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.

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.