Basketball blues

Bill, this is for you! Thanks for the outfits. I hope they bring UK some luck, except when they play LSU.

Feeding Time

Over the weekend, James didn't want to eat baby food; he closed his mouth and turned away every time the spoon came near. This had Mike a little concerned, but then yesterday James came back around -- our wonderful babysitter discovered that sitting him next to Matthew and feeding Matthew while ignoring James made James decide that he wanted some food, too. :)

Grandpa Green is here for a short visit, and he got to join in the feeding fun!

Lil' Monkeys

Aren't they cute?

Both Matthew and James can go find the Curious George when we say, "Go get your monkey." :)

No Surprises

James's appointment at the Special Infant Care clinic went well. As we expected, the two main areas that we need to work on are his expressive language (making sounds, speaking) and eating (more solids). His receptive language (understanding) was in the normal range, which was nice to hear (no pun intended), and they were happy with his progress on motor skills.

Did I mention that he's cruising -- walking while holding on to furniture -- now? Go James! He's also holding out toys to give them to us, although he only sometimes actually lets go of them. It's very sweet. (I think this may be in part a result of his audio-verbal therapist working on the phrase "give it to me" with him last week, although he's just doing it spontaneously, rather than in response to our requests.)

We met with the nutritionist, and she suggested that instead of increasing the calories in James's formula, we should try adding some rice cereal to his bottles because it might stop the food from moving through his system so quickly (which might mean that he's not getting the full benefit from what he's eating).

I'm still struck by the irony of all of these post-surgery things that we're doing to slow down the passage of food through his digestive system, because I clearly recall the period of time in the NICU when they thought James might have a functional motility problem (that is, that his intestines might not be able to move food through well or quickly enough). There are not good treatments for those conditions, so the worst case scenario there was that he would never have been able to come off IV nutrition (with the high risk of early death from liver failure or central line infections). I vividly remember the world-famous neonatologist standing next to me at James's bedside, with eyes full of sympathy, saying, "We all hope the surgery will help, but it may be that his intestines will just never work right." We're sure glad that James exceeded expectations there! :)

In other news, the boys went swimming in their pool again yesterday, and Mattie got to try out the new swim diaper that Grandma Georgia got for him. (Thanks, Grandma!) We don't mind them going in with nothing on, but the swim diaper seems like it will work well if they have a chance to go in a bigger pool.

One Year, A Little Late

The boys had their 12-month pediatrician appointment today. (Why, yes, it's actually more of a 13-month appointment, but that's when they could get us in!)

Their blood pressures looked good (88 systolic for James and 100 for Mattie), their head measurements looked good, and we get to stop giving them vitamins (yay!). James is a pound or two below where they'd like to see him on the growth curve; he's at 15 lbs, 12 oz. But his length looks good, so the doctor doesn't think there's a big underlying problem; we'll just try to get as many calories into him as we can. Mattie's weight was fine (his length had fallen off his curve a little bit), but the doc thinks he still may have some catching up to do.

Of course, we're not quite sure what Matthew's weight really is -- he strongly objected to being put on the scale. When we tried to lie him down he flipped over and tried to crawl off; when we sat him down he stood up and grabbed for me. The first weight was 20 lbs, 5 oz, and the second one was 21 lbs, 8 oz, so you can see there's a substantial margin of error!

They did a couple of vaccinations (Prevnar and Hep A; they're waiting on the others until the 15-month appointment, since we may be traveling soon) and had to take some blood for lead testing. Matthew was very upset by the whole thing and seemed completely wiped out afterwards. Poor baby! James cried and was bright red when we came back in to get him, but he calmed down pretty quickly.

On a more positive note, Mattie also had his first bites of macaroni and cheese today. I bet they won't be the last!

James's Early Intervention coordinator and his developmental therapist came yesterday. They both think he's doing well and is pretty much on track for his adjusted age (10 months). Hooray for James! After his appointment at the Special Infant Care Clinic tomorrow, we'll reassess how frequently the developmental therapist will come. (My sense is that right now the main issue will be getting him caught up with his language skills, but now that his hearing aids are fitting properly, my guess is that he'll start moving ahead more quickly in that area. When the EI coordinator was here, she noticed him imitating sounds and responding to "yay" by clapping, so those are both good things.)

