Since she’s so little, it was quite the involved process. Since there’s no way she could stay still for them to look at her brain, they had to sedate her a bit. Because of the sedation, she couldn’t eat after midnight the night before. And because of the sedation, she also had to get an IV and be intubated. It really sucked. When they picked us back up at the waiting room, she was already awake and screaming her head off. She’d started to move around so the anesthesiologist had to carry her so she didn’t hurt herself moving around in the bed. She kept looking at me and would start crying all over again.

It was aggravating, too, because we got a later start so she was really very hungry and cranky when it got started, then afterward, they made her wait a bit then gave her 2 ounces of Pedialyte and still made her wait some more before she could have some formula.

I was very thankful when it was all over.

Now we have to wait for the results. I’m trying not to be anxious about hearing them. They told me that within 48 hours the doctor would have them, so that would be by Friday, and now Monday is over and we still haven’t heard anything. I’m trying to remind myself that he probably has a lot of patients and maybe hasn’t had a chance to look at them yet.

I was also very thankful that I didn’t have to see my baby intubated again. When she was born, it became the every day. She had to have it all the time. Then it went away and a few days before coming home, she had her surgery. She came out of surgery still intubated for a while. It was hard enough then seeing my (relatively) big baby on a ventilator again. She’s not quite double now what she was then, I am glad the intubation was over before I had to see it this time.

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. :)

Saturday night was progressing well enough. Elijah was already asleep in bed, it was about 9, I guess, when I was holding K and instinctively checked to make sure her G-button was ok. I felt it with my hand and it was in place. Steve came home from his friend’s house and fed K a bottle right at about 11. She fell asleep so he put her in her bed and I started preparing to give her the rest via her tube because she hadn’t quite taken enough by mouth. It ended up being about 1140 when I finally lifted her onesie to put it in and I was pretty darn surprised to find out it was completely gone.

Steve had already headed to bed so I got him back up and we started looking around for it. I found it on the floor right in front of the arm chair where I had been sitting with her earlier. So we figure it came out sometime between 9 and 11 and fell one of the times I got up to to put her in her bed (about twice), or Steve took her from me (once).

I called the 24 hour answering service and it turned out that the surgeon who had put in the button in the first place was on call and they were able to connect me with him right away. He instructed us to head to the emergency room. If this had happened in another 3 or 4 weeks or so, there would be no need for the ER but K hasn’t gotten to that 6 week mark yet. It has only been in about 4 and a half weeks so it’s not quite healed to the point where we can change it yet – not to mention, we haven’t been shown how to replace the silly thing. So the plan was that they would put it back in, inject some contrast dye to check placement, and we’d be on our way.

So to the ER we went. Poor Elijah, we had to wake him up and he was totally out of it. I explained to him what was going on and prodded him to at least get his sweat pants on and some shoes, I put his shirt on and got his church clothes in his bag. It wasn’t until we had left and driven 5 miles and were meeting Grandma at DQ to pass him off that he fully woke up. I had to explain it all over again. I’m really thankful that we have family – and friends – close who could take him in a time like this, I can’t imagine having to take the poor little guy with us, especially not after all K went through.

I think it was about 1 am before we got to the hospital. The ER was pretty empty and the main desk ushered us right through the (completely empty) Pediatric ER waiting room and into a treatment room. We did the basic stuff like get her vitals and change her leads from the ones she wears at home for her apnea monitor, to the ones they have in the Pediatric ER and get her undressed, etc. It was a little frustrating with the oxygen, however, because they couldn’t manage to find a pediatric gauge. They had ones that went from 1 liter of air to 5 but K is only on 1/8. So she stayed on our portable tank the whole time she was in the ER.

The doctor came in and got set up to get the new one in (which, by the way, I had brought with me because apparently I still have some sense about me) only… he tried… and tried… and tried… After all of his going on that it wasn’t a big deal, we’ll get that thing right in, blah blah blah, he wasn’t able to get it in. And poor K screamed the whole time. I was right there with her, helping her keep her pacifier in and giving her some sucrose but she was still, understandably, upset.

