Changes, and more changes

We have reached a point of rapid development with Colin and Veronica. Every day I swear they are figuring new things out and putting more pieces together. I remember this from with Ethan and know other moms have commented on the same thing — it’s almost like you can see their brains working as you watch them some times. 

Veronica rolled over by herself on Christmas Day for the first time. She hadn’t really shown any signs of rolling (at least that I’ve noticed) until the Early Intervention occupational therapist was playing with her last week. One of the things she (the therapist) did was put Veronica on her side to see if she could get the rest of the way over. Veronica tried very hard, but needed a little help to finish the roll. 

Apparently that exercise piqued her interest, because she started working at it — on the changing table later that day, on the bed the next day. And finally, on her new foam puzzle mat on Christmas she had success. 

Colin can get from his stomach to his back, but his technique is more of a “I’m so mad that you’re making me be on my stomach that I’m going to fling my body weight around until I get out of here” approach. It works, but it sure isn’t pretty. And I’m not sure he could do it if he wasn’t angry.

Colin seems to be getting a little more tolerant of being held more upright. He spends a lot of time arching backward (in part, I’ve been told, because of his reflux) and prefers (strongly) to be held “just so” — in your left arm, snuggled against your body, with his head at a particular angle so he can see the ceiling fans (or the lights). The past two days, however, he has let me hold him upright for a good half an hour. He also is willing to spend a little more time on his stomach if he is up against my chest. I’m happy about that.

Both Colin and Veronica will begin having weekly occupational therapy sessions through Early Intervention — probably starting in January. (We just have to wait for the insurance company to say whether they’ll pay for it or not.) With Colin, they will be working on helping him deal with stimulus so he doesn’t get overwhelmed as easily, and on developing more stamina so he can develop strength. For Veronica, they will be making sure she continues to balance out both sides of her body (she prefers the left) and helping her develop a little more muscle tone in her shoulders.

The physical therapist wasn’t able to make it for our initial assessment, so she is coming this morning to evaluate the babies. (Occupational therapy focuses more on the fine motor skills, physical therapy on the gross motor skills.) So we will see whether they — Colin in particular — will get physical therapy too.

I am extremely grateful that Illinois has an Early Intervention program so that we can do everything possible to help Colin and Veronica overcome the disadvantages of prematurity before they enter the school system. But I am even more grateful that we are able to have John as a stay at home parent. I don’t know how parents who both work outside the house could possibly manage to take advantage of the programs. Even though the therapists are coming to our house at this point, it’s quite a lot to manage.

The gift of laughter

Colin laughed for the first time today — a real, out loud, body-shaking laugh. And he did it several times while John was playing with him on the changing table. It was a beautiful sound. 

Veronica had her first laugh on Saturday last week. She too has a whole-body beautiful laugh, and enjoys using it too. 

I can’t think of a nicer way to celebrate Christmas than by listening to our little babies, who have been through so much already in their little lives, both laughing out loud. (We got to listen to Ethan rolling on the floor with laughter this evening too.) It’s the happiest sound in the world. 

Merry Christmas everyone. Enjoy the little miracles this season, just like we are.

A very busy day

Okay, it is the holiday season and everyone expects the days to be busy. The only difference is what fills our days now. Although we’re still trying to do some of our traditional holiday season things, it certainly is much harder with a baby (or two) in the house. Add to that the babies’ schedule of appointments for various needs, and we have a crazy season.

Today, Colin and Veronica meet with their Early Intervention team for the first time. Early Intervention is a program run by the state (I think I read somewhere that about 30 states have an Early Intervention program) to provide therapy to children (birth through age 3 in Illinois) who have or are at risk for a disability or developmental delay.

Colin automatically qualifies for Early Intervention because he was born weighing less than two pounds. Veronica will qualify for therapy services in any area where she is 30% or more behind where she should be. The idea is to provide therapy early to give kids a chance to catch up before they enter the school system, rather than waiting until they are in school and are behind their peers.

Today the babies have their assessment, so a team of four therapists (development, speech, occupational and physical, I believe) will be coming to the house to play with Colin and Veronica and see how they do. Based on this assessment, they will put together a recommended plan for therapy, which we can choose to follow or not. 

We’ll follow their recommendations because, with John being home with the babies, we can handle the extra appointments. I imagine some families with two working parents may find it challenging to squeeze anything else into their days. (I honestly don’t know how someone with a high-needs child who can’t afford to have one parent home manages to fit everything in. I can see that being a real problem for many people.)

Then, later this afternoon, Colin has an appointment with the urologist. He has developed an inguinal hernia (where the intestine drops into the scrotum), which will probably require surgery. (Inguinal hernias are fairly common in preemies because the opening between the abdominal cavity and the scrotum often doesn’t close completely.) 

(As a side note, Veronica's umbilical hernia has already resolved itself and she once again has a “normal” belly button.)

Cutie Elves

Here a glimpse of our babies in one of the very happy moments. They are both laughing now — especially Veronica, who at dinner tonight spent a good five minutes just cracking up. 

Celebrating Christmas and looking like twins (at last), here are two of our three little elves:

Veronica and Colin getting ready for Christmas, snuggling together.

Laughing Colin enjoying a kicky Veronica ride.

Thumper and Cry Guy

Colin and Veronica have developed very different sleep habits (as they have with all their habits, really). And while I’m sure they’ll very soon migrate into yet another pattern, as they always do, right now I’m dubbing them Thumper and Cry Guy.

Veronica is Thumper. She actually is a very good sleeper (right, now I’ve jinxed it) and is able to soothe herself to sleep in a way that neither of her brothers are/were able to. She has a very funny way of doing it: When I lay her down after nursing (if she wakes up at all), she lifts both legs and thumps them down on the mattress in her crib until she falls asleep. 

She can sometimes thump her way all the way across the crib, and occasionally even will work herself sideways. Unfortunately, her thumping is very loud, which typically will wake up Colin, who turns into:

Cry Guy

Colin seems convinced that sleep is something designed to keep him from participating in something fun. Or seeing something interesting. Or … he doesn’t know what might be happening when his eyes are closed, but he is determined not to let anything go by without him being aware of it.

