They gave out t-shirts to the graduates, though, so K will have that to remember. Elijah went around and played a few games then he and Steve got some Ted Drewes. Trust me, I was jealous, I can’t have any. They had some other activities we didn’t get to visit, including karaoke. Not that anyone in our family would ever attempt that, but there were some kids actually singing and it was incredibly cute.

On our way out, Ronald McDonald was just arriving and he took some time to pose with E. Cracked me up because E just kept saying, “I didn’t know he was a real guy! I can’t believe it, I didn’t know he was real!!”

It’s really been a ride to go through these entries, not even a year later yet. It’s amazing how fast time has flown. Where did it all go? I can’t believe 2009 went so fast. And really, my heart melts when I look at those pictures of K from April and May… how did I get so lucky that she would go from this:

To this:

In only a few short months?

But, again, apparently the war isn’t over yet. We’ll see next month (hopefully) if she needs kidney surgery and in March, hopefully the neurologist will tell us she’s just fine. We shall see what we shall see… But in the meantime, I’m not worried, I know things will be fine.

Though, I also wish I posted here more. Obviously, there are times I need those entries to remind me of things. :P

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.

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!

Now (6-13-09):

Nod in approval, please. :)