This morning, it was even higher at 101.4. So we called the doctor. Of course, our pediatrician is on vacation! Nothing against her (oh my, I love her like I’ve never loved a doctor), everyone needs a vacation! However, it just figures! The last time E and I were sick, our doctor was out, too!

However, they made an appointment for us to come in at 11:45. That only gave us an hour and forty minutes to get ready and get there, and we ended up being 17 minutes late. So we got to wait, some more.

Oh, yes, this is where parents everywhere are gasping that we bothered to take her to the doctor at this point. Let me explain. She had no other symptoms that we could see, so with someone with her kidney and bladder issues? She needs to be checked right away for infections in those areas. I honestly can’t remember the temperature limit we were told for bringing her in for this but when talking to the on-call nurse she said we should take K in. I think the limit is somewhere around 100 or 101. Oh, and this is K’s FIRST fever. I don’t even remember her having any in the NICU and she has, in her 15 months, not been sick.

It ended up taking all of our day to drop E off with Grandma and Grandpa, go to the doctor, finally get lunch around 2:30, get through the store, and pick E up again. E already hates going with us to K’s appointments and he’s not very accommodating so as soon as I heard they were going to need to give K a catheter, for a urine sample, I knew he had to go somewhere else.

Poor baby, it was no fun for her either. Since Steve had to hold her for her shots last week, I guess it was my turn to hold her to get her cath. I swear, she was mad at me for the next half an hour. It was no fun. Thankfully it was over rather quickly.

They tested it there and didn’t find anything that would be telling of an infection but sent off a culture in the lab. If I don’t hear from the office by Friday, I’m supposed to call. In the meantime, we’re just supposed to keep an eye on her fever. If nothing comes back from the lab, they’re just going to chalk it up to an otherwise symptomless fever. (I am pretty positive she’s not teething, the doctor didn’t see anything else wrong such as an ear infection, and it’s been too long since the shots for them to be the cause.)

We had lunch at a rather new place called Oriental Buffet and when we were finished, Steve went to pay while I took K in search of a changing table in the bathroom. Their restrooms are off a hallway that you have to go through a door to get to. Right in front of that door, my feet just went right out from under me and I went down. Thankfully, I landed on my left knee and, I believe, my right foot was still planted where it started. A Chinese man was on break and he came running when he saw me go down and helped me up. The floor was really slick there, I guess it could have been water, but it seemed to greasy for water. There were no wet floor signs out. I went on into the bathroom and, not finding a changing table, headed back out. Three of the ladies that worked there were hovering around the door. “Are you ok, are you ok?!” I said I was fine, but now my knee hurts. Boo. My back, too, but I think that’s from tensing up when I fell, making sure I didn’t drop K and such. She was completely fine, thankfully.

I’m not sure I mentioned this, but this is actually the second time I’ve fallen with her… in a month. Unreal. I think I tripped once with E when he was little and it wasn’t a big deal because we both landed on the couch. The last time with K, I was stepping off our patio onto the stepping stones. I misjudged the step and landed partially off the stone, into wet grass. That set me off balance and I went down to the left. I was carrying her in the left arm, and now I see it in slow motion, I was able to pull her close so her head didn’t crash into the concrete patio. That freaked me out big time. This time was not that bad.

Steve said I should watch my step better but I swear, this time it was not my fault!

First was the ophthalmologist on Monday. It was a bit disheartening that I had to pay $40 in co-pays, but we do what we have to do. For K, of course, there wasn’t really anything to do but take a look. This time… she was MAD about it, too. But things there still look good and it occurred to me that I haven’t seen her nystagmus in quite a while, probably not since maybe 2 weeks after her last appointment. While I’m a bit ashamed I didn’t notice before, I guess I have a case of “out of sight, out of mind,” but it’s great that we haven’t seen it in so long. The doctor says she’s also still doing a bit of the tilting of her head when looking at something, but I personally haven’t been noticing that as much, either, so hopefully it’s on the way out the door, too.

As for E’s eyes, he shows a very slight improvement. Rather, as for his eye, since the problem is only in the left eye. Having given glasses a two week trial, we now have to start patching his right eye. He has to start with a half an hour daily increasing to a couple of hours. He HATES it, though. So far, we’ve only done it 3 times and he’s willingly taken it, but starts to complain within the first 5 minutes. The doctor said he should watch TV or play a video game while wearing the patch. I’m really not sure why those are the activities to try during that time, but I think, in part, it has to do with his concentration. If I can get him to watch something he’s interested in, he’s less apt to complain about the patch… until a commercial!

On Tuesday, K went to the pediatrician for a check-up. She is now 17 lbs and 4 oz! The doctor said she was hoping she would get to 20 lbs by the time she’s 2 years old. She said something about it being a low goal to meet but, still, it had both of us thinking “whoa!” I am SURE she can gain those less than 3 lbs before April! It would be nice if she could do it by her next check-up in October, but I’m not sure she will, maybe by the end of the year, though. So her height and head circumference are on the “regular” charts (ie for kids who match her actual age, not adjusted) but her weight still is not. On one hand, we are not surprised, on the other, we are because she eats nearly constantly. We have also been giving her a lot of this Banana Apple Yogurt stuff from Beechnut because it has 120 calories per 4 oz jar and is the highest so far. We are in the process of transitioning her to whole milk, too, so I believe that should help. She’s up to half milk, half formula now. But in no way is this girl too little. She is SOLID and, at times, feels heavy to me. She’s strong, too. It’s hilarious to watch her try to lift things that should be too heavy for her, such as a half a bag of diapers. She held that thing up for several seconds, grunting, and her arm turning red, fist white, until she finally let go. She’s determined, too!

Up next should be another renal scan for K this fall, amongst a few other tests. It’s not been scheduled yet, but when the day comes, it is NOT going to be good. She’s going to have to be sedated this time – last time she was only 5 months actual (not quite 3 months adjusted) and once the initial terror of the IV and catheter insertions were over, she fell asleep. This time it will not be so easy. One of the things they do, once they are in place with all their tubes and wires, is to strap them down so they can’t move. After all, the x-ray machine has to do it’s job. K will absolutely HATE that and so, sedation, here we come. Not to mention, the doctor has ordered a blood test to be done the same day. We don’t have to do it the same day, but the hospital is approximately a 50 mile drive one way. (I had to look that up, I’m actually surprised, I thought it was farther.) We do have a hospital here and there’s another one yet between us and the Children’s hospital, but for blood draws the doctor recommends Children’s since they’re used to working on tiny veins. Of course, the place where she was in the NICU for those 3 months is awesome, too, but once you’re out of the NICU and into outpatient lab, it’s another story. Plus, again, we’ll already be at the Children’s hospital. Either way, it’s going to be a very long and tiring day. Sedation is NOT fun, as we discovered in March with the MRI…

It just seems that one thing after another is staring me in the face and I’m absolutely swamped. I have about a billion websites I’m supposed to be working on, several photo shoots that need to be processed and sent to the proper people, a couple of books I’m supposed to be making, lots of crochet projects… then there’s the every day stuff.

Well, one thing at a time. I’m only even sitting here at 2 am because I’m waiting for a very large batch of photos to upload. I finally got through all the photos my friend and I shot at my brother-in-law’s wedding 2 weeks ago. I did not give myself enough time to get through this, on the cards we gave out that told people when and where they could find photos. Next time I’ll remember to give myself more time! On the other hand, I had no idea that we were going to shoot 1900 pictures, either… We got a lot of good stuff though and I’m also going to upload some to Facebook, but that’s going to have to wait until tomorrow… er… later today.

In fact, I’m such a busy idiot that I double booked us this coming week for doctor’s appointments! K currently has an appointment in one hospital for a kidney ultrasound then consultation with the doctor at the same time she has an appointment in another hospital (30-60 min apart depending on traffic) for a follow up with the lung doctor and then the pediatric ophthalmologist, E is seeing the ophthalmologist, too! The lung and eye stuff was set first, back in December, which would be apparently why I didn’t have it in mind when I said “yes” to the other appointment which was set in March. So first thing Monday morning I get to change the kidney appointments, I think it will be easier to move those than the others. Ugh I’m just frustrated with myself.

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.

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: