Tuesday, June 29, 2010

Beach Bunny

A couple of weeks ago, Lexie saw the ocean for the first time.

She crawled in the sand.

And she went with daddy to the Beaufort Maritime Museum.

More to come soon.

Sunday, May 9, 2010

Feeding Delay

Lexie is almost 16 months old. She has never eaten a Cheerio, puff, or cracker. She won't eat pasta or rice. If anything other than milk or pureed food enters her mouth, she cries hysterically and/or throws up. Sometimes she does that even with purees.

These are common problems for babies who were tube fed, as well as babies who have or have had reflux. We decided to get some professional help, in the form of an assessment from the state's Early Intervention program.

A team of two therapists and a social worker evaluated Lexie during a two-hour appointment. They documented her strengths (she's advanced in communication skills) and they noted their concerns. The first sentence read:
Alexandra has a diagnosis of prematurity, which may affect her development for many years.
I felt both validated and saddened by that sentence. I felt validated because, when I tell people about Lexie's challenges, they often like to say something to the effect of, "yeah, but full-term babies have those problems too." I don't understand the urge to minimize the effects of prematurity. Yes, full-term babies have problems too, but how is that relevant to little Lexie? Maybe it's a misguided attempt to make me feel better about the situation.

At the same time, it was hard to read that statement. I knew it was true, but seeing it in black and white made it seem very official. I'm still hoping that this is the extent of her issues (*hope hope hope*) and that she won't have any learning challenges when she gets to school. I don't like to think about that possibility, but I know we must be vigilant. Whatever happens, we'll get her the help she needs.

The therapists estimated that Lexie is at a 7-month level in the area of "self-help skills: feeding," which qualified her for speech therapy. (It's not for speech -- speech therapists actually work with all manner of oral disorders in babies, including feeding issues.) They also diagnosed low muscle tone, but she is doing the right things on her own to build up her strength, so no therapy will be required for those particular issues.

The assessment was a month ago, and we are still on the waiting list for a therapist. Wish us luck -- I'm really looking forward to seeing Lexie eat a cracker on her own some day.

Wednesday, May 5, 2010

Messages From Beyond

There's a song in my mom's family that seems to play during times of loss or other momentous occasions.

It's called "When Will I See You Again" by The Three Degrees. It came out in 1974, and it isn't a song you hear often. And yet, in my family, it always seems to materialize on the radio as the soundtrack to major events. A message from above, if you will.

My mom first noticed it right after her mom died in 1978. At the time, the song was fairly current. Nothing unusual there. It was just a song that reminded her of her mom.

Eight years later, we were driving home from my grandfather's funeral (my mom's dad), and I suddenly noticed my mom was sobbing. And then I noticed the song playing on the radio.
When will I see you again?
When will we share precious moments?
Will I have to wait forever?
Will I have to suffer and cry the whole night through?
Through the years we noticed it playing at important moments: the day of my uncle's death ... on my grandma's birthday ... the first time in 15 years that my mom and her sisters had all been together, right as my mom was leaving ... there are more, but you get the idea.

My rational self knows this is probably a case of finding a pattern because we're looking for it. But the timing is always so unlikely. And I, for one, rarely listen to channels that play that kind of music.

On the day Steve left for Mississippi, his dad was on life support in the ICU but we didn't know what had happened, and we didn't know the prognosis.

When I turned on my car radio as I left work the next day, "When Will I See You Again" piped through my speakers. My heart sank.

I knew Steve's dad was gone.

Monday, May 3, 2010

Life Gets in the Way

I missed an entire month.

I have a good excuse. For the first half of the month, Steve was in intensive training that kept him working very long hours, so blogging time for me was nonexistent.

And then, Steve's dad died.

Steve's dad had been descending further and further into dementia over the past few years; he had early-onset Alzheimer's disease. He had trouble speaking properly and was very confused the vast majority of the time. He'd also been wandering, and had started walking around on the highway and refusing to come home. The situation had become unsafe. Steve's mom had checked Steve's dad into the hospital in the hopes of medicating him to calm him down to the point that he could go into a nursing home.

He'd always said he didn't want to go into a nursing home. Most people who knew him actually thought he'd like it there once he got used to it, because he was very extroverted. In a nursing home with a good dementia program, he'd have people to talk to all day long -- fellow patients who wouldn't remember that he'd already told them something or who wouldn't notice if he wasn't making any sense. But he seemed to have an idea in his head about what it would be like, and it brought him to a panic whenever he thought of it. So Steve's mom kept him at home, and every day he wandered.

