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Since it's worked so well for us so far, the next time you're talking with insert-supernatural-intervener-of-your-choice, please request some healthy-heart-mojo for the husband of a new friend, and some sticky-baby/ies-mojo for someone very special to us.
Thanks.
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.
They just moved us out of PICU and into Intermediate Care. We have a private room (don't seem to be many of those) and they brought in a recliner, in addition to the bench/couch, so Shrike has checked out of the hotel and we're both in the room and fairly comfy.
She's on the couch and I'm in the recliner, so I can nurse Peeper sitting up, then sleep reclined. I wouldn't buy one for the house, but it's comfy enough.
We're hoping that she'll be discharged tomorrow, but you know how that works, we won't really know when until the orders are signed.
She'll have another echocardiogram in the morning, and if everything is hunky-dory, we could get out tomorrow afternoon.
If her cardiac function isn't quite what they want yet, then we might stick around a bit longer.
That's nothing to be concerned about, just that the right ventricle has to get used to suddenly having the right amount of fluid, rather than too much (it's a bit "flabby" after the hole is closed, and has to "tighten up") and the left ventricle has to get used to only needing to pump the normal force to get enough blood out the aorta, rather than pumping harder to make up for what was shunting to the right ventricle.
Basically, the heart just has to relearn how to be normal. Hopefully it has by morning, but if it's not quite there yet they'll want to keep an eye on her a bit more.
She's off the med that they had her on to help with that, so that's good, just need to see where the function is.
It's not a concern as to whether she'll get it together, just a question how long it takes.
So, if all goes as planned, we hope to be out tomorrow afternoon or evening, but no promises.
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Peeper and I have been breastfeeding for...
Six Weeks
Three Months
Six Months
Nine Months
Twelve Months
Eighteen Months
Two Years
Three Years
Four Years Four-and-a-half years and counting! | |
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