I have created another blog to go forward from. To view it you go to www.jacea.blogspot.com Thank you for all your kind words the last few days.
Jennifer
Thursday, January 11, 2007
Friday, January 05, 2007
Some Last Pictures
We didn't get to post Emily's Christmas pictures because of everything that happened. The one with her in her red dress was taken while opening her presents. She is looking at a Little People Nativity set Dad's great aunt (who is a Sister of Mercy) got for her. She was very alert and looking at her presents.
The second one shows her looking cross-eyed at her CPAP. Mommy kept telling her 'Don't do that - you'll hurt your eyes!' Of course, our stubborn, curious little girl wouldn't listen.
Tony
Goodbye
Emily died today at Children's Hospital of Philadelphia.
She was only 5 months, 5 days old.
She was very strong, very brave, very smart, and everybody loved her.
Her Mommy and Daddy love her very, very much.
Tony
She was only 5 months, 5 days old.
She was very strong, very brave, very smart, and everybody loved her.
Her Mommy and Daddy love her very, very much.
Tony
A sad day
Jennifer called me this morning and sadly, Emily isn't doing well.
Jen asked me to post a note to tell everyone they think our sweet little girl may not be with us too much longer.
Emily is stating in the 70s. The Dr's say her PDA was opening again and she has something called Cor pulmonle, which from what I understand is a progressive cardio pulmonary disease. The prognosis is not good.
Please pray for Jennifer and Tony for strength in this the most unbearable time, and for our little Emily who is loved so much by all whom she has touched, our family, and friends around the world.
Grandma Diane
Jen asked me to post a note to tell everyone they think our sweet little girl may not be with us too much longer.
Emily is stating in the 70s. The Dr's say her PDA was opening again and she has something called Cor pulmonle, which from what I understand is a progressive cardio pulmonary disease. The prognosis is not good.
Please pray for Jennifer and Tony for strength in this the most unbearable time, and for our little Emily who is loved so much by all whom she has touched, our family, and friends around the world.
Grandma Diane
Thursday, January 04, 2007
Emily's big ride
Hello,
Well Emily is now at the Children's Hospital. She was moved to the conventional vent yesterday so they could do a EEG (to monitor her brain waves and check for seizure activity). She did well enough for it to get her transported to the other hospital, where she was put back on the oscillator.
It was hard to say goodbye to the place that had been our home for the last 6 months. There was a crowd of people partially lining our exit out. Many of her nurses want to see her in her new "home" for now and so Emily will see some familiar faces (other then ours) from time to time. Also the doctor who was on service during those critical first few weeks of life is going to be on service at this hospital soon. We can tell he really wants to take care of Emily in her new home as well, though he doesn't know if he will be able to.
Emily is doing well at her new home. They will not let her desat even a little bit. When we were finally able to see her her sats were in the very high 90's to 100%. They have IV's in everywhere and I have said numerous times that she looks worse now then she did when she was first born. To the best of my memory, she has one in each foot, each hand and one in her head. One of the ones in her arm is an arterial line that they can draw blood from. Her color looks good but she is noticeably puffy. This is mostly do to the muscle relaxant that she is on that is paralyzing her. They did an EEG on her for 12 hours last night. It will be interesting to see how she did. We do know that at the first hospital the EEG that she had yesterday showed a 2.5 minute seizure. It is still unclear what is causing these seizures though.
This new hospital has some nice features. First of all the parking is 1/2 what is was! We paid $8 a day at the old hospital (that is after the first 2 months when we found out there was reduced parking, it was $15 for the first 2 months), here we pay only $3. There are lots of interesting places to choose from to eat if we eat out. Some of which even offer discounts to parents. When Emily gets off some of this equipment that she is on I can even sleep next to her bed sometimes!Emily does have a window, and her spot doesn't appear to be as cold as the last spot. We still hear stories about other parents who have children that were barely preemies but now we don't hopefully have to see them all the time. We did hear how some parents hated the hospital that Emily came from and complained about this or that. Most of which I know from all the discharges that I heard (through the 5 months) were false. One last thing that we like is she now is known officially as Emily and not Baby girl B.