For a couple of years, he had been walking miles and miles daily through the dirt roads outside his small Mississippi town. We had worried about him constantly. At his viewing the night before the funeral, several distant neighbors showed up unexpectedly. They said Steve's dad had been visiting them regularly on his long walks. One family said he used to come and sit on their porch. The first time, they called the police. But he came back again, and the neighbors realized he was just looking for company. They said they often sat with him and talked. Turns out, a lot of people were watching out for him.

His demise was lengthy, but even still, we had expected it to take years longer. He was only 65 and was in very good physical shape, no doubt thanks in part to all the walking. The end, when it came in the form of a pulmonary embolism, was sudden and unexpected. I don't think it's callous to say that many family members were relieved at how he died. He never forgot his family. He never became incapacitated. He was able to meet little Lexie and he knew he was her grandfather (referring to himself as "paw paw").

Lexie stayed in Virginia with my parents while I made a whirlwind three-day trip to Mississippi. Steve comes home tomorrow after what seems like a long time away.

RIP, paw paw.

Wednesday, March 31, 2010

Spring, Finally

In an attempt to try a new route from a client meeting to my office, I inadvertently ended up in downtown DC. As locals know, the traffic during the annual Cherry Blossom Festival is no picnic, and this little detour cost me an extra 35 minutes. Sitting in the traffic, I noticed small white flakes flying past my car window. My brain automatically associated them with snow -- we had so much this year, at times it almost seemed spring would never come. But of course, they weren't snowflakes.
They were cherry blossoms.

Saturday, March 20, 2010

More Gratuitous Lexie Photos

If Lexie had been born on her due date, today would have been her first birthday. This makes her one year old, adjusted, and her progress is measured against that of a true one-year-old child. She's on target in most areas, but eating is still a big problem. She is stuck on purees and oatmeal. She won't put food in her mouth and throws up or cries like crazy every time we try to put something solid like a cheer.io in her mouth. She also won't use a sippy cup. We had her evaluated last week, and she has been approved for early intervention services from the state. I'm relieved that we'll be getting her the help she needs, but I do wish she didn't need it.

In the meantime, she has learned to root for the New Orleans Saints.

And she has learned to root for the Syracuse Orange.

She's also been playing her great grandma's piano.

I think she's doing pretty well, all things considered.

Sunday, February 28, 2010

Another Anniversary

A year ago we brought Lexie home from the NICU. She spent 6 weeks there healing and growing. When she was there, we stayed informed of her status and the minor procedures she underwent, but I didn't get too deep into the details. I just mentally couldn't go there. That's why I don't know for sure about what happened to her in the hours after her birth, and I didn't know for sure what the possibilities were for complications in the weeks after her birth, and I didn't know specific details about how procedures like feeding tube insertions were performed.

A couple of months ago the (in)famous Duggars welcomed a preemie into their gigantic family. I never thought I'd watch that show, but since the arrival of 19th child Josie at 25 weeks gestation, I've been tuning in. I'm not so interested in the family's activities, but I've been watching the NICU footage carefully. I've now seen a feeding tube insertion on TV, and I know how far down it goes (far -- to the small intestine). I've seen this little TV preemie encounter complications that we avoided, but now I understand how they occur, and I realize how lucky we were that nothing serious befell Lexie during her time in the hospital. I now understand that when the nurses said "we're giving her .4 ml an hour of milk, and we'll see how she does," they were watching for a bowel perforation or necrotizing enterocolitis, in which the intestine begins to die. We didn't dig any deeper and just happily accepted it each day when Lexie did well and her feeds were increased.

I'm glad I didn't know that much about it at the time.

Friday, February 12, 2010

My Funny Valentine

I don't talk too much about Steve in this space, but in honor of the upcoming cliche'd holiday I thought I'd talk about one of his best qualities, the one that drew me to him and keeps us close even while we seem to spend all our time working and taking care of Lexie. He has lots of great qualities -- he's intelligent, curious, and a great dad, to name just a few. But the quality I want to talk about here is his understated sense of humor.

When we first met, Steve was the ultimate gentleman, and he kept his sense of humor under wraps. It was around our third date that he really made me laugh for the first time, telling a story about how he'd gotten to hold a friendly three-toed sloth in South America, ending with the opinion that it would be the best pet ever. When I asked why, he said, "because it hardly ever goes to the bathroom."

He also re-enacted a later encounter with an UNfriendly wild sloth, which he and his officer friends were trying to poke at while they smoked cigarettes near a pier off the Panama Canal. That sloth tried to claw at their faces. But being a sloth, the attack went in super-slow motion -- snarling face, nasty-looking outreached claw and all.