We think James knows the sign for milk. I had the Baby Signing Time video on yesterday, and James was standing up holding on to one of his toys. He turned around toward me and made the sign for milk. I said "milk" and did the sign back to him, and he did it again -- so I brought him his milk, and he happily drank it! Mike said he did the sign again this morning on the changing table. I'm pleased and a bit surprised -- we haven't been very good about doing any signing, so I'd be impressed if he picked it up just from the video or our occasional times doing it. We'll see if it keeps up!

We also seem to have gotten the diaper rash under control, at least for the moment -- the last couple days of it's been mostly gone. What a relief! We definitely have to still keep doing preventative measures, but diaper changes are now a much less painful experience for all concerned.

Happy Birthday!

Happy birthday to Grandma Georgia! Wish we could be there to celebrate with you!

Gone to the Dogs

Matthew was inspired by his doggie outfit the other day -- he decided to check out the dog door. (Actually, we normally have it closed off by the baby gate, but since we were going outside he had a rare opportunity.) We didn't let him crawl through, though; there's concrete on the other side which probably wouldn't be good for baby knees or heads!

One of Matthew's current favorite books is called A Big Dog: An Opposites Book (a birthday present from his wonderful babysitter Nicole). One of the pairs is "hot dog" and "cold dog", and when we get to "hot dog", Matthew makes a panting noise! It's so cute. :)

One of Matthew's other favorites is the Baby Einstein dog book. Yesterday he wanted me to read it to him three times in a row. (Yikes -- I thought kids didn't get into that repetition phase until they were a bit older!)

You may also notice in the bottom picture that one of the foam alphabet tiles is detached from the rest. This is one of Matthew's current favorite games -- he takes them apart and then starts to chew on a piece of it. I say no, he takes it out of his mouth for a second, then puts it back in his mouth. Rinse, repeat. (I'm not so fond of this game. It usually ends with an adult taking away the piece and/or physically moving Mattie to another location.) Ahh, the testing of the limits. So it begins.

Summer Fun

This weekend, the boys had their first "swim" in the pool that Auntie Nora and Uncle Adrian got them for their birthday. Mike plunked James in first when the water was too cold, and he was not amused. But once we added some warmer water, both of the boys had a great time. (Mike and I experienced some of the water, too, as Matthew is a champion splasher!)

Happy Father's Day!

Happy Father's Day to our fathers, the best anyone could ever want. Thank you for all of your love, support, patience, and wisdom over the years. We love you!

And Happy Father's Day to Mike, who has gone above and beyond the call of duty in every way as a father. Raising preemies may be a bit more than anyone bargains for when they decide to start a family, but Mike has been amazing. We love you!

And Happy Father's Day to the all the other dads out there -- we hope your day is wonderful.

Triple Birthday Happiness

James (and Matthew) say Happy Birthday to Auntie Nora, Uncle Isaac, and Auntie Erin!! (No, they're not triplets.) We hope you all had a wonderful day!


P.S. If you look closely, you can see James's bottom two teeth peeking out!

Freedom for My People

Matthew's new goal in life is to figure out how to open (or scale) the baby gate. He knows that there's a button on the top involved, but unfortunately for him (and fortunately for us), there's also a bottom latch that requires lifting up to open.

But for now, his current system of either 1) making a break for it as soon as he sees an open gate, or 2) pulling up on the gate and wailing at the top of his lungs, occasionally works for him.

When we first started babyproofing, some people would say things like, "You never know, some kids aren't climbers." Those people apparently hadn't spent much time around our boys. :) We are thinking of hiring Matthew out to spot the flaws in other people's babyproofing systems. Did I mention that he has an unhealthy fascination with the baby-safe electrical outlet cover?

Grandma Withdrawal

Grandma Georgia is at the airport headed home, and we miss her already!

Surgery Followup

James went for his surgery follow-up appointment on Monday, and everything looked good.

James had pulled off about half of the steristrips (adhesive gauze) over his main incision, and the surgeon removed the rest. The surgeon also took out the stitches in the incision where his ostomy had been. (The stitches in the main incision just dissolve on their own, but they use outside stitches for an ostomy closure to allow it to heal from the inside and reduce the risk of infection.)

I was also happy to see that James was very cheerful during the appointment; he waved at the surgeon and smiled at the nurses, and only fussed when he was actually getting the stitches out and when they had to make repeated tries to get his blood pressure. By the time he left the hospital after his surgery, he'd developed something like stranger anxiety -- he did not want to be held by anyone but me and Mike, and sometimes he would cry when the nurses came in. That's certainly an understandable reaction to several days of lots of strangers doing relatively unpleasant things to him, but I was really glad to see that it appeared to be only temporary.

The only issue is the continuing terrible diaper rash. They gave us a prescription for cholestyramine, which helps absorb bile and makes the poop less acidic, so it should be a little easier on his bottom.

Our latest experiment (started this afternoon) is to put him in loose cloth diapers during the day. We're hoping this will allow his bottom to get enough air to help heal up, but without having to put down a bunch of plastic and otherwise try to contain possible messes from no-diaper time. (Thanks again, Tanya, for the diapers -- they've been wonderful burp cloths for months, and now they get to serve another purpose!) They require fairly frequent changing (three in the first hour or so!), but that's fine, especially since we're hoping that once we get the rash healed up, we can prevent it from recurring even with regular diapers. (Wish us luck!)

By the Numbers

Time spent trying to get Matthew down for a nap: 2 hours

Actual time Matthew spent napping: 30 minutes

Number of times hearing aids retrieved from James's mouth: 3

Number of babies needing extra baths: 2

Time first gin & tonic mixed: 4:15 PM

Miscellaneous

In his bookshelf explorations, Matthew went straight for the Harry Potter. That's my boy!

However, he's lucky his father didn't sell him to the gypsies last night. It was a particularly difficult bedtime (and the boys have not been sleeping well in general recently -- ugh!) Fortunately, Mattie redeemed himself by sleeping until 9 AM this morning. (Yes, yes, he was up at 4 AM for a bottle and briefly at 6 AM, but we'll take what we can get!)

Matthew has also moved up to the "Stage 3" baby food -- the ones with chunks of food instead of just puree. He's doing very well with it. This afternoon, though, he wanted to take the food off the spoon and eat it with his fingers. That's fine, all part of the learning experience, but definitely a big mess!

And Jamesie is back up to drinking as much formula as before his surgery, which is great. We can see the tops of his bottom two teeth poking out, too!

Grandmas

We sure enjoyed double-bonus grandma time, but all good things must come to an end (or at least, this one must) -- Grandma Linda went back up to see Cousin Daniel yesterday evening. Fortunately, Grandma Georgia will still be here for a while!

The past couple days, Matthew has been coming up to James and patting him on the head. And then James smiles at him. It's very sweet. I am quite impressed at how well Matthew does at being "gentle" with doggie and brother (we give him frequent reminders!) He still sometimes gets overexcited and pats harder than he should, but mostly he's very good (and he seems to have mostly given up the habit of grabbing a handful of Stanley's fur and pulling). I did not expect that he would understand "gentle" at this age -- go Matthew!

The second attempt at the "big boy tub" went much better than the first. Matthew didn't want to get in at first, but then we convinced him that it was okay, and he had a good time. He did look up a few times, and we weren't sure if he was still suspicious of the shower curtain, or if he was looking at the skylight.

Mattie and Jamesie are both waving these days, although not necessarily consistently and more often for hello than goodbye. Always something new!

Splish Splash

Mattie got to try his first "real people" food today -- some cooked potatoes. He seemed to like them! (Of course he did -- who wouldn't like Grandma Barr's home cooking?) And then he polished off half a jar of baby food carrots and baby food pears, so it was a good dinner for him!

He had another first that didn't go quite so well. He's been trying to climb out of the baby tub recently, so Mike and Grandma Georgia decided that he could have a bath in the big boy tub (the regular bathtub) tonight. Well, almost as soon as he got in, Mike leaned against the shower curtain just the wrong way and the entire curtain, rod, and liner came crashing down (bonking Mike on the head but not touching Mattie). Of course, that scared Matthew and he screamed and wanted out! We tried to put him back in once he'd calmed down, but he was having none of it. So, hopefully better luck next time!

Jamesie was up a lot last night, but had a lot of good playtime today. He also wanted to be held quite a bit. I think he's not so much in physical pain as he is still recovering from the stress of being in the hospital. Poor baby!

Unfortunately, he also has the terrible diaper rash that they warned us is common after an intestinal reconnection. We've been putting lots of cream on but it's not doing the job. So today we let him go diaper-free for a while since fresh air is supposed to help. (We put down an old sheet, and Mike made a little loincloth out of gauze and tape so that pee didn't go everywhere.) And we started using some of the barrier powder and liquid barrier film that we used to use with his ostomy bag to try to protect his skin. It still looks pretty bad, but at least he's not wailing every time we lay him down for a diaper change, so perhaps there's some progress.

