All Better Now!

Today was Peeper's annual biannual check-up with the cardiologist and it went great!

Not only did everything look and sound just perfect, but she was also incredibly cooperative and lay perfectly still for her echocardiogram.

Which, by the way, she knows how to say. The sonographer was quite impressed.

That sonographer was not one the same one who did her echo last year, but she's actually the one who did her very first (postnatal) echo, when she was five days old. She couldn't get over how much she's grown. Nor can we.

When the doctor was checking her out, I asked her to "tell Doctor about your scar" which (with the tiniest bit of prompting) goes something like this:

"When I was a baby, I had two holes in my heart. Then I had an operation, and I'm all better now."

His response was, "You are all better, honey!"

And, best of all, we don't have to go back for two years!

We told him about our baby #2 plans and asked whether we should be concerned about the possibility of a full sibling of Peeper's also having cardiac issues.

He said not especially, but that it would probably be a good idea for Shrike to be followed by a perinatalogist (which she will be anyway, although hopefully not as closely and Peeper and I were!) and to have a fetal echo about midway through the pregnancy, attended by both the perinatologist and a pediatric cardiologist who specializes in such things (not him, but his partner).

Of course, Peeper had one of those at twenty-five weeks, and it told us we were in the clear, but even though we won't believe an "all okay" report, at least it would be good to know that there are no huge glaring concerns.

Interestingly, he said that Peeper's ASD (the upper hole) was quite small and those are hard to diagnose prenatally, but that her VSD (the lower hole) was "quite large" and he seemed to be surprised that it wasn't diagnosed.

In retrospect, though, I am very glad that it wasn't, because as much of a basket case as I was all the way through my pregnancy, I can't imagine how much worse I might have been if I'd know that.

Anyway, he specifically recommended that we go with the perinatalogists from CapitalCity who opened an office in OurTown about a year ago, because they work pretty closely with them.

(This is the doctor that DoulaK saw when she was pregnant with BabyK. I think they opened the office here in time for her last appointment. We were already planning to go with them, because it will be much more convenient than the one we saw before.)

Of course, we have to get that baby made, first.

But in the meantime, the baby we do have has a perfect heart!

Daily Peep: Surgiversary

It's been one year since Peeper's open-heart surgery.

Let's check on her zipper.





Beats the hell outta this, huh?

Cardiologist Report

Peeper had her (almost) one-year post-op check-up with the cardiologist today, and it went great!

He said that, "She sounds great. If I were listening with my eyes closed (not seeing her surgical scar) I wouldn't know she'd ever had a problem. It just doesn't get much more perfect than that."

We fully expected that everything would be fine - after all, she's had three well-baby checks and a few not-so-well-baby appointments since her last visit with him, and the pediatricians have always said she sounds great - but, again, it was very nice to hear it officially from the expert.

They did an echocardiogram, and was great too - her heart function is good, her valves look good, and there's no sign of any scar tissue building up where the repairs were made.

We'll go back in a year, and assuming all is well, I think a year after that and then every two years for a while.

He said that very rarely the scar tissue can cause issues down the road (in adulthood) so she will need to be followed by a cardiologist every few years for her entire life, but that she really is not at any increased risk for cardiac issues, even as an adult, even in old age.

He also said that she can play contact sports if she wants. Somewhere along the line, I thought I had read that it's not recommended after having the sternum cut open, but he said that it's no problem. Maybe it depends on how old the kid is at the time of the surgery?

That's probably not as big an issue for a petite girl like Peeper as it might be for a big ol' boy, but you never know. I played a lot of full-contact, no-pads, "sandlot" (neighbor's front yard) football as a kid, and Shrike took judo when she was in high school.

Of course, we're thrilled about what the cardiologist had to say, and we were also very happy with how Peeper handled the echo.

We took some books and toys, but didn't even get them out of the bag. The tech put on a DVD of The Wiggles (Wow. The Wiggles are weird.) but she didn't pay a lot of attention to that.

We started out with me laying on the table next to her, and didn't get very far before I figured I'd better pull out the big guns, so to speak, because she was trying to unhook the EKG leads and grab the ultrasound transducer out of the tech's hand.

So, she nursed through most of the exam, and other than "helping" a bit, and seriously protesting during the part where she was pressing into her tummy, to see her aorta, she pretty much just concentrated on her goody and let the tech do her job.

And in the last few minutes, she actually dozed off, and slept through the doctor coming back in to talk with us some more, me zipping up her jacket (We had her in pants and her open jacket for the echo, so she wouldn't be cold; didn't bother re-dressing her properly to come home.) and then awkwardly climbing down from the table, with her still latched!

Silly girl.

Cardio Report - 3.5 Months Post-Op

15 lb 13oz
Echo perfect.
Back in 9 months.

"Normal"

As I was reading this post by Amalah the other day, I couldn't quite figure out what it was about the nothing-but-a-BumGenuis-diaper photos of baby Ezra that looked so right-but-not-quite-right to me.

At first, I thought it was just because it was a photo of a baby who is not Peeper in the same "outfit" that Peeper is usually wearing these days, but then I thought, "No, something is missing . . . ."

The scar.

I am not used to seeing an infant's naked chest without a scar down the middle of it, and I guess my eyes had forgotten that they don't all have them.

I haven't quite decided how I feel about that.

Daily Peep: Splash Down!

At her appointment with the cardiologist yesterday, Peeper was cleared to go back to the baby equivalent of "tub baths," rather than just "showers."

(Which, actually, are pretty much tub baths and showers - sitting in a mother's lap in the tub.)

The conversation went something like this:

Whozat: So, is okay to submerge her again?
Dr. C: Well, no baby should be submerged!
Whozat: Not her head! Just to take a bath, instead of a shower?
Dr. C: Sure, that's okay.

I think he was kidding, but it's hard to tell with folks around here, because they don't have much of a sense of irony, sarcasm or hyperbole.

(I should really write more about that sometime. It's a very interesting - and annoying - phenomenon.)

So, that said, little Peeper got a "real" bath last with Mommy yesterday.

Evidently, at some point during the four weeks that she's spent on dry land, she reached splashing age, and we just didn't know it yet!

Shrike tried letting her sit up on the bottom of the tub, but she seemed to prefer for to "float" and have all four limbs free for splashing.

Like this:

Cardio Full Report

I suppose I should go into a little more detail about yesterday's cardiologist appointment, than just the quick text message that I sent on the way home, huh?

It went great!

He said that Peeper's echo was "perfect," and that she's "really taken off" and "really filled out" since surgery.

(They weighed her at about 12 lb 2 oz (!) but, again, I will believe it when I see it on our usual scale at the pediatrician's office. That will happen next Tuesday, when she gets her last (!) Synagis shot.).

He took her off the Lasix, so she's now medication-free for the first time since she was 2 weeks, 3 days old.

And the best part?

He doesn't want to see her again for two months!

(Actually, it will be more like two and a half months from now (June 29) because we're waiting until he's at the OurTown location. Hopefully, we can do that from now on, and won't have to make anymore hour-long drives!)

And, assuming everything is still going well then - our next appointment will be six months after that.

For a little perspective:

She will be fourteen months old at that point.

It's likely to be 2010, because we'll probably push it back a little to get past the holidays.

She will probably be walking.

And talking a bit.

And strong enough to really fight us about the echo.

Cardio Report

Peeper saw her cardiologist again today, and he's still very happy with how she's doing.

Her echo showed that her heart function is still great, and there is no accumulation of fluid around her heart.

He also said that "she looks like a different kid," and that she's "breathing normally," which is a big change from before surgery.

When I asked for some numbers, to put it in perspective, he said that he did not actually count her respirations today, but "eyeballing it" he'd say she was breathing 25 - 35 times per minute, and that before surgery, her respiration rate was in the 60s.

In other words, she was breathing twice as fast as she should.

And now she's not.

Amazing.

He said her incision is still looking good, and snipped the little stitch on the incision where her drain tube was. The suture didn't actually all come out, but it should be able to fall out on its own now.

He also reminded us (I'd forgotten they told us this at the hospital) that her main incision has a lot of internal stitches under the dermabond, and some of them way work their way out through in the incision.

He said that it's okay to just gently pull them, and snip them off short.

He also told us that we "might get an inch or two."

I thanked him for warning us about that, because I would have totally thought she was coming unravelled, like a sweater!

(He said it freaked him out the first time, too!)

It seems like there might be a tiny bit of a suture peeking out at the very bottom end of her incision. It's kind of creeping me out.

He told us to drop her Captopril (blood pressure medication) back to once daily for a week, and then she can stop taking it!

(Actually, it's a week or until we run out, whichever comes sooner. We have just a tiny amount left, and he said not to bother refilling.)

We'll go back in two weeks, and if he's still happy with everything, he'll take her off the Lasix (which she'll continue to take once a day until then), and start spreading out the visits further and further apart.

And, I'm not putting this in the sidebar, because I really don't believe it, given the variability that we've seen from their scales, but they claim that she weighed 11 lb 7 oz!

Daily Peep: Zip Report

Here's a recent photo of Peeper's incision. It's still got a lot of healing to do, but all the scabbiness (and glue) is gone now, and it's looking pretty good.

Weaning

Ha Ha! Had you going there, didn't I?

Peeper saw her cardiologist today and he was very happy with everything, and is starting to wean her off of her medications!

Effective immediately, we're cutting them in half - going from four 1 mg doses of Captopril a day to two, and from two 5 mg doses of Lasix to one.

We'll see him again next week, and if he still likes everything he sees, we'll drop the Captopril completely, and if everything is still going this well when we go back two weeks from that, he'll take her off the Lasix as well!

She's been on Lasix since she was about two weeks old, and Captopril since about three weeks, so it will be a big damn deal to be off of them.

He said again that he ". . . knew she'd do well - she was well-nourished and had good protein stores. . . " and that the surgeon had already reported to him that everything went great, with no problems.

When he listened to her heart, as soon as he put the stethoscope to her chest, he said, "Wow - I can't hear a thing!"

Referring, of course, to the complete absence of the murmur that was so prominent just a few days ago!

He also said that her incision looks good, and if the one little stitch in the drain tube incision hasn't come out by next week, he'll snip it out.

("They are supposed to just absorb, but I probably remove more of them than not.")

He did an EKG, which was "beautiful" and he also "like[d] everything about the echo."

(Peeper, for her part, liked nothing about the echo.)

The echo showed no evidence of any residual defects (meaning the holes are completely closed); her heart function looks good (including the right ventricle, which was still not quite up to snuff on Thursday); and the overall size of her heart is smaller, which is good.

As I said above, we'll go back in a week, and then two weeks after that, and if all is continuing to go well, she'll be off her meds by mid-April!

More Surgery Photos

These are from the real camera, and better quality than the ones I sent from my phone while we were at the hospital.

Right after surgery

Under oxygen tent

Feeling a little better


Out of bed

"Fall Risk" - Ya think?


Home

Examine Her Zipper

This is a pretty good shot of Peeper's incision, six days post-op.

The smaller incision, below and to the right, is where her drain tube was. There's one stitch in that, which will just fall out.

It seems to be healing nicely, and when we were bathing her this evening, we noticed that the scab is already starting to come off in a couple of small places.

There are, of course, plenty of internal stitches (plus some wires, holding her sternum together), but the outer layer of skin is sealed with dermabond, which is basically a medical-grade superglue.

I'm sure that they put it between the two cut edges when they brought them together, and there's also about and inch-wide strip of it "painted" over the whole incision, which you can see in the photo.

That will also just wear away over time, and one edge is already starting to peel up a bit. I can't tell you how much restraint we are both having to exercise to stop ourselves from playing with it.

If it were on my own body, I'd have it about half off by now, I'm sure, but instead, I'm making do with trying to get the remains of other various adhesives - EEG leads, EKG leads, IV-sealing bandages, etc - off her skin.

(You can see some of that in the photo, on her neck (IV), and around her nipple (EKG); I think most of the EEG goo is out of her hair now.)

We have been told, by the way, that the scar will stay roughly the same absolute size as she grows, so it will not extend the full length of her chest as an adult. (Or, more importantly, as a teenager.)

I wasn't able to get a good description of exactly where it will end up (how high on her chest), but hopefully, it will just be more or less hidden in her cleavage, eventually.

We're also told that it should heal to be pretty thin and light, especially if we're careful to avoid too much sun-exposure in the first few years.

Of course, we'll use sunscreen on her anyway, and even before we had a scar to be concerned about, we liked the idea of "rashguard" style swimshirts better than traditional bathing suits for her anyway, mostly for sun protection, but also because so many little girl's bathing suits are so grown-up looking, and we really don't like that.

(Ah, but that's a whole 'nother post. . . .)

It occurs to me that, as she gets older, may be a fine line to walk, though, between covering the scar to protect it from the sun, and coming across (to her) as trying to hide it.

Although I can certainly understand that she may become self-conscious about it at some point (or maybe not, since it's something that will always be there, as far as she knows), I certainly don't want anything we do to give her the idea that it's something to hide or to be ashamed of.

I know that we'll get lots of questions about it, and she'll get even more later, so I guess we will just have to model for her how to answer nonchalantly, and to explain how she got it.

Which is certainly nothing to be ashamed of. In fact, I think it's something she should be pretty proud of, because she's been a real trooper through it all.

Readjusting

We've now been home about two days, and we're all still kind of getting readjusted.

Peeper saw one of her pediatricians yesterday, and she was quite impressed with the difference in her heart-sounds from the last time she listened. (There is no murmur at all now!)

She didn't really have a whole lot of insight for us on the bloody poop issue, though (and we've not seen any more since) but recommended agreed with my recommendation that I cut out the rest of the dairy from my diet - start actually reading labels, rather that just skipping the milk, cheese, ice cream and such.

She acknowledged that, "I know it's a lot of work. . . " but as I told her, "Well, it was a lot of work carrying her [Okay, not really.] and having her [Yes.] but it was worth it, and this is, too."

(But does she have to be sensitive to like my favorite foods in the whole world? Couldn't she be allergic to broccoli?)

Although the bloody poop is gone, Peeper's still spitting up, and had a couple more rather impressive spits while lying in her "nest" in the wee hours this morning.

(Could have been worse - most of the night, she was on the boppy in my lap.)

I called the doctor's office about it, because although this amount of spit-up might be a "good day" for some babies, it is very out of character for her.

The doctor said that the spitting, and what seems to be some painful poopies (but not hard or bloody) is likely caused by her little digestive system just having a hard time getting revved back up after being slowed down by the morphine that she was getting off and on for most of the week.

On Friday, she pooped around 2:30 pm, on the way home from the doctor's office, and then I don't think she did again until about 11 am today. That is not normal for her.

So, I suppose it's no surprise that she's spitting up. She's been nursing almost constantly, and nothing's leaving through the other end, so where else is that milk going to go, but back out the way it came in?

DoulaK stopped by to visit for a while this afternoon, and Peeper spit up a bit while she was here. She said that it was obvious how rare an occurance that is, because we were completely unprepared for it.

There was no spit-rag handy, there was none in the diaper bag, and we were absolutely at a loss as to what to do about it.

I had to go all the way to her bedroom, and into the dresser, and grab a cloth-diaper-that's-not-being-used-as-a-diaper to clean her up!

So, we're hoping she'll have the kinks worked out in the next day or two, and the spitting will stop, as well as the dramatics involved with pooping.

At least, we're assuming that's what she's crying about; she's got her leg a'kickin' and is not wanting to settle in to nurse, which generally goes along with poopy issues.

Also, we've had some crying just it's almost time for another dose of Tylenol, which we're assuming has to do with hurting from the surgery itself.

All in all, though, she's really hanging in there and doing very well. I've never had thoracic surgery, but I know that she's "getting around" much better than I was five days after abdominal surgery.

On the other hand, she is still very much a poor baby.

We have to remind ourselves that, on the inside, she had a pretty significant problem which has now been resolved - because, on the outside, it sure looks like we took a perfectly good baby and broke her.

Thank You Thank You Thank You

Again, I want to thank all of you, and so many other people, for all of your kind words, your concern and your insert-supernatural-intervention-of-your-choice for Peeper and the two of us over the past few days - hell, over the past year since she was conceived - and even before.

It's been incredibly helpful, especially during the hospital stay, to check my email, or here or Facebook, or the Carepage and read messages of support from so many people, from family members to old friends to new virtual friends to perfect strangers.

There are a few people whom I should thank by "name" as well: Shrike's family and DoulaK for sitting with us at the hospital while Peeper was in surgery, and her mom for making a grocery trip this afternoon; A for house/dog/cat sitting; W&C for walking our dogs - and then blogging about it, complete with photos, so we could see for ourselves how well it went; E/K/S for offering to deliver dinner last night, although we ended up passing on it because we were just so exhausted and not up to it; MOMS Club, who will be providing us meals for six different nights over the next two weeks.

Also, we can't say enough good things about the people who took care of us at the hospital - our surgeon, the nurse practitioners who actually managed Peeper's post-op care (especially K, who took great care of her, spent alot of time talk with us about her condition and the plan - and is "family."), the nurses who cared for her around the clock, and the volunteers staffing the Ronald McDonald Family Room.

I also can't say enough good things about the support that we felt from the parents and families of other patients. The family room set-up on the pediatrics floor allowed families a chance to mingle, and talk and support each other.

I know we had some very relevant things to say to the family of the heart-baby (Tetrology of Fallot) who was a day behind Peeper, and in the next bed, (especially assuring them that what they were seeing with Peeper was where their son would be in 24 hours), but also the families of the preemie with RSV, whose twin brother was out in the waiting area with his parents; the three-year-old who'd had some sort of breathing issue (I never really got a good idea what was up with that) or the seventeen-year-old girl with the head trauma from an auto accident.

All radically different medical situations, but worrying about your baby is worrying about your baby - whether she's a few days old, or almost ready to move out.

After all, in what other situation would I be sitting there at 5 am, talking to an Amish (or possibly Mennonite, but I'm pretty sure Amish) woman about the wonders and benefits of breastfeeding and natural birth?

It was great to know that everytime I stepped out of the PICU for a break, someone would ask me how Peeper was doing, and would share their child's progress.

It was so exciting yesterday, when most of the kids that we'd been following so closely got "promoted" to intermediate care, and then home today.

It was like we suddenly had a whole bunch of new best friends - like camp, but with a lot more stress.

I made a point of saying all that to the family services representative who came to check on us today.

A few minutes later, she was back, asking me to help out with a video they were filming, to help raise money, through Children's Miracle Network, for a new children's hospital, with more family facilities, more private rooms, etc.

After taking a moment to put on some make-up and real clothes, I was happy to do it. I said some of those things on camera, and showed off Peeper's Carepage.

Then, they came to the room, and filmed Peeper herself, lying in my lap with her sleeper open to show her incision, being cute as could be.

Pretty cool way to end one hell of a week.

