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.