This leads to some very LONG nights for John and I. Colin doesn’t soothe easily, and he cries loudly enough to wake the dead (or Ethan, in this case). For this reason, we don’t like to let him go too long. 

We’re both hoping this is a phase that will pass soon (and believe me, it can’t pass quickly enough). Otherwise we may soon find out first hand just how devastating sleep deprivation can be as a form of torture.

Joy and delight

We had a little scare with Colin last week that ended up with him in the hospital overnight. (And who knew we could fit so many firemen in our little living room?) 

He was struggling to breathe and foaming at the mouth, so we called 911. In the couple of minutes it took for the first crew to arrive, Colin had mostly gotten through it, but we took him to the hospital anyway, to find out what happened. After keeping him in for observation for a day, he got a clean bill of health. As best we can tell, he was choking on some phlegm or saliva and just couldn’t clear it out himself. 

Other than that little scare, things are generally going very well with the babies.They are both growing like weeds (Colin is up to 7 pounds 6 ounces and Veronica weights 12 pounds 3 ounces), and are becoming very fun little creatures. They have discovered joy.

Of course, their absolute favorite thing (like most babies I know) are the ceiling fans. They can watch the fan and giggle for a long time. 

Veronica and Colin chilling out watching the ceiling fan.

They also both have started to commune with “the light.” We have a small LED light next to the changing table, and the one day I started turning it up toward the ceiling because it lit the room better. Both babies got so excited at the circle it made on the ceiling. They'll sit on the changing table and “chat” with the light for as much as half an hour. It’s very funny.

They both have beautiful smiles, and are starting to use them more often. They are also more or less laughing now. Colin, in particular, seems to crack himself up when he does something mischievous. 

Like the night when I was putting him to bed and he was all swaddled with his pacifier in his mouth. He looked up at me, made eye contact and spit his pacifier up into the air. Then he just smirked and started laughing. Of course, I have to admit, I started laughing too. He was so funny. Not really conducive to getting him to sleep, but funny none the less.

We’re crazy busy here, between the holidays, my busy work schedule, Ethan’s school activities and trying to meet the babies’ needs. But I will try to keep posting on a somewhat regular schedule. Really, I will.

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.

Not so controlled chaos

As I am sure any mother of multiples will say, having both babies at home has been a bit chaotic. Some days they seem to be moving toward a similar schedule, others they are miles apart in their “routines.” And my thoughts on whether a similar schedule would be easier or more challenging shifts about as fast. 

Both babies are nursing well — a big surprise given the struggles we had with Colin while he was still in the hospital. Veronica likes to eat, not matter what the delivery method. Colin seems right now to actually prefer the breast to bottle, which could prove challenging when I go back to work on Thursday.

They’re all over the board with sleeping right now too. Some nights they’ll both go five or five and a half hours without waking up, others it’s every three hours like clockwork. Colin, however, is definitely the better sleeper of the pair.

We’re working very hard on getting them to sleep in the co-sleeper all night. When Veronica came home, we were a little lax about putting her back in the co-sleeper because she fell asleep (and stayed asleep) better when she was lying in bed with us. But that doesn’t work so well with two babies. (And, to be honest, she took up so much space in our bed that one of us usually ended up sleeping somewhere else when it was just her.) Now we’re paying the price because she expects that snuggle to get her to sleep. [Sigh — self-inflicted pain.]

Colin had his first pediatrician appointment on Monday. He still weighed 5 pounds 13 ounces — his discharge weight. We were hoping he would gain, but afraid he would lose once he came home. The doctor at the hospital took him back off the Prevacid before discharge, and after a couple of days at home, Colin was having eating issues again. So I asked the pediatrician if we could put him back on to see if it would help. He’s on Zantac this time, and it seems to be helping.

Colin is still seeing the opthalmologist at the hospital every few weeks to follow his ROP [the eye disease preemies are prone toward]. At his appointment on Friday, it seems the ROP is regressing. But he still has immature blood vessels in his eyes, so we will go back again in two weeks for another exam. Then, the doctor believes, Colin will be able to move to the six-month exam schedule Veronica is on. Fortunately, the opthalmologist who has been seeing them since they were born has offices near our house, so they can continue to see him.

So we’ve survived our first week with two babies, and they have too. Everyone but me is relatively healthy. I ended up getting sick on Wednesday, just in time to bring Colin home. Now I have a cough I just can’t shake, which wakes the babies up when they’re nursing at night. (It wakes John and I up too, but I’m more concerned about them right now.) I keep reminding myself that eventually they’ll be ready to fall into a schedule with regular naps and bedtimes, and that soon this crazy “newborn” period will all be a distant memory. Until then, thank God for coffee.

Welcome home Colin

Welcome home Colin! We’re so glad you’re here.

Enjoy all of the wonderful sights and sounds of your new home. (But maybe today you can spend a little more time sleeping and less time staring at everything. It will still be there tomorrow.)

Enjoy getting to know Veronica again too. 

We love you baby boy!

(More photos in the album, for those who want to see more.)

Yes, today

Despite my doubts on Monday when Colin’s doctor said he would be home on Wednesday, here he is, in my arms at home. No monitors. No oxygen. Just him. Yeah.

Thank you to everyone whose hopes and prayers and hard work helped contribute to the miracle that is Colin. 

Now I just hope everybody sleeps.

I’ll post pictures tomorrow.

Today?

Well, unless Colin fails the car seat test (I would be a little surprised if he did — he’s quite strong) or they found something unexpected in the pneumogram last night, today could be homecoming day. 

He continues to do quite well on his feedings — especially since they’ve made him ad lib, meaning he has more control over when and how much he eats. In fact, yesterday he went from having to be coaxed into eating a full 45 ml to eating between 50 and 60 ml each feed. 

So we’re getting ready, just in case, but trying not to bank too much on today being the day. We’ll keep everyone posted.

