Relaxing

Sometimes, you've got to get some liquid refreshment, stretch out and take a break.

Lillian Grace Denby Update: 11/12/2010

Just Bathed

Lillian Grace is 95 days old.

Ashley got up early, dragged her mom along and went to the hospital all ready to try Lillian’s first 9:00 am breast-feeding. The only person Ashley did not consult about this was Lillian, who quickly let her mother know that she is not in any way, shape or form a morning person. Despite the fact that Ashley first changed Lillian’s diaper, exercised her arms and legs, stimulated her feet and that the respiratory team switched her from C-PAP to nasal cannula, Lillian responded only with a few annoyed grunts and some scowls: she took a few sips from the offered breast, and went right back to sleep. So, after a bit, Ashley handed the baby to Nancy, got Lillian’s nurse to hook up the mechanical pump to feed Lillian breakfast, and went off to the lactation room to pump. Ashley will try again tomorrow morning; it may take a bit for Lillian to get used to the idea that breast-feeding time is going to be at 9:00 am instead of 3:00 pm.

Two Grandmothers & Lillian

About 10:00 am, Josh arrived with his mom, Peggy. Ashley and Josh went to bathe Lillian, and the two grandmothers (Peggy and Nancy) sat out in the Family Waiting Room. They had only waited a couple of minutes when the NICU clerk came and told the two grandmothers that they could go back and watch Lillian’s bath (normally only two family members are allowed back at a time), so they (not surprisingly) did. Lillian enjoyed the bath (at least most of it) very much, and Ashley and Josh used the new tub they brought from home: the nursing staff is having them use as many of the things they will use at home as is practicable. The focus is increasingly on preparing for the day Lillian will come home, though that’s still a number of weeks away. After the bath, mom, grandmoms and nurse dressed Lillian in a pretty polka-dotted dress. We added a new slide show of the bath: More Bath Time.

Grandma Peggy & Lillian

After bath time, Ashley and Josh went off to sign the lease and get the keys to their new apartment. The two grandmothers were forced to stay back with Lillian. Grandma Peggy got to hold Lillian for the first time; she thinks Lillian is okay — well, better than okay, actually — and she is impressed by how much Lillian’s grown (she now weighs 6 lbs, 7.7 ozs).

Once Ashley and Josh got the keys to their new apartment, the two grandmothers reluctantly left Lillian in the NICU and went to help begin the move, along with Josh’s sister Cari and her friend Sylvia. They moved quite a bit of stuff, and will finish tomorrow.

Thanks for your prayers and support!

Lillian Grace Denby Update: 11/08/2010

Filling Out

Lillian Grace is 91 days — 13 weeks — old.

Lillian’s Weekly Stats:

• Height: 45.5 cm (1 cm gain) 17.9 in
• Weight: 2790 gm (330 gm gain) 6 lb 2.4 oz
• Head Circumference: 29.7 cm (.2 cm gain) 11.7 in
• Milk Volume: 53 mL/3 hours (7 mL gain) 1.79 fl oz

One of the NICU staff who makes regular visits to Lillian and her parents is the Child Life Specialist II (hospital titles can be a bit odd). She helps monitor the developmental progress of each NICU baby; every week, she provides information on new behaviors to look for based on the baby’s gestational age and suggestions for new things for moms and dads to try out with their babies; today, she brought Lillian a mirror. Lillian is awake and alert and curious for longer periods; the mirror gives her something new to look at: herself. Lillian can also be introduced to some of her new menagerie of plush animals and other toys and begin to explore new textures and to see if she can pull toy ears off as successfully as she dismantles C-PAP tubes.

Waking Up

Lillian continues to make slow but steady progress on breathing: her supplemental oxygen needs have declined significantly over the past couple of weeks. Tonight the team is going to try her on a different type of C-PAP device that, if she tolerates it, can help compensate for pressure drops when she is wiggling or keeping her mouth open. Yesterday and today, she spent two and a half hours with only nasal cannula for support and tolerated it very well; beginning tonight, the team is adding an additional two-hour session with just nasal cannula, so she’ll be doing a total of four hours a day off C-PAP. As she continues to grow and build muscle mass, the plan is to gradually increase her time on nasal cannula in both sessions.

When Josh arrived this afternoon, Lillian had a present for her dad: a full and very stinky diaper. Up until now, Josh had somehow missed out on the poopy diaper change (though he’s changed plenty of wet ones). Ashley reports that he handled the change with aplomb, and was quite pleased with himself afterward.

Thanks for your prayers and support!



Lillian Grace Denby Update: 11/2/2010

 

Breast-Fed & Happy

Lillian Grace is 85 days old today.

Ashley attended grand rounds today and discussed Lillian’s progress with her medical team. Dr Mesvin said that 85 days ago, when Lillian was born, he was not sure that Lillian would go home; today, he is confident that she will, most likely before Christmas. As soon as space is available, Lillian will move from her home in the Daisy Room of Level 3 (Critical Care) into a shared room in Level 2. She, as we have mentioned, is no longer classed as a critically ill baby; she’s now a “grower and feeder” — she weighed 5 lbs 7.5 ozs this morning, and eats 48 mL of milk at each feeding.

This afternoon, instead of giving Lillian a non-nutritive feeding, her team had her try feeding from a full breast. With the lactation nurse, the respiratory therapist and her care nurse all carefully observing, Ashley got Lillian in the football hold: Lillian latched right on to the nipple and proceeded to suck and swallow. She dabbled around for about 20 minutes and got 4 mL or so of milk down — a very successful first attempt. For the next several days, Ashley will continue to pump first, but not pump herself quite dry; then, the baby will get to practice, as in non-nutritive feeding, but with a small amount of milk as a tasty reward and with which to work on swallowing while breathing at the same time (a very useful skill, we’re told).

Lillian spent about an hour and forty-five minutes on the nasal cannula today: she’s slowly increasing her time on it. Her respiratory therapist increased the size of her C-PAP face gear as she’d outgrown the old one. Lillian was as pleasant and calm today as she was fussy and fractious yesterday — except when she was hungry!

Thanks for your prayers and support!

 

Lillian Grace Denby Update: 10/7/2010

 

Pink Polka Dots

Lillian Grace is 59 days old.

Lillian had a quiet day today: she’s back to 3 lbs, 10 ozs, and continues to do well on the bubble C-PAP; her oxygen saturation levels are not quite as steady — this is what we expected, as the effect of the steroids wears off — but they are still good. Her oxygen support ranges from about 30–45%, depending on what she is doing — when she is really fussy or active, the respiratory team increases support. She is already expert at dislodging her C-PAP mask — Ashley got her a pink polka-dotted shirt that has sleeves with pouches to cover her hands; she thought that might curb some of Lillian’s mischievousness; but that was a forlorn hope — Lillian likes to keep her nurses and respiratory therapists hopping. Lillian’s dietitian increased her milk volume to 30 mL and she continues to handle it very well; now that she is older, she doesn’t always poop everyday — but when she does, the volume is large and the smell is powerful. She has regular, loud bouts of flatulence: she is very proud of these productions.

 

Lillian's Toys

This evening or tomorrow, the nursing team will give Lillian her first round of vaccinations. Michelle, one of the nurse practitioners, warned Ashley that Lillian will likely be fussy for a few days after receiving them, and the team may have to increase oxygen support while her immune system assimilates the vaccines.

We’ve added a brief video of Lillian in Ashley’s arms this afternoon; we hoped to catch her making a cry or two, but she was happy and quiet all afternoon. We’re going to keep trying to capture her voice! https://thedenbyclan.wordpress.com/2010/10/07/lillian-and-ashley-a-video/

Thank you 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.