Tuesday, September 8, 2009
We've moved!
That's right, kids. Our new home is eichefam.net. Get all your up-to-date (as up-to-date as busy parents can manage, anyway) Namine news there from now on!
Thursday, August 20, 2009
Holy Crap
It's been a looooong time since an update. I apologize for that, and I can only hope that we still have some readers! Jessica and I are without an internet connection at the moment. I don't really know how long I have to post this, either. It all depends on when "linksys" realizes someone is borrowing his internets. (Although judging from the default settings, it'll be a while.)
So, lemme give you a quick rundown of the happenings here: Namine turned one year old, that's the biggie! Our little girl is getting big, and quick. She's pulling herself more and more with her arms, but she's also moving her legs, as though to crawl. Getting stronger by the day, that's for sure. She's eating more, and she loves cheese puffs, but we only recently found out she's actually allergic to cheese. Maybe also to other dairy, so we're steering clear of all of it for the time being.
Namine recently had a sleep study done to determine if she can do without the vent at night. The results came back to us just yesterday, and with good news! So last night was the first night in a long time that she slept with no mechanical intervention whatsoever. (The oxygen and humidity, in my mind, do not count.) I think she slept better than she ever did with the vent. At any rate, she did extremely well.
Lastly (at least that I can think of), Namine will soon be having her foot (feet, actually) operation soon. Should be scheduled within 2 weeks, so perhaps she'll have it sometime early next year. After that, we'll see how she does with putting weight on her legs - that will determine whether or not she needs further operation on her legs.
So, lemme give you a quick rundown of the happenings here: Namine turned one year old, that's the biggie! Our little girl is getting big, and quick. She's pulling herself more and more with her arms, but she's also moving her legs, as though to crawl. Getting stronger by the day, that's for sure. She's eating more, and she loves cheese puffs, but we only recently found out she's actually allergic to cheese. Maybe also to other dairy, so we're steering clear of all of it for the time being.
Namine recently had a sleep study done to determine if she can do without the vent at night. The results came back to us just yesterday, and with good news! So last night was the first night in a long time that she slept with no mechanical intervention whatsoever. (The oxygen and humidity, in my mind, do not count.) I think she slept better than she ever did with the vent. At any rate, she did extremely well.
Lastly (at least that I can think of), Namine will soon be having her foot (feet, actually) operation soon. Should be scheduled within 2 weeks, so perhaps she'll have it sometime early next year. After that, we'll see how she does with putting weight on her legs - that will determine whether or not she needs further operation on her legs.
Thursday, July 2, 2009
Birthday Surprise!
Namine is doing awesome. She is having a blast with her new kid kart and is just enjoying the summer.
Her birthday party is all ready and everything just needs to be set up, which we can't do until Sunday. I pray that we have a day of sunshine so that we can be outside.
Her cakes are ordered and food is all taken care of. If I missed anyone on the invite list and you would like to come just call us or email by Saturday.
We wish everyone a Happy Fourth of July. Thanks to all of the troops that have served, are serving and those that are still in training. Thanks to all of those that gave their lives to help protect and serve our country.
God's Blessings to everyone.
Love,
Jessica, Paul and Namine
Her birthday party is all ready and everything just needs to be set up, which we can't do until Sunday. I pray that we have a day of sunshine so that we can be outside.
Her cakes are ordered and food is all taken care of. If I missed anyone on the invite list and you would like to come just call us or email by Saturday.
We wish everyone a Happy Fourth of July. Thanks to all of the troops that have served, are serving and those that are still in training. Thanks to all of those that gave their lives to help protect and serve our country.
God's Blessings to everyone.
Love,
Jessica, Paul and Namine
Monday, June 29, 2009
Birthday Party!
Wow! We get to celebrate a very deserving and happy 1st birthday. Long ago over a year ago we were told that she might not make it this far, but she has and she is doing better than anyone can believe. She is the joy of our lives and the happiness that never goes away.
She is doing fabulous. She doesn't have to be on the vent except at night. She is stating perfectly and she is learning to move. We don't have another doctor's appointment until the beginning of August so we are home free for a couple of months. We are celebrating her first birthday next weekend, and her reaffirmation of her baptism.
We can't thank all of you enough for the prayers that have stormed heaven, but we have another request for prayers. One of my friends from school is pregnant and there was a little blood in the uterus. Pray that all goes well and that the baby is happy and healthy.
Love,
Jessica, Paul and Namine
She is doing fabulous. She doesn't have to be on the vent except at night. She is stating perfectly and she is learning to move. We don't have another doctor's appointment until the beginning of August so we are home free for a couple of months. We are celebrating her first birthday next weekend, and her reaffirmation of her baptism.
We can't thank all of you enough for the prayers that have stormed heaven, but we have another request for prayers. One of my friends from school is pregnant and there was a little blood in the uterus. Pray that all goes well and that the baby is happy and healthy.
Love,
Jessica, Paul and Namine
Wednesday, June 10, 2009
Finally:)
Sorry everyone for not posting more often. It has been quite a hectic past couple of months. Namine has been home since March and doing great. We spent two days in the hospital for heart monitoring and they called it equipmentitis. She has been stating in the low 90's to even 100% O2 stats at the cardiac visits.
We are slowly weening her off of the vent and she is up to about 12 hours on the trac collar during the day and the vent only at night. She is up to about 2 hours on the HME which is awesome. She hasn't gained any weight and she has grown an inch and a half.
The biggest news that we have is that at our last trac vent clinic they gave her a Passy-Muir speaking valve. She loves it. She is only allowed to use it twice a day up to ten minutes each time. She gets mad when you take it off, but it is hard work to have on so she usually poops out after we take it off. If you do not know how the valve works it is a little device that goes over her trac like a trac guard, but when you breath out it blocks the hole so that the air is forced around the trac and into the wind pipes. It isn't hard to breath in, but is difficult. As she builds up more of a tolerance to it she will be able to be on it longer.
The other news that we got it that she is behind in her physical activities. Which we already knew from being in the hospital so long, but the one that we were worried about the most she is right on track.
We have moved to a lower apartment, so our delivery men just love it. It is a bigger apartment and now we have Namine's crib in our room. She loves sleeping in her bed more than the playpen.
Well everyone she is awake and getting kind of angry that I am not paying attention to her so I am going to let you all go. I hope you all had a fabulous Mother's day and a great Memorial Day weekend.
God's Blessings to you all. I can't say it enough but thank-you for all of your thoughts prayers and concerns. Keep storming heaven not only for our bundle of joy but for everyone out there. Our troops near and far, our neighbors, pastors, teachers, delivery drivers, friends and enemies. God is watching and answering.
Love,
Jessica, Paul and Namine Eiche
We are slowly weening her off of the vent and she is up to about 12 hours on the trac collar during the day and the vent only at night. She is up to about 2 hours on the HME which is awesome. She hasn't gained any weight and she has grown an inch and a half.
The biggest news that we have is that at our last trac vent clinic they gave her a Passy-Muir speaking valve. She loves it. She is only allowed to use it twice a day up to ten minutes each time. She gets mad when you take it off, but it is hard work to have on so she usually poops out after we take it off. If you do not know how the valve works it is a little device that goes over her trac like a trac guard, but when you breath out it blocks the hole so that the air is forced around the trac and into the wind pipes. It isn't hard to breath in, but is difficult. As she builds up more of a tolerance to it she will be able to be on it longer.
The other news that we got it that she is behind in her physical activities. Which we already knew from being in the hospital so long, but the one that we were worried about the most she is right on track.
We have moved to a lower apartment, so our delivery men just love it. It is a bigger apartment and now we have Namine's crib in our room. She loves sleeping in her bed more than the playpen.
Well everyone she is awake and getting kind of angry that I am not paying attention to her so I am going to let you all go. I hope you all had a fabulous Mother's day and a great Memorial Day weekend.
God's Blessings to you all. I can't say it enough but thank-you for all of your thoughts prayers and concerns. Keep storming heaven not only for our bundle of joy but for everyone out there. Our troops near and far, our neighbors, pastors, teachers, delivery drivers, friends and enemies. God is watching and answering.
