Today K went to the lung doctor, her 3rd appointment with him since her discharge from the NICU. Each appointment gets further and further in between and now she doesn’t need to go back until December. I don’t know how long he will be following her but now he has told us that she can come off of the apnea monitor.

At each appointment, he takes the monitor and downloads all of the activity it has recorded and checks all of that to see what’s going on. He said there was nothing of any worry at all this time. Last time she had 6 recorded spots of heart rate drops — all with feedings. At the appointment before that, there were even more including one that did not look like it was during a feeding.

I mentioned the times since she’s come off the oxygen how I’ve gotten up in the morning (at least on 3 occasions) to find the heart rate drop notification light was red. This mean she’d had a heart rate drop and the machine had not been reset. All of these times I was sleeping in the same room with her and it did not wake me up so I could only figure that she’d dropped and come right back up, maybe the machine only did a short beep once. The doctor told me that the normal rate for K’s age now can go as low as 60 and that the machine was set to alarm if she went down to 80. So she didn’t actually have a true heart rate drop.

I mentioned how weird it was going to be taking her off of this monitor… and how hard. This poor little kid has been on monitors – of some kind – ever since she was born, and then for those 3 weeks before she was born! To suddenly take them away and remove that security from us is a bit unnerving. He said that we should look at her as a full term, 2 and a half month old infant who would not be on monitors. It’s hard to do, though. But the doctor also said that we could keep the monitor longer to wean ourselves off of it. I did take the plunge, though, and she didn’t wear it home. She is wearing it now, though, mostly because Steve is nervous and asked that I put it on her for tonight at least.

But the doctor said he would call the home health care people and have them pick up the other stuff. So hopefully soon they will call me about picking up the oximeter, oxygen concentrator, and 4 portable oxygen tanks. We did already send back one portable but didn’t get a refill on it. Those things would have lasted 20 hours on the rate she came home on, longer on what she went to later, so we only went through one and about a fifth of one going to doctor appointments. And the “empty” tank really isn’t empty, they tell you to quit using it when it has 500 psi left.

Kayleigh also had to get another PKU screening done as ordered by per pediatrician. I really don’t know why she needed this other one, but I’m sure it has something to do with being a follow up since the first one was probably done in the NICU. I was proud of her though, the tech stuck her foot and started dabbing the blood on the little circles on the paper (that test is weird) and K didn’t even cry. She struggled a bit because she doesn’t like anyone really forcing her to move her legs in any direction (who does?) but she didn’t cry at all, even when she was first stuck. The last time she had blood work… oh, how she cried.

In other news, the lung doctor said that Steve and I need to get flu shots. I need to go talk to the pediatrician though and learn about if we can even get it? From what I understand those things are often in limited quantities, right? And they usually give to high risk groups first, right? I’m not sure I qualify, I’ve never had one before. I’ve heard the swine flu shot is supposed to come out in October. I also need to find out if K will get that or if we will need to. They won’t give it to infants under 6 months and while she will be 6 months in October I don’t know if they will go by her actual or corrected age. I assume they would go by her actual age, though, since they do for vaccines. That in itself kind of weirds me out because it seems like everything except vaccines goes by corrected age. Oh well, we will see the pediatrician before all of that needs to be done.

Anyway——-> /ramble.

The Renegade Tomato Weed is now HUUUUGE. And it looks, “oh so wonderful” there but now it’s actually producing some red tomatoes so I don’t know what else to do with it but let it go. Elijah loves it. He loves to pick the tomatoes and he’ll wash them and eat them right away. Strange boy who will eat the grape tomatoes but not touch any other kind.

It made a nice addition to his nature journal though, for today, the first day of school. He cut a clipping of just leaves and then a clipping of blossoms and put them on a page. He wrote “tomato” and the date and drew a picture of tomatoes on the vine (though he insisted the vine be red and the tomatoes green… whatever) and he drew a picture of the blossoms. On the back I printed the photo above as well as this one and he taped them on.

For the first day we also did 3 math pages, 3 pages of handwriting basic skills, reviewed letters and sounds and some easy words, and read the first chapter (?) from the Wizard of Oz. Some time ago I bought The Treasury of Oz which has all of Baum’s books in it, so that’s what we’re reading from a section at a time. It’s a big book with two columns of about 10 pt text, no illustrations — there is a lot in there!

But Elijah was SO good today, I hope every day goes as smooth! He cooperated, he listened for the most part, he did his work… it was amazing. And Kayleigh slept through all of it. She woke up to eat so we took a little break before I read to him after she fell asleep, but she slept well before then. I know every day won’t be so easy, but boy was it nice for the first day of this year!

There was more I wanted to say about K, but I forget. :P
She’s doing well, though. Starting to make more noises and eating more. Her development is right in line with her corrected age. Guess I can’t ask for more, could I? :)

And I know this sounds petty, but her health aside, I’m glad she’s off of oxygen because even with the cooler summer we’ve had so far, our electric bill with that oxygen condenser running was 25% more than it’s ever ever been. The bill almost gave me a heart attack. Not to mention there’s the rental cost which for any one piece of equipment we’ve had to pay for isn’t bad after insurance pays, but it really adds up! And the G-button stuff, though, that wasn’t covered by insurance at all so all of that was out of pocket. I still need to find somewhere to send our unused, unopened stuff. I have spare bags, an extension tube, and even a spare G-button. When the doctor clears K to actually be rid of the equipment (I can’t see him NOT saying we don’t need it anymore) then I’ll also have spare cannulas and tender grips, etc. The equipment supplier would not take them back even though we were originally told (by who? can’t remember) they’d take back unopened stuff for credit. They keep insisting that the insurance paid for it so we own it and we kept saying NO WE paid for it and we’d like to send it back but they won’t take it so we are also the proud owners of an IV pole. But it was suggested to me that maybe a hospital or nursing home would like our spare stuff so I think I’m going to ask online for a family like us and if I don’t find one, then I’ll start asking the hospitals and stuff. But down here… after the home nurse care we got, it makes me wonder if anyone has ever even HEARD of a G-button!!

Side note: WOW, Elijah is totally hooked on this new Fresh Beat Band show… I’m glad it’s not quite as annoying as his last obsession: iCarly or the the Wonder Pets for that matter…

She stays saturated really well during awake times, of course, and during feedings. The main concern is during feedings and sleeping. During feedings she would be alternating holding her breath to swallow/drink and during sleepings, she would be breathing more shallow than when awake. Sometimes with sleeping, she’s borderline and right in that mid 90 range but has actually been doing better even since Tuesday night.

That night, she was hanging around in the 93 and 94 range for too long so I put her oxygen back on but at a reduced level, at 1/16 of a liter (where she’d been before at 1/8). The next time I got up, I saw that she had ripped the cannula off along with her stickers and was sleeping just fine, satting high. So the oxygen has not gone back on since.

On Saturday (yesterday), she went to the pediatrician for a regular 4 month check up and the pediatrician is very very happy with K’s progress. Her weight gain, height, head circumference, overall development, etc., all very good. She did get several vaccinations contained in 3 shots and an oral dose. The pediatrician also gave us 5 cans of sample size formula. I love sample size formula, the cans are actually a pretty good size, saving us something like $40.

On the evening of the 3d, K was officially fully on formula. I put her on Enfamil Gentlease which says it is for gassy and fussy babies. Because of her fundoplication, she was having a lot of extra gas problems. But after a few days on the Gentlease she’s MUCH happier, MUCH MUCH less gassy.

And then, sometime early Sunday morning…. dah, dah, dunnnnn, we lost the G-button again! When K woke me up around 8 I was going to feed her only to find the button gone. Her bed was wet and her clothes and blanket. Not terribly sopping wet, though, so I am assuming it came out sometime during the end of her feeding that she got from about 430 to 5. This time I called and I talked to the surgeon’s partner and I said, “you know what, can we just leave it out?” He let me make that decision, of course, and told me how to care for it. Steve was in a funk about it so I called the pediatrician’s line and got the one on call (there’s something like 6 of them). After spelling it all out for her, she said that if K were her patient, she’d say leave it out, too. She said she’d see K’s doctor later today so she would talk to her but she ended up calling back soon thereafter and said she went ahead and called and K’s doctor agreed, too. She was so happy with her growth and development she’s also sure it will be fine.

The Button has become a sort of convenience. There was one day last week we didn’t use it at all. K was up so late, she took a bottle at 2 that morning then slept and took a bottle at 8. The button has become a way for me to start a feeding in the night and K stays pretty much fully asleep and I go back to sleep with little trouble, usually. So this just means she’ll have to get up and have a bottle. Maybe it’ll actually help to transition her to sleep through the night more.

There are only two drawbacks. One is that if she gets sick and refuses to eat, she’ll have to be admitted to the hospital for a tube down her nose like before. But like the pediatrician said, we can’t just go on fear with her about everything and with a term baby who never had a Button to begin with, it’d be the same thing. We’re just going to be extra careful about everything and make sure this girl doesn’t get sick. Secondly, there’s an issue with her vitamins. I’m going to try to talk to the pediatrician about this tomorrow. K gets a multivitamin with iron, 1 mil a day. That stuff is NASTY. It is brown, it smells, and babies often puke it up. I tried before, K is not stupid – she refuses a bottle that has it mixed in. So I’ve been administering it through the tube. Her antibiotics will be fine, she likes those, but she hates these vitamins. But she was also supposed to be on these, mainly for the iron, when on breast milk. So with the formula, often those things are iron fortified, maybe she doesn’t need it anymore until she can take a chewable or something. I’m also going to try splitting it into smaller amounts. If I can get her to take a little bit at each feeding, maybe that will be fine, too.

And then if things weren’t just so crazy with her, Steve had to run out and buy a new water heater yesterday. Apparently the one we had was leaking and about to burst, so he had to get something. We had a gas one, he came back with electric. His brother came and helped him get it downstairs but then didn’t stick around and this morning Steve took the old one outside by himself (without my knowledge) and he seems to have hurt himself. Sigh. Plus, he was upset because there were some parts he needed and he kept saying he saw some around here in a bag “the other day” but we couldn’t find them anywhere. So there was no hot water until he got those parts this morning.

AND. Elijah was out at my mother-in-law’s this afternoon after church with them and he was playing on one of the lawn tractors. My sister-in-law turned her back after telling him not to mess with it while she was gone, she was just grabbing her tea off the porch. Of course, he didn’t listen and the next thing you know he was flying down the hill on the tractor, screaming his guts out, I’m told. He stopped when he hit a stump and it broke the axle in two. So Elijah has officially totaled his first vehicle as Steve says you can’t find the parts anymore. I’m not sure what’s going to happen with that. Poor kid though, he’s allowed to play on the tractors normally but he needs to learn to listen to things, like when he’s told “not until I get back” or not to touch specific things. He’s lucky he wasn’t hurt. Though, it’s just weird how things like that happen. The hill isn’t that steep and my sister-in-law said the tractor was parked in a spot where you wouldn’t think it would roll, even if put in neutral. But apparently that’s what he did, put it in neutral (he NEVER plays with the keys present) and it rolled.

Wow, if things had been different… I could have had TWO kids in the hospital today…

The doctors have made a few changes to her care recently. She’s still on the low flow oxygen, doing very well, so well that they took her down from 1/4 liter of air to 1/8 yesterday. It just means there’s only 1/8 liters of air flowing through a minute as compared to the 1/4 it was before. No, I didn’t know they could measure air in liters before all this, either! The doctor said he’d like to try her on room air (with no added oxygen) soon and see how she does. I’m not sure when he is going to do that but I’m sure it’s going to have to be at least a few days yet. He said some babies need to go to that other step of 1/16 of a liter before they get to room air. She’s doing well on the 1/8 liters so far. She desats some again when she gets upset but in time that will fix itself, too.

