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 the vent then we have been doing. She needs to be off of the vent completely for two months. When that is finished then they will run a series of tests to find out if the jaw distraction is what she needs and if it will help. The good news we have been pushing Namine a little harder to come off of the vent and she has been doing fantastic. She is up to about 8 hours off of the vent. She still has some difficulty with the HME but is slowly working her up on that as well.
More good news. We had a cardiac visit on the 22nd after about 3 other visits and all on her HME, I didn't think was doing very well, she was stating at 97. So that is just AWESOME!!!! And that stating is not even on the full amount of oxygen she needs. When she is on the HME the portable is supposed to be at 6, but we run out to quickly so Lori told us to put it at 3, and she was doing fantastic. Namine also kept pulling the mask off and chewing on it so i am not even sure how much oxygen she was getting. But like I have said in almost all of my posts keep storming heaven because miracles are happening with this little girl. She has touched the lives of many and because of her courageous story lives have been changed.
We love you all!
God's Blessings,
Jessica, Paul and Namine Eiche
Sunday, May 24, 2009
Tuesday, May 12, 2009
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 post it tonight. She is just so happy to be home.
Back to her heart rates. It was over 200 Friday morning and she had a fever so we brought her to the ER and she was fine, no fever nothing. We got home she puked and pooped all over and we changed her trac and she puked again. So we called the hospital to special needs and they told us to start the antibiotic. Friday night her heart rate dropped down into the low 50s, I would just nudge her and she shoot back up to 90. She also kept having apnea alarms on the vent so I didn't get any sleep. Then Saturday she was fine. Nothing:D or so we thought. Saturday night her heart rate dropped down in the 50s again and Paul nudged her and she shot up to 70 and dropped back down again and so he had to wake her up and then she was fine, but Sunday morning her heart rate was over 210. Again we called special needs and they told us to bring her in. They wanted to monitor her for at 24 hours, but they kept her an extra day for more heart monitoring with a halter monitor. No evidence at all of what we were talking about. Now we have to wait and see if anything comes back from the halter.
All I can say is she is home and as happy as can be. It is time to eat and get her ready for bed. I will try and keep you all posted and I will talk to you all later.
Thank-you all for the prayers and concerns. Keep storming heaven for our little angel.
God's Blessings,
Jessica, Paul and Namine Eiche
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 post it tonight. She is just so happy to be home.
Back to her heart rates. It was over 200 Friday morning and she had a fever so we brought her to the ER and she was fine, no fever nothing. We got home she puked and pooped all over and we changed her trac and she puked again. So we called the hospital to special needs and they told us to start the antibiotic. Friday night her heart rate dropped down into the low 50s, I would just nudge her and she shoot back up to 90. She also kept having apnea alarms on the vent so I didn't get any sleep. Then Saturday she was fine. Nothing:D or so we thought. Saturday night her heart rate dropped down in the 50s again and Paul nudged her and she shot up to 70 and dropped back down again and so he had to wake her up and then she was fine, but Sunday morning her heart rate was over 210. Again we called special needs and they told us to bring her in. They wanted to monitor her for at 24 hours, but they kept her an extra day for more heart monitoring with a halter monitor. No evidence at all of what we were talking about. Now we have to wait and see if anything comes back from the halter.
All I can say is she is home and as happy as can be. It is time to eat and get her ready for bed. I will try and keep you all posted and I will talk to you all later.
Thank-you all for the prayers and concerns. Keep storming heaven for our little angel.
God's Blessings,
Jessica, Paul and Namine Eiche
Tuesday, May 5, 2009
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 i will do it, Paul will do it because I really don't know how. I am not a PC and I am 29 years old. :)
Just a little update. Namine is doing great. She is growing and getting stronger she is not liking the vent a little more each day, but she is having a harder time breathing with allergies and what not that is going on. Plus having a trac makes her more susceptible to having lung problems. So even on nice days we have to be extra cautious. So if they tell people not to go outside we can't leave the apartment unless we absolutely have to.
We did bring Namine to church on Sunday. That is always an adventure. We always leave with enough time but somehow always end up late. It is really hard going to church with all of her equipment. We can't sit in the sanctuary we have to sit in the mother's room so it makes it difficult for me to pay attention, and you can't see the pastor.
I need to get her to sleep so I will have Paul post new pictures tonight and I will talk to you all later.
Keep us in your prayers and keep everyone that is sick in your prayers and as we have seen before miracles happen.
God's blessings,
Jessica, Paul and Namine Eiche
I will try and take a whole bunch of pictures and put them up for everyone. I shouldn't say i will do it, Paul will do it because I really don't know how. I am not a PC and I am 29 years old. :)
Just a little update. Namine is doing great. She is growing and getting stronger she is not liking the vent a little more each day, but she is having a harder time breathing with allergies and what not that is going on. Plus having a trac makes her more susceptible to having lung problems. So even on nice days we have to be extra cautious. So if they tell people not to go outside we can't leave the apartment unless we absolutely have to.
We did bring Namine to church on Sunday. That is always an adventure. We always leave with enough time but somehow always end up late. It is really hard going to church with all of her equipment. We can't sit in the sanctuary we have to sit in the mother's room so it makes it difficult for me to pay attention, and you can't see the pastor.
I need to get her to sleep so I will have Paul post new pictures tonight and I will talk to you all later.
Keep us in your prayers and keep everyone that is sick in your prayers and as we have seen before miracles happen.
God's blessings,
Jessica, Paul and Namine Eiche
Sunday, May 3, 2009
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 home care medical to come and change things, only they were supposed to come on Friday and never did. Now we have to change the vents around and that is a just a pain in the but.
On the Topic of Namine, though, the reason you come to the site, she is doing fabulous. And I can't remember if I told you that if she keeps stating in the low 90's like she has been no third heart surgery. YAY! But as for other updates, we are meeting with Dr. Dennie on the 18, and Dr. Tommetz on the 27th. When we find out what is going on we will definitely let everyone know. She has no appointments this week. We see Dr. Camarda on the 15 and hopefully they will be taking her off the lasix, that stuff is not helping I think. Namine is such a happy baby she is sprouting teeth and biting everything she can grip her little fingers around. She bites hard! She plays her alligator piano with her hands and her feet, she loves music. She sings along sometimes. She loves going out on the patio when it is sunny out. She is trying to figure out what shadows are. She kept hitting my arm, then she would rub it and then she was pinching it and I looked down and realized she was trying to get the shadow of the plant off of my arm. Namine has six teeth and two more coming in. She is going to have a mouth full before we know it. She was talking to her Auntie Mel today by saying "HI!" hi hi hi it was cute. She is waving and giving high fives. It is adorable.
I know that this message was much of a ramble, but I wanted to let everyone know what was going on. It is late and I am going to go to bed. We love you all and thank-you for all of the prayers. We ask that you keep storming heaven and we will keep seeing miracles.
God's Blessings,
Jessica, Paul and Namine Eiche
On the Topic of Namine, though, the reason you come to the site, she is doing fabulous. And I can't remember if I told you that if she keeps stating in the low 90's like she has been no third heart surgery. YAY! But as for other updates, we are meeting with Dr. Dennie on the 18, and Dr. Tommetz on the 27th. When we find out what is going on we will definitely let everyone know. She has no appointments this week. We see Dr. Camarda on the 15 and hopefully they will be taking her off the lasix, that stuff is not helping I think. Namine is such a happy baby she is sprouting teeth and biting everything she can grip her little fingers around. She bites hard! She plays her alligator piano with her hands and her feet, she loves music. She sings along sometimes. She loves going out on the patio when it is sunny out. She is trying to figure out what shadows are. She kept hitting my arm, then she would rub it and then she was pinching it and I looked down and realized she was trying to get the shadow of the plant off of my arm. Namine has six teeth and two more coming in. She is going to have a mouth full before we know it. She was talking to her Auntie Mel today by saying "HI!" hi hi hi it was cute. She is waving and giving high fives. It is adorable.
I know that this message was much of a ramble, but I wanted to let everyone know what was going on. It is late and I am going to go to bed. We love you all and thank-you for all of the prayers. We ask that you keep storming heaven and we will keep seeing miracles.
God's Blessings,
Jessica, Paul and Namine Eiche
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