Just a simple family's experience with the possibility of a child with Trisomy 18

Friday, May 25, 2012

1st Post-Birth Ultrasound


     Easton had his first ultrasound today. They were looking for problems with his kidneys (fluid in them, signifying that there is a blockage somewhere making the fluid back up in his kidneys. The last ultrasound while still in the womb revealed one bad kidney and one mostly good one), and trying to find his testes (remind me to delete this entire blog before he gets old enough to know I'm writing blogs about his testes).
     Results: He still has one bad kidney and one less-than-good one. We're scheduling more tests involving radioactive dyes (or something like that). And the testes aren't in the scrotum, though they weren't able to verify whether they are hiding up above or not. I guess we'll learn more about that as tests progress.
     And, if you can't tell from the tone of my writing, we're feeling pretty good. Yesterday was a down day, today got better. Yesterday we had to force him to wake up so he could eat, but he just went back to sleep instead of eating. It's tuff when that's one of the few things that we can actually do to help him stay healthy, and we can't make it work. But this afternoon he woke up again and decided he wanted to eat and stay awake. Hallelluyah! (or however you spell it.)
     So, we took him off the jaundice light last night, then tested him today and found that his levels didn't go up any. So we're keeping him off till the next test, tomorrow morning. If his jaundice levels still don't go up, then we'll keep him off the jaundice light. Another halleluiah (sp?)!!!
      And, since it's a holiday weekend, we'll call and schedule the further kidney testing on Tuesday. As far as the chromosome testing goes, there's another test they can do that checks just about everything (seriously, after this test we'll be able to know if he'll be a nose picker, a thumb sucker, left or right handed, if he'll like brunettes or blondes after his mission, and a rough estimate at his fastest time for the mile run). No, but seriously, it should answer any questions we may have about his chromosomes. It's expensive, but at least it will rule out--or tell us what's up. I think that test takes 3 weeks, so we won't know  the results for a while.
      Over all, we feel good. We're holding him instead of watching him glow on his light. That alone makes things feel so much better.

Wednesday, May 23, 2012

He's Here! !


     Sorry, this post is a week and two days late. Easton was born on May 14! He weighed 6 lbs. 11 oz. and has long fingers and toes. He spent an extra 3 days in the hospital nursery due to his inability to keep his temperature up, and elevated Red Blood Cell Count in his blood. Luckily, the hospital gave mom a free room, so she could stay and feed him as much as possible. He didn't show much interest in eating, and seemed lethargic--nurses say it's because of his high red blood cell count.
     But he came home Friday and was a ravenous wolf for a few days, eating every 1 1/2 to 2 hours. He's been on  a jaundice light since coming home (jaundice is caused by the breakdown of red blood cells, so it was inevitable for him since he had so many), which has made him more of a center piece in our home than a son. We all want to hold him, but we know that the more he is on the light, the sooner he'll get better so we can hold him all we want.
     We've gone back three times for blood tests to check his jaundice, and his blood is so thick that they couldn't get it from his heels twice (they had to get it intravenously through a vein in his head). So far, he still needs to be on the light.
     Also, his testes haven't dropped yet. We're told that if they don't soon, they'll give him a hormone to make his body do it. If that doesn't work, then they'll operate.
     We still don't know about the kidney issue, he's got an ultrasound soon to check it out. We do know that at least one is working, since he can and does urinate.
     But lately he hasn't been eating as much. It's getting harder to keep him awake long enough for him to eat. We're talking 6-7 hours between feedings.
     Both mom and dad kind of had a breakdown yesterday. We were fed up with the doctors talking about tests, but never giving ideas about what could be causing it all. So dad looked his symptoms up online, and all things pointed to Trisomy 18. Surprise, surprise. We knew it was a possibility, but since he was still growing and the rest of his organs are functioning (as well as we can tell), that he was in the clear. As you know, if you've read past posts, Trisomy 18 is a death sentence. Most (like 95%) die before reaching age 1.
     We had ordered a chromosome test a week ago, but hadn't gotten back the results yet. We didn't know for sure, but all signs pointed to it. It was really hard. You think you can prepare for it, with all the foreknowledge we had, but you can't.
      But two of my cousins just happened to stop by, and we shared our concerns and one of them helped dad give Easton and mom a priesthood blessing. Peace was felt, but hard to keep. Still, we know that Jesus Christ understands our pain, worries and fears. So we turned to Him.

Today we received blessed news. The chromosome test came back negative. Easton doesn't have Trisomy 18! It isn't 100% conclusive, but they're pretty sure. They're looking into a few more tests to check for other chromosome anomalies, but for now, all he has is issues--not a fatal condition. We can work with issues. He's not out of the woods yet, but we have hope.

Sunday, May 13, 2012

Still Not Here! !


     I don't know if I can deal with all the hype about him coming, and now it's 3 days after his due date and he's still not here!!AAhhg!
     j/k Actually it IS a little frustrating, but we know that the longer he is inside, the more developed he'll be. Of course, if he comes out with facial hair and a deep voice, that may be pushing it.
Can't wait!