They’ve changed her feedings from every 2 hours to every 3 and her intake is up to an ounce and a half every time (45 milliliters). We’re working on teaching her the bottle – she knows how to do it but she’s been known to take too much in and then choke on it. They did a swallow study on her today where they had her take dye and they watched with x-ray (I think?) how she handles it. They said she did really good with that. So I think she just needs practice.

Actually, I think that’s it except for we took in a mobile for her and she loves to look at it!!

When I last posted (5-2), she was 2lbs, 12oz. She is now 4lbs, 3oz (as of the night of 5-23). She’s now part of this babyicu.com thing where I can log in and see photos (apparently rarely though) and a graph of her weight. It only charts the last 20 though, so I’m taking screenshots and putting them together, here’s what we have (click to view larger, weight is in grams):

So that’s pretty neat.

K is now on the nasal cannula full time and has been for a while though she is also back on the high humidity. They had taken her off of it to “home” oxygen (I believe it’s called) but she apparently still needed some of the pressure that the high humidity offers and so she went back on that. It’s not a set back, necessarily, it’s just that she wasn’t ready to move forward. The high humidity, though, puts out humid air forced into her nose rather than just having a steady flow of just oxygen, if that makes any sense. She was originally on 5 liters (per minute) but is currently on 4. Hopefully that will continue to go down here soon.

But she’s 35 weeks gestational age so she’s at the point where she’s started to maintain her temperature better (putting on weight helps with that) and is starting to learn to suck, swallow, and breathe all at the same time. So a few days ago, she got out of the incubator and into a crib. It’s so ironic because in our discharge class and elsewhere they talk about how at home you want the baby to sleep on her back with no blankets and nothing in the bed to avoid SIDS. Yet here, they have her bundled up in a blanket with another blanket on top of her with positioners and lots of stuff in her bed and she can sleep on her side or tummy or back. Of course, it’s ok now because she’s on the monitors and surrounded by nurses and doctors, it just strikes me as weird. However, soon they’ll start transitioning her to that back to sleep position all the time.

Last Monday morning, my father-in-law went into the blood bank and donated some blood especially for Kayleigh. The doctors had been saying the previous Saturday that she was probably going to need some blood as her red count was not quite where they wanted it and that they would check later. In other words, it was something she needed but it wasn’t a priority and they expected the blood to be done processing Wednesday. On Tuesday, the blood was ready and they checked her again and she’d actually gone down in her account so they went from a “probably going to need it” to “ok, gotta do it now.” She got half of it Tuesday night and half of it Wednesday night. 16 milliliters over 4 hours each time, so a total of 1 and 1/15 of an ounce. She seems to be doing better now that she’s gotten it. The big issue with her was that with not enough red blood cells, she wasn’t getting enough oxygen. Apparently, red blood cells live about 120 days so hopefully before all these die off her body will be making enough for her.

She’s still feeding with tube now but is starting to learn with the occupational therapist (OT) to take a bottle. We’ve started with this bottle that has a variable nipple that you control with a dial, on level 0, which is more like a pacifier. We dip it in milk then let her suck on it. But the process is very slow going, don’t want to stress her out. She needs to work on her breathing at this time mostly. However, she shows great interest and the OT and I even cracked up when she did the “whole eyes closed but searching for something to suck on so she opens her mouth wide and shakes her head furiously” thing. She had to get a new feeding tube a bit early this past weekend because her PGA came with some blood (PGA is what they suck out of her stomach with a syringe to see how much she’s digested). And, apparently for the first time, she fought it. So that is apparently a good sign as far as bottle feeding goes.

She didn’t like it either, as you can hear!

I guess that’s enough for now, I’ll try to update more, heh. But now it’s time to get a shower as my boys are giving me the present of heading to the hospital alone today while they do Father-Son stuff!

Here are some more photos: