Chromosomal Test Results

       We received test results from our baby's Chromosomal Micro-array test.  They indicate that he is NORMAL.  yea!   It still leaves us wondering why we found the extra list of symptoms for Trisomy 18 after he was born, why he has some of the symptoms, and why we felt like we were supposed to get the extra test done.  Who knows!  I still hesitate to get my hopes up until some of the symptoms clear up, but it is great news!  Now he just has the kidney test to go through next week. Poor kid!  He has already been poked and examined so many times in his first 2 months of life, we sure love him though and are so grateful he is in our family.
---mom

2 1/2 Weeks Old

     Updates? We scheduled the big radioactive dye kidney test for mid July--there's a chance it will resolve itself by then, so here's hoping.
     We keep running into problems with the massive chromosome test (multi array). One minute they say they don't have enough blood, the next they say it's fine. Now they say they don't have enough again. Honestly, we don't know if we'll keep trying. We felt good about doing it originally, but don't feel it is as necessary anymore. Don't get me wrong, we'd still love to rule out other chromosome issues, but it's not as high a priority right now. We'll see how we feel after the weekend.
     So, how's he doing? Well, he's eating, pooping and sleeping. Oh, and peeing. (Can't forget that) He still sleeps a little too much, and it's hard to get him to eat enough since he falls asleep as soon as he starts eating, but we're feeling more comfortable with how he's responding and stuff. Though he still struggles to breathe some times. It's almost like an asthma kind of wheeze, but if he calms down and doesn't stress about it, he does better. (ever try to get an infant to relax and not stress about the fact that they feel like they can't breathe?)
     Mom is an amazing trooper. Some nights she has to wake him up to feed him, other nights he's up every 1 1/2 to 2 hours to eat. I am constantly in awe at the sacrifices she makes to keep our baby healthy. Somehow she keeps on going. I get four times as much sleep, and I still feel like a zombie some times.
     Many thanks to everyone for your prayers and concerns. What an amazing outpouring of love we've felt. Love you all.

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.

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.

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!

Good News!

     Had another ultrasound on Thursday.  Our baby is still growing - great news!  The doctor said his heart looks great, no defects or holes, which is a really good sign, plus no signs of external physical defects either.  His right kidney is still having troubles, but his left one seems to be functioning well.  The doctor says the baby's chances of having Trisomy 18 is now down to about 1 % since he is still growing.  Of course, we can't tell how his brain is functioning, but since he is having a lot of hiccups, it's a good sign that he is practicing breathing.  Yay!!
--The mom

Miracles

     Recently we shared with a woman about our possible trisomy child and she told us that her child had a rare disorder called albinism, and is having trouble in school because of her failing vision. Wonder of wonders, we met a young woman last summer with the same disorder, who is also going blind (who, by the way is an amazing young woman--always cheerful and loving despite the fact that she has very poor vision and knows she'll be blind very soon).
     We spoke with the young woman we'd met last summer, and she eagerly asked the name and contact info for the child with albinism so she could help her through her trials. Her mother became an advocate of sorts for children with albinism.
     Isn't it amazing how our life experiences can bless others in so many ways.