No more O2

Apparently our multi-pronged “attacks” on Colin’s problems are doing the trick. He has now been off oxygen for a day and a half and has been doing well without it. And, whether it’s because he no longer has the annoyance of the cannula, or the transfusion has given him the extra energy, or the reflux was making him refuse the bottle, he is doing better on his feeds as well. 

He took nearly all of his feedings by mouth yesterday — including actually nursing for the first time for a full feeding. As of 11:00 last night, he had only needed one full feeding by tube (he was so sound asleep at 3:00 that I couldn’t wake him up) and had only one partial feeding (at 9:00 yesterday morning). 

Eat, Colin, eat! 

We took Veronica in yesterday afternoon to see the nurses again (and to peek at Colin through the window, since she’s not allowed back in the nursery). Everyone was amazed at how big she is getting (as are we), and it was fun to be able to show her off to the people who played such a large role in getting her to this point.

She also had her first follow-up appointment at the high-risk clinic on Friday. She saw both one of the neonatologists and a occupational therapist. Unfortunately, the neo who was supposed to be at the clinic, and who had reviewed the data from Veronica’s monitor, was in labor when we had our appointment. Because he hadn’t seen the data, the doctor who saw Veronica was uncomfortable making any kind of recommendation about her monitor, so we’re still on it for now. 

Yesterday the overwrite light came on (meaning it’s out of memory), so I’ll have to ask if they want to have the data downloaded already. If so, maybe we can get her off the beast once and for all. (We get a lot of alarms, but I don’t believe any of them have been for real episodes in the last at least 3 weeks. Instead, they are because the headband that holds the leads down is getting stretched out, or because she’s nursing and snuggled close and they’re picking up my breathing, not hers.)

Other than that completely understandable disappointment, Veronica’s appointment went well. She’s very healthy and developing well. Her adjusted age (how old she would be if she had been born on time, and what they measure development from) is only three weeks, but developmentally she is between a one-month and two-month baby. So she’s actually a bit ahead of where we’d expect her to be. 

So we’re back on the top of the roller coaster and simultaneously bracing for and hoping against another drop down. Fingers crossed … maybe we’ll all be home together yet.

Ending the hunger strike

The only task Colin needs to accomplish before coming home is to be able to eat without his NG (nasal-gastro) tube. (We’d love him to be off oxygen, but he doesn’t have to be in order to come home.) Unfortunately, that simple task of eating continues to be beyond Colin’s grasp. In fact, we’ve been backsliding on his eating, despite the devoted and persistent attention of his nurses and parents. 

So yesterday, we decided to make an all-out attack on several possible reasons for his lack of interest in eating: at the doctor’s suggestion, we addressed his low hematocrit levels with yet another transfusion; he got another chest x-ray to make sure he doesn’t have any new problems that would cause him to work harder on breathing (and have less energy left for eating; and we [finally] are trying him on Prevacid to see if John and I (and several nurses) are right about him having reflux. (We had asked about this twice before. I guess 3rd time’s the charm on this one.)

So far, the push seems to be working: Colin took all his feeds by bottle overnight. (Of course, he had his magic nurse who always seems to have success with him and eating, so we’ll have to see how the day goes.) 

His nurse also had him off the oxygen overnight without any problems. Of course, when I called this morning to let them know I was going to miss the 9:00 feeding, I forgot to ask if he was back on or not. Silly me. 

I’m getting rather anxious (and discouraged) right now, since I am going back to work in less than two weeks. I really would like to have him home before I go back — otherwise, squeezing in my Colin time is going to make for a brutal schedule. At this point, I don’t expect that he’ll make it (home before I go back to work that is), but I would feel better if we at least were making progress. So I’m keeping my fingers crossed, again.

Differences

It’s interesting to see the differences between Colin and Veronica. Besides the obvious — he’s approaching 6 pounds, she’s more than 9; she has lots of darker hair, he has a fuzz of blond; she’s home and has had very few problems from being born early, he’s still in the hospital on oxygen — they each are developing in their own ways.

Both babies are very strong, and have good head and neck control. They both enjoy tummy time, and like to push up and look around when they’re awake. Colin prefers to be held in a “cradle” hold so he can see. When you snuggle him on your chest, he will either push up and look around, or wiggle his way down to his preferred position. Veronica, on the other hand, loves to be held snuggled against the chest — at least for a while. Eventually she wiggles down to be cradled as well. 

Colin opens his hands quite regularly; Veronica keeps hers in fists most of the time. 

Colin will track a toy with his eyes (and by turning his head) as you move it from one side to the other; Veronica doesn’t do this yet. She bats at toys when they hang above her head, but Colin grabs things (when placed in his grasp) and hangs on for quite some time.

Veronica has discovered her hands and brings them to her mouth to suck on somewhat regularly; Colin still is attached to his pacifier. 

Veronica loves to nurse; Colin prefers the bottle. 

Colin seems to recognize Mom’s voice (and probably Dad’s too, but I’m not there to see it so I don’t know for sure), but I haven’t noticed the same response with Veronica.

Both babies prefer to be held over lying in their cribs, and both are capable of crying for long periods of time — which will be interesting when they both are home.

How low can he go?

Not much lower, as it stands. Yes, Colin has finally reached the bottom of his oxygen levels. Last night, when I left, he was at 21% oxygen (room air) with only 1/8 liter flow. After this, it’s time to breathe on his own!  

Actually, Colin is pretty much breathing on his own already — he pulls the cannula out of his nose so often that the settings now provide more of a suggestion of air in the neighborhood of his nose, rather than actually sending anything into his lungs. When I spoke with the doctor on Saturday, he said that Colin probably would only need to stay on this setting for a day or so, as long as he seems to be tolerating it. Yippee!

Colin is also off formula and back on all breast milk. We’re still fortifying the milk to 24 calories (it’s only 20 calories in its natural state) to help him gain weight, but at least he no longer is getting different tastes at each feeding. Some of the nurses think that Colin is particularly sensitive to taste and that may be contributing to his lack of interest in the bottle.

And he is starting to do better with the bottle — his last hurdle to overcome before he can head home. He’s up to taking about half of his feeds entirely or very close to entirely by bottle. (Still no interest in breastfeeding, but at least he’s eating.) So, we are getting close (again) to being able to bring him home. 

Because he’s getting older, Colin is starting to be fussier in the crib. To spare the nurses (who spend a lot of time holding him when we’re not there), I brought in a vibrating bouncy seat for him — just like his friend Connor had before he went home. 

We tried it out for about 5 minutes last night, and Colin really seemed to like it. One of the toys hanging down from the overhead bar is an elephant with a mirror on the back side. When I put Colin in his seat, the mirror was facing him, and he immediately started reaching for it to see the “other baby.” I used some of our rings to lower the toys so his little arms could reach them, and he spent the whole time staring at that baby in the mirror and trying to touch him.

On the home front, Veronica and Ethan both have/had colds. Ethan seems to be getting over his, but Veronica still sounds like a pig hunting truffles at night. John and I have been taking turns sleeping with her so the other one can get some sleep, and last night I almost moved out to the couch and left her the entire queen-sized bed to herself. But I managed to fall back to sleep. 

We have our first appointment at the hospital’s preemie follow-up clinic on Friday. Veronica’s doctor will decide whether to discontinue her caffeine in anticipation of (we hope) getting her off the monitor before too long. Fingers crossed on that one — we really would like to minimize how long we have two babies on monitors.

We said goodbye to another of our favorite roomies last night. Little Israel got to go home with his mommy at dinner time. He was one of our roomies for about a month — pretty much all of his life so far. We wish them the best of luck on getting adjusted to life on the outside. And another of our off-and-on roomies — Jowell — went upstairs to pediatrics until he’s ready for discharge. So all of our baby buddies are gone now. I hope we will be gone soon too.

Curious George (er, um, I mean Colin)

Right now, it seems that the only real thing keeping Colin in the hospital is his eating habits. Since they appear to be planning to send him home on oxygen, as soon as he breaks his dependence on the feeding tube he can come home. The nurses at night seem to have the best luck getting him to take his bottles. With me, in the mornings, he is more interested in looking around than in eating, although I know he’s hungry. 

This desire to see what’s going on also makes burping Colin challenging. He won’t stay leaning forward — after a couple of seconds he sits upright and starts looking around again. And he does this whether I’m holding him in front of me and supporting his head with my hand or putting him against my shoulder to burp. 

In addition to a very strong curious streak, Colin also seems to have a very well-developed sense of time. I try to get to the hospital at roughly the same time every day (around 8:30 in the morning) to change his diaper and feed him. Yesterday, I walked into the nursery at 8:35 and he was crying. As soon as I said good morning, he began to settle down. 

His nurse told me he had just started crying about 2 minutes before I walked in. And this is the third or fourth time he has done this. In fact, the one day I was late (I didn’t make it until 8:55) he was nearly inconsolable by the time I arrived to hold him. 

As one of the current longest-term residents in the unit, Colin also has everyone wrapped around his very little finger. He manages to get held and snuggled by at least a couple of nurses every day when we’re not there. In fact, the other day, his nurse moved her computer over to his crib and held him for a couple of hours while she did her charting because he was fussing. (He LOVES to be held, and usually settles down when someone picks him up.)

Of course, this may pose a challenge when Colin comes home and joins his sister, who also LOVES to be held and can be quite insistent about being picked up. It will be interesting (after we’re through this stage of course) to see how we manage to keep them both happy until they’re better able to settle themselves down. 


We have a meeting with the October doctor this morning, at which we hope to find out his views on what Colin needs to accomplish to come home and whether he is expecting that Colin will be able to wean off the oxygen or not. 

We found out on Monday that Veronica will need to be on the apnea monitor for probably another six weeks — so if we’re able to bring Colin home and he needs to be on oxygen, our house is going to resemble a spider’s web with its tangle of cables and wires. For that reason, I really hope Colin can get off the oxygen before he comes home — but not enough, I think, that I’ll want him to stay in the hospital longer just for that. 


I will try to remember the camera today so I can post some [close to] three month pictures of the babies. I need to record how chubby Colin is starting to look. (He’s up to 5 pounds 5 ounces as of last night.)

Off the high-flow

Colin is off the high-flow oxygen and down to a regular nasal cannula (for now at least — you’ll have to excuse me if I remain a little paranoid about any progress we make on this front, given our past experiences). 

Last night he pulled out his feeding tube and his cannula. He wasn’t having any trouble breathing at the moment, and he was getting a little stinky (the tape they use to hold everything in place also traps milk, formula, spit … you get the picture), so his nurse decided to leave it out for a bit and clean him up. 

Colin continued to do well without the oxygen, so when the doctor came by the nurse called him in and showed him how well Colin was doing without oxygen and asked if she could leave it out and see how long he could go without the extra help. The doctor looked at John (who was there for this whole episode), who shrugged, so the doctor said sure, they could try it.

Colin made it through most of the night without any oxygen, and when John called at 4:30 this morning to check on him the only question was whether he would have to go back on the high-flow or if the doctor would approve the switch to the regular nasal cannula. 

I arrived to feed Colin at 8:00, and was very excited to see the “HF” was no longer next to his name on the board. And sure enough, when I went into the nursery the high-flow equipment was gone. 

Colin also did very well on his feeds all night. The only feeding he needed the tube for was the 6 a.m. feeding, and that was just because the nurse didn’t want him tired when I came to feed him at 9:00. (It didn’t work, he had no interest in eating at 9:00. But we had good success at noon, so no complaint.)

So we’ll see whether he can continue to do well with the lower oxygen intervention. But for now, we are quite pleased.

Three months

Happy three-month birthday my little babies.

Veronica, you’ve been home for a full month now, and I can hardly remember what it was like when you were still in the hospital. You are an interesting blend of a typical two- to three-month old baby — learning to hold up your head and starting to swat at toys during your awake times — and a newborn that needs to be held all the time and who doesn’t have any sort of pattern yet to your awake and asleep times.

Colin, I really had hoped we would have you home by now — but you’re not ready to leave the hospital yet. But you’re growing stronger. You’re starting to get the hang of eating, and now that your lungs have cleared up again, I hope you’ll be able to need less oxygen (or maybe get rid of it all together).

Even though you’re about a month behind your sister in many things, you are a strong little boy. You can “stand up” while we’re holding you for many seconds, and your neck and head control are very good too. And you certainly are a curious little observer when you are awake. No head against Mommy’s chest for you — you want to see what’s going on around you.

I do hope the second “quarter” of your first year is much less traumatic for both of you, and we’re looking forward to having you both together again soon so you can get to know each other again.

All she wants to do is eat

Well, Veronica is a growing girl — she put on 6 ounces last week and is rapidly approaching the 9 pound mark. Unfortunately for Mom (and Colin), that has turned her into a nursing machine. This makes it harder for me to keep up with her demand, let alone also pump enough for Colin. 

I’m back to trying to pump after nearly every nursing session with Veronica to try to build my supply higher, and quite frankly, that gets exhausting. So far we’re managing, but I’m a little worried about once Colin starts taking breast milk at every feeding (if this happens), rather than every other. I’m stockpiling formula coupons, just in case. 

Colin lost a little weight, probably because of the diuretic. I can’t tell if he’s feeling better or not. I guess I’m a little gun shy about thinking he’s doing better since I’ve been wrong so many times recently.

They are trying to wean his oxygen back down — he was at 25% today. Unfortunately he also spent a lot of the morning desatting — which he hasn’t done for a while. I guess his little lungs just aren’t ready to pick up the slack yet. I will say it is rather depressing, though, sitting with him and having the alarms go off repeatedly after thinking we were past this stage. 

He continues to do middling-well with the feeding. Yesterday and today he did pretty good nursing — managing about 15 minutes after he finally settled down. But Colin is clearly the most easily distracted baby of our bunch:

“Ooh, what’s that over Mommy’s shoulder? A white tile … neat. I’m going to study it for a while. … Wait, it’s a whole wall of white tiles. Wow! … What’s this thing in my face? Oh yeah, I’m hungry. I should eat. … Ooh, bright lights in the hall …”

You get the picture. It can take a good 10 minutes to get Colin focused on eating, but once he settles in, he has good technique. So patience is the name of the game, which is hard for me sometimes. But since it doesn’t look like he’s going anywhere in the near future, we seem to have plenty of time to work on our eating skills.

And back again

Well, Colin was doing better for a couple of days, but yesterday started getting very congested again and breathing very heavily. Last night, we got a call from the doctor saying he now isn’t convinced that what Colin has is pneumonia. Rather, he thinks it might be bronchiolitis (a lung infection caused by a virus, similar to the cold virus — it’s fairly innocuous in most people, but can be very serious for babies with underlying lung problems like Colin). 

So last night Colin started receiving nebulizer treatments (10 minutes a shot, 6 times a day) and today the doctor also recommended starting him on steroids (different than the steroids he was on to get him off the ventilator; these are similar to what they would give someone with asthma). Fortunately, these can be administered orally, so they were able remove Colin’s IV. 

I was very happy that we were able to take the IV out, because it was the 6th one he had in 7 days. It was no longer working either — this morning I had to hold Colin’s foot at a particular angle so his last dose of antibiotics would go in — and I was very relieved that we wouldn’t need to poke him again. 

Otherwise, he is still growing — 4 pounds 14 ounces this evening — and when we are able to give him the bottle or nurse him he generally does medium well. Tonight he took 20 ml by bottle for John (out of 40 ml). When he takes a partial feed by bottle, we then give him the rest through his feeding tube.

Veronica has been very fussy lately, and today spent the bulk of the day crying. She needs to be held (all day and all night) to settle down — and that hasn’t been foolproof either. I suspect she’s not feeling well, but I don’t have any real evidence other than the crying. Yesterday she was spitting up a lot, but today she hasn’t done that as much. 

So, I hope whatever is bothering her — whether it’s physical or emotional — passes soon. Otherwise we’re going to be two VERY tired parents tomorrow.

Doing better

Although we’re still waiting for the labs to come back for Colin’s pneumonia (to find out whether it’s bacterial or viral), we have moved ahead with treatment — higher flow on his oxygen and a seven-day course of two antibiotics. And he seems to be responding well.

The biggest fear with the pneumonia (and this will continue to be a fear after he comes home for the first two years) is that he will need to go back on the ventilator. For this reason, no one wants to wait for confirmation before starting the antibiotics. If the labs do come back positive, the doctor can tailor the antibiotics to whatever strain he seems to have. If not, the medications he’s on now provide a broad spectrum coverage that should take care of what ails him.

Because Colin has difficult veins (they’re tiny even for a preemie, and they curve so it’s hard to find one long enough to insert a needle), keeping an IV line open for the full seven days is going to be a challenge. His first IV didn’t even make it 24 hours before it got blocked. And it took three nurses several tries to find a workable vein to replace it. 

Fortunately, I was able to be there and hold Colin’s head and hands while they were working on him, which I think made him feel better. (Not for everyone, I know, but watching them insert an IV doesn’t bother me and I feel much better knowing that Colin had someone there whose sole focus was to snuggle him.) I am hoping and praying that this one lasts for at least a couple of days. 

Because the pneumonia has made Colin’s breathing more labored, we’ve again had to suspend his oral feeds. I am hoping that today he will be back into a more reasonable range with his respiration rate so that we can try again with the bottle and breastfeeding. I don’t want to let that go too long, or I fear we’ll have a hard time getting him used to actually eating (rather than having the food more or less poured into his tummy). 