We expect Emily to get a spinal tap today (or tomorrow) and an MRI when she is back on the other vent.
That is about all the news I have for now. Thank you for your continued prayers!
Jennifer
Well Emily is now at the Children's Hospital. She was moved to the conventional vent yesterday so they could do a EEG (to monitor her brain waves and check for seizure activity). She did well enough for it to get her transported to the other hospital, where she was put back on the oscillator.
It was hard to say goodbye to the place that had been our home for the last 6 months. There was a crowd of people partially lining our exit out. Many of her nurses want to see her in her new "home" for now and so Emily will see some familiar faces (other then ours) from time to time. Also the doctor who was on service during those critical first few weeks of life is going to be on service at this hospital soon. We can tell he really wants to take care of Emily in her new home as well, though he doesn't know if he will be able to.
Emily is doing well at her new home. They will not let her desat even a little bit. When we were finally able to see her her sats were in the very high 90's to 100%. They have IV's in everywhere and I have said numerous times that she looks worse now then she did when she was first born. To the best of my memory, she has one in each foot, each hand and one in her head. One of the ones in her arm is an arterial line that they can draw blood from. Her color looks good but she is noticeably puffy. This is mostly do to the muscle relaxant that she is on that is paralyzing her. They did an EEG on her for 12 hours last night. It will be interesting to see how she did. We do know that at the first hospital the EEG that she had yesterday showed a 2.5 minute seizure. It is still unclear what is causing these seizures though.
This new hospital has some nice features. First of all the parking is 1/2 what is was! We paid $8 a day at the old hospital (that is after the first 2 months when we found out there was reduced parking, it was $15 for the first 2 months), here we pay only $3. There are lots of interesting places to choose from to eat if we eat out. Some of which even offer discounts to parents. When Emily gets off some of this equipment that she is on I can even sleep next to her bed sometimes!Emily does have a window, and her spot doesn't appear to be as cold as the last spot. We still hear stories about other parents who have children that were barely preemies but now we don't hopefully have to see them all the time. We did hear how some parents hated the hospital that Emily came from and complained about this or that. Most of which I know from all the discharges that I heard (through the 5 months) were false. One last thing that we like is she now is known officially as Emily and not Baby girl B.
We expect Emily to get a spinal tap today (or tomorrow) and an MRI when she is back on the other vent.
That is about all the news I have for now. Thank you for your continued prayers!
Jennifer
Wednesday, January 03, 2007
Emily's Very Bad Day
Edited to add:
Emily was put on the vent about noon on Sunday. She had been desating into the low 80's and we feared that it could be damaging her more. Initally they just had her on the conventional vent with her "NO" gas or Nitric Oxcide. We thought that this would stablize her and we could get her transfered to the Childrens hospital on Tuesday when all the doctors were back from the holiday. She did well with it for a while. - Jennifer
I'm sorry for not posting sooner, but we spent the night at the hospital yesterday. We found out early on New Year's Day that Emily's condition had worsened and we came right in. She was back on the oscillator and had been given medication to paralyze her so that she won't interfere with the machine. Her oxygen saturations were in the 60 % range for a while and they thought that she wasn't going to make it. Her nightime primary stayed for a couple of hours, and one of the nurses called her other two primaries to tell them, who came in on their day off to see Emily. She got a little better, but her saturations took hours to slowly creep up into the 80 % range. One of Emily's nurses also noticed that she started having siezures, so they scheduled an EEG, which was taken yesterday. They initially tried to move her back to the ventilator on Tuesday to try to a) get an EEG b) move her to Children's Hospital, and c) get and MRI and/or a CAT scan. This proved to be disasterous as her saturations dropped into the 50's and took several hours to get back into the 80's. They were able to do the EEG despite the interferance from the oscillator and the neurologist was able to see that Emily is indeed having siezures, but without and MRI or CAT scan and an assessment (which can't be done on the medication), she can't tell us how bad they are. The good news was that she can see that Emily does have normal brain function. She's been slowly improving but is very sensitive - last night her saturations finally made it back into the 90 % range, but the doctors have to be very careful in planning what tests they want done because she desats very easily and takes hours to recover. For now, she's been getting one-on-one nursing because she's so high maintenance.
