I'm writing today's journal entry longhand in Namine's new room in the PICU (and typing it out much later). She's all situated here, and the nurse tells me that the doctors are very pleased with her progress, such as it is - so soon after her surgery.
Namine still has lines in her belly button, but they expect to take those out soon. She has two new lines, one in each hand, and an arterial line in her right wrist. In addition to the leads on her chest, the bloodflow monitors on her head and back, respirator, and the pulseoxes on her hand and foot, none of which is new, she has a tube for drainage from the surgery site in her side, plus two new monitors for blood pressure around her heart.
The sedatives, of which they are giving her less, are starting to wear off. I can see her squirming, and she has already opened her eyes a bit.
They have removed Namine's catheter, so she will be able to pee in her diaper (which, even though it's a preemie diaper, is still waaay too big) like a normal baby. (What, you didn't expect me to talk about pee here? This is a baby journal!) They have also put a tube down in her stomach, and will soon start giving her breastmilk. (To be sure, she's overdue. Jessica now has quite the stockpile!)
Her heart is steady, and she is a strong girl. Such a fighter! We'll keep you updated as things develop.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Surgery Done, Recovery Begun
The waiting room has a public-use computer, so I'm updating from there.
Namine is done with her heart surgery, and she is doing exellent. Everything the doctors hoped to do, they were able to do. The lead cardiac surgeon told us that it could not have gone any better than it did. Namine is now being situated and settled in her room in the PICU (Pediatric Intensive Care Unit), where we will be able to see her in roughly an hour and a half.
Thank you, everyone, for your thoughts and prayers. Someone obviously had His hand in today's events.
If I were writing this on paper, you would see teardrops spattering my words. But it's okay now; this time, they're happy tears.
She's not out of the woods yet - she has at least two more heart surgeries to go, plus her jaw and legs/hips/feet surgeries - but today is a major victory.
I'm going to go now, to wait with bated breath for the nurse to tell me I can see my daughter again.
Namine is done with her heart surgery, and she is doing exellent. Everything the doctors hoped to do, they were able to do. The lead cardiac surgeon told us that it could not have gone any better than it did. Namine is now being situated and settled in her room in the PICU (Pediatric Intensive Care Unit), where we will be able to see her in roughly an hour and a half.
Thank you, everyone, for your thoughts and prayers. Someone obviously had His hand in today's events.
If I were writing this on paper, you would see teardrops spattering my words. But it's okay now; this time, they're happy tears.
She's not out of the woods yet - she has at least two more heart surgeries to go, plus her jaw and legs/hips/feet surgeries - but today is a major victory.
I'm going to go now, to wait with bated breath for the nurse to tell me I can see my daughter again.
Monday, July 28, 2008
Here We Go Again
Well, tomorrow's the big day. Jess and I will be out of touch - online, at least - until after the surgery.
See you on the other side.
See you on the other side.
Sunday, July 27, 2008
Site Update
I've changed things around on the site a bit.
I added Namine's name in katakana at the top.
I removed the old photo slide show and put in the embedded one from Picasa. This new slide show allows the captions to be seen before clicking (and you can turn 'em off, if you want).
I removed Google's default "subscribe to feed" dropdowns because they weren't behaving properly, and manually put in my own. The first will add a Google Gadget feed to the site, and the second will take you straight to the site's RSS feed.
And I uploaded some more photos to the album.
Last, but not least, is a picture of Namine that I drew the other day. You can click on it to view the actual size. And no, that is not bubble wrap. It's pretty hard to draw a quilted blanket, in my opinion.
In-a-gadda-da-vida, honey,
Don't you know that I love you?
In-a-gadda-da-vida, baby,
Don't you know that I'll always be true?
I added Namine's name in katakana at the top.
I removed the old photo slide show and put in the embedded one from Picasa. This new slide show allows the captions to be seen before clicking (and you can turn 'em off, if you want).
I removed Google's default "subscribe to feed" dropdowns because they weren't behaving properly, and manually put in my own. The first will add a Google Gadget feed to the site, and the second will take you straight to the site's RSS feed.
And I uploaded some more photos to the album.
Last, but not least, is a picture of Namine that I drew the other day. You can click on it to view the actual size. And no, that is not bubble wrap. It's pretty hard to draw a quilted blanket, in my opinion.
In-a-gadda-da-vida, honey,
Don't you know that I love you?
In-a-gadda-da-vida, baby,
Don't you know that I'll always be true?
Surgery
Hello to Everyone,
I am writing to tell all of you that they did the scope today and they found that the fistula is healing and it is about half the size it was last Tuesday. So the heart procedure is still scheduled for Tuesday of this week. It has been a very long past couple of nights so this post is going to be short and we will write more later:)
Love to all and thanks to all and keep up the prayers.
Love,
Jessica, Paul and Namine
I am writing to tell all of you that they did the scope today and they found that the fistula is healing and it is about half the size it was last Tuesday. So the heart procedure is still scheduled for Tuesday of this week. It has been a very long past couple of nights so this post is going to be short and we will write more later:)
Love to all and thanks to all and keep up the prayers.
Love,
Jessica, Paul and Namine
Saturday, July 26, 2008
Surgery Moved to Tuesday
I wrote on Wednesday that Namine's heart surgery is rescheduled for this Monday; well, that changed today. The doctors moved it to Tuesday. So on Monday, they'll still do the fiber optic scope to look at her throat (and how it's healed). If she's healed to their satisfaction, they'll proceed with the heart surgery on Tuesday. If not, I suppose they'll put off the surgery until it is healed. No one has given us a clear answer in this regard quite yet.
Thursday, July 24, 2008
Videos Moved
I've moved all of Namine's videos to their very own channel (as opposed to grouping them by keyword in a larger channel). It may take a while for the changes to get updated on the blog, so you can check them out here in the meantime.
No Surgery Today: Addendum
We found out later today that the doctors do not believe Namine's throat is infected. I edited the previous post, but in case anyone is subscribing to the blog's feed, I wanted to make sure you received the update.
The other thing I want to mention before going to bed is that her heart rate has been pretty high for the past few days. The doctors hope she'll be able to wait until Monday for surgery.
Keep storming heaven's gates, guys.
The other thing I want to mention before going to bed is that her heart rate has been pretty high for the past few days. The doctors hope she'll be able to wait until Monday for surgery.
Keep storming heaven's gates, guys.
Wednesday, July 23, 2008
No Surgery Today
I have some good news and some bad news.
First, the bad news. Namine will no longer have heart surgery today. The doctors discovered a hole in her throat, caused by the high pressure from the air tube. It is NOT infected, and they are confident that she will heal quickly. Since she needs help getting air, they have intibated her (they have put the air tube all the way down into her airway, instead of just past the obstruction of her tongue). The doctors have rescheduled Namine's heart surgery for Monday morning, but of course this also depends on how quickly her throat heals.
And now, the good news. The doctors have examined Namine's trachea, and have found that it is fine. They were worried that it would be narrow or have some sort of deformity, but to the contrary, it is normal. So, the only obstruction to her breathing is her regressed jaw and tongue, which will be addressed by reconstructive surgery at a later point.
I've got some more pictures and a video of our bundle o' joy (and I mean this literally - last night she was a little burrito) to upload, but that will have to wait until I get home. Another couple of days, I think. We'll see if we can stay in a parent room at the NICU again.
Thank you for all your prayers and support.
First, the bad news. Namine will no longer have heart surgery today. The doctors discovered a hole in her throat, caused by the high pressure from the air tube. It is NOT infected, and they are confident that she will heal quickly. Since she needs help getting air, they have intibated her (they have put the air tube all the way down into her airway, instead of just past the obstruction of her tongue). The doctors have rescheduled Namine's heart surgery for Monday morning, but of course this also depends on how quickly her throat heals.
And now, the good news. The doctors have examined Namine's trachea, and have found that it is fine. They were worried that it would be narrow or have some sort of deformity, but to the contrary, it is normal. So, the only obstruction to her breathing is her regressed jaw and tongue, which will be addressed by reconstructive surgery at a later point.
I've got some more pictures and a video of our bundle o' joy (and I mean this literally - last night she was a little burrito) to upload, but that will have to wait until I get home. Another couple of days, I think. We'll see if we can stay in a parent room at the NICU again.
Thank you for all your prayers and support.
Tuesday, July 22, 2008
Quick Update, and a Video
Hello all. I've uploaded several videos to Youtube, and they should show up in the now-live video sidebar. I also want to draw your attention to one in particular, because Namine really opened her eyes for us last night.
I promised myself I wouldn't make any cooing noises at her, but you can see how well that turned out.
I promised myself I wouldn't make any cooing noises at her, but you can see how well that turned out.
Monday, July 21, 2008
Wide Awake
Hello to all of you! We have some news from the cardiac surgeons and when Namine's procedure will be. They are going to do the surgery on Wednesday the 23rd of July. They are going to reconstruct her arch and clamp off an artery. This is the first surgery of many to come. This is not the original Norwood operation that they had planned for, but this gives them more time to let her grow and gain weight. They would like her to be at least 6lbs before they do the Norwood because of the shunt that has to go into her artery. This is all in layman's terms. Paul can go into detail and let you know what they are exactly going to do.
The exciting news that Paul and I get to share with all of you is that she was awake tonight when we were there. The nurse took her out from under the "Billy Lights" and took off her sunglasses and she was wide awake. She was looking all over the place and making faces. She was trying to focus so hard on the tube coming out of her nose that she went cross-eyed, so it looked liked she was making faces at us. Her eyes which we new were dark and possibly black like Paul's are not black, one is dark blue and the other is almost greenish-blue. Paul is going to upload a video that we got of her with her eyes open. You can't tell the color of her eyes in the video, just that they are dark. So enjoy the new pictures and have a wonderful night.
Thank-you to everyone that is praying. Keep it up and God is listening.
Jessica
The exciting news that Paul and I get to share with all of you is that she was awake tonight when we were there. The nurse took her out from under the "Billy Lights" and took off her sunglasses and she was wide awake. She was looking all over the place and making faces. She was trying to focus so hard on the tube coming out of her nose that she went cross-eyed, so it looked liked she was making faces at us. Her eyes which we new were dark and possibly black like Paul's are not black, one is dark blue and the other is almost greenish-blue. Paul is going to upload a video that we got of her with her eyes open. You can't tell the color of her eyes in the video, just that they are dark. So enjoy the new pictures and have a wonderful night.
Thank-you to everyone that is praying. Keep it up and God is listening.
Jessica
Sunday, July 20, 2008
Our Newborn Baby Girl
We are now the proud parents of a newborn baby girl, Namine Olivia Eiche. She was born at 10:13 AM on Tuesday, July 15, 2008. She weighed in at 4 pounds, 10 ounces, and she was 13 inches long. She was delivered by C-section. Namine has been admitted to the NICU (Neonatal Intensive Care Unit) in Children's Hospital of Wisconsin for all her problems:
Namine's jaw is too small, and is too far back. As a result of this, her airway is blocked. For the time being, there is a tube in her nose, pushed down her throat to keep her airway propped open. There is oxygen being put down the tube, but she is breathing on her own. There will eventually be reconstructive surgery (called a jaw distraction) to pull her jaw forward. In addition to this, she has a cleft palate. Contrary to usual cleft palates, however, where the lip and gums are usually also split, her palate is open near the back of her mouth. The doctors say that when they distract Namine's jaw, they will also close her palate.
Her heart has double inlet left ventricle heart defect, which means that instead of having two chambers in her heart, she only has one - the left ventricle. (If a child has only one heart chamber, doctors prefer it be the left, which is stronger.) She has heart surgery planned for Tuesday, but we don't know exactly what will be done yet - that will be decided on Monday. They will also probably put the air tube all the way down her throat for this surgery.
She has caudal regression. Her sacrum is deformed, which in turn has affected her thighs. They are shorter than they should be, and they do not have the ball-in-socket joints to her hips that a normal baby would have. She also has clubbed feet. At this point in time, we're not sure what kind of surgery she'll undergo for all this. Her airway and heart take first priority.
I just want to say thanks for everyone's continued prayer and support. We can't articulate how much it means to us. Lastly, I'd like to mention that I've created an online photo album for Namine, the slide show for which is on the right sidebar. I'll also upload some videos when I get the chance.
Namine's jaw is too small, and is too far back. As a result of this, her airway is blocked. For the time being, there is a tube in her nose, pushed down her throat to keep her airway propped open. There is oxygen being put down the tube, but she is breathing on her own. There will eventually be reconstructive surgery (called a jaw distraction) to pull her jaw forward. In addition to this, she has a cleft palate. Contrary to usual cleft palates, however, where the lip and gums are usually also split, her palate is open near the back of her mouth. The doctors say that when they distract Namine's jaw, they will also close her palate.
Her heart has double inlet left ventricle heart defect, which means that instead of having two chambers in her heart, she only has one - the left ventricle. (If a child has only one heart chamber, doctors prefer it be the left, which is stronger.) She has heart surgery planned for Tuesday, but we don't know exactly what will be done yet - that will be decided on Monday. They will also probably put the air tube all the way down her throat for this surgery.
She has caudal regression. Her sacrum is deformed, which in turn has affected her thighs. They are shorter than they should be, and they do not have the ball-in-socket joints to her hips that a normal baby would have. She also has clubbed feet. At this point in time, we're not sure what kind of surgery she'll undergo for all this. Her airway and heart take first priority.
I just want to say thanks for everyone's continued prayer and support. We can't articulate how much it means to us. Lastly, I'd like to mention that I've created an online photo album for Namine, the slide show for which is on the right sidebar. I'll also upload some videos when I get the chance.
Monday, July 7, 2008
Baby Update
Dear Friends and Family,
I met with another doctor the reviews the ultrasounds and when he was scanning me I could see her little legs, or at least one of them. To me and this is my personal opinion it looks like just one of her legs is shortened. So keep praying because she keeps stretching:)
Also during the ultrasound I saw her mound of hair. She looked like she had a mohawk. It is the curliest I have ever seen a baby's hair. Also she has gained close to a pound in a week. Last week she weighed in at 4lbs 11oz. This week she weighed in at 5lbs 8oz. So that is a blessing, she will beefed up to go through the heart surgery. I and Paul and our families can not thank-you enough for all of your prayers and thoughts and concerns. We are blessed to have loved ones such as you. Keep the storms coming. We love you all:)
Love,
Jessica, Paul and Namine Eiche
P.S. The date that I will most likely have her is July 28. But I won't know for sure until July 20th when my OB returns from vacation. I will keep you all updated and If you know someone that I have missed please feel free to send this email to them.
I met with another doctor the reviews the ultrasounds and when he was scanning me I could see her little legs, or at least one of them. To me and this is my personal opinion it looks like just one of her legs is shortened. So keep praying because she keeps stretching:)
Also during the ultrasound I saw her mound of hair. She looked like she had a mohawk. It is the curliest I have ever seen a baby's hair. Also she has gained close to a pound in a week. Last week she weighed in at 4lbs 11oz. This week she weighed in at 5lbs 8oz. So that is a blessing, she will beefed up to go through the heart surgery. I and Paul and our families can not thank-you enough for all of your prayers and thoughts and concerns. We are blessed to have loved ones such as you. Keep the storms coming. We love you all:)
Love,
Jessica, Paul and Namine Eiche
P.S. The date that I will most likely have her is July 28. But I won't know for sure until July 20th when my OB returns from vacation. I will keep you all updated and If you know someone that I have missed please feel free to send this email to them.
Tuesday, July 1, 2008
Baby News
Hello to all,
It is June 30th and I have gone once again to have a Bio Physical Profile, and up until this point we (Paul and myself) believed that the baby had a mild form of caudal regression. Today we met with the first doctor that diagnosed the baby the first time and he was even more pessimistic this time around than before. The reason I say this is because the baby's body is growing nicely, all but her legs, so defects are little easier to see. What we were told today was that instead of having shortened legs, how can I describe this to make sense without hand motions, where her knee is supposed to be is her foot and the lower part of her leg is just not there, or if it is it is not developed at all and very very small. As far as the size of the baby she is now just over 4lbs and growing nicely for the heart surgery that she will have to endure within the first days of life outside the womb. As far as the caudal regression it is still in the air. No one can give any answers as how to fix the problem until they know for sure what exactly the problem is and how extensive it is. We range anywhere from amputation to have have shortened legs with prosthetics for movement. Being confined to a wheelchair or running with space age legs. We don't know anything until the day that she is born. The other information that we found out today is that instead of the baby being breech she is transverse which means sideways. So I will have to have a c-section, which will either be on the 28th of July or the 4th of August. The doctor doesn't want me to go into labor on my own because of her position. If my water breaks the chances of everything coming out but the baby are great and that is not good.
The good news that I have is that she has a ton of hair so she won't be a bowling ball like I was and that she is gaining weight nicely.
Paul and I ask that you keep all of us in your prayers and I will try to keep you all updated. Thank-you already for storming heaven, keep it up we need all the storms we can get.
God's Blessings,
Jessica, Paul and Namine Eiche
It is June 30th and I have gone once again to have a Bio Physical Profile, and up until this point we (Paul and myself) believed that the baby had a mild form of caudal regression. Today we met with the first doctor that diagnosed the baby the first time and he was even more pessimistic this time around than before. The reason I say this is because the baby's body is growing nicely, all but her legs, so defects are little easier to see. What we were told today was that instead of having shortened legs, how can I describe this to make sense without hand motions, where her knee is supposed to be is her foot and the lower part of her leg is just not there, or if it is it is not developed at all and very very small. As far as the size of the baby she is now just over 4lbs and growing nicely for the heart surgery that she will have to endure within the first days of life outside the womb. As far as the caudal regression it is still in the air. No one can give any answers as how to fix the problem until they know for sure what exactly the problem is and how extensive it is. We range anywhere from amputation to have have shortened legs with prosthetics for movement. Being confined to a wheelchair or running with space age legs. We don't know anything until the day that she is born. The other information that we found out today is that instead of the baby being breech she is transverse which means sideways. So I will have to have a c-section, which will either be on the 28th of July or the 4th of August. The doctor doesn't want me to go into labor on my own because of her position. If my water breaks the chances of everything coming out but the baby are great and that is not good.
The good news that I have is that she has a ton of hair so she won't be a bowling ball like I was and that she is gaining weight nicely.
Paul and I ask that you keep all of us in your prayers and I will try to keep you all updated. Thank-you already for storming heaven, keep it up we need all the storms we can get.
God's Blessings,
Jessica, Paul and Namine Eiche
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