Toothy

We were pretty sure both babies were teething again. The drooling, Veronica’s little fever, Colin chewing on everything (and every body) that came close to him … well we picked up on the hints. 

And today Colin proved us right. He was laughing and “talking” to John (which means he was yelling AAAAYYY at the top of his lungs) when John spotted it — the fifth tooth. 

Now we’re just going to keep our fingers crossed that Veronica gets her fifth pretty quickly. I’m getting tired of being nibbled on.

Pulmonologist update

I took Colin to meet his newest specialist today — we’ve added a pulmonologist to our collection now. I had to drive out to the suburbs, because I wouldn’t have been able to get an appointment here in the city until the end of October.

So, just after rush-hour traffic cleared (I hoped), Colin and I headed out of town to his appointment. The drive wasn’t bad at all, despite hitting a couple of small construction projects, and we actually arrived on time. (Yeah Mommy!) We also found the office with no trouble, and didn’t have to wait at all.

The doctor was very thorough, and we discussed Colin’s health history, current habits and so on in great detail. Honestly, this is the longest I’ve spent with a doctor (outside of the NICU) in years. He listened to Colin’s lungs for a while, and this is what he told me:

Originally, he wasn’t planning to put Colin on any medication, based on how good he looked and his history. But while he listened to Colin’s lungs, Colin started squirming around and getting a little unhappy about holding still. At that point, the wheeze Colin’s pediatrician was concerned about became apparent.

Why did Colin’s lungs sound wheezier all of a sudden? The damage caused by the ventilator is at the very ends of Colin’s lung passages — in the littlest bronchioli. When Colin breathes normally, he isn’t using that part of his lungs as much. But when he gets upset or excited, his chest is compressing more, squeezing air through those little bronchioli. The damage has made them “floppy,” and the air passing through them makes a whistle.

So Colin will be starting on an inhaled steroid (normally used to treat asthma) tonight. He’ll get that twice a day. We also are getting an inhaler with a different medication than he’s on currently to use if he’s struggling to breathe. The hope is, the steroids will make it easier for Colin to breathe when he gets his next cold (because he will get one), so he won’t end up with bronchiolitis again. 

Other exciting news: 

Colin has gained 11 ounces since July 5th. He’s up to 16 pounds 11 ounces.

After plotting Colin’s height/weight data from his visits to the hospital, the doctor believes he’ll actually be on the growth chart (for his actual age) by the time he’s 18 months. That’s good, because it gives him more space for lung growth while his lung tissue is still actively growing.

The doctor fully expects, based on Colin’s history, that he should successfully outgrow his lung problems at some point. Most kids do, but there always is a chance that they won’t. So it was reassuring to hear the specialist say he thought everything was going well.

Yeah Colin!

8 1/2

No, I’m not branching out into film discussions here — I don’t have time to watch anything so the discussion would be short and boring. (Have you seen Over the Hedge? Yes, at least 62 times. My favorite part is … )

Actually, that’s Colin’s latest achievement: He made it 8 1/2 minutes sitting unsupported yesterday afternoon. Ironically, this comes just one day after I told John I was beginning to despair that Colin would never sit on his own. Apparently he heard me.

Unfortunately, Colin’s development in physical things doesn’t follow a normal course of steady improvement. He seems to toy with the idea of acquiring a new skill, flirt with it for a while (a long while some times), then make up his mind that it’s worth the effort and do it. So yesterday’s monster sitting session has been followed by an inability/unwillingness to sit for any length of time at all.

But he did manage one major accomplishment: he restored my hope.

It’s hard with Colin (and I suspect with all preemies, although I feel it less with Veronica). Intellectually, I know it’s harder for him to learn things, and that he is making progress according to his own route and on his own schedule. I acknowledge with the rational part of my brain that he is doing so much better than we feared. Really and truly, he is such a happy, fun baby that even if he never is able to walk (or even sit on his own) that he will find joy in life and be happy (and I will be too). 

But the emotional part of my still sometimes wins the battle and I worry that the babies (Colin in particular) are behind. And I worry that they may not be able to catch up, or do everything that other kids do. (But really, self, no kid does everything other kids do.) Fortunately, this part of my brain doesn’t get the upper hand too often. And when it does, something happens to remind me that I really am blessed.

Sleep training … fail

Right after the babies’ one-year checkup, we decided it was time to get serious about encouraging [forcing] the babies to sleep through the night. In other words, we embarked on a program of “sleep training.” The doctor said there was no reason, developmentally or growth related, why they should still need to eat at night, so we set a goal of going at least six hours between feeds at night. 

Well, I’m happy to report that we’ve had stunning … failure. All right, to be fair, it hasn’t been a total failure. Both babies, and Colin in particular, are eating much less over night. But that hasn’t translated into them actually sleeping better or longer. They still continue to wake up repeatedly throughout the night, and more often than not, are unable to put themselves back down.

After 17 days of listening to Veronica scream for anywhere from an hour to three and a half hours (our record) in the middle of the night, I have thrown in the towel. I have tried everything from ignoring her, to picking her up to calm her before laying her back down (over and over) to rocking her to patting her … if someone has suggested it as a way to help a baby sleep, I’ve given it a shot. 

So I’m back to where we were before, nursing her back to sleep if she doesn’t go down on her own quickly. So while she may still be waking up frequently (every hour and a half last night — not one of our better nights), at least she is asleep again within 10 minutes or so (and then I can get back to sleep too).

Maybe by the time they’re three they’ll be sleeping … probably not, but I’m holding on to that hope.

And now we are 1

Well, we survived the first year, and the first birthday party. As expected, Colin was totally uninterested in the cake, but Veronica was more than willing to eat/throw his as well. 

We discovered that Colin and swimming are like oil and water — they don’t mix. But Veronica is a water baby and would have stayed in the pool all day if we had let her. She even outlasted Ethan, and kept trying to put her face in as she was kicking and paddling while Mommy held her.

We also discovered that the babies don’t sleep well at Grandma and Grandpa’s house either. And that napping on the road isn’t a reliable way to catch up on sleep.

Colin is now regularly getting up onto all fours, with his knees squarely underneath him. He still is not sitting on his own, although he will do it for 5-10 seconds at a time — especially if he’s distracted and doesn’t realize he’s sitting. 

Veronica has started walking if you’re holding her hands. She was doing it a little, but when we were in the pool, she was walking like crazy in the water and just never stopped when we got out. 

We came back from Wisconsin this morning to make it to Colin and Veronica’s one-year appointment with the pediatrician. Colin has officially caught up to Veronica in height (length at this point, I guess). He is 28 inches long, she edges him out with 28 1/4 inches. She has him in weight though. At 19 pounds 5 ounces, she’s still way above his 15 pounds 7 ounces. 

Colin is about to add another specialist to his roster of doctors. His lungs have not cleared completely, and his pediatrician now wants him to start seeing a pulmonologist. So I’ll be contacting Children’s Memorial Hospital again shortly because she wants him in this month. 

Other than the lungs, which we knew would give Colin problems at least throughout these early years, both babies are healthy and happy. Yeah!

Thank you to everyone who has been rooting for our little guys through everything they’ve been through this year. We couldn’t have done it without you.

Happy birthday babies

One year ago today, after a very long month of waiting, but three months too soon, Colin and Veronica entered this world kicking and screaming. It has been a wild ride filled with much worry and great joy. It has been filled with what feels like 2,000 doctor appointments, 2 surgeries, dozens of milestones — some reached earlier than expected, some later.

We have been blessed by the support of family, friends and neighbors. We have met countless people who did not know us (or did not know us well), but who never the less cared about and cared for our babies. 

Colin at 6 weeks.

Colin at 12 months.

Colin has progressed from a tiny baby weighing the same as 6 sticks of butter and who couldn't breathe on his own to an active little crawler who weighs 16 pounds now.

Roni at 6 weeks.

Veronica at 12 months.

Veronica has grown from a 3 pound 6 ounce baby into an active 20 pound baby girl who is working on figuring out this whole walking thing and who is mostly caught up with other babies her age. 

So today we celebrate a milestone we weren’t even sure we would ever see 12 months ago. And while I’m hoping for a less-eventful second year, I feel blessed (and really tired) by our little miracles.

Reminders and new approaches

It seems like every time I stop adjusting the babies’ age to account for their early birth and start thinking of them as just plain old babies (rather than as preemies), something happens to remind me that they aren’t. 

Today, Colin and Veronica’s occupational therapist (Deb) did their assessment for Early Intervention. She and I had talked some about this when Veronica had her follow-up at the NICU last month (Deb was the therapist at the clinic at that point — they rotate through), and I knew that in fine motor skills, Veronica is ahead. I also knew, from watching him, that Colin has very good fine motor skills as well.

Deb’s official assessment (according to John, who was here for it) agreed with that — Veronica’s fine motor skills are between 13 and 15 months and Colin’s are between 13 and 14 months. But Deb did say a couple of things that kind of threw me (although they didn’t surprise me).

Veronica is behind in measures of movement — standing, cruising, being willing to take steps; she’s where she should be for her adjusted age. So there we go again — adjusted age. I had finally stopped thinking of Veronica in terms of dual ages. She was just my almost year-old baby. And now I’m adjusting her age again.

Okay, so to be perfectly honest with myself, I already knew she was behind her actual age in these things. And I’m not worried about it — she is starting to stand up and is beginning to show a willingness to take steps while we’re holding her. It was just hard to be jerked back to the whole “preemie with an adjusted age and an actual age” way of thinking. 

Colin, too, is behind on his movement. No surprise there, since he’s still not sitting on his own (which is more like a six month skill). John and I were hoping he would sit by his first birthday, but that clearly isn’t going to happen (we’ve only got five days) and we’re okay with that. We’ll just have to wait a little longer.

When Deb was asking John if we had any concerns, he explained that we’re not really worried about Colin because he continues to make progress, albeit slowly, and he seems like he isn’t completely skipping any milestones. He’s just getting there on his own pace. She agreed, and then told John (reassuringly) that there is a saying that if they’re sitting by 2, they will walk.

And that was another painful reminder — of the risks Colin still faces as a result of the circumstances of his birth. We have known from the start that Colin faces a huge risk for cerebral palsy and developmental delays and problems. And that he might never walk. His list of risk factors is daunting (very premature birth, extreme low birth weight, bronchio-pulmonary displasia from the ventilator, steroids to get him off the ventilator, long time on oxygen). The fact that he shows so few problems is something we celebrate every day.

But somehow I have never really thought about the fact that he might not ever walk in concrete terms. Until today. Being told that he likely won’t face that hurdle brought home the fact that he does. (My twisted mind, right?) And it made me a little sad. 

But then Colin smiled at me and Veronica crawled over and gave me a hug, and all seemed good again. 

For 15 minutes. Then, while I was cooking dinner, both babies fell apart and started fussing nonstop. Which brings us to our new approach — to bedtime.

Neither Colin nor Veronica are good sleepers. They both still wake up (multiple times) at night wanting/needing to eat. They aren’t good at putting themselves back down, and they take micro naps. We’ve tried a variety of approaches (Veronica will cry for at least 2.5 hours if you try to let her cry it out), but nothing works really well. 

So tonight, spontaneously, John and I decided we would start putting the twins down before we eat dinner — starting now. It didn’t go very smoothly. Lack of planning will do that to you. But it was nice to be able to go out with Ethan after dinner for a bike ride, because the babies were already in bed. 

I hope (more than you can imagine) that after a few days, Colin and Veronica will adjust to this new schedule and will start sleeping better. We all need that.