Lillian at the End of January 2011

 

I'm breathing room air for a couple of hours a day now

With one of my great-grandmothers

Out for a walk

 

 

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 at Home: 1/21/2011

 

Life is good!

A few minutes with no tubes or tape

 

 

Lillian Grace Denby Update: 1/18/2011

Pretty in pink

Lillian Grace is 162 days old today; her adjusted age is 6 weeks. She’s been home from the hospital for 4 weeks!

Lillian’s Official Stats (measured at Texas Children’s):

• Height: 57.1 cm (no gain) 22.5 in
• Weight: 5005 gm (271 gm gain) 11 lb
• Head Circumference: 35.6 cm (no gain) 14.0 in

Lillian went to Texas Children’s Clinical Care Center to meet her pulmonologist, Dr Barbara West, and to test her oxygen needs and lung development. She wasn’t allowed to eat after 7:00 am, so by the time she got into the pulmonology diagnostic center and got hooked up to the monitors, she was decidedly not happy. However, she got to eat at about 10:15 (much to the relief of her mom and everyone else on the 9th floor). After eating, she went to sleep and slept for most of the rest of the 4 hours of the test.

As a result of the test, Lillian’s oxygen flow level is now set at 1/8 liter (down from 1/4 liter). She’ll get a pulse oximeter in place of her apnea monitor, and she’ll start spending part of the day on room air. Her mom and dad will monitor her blood oxygen level using the pulse oximeter; if it remains above 93%, she’ll be able to stay on room air during the day; for now, she’ll continue on supplemental oxygen overnight. Over the next month or so, Ashley and Josh will work on slowly increasing Lillian’s time on room air. She’ll still have the cannula on for now, even on room air — removing the tape that holds the cannula in place too often would be hard on Lillian’s skin.

Lillian’s days at home have been blissfully uneventful (that bliss is tempered a bit by Lillian’s night-owl tendencies). Every now and then she bestows a radiant smile on one of her admirers, but otherwise she concentrates on eating, squirming and sleeping. She loves her nightly bath, and listens intently when someone sings to her or reads her a story. Her mom puts Lillian in her K’tan baby carrier while doing chores around the apartment: Lillian appears to be very interested in pie and cake baking. For forays outside the apartment (not many yet), the stroller is the carrier of choice: you can put monitors and oxygen tanks in the stroller; with sling type carriers you have to hang those off your shoulders when going out.

Thank you for your prayers and support!

With Mom & In My Sling: 1/17/2011

 

This is very comfy

 

 

Friday Night Bath: A Video 1/14/2011

Lillian After Her Bath: 1/14/2011

 

I'm living the good life...

Ready for the evening...

 

 

Lillian Grace Denby: 5 Months Old 1/9/2011

 

Smiling at Grandma Nancy

Me and my dad

 

 

Lillian Grace Denby Update: 1/7/2010

In my bouncy thing

Lillian Grace is 151 days old today; her adjusted age is 5 weeks and she’ll be 5 months old on Sunday! She’s been home from the hospital for 2 and 1/2 weeks.

Lillian’s Unofficial Stats (measured at home):

• Height: 57.1 cm (1.2 cm gain) 22.5 in
• Weight: 4734 gm (182 gm gain) 10 lb 13.5 oz (official: weighed at doc’s)
• Head Circumference: 35.6 cm (no gain) 14.0 in

Here’s what babies who are 5 weeks old like to do: eat; roll over; eat; hold their heads up; eat; babble and grunt; eat; pass gas; eat; sleep; eat; fuss; eat; stare at their parents; and, of course, they like to eat. Even premature babies who are now actually almost 5 months old but only 5 weeks past their due dates like to do these things; and these babies, who spent such a very long time in isolettes and hospitals, love to be held and sung to and talked to most of all — even more than they like to eat.

Sometimes I have to yell to get people moving

Lillian loves being at home. She can always find a mom or a dad (and once in a while, a grandparent) to hold her, sing to her, feed her, tell her a story — or just chat with her when she’s in the mood at 2:00 am. She’s got a floor gym with dangly things to touch and kick; a swing in which she can float through the air; a bouncy thing to rock and vibrate her to sleep. Three cats patrol the apartment, not sure yet what to make of the baby newcomer, though they suspect that Lillian’s tubes and wires are there just for their amusement.

 

On my mom

On Friday, Lillian and her mom made a quick trip to the doctor. Lillian appeared to be a bit congested and had what sounded like rattling in her chest. Happily, the doctor found nothing in her chest to worry about; the congestion is likely a result of irritation from her nasal cannula and of the drying effect of un-humidified oxygen. He suggested putting a drop or two of saline solution in her nostrils to help with dryness.

Thanks for your prayers and support!

Lillian Grace Denby Update: 1/3/2010

 

Riding in the car

Lillian Grace is 147 days — 21 weeks — old today.

Lillian enjoyed staying up to welcome the New Year in on Friday night; once she’d made sure that the New Year was indeed here, she enjoyed keeping Mom and Dad up discussing it for many, many hours — we think her parents didn’t enjoy it quite as much as did Lillian, and they certainly forgot to record the many predictions and resolutions she shared with them in the early hours of 2011; translation can be difficult when you are bone-tired.

 

Play time

Lillian’s behavior is pretty typical for a one month old baby; of course, one month is her adjusted age (ie., calculated from her due date); her actual age is coming up on 5 months. Life has settled into a routine among the Denby clan: Lillian sleeps, eats, plays and poops; Mom and Dad feed her, play with her and change her; now and then they catch an hour or two of sleep. But, parental exhaustion is no barrier to parental joy.

Thanks for your prayers and support!