It’s official

Veronica is coming home on Thursday — 62 days after she was born, two and a half weeks before her due date, and on her 2 month birthday. She’ll be on an apnea monitor (to track her breathing and heart rate) for a month, and will be back on the caffeine for two months (lucky girl). Tomorrow we will learn how to use the monitor and get a refresher on infant CPR, then we’ll have our discharge conference on Thursday. 

I’m working on my list of questions today, so I can leave it with the doctor ahead of time to make sure we get everything answered. Of course, with Colin still in the hospital it’s going to be quite easy to ask questions if we have any down the road. But I would prefer to get as much worked out up front as possible. 

I must admit, the thought of bringing Veronica home seems somewhat surreal. When I try to picture myself with a baby (outside the nursery at the hospital), nothing comes to mind. We’ve been in this limbo for so long that it just seems normal. I suspect that I’ll still need some time to get used to the idea that we really do have a baby (well, two actually) even after she’s home. But I am looking forward to getting on with that adjustment.

I am a little sad that we’re separating Colin and Veronica again, after finally getting them back together again. But with luck, Colin will be joining us here before too long as well (fingers crossed).

I will try to continue making the regular posts as we adjust to our next new “normal” this week. But if I miss a few days, it probably just means I’m too tired to remember how to type, not that anything is going wrong.

Getting ready for homecoming

Well, we still don’t know yet if tomorrow will be the big day, as was suggested yesterday. But we’re gearing up for Veronica’s homecoming. You would think that 8 weeks after their birth we’d be ready for having a baby in the house. If so, you’d think wrong. 

Oh, we’ve made some progress toward getting ready, but the honest-to-goodness ready-for-a-new-baby stuff … we just weren’t there. So last night, after John told us at his 7:00 call that Veronica might be coming home tomorrow, Ethan and I sprang into action. We rearranged the master bedroom (because the babies will be with us for at least the next three months), washed the diapers (we’re doing cloth again), cleaned out the co-sleeper (how does all that stuff keep accumulating there?) and generally made sure we had everything where it needed to be. 

This evening we still have to do a little more rearranging in the bedroom, and we have to get the diapers off the line in the basement and bring them upstairs. But I feel like we’re almost ready to bring her home. 

When I left at 1:00 this afternoon, we were waiting for the technician to come and start the 12-hour test Veronica needs to have before discharge. Once that is done, she needs to do her car seat test (to make sure she can sit in the seat without having breathing or heart rate troubles). If she passes both tests, she can come home tomorrow. 

If she has any brady (heart rate drops) or apnea (forgetting to breathe) episodes while doing the 12-hour test, she still may be able to come home. She’ll just need to be on a monitor and possibly medication. Or, they may decide she isn’t quite ready to leave and we’ll have to wait a little while longer. 

Regardless, we’re nearly there with her. 

For the Colin update, we’re happy to announce that he has finally doubled his birth weight. Last night, he weighed in at a whopping 2 pounds 14.5 ounces. While he’s still too small to be on the growth chart, at least he is growing again. 

We are still waiting to see if the antibiotics took care of the problem that was causing him to start desatting again last week. Today he had his last dose, and he has been more stable. If he stays stable, we may be able to start weaning his oxygen again. I really hope so. 

As he has gotten older (and bigger), Colin has become a much happier baby. Now, when he gets upset, it’s more like a normal baby upset. He cries before feeding time because he’s hungry, and he absolutely hates having a dirty diaper. 

He also now provides me with some gratifying Mom moments. Twice today while I was in the nursery he got very fussy and the nurse wasn’t able to settle him down. Each time, she handed Colin to me and as soon as he was in my arms, he started to settle down. He also has more alert and happy moments, which are fun to see. 

If Veronica comes home, Colin will miss his lap time with Veronica moments, I’m sure. But he’ll also enjoy the undivided attention of whichever parent is spending time in the nursery — something he won’t get much of again after he comes home. 

So close …

Yesterday Veronica came within inches (well, milliliters really) of getting her feeding tube removed. She needs to take all eight feeds by mouth (either breastfeeding or by bottle) over 24 hours. She managed seven and a half of her eight feeds, but couldn’t quite stay awake for her last one. So close.

Today, however, we able to get her switched to more of an “on demand” feeding schedule, which should help her out greatly. She has done very well with her feeds, and the doctor has given the okay to let her have less on some feeds, as long as she takes at least 55 ml (out of the 60 she should be having) every other feeding. That should prove much easier for her, as will being able to feed her when she wakes up and is hungry, rather than having to stick to the every three hours schedule.

So far today, she has not needed the tube for any feedings — in fact, the nurse has removed it — and they are starting to get her ready to come home. In fact, she may be here as early as Tuesday (although John and I think that may be a little too optimistic). Tonight, they will give her the car seat test — she needs to be able to sit in the car seat for 2 hours without having any breathing or heart rate problems before she can come home.

The doctor also has ordered her off all her medication (really just the Prevacid for reflux) and has stopped fortifying her bottles to prepare her for a 12-hour test (we can never remember what it’s called) they’ll likely perform on Monday or Tuesday. They insert a monitor (like her feeding tube) to near her stomach and plug it in to a laptop. They’ll then record everything from her heart and respiration rates to whether she is still having reflux problems.

If she has any bradys or apnea episodes, they may decide she isn’t ready to come home. Or, they may decide she can come home either on medication or with a monitor. This is the part we’re not sure she’ll pass because she still tends to have bradys while she is eating (because she forgets to breathe). But if it’s only happening while she eats, maybe they’ll let her come home on a monitor. We’ll just have to wait and see.

One thing going in her favor — the NICU is getting very crowded again, and they could use her bed for another baby.

Colin also is getting closer to his next milestone — being able to try oral feedings. He has continued to gain weight, despite the infection, and is up to 2 pounds 12 ounces now. Tomorrow is his last day on the antibiotics, so he should be able to get his IV out. We should be ready to switch his feedings from the pump (over a half hour) to the gravity feedings (through his feeding tube). If he does well with those and continues to gain weight, we should then be able to try nursing and a bottle.

Unfortunately, we don’t seem to be any closer to getting Colin off the oxygen. He continues to desat periodically, although not as bad as the day they decided to start him on antibiotics, and certainly not as often. I am happy the episodes are getting better, but John is very worried that the effects of the steroids are wearing off and that we’re sliding backwards on lung function for Colin.

I certainly hope that isn’t the case, and I don’t know why that doesn’t have me more worried right now, because it would be a huge blow to our progress with our little guy. I don’t know if I’m just getting some kind of positive vibe about it, or if I’m just too tired to be able to contemplate the possibility. Regardless, right now I am choosing to acknowledge the possibility while also refusing to give it any credibility.

Guarded optimism

And now for some good news … at our care conference (meeting with the doctor) this afternoon, the doctor said he expects Veronica to be coming home within the next two weeks. (That’s what I’ve been saying too.) So while it will suddenly become much more complicated to have one baby in the hospital and one at home, we’ll finally have one baby at home. 

Veronica pulled her feeding tube out (again) this morning. Because her face was a little irritated from the tape, her nurse and I decided to leave it out and see how long she could go today eating by mouth. She did three nursing or nursing/bottle combination feedings in a row, but we put the tube back in before the 3:00 feeding this afternoon, just in case. Three in a row is her record, so that’s very exciting. 

Because her tube was out, they were able to do her hearing screen this morning as well. She passed in both ears, so one less thing to worry about. She has what may be her last eye exam (for now) tomorrow. So far neither she nor Colin have shown any signs of ROP (retinopathy of prematurity — a potentially serious eye disorder preemies are prone toward), thank goodness. 

Also in the good news front, Colin gained an ounce last night, despite the infection and having to get the IV inserted. He is now up to a whopping 2 pounds 9 ounces. It would be fantastic if he can continue to grow throughout this little setback. And he might, since he doesn’t seem to be getting as worked up about things these days. When he gets upset it is more of a normal baby upset, not a super Colin-sized upset like he used to have. 

They also have been able to keep Colin’s oxygen levels at only slightly higher levels than he was at before yesterday. He is still having some incidents where is oxygen saturation levels drop, but not as many as yesterday. So either the antibiotic is working remarkably quickly, or something else was causing the problem. But for the moment, we’ll take whatever encouragement we can. 

Keep up the good work little guy.

New pics

Here are a couple of new pictures of Colin and Veronica. I’ve also put a couple from Ethan’s most recent visit in the photo album.

Colin wearing the hat I knit him when I realized
they would be born early.

Veronica resting in her hospital crib.

