One Year Later

In many ways, I feel like we're in a new chapter of our story, one that is so normal that it's hard to know what to write about. I never wanted to be a "mommy blogger" -- what's incredible or beautiful or hilarious to me is likely those things to me only because Lexie is my daughter. I don't think they'd necessarily be interesting to anyone else. As Lexie gets older, I'm also starting to feel like it's inappropriate for me to post pictures of her on an open forum. When she was my little baby, that was fine, but now she's getting to be her own person. However, after receiving a few messages asking me to check in, I thought an update might be in order.

My last post spent a lot of time discussing Lexie's feeding delays. The feeding therapies we've engaged in over the last year have made a huge difference. We did not end up doing any of the intensive weeks-long programs -- instead, we combined occupational therapy (for sensory issues) with feeding-specific therapy, first individual and then in a group with other kids. Lexie is on track to graduate from her last therapy - feeding group - at the end of March. She's still not a huge fan of fruits and veggies, and continues to have weak jaw strength so she can't deal with anything very chewy (like a lot of non-ground meat). But at this point she eats more foods than a lot of three-year-old kids, and we can often get her to try new things - at least a lick. We can take her to restaurants and be at least somewhat sure that she'll behave and eat some of her kids' meal. Her favorite food is macaroni and cheese. I'm still amazed that she has a favorite food - a year ago she wouldn't eat any food at all. No hyperbole - she literally could not bite, chew, and swallow solid food.

It's hard to explain the euphoria we feel when Lexie sits down at the table and eats meat lasagna, eats a bowl of Cheerios in milk, or agrees to take a bite of a green bean (we've learned it's ok if she then spits it out onto her plate - the bite itself is a step in the right direction). We were under seige for a long time with her eating challenges, and through the course of this past year, the weight has slowly lifted. It was a long, slow process, but we're almost there. It is a huge relief.

In most other ways, Lexie is a normal little 3-year-old girl. She loves books, drawing, painting, singing, dancing, and watching classic movies with her dad. I realize it's probably inappropriate for her to watch, say, Gone With the Wind, but it's good bonding time for them and they both love it. Any movie with a great soundtrack has her rapt attention. She doesn't really understand what's going on. When they watched Lawrence of Arabia, she kept asking about all the ghosties (her interpretation of the men in their white dishdashas). I make Steve fast forward when there are fight scenes and such.

There is one last area in which Lexie is lagging her peers - potty training. Preemies are known for being behind the curve here, but I'm starting to worry a bit about it. She's the only one in her class who has never peed on the potty at school (or at home for that matter). If she doesn't get trained by May, she'll be held back in her class at school. I wouldn't worry about this, but Lexie LOVES her teacher, and she's a smart, observant little girl, and I do NOT want her putting it all together that as long as she refuses to pee on the potty, she gets to stay with Miss Roxana. If that happens, Lexie will be in diapers until she's 5. She does show all the regular signs of being ready to go on the potty - she just refuses to actually sit there. We need to get over the hump. So I'm planning a little 3-day stay-home potty training boot camp in April for her and me. Wish us luck!

As for me, I feel like my little family finally has hit its groove. The daily panic and near-despair from the eating problems have faded away, and my work absences are down to a minimum as the various therapies wrap up. I'm starting to think about unsubscribing to the preemie mailing lists and message boards, because the discussions there now seems so foreign to me. I think my family is ready for a new adventure. No, not another baby - I have not forgotten 9 weeks of hospital bedrest and 6 weeks of the NICU. But a move south - way south - may be in our future.

If it is, I think we'll have a new story to tell.

For now, I leave you with this - Lexie at Christmastime on the steps of an old farmhouse... eating Nutter Butters.

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.

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.

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.

Uncertainty

At a department store recently, I thought about buying some sale clothes for next summer for Lexie. I found myself hesitating, in the same way I hesitated when I didn't want to buy maternity clothes too early, and when I didn't want to buy baby clothes until she actually arrived.

And I realized: I still am not 100% certain that she's here to stay. She's been in fairly good health, and gaining weight in spite of GI problems. There's no reason to think she's not going to make it at this point. But I still fear SIDS, and now swine flu lurks just over the horizon. I'm sure I'm not alone in my concern for my child, even among parents of full-term babies, but I do think preemie parents have stared a lot of serious, life-threatening hazards in the face, and it heightens our awareness of all that could happen.

