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.

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.

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.

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.

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.

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.

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.