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…

This pink afghan that K is laying with was made by a friend of my mom’s long-time friend. I do know my mom’s friend, have all my life, but I don’t know her friend. After hearing K’s story, apparently, she made this blanket just for us and I opened it at my shower in May. How sweet is that?

This little baby quilt came by her room a couple of weeks ago. A NICUPS member dropped it off, but I don’t know who made it. It’s so sweet with these swirling patterns for the quilting and the wheels made from this fanned fabric.

This is a rather large quilt – maybe twin size? It was made by the Calico Needlers Quilt Guild of St. Charles (MO). It was in K’s room one morning when I came in last week. So very sweet, I love the quilting pattern, flowers and leaves.

This little blanket was in K’s room the other day and I asked the nurse where it came from and she had no idea either. Then the pediatrician called – as she always does on the days she visits K – and told me it was made by a woman who also uses this pediatrician. Apparently, every so often this woman asks if there are any kids or babies she can do something for. So she made Kayleigh this blanket!

That’s not all, either. Yesterday I walked in and there was a new outfit with her other clothing. This time the nurse did know where it came from. Apparently there was another nurse who works there that we don’t know who saw it in the store and couldn’t resist buying it because she thought it was adorable, she then asked our nurse who in there might it fit. So now Kayleigh has a little 4th of July outfit. I don’t have any photos though. She’ll probably be able to wear it for the 5th of July, haha, because I had to bring it home and wash it first in her detergent and so it will go back with us tomorrow. It’s a cute little red, white, and blue thing.

I’m finding out that it’s apparently pretty common for the nurses to buy clothing for the babies. There’s a little onesie in there floating around that I’ve been asked several times if it is ours or not. I’ve said it’s not and one nurse assumed that it went with a baby who had gone home earlier that day and it got forgotten. We left it out on the desk. Yesterday it appeared in our room so I gave in and brought it home to wash it. The nurse thinks that another nurse had bought it for Baby L.

Of course, we have lots of wonderful things given to us by friends and family for Kayleigh but these things from complete strangers just have me going “whoa” you know? Just good to know that there are people out there who will do nice things for people they don’t even know.

And now, fundoplication. Er, the possibility thereof. The following is a re-post of what I put in Facebook last night. I’m lazy :)

So the GI doctor finally saw Kayleigh last night. She has confirmed Kayleigh is going to get a G-tube to come home. A G-tube will go in her side straight into her stomach. There’s apparently some little balloon thing, though, to keep it in place and so that will occupy some space in her stomach. So, they want to do what is called a Ph test to see if the G-tube would make a bad thing worse or not – her acid reflux. That will mean they put a probe down her throat like her current feeding tube is and for 24 hours it will test how bad her reflux is. This means, though, that to get an accurate reading they have to stop all her acid medicines tonight. So no more Prevacid or Mylanta until Tuesday sometime. So we’re gonna have one cranky baby this weekend. So when we get the results of the Ph test, we can further form the plan of her coming home. If they determine her reflux is too bad, though, she’ll get surgery, something called fundoplication (thank you, Google, for your “did you mean…”) which, as I understand it, means they take some of her stomach and tighten it around her esophagus – https://www.gensurgeon.co.uk/wp-content/uploads/NISSEN_FUNDOPLICATION.jpg – which will then, according to the nurse practitioner, pretty much take care of her reflux. You might ask – and I did – why, then, if this takes care of it, don’t they just do it and get it over with? Apparently they don’t like doing surgeries that aren’t required – of course, completely understandable – and most kids grow out of it anyway. But this test will tell us more. Basically, in a nutshell, she IS getting the G-tube (if we ever want her to be able to come home) but she’ll have the Ph test to see if she needs the fundoplication or not. If it’s determined that the G-tube won’t aggravate her reflux too bad, then she won’t get it. So then I would guess that after her surgery from the G-tube has healed enough she will get to come home. Either way, hopefully by Wednesday we’ll know more about when she can come home.

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!

He does his “I’m naked” dance (read: sigh). He puts on his shirt. He does his “I’m naked” dance, going “see this, see this, see this?”

I’m all, “Elijah. Put on your clothes already.”

He’s getting his underwear on now and suddenly he says, “HEY! I don’t want people watching me when I’m changing!” I’m all, “HEY! I was here first! If you don’t like it you can go in your room and change.”

So, now wearing his t-shirt and underwear he goes into his bedroom and closes the door to put on his shorts and socks.

A little late there, Bud.

Gotta love him tho. :)

Now (6-13-09):

Nod in approval, please. :)

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!!

All I can say is: thank God we have good insurance!

The total base costs for me? This would include anything related to the pregnancy, so we’re talking the first doctor, the second set of doctors (4 of them), many ultrasounds, lab work, emergency room visit, first hospital stay (1 night), second hospital stay (20 nights), medications, all the various things they charge you for, and anesthetic that I didn’t get that took 30 minutes to prepare for.

Wait, I forgot, the insurance hasn’t yet sent us papers on the hospital stay of 20 nights or anything related to it. So the working total of everything but that so far is $21,219.30. And if one night’s stay at the hospital was $3069.21, we can expect 20 nights to be at least another $61,384.20 when you consider I had more medications, including the steroid shots, saw more doctors, etc.

It’s absolutely unreal and, yes, because “we have no bonanza,” I’m very glad we have awesome insurance through S’s union. They pay 90% of everything and we pay 10% until we hit $500 then we’re done! That’s on me. The same thing on K, too. And not only will $1,000 do good for both of us, but E could go out and bust himself up with his antics and he’d be free, too. This just doesn’t include any out-patient prescriptions (so still have to pay our part for my allergy medication) or someone out of network (no one has been so far). Not that I want E to go bust himself up, but knowing that kid he’s likely to do it at any point in time. Not to mention, if enough stuff has gone through the insurance by this time for K, then E’s tests will be free (we’re going to have him tested for the Vesicoureteral Reflux, too, just to be sure since it runs in families). Not that S doesn’t pay for it, of course, it’s part of his wage package.

So, anyway, stuff for me has started to roll in saying “patient responsibility: $0.00″ which is totally awesome. I’ve also learned some interesting things about insurance and hospital charges and what not.

For example, they charge you for every little thing. It’s ridiculous, really. Ok, K’s still got the feeding tube, right? Well, there’s two parts to it. The first goes down in her stomach and at the end outside of her body it has a little cap that you can close. It’s rather short in length and it’s changed once a week. Then there’s another tube that she gets that connects to that one then to the large syringe that goes onto the machine that squeezes the milk out at the rate the nurses specify. That second, longer tube is changed on either a single or bi-feeding basis. It depends on how much she is getting because sometimes they can fit two feedings into one syringe. Of course, she just went up on her feedings so I don’t think they can get more than one in there anymore. But anyway, that second tube? They charge you for each one individually. There’s a little yellow sticker that the nurses pull off of the package and they stick it on a piece of paper that has places for these stickers. It’s a daily charge sheet. And each sticker has a bar code on it. Each day she gets a new paper. You see where this is going? I’d love to see an itemized charge for her stay, there will be anywhere from 6 to 12 of those little tubes on there each day. I can’t figure they cost very much but think about all the things they use on her!

The hospital bill from my one night in February was itemized. They tested me for crud I didn’t know they were testing me for, such as gonorrhea (which I don’t have, big surprise). Looking at the symptoms online, I can see why they tested for it, but funny no one said anything about it. That test cost $138. They charged $1.60 for a single prenatal vitamin. Funny, considering I can get 100 of the same thing for about $8 or 8 cents a piece. They charged $12 for these stupid maxi pads they made me wear and $11 for a 2 pack of those really annoying mesh underwear things. Yeah, ladies, you know what I’m talking about! Those pads aren’t even comfortable or good quality and most got thrown away unused, yet they always make you use them.

Give me a break, it’s amusing to me. Though I know I wouldn’t be finding these charges funny if I was actually having to write out a check to pay for them!

Also interesting is something the financial lady in the doctor’s office said to me. She was showing me the charge from the day K was born and said something to the effect that the insurance company tells them what they can charge and then pays it. So that’s why I’m seeing a charge for, say, $637 total for doctor B to consult with me one day in the hospital and then it says discount $399.28 and net payment $213.95 and coinsurance applied $23.77. Coinsurance was what we had to pay for that particular day since we hadn’t reached our cap yet, net payment was what the insurance paid, and then discount was what the doctors’ office wrote off because they found out they weren’t going to get it anyway. At least that’s how I understood it.

However, when that same lady asked me who did my delivery, she was NOT amused when I laughed and said, “no one, but Dr. B was running down the hall.” She probably thought I was going to ask for a discount or something. That one totally bombed. Nope, they wanted $2,285 for that but only got $1,015.45 from the insurance (and nothing from us).

The insurance also had to pay $430 to the anesthesiologists for that stupid epidural. If I had to pay anything on that I think I’d dispute the charges after what they put me through. Three tries and then no medication while the second anesthesiologist is trying to get out of the door in a hurry is NOT acceptable. But, whatever!

And, finally, some people are just idiots!
We got a bill some time ago from a pathology company and, this one really confused me at first, because it stated I’d seen a Dr. M in the hospital in February (when my water first broke) and the first day of my 3 week stay and I know for a fact I hadn’t seen him. They were actually billing us for 2-12, 2-13, and 3-23. It was the first bill we’d gotten from them at all and I knew I hadn’t gotten an insurance statement telling me we were going to owe this $367. And to make it all the more interesting, they were saying that we were 30 days overdue on $146 of it. The $146 was applied to only part of 2-12 but then the rest of it, $221, from 2-12, 2-13, and 3-23 was “current.” So, of course, I’m going “what the heck?” I called our insurance company and, sure enough, they had received nothing from this company. So they told me to call them and tell them not to bill me, but to send it through to the insurance company. I called them around 11:30am on a Friday but they were closed so I left a very detailed message. To date, 7 weeks later, no one has called me back and they still haven’t billed the insurance. Yet, they’ve sent through other new charges from 4-10! I guess they don’t want their $367! Because heck if I’m paying it.

They’re not the only ones to do that, either, it seems. Sort of, anyway. K has, as of today, received her first bill, from 3 visits with the eye doctor. They also billed us directly but put in the description that our insurance reported back that K is not covered with them. I would have had another “what the heck?” moment if it hadn’t been for the fact that over the last several weeks, the pediatrician’s office has been calling and saying they’re having problems with our insurance company, too. The insurance company was reporting back to us, however, that K is indeed covered, and have them call them. So I gave the pediatrician’s office the number and emailed them a copy of the insurance card. It’s been a week now since I heard from them, I hope it’s ok. But so I had to call these people today and leave them a message that she IS covered, you need to call the insurance company. Of course, now that I think about this, since he’s an eye doctor, it might be another ball game. We do have eye insurance but it might not be included with the rest. Oh, well.

So there you have it. If you wondered why I’m so scatterbrained lately, there is one reason!

And, blah, blah, blah. It was either waste some time writing about something incredibly boring or go clean out my closet. What would you have picked? :P