Getting fitted

Colin got fitted for his orthotics today. Unfortunately, the way the babies’ schedules work out right now, there is not a good time to schedule these appointments. We’re either running into nap time, having to cut someone’s nap short, or hitting lunch time. 

This morning, we were running into nap time, so someone (besides me) was a little crabby. Other than that, however, the process went well, and we were back in time to still get Colin down for a morning nap — which he really needed since I’m pretty sure he had been up more or less since 4:30 this morning.

We go in to pick up the orthotics (in jungle print with green straps) a week from Tuesday. They are relatively short — coming up just over the ankles — and are designed to help keep his feet from turning out or in, and his ankles upright. I imagine it will take a few days for Colin to get used to the feel of them (and the new shoes he’ll need to fit over them). Then we’ll be really pushing the walking practice, because I want to get this boy up and moving around (even more).

Babies first [interactive] Christmas

This is the babies first Christmas — well, at least it’s the first Christmas where they’ve been able to participate in the fun. Last year they were still teeny tiny little things and had no idea what was going on. We had a lot of debate about how to handle opening presents; because they still nap in the afternoon and go to bed early, Christmas Eve posed a problem (church was at 4:30, so that split our awake window down the middle). 

Fortunately (or not), both babies took monster naps yesterday morning, and decided not to sleep in the afternoon. This allowed us to open a couple of presents with them before church. We wanted to have them open the presents from Ethan first — he sewed pillows for both of them (pretty much all by himself) out of their favorite elephant fabric and we didn’t want the pillows (and their reactions) to get lost in the excitement.

Ethan was too excited about it, and pretty much ended up opening the gifts for them. But Veronica caught on to the concept of pulling the tissue paper out of the bag pretty quickly — and that’s where we lost her. Like most kids her age, the tissue paper and gift bags were WAY more exciting than anything else. Colin, however, took one look at the pillows and dove face first on to one, snuggling it and wiggling with glee. 

Roni got into the tissue paper.

Colin loved the pillow.

The other gift we let them open last night was a pop up “house” and crawling tunnel I bought for them earlier in the year from Ikea. Again, Veronica enjoyed the wrapping paper, but Colin took one look at the house, and crawled right in. Then, when I got the tunnel out of the package and expanded … well, let’s just say Colin was in little boy heaven. 

He eventually crawled out long enough to grab one of the pillows Ethan made and drag it into the house with him. Then he (and Ethan) crawled in and out of that tunnel for another 15 minutes. They would have kept going, too, if we hadn’t needed to leave for church.

Veronica was a little afraid of it whole thing at first. I’m sure Ethan thrashing around in there didn’t make it seem any safer. But at the end of our 15 minutes of fun, she finally ventured inside and discovered the joy of crawling through. And after church, even though both babies were so tired they probably could have fallen over and slept, the minute they saw the tunnel at the top of the stairs, they perked up and started to play again. 

Good purchase, Mom.

By this morning, when they opened their stockings and the rest of their presents, they had this whole gift-giving/opening thing figured out.

Music to my ears

Colin had his annual Early Intervention (EI) meeting yesterday, where all of his therapists — including those we don’t see — come over and discuss his progress and his needs. We have to do this once a year, as long as he receives services, to ensure his eligibility. 

I know from hearing other parents’ stories on some of the preemie support boards, that the EI system in Illinois is not the norm. It is far, far above the norm. And we are even more fortunate, I am sure, to be living in the city where there are many therapists in practice. For us, EI has been such a blessing. Colin has made so much progress in the past year plus, thanks to the therapy he gets. And having the therapy take place at our house makes it possible for us to continue. Because, honestly, I don’t think we could have managed twice-weekly sessions if we had to go somewhere for them.

Before this annual meeting, Colin is assessed by speech, developmental, physical and occupational therapists (and a nutritionist, this year, per our request). Then everyone comes over and discusses their findings and we decide what services Colin needs for the coming year and set goals for his development. There really aren’t any surprises at these meetings; the therapists all tell me after their assessment what they’re going to recommend. But it is interesting to hear from everyone together about how Colin is doing. 

(Because Veronica has “graduated” from therapy and is pretty much caught up with her actual age in all areas, she doesn’t need/qualify for EI services any more.)

I may be a bit biased, but I love any report about my child that starts off with the sentence, “Colin is a charming and handsome child …” All of the therapists agreed that Colin is on target or advanced in his social skills (which can be a real concern with preemies, especially those who had as many problems as Colin at the start). 

The developmental therapist was very encouraging — she only saw very minor delays from his actual age, all related to his delays in gross motor skills. She said she is quite certain that by 24 months, he’ll be functioning (developmentally) completely at his actual age. 

(They stop adjusting preemies’ ages at 24 months, but that doesn’t necessarily mean they’re caught up. In fact, many still lag behind their peers for years. It’s just less noticeable because you’re looking at a full years’ span of ages when you’re talking about 2-year-olds, versus the 1-month span when you’re talking about 18-month-olds.)

