Health Update

Peeper's doing very well, overall, but we're continuing to monitor and manage some things.

Here's an update on the concerns that I discussed last month:

Issue 1 - Feeding / Growth
Peeper weighed in at 6 lbs 1.5 ounces on Thursday, which her pediatrician was very happy with.

Some of her preemie-sized footie-outfits are starting to seem a bit small on her, length-wise, and a couple are even looking like they might be getting a little snug around.

I think we'd better put her in that one little preemie Christmas outfit every chance we get, before she out grows it!.

I think it's also time to move from preemie diapers ("up to 6 pounds") to the newborn size. The newborns seem huge on her, but she's started to get red marks on her little thighs from the elastic of the preemies.

Most of the newborn outfits are still pretty darn big, too, so her wardrobe may be kind of hinky for a while.

As to the feeding, don't tell Peeper I told you this, because she has a habit of making a liar of me every time I brag on her, but we've had a couple of very encouraging days lately, on the breastfeeding front.

After considering the pros and cons, I tried nursing her using a nipple shield, and so far, she seems to be loving it.

From Tuesday evening through Thursday, she nursed with the shield about a dozen times, and yesterday - holy crow!

Basically, from 3:30 to 11:30 p.m. we didn't do anything but nurse, sleep for a bit, fuss around, diaper change, poop (Yes, in that order. Of course.), switch sides, lather/rinse/repeat.

Yes, you read those times right. Eight hours.

In that time, she was happy (except when poopy/gassy) and I was fine, despite going ten hours without pumping.

(By the time Shrike got home, Peeper had been asleep and not nursing for about an hour and a half, and I was ready to pump, but I was fine until then.)

So, if her tummy was full and my breasts weren't, that's got to be a really good sign.

She had a bit less than an ounce from a bottle right before we all went to bed, because she was hungry but had worked herself up into such a state that she couldn't settle down enough to latch on and nurse, but once she was calm and not so hungry, Shrike handed her off to me and she was happy to nurse.

Other than that, and another ounce or so that Shrike gave her in the middle of the night, she's not had a bottle in about the last eighteen hours or so.

I am, of course, concerned about whether she's getting enough milk (especially using the nipple shield, which makes it harder) so I'm thinking we'll try to get an appointment for another weight check next week I just made an appointment for another weight check on Tuesday.

The pediatrician's office probably already thinks I'm completely neurotic anyway, so what the hell.

She is peeing and pooping like normal, so far, which is good, because a reduction in output would be our first sign if her input had dropped.

Of course, a couple of great days doesn't make everything "all better" yet, and I'm sure we've still got a lot of pumping and bottles ahead of us, and then we'll have to deal with weaning her from the shield to the bare breast, but it's a huge step forward and incredibly encouraging.

I'm trying to be cautiously optimistic, because she's taunted me before, with a good day here and there, but I really think we might finally be on the right track here.

Issue 2 - Jaundice
At her one-month check-up last week, the doctor said that Peeper's still (again?) a little jaundiced, and a check of her bilirubin confirmed that.

However, she said that it's just breastmilk jaundice, which is normal in a baby that's getting exclusively breastmilk, and is nothing to be concerned about or that needs to be fixed.

We'll recheck her bilirubin level next week.

Issue 3 - Temperature Fluctuations
She's all good on this one.

Issue 4 - Heart Murmur
She's been seeing her cardiologist pretty much weekly (although, now it's biweekly!) and he's happy with her growth and eating, but has her on some medications. She's taking Lasix and Captopril to reduce the amount of blood volume going through her lungs, and help slow down her breathing a bit.

She started the Lasix three weeks ago, a week later he increased it and added Captopril and this week, he increased the Captopril.

These increases are to be expected, and don't mean that she's "getting worse." The thing is that, over the first couple of months of life, as the lungs expand and mature, the pressure in the right ventricle decreases, which causes more blood to backflow from the left ventricle, and then go to the lungs.

So, it seems to me that the need to increase the meds is actually a sign that her lungs are maturing and developing as they should.

A few weeks ago I asked the doctor when we can hope to start seeing some shrinkage of the hole and an overall improvement and he said it would be a matter of months before we'd expect that.

So, we're in for quite a haul with the medications and the doctor's visits, but it's something that's quite managable at this point, and should go away within a couple of years.


Issue 5 - Questionable Metabolic Testing
We finally got Peeper's urine tests back last week, and everything looks normal with that, and with her liver functions, so she does not have Tyrosinemia Type I, which is great to hear.

As we've known for a couple of weeks, her blood tyrosine level was still elevated when the testing was done (at 11 days old).

As the doctor told us then, by far the most likely reason is just the "transient neonatal tyrosinemia," so it needs to be checked "in a few weeks" to be sure that the levels are going down.

It's been a few weeks now, so it's time to do that. We thought we'd be able to do the follow-up testing here, but the doctor wants us to go back to the Children's Hospital and do it at their lab.

I think it's a combination of "our lab is better than any other" and the fact that things might vary from one lab to another, so the most accurate comparison would be to do both tests at the same lab.

Also, it took three and a half weeks to get the urine back when we did it here, and it will only be a few days there.

We have an appointment on December 16, and they've asked us to try to collect the urine beforehand, so we don't have to go through that debacle again. If we can't get it the day before, we'll just have then catheterize her there. We hate that idea, but it's got to be done. At least they will have teeny-tiny preemie-sized catheters.

Mostly this is just a check to confirm that her blood tyrosine levels are dropping, which we would expect from the transient tyrosinemia, which we're almost certain is what's going on.

There is one other genetic metabolic disease that's a possibility - Tyrosinemia Type II, but from what I gathered, is even less common than Type I, therefore even less likely that she'd have it.

If she did have that, it's "easily controlled" with a low-protein diet.

If not controlled, the main thing it does is to cause a build up of something or other than affects the eyes, causing vision problems.

When I pressed him about other possible problems, like developmental delays, he said that, "Yes, sometimes there are some learning disabilities," but then reiterated that a> that's only if it's not controlled, and it would be and b> it's very, very unlikely that she has it.


In Summary
It has not been an easy five and a half weeks, but Peeper is doing quite well, overall, and most of her prematurity issues are either resolved or seem to be well on their way to resolution.

If all goes well with the follow-up testing of the metabolic stuff (which we expect it will) then the only real concern is the heart murmur, which we're on top of, and expect to be resolved without any intervention.

Now, if we can just keep her from springing anything new on us for a while. . . .