Occupied

They increased James's feeds to 3 ml per hour today (which is still a tiny amount), and so far, so good. We were in visiting him today for quite a while (poor Mike didn't even get lunch!) We both got to hold him, and we were also there for a visit from the occupational therapist. (Bet you didn't think he was old enough to have an occupation yet.*) Some of his nurses had noticed that he had some muscle tightness, basically from lying in a bed all the time, and so the therapist showed us some little stretches that we could do to help him. Baby yoga! It also sounded like the issues that she observed were minor, nothing to be too worried about as far as his muscle development, so that was good to hear.

He was very alert while she was there. He was tracking one of the toys on his mobile, and he also seemed to be very interested in watching his hands. These are about the same developmental things that Matthew is doing, so it was nice to see that James is on a similar path, even though Matthew's now getting a lot more sensory stimulation than James (as my sister put it, the scenery changes for Matthew!) Also, it was very cute. :) He was also sucking on his pacifier a lot, which is good both because it's comforting for him and it means he's okay with having something in his mouth (useful for later eating!)

They got some test results back that allowed them to rule out Hirshsprung's disease as the cause of his digestive problems. Of course, we're still hoping that going slow and using this gentle formula will help him tolerate feeds.

Matthew's weight gain got the seal of approval from the pediatrician; he's now 6 lbs and almost 5 oz.

[Top photo is James with his awesome nurse; bottom photo is James looking at his hands, or alternatively, conducting an orchestra -- your choice.]

* This reminds me of when we were in Vienna visiting with some distant relatives of Mike's. We spoke only a few words of German and they spoke only a few words of English, but we were getting by pretty well with a German-English dictionary and drawing pictures. Mike wanted to ask one of them what his job had been before he retired, so he looked up occupation in the dictionary. The relative then started telling Mike about the Nazi occupation of Austria! Not quite what we had in mind -- but very interesting nonetheless.

Restart

They restarted James's feeds today, at a very small amount (1.5 ml per hour continuous). Although they decided to do this on the morning rounds, for some reason there was a delay in getting the orders (the official instructions from the doctors authorizing the nurses to give feedings, meds, etc.), so he didn't actually start getting the formula until 5 PM. It's only been about four hours, but so far, so good.

They also gave him a dose of Lasix (a diuretic) last night, because he's still retaining lots of fluid. (His weight is now over 7 lbs!) It sounds like the Lasix helped a bit. The doctor thinks that the fluid retention is due in part to not having the right protein balance; if he starts tolerating feedings, that should also help get his fluids back in balance.

We didn't make it in to the hospital today. (Just typing that makes me feel terrible!) We had planned to go this evening, but when we talked to his night nurse, she said he was sleeping, and she encouraged us not to move him around if we came in -- because if he does throw up, they want to be able to know that it's a problem with him tolerating the feeds, not because he got jiggled around or held in a position he didn't like. That makes sense to us. We want to give him the best chance possible to do well with his feedings. So, it probably wouldn't do him much good for us to be around right now, although it's extremely hard to go a day without seeing him. I'm still reserving the right to make a midnight run over there, though! :)

It's kind of a Catch-22. We want him to know that his parents are there for him, taking care of him and loving him, but we don't want him to miss us when we're not there. (I suspect that at this age that might be somewhat possible; I don't think babies necessarily have the best sense of time, and they do sleep a lot!) And we feel bad because Matthew is getting almost-constant attention, and it's not fair to little James! Of course, as my mom pointed out, neither one of them knows that.

In any case, we're sure to be there in the morning because we have to take Matthew for a weight check at the pediatrician. Hopefully he'll still be gaining weight despite his habit of falling asleep midway through his meals; I now have a renewed appreciation for the phrase "sleeping like a baby." I've heard many complaints from friends about babies not sleeping, but it turns out it's equally difficult (at least right now) to wake up a baby who doesn't want to stay up!

Mattie managed to get his thumb into his mouth a couple of times today, and he seemed to be interested in watching his hands, too, which was fun. I don't see the thumb replacing the pacifier any time soon, though.

Monday night

Thank goodness for Grandma -- she went shopping, cooked us lunch and dinner, did the laundry, and had quality time with Matthew today!

Mattie isn't smiling at us quite yet (that's one of the two month milestones), but he's making a lot of smiley expressions, which is pretty cool. I think James is doing a bit of that, too, but of course we don't get to spend quite as much time with him.

Matthew didn't have his blood pressure check visit from the nurse today, because insurance hadn't authorized it. Hopefully this is just a miscommunication somewhere rather than the start of a big hassle.

The plan for James is to restart feeding tomorrow, with small amounts of the special formula given continuously. If that works, we will all be delighted and do a dance of joy. If he has trouble with that, though, then they'll do an upper GI study to make sure there are no additional blockages (although the surgeons don't think there are). They'll also look at his stool to see if his intestines are absorbing nutrients properly.

He seemed to be feeling okay when we were visiting this morning; we both got to hold him, and he was alert for a while when we first arrived. (Apparently he wanted to listen in on the doctors' rounds!) When we talked to the nurse a little while ago, she said she thought he wasn't feeling so good (a little irritable), but maybe he just had a long day. (He was getting a blood transfusion because his hematocrit was a little low.) Poor Jamesie, I just want him to feel better!

Monday

Matthew is doing fine; this afternoon he has another visit from the nurse who stops by 3 times a week to check on his blood pressure and growth. He is still enjoying his grandma time!

James did okay with the new formula during the day yesterday, but seemed to be uncomfortable last night. Although his breathing and belly looked fine, his nurse noticed that every so often he was wincing and whimpering. When we arrived the hospital late last night to visit, the doctor was looking at him, but didn't come to a definite conclusion about what was going on; it could be something as simple as cramps or it could be something else. He was having blood and urine taken to check for infection and a urinary tract infection. (None of those tests have been positive so far.) They stopped his feedings and started him on antibiotics as a precaution. We're heading in to the hospital in a few moments to talk to the doctor about the diagnosis and treatment plan.

Mobile

After seeing James enjoy his mobile, we thought that Matthew would probably like one, too. Matthew was awake and alert for a long time (relatively speaking!) this evening, starting on our ride home from the hospital. We set up this activity gym that Grandma brought, and Mattie had a good time listening to the music and watching the toys.

James's return to feeding today wasn't quite as good as we had hoped; at the first two feedings, he threw up about half the amount that he'd been given (the feeds were small, about 6 ml). After that he was keeping the food down, but having some residuals. Maybe tomorrow will be better. He was feeling well enough in the afternoon that I got to hold him for a while, and Mike read him a story (although he slept through it!). Mike was going to hold him during his evening feeding, but then they discovered that his IV line (PIC line) had gotten clogged, so he had to have a new one put in. (Poor baby!) But our latest middle of the night report from the nurse he was doing fine and sleeping peacefully.

UPDATE 11 AM: James is still not taking the food, so the plan is to replace mother's milk with a special formula that is designed for babies with sensitive intestines. This formula is supposed to be easier for the intestines to absorb.

Today

James was feeling better today. Unfortunately, though, the problem with his digestion appears to be a functional obstruction -- that is, a part of the bowels where food just isn't moving through properly. There's not a physical blockage, but instead, there's a part where the bowels don't have enough motility. This is a frightening diagnosis because there are no good treatments for it -- we just have to wait and hope that it gets better on its own.

They've started him back on a small amount of food, and probably will increase it more gradually this time, although we haven't heard a specific plan yet. (The current attending doctor is at the end of his three-week service time, and a new doctor is coming on this weekend, so she'll most likely be the one making the decision.)

In happier news, his primary nurse put a mobile on his crib. She said he enjoyed looking at it. Now that he's getting older, he's going to need a little more stimulation.

Mattie enjoyed hanging out with Grandma. He also had his first visit from the home health nurse, who will be coming three times a week to check his blood pressure. She's very nice, but the blood pressure cuff she has was a little too big for him. I'm not sure how that affects the accuracy of the readings, so hopefully she can find a smaller one.

He also had his first bath at home (in the sink this time). He did not particularly enjoy it. Next time we'll see if he likes his baby bath tub any better.

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.