Dream Deferred

I've known what I wanted the babies to be for Halloween since before they were born.

I wanted to dress the babies up like Stanley, and dress Stanley up like a baby.

In fact, this is the entire reason we decided to have children.

But alas, we didn't have time this year to prepare properly. I had envisioned having Stanley in a baby bonnet (and maybe some type costume diaper, which I'm sure he would have appreciated immensely), but as it turns out, it's not so easy to find a baby bonnet for a dog. (And we don't even have bonnets for the actual babies.) We also didn't have time to find a proper Stanley costume for the babies, although Mike took a pretty good shot at it. The costume that James is wearing in the first picture is a puppy-dog hat and fur from an old pillow. It might have worked except that as you can see, James protested mightily at being stuffed into it.

That also negated plan B, which was to have one baby (James) dressed as a dog, the other baby (Mattie) dressed as a pumpkin, and Stanley (the dog) also dressed as a pumpkin, thus creating a unifying dog-pumpkin theme.

Oh well, there's always next year!

Happy Halloween!

Happy Halloween from our little pumpkins! (Close-up is Mattie.)

Their Halloween outfits lasted long enough for a walk down the street; by the time we had been home long enough for trick-or-treaters to arrive, we had changed Mattie because the pumpkin outfit was too warm, and Jamesie because we had to feed him. :)

The wiggle worms in the crib

Here's a short video clip from Friday, October 30.

Start 'em early

This is for all those Dogs in Spring fans out there; it's never too early to get them started on the classics.

Personal Secretary

Our day began before sunrise, with Matthew waking up hungry and James waking up too full and miserable -- his pump once again was not working, and was delivering too much food, too fast. Ugh.

Over the past couple of days, we've been feeling like James's bottle feeding has been getting worse rather than better. He used to drink 60 ml or so at a time, but now 30 ml is more common, and almost every time we try to get him in a feeding position he starts crying. It's stressful for him and for us, and we've been trying everything we can think of with little success. So we called over to UNC to see if we could meet with one of the speech therapists who worked with him in the hospital. They called us back and we have an appointment with them on Monday.

Then our former pediatrician called to let us know that Matthew needed to go in for some blood work (a routine test, but one that had somehow fallen through the cracks earlier). It was nice to talk to her; we hadn't had a chance to speak to her since we switched to the other practice, and we wanted to make sure she knew that it was for the convenience of having a place closer to home and with better hours, rather than anything about her care!

Then I had a phone call with a case manager nurse who is a resource that our insurance company provides for people with high risk conditions (including preemies). She's basically there to give advice about possible ways of solving any problems that might arise (for example, she looked into the possibility of getting a pediatric blood pressure machine, but found out that they cost hundreds of dollars).

When the mail arrived, we realized that our next Early Intervention appointment was actually on Monday, rather than on Wednesday like I thought. So then we had to call them to see if we could push the appointment back so it didn't conflict with the speech therapy appointment.

We had put some silver nitrate on James's g-tube site, but were worried that it had gotten on more of his skin than it should have, so we called our home health nurse and she graciously came to take a look at it even though we didn't have an appointment scheduled for today.

Then (on the advice of the case manager nurse) we called the pediatrician's office to let them know about the feeding issues, and also to ask them about a call we'd gotten from a pharmacy. The doctors recommended that the boys get a medicine to protect against RSV, respiratory syncytial virus. This virus generally causes just a cold for most people, but it can be deadly for preemies (and former preemies). The medicine has to be given once a month, and they recommend doing it from October through March. (We've already missed October, obviously.) Well, the pharmacy called to get our authorization, because the co-pay is $100! (And that's per dose, so $200 a month.) Yikes!! We called the doctor to see if there was any way to reduce that amount, but they said it all depends on our insurance (and apparently without insurance, this drug, Synagis, costs $1000, so I suppose we shouldn't complain. But still! Ouch!)

Then a different person called back from the peds office to discuss the feeding issues and make sure James didn't need to be seen immediately (he's gaining weight and having wet diapers and not acting unusual in other ways, so no). And then our actual pediatrician called back later to discuss things, and she said it sounded like classic reflux behavior. His dose of reflux meds was just increased last week, so she said to give it another week to see if it helps. And when we ran into James's surgeon at the hospital, he'd recommended thickening James's formula with rice cereal, and the pediatrician suggested that as well and gave us the proportions to use. (And she said she would be at the office tomorrow and Sunday in case we needed to come in -- we are SO HAPPY with this new office and doctor!)

And in between those calls, I called two offices at the hospital to see what the progress was on getting James's medical records corrected. (For the first call, I had to leave a voicemail, then someone called back to give me a different number to call for the person in charge, then I left a voicemail for her -- quite a process! For the second office, the person I need to speak to wasn't in, so I have to call back again on Monday.)

And then we called the company that supplies the pump to tell them about the continuing problems. They delivered yet another new pump (excellent customer service), but it seems really odd to me that the same thing would happen twice. The pump is pretty straightforward; it doesn't have a lot of settings or options, and we've looked at the user's manual to try to figure out if we were making a mistake somewhere, but as far as we can tell we're doing it correctly. If this problem persists, I wonder if there's some other brand or model they can switch us to.

