Follow-Ups and Downturns

Thursday was an up-and-down and all around tiring day. We started with Matthew's 1:20 PM appointment with the nephrologist (kidney doctor) at UNC's pediatric outpatient clinic. This was a scheduled follow-up to see how the medication is working to control Matthew's high blood pressure. The appointment was scheduled by the folks up at the NICU before Matt was discharged. But the pediatric clinic didn't have us in the system so we had to wait until almost 3 to see the doctor. All ended well - his BP looks good on the current medication and there is nothing else to do until our next follow-up in 3 months (unless, of course, we contact them with any concerns or issues.).

Next we had to bring Matt to the eye doctor for his final check up for ROP (retinopathy of prematurity, an abnormal growth of blood vessels in the baby's eye). It came as a surprise to us that we had to take a hospital shuttle bus to the ophthalmologist because the eye care center is located in a different part of the campus. The exam itself takes 3 or 4 minutes, but it requires a bunch of eye drops and about 30 minutes of waiting for the eye drops to work. Matthew's eyes are fine, as far as ROP goes. Preemies have a greater than normal chance of having crossed-eyes or nearsightedness. We'll have to bring him to the eye doctor periodically so they can catch any problems early.

By the time we returned to the main hospital it was nearly 6 PM. Poor little Matthew had not eaten since around 12:30. But he didn't make a peep. He either loves sleeping in his car seat so much that he ignores hunger pangs, or he is still a little to young to fully express his hunger. Either way, dad and mom learned some valuable lessons:

1. Make sure to bring the nipples to the bottles. Babies can't drink straight from the bottle or through a straw.


2. Bring enough baby food (milk) to last 2 or 3 times longer than what you had planned.

The day's stress started while we were in the car driving to the hospital. The resident called to inform us that James had been throwing up and his belly was distended. He was crying a lot and visibly uncomfortable. The x-ray showed air in his bowels (not in the lining, just in the bowels as if he had a very bad case of gas). They started him on antibiotics to prevent infection and they took a blood culture to see if he has a blood infection. We won't know the results for 48 hours or if the results show an infection, whichever comes first. (If there is an infection, it's fairly easily treated with antibiotics.) They do not think this is a return of NEC (necrotizing enterocolitis). The surgeons don't think there is a physical obstruction (during surgery, they were able to examine all of his intestines and didn't find anything else, and they think it would be too soon for any new obstructions to have developed). And it may be that the rapid increase in the size of his feedings since yesterday morning was just too much for him to handle all at once (although the doctor seemed to think it was something more than this). In any event, we're back in a period of waiting and hoping for the best.

Bionic Baby

The speech therapist came today to work with James while we were there. (It was the same person who worked with Matthew -- she's great! We've learned a lot from her.) He did better than I expected, perhaps because my expectations were so low after the nurse's report last night. James has some of the same issues that Matthew did with maintaining focus (what they call state organization). He also is swallowing several times with one mouthful of milk, which makes him work harder to breathe (because every time you swallow, you close off your windpipe.) These are typical issues that they see with babies who have been on ventilators and not feeding. The therapist was slow and patient with him, and he drank about 5 ml and then started having trouble -- but it's a start!

They're going to use a special bottle called Bionix to get him eased into the process. This bottle has a special nipple where they can control the flow of milk, starting with very small amounts and working up to the kind of flow a regular nipple would give. (The therapist seemed to think he might not necessarily need it, but it can't hurt.)

He'll still be getting whatever he doesn't drink from the bottle through a feeding tube. They're advancing the volume of his feeds by 10 ml every 12 hours, assuming that he tolerates the higher amounts. So, right now he's at 19 ml every 12 hours, then he'll go up to 29, and so on, until he gets up to 50-something ml ("full feeds"). That schedule seems kind of fast to me, but they were very conservative at the beginning, and I guess that since everything seems to be going well that they aim to get him up to full feeds (which means off the IV fluids!) as quickly as possible.

They were also looking into ordering supplies for his ostomy for us and finding a home health care nurse that can help check on it, so that sounds like they're planning to get him home before his next surgery. At this point, the timing really depends on his feeding (so we're talking at least a week, and I doubt it will be less than two weeks).

[Other posts for today below.]

Life on the Outside

Drive-through lady: "How old is the baby?"
Mike: "Uh, a couple of days. Well, he's a preemie, so it's hard to tell."
(Me: "Just say two months!")


