spoken for

I totally have what the nurses call NICU-itis. SO tired of being there. But we are getting closer to her coming home.

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.