I'm not sure when I'll feel secure that Lexie's going to be okay.

The first time I was pregnant, I purchased a onesie for the baby that never was. It was a silly little thing I'd seen years earlier and I was excited to buy it for our baby. After that first miscarriage, I tossed the onesie in the back of a closet, where it stayed for more than two years. Every once in a while I'd come across it, but I'd return it to the depths of the closet and try not to think about it. I hated having that reminder of how certain and happy we had been, and how little we knew about how long the journey to parenthood would be.

A few weeks ago I finally broke out that onesie and tried it on little Lexie. It was already kind of small, but I did get one picture.



She had just the right Jennifer Grey look here, too.

"Fragile" Baby

Thursday night, I went solo to the baptism class offered by our Catholic church. We aren't sure when we'll get Lexie baptized, because church was one of two places doctors told us never to bring her, because of the multitude of germs swarming about. (Grocery stores are the other off-limits category.) We were hoping to get the baptism done this summer, if it fits in the church's schedule. But we weren't sure -- we are still thinking of waiting until next summer, by which time her immune system should be caught up with those of her peers.

During the class, the instructor mentioned something about "a private baptism," which would be for sick babies or baptisms that expect a very large crowd. After the class, I approached the instructor and mentioned Lexie's prematurity and weak immune system, asking if this was an appropriate reason to schedule a private baptism.

"Oh," she replied. "You have a fragile baby?"

For a split second, my mouth hung open. I was at a loss for a response. What the heck does that mean, a "fragile baby"? I sure didn't want to answer in the affirmative.

So I burst out laughing, tears collecting in the corners of my eyes.

And the awkwardness descended upon us like a cloud.

Then I explained that I didn't like to think of my daughter as fragile, although she does need a little extra help and protection. I think the woman was a little chagrined at the exchange. She did say that we could probably arrange a private ceremony, although scheduling could be a challenge.

But I keep thinking about the term fragile. She was definitely fragile when we brought her home. I was terrified that she'd just stop breathing, or that I'd drop her and mortally wound her tiny body.


But now she seems pretty hardy.


Fragile? I don't know. What do you think? Is there a better term out there?

Hello From the Nursery...

I'll be spending large chunks of time this week in Lexie's room as she gets accustomed to her crib. She's starting to fill a lot of her little bassinet (at least lengthwise), and, much as I like the security of having her right by me at night, I know it's getting to be time to move her into her own digs.

For now, we're just working on naps. The first one this morning had a rocky start. I put her down, all swaddled and sleepy, and she suddenly decided it was time to party. She turned on her 1,000 watt smile (see below) and started cooing like a champ. But I know that game. That's the game that ends with no real naps all day and a pissed-off baby by 7pm. We don't like that game. So I popped in the paci, and turned on some white noise, and we started playing the game where she spits out the paci and whimpers, seemingly just to see if I'm still here and waiting to pop the paci back in. After about 20 minutes, she actually dropped off. Now it's afternoon-nap time. She's not so good at afternoon naps regardless of sleep location, so we'll see how it goes. Right now we're playing the "drop the paci" game again.


Good times, good times.

I'm sitting in the room with her not just because I want to play her little games, but also because I worry about her. Her bassinet still has a special motion-detector monitor hooked up to it. It was this monitor that finally allowed me to sleep at night (instead of staring at her all night long to ensure she was still breathing). The first couple of weeks home from the hospital were really scary, and her breathing was noticeably uneven. When we left the hospital, we left without a hospital monitor. In spite of my repeated questions and requests, they sent us away completely unplugged, saying that Lexie's breathing was so great it would just be a waste.

When we got home, I was a nervous wreck. I credit this product with preserving my sanity: AngelCare Movement Sensor With Sound Monitor (see photo below). With this monitor, I could be sure that if Lexie did stop breathing for 15 seconds or more, I (or Steve) would be immediately alerted to the event and could take action right away.

The 15-second warning beep has gone off twice, waking me up in the middle of the night. I just had to lightly shake Lexie and she started breathing again. She probably would have been fine anyway, but who knows? Her breathing is much better now, but you can't be too careful.

Although Lexie is now over 5 months old, she's closer to 3 months gestationally. Babies between 2 and 4 months of age are at the highest risk for SIDS, and by some statistics preemies have 80 times the risk of full-term babies (although the exact stat depends on the study). So I'm not taking any chances. Once we're ready to put her in the crib to sleep at night, the motion sensor will move to the crib. In the meantime, I monitor her the old-fashioned way during the day.