Pediatrician: "Has he been having wet diapers?"
Mike: "Well, we haven't been weighing them..."
[In the NICU they weigh the diapers for babies who are on IV fluids to make sure they have the right balance between what's going in and what's coming out.]

Now We are Six

Six pounds, that is -- Matthew's weight at his pediatrician appointment this morning was 6 lbs, 1 oz. Jamesie is still ahead at 6 lbs, 8 oz. (You can feel the difference when you pick the two of them up!)

Big Boy Bed for James

Jamesie got promoted to a big boy bed today! (There was a sign on Mattie's crib yesterday that said "Save for little brother", but apparently they didn't -- Mattie's crib was blue, and James's is mostly white with little rainbow colored specks.) They also changed his name -- he's now a Barr like his brother.

Mattie's old place is filled already -- the entire pod is full all the sudden.

They kept the amount of James's feedings the same (6 ml every three hours), but they're now giving it to him all at once (what they call bolus feeding, when it's given over a half hour) instead of a continuous flow. They also tried to feed him by bottle this evening, before we arrived. Apparently it didn't go too well; he doesn't get yet that he's supposed to swallow the milk, and tried to spit it out. So they're most likely going to have the speech therapy folks come in and evaluate him and make a plan for helping him.

First Night

Well, we all survived Mattie's first night home! He was very good, though he doesn't like diaper changes any better at home than he did at the hospital.

Right now taking care of one baby is a two person job! We pretty much know what to do, but we're not at all efficient about it. It might take us a few days to get into a routine, especially with the bottles and the medicines. (For some of his meals, he's still getting breastmilk supplemented with special formula for extra calories, and he gets his blood pressure meds twice a day in a small amount of milk.)

The top picture is "Nursery, v1.5" -- we scooted the crib over next to the bed to basically make a co-sleeper. This arrangement was very good for me being able to make sure Mattie was okay all night, but not necessarily the best for the most restful night of sleep. I'm sure at some point I'll be willing to have him a little further away, but not just yet! (He's in his carseat on the floor next to me right now.)

Stanley reacted to Matthew about as we expected (the same way he's reacted to Daniel, Charlotte, and other babies) -- he was quite enthusiastic and wanted to lick him. But he was very good when we told him no, he couldn't kiss the baby. Stanley doesn't like it when Matthew cries (and who can blame him?) -- he tucks his tail down and hides under the bed.

Jamesie is doing well (and was looking especially cute yesterday!) The "little" brother is still the "big" brother in terms of weight -- and now they seem to think it's mostly real weight rather than retained fluid. They're making a plan to try to move him up to full feeds over the course of a week or so. The doctor was also talking about trying to give him a bottle within the next few days -- very exciting!! It's possible that the fact that he's a little late in starting with feeding by mouth will cause some extra trouble for him getting started, but we'll see -- for now we're optimistic.

A Massive Day of Firsts

There were many firsts today. A few for mom and dad, but many firsts for Matthew. First time in his new crib at home...first time with Stanley (and vice-versa)...

his first feeding at home....first time in a car seat...first time in the living room at home....first take out meal from Tarheel Takeout

He's Home

...so I can only type with one hand. Very happy!!

One Day More

Everything is on track for Matthew to come home tomorrow. We're so excited! Our lives have changed a lot in the last two months, but being in charge of a baby full time is going to be a whole new world (just like regular parents!) I suspect the blog updates will become somewhat shorter and/or less frequent what with the massive quantity of feedings, diaper changes, sleepless nights, etc. coming our way.

It's going to be really hard to leave James behind in the hospital, though. Of course we don't have any choice -- he needs to be there now -- but it still feels wrong. It was a little hard for me to leave the hospital without them the first time after they were born. (That time was made harder by the fact that as I was sitting in the wheelchair waiting for Mike to come around with the car, they parked a woman who WAS going home with her baby right next to me, and of course everyone walked by smiling at her and congratulating her. Thanks, guys, nice to rub it in.) But this feels worse somehow, maybe because 1) it's not fair that his brother gets to go home now and he doesn't, and 2) we're leaving him all by himself (which of course we're not; all his wonderful nurses are still there taking care of him).

