Big Day for Carter!

Many of you have been following the story of Hannah's birthday twin, Carter. Born on the same day over a year ago, they both wound up in the same NICU. Carter developed an intestinal problem, which led to liver problems, which caused the family to relocate to Boston for treatment, and eventually Carter underwent an emergency transplantation of most of his digestive system back in May. He's been in the hospital for most of his life, the past few months recovering from the transplant.

Carter

Well, if things went as planned today, Carter and his amazing parents left the hospital and moved into an apartment in Boston, where they will adjust to life outside the hospital and prepare for the journey back to Texas. To say we've been looking forward to this day would be a vast understatement. Our next goal is for Carter to get back home to Texas and get settled in enough to have visitors. One little girl visitor, in particular. Can't wait for them to meet.




Hannah's been inventing little games for herself lately. One dinnertime game involves biting the spoon after each mouthful and not letting go. Click here to see some video (8MB) of that game.




Another favorite game is Hide-From-Daddy, which you can witness by clicking here. I edited out me saying "Peekaboo!" and "I see you!" every time she rounds the corner, because it was really loud, since I was holding the camera . . . but mostly because I sound like a complete moron whenever I talk to Hannah. She must think I'm impaired in some way, and is just entertaining me to be charitable.

Dad

A year ago yesterday, my father passed away, after years of declining health. He never got to meet Hannah . . . he was in a hospital in Wisconsin when she was born, trying to recover from the surgery that we hoped would give him back some mobility. He never did get back on his feet, and was gone a month later. I'm thankful that he lived long enough to hear that Hannah would survive, but regret almost every day that he's not around to see what a wonderful little girl she's become.




I have a slideshow running on the living room PC that has become an obsession for Hannah. It shows pictures of family, friends, vacations, pets and other animals, lots of pictures of Hannah, and of course pictures of Dad. She'll watch it for minutes at a time, squealing when she sees pictures of herself, her mom, or her favorite toys. When she bumps the mouse or keyboard and the screensaver disappears, she'll fuss and whine until the pictures come back. She'll eventually associate the faces in those photos with the faces that she sees when we visit or have visitors. And I look forward to the day she notices that one of those faces is one she's never seen in person, and I can start telling her all about Grandpa Minor: his garden, his fondness for dogs and children, and his heart so big that, even while he lay fading away, he worried most about his new granddaughter and her brother, struggling for a foothold on life a thousand miles away.

My cousin Greg sent us a photo today of Dad's grave up in Iron River. It was a small gesture, but one that was hugely comforting at this sad anniversary. The stones behind Dad's are those of my Uncle Jack (Dad's brother and Greg's father) and Aunt Judy, and my Dad's parents.



On a brighter note . . . I caught Hannah kissing the baby in the mirror the other day. Can't say I blame her; that baby in the mirror is awfully cute. Probably tastes a bit like Windex, though.

Toe-Biting Roomba

I was sitting at the computer the other day, minding my own business, when Hannah wandered up and bit my toe. That's the extent of our excitement these days, just the typical problems of keeping a newly mobile infant out of trouble. She's not happy unless she's pulling herself up to peek out a window, or over a chair or end table.

Anything on the floor is a baby magnet, and we've learned that if she's crawling around with one hand in a fist, it means she's found a scrap of paper or bug. As long as we pry those things out of her little hands often enough, she pretty much keeps the floors clean.

I've also started putting random baby-safe objects, like cups, rolls of tape, empty soda boxes, on the floor for her to find and play with, to keep her from exploring more dangerous options like outlets, computer wires, and cabinets. I sometimes feel like a fighter pilot, ejecting chaff and flares to distract the BB-391 missile on my tail.

Aunt Cat and Uncle Jon found an appropriate onesie for Hannah at the outlet mall the other day:

We filled up the wading pool and inflatable crab last week to let Hannah splash around a bit outside. She was also fascinated by the weeds growing up between the bricks in the patio, and she learned what a garden hose tastes like.

Be sure to check out Carter, Ashley, and Avery's blogs for updates on Hannah's friends.

I just noticed, when poking around in the subscriber's list, that several of you (most of my immediate family) who I thought were getting automatic email updates when the blog was updated, were actually not. I've reset those addresses so you'll get these updates by email from now on. Anyone else who is reading this on the web and would prefer to get an email anytime there is a new post (so you don't have to keep checking for updates), just click here and send a blank email to subscribe. It's safe and easy to cancel if you need to.

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.