James has been drinking more formula each day, and today he was almost back to where he was before the surgery (870 ml out of a goal of 900). He's still not doing as much at one time as he did before, but we're not pushing him (and in fact, we might be being a little too cautious with him, because the last couple days he threw up if he drank more than about 3 and a half oz at a time). But it seems like rapid and consistent progress, so we're very pleased.

Med Follies

Mike and I have a bet. UNC Patient Relations dropped off a card (form letter) on James's door inviting us to contact them with any concerns or compliments about our hospital stay. After waiting for almost two hours down in the hospital pharmacy for James's discharge prescriptions on Wednesday, I called their number -- and got an answering machine, which doesn't exactly scream excellent customer service. I requested that someone please explain to me why discharge prescriptions couldn't be electronically submitted by the doctors to the pharmacy, and then the pharmacy could either call the patient's room or alert the patient's nurse when the prescriptions were ready. That way, parents like me wouldn't have to leave their infants in a hospital room while they waited around downstairs (and heck, other people getting out of the hospital probably aren't eager to extend their stay in a pharmacy waiting room, either). I left our phone number and said I was looking forward to speaking with someone.

Mike wins the bet if they call any time before close of business tomorrow (Friday), and I win the bet if they call later than that or (as I expect) they never call. So far, I am winning (which of course means that hospital patients are losing).

And then down at the pharmacy, the pharmacist informed me that the insurance company was refusing to pay for the antibiotics because they alleged that the dose was too high. He said he'd have to "play a little chess with the computer" to see if he could get it to go through. I'm not sure if he did or not (because the cost was listed as the same as the co-pay), but it turned out the cost of the few milliliters of antibiotics that James needed came to a total of less than $20.

So, BCBS, let me get this straight. Once again you're wasting the time of highly trained medical professionals over what is essentially pocket change for your organization. But more importantly, do you really think that it is cost effective for you to 1) deny coverage for antibiotics and instead pay for a hospital readmission for post-surgical infection? Or 2) encourage your customers to stop in the middle of a course of antibiotics and thus encourage antibiotic resistant infections?

Is it possible to arrest a corporation for practicing medicine without a license?

Finally, because James's recent blood pressures have been good, James's nephrologist decided to try discontinuing his blood pressure medicine after surgery. The idea was that since they check blood pressure multiple times a day for hospital patients, this would give us a good sense of whether he still needed the medication or not. Well, in the two days after they discontinued the medication, we did not get a single accurate blood pressure reading. What I mean is that they'd get readings where the diastolic and systolic pressures were separated by a point, so it was obvious that they were not correct readings. Frustrating! The nurses said it was because he was moving around a lot, which is true as far as it goes, but there should still be a way to get some kind of good reading. (And on that topic, what genius decided that if a baby is moving, the automatic blood pressure cuff should JUST KEEP INFLATING until it's over 200 and the baby's foot is purple and he's screaming? Watching that makes MY blood pressure go through the roof, and I think I'm probably being a bad mom by resisting the urge to just rip the cuff off at that point.)

Anyhow, that one ended reasonably well because we got a blood pressure downstairs in the clinic as we were leaving that both seemed to be accurate and was in the normal range. Yay!

[Photo is the view from Jamesie's hospital room window.]

Our Jamesie is Home!!

James came home from the hospital this afternoon -- we are so happy!! And he's very happy, too -- he was in a good mood all the way home. I think he was getting as tired of that hospital room as we were! He was delighted to see his brother and doggie and play with his toys.

And he and Matthew are getting extra special bonus double grandma attention! What lucky boys.

Wednesday morning

It is Wednesday morning and we're hoping James goes home today. Early word is that he gained some weight again on Tuesday. That's what we needed to hear to allow James to come home. Tuesday night with James was OK. He slept from 9 until 2 am when we checked his vital signs, dosed him with some pain meds, and changed his diaper. He woke me up again at 4 AM with crying and the sounds of general unhappiness. I resorted to my first response, which is to hold him for a while in the hopes that this will pass and he will fall asleep. This didn't work so I immediately went to plan B -- food. He drank 2 ounces with gusto. I held him, tried to get a burp out of him and laid him back down in his crib. He didn't sound any happier so I offered him another 2 ounces, of which he drank 2/3rds. At this point it is 5 AM. He now seemed relatively happy, although he dribbled enough milk on my shoulder to cause me to change shirts. I put him in a new outfit (the old one had some milk spots and poop marks).