Five steps backward

I thought I was going to be able to make a happy post today, because Colin gained even more weight last night and has reached a new high at 2 pounds 8 ounces. But apparently that wasn’t to be. As has been the case all along with Colin, we take a few steps forward, then a giant step back.

Last night Colin had to have another transfusion. His hemoglobin and hematocrit (red blood cell) levels had been decreasing for several days, thanks to the daily blood draws. But the doctor had been waiting to see if Colin’s body would start to produce enough new cells on his own to avoid the transfusion. Last night they decided he couldn’t, and went ahead with the transfusion. 

The transfusions make poor Colin very cranky, and we had to work hard to get him settled down last night. John had the magic touch, and after a while Colin fell asleep and had a relatively quiet night. 

When I came in this morning, the nurse told me that right before 7:00 Colin had started to get worked up. His heart rate had started to jump inexplicably a couple of days ago while he was just sleeping (rather than while he was worked up, which is typical). Now he was desatting (his blood oxygen levels were dropping) frequently. He hasn’t had problems maintaining his saturation levels since we took him off the ventilator, so this was rather troubling. 

At one point, while I was holding him, his saturation levels dropped into the 40s (they should be between 85 and 100), and we couldn’t get him back up until we increased the pressure on his oxygen. Since we were really hoping to be able to start weaning him off the oxygen soon, this was a big step back.

Tonight, when John went to the hospital for his visit, we found out why Colin has suddenly started having these problems: the doctors are pretty sure he has either a kidney or urinary tract infection. Unfortunately, they weren’t able to get a urine sample to find out for sure which, because they couldn’t find a catheter small enough to use for Colin. 

They’ve sent cultures off to the lab for testing, but we won’t get the results for three days. Rather than wait for confirmation, the doctor started Colin on antibiotics this afternoon. With luck, his infection will respond quickly to the antibiotics and clear up. But this pretty much kills our hopes of getting him off the oxygen soon, and will probably interfere with his weight gaining as well. It’s hard to muster the energy to fight an infection when you only weigh 2.5 pounds.

Bitty bit better

Over the past four days, Colin has finally started putting on some weight. It’s only been a bitty bit (about half an ounce a day on average), but at least it is movement in the right direction. The nurse hadn’t weighed Colin yet last night when we left (she was waiting until after 11:00 when he would get his bath), but we’re hopeful that he is continuing on his gaining trend. 

Veronica continues to do well on her feeding, and is now taking closer to 3/4 of her feeds orally, at least in part. Yesterday I started trying to nurse her twice a day. In the morning she only managed half a feeding before falling asleep. Last night, at her 9:00 feeding, however, Veronica took her entire feeding nursing. 

We judge whether she has gotten enough milk by how much time she spends nursing — 20 minutes seems to be a full feeding, so 10 minutes would likely mean she only got about half her normal 56 ml amount. When she nurses less than 20 minutes, we end up giving her the difference (28 ml yesterday morning) through her feeding tube. 

Now that Colin is gaining weight, we are going to talk to the doctor about finishing weaning him off the oxygen. The sooner we get him completely weaned the better his chances of not suffering neurological problems. 

Statistically, babies who are off oxygen by 36 weeks (gestational age) have a much lower incidence of delays than babies who still need support after 36 weeks. We’ll be at 36 weeks on Friday. Of course, it’s not like someone will flip a switch in Colin’s brain on Friday and say, “Oops, you waited too long. Now you’re going to have problems.” But the sooner we can get him breathing on his own, the better off he’ll be. 

I want to thank everyone again for all of your support, both emotional and physical, of our family since the twins were born. We really feel blessed to have so many people — both those we know and those we haven’t met — caring about our babies (and us). I do believe it has made a difference for us, and for them. 

And I promise I’ll get those new pictures posted later today. Promise. I just have to figure out where John saved them.

More bad news for Colin

Poor Colin really seems to have the deck stacked against him at this early stage in life. Just when we think we have things under control for him, something else crops up to cause him problems. Now that his lungs seem to be functioning well (thanks to the steroid treatments), he has stopped growing. In addition, we just found out that his brain scan two weeks ago showed he had a brain bleed (technically an intraventricular hemorrhage). 

It is only a Grade 1 hemorrhage, the kind least likely to cause any permanent damage, but it is one more thing to be concerned about. Fortunately, his scan last week showed that it hadn't worsened and the doctors think it will probably resolve itself by the time he hits full term (40 weeks). But I still worry about the possibility of it making life harder for my poor baby.

For some reason, neither John nor I was told about the bleed until this week, when one of Colin’s night nurses noticed it in his records and asked if we had known. Because we hadn’t been told, his nurse the next day tracked down the doctor and called us so we could call back and ask about the results. (Apparently she technically couldn’t initiate the conversation, so she called when the doctor was sitting next to her and made John call back right away to ask about what it meant. She is a wonderful nurse!)

It’s very a-typical of our experience that we didn’t get the results of the scan. The doctors and nurses are very good at keeping us apprised of the developments and results for the babies. I think that we were all so focused on getting Colin off the ventilator that everything else sort of faded into the background. We’ve been reminded by this that we need to keep track of when the various tests are run, however, and follow up to make sure everything is okay. 

Colin’s lack of weight gain continues to be a concern. He started two days ago on the high-calorie formula for every other feed. The nurse said it typically takes a few days to see any weight gain from the change (unlike when I eat an extra cookie and see the unfortunate results the next day), so we’re keeping our fingers crossed that it will do the trick. 

Veronica has been pretty successfully taking every other feeding by mouth — at least partially and quite often fully. It still saps her energy and she nearly always sleeps through the next feeding. But I feel like we may be getting closer to getting her home. 

In some ways, that almost makes me sad. Not that I don’t want her here with us, but she and Colin are finally able to be together for the first time since their birth, and when she comes home they will be separated again. They seem to enjoy snuggling together, and it really calms them both down when we hold them at the same time. I will be sad to have to keep them apart again until Colin finishes growing and can join us at home as well.

I’ll post some new pictures tomorrow.

No gain baby

Just when you feel like your worries are going away, along comes something new. We’ve been very focused on Colin’s lungs and getting him off the ventilator (and eventually off the oxygen all together). I’m happy to report that he is still doing well with this. 

Unfortunately, our hopes that he would start to gain weight once he was off the vent and into a nursery haven’t panned out. While he is up from the lowest point he dropped to, he has not regained everything he lost let alone made progress toward getting bigger. The last three days, in fact, he has weighed exactly the same (approximately 2 pounds 4 ounces). So we’re now starting to worry about this. 

His doctor is concerned too, and is looking into options to try and jump start Colin’s growth again. One possibility is to give him high-calorie formula every other feeding. While I would prefer to have Colin be able to have an all-breastmilk diet, I certainly am in favor of anything we can do to help him grow. And unfortunately, they just can’t boost the calorie and fat content of the breastmilk to a high enough level.

Come on Colin, grow. Grow!

On the bright side, Colin is doing much better in other ways now that he is in the nursery. He doesn’t get as angry or agitated, and when he does get upset, he is much easier to calm back down. He is getting a lot more sleep, which will help his development, and now has some periods where he is alert and quiet. All good things.

Veronica is doing well too. She is a little congested and sneezing a lot (her first cold, I guess), which sometimes interferes with her taking the bottle or nursing. But we’ve been managing around it. Yesterday she nursed for a feeding and a half, but only took about 15 ml by bottle when John fed her. But we’ll get there before too long, I’m sure. She is still about two weeks ahead of the game in terms of when they normally start the babies on a bottle or nursing.

Having both babies in the same nursery is starting to give me a taste of what is to come when they come home. Twice this morning while I was holding Veronica, I had to also try to calm Colin down because he was unhappy. Eventually I put Veronica back in her crib so I could hold Colin, only to have to do the reverse and move over to soothe her back to sleep. Let’s hope that practice makes perfect (or at least modestly competent).

Still going strong

Colin appears to be making the adjustment to his life in the nursery. Now that the nurses are keeping him swaddled, he seems happier: he doesn’t have as many crabby tantrums, and even his fussy times are not as bad. This morning, he spent at least half an hour alert and happy, just looking around and watching me. 

Colin also enjoys being held more often. Without his ventilator to maneuver and with the swaddling holding him close, the transition from bed to arms is much quicker so he doesn’t get as worked up. (He still gets very crabby if we wake him up when we’re putting him back in his bed, though.)

Probably as a result of getting settled in and not fighting as much, Colin has finally started to regain the weight he lost. At his peak, he was up to 2 pounds 8 ounces. He weighed 2 pounds 3 ounces this morning, so he still has a way to go to get back to his peak. His main job right now is to grow, grow, grow. And at least he’s headed in the right direction again. 

John and I have both been able to hold Colin and Veronica together now — and have no pictures because we keep leaving the camera at home. It’s very strange to do this, in part because we have never been able to interact with both babies at once, and in part because it emphasizes how very different they are in size. Veronica’s 6+ pounds dwarfs little Colin’s 2+ and makes him seem very tiny (which he is). Looking at them, you would never guess they were twins. 

Veronica is doing very well with the nursing. She is latching on very well, and has taken her whole feeding by nursing three of the five days we’ve tried. (The other two days she fell asleep very quickly and had to get her feeding through her tube.) I’m only attempting once a day right now — just to get her used to the idea. Next week I’ll try for twice a day and see how it goes from there. 

She also is improving on her ability to tolerate the bottle feedings. Last night she took the bottle two feedings in a row and drank nearly all of her milk before wearing out. This is encouraging, because she needs to be able to take all her feedings either by bottle or nursing for at least 24 hours before they will let her come home. 

Happy boy today

Yesterday, as is typical for him, Colin had a very agitated day. He seems to have a day or two where he seems content, then he’ll rage for a few days. Unfortunately, he burns so many calories raging that we’re having a hard time getting him to gain weight. 

Last night, after John came home from his “calming down Colin” session, I mean visit, we wondered whether Colin might be happier swaddled, even though he’s still in the heated isolette. The same thought apparently occurred to his nurse last night, because when I arrived at the hospital this morning, Colin was swaddled and happily sucking away on his pacifier.

We are hoping to get both babies together in our laps soon, but today, whenever Veronica was awake, Colin was sleeping. When Colin woke up, Veronica was asleep. So we’ll have to keep working on that.

Anyway, new photos in the album (click the Photo tab at the top of the page here). Enjoy.

Together again

This evening, Colin graduated from the NICU and into the nursery. They had to do some baby shuffling, but he and Veronica are together again (in Nursery 4) for the first time since they were born. I have no idea if they remember each other from in the womb, and am anxious to see what happens the first time it works out that one of us will be able to hold them both at the same time. 

This will making visiting both easier and harder. Easier because we no longer have to go back and forth between the NICU and the nursery (not a long distance, but still not as easy as having them in the same room). Harder because we will now know if Colin is getting upset while we’re holding Veronica, or if Veronica wakes up while we’re spending time with Colin. It will be good practice for the rest of our lives. 

Ethan is very excited because he will now be able to visit both his siblings, and may even be able to touch Colin. Unfortunately, Colin is still very easily overstimulated, so it may be a while before he can tolerate much interaction from Ethan (who is, after all, still only a six-year-old). But this will be the closest Ethan has been able to get to him since the twins were born. 

Today was also a big day for Veronica, who had a very successful first breastfeeding session — she nursed for half an hour without any problems, and was able to take enough that she didn’t need a follow-up bottle or tube feeding. She slept through the second attempt, but I wasn’t expecting her to be able to manage two feedings in a row. 

As the good news keeps coming and we make further progress toward getting the twins home, Ethan and I have been working on getting everything ready for them. Today we organized all of their newborn clothes and cleaned out everything that has been piled up in their co-sleeper. Ethan and John already have dusted off the car seats and the stroller. We have the diapers mostly set — I still need to wash the new cloth ones, and we’ll have to exchange some of the preemie sized ones for newborns now that Veronica is so big. 

I do think we may at least be organized before they are discharged. Whether we’ll be ready is a different story. But who can ever really be ready for two new babies, especially ones who were born so early? We’ll just have to do what parents have been doing throughout the ages — we’ll wing it.

Going steady

Well, it’s been three days now, and Colin is still off the ventilator. And he’s doing very well without it. His oxygen level has been weaned down to 23% (the air you and I breathe is 21% oxygen, for comparison), and he has not been desatting much if at all. He still is sensitive to the touch quite often, which makes him crabby whenever anyone tries to change his diaper or do anything to him. But his angry fits don’t seem to be quite as bad as when he was on the ventilator, leading me to believe he feels better without it. 

Now we just need to get the boy to gain some weight. All his fighting is burning off too many calories (the equivalent of running a marathon for his little body) and he actually lost weight in the first two days off the vent. They continue to increase the amount of milk he gets, and have started fortifying the milk with extra calories. He spent most of today sleeping, so I hope at tonight’s weigh-in that he will be back up to 2.5 pounds at least. 

Veronica continues to gain proficiency with the bottle. At her two feedings during the day today, she took nearly all 50 ml (leaving behind 6 ml at one feeding and 9 ml at the other). Taking that much by bottle does wear her out, and she tends to sleep through the next feeding. But her technique is good, and she is having fewer desats while eating — meaning she is remembering to breathe. 

Veronica has been steadily gaining weight too. She is now up to a whopping 5 pounds 15 ounces, and is starting to look like a normal newborn. It’s hard to believe that six weeks ago she only weighed 2.5 pounds, and that by all rights she shouldn’t even be born yet.

And he’s off

At approximately 4:30 yesterday afternoon, Colin was finally able to come off the ventilator and onto the high-flow oxygen. I was able to hold him while the nurse took out the ventilator tube and taped on the cannula. That part went smoothly, but it took Colin much longer than they had hoped to bring his saturation levels back up. 

They had to raise the rate and amount of oxygen quite high to get him stabilized initially. The doctor said to keep him on the high-flow and just take it hour by hour. I was quite relieved when John came home last night and Colin was still holding his own without the ventilator, and even more so when we called this morning and he was still doing fine. While we have no guarantees, it now seems much more likely that he’ll be able to stay off the ventilator for good. 

Now we just need him to put all his energy into growing. He is hovering around 1100 grams for weight, and he needs to get up to at least 1600 to graduate into one of the nurseries (and be near his sister). He has been doing well in terms of tolerating his feeding, but has been spending a lot of energy fighting the respirator. My hope is, now that the tube is gone, that he will feel less need to fight (physically, at least) and can settle down and grow. 

Veronica also had a momentous day yesterday — she drank her entire feeding by bottle. Her nurse was so excited that she unhooked Veronica from her monitors and brought her (and the empty bottle) down to Colin’s bedside to show me. 

Slowly, but surely, we seem to be making progress toward getting our little babies ready to be “born” into the outside world. They’re such a part of our lives that it is hard to remember that under normal circumstances, they would still be inside me, and we would not have met them yet.

 

Temper, temper

Last night, Colin threw the mother of all temper tantrums. And it proved how far he has come in the past few days (thanks, we’re sure, to the steroid treatment) because through the entire tantrum, he stayed stable. 

John and I switched visiting schedules yesterday — he took the morning visit and I went over in the evening. This was nice because both babies tend to be awake and alert after the evening shift changes. The nurses do a full assessment of the babies at 7:30, and this wakes them up. 

I took advantage of this, after giving Veronica her bottle for the evening shift, by holding Colin. This past week, we have faced the opposite problem with holding Colin: he has been too peaceful to disturb. Since he was awake and moving around already, I pounced and asked if I could hold him.

Colin settled in quickly and soon got very comfortable and fell asleep. After an hour, it was time for me to put him back in his bed. We had to wake him up to do this, and this triggered the tantrum. He raged and cried and tried to pull his respirator tube out. And I stood there and held his hands and his head and tried to talk him down. It took more than half an hour, but I finally succeeded in calming him down enough that he fell asleep. I hope he stayed that way.

Colin is also now off the IV and taking all his nutrition from the breast milk. He is up to 5 ml every hour, without any fortification. The doctor wants to continue to move very slowly with the feeding, since we’ve run into problems in the past when we’ve made a jump. His nurse also was able to lower his ventilator settings again yesterday.

So for both babies, and their parents and big brother, this has been a pretty good weekend so far.  

The eyes [don’t] have it

… ROP that is. ROP stands for retinopathy of prematurity — an eye disease that affects premature babies, especially those with very low birth weight. With ROP, the blood vessels in the retina overgrow and can cause scarring and possibly a detached retina, which can cause anything from mild vision problems to blindness. Prolonged exposure to oxygen seems to make babies more susceptible to ROP.

Both Colin and Veronica had eye exams yesterday (it was Veronica’s second exam), and neither one is showing any signs of ROP. We’re quite relieved, especially with Colin’s exam, since his continued need for oxygen support and his very low birth weight puts him at a higher risk. Colin gets his next exam in two weeks; Veronica in three. 

Veronica also had her appointment with the speech therapists. No, she’s not a prodigy who is starting to talk already. The speech therapists also work with swallowing issues, and are involved in creating a plan for introducing the bottle with preemies. 

Veronica was very sleepy from her eye exam, but she rallied to the cause and managed to rouse herself to take enough of the bottle for them to make an assessment of her technique. And apparently her technique is very good, especially for one so young (only 33 weeks gestational age yesterday). She paces herself very well, and even took some breaks so she could breathe. 

So now we’re following a schedule of one bottle per shift, when Veronica seems ready. We will let her drink until she starts showing signs of distress (trouble breathing, rising heart rate, making a squeaking noise, starting to fall asleep). At that point, she gets the rest of the feedings through her tube. 

Colin also had a good day yesterday. His ventilator settings have been coming down steadily over the past two days (pressure was at 23 last night, oxygen at 30), and he has been desaturating far less often and less severely when he does (only into the upper 70s, rather than down to the 40s). 

Life as a NICU parent is all about numbers. You try not to get caught up in it … but that’s how you measure everything. So Colin’s numbers give us something tangible to focus on. When his pressure is down to 10, he should be ready to come off the ventilator. As long as he continues to progress and doesn’t hit any bumps, that could be as early as next week. 

All in all, a good way to end the week.

Crazy day, but not for us

Yesterday was a crazy day at the NICU, but fortunately we were observers rather than participants in the chaos. While I was visiting Colin in the morning, in the span of about an hour and a half, they admitted four babies to the NICU — all while being short one nurse, who had to go home sick. 

The noise and confusion that accompanies admitting so many babies did upset Colin some, and I found that he was too sensitive for me to even touch. So I spent my visit sitting next to his bed and watching him.

Things finally settled down after the 7:00 break (in the evening), and they were able to start Colin on the steroids again. So we are hoping and praying that they work well and quickly, and that he is also able to continue tolerating the milk. We want him off the ventilator and over three pounds as quickly as possible. (He weighed 2 pounds 7.5 ounces last night.)

Veronica had a very boring day (which is good at this stage). She had an appointment with the speech therapist yesterday afternoon, and will have another today. In addition to working on speech development, speech therapists also evaluate a baby’s ability to suck. These appointments are to help us develop a plan and schedule for her bottle feeding. (Right now we’re following a random, when it seems right, plan.)

We have our first meeting with the new doctor in charge today, and will be interested to see how his opinion and plan of action differs from last month’s doctor. (They talk daily, but each doctor has his own personality, so we are sure they will have some differences in their approaches as well.) Other than that, I am hoping for a very boring Friday.

Our Big Drinker

We have been introducing Veronica to the bottle this week. It’s a little on the early side for her to be able to master the art of sucking and swallowing while breathing, but she has been showing signs of readiness … so we’ve tried. After two days, I think we have found the right formula for success: only trying every other feeding (and letting her sleep through the alternate feeds), using a slow-flow nipple on the bottle and tilting her a bit to the side. Using this technique, she took 30 ml (out of 45) from the nurse yesterday at noon, 15 ml from John last night, and 30 ml from me at noon today. Way to go Veronica!

Veronica’s brady episodes seem to be decreasing as well — both in duration and intensity. So she is working on her last two big hurdles before she is ready to come home. (It likely will still take several weeks to be ready, but I feel like we’re into our final approach with her.)


Colin also is doing well with his feeds and seems to be digesting everything properly this time. As a result, each day the doctor is increasing the amount he gets. His total daily intake is still less than what Veronica eats in one feeding, but if he can continue do well, he’ll catch up in no time. (Okay, it will take some time, but he will catch up.)


Colin is on his second day of stability — thank goodness. If he continues to remain stable through today and tonight, the doctor is planning to start him on the steroids again tomorrow. Even without the steroid treatment, they have been able to continue to lower his ventilator settings, so I am keeping my fingers (and toes) crossed that the treatment will be enough to get him over the top of the hill and off the ventilator.

Better day

Today has been a little more stable, thank goodness. Colin has been tolerating the feeds, so they are going to start increasing the amount tonight. He is still getting only a tiny little bit of milk, but we don’t want to go too fast for fear of developing another gas bubble. It sounds like they may be planning to stop the antibiotics tonight or tomorrow, but John wasn’t able to find out if we’ll be able to start the steroids again soon. 

Colin had a very bad episode last night, during which his saturation levels dropped very low, and the nurses couldn’t bring him back up. They had to “bag” him (manually pump oxygen into his lungs) to get him breathing properly again. Because he was having so much trouble, the doctor decided to take out his ventilator tube (it turned out to be clogged with mucus at the end, where the suction doesn’t reach) and then intubate him again. 