Steve has a talent for defusing my irritation. A couple of summers ago, he took to leaving his flip flops in the middle of the living room. I finally complained that they were making me trip. He looked at me solemnly: "Me too." I laughed. He started putting them under the couch instead.

When I came home from the hospital last year, the house was pretty dirty. After a couple of weeks (during which I was recovering from an emergency C-section), I pointed out that there were dust bunnies the size of tennis balls under the dresser.

"You think that's bad?" he asked. "You should see under the bed."

Happy V-day, Steve. I couldn't imagine it with anyone else.

Saturday, January 23, 2010

One Year Old, a Preemie Birthday

Last week, we celebrated Lexie's first birthday. She didn't really pick up on it, of course, but it was another milestone we weren't sure we'd ever achieve when I went into preterm labor at 22 weeks.

We kept it all low key. I didn't want to make a big deal out of the day, because it's not the same for preemie parents. I don't think back to the day of her birth as a day of joy and expectation. I didn't have the Hallmark "honey, it's time" moment where the very-pregnant mom-to-be picks up her already-packed overnight bag and waddles out to the car for a quick ride to the hospital and a normal birth experience. I don't have memories of smiles in the delivery room and I didn't have my baby placed on my chest right after she was born. I didn't bring my baby home a few days later to a perfectly finished nursery.

Instead, I waited in terror to hear whether my baby cried, waited prostrate and desperate for a report from the doctor on how she looked, knowing she wasn't ready to make it on her own after only 30 weeks inside me. I was so relieved when I heard Lexie cry after she was pried out of me (she was stuck behind my pelvic bone due to my unicornuate uterus). She was blue -- a giant bruise from the unusually violent c-section delivery covered three-quarters of her head and half her torso, which is why I won't be posting those pictures here. A few moments after she was born, I heard a nurse say "CLEAR!" and I panicked as I lay there paralyzed by spinal anesthesia. The first thing I thought of was the heart paddles. But everything was fine; it turned out that they were referring to her mouth and nose being clear of fluid.

She did require extensive medical intervention. Her Apgars were lousy -- she started at 4 and moved up to 6. I'd had two steroid shots to boost her lung function at 23.5 weeks, but the effect had worn off by 30 weeks. I got another shot that morning, but it wouldn't have taken full effect that quickly. I believe she had surfactant pumped directly into her lungs once she was put on oxygen. I wasn't allowed to hold her for days. She was so tiny and jaundiced and limp lying there in her isolette. She cried like crazy under the jaundice lights for more than a week. All in all, it's not an experience that lends itself to celebration.

Below, tiny Lexie a year ago today, at age one week.

For her birthday last week, my mom brought Lexie a balloon and we put a cupcake in front of her. She isn't able to eat anything solid -- anything with chunks makes her throw up -- but she messed around with the cupcake. She played with a couple of new toys, and we called it a day.

I'm so thankful to have her here and I'm thankful she is doing well. Next year maybe we'll throw a big party. But for now that's not something I can handle. Not just yet.

Monday, January 11, 2010

Why I'm Not Voting Tomorrow

A few weeks back, I noticed we'd been getting a lot of phone calls -- maybe 5 at that point -- from the Dave Marsden for Senate (VA) campaign. (There's a special election to fill the seat vacated by the guy who won the Attorney General spot.) Some calls featured actual people, some were recorded messages, and some were fake polls that ended with a veiled question that essentially meant "Don't you think it would be a great idea to vote for Dave Marsden?" It was starting to get annoying, so the next call we got, I told the woman that if I got one more call from the Marsden campaign or even ABOUT the Marsden campaign, I was not going to vote that day.

This is a big deal for me. My grandfather was a state representative in Massachusetts. I take my civic duty very seriously, and vote in every primary. I sometimes even get a little misty on my way out of the polls, thinking about how great democracy is. And what do I get in reward for this? Apparently I get my name on the list of "likely Democratic voters," and I get harassed. (I don't *always* vote Dem, but I skew in that direction.)

It was only a few more days before we got another call. Steve answered this one and told the woman about my threat. And I yelled from the background that now I'm not voting. The woman then tried to find out from Steve if I was not voting at all, or voting for the other guy. (Does it matter that much?) Steve said he didn't know and got off the phone.

Over the next couple of days, we got at least three more calls (we're up to 10 at this point in the story -- AT LEAST). Each call hardened my resolve to sit out the election. One call woke Lexie up. Steve's profane response to that person should probably not be repeated here. Then Lexie's nanny told us she had to keep the phone next to her all day because of the political calls for me -- when a call came during one of Lexie's naps, the nanny needed to answer the phone as soon as it rang so Lexie wouldn't wake up.

