Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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Jaw Distraction
Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of…
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Hospital
Hello Everyone, I just wanted to quickly update everyone. We had to bring Namine in on Sunday to the Hospital. She was having crazy heart rates. They still don’t know what was causing it and they sent us home today. If I get a video of her laughing and talking then I will have Paul…
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Craziness
Well it has been a crazy weekend and a crazy week ahead. Namine doesn’t have any appointments this week, but starting next Friday I think we have one every day for the next couple of weeks. I will try and take a whole bunch of pictures and put them up for everyone. I shouldn’t say…
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YAY for equipment changes.
Man oh man. If everyone were trained to make changes that would be exciting for us. We had a couple of doctors visits this past week and they made some vent changes. The first changes I could do myself, but the other changes neither Paul or myself could change so we have to wait for…
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Holy Cow Where Has The Time Gone!
Hello everyone, I am so sorry that we have not been keeping up on this. It is has been a long and fantastic ride being home. We have celebrated our very first holiday home!!!! YAY!! We almost thought that we weren’t going to be able to. She came down with a viral infection the week…
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Another delayed update
Well, kids, time for another update that should have happened over a week ago. Namine came home last week Monday, and she’s been doing great since. We’re still having the occasional low pressure alarms with the vent, but all things considered, I think we’re retaining our sanity quite nicely. Of course Namine is a joy…
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CHW
Hello All, Namine was home for a record of 16 days this time. Paul and I brought her in Wednesday night with a fever, loose stools and mega suctioning. They did a bunch of tests and pumped her full of fluids and she still had a slight fever. Yesterday the doctors put her on isolation…
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Has it really been nearly 2 weeks?
It’s still hard to believe we’re home. Namine is such a joy to have in the house – we’ve waited so long to have her all to ourselves. She’s almost always full of smiles, a couple nights ago being an exception, but anybody would be a little crabby with only 2 hours of sleep. But…
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I can finally say it, HOME!
God has answered and is still answering all of our prayers. He has been working miracles from day one. He is with us no matter what. I started this blog off the way I did because the rumors are true, Yes all of you that is right, Namine came home on Monday. It has been…
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Well What Can I Say.
Hello Family and Friends, Well it is a day that has come and gone. Namine was supposed to come a long time ago, but that day was pushed back for one reason or another. Then she was supposed to go home a different day that was pushed off for one reason or another. Then she…
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We Hate Being Sick!!
Warm weather what have you done. You have made our allergies go bonkers, bonkers, bonkers so my poor husband is sicker than a dog. He aches and sneezes his ribs hurt from falling on the ice, our room is littered with Kleenex (oh wait he picked them up). Namine is stuck at CHW I hope…
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SUNDAY!!!!!!
Sunday is the official day set by Doctor Gordon. We hope that Namine can start to tolerate her feeds all day by today, or I don’t know what they plan on doing. She did alright yesterday, but she did throw-up and we think it was just because her feeds are too close together. They keep…