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Posted: 10/8/2007 10:27:00 AM EDT
[Last Edit: 10/8/2007 10:49:20 AM EDT by mpscout69]
Everybody,
Dino sent me an IM and I realised that I hadn't updated anybody on whats going on. Jillian is 17 days old today, and is still having a rough time of it.
It appears that her heart, specifically her left ventricle is massivley muscled. This causes the area that can be filled with blood to be alot smaller than it should, meaning her heart can't pump the amount of blood that it needs to. She is on drugs to keep her blood presure up, but they can cause the heart to work harder, causing more muscle growth. She also has very bad valves and has a hole between her ventricles. To top it all of her aorta tapers to almost nothing, and most of her blood is flowing through the duct that unborn babys have to bypass the lungs. This causes some unoxygenated blood to flow back into her lower extremities. They are watching her blood-oxygen level both above and below her heart to make sure her lower organs are getting the oxygen they need.
She is still on a ventilator. She is on an oscillating ventilator that keeps her lungs inflated all of the time and kind of shakes the air in and out of her lungs. The constant inflated lungs causes more pressure on her heart, but they have tried her on a normal ventilator twice both times with bad results. Her lungs keep filling with liquid because of the heart back-flowing and she has to be suctioned out alot. They have replaced her air-way tube at least 4 times that I know of due to blockage by these fluids and mucuos snot. One of the good things about that is that they were able to get a bigger breathing tube in than the original because she has grown a little.
Her head ultra sounds have all come back normal, with no bleeding in her brain like they'd expect in such a premature baby. Everything else on her is working like its supposed to, too. Because she's on so much medication her body is swollen right now, and they are trying to get some of the swelling down.
It looks like we've got a long, hard road ahead of us. They actually called us in last Thursday night because they didn't think that she'd make it through the night. It turns out that she needed to have her lungs suctioned out.
Her brother and sister went to see her Friday night, and since then she's had a couple good days. (By good I mean no major set backs) They keep her pretty heavily sedated right now because she gets really pissed off when they mess with her. Even sedated she moves more than they want her to. She seems to be a pretty stubborn and determined little girl, which is exactley how I want her to be.
Mom is doing okay, still can't put her shoes and socks on, but I help with that. Emotionally we're a little frazled right now (as you could expect) but we're holding our own. Her father is flying in this weekend, and my parents have already been out here to see her.
Thanks everybody for everything, here's one of the latest pictures of her:
Link Posted: 10/8/2007 10:33:47 AM EDT
Brother, i've been in your shoes.

Just be the best daddy you can and take care of your little girl. But you already know this.

If she takes after her daddy and is a stubborn little snot, then that's a good thing. Thankfully mu daughter did. It got her through some very rough times.

You'll be alright.

Link Posted: 10/8/2007 11:04:55 AM EDT
Im thinking good thoughts for you guys
Link Posted: 10/8/2007 11:10:44 AM EDT
My family will keep her in our prayers for you. Thanks for the update.
Link Posted: 10/8/2007 11:11:50 AM EDT
She's off to a pretty rocky start. I hope she can be put right. She certainly deserves a lucky break.
Link Posted: 10/8/2007 11:58:53 AM EDT
Jillian has been, and will remain in our families prayers until she is able to be home with her family.

Keep up the good thoughts and hope, even the littlest ones can feel that when you are with them and will draw strength from you and your love.

Take good care of each other and let us all know if you need any help with anything.
Link Posted: 10/8/2007 10:14:22 PM EDT
Your daughter is in my prayers tonight..
After she pulls through this, just think how fun the Terrible 2's are going to be!
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