Bedtime stories

A couple weeks ago we asked my mom to send us some of my paperback childhood books, just a couple. Of course, not one to under-do anything (see the amount of food she serves at any party ever), she shipped somewhere around 15 lbs of reading material.

Because there isn't much privacy in the NICU, especially in Fairfax, where babies are lined up against the wall like ducks, it took me a while to get up the nerve to sing to him. But everyone tells you to do it, so I did. I've run out of lullabies, though (you can only sing The River Lullaby and Evening Prayer so many times), and expect that this weekend I'll be downloading some Disney tunes to refresh my memory and bulk up my stock.

In the meantime, we've started reading. He seems to like it a lot, or so we believe based on his steady vitals and calm demeanor as we regale him with tales of Miss Nelson, Corduroy and the witch "next door."

Today we also found out that they want to try him, on donor breast milk. He's had some loose, green (I know, TMI) stools the last few days as they have increased his feeds, and while all other signs are good (i.e., soft abdomen, no fever, etc.) they want to see whether my breast milk is causing him problems. Everything I've read says that green and loose are really NBD in the early stages (see this page, this page or this page ... I could go on, but I'm guessing you'll just skip all those sites and take my word). It could be that he's not getting enough hind milk (the milk from the end of a feed) or maybe that he's allergic to dairy [in breast milk]. But it also could be diarrhea. All told, I'm feeling defensive and discouraged since right now, providing that is one of the few things this new mom gets to do.

I know that these doctors make knowing poo their business and have good reasons for wanting to try something else. This afternoon I gave consent for them to try donor milk, and they'll start him on it tomorrow night. They'll see whether he gets better over the course of a few days, and then they'll switch him back to mine to see whether he can tolerate it at that point. If he cannot, they'll run some tests on mine to see if they can pinpoint the cause. All I can say is that if they figure out it's all my ice cream consumption I am -- sigh -- willing to drop the habit!

Little Guy, little change

It's always easiest to write blog entries on the days we leave the hospital feeling as though Calder "looks good." I'm not exactly sure how Kraemer and I make this determination, since lately although a nurse may assert he's had a "good day," I might still leave deflated. And sometimes, although it may seem his uphill battle has grown taller, I leave invigorated, knowing he's up to the challenge. These days, the smallest change in either direction makes the biggest difference to me, and logic doesn't always play a part in my emotions.

So today is one of the easy days. There's been no ground-breaking news, but as Kraemer noted on Monday, Calder finally came down a couple points in pressure on his ventilator over the weekend. Although his blood gases haven't looked good enough the last couple of days to bring the settings down further, a chest x-ray taken Tuesday after he pulled out his feeding tube (yes, he pulled out another tube. At least we know he doesn't lack a good grip.) showed slightly more inflation than the previous x-ray. And his blood gas wasn't that bad; in fact his CO2 was a few points lower. As we sat by his isolette last night, the nurse would wean him slowly from his oxygen as we talked to him after it had needed a bump-up during his hands-on care (diaper, oral care, temperature, etc.). He'd de-sat initially, but slowly his saturation always climbed back up into the 90s, so that by the time we left his oxygen level need was back to 44 (room temp is 21 percent). He looked alert but comfortable. All very encouraging.

Calder had his first eye exam this morning, where they're checking for retinopathy of prematurity (ROP). He was diagnosed as Stage Zero, which means that there was no ROP present at the time. He had another head scan a few days back, his fourth, which once again came back normal. I hold my breath with each test, but so far, so good.

They've taken out his peripheral arterial line (PAL), since his blood pressure was doing okay, and otherwise it was just one more line that could get infected. Of course, this means they're back to pricking his poor little heels. Ouch! But he takes it like a trooper.

He's still seemingly handling his feeds okay, so they've upped his intake to 3 mls/hour. This means he's still not back to the level he was receiving at Alexandria, but he's close, and continues to make pretty quick progress in this area.

We also had a visit from Grandma Anderson and Aunt Kristen this weekend! (I know Grandpa Anderson and Aunt Corinne were devastated they couldn't come again - we'll see you guys next time!) Given the limit of four guests for the duration of our stay, poor Krist got to know the waiting room pretty well. And while I'm pretty sure they left exhausted, after a long car trip, helping clean our apartment and dropping off meals, I felt more relaxed by Sunday evening than I had in awhile. They're the best. Guess that's what family's for.

