. He really likes milk in his coffee. He stared at that freezer full of milk, and began to form the thought: “I wonder if…?”, but decided that even carrying the thought further might result in his becoming an outcast from decent society.

Ashley got to kangaroo today and we’ve added a slide show at https://thedenbyclan.wordpress.com/slide-shows/september-kangaroo/

Thanks for your prayers and support.

Lillian Grace Denby Update: 9/20/2010

Lillian at 6 weeks

Lillian Grace is 42 days — 6 weeks — old.

In the academic world inhabited by many of Lillian’s friends and relatives (and remembered with varying degrees of dread by the rest), 6 weeks is one marking period, so it’s only fair that we grade Lillian’s progress at the end of this, her first marking period. Some of her subjects may seem a bit unusual.

Vital Statistics: A (She weighs 1230 grams or 2 lbs 11 ozs — a gain of 2 ounces since yesterday and of 1 lb 3 0zs since birth; she is just at 14 inches tall, a gain of 2.5 inches since birth; and her head is 25 cm in circumference, 4.5 cm larger than when she was born)

Feeding: A (She continues to eat well; her milk volume increased to 22 ccs today)

Pooping: A+ (This is her best subject, and indicative of excellent development in her digestive system)

Respiration and Breathing: B (Her most improved subject, but further development needed. Recent days have been very good, but we remain cautious)

Physical Education: A (She can wiggle with the best of them and occasionally turns herself from stomach to side)

Conduct: C (See physical education grade — dislodging her tube from time to time and scaring her mother on multiple occasions caused her to lose points here)

General Cuteness: A+ (No explanation required)

Ashley & Lillian 9/20/2010

Comments: Ashley got to kangaroo with Lillian today, and had a good visit with the discharge nurse: they talked about what to expect in the coming days — much depends on getting Lillian off the ventilator within the next couple of weeks. We expect that there will be some setbacks along the way, but Lillian has built up some reserves of strength now, and we hope she’ll remain on schedule.

Thank you for your prayers and support. Class dismissed.

Lillian Grace Denby Update: 9/19/2010

Lillian

Lillian Grace is 41 days old.

Lillian had another good night: the team successfully lowered her breath per minute support another 2 bpm to 32 bpm and she gained 10 grams; her blood gas readings were very good. She was very fidgety today and managed to escape from her restraints and push herself from her stomach to her side — fortunately she did not dislodge her tube.  We’re thinking of  putting some kryptonite in the isolette with her.

Ashley and Josh got to spend a quiet day with Lillian: today’s nursing team wasn’t comfortable with moving Lillian while she is on the respirator, so they weren’t able to kangaroo; but they are happy just to have had another day without much drama.

Thanks for your prayers and support.