He look happy in his Buckeye top. He was smiling at me and clapping. Then he threw up. I picked him up to comfort him so he spit up on me. By now it is 5:30. The nurses changed his bedding while I held him...and minutes later he seemed happy and has remained so for the last hour. The first 2 pictures are after he threw up. The bottom picture is from Tuesday afternoon.

Tuesday

James gained 65 grams last night, so we're tentatively on track for him being able to come home tomorrow. Hooray! (Keep your fingers crossed for a good weight tomorrow!)

James had a pretty good day today. He wanted to be held a lot, and we obliged. :) He had a visit from his wonderful speech/feeding therapist, but unfortunately, it was just after he'd eaten and he was ready for a nap. She's going to try again tomorrow and hopefully see how he does with baby food.

He also had a visit from a country music singer, Jason Michael Carroll. We weren't familiar with his music, but he was a very nice guy and gave James a cute little sparkly board book. You know, you hear about celebrities or athletes going to the hospital to visit sick kids, but I never really expected to be the ones being visited!

Erin and Isaac left on Sunday. We are so grateful to them for being here -- they were a huge help. They took care of Matthew, went shopping, cooked us dinner, and just generally handled things so that we could focus on James -- they were awesome. Thanks, Erin and Isaac!!

Grandma Barr arrived in town yesterday evening. We were all delighted to see her, but especially Stanley, who got a morning walk today!

Mattie was a bit out of sorts yesterday evening and today; I think he's getting more teeth, and probably the disrupted schedule is catching up with him. (He was awake from 2:30 to 5 AM last night, which is not at all like him. I was not too thrilled about that! And then he stubbornly refused to take the morning nap that he clearly needed.) So, hopefully we can get him back on track soon.

Thank You, NC

From the Raleigh News-Observer:

Gov. Bev Perdue signed into law a bill that requires health insurance plans to cover hearing aids for people younger than 21.

Perdue was joined at the ceremony by Collin Tastet, 9, who has helped push the bill.

"This new law will help many of our kids and young adults have a better quality of life and stay ahead in school," Perdue said. "These kids who lobbied for this bill showed tremendous courage, and now more than ever we need strong, young leaders."

The bill requires that every benefit health plan must provide coverage up to $2,500 for one hearing aid per ear every three years.

Big Day in the Big House

James got his incision drain and catheter removed today, so it's much easier for him to move around -- yay! He was standing up in his crib when I arrived around noon.

He also got a new set of earmolds for his hearing aids (another yay!) and had a visit from the dietician, so it was quite a busy morning for him.

And he's definitely teething -- Mike felt one of his bottom teeth poking through. Hooray!!

He's doing very well with his recovery except for the weight loss -- the doctors won't spring him from the Big House until he shows some weight gain. He had a number of bottles today but mostly smaller volumes, which is not too surprising (after all, he eats less when he's just had a cold, and this is major surgery!) He'll be getting some food through his tube overnight and we'll see how things look tomorrow.

I understand why they want to make sure things are on track with his weight, but I'm disappointed that this would keep him in the hospital, since the current plan is "feed him a lot", which we can do at home. But presumably they have other options in their back pocket if that doesn't work so well -- we haven't asked about them and hopefully won't have to find out! (We weren't really expecting him to be released until sometime between Wednesday and Friday, so I guess this isn't really delaying things, but somehow it feels like it is!)

This hospital stay is in many ways less stressful than when the boys were in the NICU, but one good thing about the NICU is that most nights we could go home. On the 7th floor, the parents pretty much have to do 24-hour shifts -- and a night in the hospital is not a restful one, with nurses coming in every hour, rounds starting at the crack of dawn, and various baby-maintenance tasks in between. And that's not even counting the emotional toll of having to see your child in pain and the cognitive toll of helping to make treatment decisions and keeping up with all the relevant medical information. Mike has been doing the overnights while I've been home with Mattie, and it's really starting to wear him down. I don't understand how the hospital expects parents to keep this up for days on end -- you would think that for kids who have somewhat extended stays like this that there could be some slightly increased nursing attention or some other solution so that a parent could get more than 2-3 hours sleep.

On a lighter note, I had to laugh at the note from Mattie's babysitter today: "had a bath after lunch because he rubbed his spitup into his hair and pooped on his leg". Lovely! I figure this is equal opportunity for the twins -- if James has his poop stories shared on the blog, it's only fair to share one of Mattie's as well!

