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…

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.

As it was, I was going to bed as soon after her 11 pm feeding as possible so no earlier than 1130 then getting up at 145 to start her next feeding so back to sleep about 230, though I’d doze a lot of times, of course. I try to stay awake just so that I have my wits about me if her feeding pump starts beeping for some random reason. So then I’d be up again at 445 then back to sleep as soon as possible so around 530 then up again at 745 and if I wasn’t too terribly tired, I stay up after that feeding and have a little time to get a shower and some things done before 11. So even just dropping the 2am feeding is going to help me get some better quality sleep. Even if I have to spend that sleep time on the couch.

I figure I won’t be sleeping back upstairs until after this kid’s off oxygen. I need to be close should her monitors go off (not to mention the constant feedings) and I just know that the first time one went off in the night and I was upstairs I’d kill myself trying to get downstairs. I spent a few nights in Elijah’s bed while he slept in mine and that was so nice but he decided he doesn’t care for that. He wants to sleep in the living room but I am not allowing it as he’s recently fallen off my bed and the love seat in the middle of the night.

But the rest of my day is mostly spent holding K because she refuses to be put down if she’s awake, and sometimes if she’s asleep. I’m not sure how to break this. I can’t remember what it was like with E anymore. Eventually I know she’ll grow out of it though.

K is up to 9 pounds and 4.5 ounces though, as of Tuesday. So, assuming the scale at the pediatrician’s and the scale at the pulmonary doctor’s aren’t that far off from one another, she’s gained more than her one ounce a day they want her to gain over the past week and a half.

The pulmonary doctor told us we can turn down her oxygen to 1/8th though so I did that last night. What stinks, though, is that the probes for the oximeter STINK. They don’t last for anything. I’ve had to call twice now for some more. And now that we’ve turned her down, we want her on the meter more to make sure she’s keeping enough oxygen in her blood. But the stupid probes keep breaking, and for no reason at all, it’s not like we’re rough on them. We also go through a lot of the stickers that go on her face to hold her oxygen tubes where they need to be, they call them Tender Grips. K likes to pull them off, crazy kid.

That’s about it on the health front, I think. Her next appointment is another one with the pulmonary doctor, then a few days later the pediatrician, then the surgeon that did her fundo and G-button, then a children’s urologist, then the gastro doctor again, and then a children’s renal doctor… and that brings us up to the end of August. :P Lots of appointments for this kid for her first couple of years! The pediatrician wanted us to make the urologist and renal doctors see her on the same day but they weren’t readily available and I didn’t feel like calling back and forth to work it out. After all, it’s still better than going out every day, day after day after day after day. I can handle one here, one four days later or a week later, etc.

A friend came the other day and took pictures for us like she did when Elijah was born. That’s one of the photos you saw at the beginning of the post but here’s my absolute favorite:

Ok, so, my last update I talked about her kidneys and how she has the grade 3 and a grade 5 reflux and will need surgery to fix that, sometime in her first year, the pediatrician tells me. We also found out that the kidney with the grade 5 is also at a lowered function. It might only function 5% of what it should, the specialist told me, or it could be 20%. They don’t know. He said that also in time, her left kidney (which as of now he sees as perfectly fine and says it can carry her through life by itself) should compensate by growing larger. If it doesn’t, it means that the right kidney has more function than he thinks it does, or that it is also bad. So we shall see what we shall see. Lots of people live with one kidney, I’m sure she’ll be fine. He did mention, though, something about, I think, if it gets worse, or really bad, then it will have to come out. I hope that doesn’t happen, of course, but we’ll take things as they come.

K is now 7 lbs and 3 oz. I’m not sure how tall she is, they haven’t updated me on that lately. She’s gaining weight steadily and it seems like it’s been really fast here lately but they say it’s still ok, no need for diuretics yet again.

The lung specialist came and talked to me last week. When they call him in, they’re pretty confident that the baby is going home on oxygen. Because of this, they’re also not too worried about weaning her down any more. So it sounds like when she does come home she’ll have several oxygen tanks.

So her next battle is “nippling,” as they call it, ie. taking all her feedings via mouth. Right now, the orders are that she gets three nippling feedings a day, basically one bottle feed and two breast feeds. But if she only does one breast feed, she can do another bottle feed. The last two days we’ve had some really good feeding sessions, so I’m encouraged.

As of Monday, the doctor was talking to me about how if she doesn’t get any better with the feedings via mouth by about 42 weeks (when she’d be considered 2 weeks over due if I were still pregnant) they’ll start talking about doing a feeding tube for her to go home with. Most likely it would be a G-tube which is inserted through the side into the stomach, rather than through her nose down into her stomach like she has now. It sounds scary but it is actually the better way to go for if you have to have that at home as with the tube she has now, it has to be changed on a weekly basis (or before) and it can become dislodged and go to her lungs (which is very bad), etc. And, I’m told, it’s incredibly amazing how the G-tube area heals, they just pull it out and the stomach and insides just heal right up; in the words of the pediatrician: “very amazing.”

The nurse practitioner I talked to yesterday led me to believe that 44 weeks would be the maximum. They’d start talking about a feeding tube around 41 or 42 weeks and she could get it and go home around 44. So at the very latest, that’s, like, July 24. Not ideal, but I’ll take it.

Of course, again, after the last two days, I’m very encouraged. Today, both feedings I did and one of them yesterday were full feedings, she took enough milk from me that they didn’t need to give her more via her tube. So that is really awesome. And if the last two days are any indication, I’ve found she’s figuring it out better, knows what it’s going to take to get her tummy full and knows that freaking out if she doesn’t get something right away is not going to help.

So I’m not worried.

Of course, coming home on oxygen isn’t ideal, either, but we’ll deal with it. She’ll have a little monitor that will go off if her heart rate is below a certain level, amongst a few other things (I believe). So we’ll deal with it. The lung guy also mentioned that this is a good time of year for her to be going home on oxygen and that he expects her to be off of the oxygen before RSV season starts in October.

The other thing is her acid reflux. I wish they had diagnosed her with this sooner, but I guess it was a while before they thought she needed the test. I actually went with her and watched while she took the upper GI test. I watched on the x-ray monitor as she sucked a bottle of that barium stuff and twice she had reflux, once mostly up her throat and the second time up into her mouth. So now she gets Mylanta before every feeding and then an acid controller twice a day. I think it’s really helped. She still grunts and what not but not nearly as much as she was before that.

But the reflux means she also has her bed on an incline. So she’ll also need a sling thing and to have her crib at home raised. I’m not sure how that’s going to work upstairs or with the Pack N Play but we’ll figure it out. If nothing else I guess the poor kid can sleep in the bouncy seat or swing (when I get one) lol. Just so she’s inclined a bit to help her keep that stuff down.

And with all that said… the nurses have finally outlawed her preemie “outfits.” I don’t know what they’re called, but the little single pieces of clothing that have a top and pants and they might have feet in them? She’s too tall now for them, though she could probably wear them still otherwise and her onesies still fit her. She sure is growing though. She’s already bigger than Elijah was when he was born, quite a bit bigger, actually!

Ooooh, and yesterday? I turned around just in time to see the mobile swinging wildly when it had been still a second before… K had been reaching for it and she finally got 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: