Thankful

I wanted to write this for Thanksgiving, but we were too busy feasting and enjoying our time as a family. So I will write tonight instead. 

This year, more than ever, I am aware of how much we have to be thankful for. I am thankful, of course, for Colin and Veronica and the fact that they are healthy and growing. I am thankful for all of the doctors and nurses who helped them get to this point. 

I am thankful for all of our family and friends and neighbors who together have helped us keep it together throughout this year — I'm not sure we would have made it through without you.

I am thankful to have a good job, a nice home and a safe neighborhood. And I am especially thankful to have good insurance, without which we would never be able to pay the medical bills we have amassed since the babies were born (more than $1 million so far). 

This has been a chaotic and wonderful year, and we truly have been blessed. And as I watch Colin and Veronica develop their own personalities and begin to move out of that “newborn” baby stage, I am very grateful to be where I am today. 

Thank you.

Stalled out

Colin had his follow-up appointment at the high-risk clinic at the hospital today. Lucky boy also had his next opthamologist appointment to check on his ROP. We were at the hospital from 8:00 until after 10:30 — it was a long morning for both of us.

On the good front, Colin’s ROP has resolved itself. He has some mild scarring on the edges of his retinas, but that shouldn’t affect his vision at all. He needs to go back in for a follow-up appointment in six months, but otherwise is fine, vision-wise. 

After the eye exam, Colin saw the occupational therapist. Unfortunately, because they had to dilate Colin’s eyes, he wasn’t doing as well as usual on the tracking exercises (following an object with his eyes and/or head as it is moved from side to side in front of him). She also looks at things like his reflexes, flexibility, ability to roll from side to front, etc. 

Colin’s adjusted age will be two months on Sunday. Right now, developmentally, he is scoring like a one-month-old baby — so he is behind where he should be by about a month. (Veronica scored about a month ahead of where she should have been.) I do think he’s really ahead of where he performed today — between the eye exam and really being ready for a nap, he wasn’t really “on,” but you can’t really control those things. 

Both babies will be getting visits from Early Intervention for occupational therapy and, eventually, speech therapy too. So any lags in their development will be caught (and hopefully successfully addressed) early. I think at least part of his delay is related to being so small. 

And speaking of small, he did not gain any weight between his pediatrician appointment last week and today. He only tipped the scales at 6 pounds (down an ounce, but that’s probably just the difference between the two scales). So he is back on the higher calorie (only 22 calorie right now, not the 30 cal he was on in the hospital) formula now. The doctor wants him to get the formula for three feeds a day, and to continue with it at least until he’s one. 

He has his next pediatrician appointment on December 7th, so we’ll be anxious to see if he has gained anything of note by then. Keep your fingers crossed. I know I will. 

A serious problem

Every year, more than half a million babies — 1 in 8 — are born prematurely in the United States. 

Premature birth is the leading cause of newborn death worldwide.

The United States scored a D on the 2010 premature birth report card. No state in the U.S. scored higher than a C. 

These are sobering statistics, and ones we were oblivious to until July, when our babies were born too soon.

November 17 is Prematurity Awareness Day, and today I am joining hundreds of others bloggers who are uniting to make a difference. Those of you who have been following the blog are probably much more aware today of the challenges facing premature babies. I know we are. But prematurity is an issue that affects many more people than our family — and many are not as fortunate as us in the outcome.

Micro-preemies like Colin and Veronica face the greatest threat from their premature birth, but even babies born just a few weeks too soon can face serious health challenges and are at risk of lifelong disabilities. 

Babies are born early for a variety of reasons, only a very few of which are within the mother's control. Most preemies are born to mothers who did all they could to have a healthy pregnancy. Mothers like me. Yet our babies still come too soon.

No one understands why some babies, like Colin, suffer from intrauterine growth restriction (IUGR). Yet. And while the research done tomorrow won’t make a difference to Colin, it could save the life of someone else’s child. 

We were lucky. Both our babies survived their early birth and seem relatively untouched by their experience. Many parents won’t be as fortunate. 

If you want to help make a difference in the lives of these future children, I encourage you to support the March of Dimes [http://www.marchofdimes.com/giving.html]. Their Prematurity Research Initiative is working to unlock the causes of prematurity so that we can find a way to prevent it. So that other babies and their families do not have to travel on a Preemie Journey of their own.

Everybody's babies

It’s hard to explain some times, but I really feel like Colin and Veronica aren’t just our babies — they’re everybody’s babies. So many people have invested so much time and love and hopes and prayers on their (and our) behalf. And in many ways, a little bit of Colin and Veronica are theirs too, because we could not have made it through the challenges their early arrival posed without all that support. 

It’s fun, now that they’re both home and doing well, to be able to share them with some of the people who have been rooting for them for so long. (Sorry to those of you who don’t live near by, you’ll just have to make do with the pictures — which I updated again tonight.)

Although we’re really not supposed to be taking either twin to places where many people are gathered during the cold and flu season here, we have occasionally bent that rule with Veronica. Yesterday, I took her to church for the first time. (She’s been to Sunday school a couple of times, but we haven’t stayed for the service before this weekend.) We have received so much love and support from our church family, that I felt like I was bringing Veronica to her first family gathering, and introducing her to her clan. 

And she did very well. I’m quite certain she has never seen so many people in one place before — and her eyes got very big looking around some times. But she didn’t fuss much (until she got hungry), and I think she enjoyed being fussed over too. 

That’s one of the things I feel like I missed out on, by having my babies born so early. I haven’t had the opportunity to show them off and enjoy all of the attention that comes with having a newborn around. Unfortunately, we’ll have to wait a while longer before we feel comfortable introducing Colin, because of his chronic lung disease. But I feel happy that at least I was able to bring Veronica out for a day. 

The bucket post

Okay, I haven’t been the best at keeping this up-to-date recently. Balancing work, two babies, a first grader and keeping the house moving (even with the full-time help of a wonderful husband) doesn’t leave much time or energy for anything else. 

Colin and Veronica continue to grow — one rather slowly (Colin is up to 6 pounds 1 ounce, which is only 4 ounces more than his discharge weight) and the other so fast it’s hard to keep up with (Veronica is up to 11 pounds already). They also continue to develop and learn new “tricks” every week.

Colin celebrated Veteran’s Day by rolling over — twice — from his tummy to his back. He really hates being on his stomach because he can’t see what’s going on. Even when I carry him or put him in the Moby wrap, he manages to squirm around until he is face up and out so he can see what’s going on. Veronica is incredibly strong and does very well “sitting” up (while supported). Her trunk and head control are very good.

Veronica is finally starting to sleep for longer stretches at night. Last night she went from 9:00 until 2:30 without waking up. Colin wakes up more often, but I expect that because he is so much smaller. Unfortunately, this week at least, he hasn’t been doing a good job with his nursing (we think) and is not eating enough to keep him satisfied for long. If we don’t give him a bottle, he wants to eat every two hours. 

Both babies are turning into quite the vocalists — they are both making an amazing array of sounds and coos and babbles. They both also are on the verge of having real laughs — which is quite fun to see. Although they do have their fussy moments (all day on Monday last week), they don’t seem to be fussier than “normal” babies — something I understand is often true of preemies.

Unfortunately, they haven’t yet settled into any type of a regular schedule, which make it challenging to plan anything during the day. Yesterday John and I had planned to take the babies to the store (to get them used to being in the car) mid-morning, but they both fell asleep immediately after eating (which came immediately after their last nap) and we didn’t make it out the door until after noon. 

Overall, it is still crazy at our house. Trying to adjust to my work schedule and still eating together and getting everyone to bed on time is a work in progress. But we’re starting to make a tiny bit of progress, so there’s hope …

I will survive (I think)

Well, we survived my first “week” back at work — if you can call two days a week. Everything went relatively smoothly. I got Ethan to school on time, John was able to get everyone out the door to pick him up. The babies were fed and changed on a regular basis. Beyond that … well, that’s enough for now.

It helps that I have such a flexible and supportive work environment to return to (and I’m not just saying that because I know some of you are reading this). I do really love my co-workers and how supportive they have been, and having a dedicated space for pumping and a flexible schedule that allows me to take Ethan to school are priceless.

Mondays and Fridays are going to be the most challenging for John, since those are the two days he is flying solo with the twins. I am going to be working from home on Tuesdays and Thursdays for now, and my parents have been coming on Wednesdays (at least until the weather turns to winter on us), so at least there are extra hands around on those days.