Cooped Up

There isn't an awful lot for a baby to do inside the crib, especially when he is recovering from surgery. Chewing on the metal bars of the crib is something out of the ordinary.


James is feeling well enough to roll over and sleep on his tummy.

Although he looks pretty comfortable here, he didn't get a full night of sleep. At his 4 caretime I could tell that he was hungry so after his diaper change I fed him some formula. He drank 3 ounces,a pretty good haul for James. But I was too hasty trying to put the remaining ounce through his g-tube because he threw up all over me and the floor when i was burping him. Next, he was weighed and had his blood pressure taken. I was very disappointed to see that he has lost a pound since he got to the hospital. Nonetheless, he seems to be rebounding -- he hasn't had a dose of pain medicine for 9 hours and he doesn't appear to be noticing.

Like Old Times

Tonight one of James's primary nurses from the NICU came by James's room for a quick visit, and so did one of the residents who took care of him and Matthew when they were in the NICU. It was so nice to see them again! Mattie was there visiting, and James was awake but fairly sedated from his meds.

And one of the nurses on the floor was Matthew and James's first babysitter. Mike had gotten to see her last night (she was helping out with taking care of James), but I had a chance to say hello to her and catch up a little bit this evening, which was great. We had taken Matthew down to the NICU to visit some of their primary nurses the other day, too -- seeing them is always a highlight of our hospital trips. (They manage to make even stressful days good ones for us!)

So, basically, we've been having a big hospital reunion -- a silver lining of James having to be back there!

James had a good day (pretty mellow, some good naps), but apparently an even better evening. After Matthew and I left, Mike said that James threw up right after he got a dose of one of his medicines -- but after that, it was like he was back to his old self again. He was rolling over, getting up on all fours in a crawling position, playing with his toys, and clapping. Wow! The only bad part about all that is that he he still has a drain coming from his incision and still has a catheter, so we worry about him pulling something with all this movement. (He wanted to chew on the little plastic container at the end of the incision drain, for instance.) Everything is taped down, but still, it's not really designed for a baby in motion. Hopefully both of those will be removed tomorrow morning, and then he'll just have the monitors.

Return to Milky

James is back to drinking formula! He didn't really want to drink overnight, so we were a little worried because one of the options on the table was to put an IV back in. (If they couldn't do it when he was well-hydrated, I don't know what kind of magic it would have taken to do it when he was dehydrated!) But then he had a good bottle of apple juice and water for Mike this morning, and when the doctors did their rounds, they said he could have formula -- yay! He's had a couple of bottles so far, and I bet he feels better now that he's getting some nutrition again.

James versus the IV

The dressing for the IV in James's hand got wet, so his nurse had to change it. (She wisely decided to do this just after giving his morphine dose.) She tried her best to keep the IV in, and we thought we had it, but then at the last minute it slipped out. The pediatric IV team doesn't work on weekends, so she called the regular IV team. They came and couldn't find a good spot to put one in. So she called the PICU (pediatric intensive care) and they sent someone up -- he tried and failed.

Fortunately, though, the docs decided that James could get his meds through his g-tube (directly into his stomach) instead of intravenously. So, he's been switched from morphine to oxycodone.

Of course, one issue is that he's not getting IV fluids any more, so he'll probably be hungry and thirsty soon. We'd been offering him bottles of pedialyte and pedialyte mixed with apple juice since early this afternoon, but he didn't want any of it. Finally this evening he drank about an ounce of apple juice mixed with water for me. If he can drink some more clear fluids and handles them okay, then they can start giving him formula again.

Once the IV drama was over, he's been pretty chilled out all afternoon and evening (no doubt helped by the meds!)

Code Brown

Great news!! James had a big poop this evening -- so it looks like his bowels are "waking up" and the systems are working as they should. We are very excited!! (Mike said that James seemed a lot more comfortable after that, too.) So, maybe some food or at least some clear liquids are on the horizon for him.

(The other good news of the evening is that they took the IV out of his neck. All of us are happy about that; it did not look too comfortable.)

This is James the morning after the big moment:

Popular

Our surgeon is on vacation next week, so a different surgeon is taking over to follow James's recovery. That's fine; the other surgeon was actually in the OR for part of the procedure, so he's familiar with his case. After explaining this, our surgeon remarked to Mike, "Everyone knows James." While this is reassuring in some ways, I'm also a little sad that my baby has such a wide circle of acquaintances among pediatric surgeons!

Yummy

Since James is too little to read the blog right now, I can post this picture of Mattie enjoying his lunch/facial of sweet potatoes and apple yogurt. (We are trying not to mention food or milky around James because he's not allowed to eat yet!)

We took Matthew to the nephrologist yesterday. When we first arrived, he was a bit out of sorts (probably because I had to wake him up from a nap to bring him to the appointment) -- so the initial blood pressure was on the high side. (And probably half the hospital could hear him yelling when we tried to weigh him.) We were disappointed, but when his doctor took it manually once he'd calmed down, it was right in the normal range. So, she said that we could finish out the bottle of meds that we had (which will only take another couple of days), and then have his blood pressure rechecked in a week or so. If it's normal, then he's all done with the meds (and the nephrology followups). Hooray!! Our nephrologist is awesome, but we'll be delighted to "graduate" from her practice. (And I would be thrilled to have one less reason to have to go to the hospital pharmacy.) So, keep your fingers crossed for good pressures!

Mike hadn't left the hospital since Tuesday night, so today I sent him out for lunch with Uncle Isaac, Auntie Erin, and Matthew. Mike claims he did not let Mattie try the espresso part of this dessert!

Friday night James slept well, and so did dad. The surgeon stopped by this morning and said James looked good and was on course. He took out the NG tube and peeled some tape away from one of the incisions. James will be given some antibiotics to ward off any incipient infection that may or may not be present in the old ostomy location. Right now James is sleeping comfortably following his morning meds.

(Photo is from Wednesday morning before surgery).

Good night

James is sleeping more comfortably tonight than he was last night. So far, anyway.
The red light on his hand measures his pulse and blood oxygen levels. The tape on his face is holding the NG tube in place.

Very Relaxed

This is a very relaxed baby! This is around 8:30 PM, shortly after he had received a dose of morphine. They've adjusted his dosage tonight (around 2 am) because he was having periods of breakthrough pain, which means peaks of pain that occur as the morphine wears off. But at this moment (2:15 am) he is resting comfortably once again. A few hours ago we removed the wraps around his arms (the thing that looks like a cast). They are supposed to prevent him from grabbing and pulling at his tubes, but they mainly succeeded in making him very uncomfortable and squirmy.

All is Well

We're (finally) back up in the room -- everything went well with the surgery. No more ostomy -- hooray!!

We were in the recovery room for a long time and James is mostly settled, but he seems to still be in a little bit of discomfort -- he'll probably be getting another dose of morphine soon. He's surprisingly active for a kid just out of surgery. He's mostly had his eyes closed, but opened them to say hello to us. He rolled over onto his tummy, which seems like it would be very painful given all the incisions there, but the nurse said that if that's where wants to be, then it isn't hurting him. He's got arm restraints on him ("no no"s) to keep him from pulling out the many tubes he has attached, but they're probably also making it hard for him to get comfortable.

So, long day but a successful outcome.

Meanwhile, Back at the Ranch

We hear that Matthew is living the life of Riley, quite pleased to have three adults (Auntie Erin, Uncle Isaac, and babysitter Nicole) and three dogs attending to him. Hopefully he won't get too used to this level of staffing!

Still Waiting

Our nurse just called down to the recovery room (at about 5 PM), and they had James on their list (for being out of the OR) for around 6:30 PM. So, we have more of this stressful waiting, but it's at least a little reassuring to know that it's not unexpected that he's still down there.

Cleared for Take-down

[Ostomy closure surgery is also sometimes called a take-down. To me that always brings to mind some kind of drug bust, as if James has joined the SWAT team.]

James had a pretty good night, and was in fairly good spirits this morning, given that he hadn't had anything to eat. They took him down to the OR a bit before noon. At one point someone mentioned that this would be a 2-3 hour surgery (I think not counting the anesthesia prep time which may also approach an hour), so I'm expecting more like five hours -- the surgical time estimates we've been given in the past have always been significant underestimates.

James was starting to get a little fussy in the pre-op room, and the anesthesiologist gave him the first calming-down drug through his IV. He went from screaming to smiles in the course of about five seconds. His head was sort of lolling around like he was a happy drunk, and then his eyes started to drift closed. It was very cute. (I asked if we could get some of that stuff for his brother's naptime, but no dice.)