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
Sunday, December 24, 2006
Emily becomes an Elephant
Emily was put to the C-pap on Friday. The doctor says that this is one final effort to having her not be trached. I believe that Emily is close to not needing to be trached. She does many things that normally put a baby down that route, including breathing on her own and being of the vent for 2 + months now. She clearly can do what she needs to do, but she can't keep the pressure in her lungs to help her breath. Which is a small but vital thing to do.
So on Friday they tried her on one machine (it was actually the last vent that she was on) to give her pressure support via C-pap. They were not able to give her the pressure support (limitations of the machine not Emily) that they thought they could give her and since she had about 2 inches hanging from her nose they put her on the conventional C-pap machine. She seems to be doing well on it. Her oxygen has been able to be weaned, albeit slowly. Yesterday it was around 95% and she was statting in the upper 90's, though they did have her as low as 85% at one point. I don't know what they were able to do overnight.
One thing we are not happy about is she has stopped taking the bottle. I talked to the doctor prior to her starting the C-pap and he told me that he didn't want to stop her feedings (by bottle) for that long. He was thinking that she could go back on the high flow cannula for feedings and then go back on the C-pap machine, that is if she couldn't handle them well on the C-pap. (It is hard to eat on C-pap.) This was my understanding all the way until yesterday's 4 pm feeding when the doctor said that the doctor on service said that she can't take any bottles till Monday at the earliest. To say this makes us mad is an understatement. We know that she needs to be bottle fed. She is 45 weeks gestation tomorrow. They keep telling us that she may loose her sucking reflex if we don't feed her yet they think it is okay to leave her like this (mad and all since she like eating from a bottle) for 3 days! Tony and I have our own opinions about the doctor who was covering for yesterday and we are trying to keep them to ourselves. Last time this happened though it took her 3 weeks to recover to where she was before they stopped letting her take the bottle. I guess we have g-tubes in our future (a tube to put food directly into her stomach).
Emily is tolerating the c-pap as well as she can. She doesn't like it but she does okay with it. We have noticed that she is awake a lot now and then crashes and "power naps."
That is about all for now.
Have a Merry Christmas!
Jennifer
Thursday, December 21, 2006
A Rough Day
We got some bad news about Emily yesterday. The flow rate on her cannula was increased to 6 liters / minute, and they haven't been able to wean her off of 100 % oxygen. The doctors have said that if she gets to the point where she would require a CPAP, they are going to send her to CHOP (the children's hospital) and have a trache put in and put her on a ventilator. If this doesn't happen, the best we can hope for is that she stays in the intensive care nursery at Pennsylvania Hospital for many more months until they can wean her flow rate down to 1 liter/minute or less. In any event, she will likely be on oxygen for several years after she is released.
Tony
Tuesday, December 19, 2006
Emily's Weekend
Hello!
Sorry it has been a while since we posted. Emily is doing well. She had a really good day on Saturday and was awake for most of the time that we were there. On Sunday she had a bad day though and was desating a lot. She looked pale to me and they ran a blood test and she was anemic. So she got blood and a diarill. She looked better afterwords (yesterday) but she is still desating. Not bad (into the high 80's low 90's) but still desating. She stopped her inhaled steroid, because we didn't think it was doing anything for her and now we are all wondering if it really was doing something for her.
The occupational therapist saw her on Saturday and was shocked by her. She started showing off all of her tricks. She said that Emily is developmentally around 2 months of age. That was good news to hear!!
I started the ball rolling (or maybe I gave it a good hard push) on getting a high flow cannula at home for her. There used to be a one type but the FDA recalled it. Now Emily is on a second type but it is new and not very many home care companies have it or can deal with the high flow systems. The respiratory people were looking into it with no avail so I e-mailed the company directly (that makes the heater for the cannula) and told respiratory I did so. I guess now the rep for the company that they are leasing this system from (just for Emily) was there yesterday and she is looking into it for us. I just don't want to be in a situation where she is ready to go home except she is on a high flow rate that we can't accommodate, because we haven't done the research. I guess it pays to be the squeaky wheel sometimes!
That is about all that is going on now. Emily is going to be supplemented with Formula soon (maybe even today) but I am now not worried about my milk supply. I know that pumps are only marginally effective and Emily can draw more from me then a pump can. I think I am just going to do my best and hopefully when she comes home then Emily can get what she needs from me. I may have to rent a scale though just to be sure though.
