Health Update

We've had a busy week here, doctor-wise.

On Monday, as I've already said, we got Peeper's weight checked and saw that she's still gaining nicely since she's been breastfeeding exclusively.

On Tuesday, we saw the metabolic specialist at the Children's Hospital in BigCity, and yesterday we saw the cardiologist in CapitalCity.

Monday evening, I was sitting around thinking about what a pain in the ass it was going to be to drive to CapitalCity on Tuesday morning, catch the train to BigCity, have the appointment, train back to CapitalCity and drive home - just to turn around and go back to CapitalCity the next morning for the other appointment.

Then, I had a brainstorm!

I was waiting for Peeper to allow me the use of both hands at the same time, so I could email Shrike about my idea, when the phone rang and it was her say, "Mom tells me that they're calling for nasty weather tomorrow. What should we do?"

"Well, it's funny you should ask. . . ."

So, we spent the night in CapitalCity, which worked out great, because the weather was mostly okay Tuesday morning on our way there, yucky that evening while we were safe and snug in a hotel, and fine yesterday on our way home.

To find the hotel, I went to the Amtrak website and searched for ones close to our station. I chose the one that was th best combination of close, cheap, and a chain that I recognized (Econolodge).

As luck would have it, it's about a block and half from the cardiologist's office . . . where we usually see him . . . but not where our appointment yesterday was.

Of course.

Yesterday, we were seeing him at the office that's twenty minutes down the road, farther from home.

The trip was stressful, but we managed. This time, we had to take a cab to the hospital, because it was cold and sleeting / snowing, so we really didn't want to make the eight-block walk with little Peeper.

(Although, for me, it might have still been better than making the same walk in decent weather, at eleven days post-partum!)

Peeper continues to pretty much shut down and go to sleep when out in public, which makes her fairly easy to travel with, but it's not so good for the eating.

I tried, a few times, to nurse her in fairly publicish, busyish places (the train, the train station) and she was really having none of it.

(Of course, she also seemed to be pooping at the time, which really interferes with her desire to settle down and eat, too.)

When we finished her appointment, we went to the lactation room (same one where I'd pumped three times during our last visit) and she was happy to nurse for thirty minutes, when it was nice and quiet and just the three of us.

She was also fine once we got to the hotel (several times, over the course of the evening/night/morning) and nursed great in the car after we finished with the cardiologist.

I took the pump along, and used it once in the wee hours of the morning, when I was awake and full, but she was asleep and, evidently, also full.

I also ducked into bathrooms to hand-express a few times, just enough to get some relief, especially after she's acted like she might nurse, got my milk all let-down and then quit and went to sleep.

("Fine," I told her, "if you don't want it, I'll just feed it to the choo-choo train!")

I suspect we'll have a similar experience when we fly to Texas next week.

(Next week!!!)

But, about the medical stuff . . . .

The metabolic doc still says that the most likely scenario, by far, is that Peeper just had "transient neonatal tyrosinemia" and we'll see that her tyrosine level has come down, and it will all be a big nevermind.

If it's gone up, it would mean she has Tyrosinemia Type II, which is a genetic metabolic disorder, and would have to be managed throughout her life.

If not controlled, tyrosine builds up in the corneas and causes eye problems, but it's (relatively) easily managed, with a low-protein diet.

For now, that would mean feeding her a special tyrosine-free formula, in addition to nursing. (Formula first, then breastmilk.)

I know that, in the grand scheme, that would be a very small part of the management of the disease, over the course of her life but, given all that we've been through to get her to the point that she's finally nursing (exclusively!) that would really add insult to injury and I think would have a very difficult time with it.

But, that's all very unlikely, because it's a very rare disease, and we're almost certainly going to find out that she's just fine.

They were hoping to get the lab results by the end of the day, and they should call us about it tomorrow. In fact, they said that if we don't hear from them by the end of the day tomorrow, we should call them.

Of course, no matter how reassuring the doctor was, I have still managed to get myself worked up into a state about it, and I won't relax until we've gotten an answer.

Of course, again, visiting the Children's Hospital, and seeing the kids and families whom they serve really helped to put things into perspective for us.

Even if Peeper does have Tyrosinemia Type II, it's something that's controllable, and something that's not incredibly awful even if it's not controlled, and there are much, much, much worse things that could be wrong with our kid.

One bright little moment from the visit there - We saw the same attending physician and fellow that we saw before, plus a nurse (who will be the one to call us with the lab results, I think).

Last time, both doctors told us how. . .

Breaking News:
The nurse from Children's Hospital just called. They don't have the blood back yet, but her urine is normal and "shows no tyrosine metabolites" which is a very good sign.

She said, "It looks like she had the transient," and when I asked if this is an indication that they would expect we'll see her blood tyrosine level down, she said, "Most likely."

She also said, "We usually don't call with the results in dribs and drabs, but knew you'd want to know about this. You can expect to hear back from me around this time tomorrow about the blood."

Of course, I still won't relax until we get the blood back, but that does make me feel a little better.

So, as I was saying . . . .

Last time, both doctors told us how beautiful Peeper is and such, and the attending probably said it three or four times before he even started examining her.

Of course, we think so, but we still always have to wonder if they say that to all the parents.

This time, though, as he was looking at her, he turned to the nurse (who was just meeting her for the first time) and said, "See what I mean? I told you she's adorable!"

Which means that he a> remembered how adorable she is from over a month ago and b> was talking about how adorable she is, before we arrived.

Aw, shucks.

Her appointment with the cardiologist yesterday went pretty well, too. He said that her breathing is better (not as rapid), but he did increase her medication again (but we knew that would happen over the first couple of months).

We told him that she seems a bit congested (a bit of snot in her nose, and her chest is a little rattley), but I seem to have (knock wood) fought off the cold that I was fearing last week, and it doesn't seem that she's gotten it either.

He didn't really seem concerned at all about any of that, which is good.

We'll see him on Tuesday, and again on January 7. He said that he'll probably do another echo at one of those visits, to see if the hole is starting to get any smaller yet.

It seemed to be iffy whether we can expect to see any changes yet at this point. Obviously, it's possible, or he wouldn't bother with the echo, but I got the impression that it's not necesarily a bad thing if it's not changed yet.

I did ask how long we wait for it to start shrinking before we have to look at surgical solutions, and he said that if he's seeing restriction by four months (end of February) that he'd "drag [his] feet on surgery" because he'd expect it to continue to close up more, but if there's no change (or no significant change?) by that point, then "we'll have to close it."

So, while the thought of her possibly having open-heart surgery within the next three months is
pretty terrifying, I was actually kind of relieved to hear that we're looking at a resolution (surgical or, hopefully, otherwise) within the next few months, rather than within the next few years.

Of course, we are hoping that the hole will close (or at least shrink) on its own, because we certainly don't want her to need surgery, but if it has to happen, I think we'd just as soon it all happen sooner rather than later, and then we'll be done with this.

Of course, at the moment, the #1 item on our Christmas Wish List is to get the all-clear on the metabolic stuff tomorrow.

Then, if we could see a good weight gain at her two-month (!) check-up on Monday, and have an echo on Tuesday, showing some shrinkage of the hole in her heart, that would just be the best gift imaginable.

(Of course, just having her is already the best gift imaginable!)

Once again, we sure would appreciate your thoughts, prayers, positive energy, good vibes, and normal-tyrosine-having-weight-gaining-heart-hole-closing-healthy-Peeper mojo, as we continue to deal with the questions and fears and uncertainty that seem to be the norm for this kid.