garden?

I didn’t notice this until Steve pointed it out but apparently, we have a tomato plant growing on our patio between our back door and porch swing, growing between the house and the patio’s concrete!

Tomato Plant

It’s actually gotten to be what I consider to be quite large, I took the photo a couple of weeks ago, I guess it was. At my last count it had 23 blossoms on it but, according to my friend, it was taking too long for those blossoms to turn into tomatoes. Yesterday, though, she pointed out two or three tiny green tomatoes with the diameter of about the size of a dime. So I guess I win the unofficial bet – Steve thought it wouldn’t be able to put out fruit while I argued that the concrete on the patio doesn’t go on forever. :P
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same old, same old

Us by Susan I know. I totally suck when it comes to updating lately. I think this is the longest I’ve gone without posting something here in the 5+ years I’ve had this domain.

We’ve settled into a routine, I guess. K finally is pretty good with her days and nights not being mixed up and she pretty much sleeps from 11pm or a bit earlier through to 11am, if I am sure to start her feeds and change her diaper from time to time. She might get up at 8am but often goes back to sleep. The past two days she went back to sleep at such a rate that she choked on her bottle and had a heart rate drop. If she’s not waking up, I tube feed her. The gastro doctor’s office just told me today that we can start dropping the 2 am feeding. We did a little 48 hour test and she’s getting enough to eat all the other times and she slept right through and didn’t make any noise to wake me until closer to 5 so, yay, I get to get more sleep.
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all at home

Going Home Well, K has now been home for about two and a half days. It’s already been one wild ride. We’re trying to get her used to this environment, do all of her care, and learn her equipment inside and out. She has a condenser that makes oxygen for her as well as 4 or 5 travel tanks that will last up to 20 hours each, an apnea monitor that watches over her heart rate and breathing, a pulse oximeter that also watches over her heart rate and then her blood oxygen level, and a feeding pump for her G-tube should we need to use it (which we do quite a bit, so far).

So far she’s wearing all of this equipment 24/7 except the feeding pump, of course. There’s a little extension tube thing that goes between her and the tubing on the pump that I have to attach to her G-button. I don’t like to leave it attached, just to avoid the situation where she might pull on it and yank the button out. Her button though, I almost have to laugh each time I close it because it makes her look like a little swimming pool toy.

The nurse practitioner had said something about her only having to wear the oximeter for a 4 hour block during the day but we’ve had her wear it all the time so far. That one actually shows numbers so we can see her heart rate and what her oxygen content is. The apnea monitor only has indicator lights to show you it’s working and picking stuff up, but you can’t see what her actual heart rate is and it doesn’t say anything about oxygen. I’m not too worried about oxygen, though, they have her at a flow where she hardly ever has too little in her blood. Only if she pulls out her cannula for too long of a time or is just inconsolably screaming for a long time or something.

Speaking of inconsolably crying – that’s how we spent all last night from 2 am forward until about 2 pm She hardly slept at all during that time, too, and we couldn’t figure out what was wrong. Maybe she was hot, maybe she was just stressed because of her new surroundings (after all, think about where she spent the first 3 months of her life outside the womb), who knows. But any time we’d finally get her to sleep and put her in the pack n play, she’d be screaming 5 seconds later. And, of course, any time you take her temperature, change her diaper, wipe her down, change her leads, adjust any other equipment… it’s pure torture. That’s what they should do to terrorists they’ve caught, ’cause it’s apparently the end of the world to have your temperature taken… under your arm!

So, yes, because of her equipment, cord lengths, and such, she’s currently in the pack n play in the living room. She can go in the crib in E’s room, just as soon as we’re ready to make the transition. I kinda like her out here, though. It also depends on when I get tired of the couch, because I’m back here again, at least at night and when I need to be around her. The manuals say be within 10 seconds away from the infant. When it alarms, if it’s a real alarm, you gotta be there quickly. And if I were upstairs and her downstairs… I’d kill myself the first time I had to run down the steps. Steve’s off work, too, and he’s been staying down here with us. Eventually I can put her in the crib and take E’s bed and he can go upstairs with Steve for a while. Probably at least as long as K requires oxygen. Maybe? We’ll see. I don’t mind so much, finally got a box springs for his bed so it won’t be bad for a person of my size to lay on it.

Most of E’s toys are still in the living room. I have yet to go through them with him and organize them into the unsused drawers we have in their room. K has several drawers taken up with her clothes and blankets and oh, so many medical supplies (bags for the feeding pump, syringes of 5 thousand different sizes, spare cannulas, stickers for the side of her face, adhesive remover, sterile water, SimplyThick, spare leads and a belt, spare oxygen sensors, etc, etc, etc). We have a bunch of these, working out quite well, I think. We need more, too. Planning it right, we can get all their clothes and (not huge) toys in there and if the time comes and we’re still here when K is in a regular bed, get them some bunk beds to save room.

But anyway, here’s hoping for a quiet evening…

fundoplication revisited

Kayleigh had the Ph test, it started at 8 am Monday and ended at 8 am Tuesday. It tested and monitored several things about her reflux and consisted of a probe sent down just like her current feeding tube, but in the other nostril. Poor baby was quite uncomfortable all Monday and because some things didn’t happen the way they usually do, I was worried that the test results would not be accurate, but might be sort of “sugar coated.” However, in the end Kayleigh met and exceeded, as the surgeon said, all the requirements for getting the fundoplication.

Ph Test Ph Test Thingy

The outside end of the probe was attached to that little black box which recorded the results. The nurses also had to sort of calibrate it by pressing buttons to indicate whether she was lying down or up or was feeding, etc.
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NICU-itis & the kindness of strangers & fundoplication

I totally have what the nurses call NICU-itis. SO tired of being there. But we are getting closer to her coming home.

It’s not just rough on me, though. This past Monday, Elijah started day care for the first time ever. While he was really excited about going that day, as we were on the way there, he asked me what I was going to do while he was there. I told him I was going to the hospital. He asked why and I said “to feed the baby.” He thought for a second then said, “well… can’t you just let the nurses do that?” He actually asked me that question twice. It was like he wanted to go to day care – again, he was really excited – but he didn’t want me going to the hospital at all. When I picked him up, surprisingly, he was ready to go.

But on Tuesday, when I picked him up from his second day of day care, he yelled from the top of the slide, “Mommy!!!! Can you, can you go back and see Kayleigh some more? I’m not done playing!” So who really knows what is going on in that kid’s head? But I do think he’s tired of it all, despite his getting to go pretty much anywhere and everywhere he wants.

However, and it’s not the getting of stuff that does it, but some people we don’t even know have been generous with us and making us feel loved. Such as…
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