It became clear that the hole had already started to close up. So they went and got these catheters of different sizes to try and make the hole bigger again. She was mostly ok with the first two but the third really made her scream and that one wasn’t even quite as big as the actual button that needed to go in. He tried all three and they went in but then he still couldn’t get the button in. Finally, he gave up and talked with the surgeon who told them to admit her to the hospital – it was 3 am at this point – and he’d be there first thing in the morning to put the button back in.

So we got her admitted and headed up to the pediatric unit but not until after she got an IV. At this point, she hadn’t eaten anything since 11pm and even then not a lot and she wouldn’t be able to eat again until after the button was back in and placement was checked. She hated the IV as much or more than them messing with the hole in her stomach and she screamed. And, of course, the first lady couldn’t get the IV in the right hand first. She said she got it in, but it wouldn’t “thread,” whatever that means. So then someone else came in and did the other hand and was able to get it in. But at first it didn’t want to flush and K screamed for that, but then it did. In her room later, the IV kept beeping insanely loud and yelling that it was blocked somewhere. Never did find out why but it woke me up.

It was after 4 am when we got to sleep and the surgeon came in about 730 am. He woke me up and asked me some questions I answered coherently but can’t remember now and I dozed again until I heard K screaming. It took him 2 minutes or less to get that blasted thing in. They then had to give her some dye through the tube to make sure it went in her stomach and not elsewhere (they look at it on x-ray). It was good so we got to go home, very thankful K didn’t have to have surgery again. The poor baby slept for many hours afterward, until Elijah recently woke her up.

A bit confused? The surgeon told us that the balloon on the old one had broken. These things happen, they break sometimes or sometimes they leak slowly. This one broke. But maybe these pictures and diagrams will help a bit if you don’t understand.

That is what the button looks like from the outside, that was taken the same evening she got it in. (Hence the breathing tube.)

This was in the emergency room before things got traumatic. K was actually enjoying herself, lying there kicking her legs, being all good, sweet, and quiet… until they started messing with her. Don’t mind the black under her arms – that is caused by her leads for the home monitors. Stupid things dry her out, too, but you can’t do anything about it because you’re not supposed to put lotions and what not where they go.

The following images are diagrams to show you what the G-button looks like and how it is placed in the stomach. You’ll note the balloon I mentioned earlier. You’ll have to click the images once, then again to see full.

Well, I think that is pretty much it. I think besides K’s discomfort and pain, the most frustrating thing about everything was the fact that of the three departments we’ve been in there: NICU, Pediatrics, Pediactric Emergency Room, none of them can be bothered to have the same equipment. ER and Peds didn’t have oxygen regulators that the NICU has and had to get one from them for K in her room, none of the three have the same monitors so K had to get new leads in the ER then again in her room and neither of those match the NICU or the home monitor we have. The list goes on. I don’t understand why these departments at the same hospital can’t have the same equipment.

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.

Tuesday after the test was finished and the results analyzed and surgery was ready for her, a transport tech and nurse took Kayleigh down in a transport isolete (it has all the equipment she needs attached to it and portable); she looked SO big to me in that thing, it didn’t help that it was a smaller one than she used to spend all her time in. They put us in the pre-op room which was really weird and creepy for some reason, Steve thought so, too. So much for privacy laws, we got to learn a lot about the people around her in there, also waiting for surgery. We talked to the anesthesiologist and the surgeon before she went back. What was really cool was that the surgeon prayed over us before taking her back. It wasn’t some memorized, scripted thing, either, but a genuine, from the heart prayer. (I’m also thankful for our church’s associate pastor who came up in the morning to see me and K and prayed with us.)

We waited in the waiting room which was fulllll of people. Interesting how they do things, too, they gave us a little beeper buzzer thing like we were at a restaurant waiting for a table or something. It went off when K was done and out of her surgery and they led us to a room to meet with the surgeon. The whole time we were in the waiting room, though – about an hour and a half – I was pretty calm. Over the last few days it seemed like everyone I encountered was treating me like I should be just hysterical or something but I knew she’d be fine and I didn’t have anything to worry about, she’s in good hands in more ways than one.

After meeting with the surgeon, we headed back up to her room and were surprised to find that she beat us there. They were finishing up the transport – she came back on a ventilator, of course. During the surgery she was put on it so she would keep with the breathing, you know.

She was still on the ventilator when we left but after getting some dinner with Steve’s family (who showed up about a half an hour after she’d been back in her room) at the cafe, K was opening her eyes and such. The one thing I noticed, which really bothered me, was this look in her face that said, “why, in the name of all that is holy, is this stupid tube down my throat again!?!?!” I could tell she was a little freaked by that and she even gagged a few times. She was back to where she had been before though, unable to make any noise. She seemed panicked a bit at times. I hated that, I could tell she didn’t understand what was going on. But I was comforted in knowing it wasn’t permanent and that after it was removed, she’d forget all about it. They hoped to be able to remove the feeding tube within a few days – I was really hoping it wouldn’t be that long.

When I called to check on her later around 10:30 or 11, they told me they’d given her some more fentanyl because they thought she was feeling pain but she had a reaction to it. From what the doctor told me today, I learned that a reaction can happen at any time when you’re on it, even if you’ve been fine before. K was on fentanyl for the first several weeks of her life for both pain and to keep her sedated in those early days. He told me that the reaction was that it made her chest stiff so that suddenly breathing is very hard. So hard that they had to “bag” her – use the little green bag thing to force air into her lungs (like they did when she was first born. But she recovered well and the breathing tube was removed around 1:30 am! The doctor was impressed at how fast she was able to get off of the tube. Not bad for a little girl who requires oxygen!

I’m not sure how much you can see in the photo, but her G-Button is that white thing there on the left of her abdomen.

That photo above is from this morning. See the photos further above for last night. You can see how the tube snaps into the top of the white thing. The white thing, the “button,” turns. The nurse explained it in a good way I didn’t think of before – like when you pierce your ears. It eventually heals up to be a hole there that’s semi-permanent but leave out the equipment for a time and it closes right up. Inside her stomach is a little balloon filled with sterile saline water, that’s what holds it in place. I’m told that when she’s home we’ll be checking that water once a day.

The button with balloon has to stay in place 5 to 6 weeks for proper healing. (She’ll get the stitches out probably Friday.) After that you can change it, I think it has to be changed every 6 weeks, or earlier, of course, if something happens with it. You don’t want to change it before 5 to 6 weeks, either, otherwise you can push the stomach away from the abdominal wall which isn’t a good thing. From what I understand, if we’re comfortable with it, we can change the thing ourselves, or if we’re not, we can just take her in and they can do it in office. I am not sure I will be comfortable with that – and Steve is shaking his head lol – but then I guess you never know what you’re capable of until you’re actually faced with it. So we shall see what we shall see. But my hope and prayer is that when she hits that 6 week mark we won’t need it anymore and instead of changing it, we can just remove it. That is what I am really hoping for.

I think that’s pretty much everything as far as updates right now. She got the G-button and she got the fundoplication. The fundoplication should have immediate results, the acid reflux should be immediately stopped. Steve said he was concerned that she was still doing a lot of grunting when he saw her tonight (after I’d left). I had to remind him that she does the same grunting with acid reflux that she does when she is trying to get rid of gas or make a poop and this morning they had her G-tube venting because she did have extra air in. So hopefully that’s just it. I’d hate it if this didn’t fix the reflux like it should have.

Oh but I didn’t even mention it – he was able to do both laparoscopically which is so awesome. So instead of huge incisions she has those three little band aids you can see in the photos! Those should heal right up in no time. I’m not sure if he used all three for both surgeries or what but that is awesome.

I’m really admiring me some surgeon right now. Despite the whole cutting on people and blood being involved and other yicky things, even if I had the knowledge to do something like this, I don’t think I could do it – the whole someone’s life being in my hands feeling would be too much to bear. It’s been so great to hear all the nurses and doctors rave about this surgeon even before K’s surgery – several of them said to me, “if my kids needed something done, he’s the guy I’d want to do it.” Each and every one of them that praised his abilities as a surgeon also praised his character. And he did not disappoint.

Thanks, Dr. C. And the Lord, of course. I am so thankful this went over so well. Hopefully this will be the start of things going very well in the line of oral feedings.

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!

Now (6-13-09):

Nod in approval, please. :)