It must be very scary for our little girl. Although the meds have her paralyzed (on purpose - she never liked the oscillator!), she is still concious of what's going on around her. We stay by her bedside talking to her and touching her so that she knows Mommy and Daddy are nearby. She also cries sometimes, mainly when she gets her nose suctioned. None of the doctors know what happened to her, but they suspect an infection and are treating her for meningitis. The only way to be sure would be to do a spinal tap, which Emily wouldn't tolerate now. The viral panels have all come back negative so far. She also had an echo done on Monday and the cardiologist said that whatever is happening has put a lot of strain on her heart. Her pulmonary hypertension had been improving but is now worse than it was last month when he saw her for the first time. He said he would like to do more for her, but it would involve inserting a catheter but the blood pressure in Emily's lungs is so high right now he's concerned that she would not survive even minimally invasive proceedures.
Everyone please keep praying for Little Miss Emily. She's been through so much and we thought that we were finally past the worst of it, but this just doesn't seem to end and things seem to keep getting worse and worse.
Tony
Emily was put on the vent about noon on Sunday. She had been desating into the low 80's and we feared that it could be damaging her more. Initally they just had her on the conventional vent with her "NO" gas or Nitric Oxcide. We thought that this would stablize her and we could get her transfered to the Childrens hospital on Tuesday when all the doctors were back from the holiday. She did well with it for a while. - Jennifer
I'm sorry for not posting sooner, but we spent the night at the hospital yesterday. We found out early on New Year's Day that Emily's condition had worsened and we came right in. She was back on the oscillator and had been given medication to paralyze her so that she won't interfere with the machine. Her oxygen saturations were in the 60 % range for a while and they thought that she wasn't going to make it. Her nightime primary stayed for a couple of hours, and one of the nurses called her other two primaries to tell them, who came in on their day off to see Emily. She got a little better, but her saturations took hours to slowly creep up into the 80 % range. One of Emily's nurses also noticed that she started having siezures, so they scheduled an EEG, which was taken yesterday. They initially tried to move her back to the ventilator on Tuesday to try to a) get an EEG b) move her to Children's Hospital, and c) get and MRI and/or a CAT scan. This proved to be disasterous as her saturations dropped into the 50's and took several hours to get back into the 80's. They were able to do the EEG despite the interferance from the oscillator and the neurologist was able to see that Emily is indeed having siezures, but without and MRI or CAT scan and an assessment (which can't be done on the medication), she can't tell us how bad they are. The good news was that she can see that Emily does have normal brain function. She's been slowly improving but is very sensitive - last night her saturations finally made it back into the 90 % range, but the doctors have to be very careful in planning what tests they want done because she desats very easily and takes hours to recover. For now, she's been getting one-on-one nursing because she's so high maintenance.
It must be very scary for our little girl. Although the meds have her paralyzed (on purpose - she never liked the oscillator!), she is still concious of what's going on around her. We stay by her bedside talking to her and touching her so that she knows Mommy and Daddy are nearby. She also cries sometimes, mainly when she gets her nose suctioned. None of the doctors know what happened to her, but they suspect an infection and are treating her for meningitis. The only way to be sure would be to do a spinal tap, which Emily wouldn't tolerate now. The viral panels have all come back negative so far. She also had an echo done on Monday and the cardiologist said that whatever is happening has put a lot of strain on her heart. Her pulmonary hypertension had been improving but is now worse than it was last month when he saw her for the first time. He said he would like to do more for her, but it would involve inserting a catheter but the blood pressure in Emily's lungs is so high right now he's concerned that she would not survive even minimally invasive proceedures.
Everyone please keep praying for Little Miss Emily. She's been through so much and we thought that we were finally past the worst of it, but this just doesn't seem to end and things seem to keep getting worse and worse.
Tony
Sunday, December 31, 2006
Pain is all Emily sees
Hello,
Well Emily got transferred to the Si-Pap machine that they were waiting to get in. She hasn't done that well on it though. She figured out rather quickly how to turn the machine off by holding her breath and is often doing that. Therefore defeating the purpose of the machine. Her stats on the machine are not that great also so they are often switching her back and forth between the C-pap and the SiPap.
We think that Emily has a Kidney stone. She is prone to them because of the diarill that she is on to make it so she can live (fluid build up in her lungs is common with her condition). She was screaming uncontrollably for most of the afternoon evening yesterday. They were trying to keep her sedated last night but from what I hear her stats started drifting down and would hang there for long periods of time. While short times of this are not bad (they are not good either) hanging there is really bad!
They are running a series of tests on her today (unfortunately no ultrasounds because of the holiday, this would tell if she has kidney stones) and hopefully we will have some answers soon. We are going to the hospital early today to be with her.
This is about all the news we have for now. Sorry for no pictures but who wants to look at a baby in pain?
Jennifer
Well Emily got transferred to the Si-Pap machine that they were waiting to get in. She hasn't done that well on it though. She figured out rather quickly how to turn the machine off by holding her breath and is often doing that. Therefore defeating the purpose of the machine. Her stats on the machine are not that great also so they are often switching her back and forth between the C-pap and the SiPap.
We think that Emily has a Kidney stone. She is prone to them because of the diarill that she is on to make it so she can live (fluid build up in her lungs is common with her condition). She was screaming uncontrollably for most of the afternoon evening yesterday. They were trying to keep her sedated last night but from what I hear her stats started drifting down and would hang there for long periods of time. While short times of this are not bad (they are not good either) hanging there is really bad!
They are running a series of tests on her today (unfortunately no ultrasounds because of the holiday, this would tell if she has kidney stones) and hopefully we will have some answers soon. We are going to the hospital early today to be with her.
This is about all the news we have for now. Sorry for no pictures but who wants to look at a baby in pain?
Jennifer
Friday, December 29, 2006
Go Emily Go!
Hello,
Sorry for no pictures. We did take video of her yesterday but that was it. I forgot to mention that Emily rolled over 2-3 times front to back on Wednesday. She clearly knows what she wants and is not going to wait for people to do it for her! Also Emily scooted across her crib yesterday. She was on her belly and made it about 5 inches. This was even in the P.J.'s that are a bit big for her and made it so her legs were well within the body of the outfit. She was funny doing it too. She would complain and kind of commando crawl then get tired sleep for a minute or two and then do it again. Very funny!
I realize that I should explain the photo of Emily in jail. I was talking to my father the other day and he was walking to work. He told me that he has pictures of Emily on his person. I asked him if he had made a button of Emily like he made of my sister before they brought her over from China. He said he hadn't. I said he should and I would take a picture of her "behind bars" so he put "Free Emily" on the button. Therefore the picture. I am going to try to see if I can get a better one of her "behind bars," but she has to be doing a bit well for that since she needs to cooperate with me.
The only other new thing is Emily is now on 27 calories per oz. This is equivalent to Emily drinking Ensure everyday. She is actually getting the same calories.
That is all that I have for now!
Jennifer
Sorry for no pictures. We did take video of her yesterday but that was it. I forgot to mention that Emily rolled over 2-3 times front to back on Wednesday. She clearly knows what she wants and is not going to wait for people to do it for her! Also Emily scooted across her crib yesterday. She was on her belly and made it about 5 inches. This was even in the P.J.'s that are a bit big for her and made it so her legs were well within the body of the outfit. She was funny doing it too. She would complain and kind of commando crawl then get tired sleep for a minute or two and then do it again. Very funny!
I realize that I should explain the photo of Emily in jail. I was talking to my father the other day and he was walking to work. He told me that he has pictures of Emily on his person. I asked him if he had made a button of Emily like he made of my sister before they brought her over from China. He said he hadn't. I said he should and I would take a picture of her "behind bars" so he put "Free Emily" on the button. Therefore the picture. I am going to try to see if I can get a better one of her "behind bars," but she has to be doing a bit well for that since she needs to cooperate with me.
The only other new thing is Emily is now on 27 calories per oz. This is equivalent to Emily drinking Ensure everyday. She is actually getting the same calories.
That is all that I have for now!
Jennifer
Thursday, December 28, 2006
Emily and her Christmas
"Free Emily!!"
Hello,
Sorry we haven't been able to post till now. The Internet was down for 2 days at the time that I normally post. Then when it finally got back up I had a backlog of things to do and so posting got pushed back.
Emily has been doing okay on the c-pap. She has been at 100% (though the machine says 94%) for about 3 days now. Yesterday they even increased her c-pap to 8. She has occasional desats that I think are more or less mechanical then anything else. Normally they don't go below the high 80's. She was able to eat from a bottle/breast and was put on the high flow cannula to do so. However the last few days it has been clear that she needed the C-pap so I haven't even asked if I could do it.
We put her in her Christmas dress on Christmas and she promptly decided to throw up on it within 30 minutes of getting in it. So unfortunately we were unable to get a family picture. We are planning on trying again but I don't know when that will be.
She had some hum dinger of poo's recently. Grandpa Billings you smell like roses compared to her. She actually makes your eyes water and one nurse said she felt like she was going to throw up just testing it (they test the poo for blood). In other words, when she stinks, run for the hills!!
What else can I say about her... Well the doctor talked to me yesterday and said that he is going to try one more c-pap machine that they are trying to bring into the hospital. This c-pap can give inspitory pressure (or pressure when she breaths in, I still don't quite understand how it is different then C-pap but it is) which they tried to do on one of the other c-pap machines that they currently have and couldn't get it to work. He says that if this doesn't work then we should plan on going to the children's hospital by mid January for the trache. We are nervous, scared, and I think I am a bit excited for that day. Excited because then we will have a set plan and road to head down and hopefully this would lead to her going home sooner rather then later. Also I want her to be able to take from the bottle and we can't really do that now. I know that no procedure is not with out it's risks but I hope that Emily will be able to come out of this relatively well.
That is about all the news I have for now. Talk to you all later!
Jennifer
Sorry we haven't been able to post till now. The Internet was down for 2 days at the time that I normally post. Then when it finally got back up I had a backlog of things to do and so posting got pushed back.
Emily has been doing okay on the c-pap. She has been at 100% (though the machine says 94%) for about 3 days now. Yesterday they even increased her c-pap to 8. She has occasional desats that I think are more or less mechanical then anything else. Normally they don't go below the high 80's. She was able to eat from a bottle/breast and was put on the high flow cannula to do so. However the last few days it has been clear that she needed the C-pap so I haven't even asked if I could do it.
We put her in her Christmas dress on Christmas and she promptly decided to throw up on it within 30 minutes of getting in it. So unfortunately we were unable to get a family picture. We are planning on trying again but I don't know when that will be.
She had some hum dinger of poo's recently. Grandpa Billings you smell like roses compared to her. She actually makes your eyes water and one nurse said she felt like she was going to throw up just testing it (they test the poo for blood). In other words, when she stinks, run for the hills!!
What else can I say about her... Well the doctor talked to me yesterday and said that he is going to try one more c-pap machine that they are trying to bring into the hospital. This c-pap can give inspitory pressure (or pressure when she breaths in, I still don't quite understand how it is different then C-pap but it is) which they tried to do on one of the other c-pap machines that they currently have and couldn't get it to work. He says that if this doesn't work then we should plan on going to the children's hospital by mid January for the trache. We are nervous, scared, and I think I am a bit excited for that day. Excited because then we will have a set plan and road to head down and hopefully this would lead to her going home sooner rather then later. Also I want her to be able to take from the bottle and we can't really do that now. I know that no procedure is not with out it's risks but I hope that Emily will be able to come out of this relatively well.
That is about all the news I have for now. Talk to you all later!
Jennifer
Subscribe to:
Posts (Atom)