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.