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!