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!

A Letter to Lillian on the Occasion of Her 4 Month Birthday

 

4 Months Old

Dear Lillian Grace,

Another month gone and my, how much progress you have made! You are taking huge strides on your journey home; your dad and I could not be more excited. The truth is our house has felt empty since the day you were born. You are not with us when we wake up in the morning: that is very hard. The joy we feel when we are with you in the NICU makes it difficult to go home.

You love to play, to eat and to be held. You love people — you stare at our faces intently and with great curiosity. When you went for your MRI the other day, you took the longest trip of your short life — and loved every minute of it. As you rolled passed in the infant transporter, you took in all the sights, all the while sucking calmly on your pacifier.

As I held you today, once again I could not help but marvel at how big you are. The NICU staff and your visitors remark time and again on how much you’ve grown; your dad and I will never take your size for granted. I remember holding you for the first time 10 days after your birth. You seemed so tiny and fragile; but you grabbed on to me and you never let go. The presence that boomed out of your tiny body has grown with you; I swear that I can feel you as soon as I step out of the hospital elevator. We have yet truly to capture the mischievous looks that you give when you play — I am not sure that there is any camera that could capture them.

First & Current Diapers

Your dad and I are very proud of you. To say we cannot wait to take you home is an understatement. Soon the day will come when we will load all of your stuff from the NICU into our car, put you in your car seat and drive you home where you belong. While everyone warns me how hard it will be when you are home and we don’t have your wonderful nurses to help (and I am sure it will be), I don’t think I’ll ever admit it. For four months our dream that you would come home seemed remote and far-off; now, to have it so close to coming true fills us with joy. Your dad and I love you, tiny miracle. You have enriched our lives in more ways than we ever could have imagined. We love being your parents and await your home-coming with bated breath.

Love

Mom and Dad

Lillian Grace Denby Update: 12/09/2010

With mom

Lillian Grace is 122 days — 4 months — old today!

Lillian’s mom Ashley spent the morning waiting for repairmen at her apartment and interviewing pediatricians (a task that’s taken on new urgency with the possibility of Lillian coming home before Christmas. She found a pediatric group near her that welcomes babies born prematurely (one of the office staff is a mom of two early preemies). Lillian has a pediatric pulmonary specialist lined up already (Dr Barbara West) and she sends a very big thank you to Ann Saye who went out of her way to help Lillian’s mom connect with the right pediatrician. Yesterday evening, the NICU team told Josh to bring Lillian’s car seat: they will test Lillian in it at least a couple of times to make sure it’s right for her — a car seat that’s passed this test is a hospital requirement before they will release a baby, and it’s another sign that there really is a chance that Lillian will celebrate Christmas in her own home.

Chillin' in the NICU

The switch to breathing off the wall has so far gone very, very well. Lillian started at 1 liter flow and her respiration, oxygen saturation and heart rate all were excellent — good enough, in fact, that this morning they dropped her to .75 liter flow, and her readings have remained excellent. Since last night, her feedings have also gone very well: she’s woken up every three hours and finished all her bottles, and fed very well from the breast this afternoon; she has slept soundly in between feedings. Today’s nurse, Stephanie, says that she was quite fussy this morning; finally, a bit exasperated, Stephanie picked her up and told her: “Lillian Grace, it is time for you to be quiet and get some sleep!” Immediately, Lillian closed her eyes, stopped fussing and slept for the next two hours. No odds yet on how likely she is to be that obedient for mom and dad.

Testing my new bed

In addition to her new car seat, Ashley brought up the newborn bed Lillian will use for her first month or two at home for Lillian to try out. It’s very portable, angled as recommended for preemies, and will fit right next to Ashley and Josh’s bed (no word on who will have to get up to get her in the middle of the night). Lillian tried it out this evening and appeared very happy with it.

Thanks for your prayers and support!

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 Grace Denby Update: 11/18/2010

Good morning

Lillian Grace is 101 days old today.

When you’ve got a baby in the NICU,  you find yourself saying the same things over and over: as she moves from one stage to another you’ll find something different to repeat, of course, but while she’s in a given stage your repertoire of incisive observations will be limited and you will repeat them, sometimes just to have something to say. Your friends will nod their heads indulgently and pretend that your observations are as witty and probing the 27th time you make them as they were the first; other people will go to some effort to avoid you and your sparkling, if limited, conversation.

Trying to pull dad's beard

At this stage of Lillian’s life, 38 weeks from conception and 3 months from her birth, what we find ourselves repeating is that Lillian “becomes more baby-like every day.” We could as easily say, “Pinch me, I think I’m dreaming.” For two months, tiny Lillian was asleep almost all the time, silent because of the ventilator tube, almost always covered and in the dark, unable to stand much stimulation, one breath away from crisis. Now, all of a sudden (or so it seems) she is a big, lively, loud, fussy smiling bundle of energy and movement… she is interested in the world around her, she smiles, she cries, she touches and pulls: she does all the things newborns are supposed to do (though she has more tubes and wires) and she is fiercely attached to her mom and dad. At night, she does not want her folks to leave; she wants her mom or her dad to hold her and rock her and sing to her; she wants her mom to feed her. It’s all a wonder, and indescribable: so we just say, over and over, “she’s becoming more baby-like every day.”

Thanks for your prayers and support.

Fight For Preemies

Lillian 100 days ago

Three months ago Josh and I discovered the world of premature babies. When you find yourself tossed into this world, you find that it’s an overwhelming place: so much information to absorb and so many fears to face. But the preemie community welcomed us with open arms; we have so many new and wonderful parents and friends in our lives; many have traveled much harder roads than we have, yet they reached out to comfort and support us. We are also deeply grateful for (and humbled by) the amazing outpouring of support from so many friends and family.

Today is Prematurity Awareness Day. 1 in 8 babies is born premature. I knew nothing of this world in which incredibly tiny babies have to fight to breathe, eat and live until I watched my own amazing child fight harder than I could ever imagine a 1 pound, 8 ounce human could fight. Today I fight for Lillian and other babies like her because all babies deserve the best chance at life. Go to www.marchofdimes.com to find out what you can do to help. –Ashley