Colin has “graduated” to only once a month occupational therapy. He has mainly caught up in his fine motor skills, except (again) in those areas related to his gross motor skill delays. (It’s all connected, much more than I would have expected.)

He will continue with weekly physical therapy, where he continues to show a three to four month delay in skills. But everyone (including John and I) are impressed with his progress. We know now for certain that it’s a matter of when, not if, for walking. (And he’s already climbing like a monkey, so no issues there.)

He is also about three months behind in speech, but we’re going to wait three months and do another assessment rather than start on therapy now. I feel, and everyone agreed, that as soon as he starts walking, the speech is going to catch up. He is making progress already on his own, and I’d rather let him focus on catching up on his gross motor skills. (I would feel very different if he weren’t saying anything, or adding new words and signs now.)

He also will get a monthly visit from a nutritionist to help assess his diet and provide suggestions to get him gaining weight. (Her report said that his diet is basically on target, but he needs an additional 50 to 100 calories a day to start gaining — an easy task to get in my diet, but much harder than it sounds in his.)

We have been so lucky with both babies. They have overcome so much, and really seem to have beaten the odds. Colin’s problems, while frustrating, are relatively minor (yes, even his lung disease is relatively minor compared to what he could be dealing with) and quite likely things he’ll outgrow. Veronica has caught up so quickly, and continues to thrive. And that, my friends, is the best Christmas present I think I will ever get.

Hearing: Checked

Colin had his [rescheduled] hearing test this morning. And this time we were prepared: John put the new referral in his wallet right away when he picked it up. 

Unfortunately, they only seem to schedule specialist appointments during nap times. We can only get in to see the pulmonologist during afternoon nap time. The audiology department only had appointments available during morning nap time. But at least this one started before nap, so Colin was still in a good mood. 

Apparently having an audiology appointment is like having a big party for Colin. They had fun toys, and it was a new place to explore, and the testing was kind of like games. John said he even did good with the parts where they had to look/put things into his ears.

The upshot of it all is, he passed — there is nothing going on that should be affecting his speech or hearing now. He did fail two tests, one on each ear. But those results were somewhat cancelled out by the other tests he passed on each ear. (It’s hard to do testing on such tiny little ears, so you have to expect you’ll get some conflicting results from time to time.) 

Colin does have some things in his ears that aren’t formed right, however. And that could, potentially, lead to problems down the road. Or not. They don’t know. So we will have to take him back again in six months for another test, just to make sure he hasn’t suffered from any hearing regression. But for now, he’s just fine. 

 

 

My little cutie boy, ready to roll.

[I] Let them eat cake

I have not done as well this time around at keeping the babies away from unhealthy foods. With Ethan, I was pretty strict (except for ice cream) until he turned 2. I don’t know whether it’s because they’re the “second” child[ren], because there are two of them, because I’m now too old and tired to care, or because we’re trying so hard to get Colin to gain weight. But basically, they’re getting more junk than Ethan did. (That’s not to say that they are eating an unhealthy diet — overall, they still eat very well.)

Ethan and I made cake pops today, finishing our first round before dinner. So, of course, we had to try them to make sure they’re gift-worthy. (If you get cake pops from Ethan for Christmas, please pretend you didn’t read this post.) And, of course, Colin and Veronica are old enough now to recognize a treat when they see one. And they wanted in on the action. 

Because I’m an old softie, I let them split a pop — which made them very happy (and messy) babies. To be honest, it’s fun to watch them enjoy treats like that — which is probably the real reason I let them have the goodies. 

Now I’ll just have to hope the sugar doesn’t affect their sleep too much. 

New shoose

Veronica is talking up a storm now, in her own baby way. And Colin can say several words quite clearly — if he feels like it. Veronica’s three favorite words, out of her dozens, are uh-oh, shoes and cheese. She often walks around the house saying “Shoose. Shoose.” as she searches for whichever pair she wants us to put on her. And she almost always wants to have a pair of “shoose” on. 

Both babies love playing with shoes. We keep theirs (current and too small) in a bamboo box by the front door. They can easily spend half an hour or more out there pulling the shoes (and hats and mittens) out of the box, trying to put them on, moving them around the room. To Colin, I think they’re just like blocks or any other toy: they’re fun to play with and easy for him to carry around.

Veronica, on the other hand, loves shoes because they’re shoes. She will pick out her own shoes (or fetch Colin’s for us if we ask), always getting a matched pair, based on what she wants to wear. (You should have seen her the one day we took her to Famous Footwear to get boots — baby girl was in heaven.)

On Friday, one of my co-workers brought in a present for Veronica — two new pairs of shoes. So after work, I gave her the box to open. (We’re not discriminating against Colin here, but the order for his orthotics should be arriving any day now, and we don’t want to get him new shoes until he can try them on with the orthotics.) 

Veronica very carefully opened the box (a little taste of Christmas coming), tore into the tissue paper, and happily exclaimed “Shoose!” Both she and Colin wanted to try them on right away (leading Ethan to proclaim that Colin looked silly in the shoes with the pretty flower bows), and spent the rest of the evening trading off who was wearing which pair. (Veronica seemed to prefer the purple shoes with the bows; Colin liked the green ones with the flowers.) It was very cute.

Back on track??

I haven’t posted in such a long time, mostly because I just haven’t had the energy to do anything. We were sick here (in some combination of family members) for about six weeks, and that really has taken a toll on my energy (especially since I was sick for three of those weeks myself). We finally all seem to be more or less back on track, health-wise at the moment, though. Thank goodness.

We’ve had many things going on recently. Veronica is starting to work on talking, and is trying out new words regularly. But she’s not a baby who likes to perform on demand, so if she says a new word for one of us, it’s nearly impossible to get her to repeat it for anyone else. I suspect it’s going to be like her walking — she’ll work on it privately until she feels like she has it mastered, and then she’ll be off.

Colin is teething (I suspect Roni is too, but  not as obviously). Poor little guy has, to my best estimate, six teeth all coming in at once. He had one break through (one of the canine/pointy top teeth) while we were on vacation, and now it feels like the other top one and all four molars are working their way through. 

So he has become a major chewing machine. After he chewed through three or four board books, John was forced to take all the books away before they all were destroyed (Colin also likes to bend the pages in half). He since then has chewed through several teething toys and has started gnawing on the tables and his high chair. Our front window sill is lined with little teeth marks.

His physical therapist was over when he chewed through the teething toy, and recommended these sticks to us. They’re designed to help people who have had a stroke learn to chew again, but she said they’re pretty indestructible — so we’ll be ordering some for our little guy. It’s either that or a doggie chew, which I thought would work. But John shot down that idea. I guess he doesn’t like the thought of Colin crawling around with a bone in his mouth. (I thought it would be kind of funny — I guess that says something about my warped sense of humor.)

So my fingers are crossed that we’re through the illnesses for now — we didn’t have to take Colin to the hospital at all, but there was one night I was seriously considering it. Having a sick baby is exhausting; having a sick baby with lung problems is even more so.

Sleep, breathing and other essentials

Colin is still sick (or is sick again, I’m no longer sure at this point which it is), and Sunday night took a nasty turn. He was working so hard to breathe, and was crying all night long (16 hours, to be exact). Poor little puppy would only sleep if I was holding him in the rocking chair, and if I had to shift, he would wake up and cry. I seriously debated about taking him to the ER a couple of times, but then he would fall asleep and I didn’t want to wake him.

So, of course, when Monday morning arrives and the doctor’s office opens, he bounced back like there was nothing wrong. (The nap with daddy for an hour may have helped too.) We watched him very closely all day yesterday, and he stayed much better, so we didn’t go in to the doctor. 

Last night was soooo much better. I did have to give him a breathing treatment at 10:30, but before and after that, he was sleeping like the proverbial baby (not like a real baby) with gentle breathing. It was music to my ears (I seriously sat in the bed and just listened to him breathe for half an hour I was so happy.) He’s still pretty congested (as am I), but otherwise seems to be doing well.

Which leads me to a theory on why he suddenly had such a rough night: On Sunday, for whatever reason, Colin choked on pretty much everything he ate — even things he normally can handle well. So now I’m wondering whether he actually aspirated some food, which was causing all the discomfort and breathing problems. Yesterday, we served him pretty much just purees and things that dissolve in his mouth (or teeny tiny bites of other food), and he only choked once. Last night he slept well. (See how I arrived at my theory?)

So I’m doubly glad that we have a speech therapy assessment coming up for him. I talked to the therapist who will be coming out yesterday and ran through some of his issues. I also mentioned that we were going to see a nutritionist as well about his lack of weight gain. Much to my happy surprise, she told me that we also qualify to see a nutritionist through Early Intervention, and she would try to schedule the nutritionist she works with to come along to Colin’s eval. That’s a nice bonus, because the more people we can have come to us (rather than having to go to them), the easier my life is. 

So we’ll continue to watch Colin closely today and see if we think he needs to go in to see the doctor. I’m a little more nervous than normal because we’re supposed to be going on vacation this week and having a sick little boy away from home would not be good. But I have my fingers crossed that he’s on the mend again. 

Oy vey, what a day

Today has been a very, very busy day. I took the day off, because we had accidentally scheduled Colin for two doctors appointments today — he was supposed to have his hearing test at the audiology department at Illinois Masonic and then he and Veronica had their 15 month appointment (hey, they don’t turn 16 months until tomorrow) at the pediatrician this afternoon. 

