The other day we went for Kayleigh’s second annual renal scan, VCUG, and another ultrasound. As we’ve been seeing all along, her left kidney is enlarged and the ureter from it is quite kinked and twisted. She’s also had the reflux from the bladder up to the kidneys on both sides, graded as a 3 (so mid-grade). The doctor has been confident that the reflux will fix itself and, as we found out the other day, the right side has. That’s really good, however, her other kidney has shown no sign of improvement. It seems to be holding steady where it is, doesn’t seem to be worse, but it’s certainly not better.

To date, she has, thankfully, not suffered any infections. However, the doctor says that since the kidney has not gotten any better at this point, he does not expect that it will ever. He says that if it continues in this way, eventually it will start losing functionality. At this point, it functions fine – a little slower than the other kidney (I think he said 15 minute), but it functions. The doctor cannot predict when the kidney might lose function, it could be in a few months, it could be a couple of years. But he doesn’t want to risk that at all and has scheduled surgery on the ureter/kidney/bladder later this month. This surgery is to fix the ureter, straighten it up and fix the reflux from the bladder upward. Should we do nothing and the kidney start to lose functionality, she’d eventually have to have surgery to remove it, anyway. So it feels like a no-win situation, she’s going to have to have some surgery one way or another. So we will be following the doctor’s recommendation to fix this before it can get worse, and get this over with.

Needless to say, I’m nervous and I’m probably going to get more nervous as each day goes on. The surgery itself should not be very long but she will have to stay in the hospital one or two nights and there will be a relatively large incision in her back, and a tube to drain with from the incision. I’m not sure I totally understand that, but I know they will explain it better for me later. He talked like the tube would not be there long.

We are both worried, in addition to the surgery, about the hospital stay itself. There is no way Kayleigh is going to let someone make her sit in a bed for longer than 3 seconds. If she’s not sleeping, she’s on the go. I am worried about the tube a bit, too, because of her activity level but the doctor seems to think it won’t be a big deal. (I’m wondering how well he actually knows my child.)

I feel bad, too, that she has to go through all of this, especially without understanding why. The other day was the second time she’s undergone sedation since coming out of the NICU. Neither time was fun, far from it. Because of the sedation, she can’t eat for a good 8 hours or so beforehand and a little tiny kid like this does not understand why her parents aren’t feeding her, or why she can’t even have something to drink. She’s a good baby most of the time, really she’s quite good-natured, I cannot imagine how it would be with a crankier kid. We were to register at noon the other day and then go for her ultrasound (which she also screamed bloody murder during because she didn’t want someone to hold her down, even for something so non-invasive as that) then to be sedated and have the other two tests done. That would have put us around 12:30 if they got moving. We were seated in the waiting room after the ultrasound at 12:20 and the guy comes and tells us that we are set for “1:15 to 1:30.” Seriously!? A hungry child who hadn’t had anything to eat since about 5:30am and they were going to make her wait… in a children’s hospital! Just as I was starting to really boil, he came back and said that they were going to get us in “early.” Maybe they heard her crying and realized what they were doing to her, I don’t know, but it was a good thing.

This time was a little different, too, in that they didn’t just take her from us as she screamed. They said one parent could go back and be with her while they put the mask on. The mask would initially put her to sleep and then they would set the IV and catheter, administering the actual sedation medicine through the IV. So Steve indicated towards me and I kind of whispered that I didn’t know if I could – I was about to lose it at that point. He didn’t hear me and the anesthesiologist repeated what I said and I just burst into tears. So Steve went. He said it was nothing, that he was just there while she fell asleep, it was very quick. But he couldn’t look at me or he would lose it, too.

So if I am this upset about sedation with an IV and a catheter and a simple test with ultrasound or x-ray, whichever it is…? What am I going to do when they are going to be cutting my baby’s back open? Yes, this will be our second surgery, she had the fundoplication and the g-button put in shortly before coming home from the NICU, but I think this is harder than that was (on me). I don’t know why…

We’re going to do another ultrasound, renal scan, and something else I can’t remember what it’s called but it involves a catheter, in late September or early October. This is going to be fun because she’s older now so she’s going to have to be sedated… and by “fun” I mean so totally NOT fun. But it has to be done because we’ll need to find out how that kidney is functioning, a year after the last scan. Of course, we hope it is the same or better. Worse will probably mean an imminent surgery. The same or better means we just keep monitoring it like we are now.

As for the ears, she had a hearing test today, which is, from what I understand, standard after a preemie is a year old. Well, we actually had half a hearing test as she would do part of it but wouldn’t let the lady do the other part. The part that she did do, however, had good results and she said she’d send them to the pediatrician who would decide if we should try again any time soon, or in 3 to 6 months like the lady recommended. Not sure how 6 months would make K better behaved and want to let people stick things in her ears, but, whatever. I think that if they do want to reschedule, I’ll see if we can do it closer to home. We really felt like we wasted a 140 mile trip for that today.

Speaking of which, I am so tired of going to Children’s Hospital. That is where we go for the kidney stuff and I’m glad it’s not more often or for anything else. I guess it’s just the downside of going to an inner city hospital but I am so tired of the traffic, the rudeness of the security guards, the horrible cafe, limited parking, etc. Yesterday I just kept thinking of how glad I was that K was in the other hospital (where we did the hearing test) for 3 months and not Children’s. They are probably the same distance away but the other one, Steve and I both love it, it may not be geared towards kids but we think it’s better.

Plus, one of the things yesterday that really annoyed me was that when we were walking in, we were in between two groups of adults without children, yet the security guard saw fit to yell across the lobby to me, someone who had a baby and another minor with her and would have appeared to have more of a reason to be there than those other adults without children, and single me out and ask me what my business was there. Honestly, I think it was some racial discrimination, I don’t understand why else he should not have had all of those childless adults sign in and get guest tags like they’re supposed to and yet pick on me.

As I sit here and think about this, though, I am a bit baffled. As I remember it in September, he was telling me about the function levels and that he was confident K would grow out of the urinary reflux. I guess it’s not really any different now, but I just feel like we took an extra 3 months to get to a conclusion we should have had in September. He was saying then that he was confident she wouldn’t need surgery. Nothing I can do about all that, I guess, just move forward, but it’s a little confusing for me.

So we shall see what we shall see. Hopefully the next ultrasound will show that the kidney is not growing too big. However, if she’s going to need surgery, I’d rather she get it now than have to deal with that when she’s older. He did say that at this point it’s not really an emergency or anything (hence following up in February). Of course, ideally it would be best if the ureter would straighten itself out! He wouldn’t say that the twisted ureter was the cause of the large kidney, but he said that the two are “intimately connected.” It’s also hard for me to wrap my head around that but I THINK that it means that the ureter contributes to the slower drain of the kidney but that until the ureter is fixed it means the doctor cannot say if that is the cause of the large kidney or not.

By the way, the photo was taken just before we left to go to the hospital yesterday. Kayleigh is modeling the sweater and bonnet made by Birgit‘s mum. It’s so sweet, I love it, and I melt when K wears it. :) Just something about a baby in a bonnet, heehee.
I’m glad we actually got it, too, as it was lost in the mail for a few months before finally showing up!!

And yes, I know I suck with my email and RSS reader. It’s catch-up time again, very soon!

K had her renal scan today, and what a day it was. We arrived at 11:15am. I’d skipped breakfast because I was in a hurry… I would live to regret that. Her appointment wasn’t until noon, but they wanted me to arrive at 11:30 for check-in. So, of course, I was early, and they were behind schedule. Surprise, surprise. I waited a bit, taking the time to feed Hungry Girl, then they checked us in and we go back to the waiting room. About ten after noon, some lady comes back to tell me it will probably be another 15 minutes, they’re running behind. Annnnnnd before I can stop her, this woman grabs my baby’s hand and starts oogling about how cute she is and rubbing her under one cheek. Of course, K is just eating up the attention and sitting there smiling and making noises. As soon as that woman left, out with the baby wipes to wipe any germs off. Sounds insane, but it’s what I’ve gotta do.

The woman 3 seats down from me was polite, however, she asked if she could look. So she came and looked from a decent distance and didn’t try to touch. I appreciated that. She was called away and another woman took the seat 2 down from me. She was wearing a surgical mask over her face, sort of had it pulled down. Immediately she’s talking to the woman across the aisle, of sorts, a very vocal woman who had been ranting about how long she’d been there, for one. She walked in right before I did, so I had been there just as long. She’s talking about her kid, saying he’s had some infection or something and they’ve had to drain fluid. I’m not paying attention, I was working on Sarah’s scarf (crochet), until I hear the words, “and I don’t know how contagious he is.” I tell you what, I didn’t need a mirror to know what my face looked like. I looked right at her with this utter shock then pulled my kid (in the stroller) closer to me and inched into the corner, lol. And at this, Surgical Mask says, “oh they got these masks up there, they’re so hard to breathe in though.” When I inched away, I guess she got the message, she put the mask on all the way and moved down another seat.

I mean… THINK A LITTLE PEOPLE. Gosh, it’s a friggin children’s hospital. You know you’re going to be surrounded by kids and babies. If you think you’re contagious or that your kid is, take some precautions instead of just joining everyone else.

Anyway… at least another 15 minutes later they took us back. I was not prepared for the long visit, first the waiting and then, “…it will take about an hour and a half…” I apparently still have Pregnancy Brain, I completely forgot they were going to have to give K an IV for this. I was still thinking of the test she had when in the NICU that was just a catheter.

However, despite there being two of them and my helping hold K down and doing my best to keep her calm, it still took about a half an hour to do the IV. Poor little baby. It’s so traumatic when you don’t know why things are happening, “WHY is there this pain in my hand?” Not to mention, it took two tries. They couldn’t get it in her left hand and ended up getting it in the arm. And not to mention, it always hurts worse when you tense up.

The poor little thing calmed down when that was over and she actually got to a happy place and was laying there “talking” up a storm, cooing and just plain being all happy. Then came the catheter. She screamed just as bad for this, maybe worse. It also took two tries. They had to call in someone else for this one. Poor poor little baby. When that was all done and she was ready to go, they strapped her down with these velcro straps. Pretty much all she could do was turn her head and wiggle her toes. They slid her in to the x-ray machine. I was able to give her a bottle as she lay there but she didn’t take much. She didn’t like being strapped down at first but she started to just look around and after a little bit fell off to sleep.

They ran some dye through her IV so they could watch on the computer screen what her kidneys would do as far as draining. This test went for 20 minutes. After that, it was sent up to the doctors who then decided that, yes, they wanted her to get the second one. So a doctor came in and gave K a diuretic then ran the test for another 25 minutes.

When all of that was said and done, she was slid out of the machine and that woke her up. Then it was time to unhook everything from her. I swear, she cried and screamed the most for removing the IV. Poor baby didn’t like the catheter being removed either but at least that was done very quickly. It was funny, too, that the little stinker managed to have a poopy diaper through all this. She’d had a lot of tape for her IV though so removing that was not fun and she ended up with a very sticky arm and blood on her sleeve.

While they sent the results to the doctors to review, I had a chance to run to the cafe since I hadn’t eaten yet. It was after 3 before I got down there and even then I had to stand by the sandwich counter forever while three guys ignored me, though they knew I was there. Finally I got some food and scarfed it before heading to the office.

Then, it was more waiting. Finally, though, the doctor came and he felt her kidneys, he said that even through all that and the fact that I’d fed her half a bottle again after her tests, he couldn’t feel that her kidneys were hard. Apparently this is a really good thing. He then showed me the images and explained how, and here is what it has taken me forever to say: K does not need surgery!!

The kidney that is bigger and holds more fluid apparently still functions at 47%. Sounds bad, but that’s 47 out of 50. The other kidney picks up that remaining 3% for a total of 53%. In other words, from what I understand, it means that the larger kidney functions perfectly fine, it’s just a little slower than the other. If you remember back to when she was in the NICU when they did the initial tests to see how the reflux was, the doctor there told me that he pegged that kidney to be at 10 to 15% functional. It’s nice sometimes, when doctors are wrong! But back to her children’s urologist, he believes that at least a big part of this is caused by the reflux up into that kidney. Apparently her ureter is quite twisted and kinked. He believes that both refluxes are grade 3′s instead of one being a 5, and that both will fix themselves within a few years. From what I understand, the area of the kidney that holds the fluid in the large kidney can get better as the reflux fixes itself and the ureter straightens out. He said there is a very low chance that K would need surgery. The only reason she should need surgery is if her reflux doesn’t start to fix itself. They’re going to follow her with periodic ultrasounds and she might have to have another renal scan in 12 to 18 months. So she’ll go back in December for an ultrasound and hopefully over time we will see improvement in the reflux.

I cannot say just how awesome this is, though. That little girl has been through so much in her short life so far, I am really glad she doesn’t need surgery. Of course, she will stay on the daily antibiotic to ward off infections until this clears up, but that’s nothing compared to surgery. I don’t mind going in so often for ultrasounds, either. :)

K went to the children’s urologist the other day and it was his opinion that her urinary reflux isn’t as bad as the other hospital said it is. We were initially told that one was a grade 5 (worst you can have), this guy puts both at grade 3′s and he is confident she’ll grow out of this problem within a few years. He said that he doesn’t put them at grade 5 because her x-rays don’t show reflux immediately but after her bladder actually gets full. However, he also said that he figures the first doctor said it was a grade 5 because of how the actual kidney looks. We were told that that particular kidney had a lowered function, but they weren’t sure how low. In about 4 weeks, K will get a renal scan which will tell the doctors what sort of function this kidney has. Does it work as it’s supposed to, despite there being too much fluid in there? Or is it functionless? Somewhere between? After the renal scan we will know more. The functionality of this kidney will determine whether or not she needs surgery. Apparently it has more fluid because there’s a blockage and the scan will tell us if that blockage needs to be taken care of or not. I assume that if she does get that fixed they will also go ahead and fix the reflux at the same time.

But that’s the haps, brothas.

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!