One discouraging outcome from our meeting with the doctor yesterday was the outlook for taking Colin home. Of course, this pneumonia has eliminated the possibility of bringing him home in September. But now it looks like he may not even be home until late October, and even then may have to come home on oxygen. That's quite an emotional about-face from last week, when we were counting down the days until we had him weaned from the oxygen.

John thinks that as soon as Colin has recovered from the pneumonia, we’ll be able to get him off the oxygen. I’m less optimistic. This is another of those [rare] times where I would love to be proven wrong.

Despite all of these challenges, Colin has continued to gain weight each day. For now, we are keeping him on the alternating feeds of 30 calorie formula and fortified breast milk. If I am able to successfully start nursing him we will have to see if this continues because he will be getting at least one feeding a day that isn't fortified. 

Ultimately, of course, the goal is to get him to a point where he is gaining weight on just breast milk, without any extra calories. But because he is so behind in his growth, thanks to the circumstances of his birth and the two weeks where he didn’t gain or lost weight, I’m in no hurry to pull him off the formula. 

Veronica and I have worked out a short-term system for night nursing that seems to be working for us. After she wakes up for her midnight-ish feeding, I have just been sleeping in the nursing chair for the rest of the night. This is not nearly as uncomfortable as it sounds in print, and it allows me to switch her around for nursing without really waking either of us up. (I tried doing this while in bed, but she isn’t quite ready to nurse in the side lying position — we kept setting her monitor off.)

Of course, we won’t be able to do this after Colin comes home, but for now it provides a way to both feed her and get my sleep.

Or not

Well, so much for a positive arc with Colin. He now has pneumonia. Or at least the doctor is pretty sure he does.

I got to the hospital in time for the 9:00 feeding yesterday morning, hoping to be able to try breastfeeding with Colin again. But when I walked into the nursery, he was stripped down to his diaper with a cool cloth on his head. 

When his nurse checked on him after she came on in the morning, he seemed listless and hot. His temperature was high, but not quite into the serious fever range, but his heart rate was very high (up to 250 when it should be in the 180s) and his breathing was fast and labored. 

But most concerning to her (and to me) was his lack of response to being undressed and changed. If you’ve been following the blog, you know Colin is anything but unresponsive. He’s more the “let you know at the top of his lungs when he’s angry” kind of baby. So she was trying to cool him down (helps with the respiration rate) while waiting for the doctor to come see him.

The doctor raised his oxygen back to 3 liters and we waited to see if that was going to be enough to bring his breathing back down to better levels. It certainly helped, but it didn’t solve the problem so Colin had another chest x-ray yesterday afternoon. The x-ray showed an area in his lower left lobe that looked concerning — possibly pneumonia. 

So the IV is back in and Colin is getting two antibiotics while we wait for the labs to come back. If they don’t show that this is bacterial, he’ll come off the meds in 48 hours. If it is bacterial, he’ll stay on longer. Our goal is to nip it in the bud so he doesn’t have to be intubated (back on the ventilator) again. 

Unfortunately, this is just a taste of what we’ll be facing for the next two years, as Colin’s body works to rebuild his lungs. Even a simple cold for him can quickly turn into pneumonia, meaning more trips to the hospital and x-rays to make sure his lungs are okay. 

Making matters more stressful, Veronica also was not feeling well yesterday. She too was running a little high on her temperature (again, not quite into the full-blown fever range, but higher than normal) and was spitting up almost everything she ate. This, of course, made her very irritable and she needed to be held almost all day (and night). (And made me very worried — what if she had pneumonia too? Or what if it was something worse?)

As a result, I am rather tired and crabby today. I am happy to report that Veronica made it through the night without spitting up (maybe because she and I slept in the chair so I could keep her upright after eating) and seems to be back to her more normal self. Colin spent a quiet night and even gained a big chunk of weight (35 grams), despite everything. (He’s now up to a little more than 4 pounds 7 ounces.)

I guess our care conference today will not be focused on when we can get Colin home after all. Ugh! I’m beginning to get superstitious about writing anything positive or hopeful here — I always seem to be following it up with bad news. (Don’t worry, I won’t really stop. I know there isn’t a cause and effect relationship between the two, even if it sometimes feels like there is.)

Moving right along?

We said goodbye to our long-term nursery roommate yesterday as he prepared to finally go home. It’s a happy/sad time when the babies you’ve gotten to know get to leave the hospital, especially when you’ve spent a lot of time with them. We’re very happy that Connor is ready to be with his mom and dad, but we’ll miss seeing his smiling face every day. Good luck little guy! 

Colin continues to do well — we’re definitely on an optimistic arc right now. He is down to 1.5 liters on the oxygen, and his nurse today was going to ask the doctor about dropping it to 1 liter, because his numbers have remained strong. (His nurse overnight had him at 1 liter all night, but because the orders are for Colin to be at 1.5, his day nurse bumped him back up.) 

At this rate, I guess it’s possible we might be able to get Colin off the oxygen, or at least off the high-flow oxygen pretty quickly. I don’t want to get my hopes up, though. 

Colin continues to do pretty well with the bottle, taking between 10 and 25 ml each time it’s offered. This afternoon I decided it was time to try breastfeeding, but he was sleepy and breathing kind of heavy, so his nurse wanted to wait. 

We compromised with letting him try to latch on while feeding him through his tube. This was further complicated by the fact that his feeding tube is currently through his mouth, rather than his nose. But he managed to latch on a couple of times and get a few sucks in before giving up. Tomorrow morning I'll try for real.

We have a care conference with Colin’s doctor on Tuesday, and we’re hoping to set up a plan for what Colin needs to achieve before he can come how and how we’re going to get there. I hope to come out of that with a better sense of how much longer he is likely to need to be in the hospital, knowing of course, that everything could change.

On the home front, Veronica has entered a stage where she doesn’t want to sleep unless one of us is holding her. That’s okay some of the time, but when we’re trying to do something — like, say, eat dinner — that get’s to be a problem. We’ll have to see how long this lasts. 

Otherwise, she continues to eat much and often. As a result, she is growing like a weed. If the growth chart I checked today is correct, she is at around 5% on the uncorrected chart (not adjusted for her prematurity, but just based on her actual age) and is in the 75th percentile on the adjusted chart. (Colin is still below 5% on the adjusted chart, just in case you were wondering.)

Veronica has much more alert awake time now. She is getting very strong, and likes to lift her head up and look around. One advantage of spending time in the NICU is the babies get to spend a lot of time on their tummies (the 24 hour nursing staff and monitoring makes the threat of SIDS somewhat irrelevant) so their muscles are already starting to develop. 

With the extra alert time, we’ve now brought out the play mat, swing and bouncy seat. She generally ignores the things hanging above her head, but she will occasionally bat at them — especially if Ethan is trying to get her attention with the toys. I can definitely see some progress in her interested in things, and the reaching and paying attention that comes along.

So while we have no idea what’s in store when Colin comes home, I would venture to say that we’re approaching something of a routine with Veronica. Okay, approaching may be too strong a word: we’re sneaking up on a routine, but it’s still around the corner. We’ve caught site of routine, but it remains just out of reach.

Great strides

Today is our 10th wedding anniversary. I don’t think either of us would have predicted that we’d spend this day taking care of a baby, let alone two preemies. But here we are. And while I wouldn’t have chosen the preemie route if given a choice, I wouldn’t trade my life with anyone.

The good news of the day is that Colin is now making great strides toward coming home. He is continuing to grow well, and is up to 4 pounds 2 ounces — finally getting up to more than half Veronica’s weight (she hit 8 pounds yesterday).

Although they’ve had to increase the pressure on his oxygen (back to 2 liters), Colin remains at 21% oxygen — which is room air. As his nurse today put it, he’s not getting oxygen now, he just has a fan blowing it into his nose.

We have a new doctor in charge in the NICU starting today. Because Colin continues to have a high respiration rate (number of breaths per minute) and he still sounds congested, the doctor wants to wait before weaning him lower on the pressure. She is interested in finding out what is causing Colin’s congestion — something John and I really want too.

Her proposal as a first step is to cut back on the volume of Colin’s feedings a little to see if the extra liquid from the milk/formula may be contributing to his congestion (and breathing problems). So we are going to try scaling back and see whether:

1. He’ll continue to gain weight, and 
2. It makes any difference in his breathing.

I hope it will be that easy, but regardless of whether we hit success on the first try, I’m happy to be starting the detective work to root out the cause, rather than simply treating the symptoms. 

Veronica made her first visit back to the hospital since her discharge. No worries, it was a planned appointment, not an emergency. As you may recall, her head ultrasound on the day before her discharge showed a bleed. Today was the follow up ultrasound to make sure the bleed was resolving, not getting worse.

It’s highly unusual for a baby to have a brain bleed this long after delivery, and both Colin and Veronica had bleeds within the past month. In some ways, this troubles me more than if they had the bleeds right away. I asked the doctor if it could be a sign of some other problem, that both of them had these “late in the game” bleeds, but he didn’t have an answer.

At any rate, both babies’ bleeds were minor — level 1 — and unlikely to cause any problems for them down the road. And Veronica’s ultrasound today showed that the bleeding is not getting worse, and likely is resolving already. Colin’s last ultrasound also came back clean. So one less worry, for now at least.

Colin had another eye exam tomorrow to see whether the retinopathy of prematurity (ROP) is progressing (or staying the same or resolving itself). I suppose a reversal at this point is too much to hope for, but I do really hope to hear that his eyes are not getting worse.

I have finally posted new pictures to the album. Of course, both babies have grown a lot in the two weeks since these were taken … maybe I can remember the camera tomorrow to get some new photos.

Out springs hope

It’s funny how life works. I was just getting ready to sit down to write a post about how my hopes that Colin would come home in September seemed to be ill-founded, when John came downstairs with good news. 

Colin has been breathing “heavy” for several days — his breaths move his whole body and head, not just his chest. Although he has been maintaining good levels overall, the doctor decided to raise the oxygen to 3 liters and 30% (from the 2 liters and 28% we had been at). This was a big step backward. 

When John called this morning to check on Colin’s weight (he hit four pounds last night), the nurse said she had noticed a funny sound by Colin’s crib last night. When she investigated, she discovered a leak in his oxygen. She had the respiratory tech come fix it, and afterward was able to drop Colin’s oxygen to 1 liter and 21% (pretty much the lowest setting). 

If Colin is able to maintain his saturation levels at this setting, and the nurse is successful in getting the doctor to write an order making the adjustment official, we will have taken a giant step toward the door. 

Colin also is starting to get an opportunity to take a bottle more often. Unlike Veronica, he rarely forgets to breathe while eating. (She still needs to be reminded periodically while she’s nursing.) His biggest challenge is having the energy to drink enough.

The past three days, I have been able to get him to take 10 ml (out of 30) twice and 5 ml once when I have given him a bottle. John was only able to get him to take 5 ml last night, but his night nurses have been able to get between 20 and 25 ml several times. 

We’re going to try giving Colin fresh (never been refrigerated) milk at noon today. His nurse from last night also is a lactation consultant, and she thinks he will like the taste of the fresh better, and will be more likely to take the whole bottle that way. 

If this works, I may end up spending more time at the hospital around feeding times again, just to help set the pattern for him. I also am planning to try breastfeeding Colin at the end of the week to see how he takes to that.

Veronica continues to do well at home. She has her fussy days and nights, and her good days and nights — just like any newborn. I will be very happy when we no longer have to lug the apnea monitor with us everywhere. It’s nice to be reassured even when we’re busy elsewhere that she is breathing fine, but it certainly makes it harder to move from room to room with her. 

Tomorrow we have an appointment back at the hospital for her to have another head ultrasound. Her ultrasound from the day prior to her discharge showed signs of a brain bleed (a small, level 1 bleed). Because of this, we need to monitor whether it is resolving itself, or getting worse. I, of course, am praying that the bleed appears to be resolved and tomorrow’s appointment will be the end of it. But only time will tell.

Growing and sleeping

Colin is continuing his push toward the four pound mark — yesterday he topped the scales at 3 pounds 10.5 ounces. (He gained again last night, but I don’t remember how much.) He has now graduated to an open crib (as of last night) and has been maintaining his body temperature without any trouble. 

Yesterday’s nurses also were in the “push the bottle” camp, so Colin was given a bottle at three different feedings. He still is only taking a small amount (2 ml for me, 5 ml each for John and his night nurse), but he does well with the amount he takes. If we can get him on a regular schedule of bottle trying, even if it is just twice a day, I believe he’ll pick up the necessary skills and more endurance fairly quickly. 

Unfortunately, yesterday we also got more potentially bad news for Colin. After two months of clean eye exams, the doctor found that Colin’s now has mild ROP (retinopathy of prematurity — a condition in which the blood vessels inside the retina grow too much). Many mild cases will resolve on their own, but ROP can lead to detached retinas and potentially to blindness. 

Right now, Colin is still classified as mild, but because the ROP has developed, he is back to having weekly eye exams to make sure the disease isn’t progressing. If it does progress, he may need to have eye surgery to minimize the damage. 

My personal theory is that Colin has decided that he wants to have the “full” preemie experience, and is trying to work his way through all possible conditions before he comes home. I’ve tried to explain to him that he is still a preemie and a miracle even if he doesn’t get every condition and setback known to affect preemies, but he seems determined to check it out himself. 

On the home front, Veronica has slept for longer stretches (three to four and a half hours) for the last two nights, greatly helping my ability to function. We finally hit on a solution to her not wanting to sleep without being held: We’ve moved her changing table pad into the co-sleeper. And so far it seems to be helping. (The changing table pad is roughly the same shape and width as the crib at the hospital, so I decided to see if it would make her feel more “at home.”)

So both babies are growing like weeds (sort of), and working on catching up in size to other babies born at the same time. They’re still 10 days short of their due date, so developmentally are like or behind newborns. But they’re getting more mature every day, and we may start hitting some of the fun stages before we know it. Yeah!

Planning our next move

Other than being completely discombobulated by the lack of sleep and many rapid shifts in our “normal” routine (hello back to school), I think we’re all doing pretty well. 

Veronica seems to be enjoying the freedom being at home brings — especially the ability to nurse every two hours. She had her first pediatrician appointment on Tuesday, and has been seen by the home nurses twice since her discharge. All seems to be going well with her, and she has put on quite a bit of weight even in the week since coming home.

Colin is doing relatively well. The diuretic seems to have helped. He’s still congested, but not as bad as earlier in the week. As long as we keep on top of suctioning his mouth and nose periodically, it seems manageable. 

We have noticed, however, a somewhat troubling pattern: he seems to desat when he is getting to the end of a feeding (about 10 ml left, typically) and immediately after. He also has been getting very red in the face and grimacing a lot. We think (as do several of the nurses) that he may have reflux. The doctor wants to monitor it for a couple of days before starting any medication, so we’ll see what he thinks again tomorrow. 

With all the changes the past two weeks have brought, we have become rather passive with Colin’s care. This has been complicated by the current doctor schedule, which has a new doc in charge every two weeks, rather than once a month. Tonight John and I decided it’s time to start pushing to get a little more aggressive so we can get Colin on track to come home.

So next week we will set up a care conference with the doctor and try to get a plan worked out for eating (we’re doing a very informal occasional bottle now) and for weaning the oxygen. We’re particularly interested in hearing about the pros and cons of switching him off the high-flow oxygen onto the low-flow (my name for it) system. One of Colin’s roomies has made the switch this week, and it seems to be helping him, and while every baby is different, it can’t hurt to ask. 

Water, water everywhere

Colin, and his long-term roommate Conner, have switched personalities — or at least that’s what the nurses think. Colin has become the content and quiet baby, and Conner has become the crabby one. (Of course, it could have something to do with Conner being a month older and really ready to spend his time somewhere besides his crib.) It’s nice to have Colin being classified as the “easy” baby for a change.

Of course, with Colin, nothing is really easy. He has continued to have problems with desatting, generally with his blood oxygen levels only dropping a little and coming right back up. But yesterday he had a very bad drop — we had to bump up his oxygen to the maximum levels and still needed to bag him to get him back to where he should be. 

His nurse had requested chest x-rays for Colin yesterday morning, because he was sounding more congested. She and I then stalked the doctor to get him to read the x-rays as soon as possible so we could start on whatever course of treatment Colin needed. The doctor confirmed what we could both hear: Colin has too much fluid in his lungs again, and that is making him work too hard to breathe. 

We don’t know what is causing the fluid build-up. It could be moisture from the oxygen being pushed into his lungs. (They add water to the oxygen to maintain the proper humidity levels, but sometimes you can see it pouring from the tube into his nose.) It could be an infection (they sent cultures to the lab again to check). Or it could be that the effects of the steroids are reversing. 

The doctor ordered a three-day course of diuretics to try to clear out the extra fluid. Colin has responded to this well in the past, and if the cause of the fluid build-up is benign it should take care of the problem for him. If that doesn’t work, we’ll move on to the next possibility and so on until we figure it out.

The doctor said he thought the problem likely wasn’t too serious because Colin has gained so much weight so quickly. (He was up to 2 pounds 6 ounces two days ago.) If he were fighting a serious complication, he probably wouldn’t have been able to maintain this level and speed of growth. But, of course, we won’t know for certain until we see what works. 

Veronica continues to adjust to life on the outside. She seems to like the freedom of not being on a pre-set schedule — but still is working on settling into her own rhythm. Right now, she is having a little bit of a day/night reversal and is sleeping longer periods during the day and waking more often (every 2 hours last night) at night. 

We’re hoping we all settle into a routine for our “new normal” soon. And that soon after we get this routine down, we hope we’ll have to change it all again to welcome Colin home. We’ll see.