So he is now very sensitive again to everything, and we are back to not being able to hold him. He was fairly calm while I was there this morning and his saturation levels remained good, but he had another episode this afternoon.  


Veronica is doing very well off the oxygen. (I may not have mentioned this development, but they took her off completely on Saturday.) She seems to occasionally hold her breath, but is otherwise breathing fine. The blood transfusion also seems to have helped with the bradys, because she is not having as many now. 


This afternoon, she had great success with the bottle. Previously we had been able to get her to suck maybe three or four times — she mainly licked the nipple, and looked very surprised and a little scared when the milk came out. That didn’t happen with the pacifier, or her thumb or the blanket. Today at her 3:00 feeding, however, she drank 30 ml from the bottle. 

Right now, she tends to be awake for about every other feeding. Obviously, getting her to drink from the bottle doesn’t work well while she is sleeping, so the nurse is only trying when Veronica seems alert. She is still very young to be mastering the bottle feeding, so we will continue to take baby steps on this as well. But I am happy that she seems to be progressing well.

Whiplash

I’ve often heard people describe the preemie journey as a roller coaster. Our last few days with Colin have been more like bungee jumping: You’re hurtling along in one direction, and just when you start to get adjusted, BAM, you’ve reached the end of the cord and are suddenly being catapulted in the other direction. And while I’m not a big fan of roller coasters, bungee jumping is at the bottom of my list of things to try.

Since my last entry on Friday morning, we were told that Colin’s lung appeared to have collapsed again and he was too sick to take off the vibrating ventilator (sending us hurtling down). A couple of hours later, after re-reviewing his chest x-rays, the doctor decided the lung wasn’t collapsed — just hazy — and the switch wouldn’t hurt anything. An hour later he was back on the regular ventilator (which made him happy, and sent us zooming back up).

Friday we also learned Colin had another gas bubble in his stomach and we have had to stop his feedings again. Later, the night doctor reviewed Colin’s evening x-rays and said it looked like his intestinal walls were thickening and he may have an infection (zoom, back down). They started him on antibiotics again, but told John we could continue the steroids.

Saturday morning, we have to stop the steroids because Colin is on the antibiotics. His stomach/intestines are looking worse in the x-rays, so still no food. He is doing okay on the ventilator, however, so we won’t have to switch him back.

By Sunday, Colin was miserable. I don’t know if it was pain from the gas bubble moving through, or from the ventilator or what, but he was crying every two or three minutes all afternoon and evening. And there was nothing we could do but sit there and hold his little hand while he squeezed with all his might. It broke my heart to see him like that — I have never felt so helpless and frustrated (reaching the bottom of the bungee cord now).

This morning, when I arrived, Colin was sleeping peacefully. No red face, no crying, no writhing in pain. Just sleeping. (BAM, bungee cord sends us shooting upward again.) His nurse told me she hadn’t even tried to change his diaper yet because he was so peaceful she didn’t want to disturb him. I didn’t want to either, so I just sat by his side and watched him sleep for an hour (then changed his diaper when he woke up).

His x-rays today are much better, so he was supposed to be able to start on milk again tonight. I’m a little nervous about starting the feeds again (although I know if we don’t keep trying we’ll never make any progress) because every time we do, he ends up with another gas bubble and in so much pain. But maybe the third time’s the charm for Colin, and he’ll be able to tolerate it this time around. I certainly hope so.

John is still at the NICU for his evening visit now, but I hope he’ll come home with good news rather than news that Colin has had another setback.

Veronica, on the other hand, has had a relatively uneventful week. She continues to have the bradys, but not as many or as long as they were last week. She is getting her feedings (now up to 45 ml every three hours) over a half hour, and the nurse yesterday decided to try getting her started on the bottle.

Veronica wasn't sure what to make of the bottle. She likes the taste of the milk, and laps it up like a kitten. But she’s more interested in licking than sucking right now. Her nurse today was in the “better to introduce the bottle later” camp, so she didn’t get a bottle today (which is fine, since we’re just starting to introduce the idea). But I’m sure we’ll be trying it again soon.

Veronica also got to see her big brother today, as he was able to make his second sibling visit. He brought both babies a card to celebrate their one-month birthdays (today) and was even able to hold Veronica (with a little assistance from Mom).