She’s back to being her typical punk diva, too. First things first, she goes for allllll the things she knows she’s not supposed to touch…

She did well and had a pretty good recovery then napped some then even seemed to be herself for a while and now is sleeping. I am hoping she sleeps all night but the nurse just came in to give her some pain meds and check on her so she’ll probably be awake in no time. She’s a very light sleeper normally anyway.

She’s hoarse though, which I hate because it just sounds horrible. Hopefully that will go away soon. She doesn’t seem to, at this point, have noticed she has an incision, stitches, gauze, etc., on her left back. She keeps getting tangled up in her IV lines. I will be VERY glad when those are gone.

There’s a very tiny tube that is helping to drain the kidney, it goes right into her diaper. She’ll have that removed in 7-10 days, after the ureter has had some time to heal.

We have so much support, it’s awesome. My mom and brother are here and with Steve they are getting us some early lunch. My aunt works here and she has already been over to see us and said she would be by again. Our church’s associate pastor was here almost from the start and he sat with us for a little while and then prayed with us. He said that the men prayed for Kayleigh at their breakfast this morning at 6am. All sorts of texts and Facebook messages coming to my phone.

K was pretty cranky, I imagine she’ll be 5,000 times more so when she comes out of surgery. We think she is teething, she’s been pretty cranky the last couple of days and has a runny nose. Then add to that the fact that she hadn’t had anything to eat or drink in a while and I think she remembers the hospital and that is upsetting her, too. THEN people were making her do things she doesn’t want to do like get her blood pressure taken. She screams bloody murder for any of that and even the hospital bracelet around her ankle was making her mad. Any time someone even looked at it she would freak out.

But every minute forward is a step towards this all being behind us…

Now it’s back to work. I brought my laptop specifically so I could work on photos from the wedding we recently shot. I figured, if nothing else, that would help me keep occupied and be thinking about something than what is going on right now in the operating room.

Getting nervous about the surgery, it’s less than a week away. Had some nightmares that something went wrong during surgery and we lost her. I’ll probably be a total wreck next week.

Getting a urine sample is never fun, either, but thankfully this went better (for K) than it did last time. For us, it was a pain. The nurses were setting up to do it and K peed all over the table. Back to the drawing board. We had to wait twice and try for a sample twice. I was also (frivolously) disappointed to have to change her clothes, not to mention I looked like a bad Mommy because while I had extra pants and a onesie, I have never thought to carry extra socks (never needed any before)! However, it wasn’t until we got home that I realized Daddy put her clean onesie on backwards. :P

Thank goodness for spare clothes, though! Marie and another friend recently gave me some for K. Good thing, we were getting low! K is finally starting to get past that 12 month size and slowly going towards some 18 months. E needs new clothes, too. I’ve realized that all his jeans are short in the ankles! They grow so fast. I got him 4 pairs of jeans at Goodwill (hey, can’t beat $8) and they look brand new. Two pairs are 6′s and two are 8′s. He needs a belt with the 8′s and they’re only slightly long. The jeans he was wearing that I’ve finally had to take away were size 4! One of those pairs is a light sand-like camo. He was really upset when I took those away this morning.

Stacey and I shot another wedding on Saturday and had a blast! I’ve been through a few of the images but hoping to really get started on them here in a little bit. Had some other sessions to go through first. She has several from her visit to Oklahoma to do, too. This wedding was interesting, though, in that while it was on a gazebo like the last one we did, we couldn’t get close to it. The gazebo was out on the water in a large pond (little lake?) behind a private residence. It’s at least 10 feet from the shore to the front part of the gazebo. So we stayed back on the shore with zoom lenses. From what I’ve seen so far though, we did well.

And again, I started this post hours ago and got distracted, so… :)

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…

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.