just call me. apparently i am now a trained medical professional.
Last nite kendall pulled her tube out AGAIN. With the balloon still filled up AGAIN. and i was not even close to being willing to go back to the @(@##%@ ER AGAIN!! I noticed it was out when I went to get Kendall out of her car seat – it just popped out from her onesie, which was soaked with other various…uhhh, fluids, which were pouring out of the hole that USED to be plugged up with her button. So i ushered my little herd of
cats children inside, told them to eat up cause we were more than likely headed for a few hours in a hospital room, and called the surgeon. After BEGGING him to not send us to the ER unless absolutely necessary, he decides to walk ME through the steps necessary to re-insert her tube. Now I know that a lot of tube feeding moms are old pro’s at this – but I am not. Kendall’s stoma (tube site/hole in her tummy) is still not completely formed, so it’s kinda like throwing darts in a dark room still. I could see lots of pus, lots of formula, lots of bile, and one big black thing, which the surgeon assured me was just her stomach. It definitely put the vom in vomit. So yeah – I got the tube back in, blew the balloon back up with an appropriate amount of water (which it seems may be the problem, her balloon that holds the button in place from the inside seems to be leaking fluid regularly, allowing the balloon to shrink to such a size as is easier to yank out?), checked for stomach contents to make sure it had it in the right place, and then proceeded to worry the entire nite that i was flooding her abdominal cavity with formula. BUT WE AVOIDED THE ER!!!!! WWWAAAAHOOOOO!!!! that made me as giddy as a schoolgirl.
Then this morning we headed out early for Kendall’s hearing test. She, along with every other newborn born in a hospital in this state and i believe the other 49 also, did receive a newborn hearing screening test. She failed the first one in the NICU, but passed the second one they gave her right before we got to bring her home. Karissa also, oddly enough, failed her newborn screen, EIGHT TIMES, passing it only when they had already discharged me and i was about to wheel out of the place. Isn’t that a special coincidence? So given all of Karissa’s hearing issues, plus Kendall’s own lack of response to loud noises, inappropriate or inconsistent responses to other noises, and her lack of appropriate babbling, she was referred for a more in depth test. At this test for Karissa (and Kaylen as well), they were able to identify that there was some hearing loss going on due to fluid in the ears which would be resolved with the placement of ear tubes. I had thought that at worst we would maybe need to put tubes in Kendall too, and go about our merry way.
she failed all three tests. And by failed I mean she appeared to be deafer than a doornail. They were able to get MINIMAL responses from her left side, but the audiologist ANd her supervisor both were unable to get any kind of appropriate response from her right side. After trying and trying for close to an hour, they finally sat down and told me that there did appear to be a significant issue, and that we needed a further “gold standard” test to determine what kind of loss she has, and a possible cause. I don’t think any of this quite sank in in the office itself. It wasn’t until I was almost home and it occurred to me – she can’t hear me singing to her, she can’t hear the absolute chaos her sisters create, she can’t hear the normal everyday wonderful noises of life we all take for granted. And that made me so sad.
I realize that right now I am trying to put a whole puzzle together with only about a third of all the pieces i need. I won’t have those other pieces until we get the Brain Stem test (ABR) in August. And that is both hard to deal with, and yet reassuring. I have a whole month to try to absorb the fact that my child may be “deaf”. Hearing Impaird. Audiologically Challenged.
Now my own mommy instincts tell me that she can hear SOME things. I know she can. Could she have a bunch of fluid build up like Karissa and to a lesser degree Kaylen did? Yes – but I know it is a little more involved than that. Her body has been through so much, filled with so many life-saving yet ear-nerve-killing antibiotics, born with so many systems not quite ready to be functioning – for WHATEVER reason that is. There are a few theories that will be tested during the ABR test, and i guess there is a SLIGHT chance that it could come back completely normal, and that all of today’s tests were just random flukes. But i can’t hold on to that slim hope for right now. I have to be prepared for it to be something else, and if i talk about it enough, it will be less shocking when it becomes reality. I will always of course HOPE for the best for my baby girl – but I won’t ignore facts simply to make myself feel better temporarily.
If she has a hearing problem, we’ll tackle it head on. If she needs hearing aids, we’ll find the money for them somewhere. If she needs to learn sign language, we’ll all learn sign language.
We will make it through this hurdle as we’ve made it through all the past ones. It’s just this weeks bump in the road.
Because in a bit of GOOD news for once – she gained back the four ounces she had lost last week. She is a little more smiley this week, a little less cranky with pain. She is working SO HARD at rolling over – i know she’ll get there soon! She was able to endure a whole morning at the zoo without crashing (granted we shoved her full of pedialiyte proactively, but hey, the end result is still the same). She doesn’t seem quite as tired this week.
these are our “inchstones”. They will all add up someday to a “milestone”, but this is how our life goes. It’s the little things, the small victories.
Tomorrow Karissa has her followup dental appointment. I think at least two of her teeth will need to come out, with the other two being strong possibilities. My poor baby – she’s already so self conscious over her cast, and now she’ll be missing her front teeth – what a way to start kindergarten hey? And speaking of that – i finally FINALLY got them enrolled today! Just a shade under a month before school starts. Better late than never I always say…
ANyways – its been a long day. Thank God for the new Sonic by us. I needed all three cherry limeades i had today.
peace out homies.