Lunch break from hospital at Great Falls

Gotta keep up my milk supply. :)

Shout out to my PEEPs

We, the parents, have been trying to be patient post surgery with our expectations for Calder's improvement. Apparently we are the product of the 30-second news cycle because we hate waiting. Calder rewarded our suffering by going down on his ventilator settings for the first time in three weeks. Prior to surgery his PEEP was at 17 and his respiratory rate was at 55. Thursday (surgery +3) they were able to bring his respiratory rate down to 50.  On Sunday morning Calder made his first progress by going down to 16.  We left from our morning visit and returned in the afternoon to be greeted by yet another reduction in settings. The little man was rocking a PEEP of 15.

While they are reducing his settings they are also weening him off of his fentanyl, which they started him on about a week after birth to calm him down because he didn't like the tube in his throat. Apparently, opiates are not an easy habit to kick so Calder tends to squirm a bit now.

The doctors have a goal of extubating Calder by the end of this week or next but they need his PEEP to get down to at least 12 for him to have a shot at it. Our impatience isn't unfounded. The ventilator damages his lungs because, as a preemie, parts of his lungs are mature and supple and other alveoli  are immature and stiff. The ventilator can't discriminate and simply inflates his entire lungs to the set pressure. Since each little alveoli is expanding at a different rate, some don't expand at all and some are over-expanded, leading to chronic lung disease (CLD). Since the severity of CLD increases the longer he is on the vent, the doctors will eventually reach a point where they determine that the ventilator is doing more harm than good. To prevent that scenario from persisting, they will then probably use Decadron, a steroid that works miracles on the lungs but which can lead to horrible side effects, brain damage among them.  Now that Calder's come down 2 PEEPs in a day its tough to revert back to being patient. Maybe we can get 1 a day. 

Post-Op

Surgery prep. Notice blue cap!

Last night, after a midnight rendezvous with my pump (and why not: it's World Breastfeeding Week!), I couldn't get back to sleep. I lay awake thinking about Calder, wondering how he was doing, what he was doing, who he was with (were the nurses being watchful?) and when he'd be home, thinking about just how nerve-wracking this having a child business was, realizing then that I'd probably still be asking the same questions sometime near the middle of the night when this guy is 16. At least for now I can be certain about where he is. :)

His recovery from the surgery has been slow, but we'd been forewarned he would fall "ill" after the operation. As the doctors predicted, on Monday night his blood pressure dropped, his ventilator support requirements increased and his body responded to the surgery by retaining lots of liquid, making him appear puffy and swollen. But Calder is making plenty of great progress, and I shouldn't shortchange him just because I'm impatient! He was off his blood pressure medication, dopamine, entirely by this afternoon. They've been able to wean him back down to 1mc/kg/hour on the fentanyl from 2.5, so back down to the level he has been on essentially since birth. He has received at least two blood transfusions since the surgery -- the first because his hematocrit was low (too few red blood cells) and the second because he was acidosic (too little expulsion of carbon dioxide) -- and both times the transfusions achieved their intended effects. While he was slow to wet his diaper, by today he was peeing and pooing up a storm, which we like. His ventilator pressures remain the same after having gone up on them during and immediately following the surgery, but his Os (oxygen) have come down from a high of 75 after the surgery to only 44. (Room air is  21, so he still has a bit of a ways to go, and he was in the 30s pre-surgery, but 44 is great progress.) They were able to remove the tube into his stomach that was removing extra air and bile since there was so little of it. And he's been very alert, eyeing us with interest and swinging his arms and legs around like he's on the dance floor.

Hospital break

He now weighs 1130 grams, a whopping 2.5 lbs!!

Also, just prior to surgery they reintubated him with a size 3 tube rather than a size 2, so no more of the sad little squeaking that always made me cringe knowing the tube wasn't fitting quite right.

Feeling puffy

I was also reminded that we really need to leave a camera at his isolette so that the nurses can capture the little moments we miss. When we showed up today the nurse exclaimed at his cuteness (admittedly, they probably do that to everyone) and then went on to describe how her efforts to adjust his feeding tube were delayed by his constantly licking her fingers. Sounds cute to me.

All in all, he's doing well for the time being, and we probably have a few more days until I can legitimately worry about his progress.

In this time, everyone has been so wonderfully, incredibly supportive. I know I've said it before here, and I'm not very good at being sentimental, but I truly cannot put into words how touched Kraemer and I are by what I have to consider an outpouring of support from friends and family. I cannot imagine how much more difficult this journey would be without you. As Kraemer said recently, it's so reassuring to know we've brought Calder into a world full of such warm, caring folks. I wish I could hug every one of you!

Titanium

Hope the little guy likes Sia cause he's Ti ta ni um. Surgery was a success! At least the cardiologist and thoracic surgeon both said that it should definitely help Calder on his road to recovery, and Taryn and I have never heard a doctor in the NICU speak in absolute terms, and have definitely never had two doctors independently corroborate something. Relieving to say the least. In essence they made an incision in his back, spread his ribs, deflated a lung, moved it over and put a titanium clip on the duct between the aorta and his pulmonary artery...then pinched said clip until it was closed, but not all the way closed where it might cut the vessels.  Finally, they reversed everything and sealed the wound with superglue.  TA DA, one of the easiest heart surgeries in the book. Makes me glad I'm not a heart surgeon.

As new-age parents Taryn and I don't care if Calder's room is pink or blue or any of the other gender stereotypes.  That said, it's way cooler for your son to have a big scar than your daughter. I figure Calder should get some quality time out of showing this beaut off in the future.

The hardest part of the day was when Taryn spotted the surgeon walking down the hall and said oh no he's not smiling, something went wrong. It was a long minute (and a long hall and a slow surgeon) but all's well, heart surgeons just don't smile a lot...in my book they get a free pass.

Clear cut

After a lot of being in limbo and a lot of uncertainty, the cardiologist called me this morning with some definitive news: Calder needs the surgery.

The doctor tells us that while they don't always see improvement after PDA surgery -- even though that's always the goal -- he expects that given the signs, Calder will improve rapidly after the ligation. (That is, after a period of being sick ... apparently, most babies get pretty ill immediately following the operation.)

Because Calder's surgery is "elective" and "non-emergent," his surgery is not a priority surgery for the day. Instead, he is slated for the second tranche of surgeries, which only get started after the first tranche wraps up. And that could take some time, because the morning surgeries are the real whoppers. We expect that Calder will go in around 2 or 3 pm today, but he may also get pushed until tomorrow. The surgery should take an hour. (I'm starting to think I need a Twitter feed to keep you all up with this little man's many updates!)

I have to admit, I'm basically scared out of my gourd for him since he's so little (and so cute!), but I believe this is the best route.

We'll do our best to keep you all posted!

Oh, what a pretty color yellow

Inova Fairfax, his new corner

When we arrived at Fairfax from Alexandria we were shown how to put on isolation gowns and glove up. Simply a precautionary measure for babies transferring in from other hospitals.  They took culture samples from Calder's skin and his nose and sent them off to the lab for screening...all routine.  I now know that I should pay much more attention to movies because they lay out in easy to comprehend fashion the way the world works.  If a doctor tells you something is routine, and makes you put on a silly gown....you will be QUARANTINED.  Fortunately nobody is wearing the outbreak style face masks yet: Calder simply has a healthy colony of Staphylococcus Aureus, a name worthy to lead a gladiator rebellion.

There are a wide variety of staph. The MRSA (super-bug) variety are the ones that hospitals freak out about and nobody wants.  Calder's is not MRSA but good old run-o-the-mill variety. Run-o-the-mill staph is common (almost a a third of all grownups have staph on their skin) but it can become problematic if it gets into open wounds or if you have an immunodeficiency -- like preemies do -- and it gets into your lungs. Calder is not symptomatic for the negative effects of staph: his hermatocrit is low, he doesn't have a high number white blood cells (which you would expect to increase to fight infection), his esophagus is not inflamed, and they are not getting a large amount of secretions when they suction his breathing tube. They are putting antibiotic ointment on his heel, which has an IV chemical burn, and he's getting the same ointment dabbed inside his nose to clear up his sinuses. The ointment is just like Neosporin ... which I swore I would not use on my kids because it's sissy juice. Calder has me breaking a lot of my preconceived parenting rules. Because Calder is still a surgery candidate they are also giving him an IV antibiotic, which they hope will reduce the staph count on his skin and thus reduce the chance of an infection if they have to do surgery.

So far, they've found the staph both on his skin (in his wound), in his mucous and on his ET tube. They sent another culture to the lab this morning to see whether it's in his blood.

For the grownups in the room, his staph means that we get to wear yellow gowns and gloves for the rest of the time that he's in the NICU.  Not too bad, but with limited baby interaction already the loss of skin contact is a bit of a bummer.  But what a pretty color yellow.

Taryn got to do a bit of mouth care on the little guy today...very nice technique. (video to come, if Blogger let's us!)

Thursday's echo showed that his PDA had increased in size from 1.7 to about 3. But because he is still clinically "stable," they aren't rushing to perform the ligation. They also want to see whether the antibiotics have any effect; if an infection is present, it could be causing dilation of blood vessels as well, so taking care of any infection may also have a positive effect on the PDA. To give the antibiotics time to work, the next echo is scheduled for Monday.