As a practical matter, though, I think we're going to be grateful to get to learn all about life with a newborn with one baby first before the trial by fire of two! Or, as Mike put it, we'll make all our mistakes with Matthew and then when James comes home it will be smooth sailing. :)

James is doing well -- he's off his cannula and back on room air (yay, James!) and he's also pooping, which is great. The surgeons are happy with his progress, and if things continue to go well, the doctors may increase the amount of his feedings tomorrow. He also seems to be feeling better. I held him today and last night, and he makes faces and fusses off and on like he has gas (which he probably does), but doesn't seem to be uncomfortable otherwise.

More Family

James and Matthew love their (Great) Aunt Ann!

Matthew has us trained already. When Grandma put him back down in his crib when we were ready to leave, he started fussing a little, and she picked him right back up. :)

And Mike's car seat installation got the seal of approval from the fire station today, so we're good to go with that. (It's not clear to me why the firemen get the job of verifying car seat safety, but whatever works!)

James continues to do well with his food. He had a little bit of spit up, but they think it was because the feeding tube was tickling his mouth, so they moved the tube to his nose instead.

No Baby Today

Matthew didn't come home with us Friday because we felt he needed to stop losing weight and he need a couple of days of steady blood pressure. This morning's report showed that he gained weight and had a couple of good blood pressure readings. If he keeps this up then he ought to be coming home on Monday. Yay!

Edited to add: They started Jamesie on a small amount of food (2 ml an hour continuous feeding) in the middle of the night last night, and so far, so good!

A Little Longer

The doctors left it up to us whether to take Mattie home today or have him stay in the hospital just a little longer. For the reasons we mentioned in our previous post, we felt that today was just a bit too early. They took him off one of his three blood pressure meds today, and if he does fine without it (as they expect), it'll at least be nice to only be giving him two meds (and vitamins) at home. Also, he's been losing a little bit of weight rather than gaining the last few days, and we'd like to see that he's doing well enough with his feeding to be gaining before he comes home. I think another couple of days will allow us to just celebrate his homecoming when it arrives, rather than having these lingering concerns.

We were upset this morning because Mattie had been back on a monitor after his vaccination (which he received late last night), and the doctor told them to take it off. That didn't make sense to us, because although the risk of Matthew having apnea after the vaccine is very low, the cost of monitoring is essentially nothing (it's just a little probe taped on his foot, and the computer setup is already right there by his bed), and the cost of him having an apnea that goes unnoticed is very very bad. So we went into the hospital earlier than we had planned to talk to them about this.

The doctor's reading of the research literature is that for babies like Matthew who have not had apnea immediately before the vaccine, there isn't an increased risk afterwards. He actually gave us a research article reporting a clinical trial that showed (nonsignificantly) lower risk of apnea after vaccination -- but, that article cited five or six previous studies (I'm assuming not randomized trials) that reported increased risk, and even in that article, both the study and control groups had about 16-20% of the babies who had apnea after vaccination (but I didn't see any analyses separating out babies who had been having apnea before versus those who had outgrown it). He said we could look at the literature ourselves if we wanted (and we have indeed done that for some of the other issues the babies have faced), but that didn't seem the most helpful suggestion given that the increased risk is just for 24-28 hours, so by the time we did the research, it would be a moot point!

From the doctor's perspective, the risks of monitoring are that false alarms would encourage unnecessary interventions (and the alarms do indeed go off when there's not a real problem; for instance, bearing down when they're working on a bowel movement causes a temporary drop in breathing, etc., but that's not something that needs any intervention), and that in a broader sense, having a lot of "false" alarms raises the chance that the staff would miss a real alarm. I can certainly understand those concerns.

I'm pretty sure he was right that Matthew was not at risk for apnea, and I'm confident that none of our doctors would intentionally put a baby at risk (and this doctor is extremely experienced and very well-respected), but I did not want to take the chance that he was wrong (or that Matthew was an exception to the general rule) when preventing a problem was so easy to do. So I asked them to please humor us and do the monitoring just for a short period, and they agreed.

James (top picture, with Mike) is continuing his recovery. He'd had a tube that was suctioning the secretions out of his belly (a replogle), and things looked good (that is, a lower volume of secretions means that things are starting to move through the digestive system), so they took that out. (I'm sure he's much more comfortable without it!) He also doesn't have quite as many IVs in as he did a couple of days ago. They tried taking away his cannula to see if he was ready to go back to room air, and it seemed like he wasn't quite there yet, so they put it back on after about an hour. He's still on the lowest cannula setting (so, he just needs a little breathing help, but not much.) They're planning on starting to feed him soon, probably tomorrow. Keep your fingers crossed -- hopefully this time will be the charm!

Grandma Green is back for a visit -- Matthew enjoyed hanging out with her (bottom picture)! She would have been happy to bring him home right then. :)

The Nursery, v1

The nursery has come a long way in a few days. We like the way it came out, but we'll probably change things up before the boys notice anything. The paint job was started way back in March by Grandpa and Grandma Barr, and completed by Mike in June. The brightly colored changing table was passed on to us from one of Melanie's colleagues -- who also gave us the crib. Grandma Green suggested the primary colors and sanded the piece; grandma Barr primed it and Mike painted it. Between the crib and changing table is a Diaper Genie given to us by another of Melanie's colleagues. (We sure hope it contains the smell of those dirty diapers.) The quilted bed cover was made by Grandma Barr a couple of years ago -- we can't think of a better use for it! The 'Matthew' and 'James' wall hangings were made by Aunt Nora and Grandma Green. Thanks! The runner along the top of the wall is actually a crib bumper that we found at a giant baby-stuff sale back January or February. We weren't sure if it would go with anything but we had a hunch we'd find a way to use it. We just purchased the fuzzy white rug yesterday; it replaces a 46 year-old Bolivian (i.e., from Bolivia) white wool rug that disintegrated after spending time in college dorms, apartments, and grad school basement floors. The oak dresser in the foreground is functional, but may be moved to the office after we've move the bed to the guest room downstairs (to be replaced in the nursery by a love seat that reclines or folds out into a small bed -- these are things that will be the topic of 'Nursery, v2').

Good Evening

James (top picture) is off the respirator and back on his cannula. They are still doing a bit of a balancing act to give him enough pain medication that he's not uncomfortable, but not so much that it affects his breathing. He was doing well during our visit this evening. He seemed quite comfy on his belly, so I guess his incision isn't bothering him too much.

They're still talking about Mattie coming home tomorrow, but to us it seems like there's still a list of things that were supposed to happen before discharge that haven't happened yet. He hasn't had his hearing test or gotten his two-month vaccinations, for instance. And we found out tonight that a possible side effect of one of the vaccinations for preemies is a temporary recurrence of apnea episodes for 24-48 hours after the vaccine, so it seems like a much better idea for them to do it while he's in the hospital (and can go back on his monitors) than to have us do it outpatient! (I feel that me trying to staying awake for 48 hours to make sure he's still breathing would not exactly do wonders for my mental health.) He's also still on three blood pressure meds, and we thought they were going to try to do some weaning to see if he actually needed all of them. So, while we're very excited to get him home, we feel that tomorrow may be rushing things a little bit.

Good morning

It is 3 AM and we just finished Matthew's 2nd feeding and diaper change of the night. We are having a sleepover at Matt's place -- the sleep room in the NICU. This is a chance for the parents and doctors to see well the parents can feed the baby and generally survive a full night alone with the baby. Well, not exactly alone. We are only 25 feet from Matthew's staff in Pod F. So far so good. But, man!, this boy sure is a non-stop gurgly, bleeting, mewling, and grunting machine. Not to mention really stinky. His last diaper smelled like a cowpie. And the 2 hours of noxious gas emissions preceding the poopiness stunk up our little room something terrible. We are going to have to consider installing a commercial grade exhaust system in the nursery at home.

Pass

Mattie passed his car seat test last night. (The test just involves sitting in the car seat with a respiration/oxygen saturation monitor on, to make sure that the sitting position of the seat doesn't cause any problems for the baby. Sometimes preemies have lower muscle tone and the car seat position can cause them to slump over and have problems with their airways.) One more thing checked off the "ready to come home" list!

The plan is to take James off the respirator tomorrow. He's still getting fentenyl for pain control, but he was moving around and more awake today. And he actually had a poop through his ostomy, which is kind of freaky to see at first (but I imagine we'll get used to it very quickly). The poop is a good sign, though, that maybe the bowels are getting back in order.

On Demand

Not only have they taken away Mattie's feeding tube, they've taken away his schedule, too! In the NICU, they do "care times" every three hours -- diaper changes, feeding, temperature checks, meds, etc. But now Mattie gets to feed "on demand." He gets fed when he acts like he wants to eat, but with no more than 4 hours between meals, and at each feeding he is allowed to eat as much as he can in 30 minutes. (They don't want to encourage snacking.) They have a minimum level of food that he needs to eat every 12 hours (right now that is 150 ml).

We fed him today when we were there, and he did pretty well. But the side effect of having no feeding tube is that if he doesn't finish a meal, the leftovers get thrown away. It was rather painful to see my hard-earned milk tossed in the trash can!

The evening report was that Jamesie finally had a nice big pee (see, isn't this a refreshing change from the poop stories?) Hopefully that's a sign that he's starting to get rid of his extra fluid.

Moving Target

The morning report from the nurse is that the attending doctor thinks Mattie might come home on Friday. Wow! But this doesn't seem quite consistent with what we've been hearing about what needs to happen before he's discharged. They're still trying to calibrate his blood pressure medicine, which means first getting him on the right doses and meds to keep the pressures at the right levels, and then seeing if they can wean down at all from those doses so that he's on the minimum amount needed. And since the effects of the medicines aren't always immediate, our impression is that the process will take a few days -- and they don't really want us to have to go through that process at home. Also, if they decide to do any more tests (and they're in fact doing a more detailed kidney imaging study on Thursday), it's a whole lot easier to have that taken care of while he's in the hospital rather than trying to arrange it as an outpatient.

The doc has taken Mattie's feeding tube away, which surprised us because he hasn't yet gone a full day when he's taken all of his feedings by bottle -- they've still been having to give him some of it by tube. (Of course, he can always have another tube put in if he ends up needing it -- it would only take a nurse a minute or two to do it -- but hopefully he'll rise to the occasion.) And it seems like the usual procedure is also to wean off the calorie supplements in the formula, and to make sure he's still gaining enough weight (or not losing weight) while doing all of his feeding by mouth. So that also seems like it would take a few days.

In any case, we'll try to be prepared for Friday, but next week may be more realistic. Very exciting!

Jamesie is doing well. He's still on the ventilator so that they can give him pain medicine, but he seemed comfortable when we were there last night, and the nurse said he was resting well today. He's retaining a ton of fluid, though. He's rocking the scales at an astounding 6 lbs, 7 oz. (By comparison, Mattie is around 5 lbs, 12 oz.) Hopefully he'll be able to get rid of some of the fluid over the next few days -- it can't feel good to be that puffy, and that also makes it harder for him to breathe.

Surgery Day -- some pictures

James continues to recover from his surgery. In the meantime, mommy and daddy fed Matthew and got to dress him up in a cute little outfit.

James was wide awake before they wheeled him into the OR.

Surgery OK; less colon

James' surgery was a success. They found 2 strictures, the one they already knew about (a few inches above his rectum) and another a little farther upstream. The doctors removed the segment of colon between these two strictures, roughly 6 or 7 centimeters in length (that's approximately 2.5 inches). The doctor said that the removal of this length of colon shouldn't cause any eating or digestion problems as he gets older. For the next 6-8 weeks James will be pooping out of hole in his abdomen -- he has an ostomy. This will give the bowel time to heal before the two ends are reconnected in his next (and hopefully, final) visit to the operating room.

We'll post some more information and photos later this afternoon or evening. Thanks for all your thoughts and prayers.

Night Before

The babies got to hang out together again today. I'm not sure if they really notice each other yet, but they certainly seemed to be sleeping well next to each other. (In the picture, James is the one with his hat half-way on.) Mattie is back in his own bed tonight, because James has to get a couple of pre-surgery sponge baths to reduce the risk of infection.

Jamesie got another blood transfusion today, so he's nice and pink and presumably in good shape for surgery tomorrow. The surgeon who will be operating on him is the head of pediatric surgery, and one of his specialities is GI disease -- so James will be in extra-good hands. (We've met him before on rounds, and we like him a lot.)

Like last time, James is scheduled for mid-morning. They estimate that the surgery will take an hour or two. But it's not uncommon for things to run late, so don't worry if we don't update until afternoon or evening.

Jamesie's Spa Day

We'd noticed that recently James had been having some dry skin on his head that was making his hair stick to his scalp (cradle cap), so when we arrived this afternoon, we were delighted to see that his nurse had put mineral oil on his head and was brushing out the dry skin. (He mostly didn't seem to mind, but he protested once or twice.) He looks much better now!

Then he got to have a nice warm bath and baby massage. (The blue thing on his arm is a glove taped over his IV so it doesn't get wet.) When he was all wrapped up in his wet blankets, he looked like a wee Roman senator in his toga! (He's retaining some fluid again, and when that happens, he always seems to retain about half of it in his cheeks.)

Mike held him while Mattie got his bath, and then (after Mattie's lunch), the nurse put them both in James's bed together. So cute! (In the bottom picture, James is the one higher up, on the left.) Even though Mattie is allowed to come with us to visit after he goes home, he won't be allowed to go in James's crib once he's been discharged. Right now, since they're in the same environment, there's not much chance of them passing germs back and forth, but once Mattie is out in the world, that changes. And they probably won't put them together much (if at all) while James is recovering from surgery, so it's nice that they can do it now! (James is on the schedule for Monday morning surgery.)

Tentative Plans

It looks like James will be having his surgery on Monday. We're not totally sure of the scheduling yet, though (so there's some chance it may be Tuesday instead). Poor baby! Hopefully this will be the final step to getting his feeding on track. The time for recovery from the surgery depends on what they find. If it's just the one narrow area that needs to be removed, then it sounds like recovery is relatively quick; if they have to remove other portions of the bowel, it could be longer. (During the surgery, they do what's called "running the bowel" or "running the gut" -- physically feeling the entire intestine to identify any problem areas. Despite the name, I don't expect this to become an Olympic sport any time soon.)

Mattie is doing well; he took his entire bottle a couple of times today and also did well with breastfeeding. Since he is not hooked up to any wires, he also gets picked up and held more these days. (He's sort of turning into a newborn. Preemies don't cry much unless you're doing something to them that they don't like, but Mattie's starting to sometimes fuss a little at other times as well, and holding seems to calm him down.)

They recommend that parents spend the night in one of the NICU sleep rooms with the baby before the baby goes home, to practice all the night feedings and get a little more comfortable with taking full care of the baby (but with help just down the hall). They've got a room reserved for us one night next week. We don't know exactly when Mattie might be discharged, because it mostly depends on how well he does with his feeding. But our nurse recommended that the overnight be not right before discharge, since they like you to be rested for the first night at home with the baby! (Hmm, getting that one last night of sleep before the year or so of sleep deprivation?)

They also got the results back from a urine test that they did a week or so ago to rule out some possible causes of Matthew's high blood pressure, and fortunately, the test did indeed rule out those causes. This was a huge relief for me, because the earlier discussion of the test boiled down to "your baby might have cancer or another kind of adrenal tumor, but it's a really low probability so you shouldn't worry about it." Mike was actually able to take them at their word and didn't worry about it, but I got all short of breath and teary-eyed whenever I thought about it. They could tell us all they wanted that they didn't think that was what it was, but to me, the fact that they were testing for it suggested that it was a possibility. But now that's off the table, so I'm a happier camper.

What!? A New Name?

During this morning's phone call the nurse told us that there had been a name change for the babies. Melanie said that we were rather fond of 'James' and 'Matthew'. No no, said the nurse, the hospital was changing the last names from 'Green' to 'Barr' (their legal name, as indicated by the birth certificate). Except that James' names was still going to be 'Green' in the UNC hospital's system since he is going to require surgery and possibly a blood transfusion. They can't change the patient's name without necessitating a new blood test and opening a new pack of donor blood, neither of which is desirable. So, we may encounter some confusion when we call and ask for the 'Green twins' since they may no longer appear as twins in the receptionists' material.

Why, Yes

...we did call the hospital at least four times last night to make sure Matthew was still breathing. (He was.) As with almost everything, Mike was sure everything was fine, but he humored me.

We're also now the proud owners of carseats and a stroller. Hopefully we picked a seat that Mattie will like!

Without a Net

When we went in this morning, we found that they'd taken off all of Matthew's monitors (no pulse oximeter any more). Wow! It makes me a little nervous, but I'm sure they know what they're doing. The philosophy of the current attending doctor is that if babies are ready to go home, they should be off the monitors, which also helps the parents get used to not having that backup. (The photo is of his monitor; the green line at the bottom is output from a pulse oximeter, measuring oxygen saturation in the blood, but that's for another baby, probably James -- since the nurses take care of two babies at once, the monitors usually have the other baby's saturations at the bottom.)

It looks like the new betablocker medicine is working to control Matthew's blood pressure better, which is good. They're going to see whether he needs both that and the analapril or whether the beta blocker alone is enough. We were there for the nephrology (kidney doctor) rounds on him, and they don't seem worried that the cause is anything more serious than the possible tiny blood clots in the kidney (which just go away on their own).