As you can see, we're fortunate to have so many resources, but sometimes just managing all of this stuff becomes quite a production! Ah, we remember the days when we just took for granted that we could take a shower every day and eat meals when we were hungry. :)

The little guys are sleeping now, Mike heard James laughing at one of his toys today, and aside from an evening fuss-fest, Matthew was his usual smiling, delightful self. So, it's all good.

Elevensies

At the home nurse's visit yesterday, Jamesie weighed just under 11 pounds (10.98!), and Matthew weighed 11 lbs, 7 oz (but he had clothes and a diaper on, so it's probably more like 11 lbs 5 oz). They keep on truckin'!

Happy Birthday, Aunt Ann!

We love you and hope you are having a wonderful day!!

Early Intervention

A coordinator for Child Developmental Services (Early Intervention) came to the house today to do the intake paperwork for James. (Lest you think that we or they are incredibly quick on the ball, I should mention that this appointment was set up several weeks ago, before we knew about any of the hearing issues.) They'll send an evaluator out next week to see what kind of services he might be eligible for. I assume that the hearing diagnosis will automatically qualify him for the hearing-related services, but he may also need things like physical or occupational therapy. Of course, we'd be happy if they decide he's doing well enough that he doesn't need those things, but after so much time in the hospital we're sure he has some catching up to do, and we also want him to get whatever help he needs (and it would certainly be helpful to us to know what we can be doing to best support his development). So, we'll see how it goes.

The wrong diagnosis that had been given to the home health service had also been given to Child Developmental Services, so the coordinator had expected to see a baby with quite different issues. We corrected it with her, but it was a good reminder to us to follow up with the hospital to make sure things are getting straightened out on their end. (When we were at the hospital the other day, we saw one of the doctors who had taken care of James -- and who had been especially helpful to us in answering questions about his intestinal issues -- and we double-checked with her that this was definitely just an error, and she assured us that it was.)

Thanks again to all of you for your support and help. It looks like there will be some difficult times ahead, but knowing that we have such wonderful family and friends behind us makes even the bad times a little easier.

Sinking In

We've done a little more reading about James's hearing diagnosis from yesterday, and the literature seems to give a less optimistic view of the condition than the doctor did. Specifically, hearing aids don't always work, because the neuropathy causes problems with speech perception (especially understanding words when there is other noise). There seems to be a very wide range of outcomes. I'm not sure why the doctor was more optimistic than the articles we read; I think he's someone on the cutting edge of research in this area, so I don't know if he was just trying to be reassuring to us or if he actually has had more success in treatment than previous work would indicate.

We're still a bit in shock over the whole thing. All of the digestion and ostomy issues were (and are) hard to deal with, but at least there was presumably a light at the end of the tunnel when they would resolve. But this has the potential to be a lifelong serious disability. Right now it feels like there's a dark cloud over everything; there's a cold feeling in my stomach that won't go away, and our hopes for some kind of normal life seem like they're being shattered.

Mike rightly points out that even if we don't have good outcomes for his hearing per se, there are likely to be technological solutions -- voice recognition software and the like -- that can go a long way in helping James. And medical treatments are constantly advancing, so we don't know what might be possible five or ten years down the road. In the meantime, we're going to keep talking to him just like always (because maybe something is getting through), but we're also going to try to learn about other ways we can help him and communicate with him.

One thing that makes me sad is that I feel pretty confident that he could hear at some point in the hospital. Even when he was only a few days and weeks old, he would regularly open his eyes at the sound of my voice. His nurses tell us that he startled in response to loud noises, and we all thought that the music on his mobile seemed to calm him. So I wonder if he lost his hearing somewhere along the way. Or if not, it makes me sad to think of all the times we talked to him and read to him and soothed him and it wasn't getting through to him.

On another topic, the lab results for yesterday were improved. His direct bilirubin was down to 3.8, and the other liver function test was also improved. His sodium is still on the low side, though, so we'll be giving him a higher dose of that. (Apparently it's not uncommon for people to lose sodium through a stoma, and the Diurel for his blood pressure can also cause sodium to be washed out.)

Not What We Hoped

James had a repeat hearing test at the hospital today. This is a test that measures brainwave activity in response to sounds while the baby is sleeping. (And, as it turns out, not sucking on a pacifier or making sucking motions, which meant that it was difficult to get good measures on little paci-loving James!)

The results indicated that he has a (rare) hearing disorder called auditory neuropathy. Roughly, this means that sound signals aren't getting transmitted properly between the inner ear and the brain -- could be the result of faulty cochlea or auditory nerve. The test measures electrical signals in the ear and brain to identify a breakdown in the transmission of the auditory signal, but it can't tell us how James's hearing is -- kids with this condition can have anything from normal hearing (about 7%) to profound hearing loss/deafness. They'll have a better sense of where he is with it in a few months when they can do more behavioral testing. Our guess is that he's somewhere in the middle, and can hear some things but also has some hearing problems. (The audiologist thought that he was startling at around the 80 decibel level, which is about as loud as a raised voice -- but that's just her informal impression, nothing truly diagnostic.)

This was depressing news, but the bright side is that they now have pretty good treatments for it. At the lower levels of hearing loss, they use hearing aids, and at higher levels, they do cochlear implants. So, the doctor was very encouraging that even if significant impairment exists, James will be able to hear, to speak, and so on in a normal way. And catching any problem early will help reduce difficulties in things like language acquisition (or at least, we hope so).

About 40% of the kids they see with this problem have been in the NICU, and there also seems to be a relationship with elevated bilirubin levels (apparently the elevated bili can affect the nerve functioning). Our initial impression is that the diagnosis and understanding of this condition is still relatively new. But it appears that the condition is usually permanent -- there are a couple of reported cases in the literature of it going away, but the audiologist sounded as if that was extremely rare. (In other words, even when his bilirubin is back to normal, that won't solve the problem.)

It feels like just one thing after another for the poor kid.

Even though it had been a long day at the hospital, we stopped by the NICU and got to visit with two of James's primary nurses (and saw a couple of the doctors as well). They really made us feel a lot better. Even though James has faced and is facing so many challenges in life, he also has a lot of people who love him.

FYI: What is auditory neuropathy?
Auditory neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who are deaf or hearing-impaired.

Put Me In, Coach

James is ready for his Heisman. :) At least the boys were not embarrassed today to be wearing their daddy's LSU colors. (And they also say, Go Mountaineers!)

James also was awake for this evening's walk, which was good because he got to enjoy the fall scenery, but maybe not so good because it was kind of convenient that he'd fall asleep every time we put him in the car seat. :)

James Channels Elvis

For the last day or two, Matthew has been lifting his head up high when he's on his belly. He's been able to lift it up a little bit (enough turn side to side, say) for a quite a while, but now he can look up straight ahead. Hooray for Mattie!

James is getting better at "standing up" while we're holding him. He doesn't do it for long, but we figure every little bit helps in developing his muscles! (It's his baby workout program.)

It goes without saying that we're delighted to have James at home, but we're definitely realizing that we had it a lot easier with just one baby! Just figuring out when we're going to go to the grocery store is a big challenge. Presumably that will get easier when we're not on an every-three hours eating schedule for James.

And despite all the spit-ups and angst over the feedings, James continues to gain weight; he was 10 lbs, 12 oz at yesterday's home health visit.

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

Minor Disappointments

Mike's plan of taking a picture of the boys together in their cute little twin outfits (thanks, Grandma!) probably would have worked better if he had let them have their supper first! :)

The GI doctor called with James's test results, and we were surprised and disappointed to hear that his bilirubin had gone up a little bit, from 4.2 to 5. We thought he'd been looking better (less jaundiced). The doctor explained that these results could mean the bili was about the same (a margin of error in the tests), or that sometimes it just takes a while for the bilirubin to clear out of one's system. However, they want to make sure there's not something else going on that they're missing, so they're going to check his levels again on Monday. One of the other liver function tests they did had improved, though, so there was some good news as well.

Our other disappointment was that we had tentatively planned for the babysitter to come back today, but she ended up having to work at her regular job instead -- too bad!

What We Have Here

...is a failure to communicate. Today's follow-up appointment continued the Kafka-esque trend of our discharge experience. We arrived at the hospital half an hour early for James's pediatric gastrointestinology appointment, because he was supposed to have some blood work done immediately before the appointment. We show up at the lab, and they won't do the labs because the lab request is on the wrong form (a prescription form rather than whatever they need). So they send us over to the check-out desk. At the check-out desk, they tell us to go to to the waiting room and a doctor will come out with the correct form. Meanwhile, at the check-in desk, they told us to let them know when we're done with the lab work. Well, the doctor never appears to give us the forms, so we can't get to the lab. After time passes, I let the check-in desk know that we're still there, and finally we get called back into an exam room.

When the doctor arrives, we find out that 1) they don't really know why we're there, 2) they have only the most minimal information about James rather than his complete discharge summary or medical records (despite this being in the exact same place as his Monday appointment where they did have access to this info), and 3) they didn't know about any lab work that was supposed to be done. We thought someone from the NICU had been in touch with them. After all, we had not requested this appointment; the NICU doctors had set it up (our impression was to follow his bilirubin levels and make sure his liver function was continuing to return to normal).

The doctor did increase James's dose of reflux medicine (and we liked his straightforward approach -- he was clearly a very knowledgable person), but it really didn't seem like a necessary visit. He gave us the right form for the lab, and we were able to get the bloodwork done after the appointment.

The upshot is that we spent all afternoon and a $60 copay for lab tests that probably could have been done through our pediatrician instead. The doctor that coordinated our discharge is a nice person and (as far as I know) a competent physician, but she owes me about six hours of my life back.

And the process of getting the diagnosis mix-up removed from James's records is apparently making its way through multiple departments, including Risk Management, Medical Records, and possibly the Legal department (why Legal? we have no idea).

But on the bright side, both of the boys were smiling and happy this morning. Matthew seems to have learned how to bat at the toys on his activity gym, and finds it very entertaining, while James enjoyed "Barnyard Dance." Top photo is Matthew and the bottom one is James. At the home health visit, James's blood pressure was good and his weight was 10 lbs, 8 oz, so all is well on that front, too.

Strolling

We took advantage of the lovely fall weather today and took the boys for a walk in their strollers. James slept through pretty much the entire thing, but Matthew was awake and looking around.

Follow-Up

It was so much fun to have family visiting -- we wish they could have stayed longer! (We'll look forward to another round of "keep the toddler from tumbling over onto the babies" at Thanksgiving.)

The boys are starting to grow out of their newborn size outfits. Wow! We're starting to rotate in the 0-3 month sizes.

James had one of his gazillion follow-up appointments today, this one with pediatric surgery. (The appointment was at 1 PM, yet somehow it took us all morning to get ready to get out the door! Feeding and meds are a major production around here.) It all went well; everything (by which I mean the g-tube and ostomy) looks fine from their perspective. The only very minor issue is that James has a little bit of granulation around his g-tube. This is extra tissue that can grow up around wounds, so we have to use some silver nitrate over the next few days to get rid of it. They also gave us some stretchy material to put around the g-tube to keep it from moving around during tummy time. We've been told over and over again that it's okay to put him on his belly (and in fact, very important to do so for developmental reasons), but having that little extra protection for the tube will make us a lot more comfortable doing so.

After the appointment, we went upstairs to visit some of the boys' favorite NICU nurses. We're not allowed in any more -- we had to wait in the hallway! It's perfectly understandable (and we halfway expected that would be the case), but it was a little strange after practically living there for the past five months. Anyhow, it was wonderful to visit with the nurses (and say hi to a couple of the docs), even if only briefly. We miss them! (And James probably does, too -- he gave at least one of the his nurses a smile when she first peeked into his stroller!)

We also talked to the case manager about the diagnosis error in James's referral to the home health company. It turns out that it came from one of the post-operative notes from one of his surgeries. (We don't know how that happened; presumably a dictation error or a mix-up with another patient at that stage.) So, it sounds like it has to go through the hospital risk management process to get corrected (they'll contact the surgeon who should file an addendum to James's medical record). I'm glad we caught it now, because we really don't want those mistakes to remain part of his file.

Matthew has been wonderfully smiley recently. And I think he may be starting to bat at the toys on his activity gym a little more intentionally, instead of just the baby flailing around. And James has given us some smiles as well. We decided that we're not going to try to stick so strictly to the hospital feeding plan, because it was making him and us miserable. (I don't know why it was working for him there and not here, but we gave it our best shot.) Since the higher volumes seemed to be making him throw up more, we're cutting back a little bit with the idea of easing back to the higher levels once he gets settled in. We're also trying to pay good attention to his cues and feed him by bottle when he acts hungry. So far it seems to be going well; he's been doing a good job with his bottles (Mike has the magic touch there), and he's been keeping his medicine down, thank goodness. The key will be whether he continues to gain weight (and so far he seems to be), so we'll be keeping a close eye on that with the home nurse.

Family Time

We are enjoying a lovely visit from Aunt Nora, Uncle Adrian, and Cousin Daniel. (And therefore, the living room has been taken over by baby toys!)

Hooray for Grandma

Grandma has the magic touch to soothe cranky babies! (And she cooked a delicious dinner, too.)

Jamesie is still throwing up after his medicines -- ugh. He's not on Tamiflu any more, so that's not the culprit. (Too bad, since it would have been an easy solution.) We tried laying him on his back instead of propped up in his boppy pillow, and that didn't help either. Guess we'll have to consult the pediatrician. But otherwise the little guys are doing well!

[Photos are both James.]

Improvements

Grandma arrived tonight for a weekend visit -- hooray! She was supposed to fly in, but bad weather in Atlanta caused her flight to be delayed, which would have meant that she wouldn't get here until tomorrow, so she ended up driving from Florida. (She said an advantage of that was getting to bring more toys for the babies.)

We also got a new feeding pump, and so far it looks like this one is working properly. That's a relief!

We also had a babysitter come in for a few hours today. I came across her ad on Craigslist after our rough first day and figured we could use a hand! Even though yesterday was much better and more pleasant than Tuesday, we didn't get much else done besides baby care. Having the babysitter here today allowed Mike to get a bit of work done. And it was a good learning experience, because I ended up still doing a lot of baby stuff, even though she probably could have handled it just fine (she's not only an experienced nanny but also a nurse!) -- it was hard for me to let someone else do the things that I would normally be doing. In retrospect, though, I really should have taken advantage of the opportunity for a nap!!

And on that note, off to bed!

Fluid Mechanics

We have a new hypothesis about the cause of James's throwing up yesterday -- the feeding pump is not accurate with the volume of food it's delivering. We've now tested this a couple times with careful measuring, and there's definitely a problem. Basically, it thinks it's given him less than it has, so we're pretty sure he ended up getting extra food extra fast the other night. So when we tried to give him his morning food, he was probably already stuffed! Poor baby!

We called the equipment company about this problem, and they're going to bring us a replacement pump tomorrow.

James took his whole amount by bottle at his 6 PM feeding today. It ended up being spread over an hour and a half because his home health nurse visit happened in the middle, but it was still nice that he was able to do it!

We also got a couple of smiles from him today. Very sweet!! And we think the twins are noticing each other. When they were playing on their backs near each other, Mike said that Matthew was really looking at James. And in the evening, James was up on the scale during the nurse visit, and I was holding Matthew (who was asleep), and James was really looking at Matthew. Presumably they'll notice each other at the same time pretty soon now! We're still not putting them right together yet because I'm not sure we're past the flu transmission window, but a few more days and I'll relax a little more.

On a sad note, we found out this morning about the unexpected death of our neighbor across the street. She was a kind and generous person, and she was so enthusiastic and encouraging about the babies -- we wish she had been able to meet James. We will miss her. Rest in peace, Kerry.

Boys in Blue

Top photo is Mattie and Stanley, bottom is Mattie and James.

Jamesie and Mattie Love Grandpa

Grandpa Green was in for a short visit, but got to be here for Jamesie's homecoming. The boys enjoyed sitting with him! (Top photo is James, bottom is Matthew.)

Alchemy

One of James's prescriptions is for sodium chloride -- salt water. Amazingly, this one turned out to be the most difficult to fill, and we had to go to the compounding pharmacy to get it.

Guess how much it cost.

No, guess again.

$45.

They are turning salt water into gold!

Above and Beyond

Mike had been trying to drink the coffee in this picture all day, and finally got to it around 8 PM!

Our pediatrician was kind enough to call James's prescriptions into the pharmacy so we didn't have to make separate drop off and pick up trips (or have a long wait with the babies). I called the pharmacy around 4:15 PM, and discovered that they couldn't actually fill his prescriptions (they don't do compounding, and they hadn't bothered to let the doctor's office know that when the prescription was first sent over). Ugh!! (Note to discharge doctor: might be nice to warn people about that kind of thing, especially when the medicine is time-sensitive, like say, a flu treatment.)

The lady at the pediatrician's office was awesome. She called the local compounding pharmacy but they had already closed, so she called several different places before finding one who could get us the meds tonight. Bless you, Martha at Chapel Hill Pediatrics!

And the pharmacist she found was equally wonderful. They had a problem with the insurance in the computer (sounded like some confusion about twins), and he actually called someone up and stayed on the phone with them for probably fifteen minutes getting it straightened out. And he compounded the medicines so that they were both the same easy-to-remember dose. (They're also cherry flavored, though James won't get to appreciate that, since they're going in his feeding tube for now.) So if you're looking for a pharmacist in Chapel Hill, Dave at Harris Teeter North is The Man.

It was no fun to have to have those extra hoops to jump through today, but we're grateful that these amazing folks came through for us in a pinch.

(As you may have noticed, I don't usually put people's names other than family members in the blog -- I figure people shouldn't have to be identified on the Internet if they don't want to be -- but in this case it seemed appropriate.)

And we're also grateful for our wonderful friends Y & J, who not only walked our dog but brought us dinner as well (which we finally got around to eating after 10 PM!)

We are not so appreciative of whoever gave the home health nurse's company the wrong diagnosis for James. The nurse is the same one who came to see Matthew, so she knew immediately that it was a mistake. It's a bit of a mystery to me how UNC can excel at so many aspects of patient care yet manage to make a bit of a mess of things after discharge.

Jamesie has still been spitting up/throwing up some after eating, but nothing quite as dramatic as this morning. (Our pediatrician noted that Tamiflu can sometimes cause nausea, and the doc at the NICU suggested that he might be just being moved around more than he's used to, or that it's otherwise related to getting used to his new surroundings. Neither seemed especially concerned about it at this point.) Either way, we hope tomorrow goes better! And wish us luck for sleeping tonight!

PS: And thanks to you all for your support and encouragement -- we especially needed it today!!

New Beginning

To be honest, it was a rough night. We need a better workspace for James's care, and we're not in a routine yet, so everything took a long time. Fortunately, the boys were fantastically good; Matthew was starving when we got home from the hospital, but then slept really well, and James slept all the way home but then enjoyed sitting with us or watching his mobile. I was worried that it was going to be really stressful for him to be away from the only "home" he's ever known, but as far as I can tell, he's just really interested in all the new surroundings.

And the whole flu thing was really stressing me out; the NICU doctor said "just use good handwashing", but realistically, with two babies at home, keeping every blanket, burp cloth, pacifier, etc., separate and washing our hands in between the two of them every time is just not going to happen. We were trying (and still are), but on top of all the other demands of twins, it's crazy-making.

And then James threw up pretty much his entire feeding this morning, which was of course the one with all his medications in it. I gave him a bottle just a little while ago, though, and so far so good with keeping it down.

We went to the pediatrician today (note to discharge coordinators: did you really have to schedule the appointment exactly at James's feeding time?), and she was great. She reassured us (me) that they'd seen a lot of mild cases of the flu, that any exposure for Matthew had probably already happened, that they were on call after hours, and that at the first sign of a fever or illness they'd give him Tamiflu. So hopefully I can stop worrying that giving Mattie the wrong paci will be a death sentence. (Once again I have made a wonderful first impression with medical personnel by crying through the entire hour-long appointment.)

We're so glad that James is finally home, but in retrospect we maybe should have waited until this morning. The doctor called us with the news of the possible discharge late enough that the hospital pharmacy couldn't fill our prescriptions in time (and "just running out to another pharmacy" isn't exactly a simple matter with a new high-needs baby coming home, especially since two of the meds have to be specially compounded, and it was close to 8 PM by the time we were leaving), and since James has the flu Mike had to assemble a second crib at one in the morning (because we had been planning to have them in the same crib but didn't want to put the boys in the same one just yet). But when the doctor called and gave us the choice of last night or tomorrow, it didn't feel like much of a choice; what kind of parents would we be if we just left him there? I'm a little sad that his discharge was on a cold rainy night when almost no one we knew was in the NICU to say goodbye to (though on the bright side, one of Matthew's primaries was there on the night shift and one of James's favorite nurses came by to hold him before he left), rather than on a nice sunny day like today. I guess I'll just add it to the list of things that didn't go as planned with this whole experience.

So we're stressed out right now, but we're still very glad James is home, and we're looking forward to getting in a better routine so we can actually spend more time enjoying the babies instead of just trying to keep up with their needs.

He's Home!

James is home!!! We are happy (but also a bit overwhelmed -- we arrived home just in time for his 9 PM feeding and medicines).

His discharge was not at all how we imagined it last Thursday (among other things, we didn't expect he'd be coming home with us still worried about him being contagious with H1N1 flu), but hey, we'll take it.

The Plan

The plan is "we think he's ready to go home -- come pick him up."

A New Game

Matthew has recently started poking out his bottom lip in a classic "pouty face." (It's so cute. The first time he did it, I wasn't sure if he was actually pouting or just trying on different expressions!) Today he did it, and Mike imitated him -- and Matthew laughed at him! It was adorable.

No fever for James, but still a little cough. The doctor is supposed to be calling us this afternoon to make a plan.

Communication

James is doing fine. He didn't have any fever last night or today, and is still taking his bottles well. Matthew is also doing well, despite the indignity of having his father dress him in the wrong team colors for the LSU/UF game last night.

Yesterday was a little frustrating in terms of communication with the NICU. The babies are on a every three hours care schedule, and James's schedule is an hour off from the regular schedule (e.g., the usual care times are at 8, 11, etc., and he's on 9, 12, etc.). So we tried not to call at the regular care times, because presumably the nurse would be busy taking care of her other baby, and we tried not to call at his care times, but even so, we got someone other than his nurse answering the phone a couple of times. In fact, I don't think we ever actually got to talk to his night nurse. Fortunately, the other nurses were at least able to tell us that he was doing okay and did not have a fever.

The worst was when we called for our late-night update and were on hold for almost a half-hour. (I'm not exaggerating; our phone has a timer on it. Normally we wouldn't have been that patient, but Mike was working on his computer and I was in the other room with Matthew.) We hung up and called back, and were on hold for another five minutes, at which point I decided there must be a problem with the phones, and we called back and asked to just talk to someone in Pod C. The person who answered informed us that James's nurse was on break. That's fine, but it's unacceptable (and in fairness, extremely unusual) to leave a parent on hold for that long. There are times when that kind of delay would have made me hysterical, because the longer we have to wait on hold, the more I start to worry that no one is answering because something bad has happened. This time, I figured that since he'd been fine all day and all of last night, he was probably still fine, but even so -- the lead story on the daily news is about kids dying of the flu, and my former preemie is in the hospital with the flu, and so somebody needs to pick up the phone when we call.

So then when I went to sleep I had nightmares about all of that, from which Matthew thoughtfully rescued me by waking up hungry a mere two hours after I had gone to bed.

Fortunately, today is off to a better start. James's nurse is someone who has had him before, and she mentioned that she held him for a while after feeding him. Yay! (I was a little worried that someone who had never had him might feel like they got the short end of the stick by being assigned to him -- "great, I get the kid with the flu and the ostomy bag?")

I think we're going to stay away from the hospital again today to be on the safe side. But this may be the first time I've ever gone more than a day without seeing my James, so it makes me sad. We'll just have to give him extra cuddles when he comes home!

Saturday Night

The LSU-Florida game did not turn out the way Matthew had hoped. Luckily for him he was spared the pain of watching 60 minutes of LSU offensive lameness because he fell asleep before halftime.

On a more optimistic note, James had a comfortable day with no fever. We are hoping that next weekend James and Matthew will be able to watch football together in the same room at home. (Below is James in his new crib in pod C.)

Saturday

James is doing well -- no fever last night or today, just an occasional dry cough, and he's still eating well (60 ml from his bottle this morning). So, those are all encouraging signs. And we were also happy to hear that (according to his nurse) no other babies in the NICU have shown fever or flu symptoms.

Matthew is also doing fine; no fever or signs of illness. He is all set to cheer on the Buckeyes today.

To be on the safe side, we decided not to go into the hospital today. For now, even with the isolation room precautions, we don't want to risk bringing home germs to Mattie, or if we're flu carriers (despite not having symptoms), we don't want to risk spreading it at the NICU. (But I miss my little Jamesie! He probably needs extra cuddling since he might not be getting much in the isolation room.)

Flu

We just got a call from the NICU, and James has the flu. Ugh!!! It's type A influenza, and H1N1 (swine flu) is one possible kind of type A flu. They don't know if it's H1N1, but it doesn't matter because they treat all cases of type A flu the same way. In this case, they're giving him Tamiflu.

So, they were definitely wise to put him in the isolation room. We really hope that he didn't spread the illness to anyone else -- fortunately, people in the unit are very good about hand sanitizing. Right now there aren't other babies with fevers or flu in the NICU, so that's a relief.

It seems like the most likely way he would have gotten it is from us, but none of us have had fever or cough or really anything at all, except for a few sniffles yesterday that we attributed to dry air in the house. But we feel terrible that we might have somehow gotten him or others sick.

Of course this is a more scary result than a UTI, but the fact that it's been more than 24 hours since he had the initial fever and he still seems to be doing fine is encouraging; it's possible that this means he just has a mild case of it. (Let's hope so!) Of course, they're going to be watching him very carefully for any changes.

Perfect Tens

Matthew's weight at today's pediatrician appointment was 10 lbs, 5 oz. And the most recent weight we heard for James was just a little over 10 lbs. What big boys!! And now the older brother is once again the bigger brother -- James's weight gain has leveled off over the past two weeks or so, probably because he's using more calories with bottle-feeding. (The doctors are keeping an eye on that and may add some extra calories to his milk.)

We really liked Matthew's new pediatrician. She's not the one we'll be seeing regularly, but it gave us a good feeling about the practice. She was very nice, and also seemed very well-informed about preemie issues. (It was a bonus that there did not appear to be any people with contagious illnesses in the waiting room!) Of course, I think the nurse there thought we were a little nuts, because the first thing we did when we arrived was go for the hand sanitizer, and then asked to have our baby's blood pressure taken! ("Why?" "Because he's on high blood pressure medicine.") Oh, and then we followed up by asking for his weight in grams. I think the NICU has turned us into high-maintenence parents. :)

James is about the same as yesterday; he doesn't seem to be acting sick, and he's still drinking his bottles fine (60 ml this morning, then 30 ml for the next two). He did have a slight fever at his afternoon assessment, but when she checked it again 15-20 minutes later, it was down to the high endof the normal range. So, the doctors weren't too concerned about that. Nothing has come back yet on the cultures, but a UTI is still the most likely suspect. If that's what it is, it sounds like they'd want to do a 5-7 day course of IV antibiotics (but I think they started that yesterday, so at least he'll get credit for "time served.") If none of the tests come back positive, it sounds like they'll want to have him go 24-48 hours without a fever or other issues.

We're really glad that he's not showing other signs of being sick, but it's still a bummer to have him in the isolation room. They already have another baby in his old spot in Pod F, and so we have this strange feeling of disorientation -- not only is he not home, but on top of that we've been jolted out of his comforting, familiar surroundings. At least there were a few familiar faces among the Pod C nurses.

We can't have Matthew visiting in the isolation room, so that means Mike and I can't be there at the same time. And having to wear the gown, mask, and gloves takes some getting used to. James looked very puzzled when I was talking to him through the mask -- perhaps I'm just projecting, but it certainly seemed like he was thinking "you sound like mom, but you look really strange!"

So another bummer was that we had gotten a cake (and some fruit, as a nod to healthy eating) to bring in to celebrate James's discharge, and then we didn't have much to celebrate. But my dad reminded me that it's never to early to say thank you, and so hopefully people enjoyed it today.

[Top photo is Matthew; bottom is James's isolation room, decorated with Curious George.]

Solitary

The latest report is that James's temperature had gone back down into the normal range, which is good. The "quick" urine analysis showed increased white blood cells (and some red ones), which may suggest a UTI. However, it'll take the usual 48 hours for them to get results back on the cultures for infections (or perhaps sooner if something becomes positive), and they're also doing swabs to test for flu and respiratory infections, which apparently take about the same amount of time. He has a cough, but other than that is not really showing signs of being sick. He'd even taken 80 ml from a bottle this morning -- a new record for him, and almost his full amount. (I'd actually noticed a little cough several days ago, but I chalked it up to having some secretions from being on the respirator during surgery, and then when I heard it yesterday I assumed it was reflux, because it was in the middle of his bottle. It sounds like what he's having now is a little more frequent than that, so we'll see.) They started him on antibiotics, which is the usual precautionary measure.

All this means that he most likely won't be discharged until early next week (that is, assuming he doesn't start showing additional symptoms or problems -- keep your fingers crossed!) They'd want to wait until the tests come back and they're able to treat whatever it turns out to be, and it sounded like even with a best case scenario, they would be a bit reluctant to do a weekend discharge because it's hard to coordinate the follow-up care. Generally, they schedule a pediatrician appointment the day after discharge.

Because of the possibility of him having a respiratory illness or virus, they've moved him to one of the isolation rooms off of Pod C. (He's been put in solitary!) If we go visit him, we'll have to wear a mask and gloves. I'm kind of sad about him not being in Pod F any more (especially since a lot of his regular nurses, including his primary, were working today -- it would have been a wonderful day to say our goodbyes). The good thing about the isolation rooms is that they're quieter, so he might be able to get better rest. But I worry that if his pacifier falls out of his mouth, it might take longer for someone to notice and put it back for him!

We decided not to go in tonight, because on the chance that he does have something contagious, we didn't want to worry about passing it on to Matthew. (We've checked Matthew's temperature several times since we got the news about James, and it's been normal; he doesn't seem to be acting sick at all. And we do have a pediatrician appointment for him tomorrow -- the new patient visit that was supposed to be for both boys -- so we'll have our bases covered.)

This all reminds me of the day the boys were born. It was a Thursday, and I was supposed to be discharged that day -- in fact, they'd already done all the paperwork and Mike was there to pick me up. Things looked fine in the morning, but when they were working on getting one last monitoring session on the babies, I had increasingly terrible waves of back pain that they eventually figured out was labor. So, it was good that I was still in the hospital when that happened (I was 7 cm dilated by the time they figured it out and they rushed me upstairs for the C-section immediately), and similarly, we're glad if James had to have one more bout of something, that they noticed it when he was still in the hospital rather than us having to figure it out (and possibly take him to a germy E.R.) once he was already home. We're really disappointed about not having him home (and healthy), but the bright side is that they caught it when they did.

Not Today After All

So the doctor just called and James has a fever. It might just be a little cold, it might be another UTI; they don't know so they're running some tests. But that means he has to stay another couple of days.

Ugh. So disappointed.

Tomorrow

James is scheduled to come home tomorrow. It feels like a miracle.




The rooming-in went really well. (I spilled some milk out of the g-tube in two different ways, but hey, that's how you learn!) There were a couple moments of stereo crying, but for the most part, both of the boys were happy and quiet.

We said our goodbyes to two of James's regular nurses tonight. We're going to miss them!

Preview of Coming Attractions

Scene from our rooming-in: Mike has left the room for a few minutes. Matthew starts screaming, and while I'm busy changing his diaper, James starts crying too. So when Mike arrives, I'm holding James's pacifier in his mouth with one hand, and I've got Matthew in the other arm, propping up his bottle with my chin so that he can eat. (Our life sure is going to be different soon!)

The rooming-in is going fine; we're getting the hang of using the feeding pump, and James has been doing well with his bottles, too. His VCUG (flow test to make sure urine wasn't refluxing into his kidneys) turned out normal, so he's off the antibiotics that they had him on as a preventative for UTIs. And they'd tested to rule out hepatitis as a cause of his elevated bilirubin, and that came back normal/negative as well, so all good news.

James's nurse had him out in the stroller when we arrived, and he had three pacifiers (still in their packages) tucked in around him. We joked that she was well-supplied, and she told us that he'd been leaving a trail of them around the halls (just like breadcrumbs, so he could find his way back).

Transitions

James seems to be handling the transition from special formula to regular formula fine. (Yay!) He continues to do well with his bottles, usually in the 30-40 ml range (so, a little less than half of his feeding volume). And his bilirubin is continuing to go down (the most recent one was 6, which is still elevated but heading in the right direction).

Today we learned what to do if his g-tube comes out. Hopefully we won't have to put that knowledge into practice!

We'll be rooming in with him tomorrow. That means that we'll have him and his crib in one of the sleep rooms down the hall from the Pod, and we'll be in charge of doing all his care, including setting up the feedings with the pump, giving his medications, and taking care of his ostomy. It's like a practice run so that we don't go from having all the support of the nurses to going cold turkey at home. With Matthew, we did an overnight visit, but since James is on continuous feeds and should be mostly sleeping through the night, we're going to do an extended daytime visit and head home after midnight. That should allow us to get practice with everything, but it means we (hopefully) won't be a complete wreck the next day -- as we discovered with Matthew, it's hard to actually get much sleep in the sleep rooms.

We've decided to change our pediatrician to one closer to home that has weekend urgent care hours. I called them today to see if they could handle James's medical conditions. (The advice nurse who returned my call was really great, which seems to be a good sign.) Even though it's just a fact that he has special needs, at least for now, it was emotionally difficult to say that out loud -- that label makes me sad. Along the same lines, he's been referred for evaluation for developmental services. I'm guessing he might benefit from a continuation of the kind of occupational therapy he's been getting in the hospital, to help his motor skills catch up from being there so long. (From what we hear, he's been making great progress with his exercises with the hospital occupational therapist, so that's very encouraging.) But even so, I wish he didn't need it.

In the picture, James is in the baseball outfit, and Mattie is in the truck outfit. Not the most flattering picture of either of them, but it's fun to see them together!

UPDATED to clarify: When I say special needs, I mean special physical/medical needs -- he has the feeding tube and the ostomy, and his doctor(s) will need to monitor his liver function to make sure it's returning to normal. However, there's no indication that any of this has affected his mental functioning; as far as we can tell, his social development seems to be totally on track.