So, you may have noticed I said “was supposed to have” his hearing test this morning. Yes, that’s true. We were all set for the appointment, even to the point of putting Colin down for a very early nap, since the appointment was at 10:00, smack in the middle of nap time. Unfortunately, John got to the hospital, waited in line to register, and realized he had not stuck the referral in his wallet like the thought.

They won’t see you without the referral, so John tried calling me to see if I could fax it over to the hospital. And that was no easy task. Neither John nor I have much luck getting cell phone reception at Illinois Masonic, and the one public phone they showed John wouldn’t put the call through. They finally let John use the desk phone, but as luck would have it, his call came at the same time I was upstairs with a crying Veronica, so I didn’t even hear the phone ring.

So a frustrated John and wiped out Colin came home at 10:15. Veronica and I had been planning to head out in search of mittens (because her little hands were like ice cubes this morning when we took Ethan to school), so we decided it was a fine time for a quick family trip to Target. An hour and a half (and $250) later, we were home in time to have a very quick lunch, then off to the pediatrician’s office. 

Colin’s lungs sound rather gurgly, which I could tell even without the stethoscope. So now we’ll be giving Colin at least one treatment a day of the Atrovent to help him breathe easier. Colin has dropped back down lower on the growth charts, despite our somewhat half hearted (or maybe I should say half focused) efforts to ply him with extra calories. He’s still below the chart on both weight and height, but has fallen back further on height.

So we're also now going to be seeing a nutritionist for him. (I want to see a nutritionist for me, but no one has prescribed a visit yet, so I guess I’m out of luck. Darn!) One more thing to squeeze in to our already full calendar. But with luck, it will make a difference.

Veronica is doing great, health-wise (and really in pretty much everything, except her sleeping). She’s gotten even taller (31.5 inches, if they measured correctly) and is in the 75th percentile for height. Her 21 pounds 11 ounces puts her in the 30th percentile for weight.

Both babies were getting pretty tired by now, and this appointment involved a blood draw as well as two shots. They weren’t happy campers by the time we went home. Fortunately, they tend to bounce back pretty quickly (and we’ll give them a dose of Tylenol before bed, just in case), so I am hopeful that tomorrow will be a better day. 

And just for kicks, here are a couple of pictures of them in their Halloween costumes from yesterday.

They each thought the other was cute in their costumes, my little skele-babies.

Colin is loving (to eat) the ghost duck our friend Joy brought him.

Veronica is getting tired of all the photos here. 

What a difference a year makes, huh? This time last year, Colin had only been home from the hospital for a few days, Roni was still hooked up to the apnea monitor, and the two of them together weighed less than Ethan did at birth.

Atrovent, my new best friend

Colin is still miserable with his cold, poor little guy. He’s all stuffed up, so breathing is hard, and his lungs are a little wheezy, so breathing is even harder. On Sunday night, I broke out the emergency inhaler the pulmonologist prescribed at our last visit to help Colin breathe easier. And like that, Atrovent became my new best friend. 

Okay, I’m exaggerating quite a bit there (what, me?), but it really did make a difference. Colin screams like you’re torturing him (which I guess in his eyes we are) when you give him  a treatment, and you have to pin him to the bed to do it. But within 10 minutes each time, he was breathing easier and back asleep.

Ironically, and fortunately, Colin’s regularly scheduled follow up appointment with the pulmonologist was yesterday. John took him this time, so he could meet the new doctor and ask his questions. Colin’s lungs are doing pretty good, just a little wheezy on the right side. No sign of the bronchiolitis at least. The doctor said to just keep doing what we’ve been doing for treatment.

He was worried, however, because Colin has fallen back further from the growth curve. We’ve been trying to get him extra calories since his last appointment, but I wouldn’t call it an all-out effort. (It’s too hard to make all-out efforts with two babies.) But now we’re going to have to step it up more. The pulmonologist also wants Colin to get started in speech therapy now (we were going to wait a bit until he started walking) to address some of his eating issues. 

So … I’ll be calling Early Intervention this week to schedule another assessment with the speech therapist and we’ll see when we can shoe-horn another session into our week. I do feel blessed, though, that we live in Illinois. I have heard horror stories from other parents on some of the online boards I visit about their EI experiences in other states. It makes me appreciate everything our program provides even more. 

Prayers for Colin to heal quickly, and that Veronica and Ethan continue to stay healthy. (And that Mommy and Daddy survive the chaos.)

Wall flower and social butterfly

It’s interesting to see how your kids, who all share the same genetic material and have been raised together in the same environment, all develop their own personalities. It’s even more interesting with the twins, because there isn’t even a time gap with their upbringing. 

