Just Another Baby

When Hannah came home nine months ago after three months in the hospital, she was on 7 medications: five that we drew up with syringes and measured into her bottles and two that she inhaled through a nebulizer. And then of course there was the oxygen cannula taped to her face for the first three months. These were all prescribed when she weighed six pounds, so as she grew to her current weight of 18 pounds, those doses were all effectively reduced to a third of their original strength, measured by body weight. For the past few months, we've been down to the last two medicines, both treatments for gastric reflux, common in preemies whose digestive systems had to start work before they were fully formed. Three weeks ago, we stopped the Reglan, which speeds us the contractions in the digestive system (peristalsis) slightly, so the stomach contents dump into the intestines faster, reducing the likelihood that they will back up into the esophagus and cause reflux. The normal approach is to stop the meds and wait a couple weeks to see if it had any negative effect. For example, the first few times we stopped the Reglan, Hannah seemed to spit up a bit more, so we resumed the dose.

This last time we stopped the Reglan, she seemed just fine. So, last Tuesday, we stopped the last of her medicines, Prevacid. Prevacid is a proton pump inhibitor, which, although it sounds like something Han Solo would ask Chewie to patch into the hyperdrive, is actually just a medicine that decreases stomach acid so that if "spit happens", it is less irritating to the walls of the esophagus (by slowing down the cell membranes that pump protons in the stomach lining to increase acidity, hence the name).

Anyway, Hannah has gone several days now without the Prevacid, and seems just fine without it. This is a milestone, because the Prevacid was the last bit of baggage from the NICU that served as a reminder that she was born three and a half months early. Now that it's gone, she is officially "Just Another Baby", no different really than one born full term.

Except of course that we appreciate her so much more, knowing how much she has overcome and how lucky we were to take her home with no long-term disadvantages.

Here's a video I put together for the grandparents, of just another unmedicated baby, smiling and laughing.

Steven

We visited Steven yesterday. It was blazing hot when we got there in the late afternoon, but some clouds drifted over as we left the car, providing us with shade and a cool breeze while we sat with Hannah and her brother. Hannah is not normally one to sit still, but she sat quietly and took in the rustling trees and thick green grass, while she waited for us.

The most painful thing about visiting Steven is the long row of other tiny graves in that section of the park, some with only one date on the marker, and some with dates a year apart. Those are the ones that make me treasure Hannah the most, and ache for the parents that had to part with their children after getting to know them for a year. Steven, barely a week old, had not yet opened his eyes or made a sound when he was taken from us. But even so, his passing was unbearable.

Cat and Jon, knowing we needed a distraction from this unhappiest of anniversaries, invited us over for pizza and a movie last night, so we went straight there from the park. There aren't many things I enjoy more than sharing Hannah with others and watching her interact with them, so that was a good way to end the day on a high note.

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In other news . . . Sidney and Sandia just got back from out of town and gave us a CD of photos they took at the birthday party. It was hard to pick out just a few to post here, but here they are:

Water, Water, Everywhere

Hannah got her first trip to the pool this week, courtesy of Aunt Cat (above) and Uncle Jon, and I think it's safe to say she's not afraid of water. She had a great time splashing and kicking, and was even more amused when she noticed that Daddy forgot to take his cell phone out of his pocket before wading in (I needed an excuse to upgrade anyway).




On average, she'll have to settle for baths in the kitchen sink, but she seems to like that OK, too. We'll have to figure out a way to keep her away from the faucet handle, though, because she thinks it's a shiny new toy.



Not sure what this was about. Maybe she was taking a whiff of the burgers Jon was grilling.



I've learned that if I just take random pictures of Hannah, she cycles through about a hundred expressions every minute.

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Some sad news . . . Mom and Rena's dalmatian Ginger passed away last Thursday, of old age. I happened to catch a picture of Hannah and Ginger a few days before. Ginger was an exceptional dog and lived a good life. We'll miss her a lot.



Here's a photo from early 2005, of Dad, Pluff, and Ginger. I have to assume there was a happy reunion last week.

Hannah's First Birthday

This time last year, I had no idea what the future held. I was the unprepared father of a 1.5 lb daughter and a tiny son less than half her size. Carla was still sedated, and I had to repeat the news to her several times that first day, because the drugs kept erasing it from her mind each time she slipped back under. Usually quick with answers or a Google search, I kept the statistics to myself this time. Preemies this small, if they survived, rarely escaped the hospital without at least one lifelong disability.

The next few weeks are just a disjointed slideshow to me now, a montage of different hospital rooms and preparations for months of uncertainty, which was all the doctors would commit to. The joy of parenthood was replaced with a weird mix of cautious congratulations and unspoken condolences. I have a vivid memory of mowing the yard a few days later while Carla's parents stayed with her at the hospital. I realized that no matter what happened, the yard would still have to be mowed each week, whether we had two disabled children to care for, or one, or none. Life would go on, but the prospect seemed unbearable. I suddenly saw the world through the eyes of parents whose children died in Iraq, or natural disasters, or childhood diseases. I worried not only about losing Hannah and Steven, but also of losing Carla's beautiful smile to the lifetime of despair that seemed just around the corner.

At one point, the doctors said that Steven was actually doing a bit better than Hannah, but they didn't know how they would feed him if he survived long enough to use up his internal stores. They simply didn't have tubes small enough to fit in his veins. Hannah had a lung leak and her heart had not finished preparing itself for life outside the womb. Where a few weeks before I was obsessing over the tiny fluctuations in Carla's thyroid function that might erode away the children's future IQ scores, I now decided that I only cared that the children be safe and happy, whatever disadvantages life dealt them. I knew these children would be lucky just to survive.

A year later, as you faithful readers well know, we have only one child. But oh, what a child she is. Perfect in every way, including the tiny scars from heart surgery, lung repair, intravenous feed lines, and scores of IVs in hands, feet, and scalp. She somehow dodged all the bullets of prematurity and is now smiling and busy exploring the world, oblivious to the turmoil that surrounded her birth.

I have always respected the sciences and the wonder of life itself, and owe a lifetime of gratitude to the medical professionals who kept Hannah safe and knew just what to do, to allow her tiny body to adapt outside the womb. But I now have equal respect also for the powers of prayer and love, and the people who brought them to bear on our behalf. I may not know how it works, but I see the results every time Hannah smiles and laughs at me from across the room.

As healthy and happy as Hannah is, I never forget how lucky we are. We know several families whose babies are still struggling with health issues, and even though I'm sure they will pull through and overcome the obstacles, it doesn't seem fair that such good people and their innocent ones have to deal with such stress. Please say a prayer or spare a thought for all the parents who, at this moment, are wondering if tomorrow will be a good day or one full of challenges.

There is another anniversary coming up next Tuesday that will be very hard on us, and I don't really know how we'll handle it. I suspect, though, that we'll get a lot of help in the form of innocent impish grins and big gummy smiles, and all will be right with the world.

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We went home to Shreveport/Bossier last weekend, and celebrated Hannah's birthday with many of the people that have been on Team Hannah from day one. They we came back to Plano and did the same with the local chapter of the team. There is no better feeling than being surrounded by good friends and close family, unless it's being able to introduce your child to those people, knowing that each of them is an instant friend and ally if she ever needs more than we can provide.

Hannah has been receiving gifts all year, and of course some of you couldn't resist giving even more on the occasion of her birthday. But I think her best birthday gifts were being able to play on the floor with NICU-mate Ashley, and the continuing progress of her birthday twin Carter, who celebrated his birthday in Boston, where he is recovering well from a multi-visceral transplant. Next year, all three will be on the floor together.

That's Hannah on the left and Ashley on the right. I thought Hannah's eyes were stunning until I saw Ashley's.

Hannah was baptized last weekend at Noel United Methodist in Shreveport, our church-away-from-home where Carla grew up. We're trying not to take it as a bad omen that the sermon that day was about the "Mark of the Beast", and that we sang hymns 666 and 333. Pure coincidence, I'm sure. :-) Actually, if you knew Pastor Dave, you'd know it was a lighthearted jab at all the apocalyptic silliness. One actual coincidence, though, is that Dave lived two doors down from me when I was growing up in Bossier. Small world.

The Wonder Year

July 15th will be Hannah's first birthday. It certainly doesn't seem like a year has gone by, but that's probably because half of it was a blur. We're having a couple of informal get-togethers Saturday the 12th from 1pm-4pm at Karl's mom's house in Bossier, and Tuesday the 15th from 6pm-9pm at our house in Plano, to let Hannah meet more of the folks that helped us through the past year. If you're going to be in the area, we'd love for you to stop by. Email us if you need directions or more information.

These won't be parties, and we have nothing planned, so you can stop by for five minutes or three hours, late or early, whatever fits your schedule. And please don't bring gifts, because you've all been too generous already. Just be prepared to let Hannah grab your glasses off your face, pull your hair, and untie your shoes.

Here's a picture of Hannah's tiny kimono that Kenji and Yukiko brought from Japan a few weeks ago. It ties in front and on the sides just like a real one, but still has snaps at the bottom for quick diaper changes. Very cool.


She's still trying to find a way into the coffee table. She still checks the knobs occasionally, but has moved on to plan B, which is apparently to chew her way in.


Realizing that chewing through might take a while, and having noticed that most of her toys can be toppled over pretty easily, she tried that with the coffee table, too.

The sunbeam through the skylight is always fascinating, and provides some interesting photo ops.


Her Easter Bunny from Aunt Rosemary seems to be infested with sleepybugs, because it sees a lot of use as an impromptu floor pillow.


Carla's parents were here for a couple days on their way back from Alaska. Hannah was starving for attention the whole time they were here, of course.



She knows enough to pick up her pacifier and put it in her mouth, but the details of exactly which part goes where are still a bit unclear, apparently.


These may only be of interest to grandparents, aunts, and uncles, but you can click these links to see some videos of Hannah laughing and crawling.

I've added a couple links to the "Friends" section to the right: another of Hannah's NICU-mates (Ashley) and our friends the Conlys, from whom Hannah inherited a bunch of toys, clothes, and equipment. Check them out for an extra dose of cuteness. If you have a blog for your kiddos, please send me the address so I can include it here.

Carter is having some problems with his kidneys that are delaying his release from the hospital, but it's something that will heal completely, given time. He just needs a bit more time to recover than we were hoping for. Please keep him and Avery in your prayers, as they heal.