I felt as if I was under siege. I started to consider changing our home phone to an unlisted number. We have it only for emergencies; we mostly use our cell phones. A couple of Steve's family members use the number, but we could easily fill them in about a new one. It occurred to me that it's ridiculous to be considering changing my phone number because of political calls. Has it really come to this?

Then, yesterday, I had an opportunity to go straight to the horse's mouth. Dave Marsden himself came knocking on my door asking me to vote for him on Tuesday. I couldn't believe my luck.

I informed him that I was not voting this time, because we received SO MANY calls that I felt harassed. I told him it was during dinner, during my family time, and he had alienated me. I mentioned that I always vote, but that I'd be sitting this one out. He looked taken aback and then started a spiel about it being an important election for control of the Virginia State Senate, threatened all sorts of scary right-wing things, and blah blah blah. I just looked at him, thanked him for stopping by, and said, "maybe next time your people won't call me QUITE so much."

After he left, I felt kind of righteous, but I also started thinking that maybe an in-person visit from the candidate trumps excessive telephone harassment. Maybe I would vote for him after all, because the other guy is a far-right-winger who used his one prior elected office (school board) to make a public speech in favor of abstinence-only education that featured a personal story about the trauma he endured in losing his virginity before he got married. Seriously. Maybe I could vote for Marsden after all.

And then. Then the phone rang. It couldn't be.

It was.

Just a friendly recorded call from Mark Warner supporting Marsden for Senate.


Thursday, January 7, 2010

Guardian Angel

I want to tell you about Lexie's Guardian Angel. It's a cliche, I know. But hear me out.

October 21, 2007, would have been the due date for pregnancy #1, our first loss. That pregnancy only lasted a couple of weeks, but we didn't know to be scared/wary/worried. We knew only that you shouldn't tell people about a pregnancy until 12 weeks or so, once you were past the risk period. (Now, the thought of this almost makes me laugh.) Nobody knew about it except for me and Steve and a couple of close friends. I spontaneously miscarried, and the doctor termed it a chemical pregnancy. When my brother called us a week after my miscarriage to announce that his wife was pregnant, he didn't know about our loss. To this day, he doesn't know. I didn't know what to say. We hadn't announced the pregnancy, and somehow it didn't seem appropriate to say, "Hey, congratulations! We were expecting too, but then I started bleeding like crazy! Our baby would have been born two weeks before yours! Isn't that a funny coincidence? Ha ha!"

January 5th, 2008, would have been the due date for pregnancy #2, our second loss. With this one, we saw a heartbeat at 7 weeks, and the doctor smiled and said "it looks viable." But the egg had implanted way too low, and although that doesn't *always* mean things will go badly, it did for us. At the next appointment there was no heartbeat. I waited to miscarry on my own, but nothing happened. A classic "missed abortion." I had a D&C a couple of long weeks later.

I still think about the babies that weren't, especially around their due dates. My doctor said we'd just had bad luck. At the time, we didn't know about my uterine anomaly. I believed that our first miscarriage was probably just a bad egg, but the circumstances surrounding our second miscarriage were not normal, and we wanted answers. We fired that doctor and went to a specialist. After a barrage of testing, the specialist diagnosed a unicornuate uterus. He noted that most women with this condition have normal pregnancies, but a higher percentage than normal experience preterm labor.

I did my own research and became highly educated on the subject. It seemed to me that implantation in a good spot was key to making it through the first trimester; there is some evidence that the shape of a unicornuate uterus creates far fewer healthy places for implantation in the uterine wall. We'd have no control over where an egg implanted. I didn't know how many more pregnancies it would take, but we would keep trying. More importantly, though, we now knew to be hypervigilant for complications when we finally made it past the first trimester. That's where the new information would make a difference.

If we hadn't had the second miscarriage and started investigating, my pregnancy with Lexie could have had a terrible ending. I wouldn't have already signed on with a perinatology (high-risk pregnancy) practice for all my OB care. We wouldn't have known to call immediately when I started having symptoms of preterm labor. A regular OB probably would have told me to lie down and take it easy for the weekend. Instead, my perinatologist had me report immediately to the hospital, where I stayed for 9 weeks. I was 22 weeks pregnant at the time. Without prior knowledge of my condition, we would likely have lost Lexie in devastating fashion.

We couldn't save the baby who would have been due in January 2008, the baby who had no chance because of my unicornuate uterus.

But by helping to lead us to the answers we needed, that baby saved Lexie.