Love,
Jessica, Paul and Namine Eiche
Sunday, May 24, 2009
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 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
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
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
Monday, April 27, 2009
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 before Easter and we brought her into the ER on Maundy Thursday. We only had to stay for six hours and then they let us go home. So you can only imagine the excitement that both Paul and I had when she was home for Easter. We weren't the only ones that were excited either for her being home. Everyone was able to come over to our little apartment and see her in her little dress. I don't think Paul has had a chance to get the Easter pics up yet, but hopefully tonight he will be able to.
We have our first GI visit today to see how her g-tube is working and make sure that it is not infected and that it is filled properly. We also have many appointments in may for upcoming surgeries that Namine is going to have to have. We meet with Dr. Denni on May 18 to see when she can have her jaw distraction and clef palate repaired. When both of those are done pray really hard because then she will most likely be decanulated, or trac removed. YAY!! The other appointment we have is to meet with Dr. Tommetz to see what and when they can do surgery on Namine's legs and hips.
She is a very happy little girl. She loves being home and having visitors. We have gone for a couple of walks. She still doesn't tolerate her HME for very long but she does enjoy the outside. We love to take her out on the balcony and just watch her soak up the sun. She loves it. This past weekend we went outside on the balcony and I had her sitting on the table and I was holding her up and she kept slapping my arm and I finally looked when she rubbed my arm that she was trying to get the shadow off of my arm.
Well it is time to get Namine ready for her appointment so I will try and keep everyone updated. If I don't just email me and say HEY where are the updates. My email is jleiche@gmail.com
Well have a fabulously wet Monday and I will talk to you all later. Keep us in your prayers and please check out Jacob Jeremy Shultz's caringbridge site. There is a little girl that passed away on the 26th. Please keep her family in your thoughts and prayers, along with everyone that we have on our site, Stephanie and Jacob.
We love you all,
God's Blessings,
Jessica, Paul and Namine Eiche
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 before Easter and we brought her into the ER on Maundy Thursday. We only had to stay for six hours and then they let us go home. So you can only imagine the excitement that both Paul and I had when she was home for Easter. We weren't the only ones that were excited either for her being home. Everyone was able to come over to our little apartment and see her in her little dress. I don't think Paul has had a chance to get the Easter pics up yet, but hopefully tonight he will be able to.
We have our first GI visit today to see how her g-tube is working and make sure that it is not infected and that it is filled properly. We also have many appointments in may for upcoming surgeries that Namine is going to have to have. We meet with Dr. Denni on May 18 to see when she can have her jaw distraction and clef palate repaired. When both of those are done pray really hard because then she will most likely be decanulated, or trac removed. YAY!! The other appointment we have is to meet with Dr. Tommetz to see what and when they can do surgery on Namine's legs and hips.
She is a very happy little girl. She loves being home and having visitors. We have gone for a couple of walks. She still doesn't tolerate her HME for very long but she does enjoy the outside. We love to take her out on the balcony and just watch her soak up the sun. She loves it. This past weekend we went outside on the balcony and I had her sitting on the table and I was holding her up and she kept slapping my arm and I finally looked when she rubbed my arm that she was trying to get the shadow off of my arm.
Well it is time to get Namine ready for her appointment so I will try and keep everyone updated. If I don't just email me and say HEY where are the updates. My email is jleiche@gmail.com
Well have a fabulously wet Monday and I will talk to you all later. Keep us in your prayers and please check out Jacob Jeremy Shultz's caringbridge site. There is a little girl that passed away on the 26th. Please keep her family in your thoughts and prayers, along with everyone that we have on our site, Stephanie and Jacob.
We love you all,
God's Blessings,
Jessica, Paul and Namine Eiche
Saturday, March 28, 2009
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 to have, and she's thrilled to be home.
Physical therapy (which comes to our apartment to see Namine) is very pleased with her progress, and has encouraged us to massage her face, in order to strengthen her face muscles. Namine, of course, does not mind being massaged - she seems to enjoy it very much. Namine is getting stronger every day; I've uploaded a new batch of pictures, and some of these feature Namine sitting up all by herself. Stil a little wobbly, true, but on her own none the less.
So hop on over to the picture gallery, and ooh and ah over our beautiful baby girl. And leave a comment here for us. We'd love to hear from you.
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 to have, and she's thrilled to be home.
Physical therapy (which comes to our apartment to see Namine) is very pleased with her progress, and has encouraged us to massage her face, in order to strengthen her face muscles. Namine, of course, does not mind being massaged - she seems to enjoy it very much. Namine is getting stronger every day; I've uploaded a new batch of pictures, and some of these feature Namine sitting up all by herself. Stil a little wobbly, true, but on her own none the less.
So hop on over to the picture gallery, and ooh and ah over our beautiful baby girl. And leave a comment here for us. We'd love to hear from you.
Friday, March 6, 2009
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 and are keeping her there until they can figure out what is going on.
Today when I came in I took her temp and it was 39.9C so for the rest of you that is 103.4F. Not good. They gave her some tylenol to see if that will help but she is just so uncomfortable that she won't even look at me. I kissed her on the cheek and she rolled her eyes at me and turned her head the other way.
I feel so bad that she is sick. Paul and I have a theory that the reason she keeps getting sick when we bring her home is because of the re-use of suction cathetors. I am going to talk to Dr. Gordon and see if he can make it so that we can get at least double what we are allowed so that this doesn't happen again.
I wanted you all to know about Namine and what is going on. We love and miss you all. Keep praying that everything goes well.
Love,
Jessica, Paul and Namine Eiche
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 and are keeping her there until they can figure out what is going on.
Today when I came in I took her temp and it was 39.9C so for the rest of you that is 103.4F. Not good. They gave her some tylenol to see if that will help but she is just so uncomfortable that she won't even look at me. I kissed her on the cheek and she rolled her eyes at me and turned her head the other way.
I feel so bad that she is sick. Paul and I have a theory that the reason she keeps getting sick when we bring her home is because of the re-use of suction cathetors. I am going to talk to Dr. Gordon and see if he can make it so that we can get at least double what we are allowed so that this doesn't happen again.
I wanted you all to know about Namine and what is going on. We love and miss you all. Keep praying that everything goes well.
Love,
Jessica, Paul and Namine Eiche
Friday, February 27, 2009
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 I can tell you that our little munchkin scrunchkin adores being home.
We've been to the doctor twice; once for her cardiology clinic, and once for a suck-swallow study. Both went fine. Not only that, but we can officially start feeding her baby food!
You'll notice the site has changed again. In trying to iron out some of the problems people have been having, I decided to start over. I've tested this new layout in every browser on Windows and Mac that I can think of, and I don't see any problems. Commenting should be a breeze now, too. If anybody still has issues, shoot me an email: peiche at gmail.com.
I've uploaded a bunch of new pictures, which you can see on the blog page or the external photo album. And yes, there are pictures of her at home in this batch!
I'll upload a bunch more videos when I get home tonight. Actually, it probably won't happen until most of you are asleep, so look for them tomorrow.
On a somewhat personal note, I laughed so hard when someone at work complained about how much work their (normal) baby is. Sister, you have no idea.
I will say, though, we are extremely, extremely fortunate that Namine sleeps through the night. It's the machines that keep us up (or wake us up). The apnea monitor we haven't had a problem with, but that stupid vent alarms when there shouldn't be any. Low pressure, my foot. Namine just pushes air around the trach, creating that low pressure. Oh, well.
We've been to the doctor twice; once for her cardiology clinic, and once for a suck-swallow study. Both went fine. Not only that, but we can officially start feeding her baby food!
You'll notice the site has changed again. In trying to iron out some of the problems people have been having, I decided to start over. I've tested this new layout in every browser on Windows and Mac that I can think of, and I don't see any problems. Commenting should be a breeze now, too. If anybody still has issues, shoot me an email: peiche at gmail.com.
I've uploaded a bunch of new pictures, which you can see on the blog page or the external photo album. And yes, there are pictures of her at home in this batch!
I'll upload a bunch more videos when I get home tonight. Actually, it probably won't happen until most of you are asleep, so look for them tomorrow.
On a somewhat personal note, I laughed so hard when someone at work complained about how much work their (normal) baby is. Sister, you have no idea.
I will say, though, we are extremely, extremely fortunate that Namine sleeps through the night. It's the machines that keep us up (or wake us up). The apnea monitor we haven't had a problem with, but that stupid vent alarms when there shouldn't be any. Low pressure, my foot. Namine just pushes air around the trach, creating that low pressure. Oh, well.
Wednesday, February 18, 2009
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 great having her home. We have been playing and singing and all sorts of stuff.
Namine loves to sit up and be in her boppy chairs, watch spongebob and play with her toys. Paul will upload some pictures of her being home when he gets home.
I need to get back to her it is almost time to eat. Call anytime:)
Continue to keep praying for us we still have a long road ahead of us. Love and hugs to all of you!
God's Blessings,
Jessica, Paul and Namine Eiche
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 great having her home. We have been playing and singing and all sorts of stuff.
Namine loves to sit up and be in her boppy chairs, watch spongebob and play with her toys. Paul will upload some pictures of her being home when he gets home.
I need to get back to her it is almost time to eat. Call anytime:)
Continue to keep praying for us we still have a long road ahead of us. Love and hugs to all of you!
God's Blessings,
Jessica, Paul and Namine Eiche
Thursday, February 12, 2009
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 was supposed to come home Sunday and she couldn't because she was destating Friday night. She was supposed to come home on Wednesday but she was destating again on Tuesday night. She had a sleep study because of the destates and while doing the study she was destating, so no home again. Because they can't figure out why she is destating she will be here until they figure it out.
I have prayed, cried, prayed some more and I don't know what to anymore. My heart is aching for the day to bring her home. I have to trust that God is watching out for her and that He is guiding the doctors hands and minds to make the best decisions for her. We love her with all of our hearts and we want the best for her.
I hope that all is well with everyone. Continue to storm heaven for our little angel and we will be home soon. God's Blessings to all of our guests.
Love,
Jessica, Paul and Namine Eiche
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 was supposed to come home Sunday and she couldn't because she was destating Friday night. She was supposed to come home on Wednesday but she was destating again on Tuesday night. She had a sleep study because of the destates and while doing the study she was destating, so no home again. Because they can't figure out why she is destating she will be here until they figure it out.
I have prayed, cried, prayed some more and I don't know what to anymore. My heart is aching for the day to bring her home. I have to trust that God is watching out for her and that He is guiding the doctors hands and minds to make the best decisions for her. We love her with all of our hearts and we want the best for her.
I hope that all is well with everyone. Continue to storm heaven for our little angel and we will be home soon. God's Blessings to all of our guests.
Love,
Jessica, Paul and Namine Eiche
Monday, February 9, 2009
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 she will come home soon. Oh warm weather please leave so we can not have Allergies.
Alright that was my little song. It was quite interesting. You should have been here while I was singing. :) Namine did not come yesterday because they wanted to run a couple of tests to find out why her heart rate has been high this past week, and to see if she had an infection in her leg. Well nothing has come back out of the ordinary with Namine, but as you can tell from above Paul is sick again.
They are going to give him until Wednesday and then they are going to send her home. It is just non-stop sickness. If we aren't sick she is. I hope that you all have a Happy Valentine's!
God's Blessings to each and everyone of you and the prayers that have reached heaven are being answered. We love you even if we don't know you, we thank-you even if we don't know, we appreciate you even if we don't know you. God is listening and answering and giving us miracles over and over again.
Love,
Jessica, Paul and Namine Eiche
Alright that was my little song. It was quite interesting. You should have been here while I was singing. :) Namine did not come yesterday because they wanted to run a couple of tests to find out why her heart rate has been high this past week, and to see if she had an infection in her leg. Well nothing has come back out of the ordinary with Namine, but as you can tell from above Paul is sick again.
They are going to give him until Wednesday and then they are going to send her home. It is just non-stop sickness. If we aren't sick she is. I hope that you all have a Happy Valentine's!
God's Blessings to each and everyone of you and the prayers that have reached heaven are being answered. We love you even if we don't know you, we thank-you even if we don't know, we appreciate you even if we don't know you. God is listening and answering and giving us miracles over and over again.