Veronica is very much a Mommy’s girl (or Daddy’s if Mommy isn’t around). She still is very reluctant to go to anyone who isn’t Mommy or Daddy — even people she sees every day — and likes to bury her head in our legs if someone comes over to say “hi” to her when we’re out. In social situations right now, Veronica is very much the wall flower: she likes to watch from the sidelines and assess the situation. And she is very happy doing her own thing.

Colin, on the other hand, seems to make friends wherever we go. The last three or four times we’ve been to the park, Colin has found another baby/little kid to play with. Yesterday afternoon, when John took the kids to the park so I could make dinner, he apparently had three friends — twin boys and a little girl, all between 15 and 18 months — that he was playing happily with while Veronica explored. 

It’s funny to watch, because Colin also basks in adult attention. Remember, this is the boy who stopped crying after his first surgery to smile at the nurse when she called him cute. He is very aware of people’s comments, and often gives people a big grin when they say something nice about him and Veronica. 

It’s also fun to see how Colin and Veronica already are inventing little games to play together, even though they can’t talk yet. Sometimes can keep themselves in giggles for a good 20 minutes at a stretch. Veronica loves to run away from Colin, squealing, as he “chases” her around the room. (I use quotes on “chases” because it’s clear sometimes that he has no idea they’re playing a game, although other times he is a full participant in the fun.) They also have been known to play peekaboo with each other, which is funny to watch. 

Of course, we’re not immune to the sibling rivalry, especially when it comes to nabbing space on my lap after I get home from work. Veronica especially is prone to throw punches, slap and push to get her way. Colin is more of a head butt guy — although he also does that as a sign of affection. (A painful sign, sometimes, because he hasn’t developed a good sense of when to stop his forward motion.)

This age (almost 16 months actual/13 adjusted) is a lot of fun in many ways. (It’s exhausting still in others.) I just wish I had more time and fewer chores so I could just play all day.

(I jinxed us, by the way, with my last post. Colin now has a cold and is VERY congested. I broke out his inhaler last night, along with the saline spray and the nasal aspirator — really ticked him off, but at least it cleared him up enough to fall asleep.)

On the mend

After what seems like an endless period of round after round of sickness (it was really only three weeks and two rounds), we’re finally all more or less healthy again. Veronica’s croup cleared up fairly quickly after the steroid dose, and the virus that lingered for another several days seems to have departed. Colin never got the croup, and whatever caused his fever seemed to pass quickly too. 

We’ve been taking advantage of the unseasonably nice weather, and spending a lot of time outside. Veronica would like it even better if we spent all of our time outside. Whenever she comes downstairs, she immediately goes to her shoes and points to them, then points to the door. Or she’ll bring her shoes to me wherever I happen to be, and point to outside. The girl loves her dogs, and they’re all outside the house. So that’s where she wants to be too.

Colin also likes being outside, and it helps with the exercises he’s supposed to be doing for occupational therapy because he crawls on all fours when he’s outside (as opposed to his indoor army crawling style). That helps build his core strength, which he needs to be able to stand on his own. (Hmm … maybe I should try crawling too if it builds core strength.)

Now that the leaves have fallen from our ash tree (the first in the neighborhood to lose its leaves), we have the added bonus of big piles of leaves to sit in, throw in the air, crawl through and generally enjoy thoroughly. Colin especially likes to sit in the leaves and pile them on top of his legs. 

Veronica also enjoys a small measure of freedom when we’re outside, because I end up spending more time making sure Colin is keeping up with us. She will range quite a ways down the sidewalk while I’m trying to help Colin practice his walking. And the farther she gets from us, the faster she starts moving. Fortunately, she’s still much slower than me, and has shed her habit of dashing toward the curb to play in the street. (Darn block party fun.)


Colin isn’t really any closer to walking on his own, although he continues to practice and has gotten very good at cruising. He also is much smoother at getting up and down from standing (although this week he has starting letting go while apparently trying to do a twisting back flip, and has been whacking his head on the ground a lot). His physical therapist started the paper work today to get him orthotics to help with his walking/standing. Apparently it takes about three weeks to get the paperwork through, then we’ll have to take him in for a fitting and wait for them to make the orthotics. But they should help stabilize his ankles in the proper position, and make it easier for him to balance and walk. 


We’re also in the midst of another long run of appointments with all of Colin’s doctors. He had the urologist appointment two weeks ago (we need to schedule his next surgery for either December or January), he sees the pulmonologist next week, the neurologist the week after, then both babies have their (rescheduled) 15 month appointment and will get their second flu shot (and some others). Then Colin will see the dentist (his teeth look like they may have thin enamel, which is common with preemies) to make sure he doesn’t need calcium supplements or sealants to protect his baby teeth. 


It makes me tired just thinking about all those appointments, and Colin’s load is far less than many babies born his weight/gestation. It just makes me very glad we live in a big city because at least all of his doctors are close by. In fact, we can walk or take the train to all of them, which makes life much easier.

Crap. Croup.

Both babies got sick over the weekend — Colin had a fever and Veronica was just “off” on Sunday morning. By Monday, she started coughing. We canceled the babies’ 15-month check-up appointment, which was supposed to be on Tuesday. They were supposed to get shots, and with Colin’s fever we knew that wasn’t going to happy. 

On Monday night, Colin’s fever broke and he started to feel better. But by Tuesday morning it was clear that a trip to the doctor for a sick baby visit with Veronica was in order. 

So I canceled my morning conference calls and Colin and I hung out while John took Veronica to the doctor. He was the third person in line when the doors opened, and the waiting room was full in no time, which is why I kept Colin at home with me. Our doctor is on vacation, but substitute doctor was actually the one we had seen before (the doctor who was surprised when we said that Colin and Veronica were preemies). 


Turns out Veronica has croup, which, of course, is contagious. So Veronica got a prescription for dexamethasone — a strong oral steroid, and ironically, the same steroid I was given before the twins were born to help develop their lungs. Unfortunately, the strength the doctor prescribed didn’t come in a liquid. So John had to crush up the three little pills and feed them to Veronica in some yogurt.  


Her cough is sounding better now, but little girl clearly is not feeling well. And, consequently, she is not sleeping well either. This afternoon, she napped for a whopping 15 minutes. I walked with her in the stroller for more than an hour, hoping she would nod off. She was definitely in a zone, but no sleep. 


The doctor also wanted us to keep Colin and Veronica separated, so Colin wouldn’t get sick. Well, aside from the fact that they’d been sharing toys before we found out what Veronica had, we discovered that even with both of us home it’s nearly impossible to keep two 15 month old babies apart. They want to be with each other, and they always want what the other one is playing with. 

So now we’re watching Colin closely to see if he’s going to end up with croup too. Fingers crossed that he doesn’t, since it potentially could be much worse for him. And here’s hoping Veronica feels better tomorrow and is a little happier.

The amazing Mr. (and Ms.) Fiegel

Despite my occasional worries, Colin continues to amaze me with his leaps forward and his determination to get what he wants. He is one determined little dude! And right now, every fiber of his being is focused on figuring out this walking thing. 

On Saturday, I was playing with the babies in the living room while John and Ethan were at a birthday party. Veronica was showing off her newly minted walking skills (more on that in a minute), and Colin was working on his cruising. He just started really cruising around the room on the furniture about a week ago, and now he uses that skill a lot. 

While I was watching and thinking how much more confident Colin was getting with his cruising, he suddenly let go of the coffee table and reached across the gap to the couch — successfully — and continued his cruising from there. I was very impressed.

He also is trying very hard to find his balance point while standing. When I walk with him holding my hands, he will regularly stop, lean against my legs and let go of my hands. Tonight he even started trying to push away from my legs and balance on his own. (He’s not quite there yet.)

Of course, after a block of doing the walking and trying to balance thing, he got tired of the challenge and raced Veronica by crawling (he won) back home.

And, as you may have guessed, Veronica has fully embraced the walking life. She is now walking every where, including half way to Trader Joe's yesterday, and all the way down the block today. She also is capable of getting pretty close to a run, especially if she sees a dog. 

Not content with just being an official toddler now, she also keeps upping the ante by doing things like working on turning corners, or walking while carrying ever-bigger objects. She also is very proud of her ability to climb the stairs (a trick Colin actually mastered first), which means we have to keep a gate up at both ends of the staircase. 

There is never a dull moment in our house, and it’s getting more exciting every week. 

The other shoe

After having a month without doctor appointments, we’re back in the throws of juggling schedules to make all of our appointments fit. (We’re not doing so well with it — poor Colin has two appointments in one day on the 27th.) This week, Colin finally had his six-month follow-up appointment with the pediatric ophthalmologist (only 2.5 months late) and an appointment at the high-risk clinic at the hospital.

The ophthalmologist appointment went well. John took Colin, who was very quiet and snuggly throughout the visit. His vision is fine, and he does not need glass nor does he need to see an eye doctor again until he’s five, unless we suspect he’s having trouble seeing. 

The appointment today at the hospital was a mixed bag. I always enjoy going back to the hospital with one of the babies. People there still remember us, and it’s nice to be able to chat again with so many of the people who helped keep us sane while we were practically living there last year. 

The appointments at the high risk clinic (at least at our hospital) are always the same routine: Colin gets weighed (he’s up to 17 pounds, but I think their scale tends to weigh a bit light), measured (he's 27.5 inches now) and has his blood pressure taken. Then we see an occupational therapist, and finally one of the neonatologists from the hospital. They assess the babies as preemies (whereas their pediatrician assesses them as babies), and make recommendations about specialists or extra services we may want to pursue. 

Occupational therapy assessment has gone quite quickly for us the last two visits, because Colin’s therapist is also the therapist at the clinic right now. When she walked into the room, Colin’s eyes lit up and he reached out to her. He had fun “playing” the games she presented him with, and was very proud of himself. Since she already knows him well, this ends up almost being like an extra session.

Colin is very advanced in his fine motor skills — testing between 14 and 15 months (at and above his actual age). However, he is still only at a six- to seven-month equivalent in his gross motor skills. He also remains high tone (especially in his shoulders and ankles) and has slight torticollis (his head favors one side/doesn’t rotate fully to the other side). 

As a result, he presents a mixed bag, from a developmental standpoint. His coordination and fine motor skills are very good, and he’s making progress (very slowly) on his gross motor skills. But at the same time, his tone is not improving much (or at all) in two of the key areas. So Colin is now adding another specialist to his collection: a neurologist.

This is that proverbial “other shoe” dropping that people always talk about waiting for, and in a way I have been waiting for it. While no one said it, what they’re having Colin evaluated for is cerebral palsy. And honestly, part of me is surprised it hadn’t come up sooner. He is at very high risk for cerebral palsy, and has several of the classic “symptoms” or signs. 

Now, in reality, a diagnosis of CP doesn’t really affect anything — it’s not a degenerative or progressive disease. It is what it is. And if Colin really has CP, he isn’t going to be any different after labeling it as such. He’s still going to be our gung ho, into everything, working on learning how to walk and ignoring sitting little guy. It just means it isn’t likely to get any easier for him as he gets older. He’s not going to just grow out of the need to work twice as hard to accomplish these milestones.

Of course, Colin doesn’t present a classic case, because of the strong coordination and fine motor skills. So the neurologist may say it’s nothing to worry about, or that we should wait until he’s older to do an assessment. We won’t know for sure until next month. But in the mean time, that tender shoot of normalcy has again been squashed under foot. We’ve been reminded that our babies aren’t normal — they’re preemies.

12 Steps

No, not a recovery program. That’s Roni’s current record for steps taken in a row. She did that today — walking across the living room to get to John and Colin. (Ethan and I were at Ikea, so we missed it.) Tonight before dinner, she took another 10 steps in the kitchen. And she has been doing shorter “walks” all day long. I have a feeling it won’t be long now … her confidence is growing. 

Colin too is making leaps forward again. He is rapidly mastering the art of standing up (and more slowly mastering the art of getting back down again). He doesn’t do it “right,” which only poses a problem because his style for standing could stretch out the ligaments in his feet, which would make running and jumping (later) harder. 

As a result, we have switched gears in PT, and are helping Colin learn how to stand properly rather than focusing so much on sitting. We’re still trying to help him learn how to get into a sitting position, and spending a little time on getting out of sitting with a bit more grace (and fewer bumps to the head). But with Colin, you’ve really got to go where his interest lies, and right now that’s with standing.

Both babies are making progress in the communication department. Colin now signs “please” and “more” in addition to waving and doing high fives. He isn’t really speaking any words consistently, but he does make the full range of sounds so we’re not concerned about his speech (yet anyway). Veronica now says “uh oh” and “bye-bye” and has many signs (fan, please, banana, more, up, out, down … I really should make a list at some point). 

Colin’s insatiable curiosity and dogged persistence are running us ragged. When he’s awake, Colin is invariably trying to do something he’s not supposed to. I feel like every five minutes we’re having to pull him down from the shelves, or off the ledge under the table, or off the treadmill, or out of the kitchen cabinets. 

And two minutes later, he’s right back at it again. And again. And again. We’ve run out of gates to block things off. Maybe we’ll just buy a big cage … just kidding.

Look at me Mom!

“Hey!”

“Colin, it’s 4:00 in the morning.”

“Hey! Hey!”

“Okay, okay. I’m coming in.”

I had been sleeping on the couch (because my back hurts and the couch makes it hurt less, for whatever reason) when Colin started shouting what sounded very much like “Hey!” from his crib at 4:00 this morning. I tried to ignore him for a little while to see if he would go back to sleep, but he just kept getting louder, so I gave up and went in to see what he needed.

And there he stood, in his crib, leaning over the side rail all proud of his little self. 

Yes, our boy who can’t get into a sitting position on his own (or out of it for that matter) has figured out how the pull himself up in his crib. 

To be honest, it wasn’t a surprise. He had done the same thing once during the day with John, and is pulling up on everything in sight. But I was kind of hoping we could skip the pull-up-in-the-crib-in-the-middle-of-the-night thing. Oh well.

First on our agenda for today — lower the crib mattress. We didn’t need to rush into moving the mattress with Veronica. She’s not likely to vault herself over the side of the crib. That’s just not her style. 

Colin, on the other hand, is the baby most likely to take up sky diving before the age of 7. The boy has no fear (and consequently, no sense of danger). So he spent the rest of the night (awake) in bed with me, so I could keep him from going airborne.

So I’m tired, he’s proud of himself, and we’re on our way to having the first baby who started walking before he could sit. (Okay, probably not the first. But one of the few, I would guess.)

Crazy kid.

The cheese stands alone …

And so does Veronica. Yes, our girl has mastered the art of balancing on two feet. She is cruising all over now, and loves to walk around (as long as you’re holding her hands). She even took a single step on her own a couple of times. It won’t be long now before she realizes she can do it (walking that is) all by herself.

And this has made Colin jealous, so he is working on standing alone too. (We’ll just skip the whole sitting up thing, Mom. This standing and walking bit looks so much more interesting.) Now that we’ve gotten the constipation problem mostly under control (thank you Miralax), Colin is doing much better with sitting — he can sit on his own for as much as 20 minutes, but he can’t get into or out of the sitting position on his own. But he no longer wants to be put into the sitting position, he wants to stand or kneel. And he can get there on his own. He just can’t always get back down.

Both babies also are making strides in communication as well. Veronica is regularly signing “more.” It is her go-to sign for everything, in fact. If she wants something, she signs “more.” If she’s happy, she signs “more.” So we’ve been trying hard to get her to pick up some additional signs to make our lives easier.

Finally, she has added some new signs to her repertoire. She will now sign milk; banana (sometimes); please (started doing this for ice cream); up; and today, spontaneously, she added bath.

I say spontaneously because we haven’t shown her the sign for bath. But this morning, when I was changing the babies’ diapers on the bed, Veronica sat up, pointed to the bathroom and started moving her hands across her body like she was bathing. When I asked if she wanted a bath, she started signing “more.”

Colin isn’t quite as far along with the signing, but he now will regularly sign “more,” and has done what we think might be his attempt at “milk” a couple of times. As with everything, I’m sure Colin will pick up the signs when he feels like he’ll benefit from using them and ignore us until then. He’s very practical that way.

Life continues to get more interesting, chasing two mobile and independent babies around the house. But in many ways, it is getting more fun too.

Piddles and puddles and piles, oh my!

I sometimes let the babies crawl around naked during the last diaper change before bedtime. They enjoy the freedom and I think it’s good for their little tushies to air out a bit. Occasionally I’ve had to clean up a little puddle, but nothing much.

Until last night.

I had both Colin and Veronica upstairs while John was down doing something (dishes, making a bottle, working … already I don’t remember), so I decided I would strip them both down for bed. I took Veronica’s diaper off first, and she immediately crawled to the bedroom door, peed on the carpet and went out to play in the living room. 

So I cleaned up the little piddle on the carpet and went to change Colin. As soon as I set him down, he headed into the bathroom to play with the scale, so I quick went to check on Veronica. 

They were both doing fine, so I put a couple of clothes away and went to check on them again. I shouldn’t have waited. 

Veronica was standing at her big cube, looking very excitedly at the ground. I went to see what she was getting so happy about. It was a GIANT. Pile. of. Poop. 

GIANT! I mean, I don’t know where it all came from. It never would have all fit into a diaper. And there was my baby girl, reaching for it. Argh! I managed to snatch her up before her hand made contact, and took her into the bathroom to clean her up. 

And there I found Colin, happily rolling around in the biggest puddle of pee imaginable. It was a freaking lake. He was covered from head to toe in pee, and giggling away as he rolled through it again. (Did I mention John was downstairs?)

My hands were full of poopy Veronica, so how was I supposed to pick up pee-covered Colin? I decided pee was less of an issue, and quickly cleaned Veronica up first. By the time I got back into the bathroom for Colin, he had managed to spread the pee-puddle pretty thoroughly around the bathroom. 

At this point, John came up and after seeing the poo pile and the soaking wet Colin, figured out pretty quickly what happened — and laughed at me. But he did help clean up the mess, so I’ll forgive him. 

Oh, the joys of parenting twins.

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.

Babies' Baptism

Today, at long last, Colin and Veronica were baptized. We were fortunate enough to have our family able to join us for the celebration, with their three aunts serving as sponsors. They did fairly well, overall. 

Another little girl was baptized this morning as well, and she went first. Veronica went second, and was not very happy about being dunked in the water, as you can see. 

So by the time we got to Colin (who was last, by design, in case he freaked out), he knew what was coming. He didn’t even wait for the water; he just started crying as soon as Pastor Michelle picked him up.

Both babies settled down right away after getting back into their towels, which was pretty impressive considering it was in the middle of nap time, and I think they enjoyed being the center of attention. 

We had a very nice celebration afterward, with the extended family, at our house. Colin and Veronica’s favorite gift was actually the gift bag from Grandma Fiegel. They spent a lot of time fighting over it and passing it back and forth. 

It was a very nice warm up for next weekend, when we celebrate their first birthday.

(I put a few more photos on the photo page, if anyone wants to see more.)