What’s sleep?

“You have now entered the sleep deprivation zone.” That’s what the narrator would be saying if my life were a television show. And like all new parents, we have. Our lack of sleep is complicated by an apnea monitor that liked to go off repeatedly on the first night — fortunately all for no real reason.

Veronica is doing well at home, in some ways just like a typical newborn and in some ways more like the two-month-old baby she is. She is eating very well, every two to four hours, and gained weight on her first day home (according to the visiting nurse’s scale on Friday). She still sleeps most of her non-eating time, but is starting to have longer alert periods.

Ethan continues to be both excited and disappointed with his big brother experience. As expected, he is upset about how much time and attention she demands. But he is also very protective of her, and likes to read to her and play with her when she’s awake.

Back in the hospital, Colin continues to progress. He now weighs 3 pounds 6 ounces — finally passing Veronica’s birth weight. He looks a lot like Ethan did as a baby now, and all the nurses are now commenting on his “chubby” cheeks. He has started (unofficially) taking a bottle occasionally. He has good technique with the bottle, pausing on his own to breathe regularly and spilling very little. So far, he has been managing about 10 ml of his 27 ml feeding when we give him the bottle.

Colin’s nurse yesterday was going to try to get the doctor to write an order to make the bottle feeding official. At that point, we’ll have an appointment with the speech therapist to evaluate his technique and put together a feeding plan.

Colin still is having desatting problems, keeping us from attempting to further wean him off the oxygen. We have been looking for possible causes:

• Is the water from the oxygen tube (necessary to maintain the proper humidity level) causing his oxygen levels to drop when it collects and runs into his nose? 
• Is his feeding tube in properly, or is it rubbing somewhere and causing the desats? 
• Could the effects of the steroids be reversing? (Please no.)
• Are the antibiotics still in his system affecting his oxygen levels? 

And while we try to figure out why, we continue to hope that as he grows, Colin’s body will develop the resources to maintain his oxygen levels without help so we can bring him home.

We’ll try to get the homecoming pictures and pictures of Colin with chubby cheeks posted later today. If we can squeeze in some computer time.

Two long/short months

Happy two-month birthday babies. It seems like only yesterday and yet an eternity ago that you were born. You’ve both come a long way from your beginnings. 

Veronica, you are coming home from the hospital today. I’m so happy that you are ready to begin your life here on the outside, but a little sad that you still have to be on the monitor — delaying for a while longer your opportunity to have a “normal” baby experience.

Colin, I’m sad that you aren’t coming home with us too, but glad you are somewhere that you are getting such good care. I’m very excited that you finally got to try your first bottle last night. And you did so well learning how to swallow for the first time. I am happy you have nurses who are willing to push the envelope a little for you. 

I know one day we’ll look back on your early days and be amazed at how far you’ve both come — I am amazed already at your progress. I love you both, and can’t wait to get to know you both even better.

Alarming

When Veronica comes home tomorrow, she will be on an apnea monitor. Apnea is when the baby (or any of us, really) goes more than 20 seconds without breathing. Veronica does this periodically when she is eating. During her pneumogram (the 12-hour test I couldn’t remember the name of), she had at least one apnea episode, which is why we’ll have to keep her on the monitor. 

Today, I had to get trained on how to use the monitor. (John had to stay with Ethan because we didn’t get enough advanced notice to find someone to watch him.) It’s relatively simple to operate — at least when it’s not going off at 2:00 in the morning for no apparent reason. And Rick, the technician who trained me on it, assured me that what other parents said was true: it will go off for no apparent reason quite often.

While hearing an alarm designed to tell you if your baby is not breathing or her heart isn’t beating properly can be disturbing enough, this puppy is loud enough to wake the dead. I mean, really, if Veronica’s heart was beating properly before the alarm goes off, the noise this thing makes will be enough to make it start beating too fast when it scares her half to death. (Or, maybe she won’t notice because she’s had alarms going off all her life, but it will scare John and I half to death.)

The unit is portable (in a “carry a fairly heavy bag over your shoulder” kind of way), but I’m not sure I’m going to be taking her anywhere while she’s on this. I can just imagine what would happen if her alarm started sounding while we were in the middle of shopping. People would freak out. 

We hope she won’t need to be on the monitor for more than a month. The box records everything it measures, and a technician comes out once a month to download the information and send it to either her pediatrician (if she has no episodes) or the neonatologists (if she has an episode) for them to evaluate. 

We also will be trained tomorrow in how to give Veronica her drugs (caffeine and a multivitamin only). John is picking up the prescriptions tonight so we have them ready for the discharge tomorrow. I’m not too worried about that, since I’m fairly certain the meds will just go in her bottle like they do now. 

In addition to our training, a paramedic will be coming over (probably on Monday) to check out the monitor in its new setting — our house — and make sure we are operating it properly. We also will be having a home visit by a nurse for the next three weeks to check on Veronica’s progress. This is in addition to her pediatrician appointments and any Early Intervention services she may qualify (speech or physical/occupational therapy). I believe they also have a follow-up clinic at the hospital for preemies as well. 

And Veronica is going to be our easy baby. Once Colin gets home … ugh.

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.