Love,
Jessica, Paul and Namine Eiche
Friday, February 6, 2009
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 uping the amount that they want to give her but her belly just can't tolerate all of that food as fast, and if they slow it down she will be eating all day long. So I hope that they have it all figured out.
I am not able to be there for rounds today because I have to wait for the oxygen to be delivered, but I am going to call and find out what they have to say just to make sure that Sunday is still the day.
Well keep praying for us and we will try our best to keep you all updated. Our love and God's blessings to all of you!!
Love,
Jessica, Paul and Namine
I am not able to be there for rounds today because I have to wait for the oxygen to be delivered, but I am going to call and find out what they have to say just to make sure that Sunday is still the day.
Well keep praying for us and we will try our best to keep you all updated. Our love and God's blessings to all of you!!
Love,
Jessica, Paul and Namine
Thursday, February 5, 2009
Not Home Yet
First off, my apologies. We've been a little lacking in updates, I know. We've been a little busy. Wednesday has come and gone, and Namine is not yet home.
Monday night, Namine was not doing too well - she was throwing up frequently, and so the doctors were not comfortable sending her home the next day. They did a floroscopy (I hope I didn't butcher that too badly) yesterday to see if the G-tube is in the right place. It is placed correctly, so we're not sure why Namine's not tolerating her feeds.
When she gets the Pedialite or partial-strength feeds (part formula and part Pedialite), she's fine. When her feed is just formula, she throws up, either out of her mouth or backing up out of the G-tube. Could be she just isn't comfortable with this new one, but at this point no one knows.
I would love to tell you when she's coming home, but I can't. Doctor Gordon (the special needs doctor we're in touch with the most) was running around like a chicken with its head cut off yesterday, so he wasn't able to give us a lot of answers. I hope we'll be able to find out more today.
Also, on the topic of the website: I know a lot of you are unable to post comments, for whatever reason. I believe I've narrowed down why and hope to fix it soon. I'm sorry for the inconvenience.
Monday night, Namine was not doing too well - she was throwing up frequently, and so the doctors were not comfortable sending her home the next day. They did a floroscopy (I hope I didn't butcher that too badly) yesterday to see if the G-tube is in the right place. It is placed correctly, so we're not sure why Namine's not tolerating her feeds.
When she gets the Pedialite or partial-strength feeds (part formula and part Pedialite), she's fine. When her feed is just formula, she throws up, either out of her mouth or backing up out of the G-tube. Could be she just isn't comfortable with this new one, but at this point no one knows.
I would love to tell you when she's coming home, but I can't. Doctor Gordon (the special needs doctor we're in touch with the most) was running around like a chicken with its head cut off yesterday, so he wasn't able to give us a lot of answers. I hope we'll be able to find out more today.
Also, on the topic of the website: I know a lot of you are unable to post comments, for whatever reason. I believe I've narrowed down why and hope to fix it soon. I'm sorry for the inconvenience.
Tuesday, January 27, 2009
Home On Monday!
Hello Everyone,
Namine is coming home on Monday, February 2nd. Great Grandpa has a great birthday present:) Namine is doing well. She has recovered surprisingly well after having this heart surgery. She is down to 30% oxygen not only on the vent but on her trac collar and doing fabulous. She is stating in the low to mid 80's. They have her doing two 60 minute trials and they are bumping her up to 90 minutes tomorrow, and when she comes home we are going to work her up to more of her regular schedule of 5 hours collar, 2 hours vent, 5 hours collar and vent over night. The doc's would like to see her back on her regular schedule of collar for 24 hours but that is something that we have to work up to.
On top of her heart surgery two weeks ago she has 4 teeth on the top that are trying to work their way through. She has two teeth on the bottom that have come through, how exciting, but let me tell you she bites hard. She is so cute.
Yesterday Namine needed an IV put in so that she could go for her MRI of her shoulder today and she is a hard stick. She got so upset last night that she decanulated herself. Decanulated means removal of trac. She was crying so hard and with the vent pulling it just came out. Paul and I worked quickly and got a different one back in. It was scary but Paul and I are an awesome team and work better than a well oiled machine.
Namine is doing great after her MRI and hopefully we will hear results tomorrow and then we will update you all when we find out.
We can't thank you enough for all the prayers and support that you have given. We will continue to give updates over Namine's obstacles. Keep praying we still have a long road ahead of us.
Love and God's Blessings,
Jessica, Paul and Namine Eiche
Namine is coming home on Monday, February 2nd. Great Grandpa has a great birthday present:) Namine is doing well. She has recovered surprisingly well after having this heart surgery. She is down to 30% oxygen not only on the vent but on her trac collar and doing fabulous. She is stating in the low to mid 80's. They have her doing two 60 minute trials and they are bumping her up to 90 minutes tomorrow, and when she comes home we are going to work her up to more of her regular schedule of 5 hours collar, 2 hours vent, 5 hours collar and vent over night. The doc's would like to see her back on her regular schedule of collar for 24 hours but that is something that we have to work up to.
On top of her heart surgery two weeks ago she has 4 teeth on the top that are trying to work their way through. She has two teeth on the bottom that have come through, how exciting, but let me tell you she bites hard. She is so cute.
Yesterday Namine needed an IV put in so that she could go for her MRI of her shoulder today and she is a hard stick. She got so upset last night that she decanulated herself. Decanulated means removal of trac. She was crying so hard and with the vent pulling it just came out. Paul and I worked quickly and got a different one back in. It was scary but Paul and I are an awesome team and work better than a well oiled machine.
Namine is doing great after her MRI and hopefully we will hear results tomorrow and then we will update you all when we find out.
We can't thank you enough for all the prayers and support that you have given. We will continue to give updates over Namine's obstacles. Keep praying we still have a long road ahead of us.
Love and God's Blessings,
Jessica, Paul and Namine Eiche
Tuesday, January 20, 2009
Forth to the fourth
Hey everybody. Namine has been moved up to the 4th floor. This seemed like a pretty sudden thing, since Jessica got to the PICU room yesterday and they said, "hey, we're moving her upstairs!" But actually, the doctors tell us that recovery time after the glen procedure is a lot shorter than it was after her first heart surgery. Namine may be able to come home at the end of this week; on the other hand, it may be a few weeks before coming home. We'll let you know.
Friday, January 16, 2009
Almost all tubes out. Also, pink!
So Namine's trach was put back in, making her a much happier baby. Her chest drainage tubes were also removed; her left and right arterial lines were removed, but the one in her arm is still in. They also made sure that her new G-tube is in correctly before they start feeding her. They may do that tonight, but tomorrow morning is more likely. She's down from 12 pumps to 3. Less equipment is always a good thing.
You'll notice I've changed the overall color of the site. I hope it's pink, I can't really tell. ;)
I have also changed the tab links at the top. Click the photos and videos links to see!
You'll notice I've changed the overall color of the site. I hope it's pink, I can't really tell. ;)
I have also changed the tab links at the top. Click the photos and videos links to see!
Thursday, January 15, 2009
Post Tube Addition
After they put an additional drainage tube in, Namine's stats improved significantly. Her temperature is a little high, but that may just be an effect of having surgery (especially heart surgery). She was still quite sleepy while we were visiting her, although she did open her eyes a few times, only to decide we weren't worth waking up for. :)
We suspect she's still quite uncomfortable. She has a line in her right shoulder, which is her bad shoulder, and her right hand is still hooked up to a lot of other tubes. She's still intubated, which we well know she hates, and they have her left arm restrained because she already tried extubating herself. Oh yes, we know we have a fighter on our hands.
Tomorrow they plan to put her trach back in, so they can extubate her. They also plan to start feeding her again.
We suspect she's still quite uncomfortable. She has a line in her right shoulder, which is her bad shoulder, and her right hand is still hooked up to a lot of other tubes. She's still intubated, which we well know she hates, and they have her left arm restrained because she already tried extubating herself. Oh yes, we know we have a fighter on our hands.
Tomorrow they plan to put her trach back in, so they can extubate her. They also plan to start feeding her again.
Wednesday, January 14, 2009
Another Chest Tube
This morning the hospital called us. Namine 's chest was draining some more fluid, so they decided to put another tube in to control the drainage. Other than that, she's doing fine.
Tuesday, January 13, 2009
Surgery Finished!
We're here in the waiting room. Namine's surgeon just came out to tell us that they've finished, and everything went extremely well. All parts of the surgery went as planned; there was a little bleeding near the end, but they kept that under control. The nurse said that once she was taken off the bypass machine, her heart started beating on its own again. That doesn't always happen, and the nurse told us, "you've got a little fighter, you know." (Oh, yes, we know.) Now they've closed her chest back up and will soon be in the PICU, where we can see our baby girl again.
Thank you, everyone, for your prayers and support. God has truly blessed us!
Thank you, everyone, for your prayers and support. God has truly blessed us!
Saturday, January 10, 2009
Surgery Finally
Namine is going on Tuesday finally for her heart surgery that has been long awaited. She is the first case on Tuesday morning.
Namine had a hematoma on her right arm that burst on Thursday night. It was full of green and yellow puss and bled quite a bit, so they have it dressed up. They had to start her on antibiotics because they were not sure if it was infected or not. I pray to God that it wasn't infected, because if it was it might delay her heart surgery again. :( As far as we know right now she is still going on Tuesday.
Please keep us all in your thoughts and prayers and we will try and keep you updated. Love you all bunches!!!
GOD BE PRAISED!
Love,
Jessica, Paul and Namine Eiche
Namine had a hematoma on her right arm that burst on Thursday night. It was full of green and yellow puss and bled quite a bit, so they have it dressed up. They had to start her on antibiotics because they were not sure if it was infected or not. I pray to God that it wasn't infected, because if it was it might delay her heart surgery again. :( As far as we know right now she is still going on Tuesday.
Please keep us all in your thoughts and prayers and we will try and keep you updated. Love you all bunches!!!
GOD BE PRAISED!
Love,
Jessica, Paul and Namine Eiche
Thursday, January 8, 2009
Surgery Tuesday
Well, change of plans. Again. The doctors tell us that - for sure, now - Namine will be going for her heart surgery this Tuesday at 7:30 am. Jessica and I are none too happy about all the changes and about-faces that the hospital has done with Namine, but it looks like things are finally settling into a final schedule.
Monday, January 5, 2009
No Surgery Thursday
I went to the hospital today after work, and asked to talk to the cardiology department. (Let me catch you up here, in case you don't know.) They had said originally that Namine's heart surgery needed to be as soon as possible, and they wanted to do it last Friday. But her heart surgeon was going to be away all weekend; he wanted to be around afterward in case anything went wrong, so they said they would do it this Thursday. But then someone else at the hospital told Jessica that they were only going to talk about her surgery on Thursday.
So I went to the hospital after work. Cardiology said (they didn't bother actually coming to talk to me, they just told the nurse, who told me) that they are, for sure, only talking about her surgery on Thursday. So much for "she needs her heart surgery as soon as possible."
Hopefully we'll know more after tomorrow, when Jessica will have had a chance to talk not only to cardiology, but Namine's cardiologists themselves.
So I went to the hospital after work. Cardiology said (they didn't bother actually coming to talk to me, they just told the nurse, who told me) that they are, for sure, only talking about her surgery on Thursday. So much for "she needs her heart surgery as soon as possible."
Hopefully we'll know more after tomorrow, when Jessica will have had a chance to talk not only to cardiology, but Namine's cardiologists themselves.
Thursday, January 1, 2009
Surgery
Namine is scheduled for her heart surgery next Thursday. They had her on the schedule for this Friday but her surgeon was going to be out of town over the weekend and he wasn't comfortable with that so they moved her surgery. It is going to be a scary one. I know that the last surgery was scary, but this one is a lot more evassive and critical. We need you all to pray that God guides the surgeons hands and that all goes well. Thanks to everyone and Thanks to God!
Happy New Year! God's Blessings,
Jessica, Paul and Namine Eiche
Happy New Year! God's Blessings,
Jessica, Paul and Namine Eiche
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