I'm dreading putting her in her crib at night. I think I'm going to find myself going to her room at every whimper, at least for the first week or so. Even though it's not a long walk, it takes a lot more energy to go down the hall than it takes to pop myself up on an elbow, look down into her bassinet (pushed next to the bed each night), and assess the situation.

We need to start working on this now because I'm going back to work July 13. Lexie's nanny is scheduled to start July 6. I say "is scheduled to start" rather than "is starting" because I noticed (when I went to hide our nanny-seeking profile on the site where we found her) that her job-seeking-nanny profile is still active. I'm hoping she's just looking for interim work, versus looking for a better offer. Even if she does find something else, though, the job market for nannies is so bad that we shouldn't have *too* much trouble finding someone else.

At least, that's what we're hoping. Fingers crossed...

At Her Own Pace

Soon after I found out I was pregnant, I heard through the grapevine that a colleague was pregnant as well. Her due date was just a week after mine. She had a very easy pregnancy, and her baby was born at full term, which would have been a week after Lexie's due date had all gone well. Instead, Lexie was almost 11 weeks old.

Preemies mature at kind of a staggered rate. You can't simply say, "well, it's two months after her due date so she should be on track with those milestones." In some areas, she's a little bit ahead of her gestational age (her age calculated from her due date instead of her actual birthday), but in others, she's behind. I do understand that all babies mature at a different rate, but we have to be more vigilant for any sort of delays. (Luckily, Lexie is eligible for all sorts of help if she falls behind substantially - starting at 4 months [gestational] she will be monitored by specialists and will be referred for more help if she needs it, up to age 4.)

For the most part, I really am ok with relaxing as Lexie develops at her own pace. I know that the important thing is that she is here and healthy. But this weekend, that colleague posted a Facebook update about her baby "having a conversation with herself," and that made me kind of sad. Lexie makes cooing noises, but nothing as sustained as that, and if she's not interacting with a grown-up she's just as likely to be quiet. Or to be whimpering for some attention.

Of course I immediately went online and found "Eight Ways to Improve Your Baby's Verbal Skills," briefed Steve on the techniques, and we spent the rest of the weekend narrating our every move to her. "Now it's time to change your diaper! Here is the new diaper. See, I'm putting it under your old diaper..."

We know it's a little ridiculous. We really aren't trying to create some type-A overacheiver. We just want her to have every chance possible to catch up to her peers before any delay starts to become noticeable in preschool and kindergarten. We will do everything we can.

In physical size, she continues to make great strides. Her length was on the chart for her true age at her 4-month doctor's appointment a couple of weeks ago - she was in the 16th percentile. She still was underweight though - even for her gestational age she was still pretty light, probably due to a litany of digestive issues we've been working out. But we can see so many major changes when we think back to how she looked in January.

When she was born, she was 10 weeks early, weighed 3 pounds 11 oz., and was 16 5/8 inches long. During delivery, she had been severely bruised all over the right side of her head, her upper torso and right arm. Where she wasn't bruised, you could see that she was yellow and jaundiced. She had a thin layer of downy hair all over her back and shoulders (it's called the lanugo). She was so skinny - there was no baby fat on her at all, because that's what the third trimester is for. Her eyelashes were invisible unless you could get within a few inches to see tiny colorless feathery lashes, more of a suggestion than anything else. Her cheeks were almost gaunt. Her fingers looked so long and delicate, without any baby chubb to fill them out. Her fingernails were the size of sesame seeds. She didn't really have any nipples yet - they develop between 32 and 34 weeks in utero. Her little bottom was almost flat. Her legs were so scrawny that it looked like she was wearing another baby's too-big leg skin. Without any fat on her belly or around her legs, her girl parts stood out like a Mr. Potato Head piece.

(I fully realize that someday she may kill me for writing those last few details.)

At her 4-month appointment, she weighed 10 pounds and was 23 1/4 inches long. Although she's still a little peanut, all her parts are looking pretty normal. Her right eyelid still has red streaks on it from the birth injury, but it's operating the way it's supposed to be. Her eyelashes are now long and dark. My favorite thing is her little almost-chubby bum. Everytime I change her diaper I want to give it a little pat.

It's funny the things you appreciate.