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
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.
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.
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.
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.
We’re in the car, leaving the hospital!
Should be out w/in 3 hours!!!
Thank you all for everything!!!