Homecoming

We made it home from SurgeryTown with no incidents.

While Shrike greeted the dogs and unloaded the car, I got Peeper into a clean diaper and some clothes that we recognize.

We've just switched over to her 0-3 wardrobe, and retired most of the newborn outfits, but after spending the past few days looking at her in a "new" (yardsale, I'm sure) fuzzy sleeper that she'd not worn until Monday, and seeing her looking and acting just so wrong for most of the week, it was very important to me to have her in one of "her" outfits that was familiar to me, so that she looked like herself.

We then nursed for a while and went in the bedroom to take a nap.

I laid Peeper in her nest and was getting myself comfortable when she started coughing a bit and I realized that she was spitting up. A lot.

Not vomiting, there was no retching involved (sorry), just spitting up, but like her entire stomach contents.

(This is a child who normally does not spit up. At all.)

So much for the outfit.

We stripped her down and cleaned her up, and Shrike changed out the sheet on the nest mattress.

I lay down beside her on the bed, and Shrike joined us, and the next thing you know, I've whipped out a boob and all three of us are asleep - for about 2 - 3 hours.

It was wonderful.

We've been "practicing" with nursing in the side-lying position, in preparation for moving Peeper out of her nest and letting her fly free in the bed with us.

(The big advantage of this will be the ability to nurse and sleep simultaneously while lying down, rather than sitting up, with her on the boppy.)

She's pretty much filling the nest these days, and flops her legs out the side, and often gets herself turned 90 degrees over the course of the night (Once, Shrike thought I was just so sleepy when I put her back after nursing that I'd stuck her in there the wrong way!) but we are planning to wait until she's healed up from surgery, so she's a little more protected from the possibility of us flopping a hand down in the middle of her chest or something.

But, this afternoon, we were just fine all snugged up together, and she literally stayed latched on the whole time, sleeping and sucking.

We woke up around nine, and gave her medicine (New schedule: .5 cc Lasix 2x daily / 1 cc Captopril 4x daily / Tylenol every 4 hours as needed) and nursed some more.

A little while after she and Shrike had gone to hang out on the couch, she started crying. And crying. And crying.

Shrike changed her diaper and - wouldn't you know it - blood in her poop.

Before the nap, we'd thought we might have seen a few little specks of blood in a diaper, but this was definitely there. Not a lot, but no doubt about it.

And she was crying.

So, I called and talked to the pediatrician's on-call nurse. Again, she said that unless it became a lot or her stool turned black (older, higher up blood) or we couldn't get her settled down, that it didn't warrant an emerency room trip or anything, but we've now got an appointment to see a doctor tomorrow.

Our discharge instructions said to check in with her pediatrician, and they suggested that we call tomorrow to see if we could actually see a doctor when we go for her Synagis shot next week, so we'll go ahead and do that post-op visit and discuss the poop at the same time.

She said it could be related to the morphine having slowed things down, digestively, and now getting going again (so to speak) but her stool hs not been hard at all, just a little different color that usual, and she's been saving up and doing a lot at once, so I'm not sure.

Of course, I started mentally reviewing my diet from the past few days. I'm still avoiding the obvious dairy, but maybe it's time to start reading labels and cut out all dairy?

As much as I hate to think about this, maybe I need to look at the possibilty that chocolate is a problem for her?

Maybe I need to do an elimination diet to nail down the culprit?

She finally settled down, after "dancing" with Mommy, and did nurse again. She's had a couple more small poops with no blood, and she and Mommy are asleep on the couch right now, waiting for her next dose of Captopril and Tylenol (in about fifteen minutes) and then we'll be heading to bed.

Home

Home at last.

We're Outta Here!

We're in the car, leaving the hospital!

Going Home!!!

Should be out w/in 3 hours!!!
Thank you all for everything!!!

Daily Peep: Panda-Head Baby

Laughing!

Waiting to hear back from echo. Hope to be out today!