Mike fed Matthew while the speech therapist was there; Mike did a great job and the therapist said that Matthew was doing much better than even a couple of days ago. It sometimes takes him a little while to get going, but once he gets in a rhythm, he does well. Yay, Matthew!

We were there for regular morning rounds as well, and the attending doctor had pretty much the same reaction to the surgery plan for James that we did -- that delaying for a week or more was unacceptable. So, they do think that surgery is necessary despite the fact that James is pooping, but the doctor is going to consult with another surgeon to make a definite plan. (We had been assigned to one surgeon because he did James's previous surgery and they like to have continuity of care, but now it looks like we'll get a different one who can do the procedure sooner -- which is absolutely fine with us.) We'll know more tomorrow, but we are feeling better than we did last night about how this is being handled.

Bleh

We were starting to think that the plan for James was a secret plan, but then the surgeon finally called us around 8 PM. He does think that surgery is needed, but that it's not urgent because whatever blockage is there isn't a complete blockage. Usually I'm delighted that something isn't urgent, but then he also mentioned that the surgery likely wouldn't be scheduled until the end of next week (or even into the following week). We'll talk to the doctors more tomorrow or Friday (a cell phone call on a bad connection wasn't the best time for an extended conversation), but it sounds like the reason for the delay is a matter of scheduling rather than medical reasons, and it's really upsetting to think that James's hospital stay is going to be extended for at least a week because of this. It's also upsetting because he's been on fluids for a really long time, and if they don't feed him before the surgery (which seems like the most likely course of action), that's not great either. The fact of him needing surgery is stressful, but we're really eager to just get this problem solved so that he can move on and get healthy.

They're giving Matthew an additional high blood pressure medicine, since the analapril isn't consistently controlling his pressure. They also did another echocardiogram to rule out a possible heart-related cause (arterial something-or-other), and his heart looked fine. He's been doing pretty well with his feedings; it seems like on average he's taking about half of his milk through the bottle (at the times when he's awake for them -- they're still doing some purely tube feedings as well).

Our visit today was relatively short, but we did get in some snuggle time with them. :)

[Photo is Mike with James.]

No Plan Yet

Still no plan for James, but he had another little small/smear poop this morning, so they have that information to add to their decision-making. The doctor actually saw this one, which I think is helpful. I wouldn't be completely surprised if the plan is "let's do another GI study." We found out yesterday that the previous study showed only three inches of bowel (that is, the contrast material only made it through the bottom three inches of his bowel, whereas the whole bowel is really long, maybe 10-20 feet), and the doctor mentioned again that it would be really unusual to have a stricture that low (of course, James hasn't specialized in "usual", but the doctor's working hypothesis was that it was some other kind of obstruction, like a twisted intestine). Combined with our nurse's mention that the procedure seemed a little different than previous times she'd seen it, and the fact that we're only a couple of weeks out from the time when all the new interns come in to the hospital, I think there's also at least a possibility that the study wasn't done correctly. But we should know more about the plan later today, so probably I shouldn't be spending too much time speculating about these things!

The big change for Matthew this morning is that they've discontinued two of his monitors. They're taking off the respiration and heart monitors, and leaving just the pulse oximeter. ("What? How will we know if he's tachypneic?") That's exciting, but there goes our security blanket! (The output from the monitors is tracked in almost real-time on screens by the babies, and alarms go off if their heart rate, breathing rate, or blood oxygen saturation drops below certain levels.) The nurses have been telling us all along to "watch the baby, not the monitor" (to tell if he's breathing, if his color looks good, etc.), and now we won't have much choice. :)

Two Months

It's the boys' two month birthday today -- can you believe it? (They're also the ones who have been in Pod F the longest. Yep, we're the old-timers! Another baby who was there when we arrived is still in the NICU, but moved to a different pod.)

We don't know yet what the next step will be for Jamesie -- the radiologists and surgeons have to confer, and they haven't had a chance to do that as of this evening. But the doctor seems pretty sure that it will be surgery. If there really is an obstruction in the bowels, that's the only way to treat it. (However, apparently the fact that James pooped last night hadn't really been brought to the team's attention, so who knows if that will change anything -- probably not, but a mama can hope! The nurse who had him last night had only had him once before, about a month or so ago, so I don't think she realized that the pooping was kind of a big deal. The doctor did say that usually the contrast material just goes around poop, though, so it's unlikely that it alone was causing the obstruction. And as far as we know he hasn't pooped again since last night. So, probably I'm making more out of that one event than it deserves.)

He was doing fine today, though they did put him back on his cannula in the afternoon. Most likely he was still just a little tired after all the commotion yesterday.

We were there when the speech person was feeding Mattie, and it was really informative. It seems like the main issue for him is keeping his concentration and pacing his feeding and breathing. (He has a tendency to breathe too fast, which makes it more difficult to coordinate the swallowing part.) This is mainly a function of immaturity; he'll get better at these things as he grows, but in the meantime they want to encourage good habits rather than bad ones. For us, that means paying close attention to the cues he's giving about whether he's ready to eat at that particular moment or not. Ideally, he should be in a calm, alert state. She showed us what kinds of cues he gives when he's stressed out (raising eyebrows, twitching) -- and said he's a very good communicator. :) That way we can give him a break when he needs it. (She told us that the old approach was to just feed babies whether they acted interested in it or not, but that the new research shows that following the baby's lead makes for faster progress, and avoids problems like feeding aversion, where they start refusing bottles altogether because they have negative associations with eating.)

When we were talking to the doctor, he said that he thought it was possible that Mattie would be ready to go home in a week. Wow! I suspect this is an overly optimistic estimate and I'm certainly not going to count on it, but it was kind of a wake up call that we need to really start getting things ready at home. We're not too far from being ready -- for instance, we have a crib but haven't assembled it; we have some diapers but no wipes -- but we definitely still have some work to do! And it's hard for us to imagine being regular parents instead of NICU parents. (Literally hard to imagine -- it's a whole new world!) We've got the NICU routine down pretty well, but being in charge of our babies full time is going to be another huge transition. And I can't speak for Mike, but it's one I haven't let myself think about very much. Even now I'm scared of getting my hopes up too much. But at the same time we're starting to look forward to having them at home.

[Top two pictures are Matthew, bottom one is James.]

Gator Babies

Uncle Isaac left just a little bit too soon -- we came in today to find that the babies had some brand new hats! (Thanks, Nurse J!) Matthew is the top picture (with a pacifier in his mouth), and James is the bottom one.

James had his GI study today. He had to have basically an enema with contrast material, but they couldn't get the solution to go up very far (despite trying four times, poor kid), which maybe means that the blockage is down fairly low in his intestines. (Apparently this is a bit of an unusual location for a stricture.) The doctors are going to consult with the radiologists and surgeons and make a plan, but it sounds like it will most likely be surgery (where they remove the narrowed part and reattach the bowels together.)

At the 8 o'clock diaper change, James had a fairly good-sized poop. I don't know if there's any chance that the contrast material was just blocked by some poop that was stuck in there, but it makes me hold out the tiniest bit of hope that maybe the blockage was something other than a stricture. (We'll probably know more tomorrow when we get the full report on the GI study.)

Matthew also got to meet some specialists today. They had speech pathology come in and take a look at his feeding. (They're the ones that handle sucking and swallowing issues.) This was a surprise to us, because we thought he'd been doing really well, but apparently he isn't always as coordinated with his sucking as they'd like to see at this age. We didn't actually talk to the speech pathologist, so we don't know what the recommendations will be, but it might be things like trying different nipples on the bottle or some kind of techniques to help him practice his skills. (I was kind of upset at first that they were disparaging my baby's performance, but I guess anything that helps him get ready to come home is good!)

Added by Mike: To counteract any damage done by wearing a Gator hat, we dressed Matthew in his OSU Frat Boy outfit. Thanks Audrey!

Sunday

Not much new to report today -- James is continuing to do fine on room air, which is great. Still no pooping, though, so the GI study is probably in his near future. And Mattie is continuing to do well with his bottles (but also continuing to have some high blood pressure, so they increased the frequency of his medication).

The boys have some lovely new baby blankets made by their Uncle Isaac. (They'll have to wait until they come home to use these, though!)

[Bottom photo is James with Melanie.]

Relatives and Room Air

The boys got to meet more of their family today -- Uncle Isaac and Aunt Erin came to visit them. (The canine cousins came along to Chapel Hill as well, but were not allowed to visit the hospital.)

And look closely at James. Notice anything missing? That's right -- no cannula! They decided to give him a try on room air (or what people outside the hospital just call "air"), and he was off to a good start. He'd probably been off the cannula for an hour and a half when we arrived, and was doing well throughout our visit. Hooray for James!