Talk to you all later!
Jennifer
Sorry it has been a while since we posted. Emily is doing well. She had a really good day on Saturday and was awake for most of the time that we were there. On Sunday she had a bad day though and was desating a lot. She looked pale to me and they ran a blood test and she was anemic. So she got blood and a diarill. She looked better afterwords (yesterday) but she is still desating. Not bad (into the high 80's low 90's) but still desating. She stopped her inhaled steroid, because we didn't think it was doing anything for her and now we are all wondering if it really was doing something for her.
The occupational therapist saw her on Saturday and was shocked by her. She started showing off all of her tricks. She said that Emily is developmentally around 2 months of age. That was good news to hear!!
I started the ball rolling (or maybe I gave it a good hard push) on getting a high flow cannula at home for her. There used to be a one type but the FDA recalled it. Now Emily is on a second type but it is new and not very many home care companies have it or can deal with the high flow systems. The respiratory people were looking into it with no avail so I e-mailed the company directly (that makes the heater for the cannula) and told respiratory I did so. I guess now the rep for the company that they are leasing this system from (just for Emily) was there yesterday and she is looking into it for us. I just don't want to be in a situation where she is ready to go home except she is on a high flow rate that we can't accommodate, because we haven't done the research. I guess it pays to be the squeaky wheel sometimes!
That is about all that is going on now. Emily is going to be supplemented with Formula soon (maybe even today) but I am now not worried about my milk supply. I know that pumps are only marginally effective and Emily can draw more from me then a pump can. I think I am just going to do my best and hopefully when she comes home then Emily can get what she needs from me. I may have to rent a scale though just to be sure though.
Talk to you all later!
Jennifer
Friday, December 15, 2006
Blue Jean baby's milk
Emily has had some good days recently. She had her milk scan on Wednesday which I was there for. I was actually able to be there for the whole test. The test was simple enough, lay Emily on an imaging table and feed her a bottle with radioactive (slightly) material in it with her milk. Then feed her the rest of her bottle. Then lay her flat on this imaging table and leave her there for 1 hour. We, the nurse and I, were able to watch her radioactive milk go into her belly via monitor and then watch the whole time she was on the table. It started to go in to her intestine while we were there. The whole point of this test was to see if she had any acid reflux and to see if this went into her lungs. In my opinion, she has no reflux at no time did we see it go back into her lungs, or even come back up for that matter. The downside to this test is she was radioactive for 24 hours after the test and so they had to take extra precautions with her. Keep her diapers in a different spot and not wash her bottle for 24 hours and such.
I am pleased to say though that she is not radioactive anymore. In fact I can say with some certainty that she doesn't even have it in her system anymore. This is because she had not one but 2 blow out diapers yesterday and this is with the size 1 diapers and not the newborn diapers!! The first one happened around 3 pm yesterday and it was EVERYWHERE! I decided to give her a bath right then and there. Then I put her in her swing and scrubbed her whole crib, and the counter behind her crib (not that it got all over all of that but that area did need a good cleaning!!).
Oh one more thing about the Milk Scan. She is on a high flow cannula which is giving her a flow rate of 4 liters per minute and it is well humidified. In order to be transported down to where the test was going to be performed she needed to get on a regular cannula. This means no humidity and no 4 liter flow. So she was on 2 liter flow during that time (about 2 hours). They had her hooked up to a portable pulse ox machine (to measure her oxygen in her blood) and most of the time she was sating 98 and above. It was really nice to see with her.
Emily also has been taking her bottle well. Last night she took her whole bottle at 8pm, 12am, and 4am. The night before she took the whole thing at 12am and 4pm. It will be interesting to see if this pattern continues. I did ask if she could be on a trial "ad lib" or eat when she wants, and the doctors are not ready for her to do that yet.
Many of you have wrote to me about Domperidone and the wonderful results you have received from it in regard to milk production. I have looked into it, and even went to a compounding pharmacy who said that they don't carry it anymore. So after a bit of research I found out why the FDA doesn't allow it in this country anymore. Here is the link http://www.fda.gov/bbs/topics/ANSWERS/2004/ANS01292.html Emily already has heart problems so I will not be using this drug even if it were allowed in the country. I just wanted to share with you in case you are using it what effects it may have on your child.
Talk to you all later!
Jennifer
Tuesday, December 12, 2006
Emily and the bunny with a heart
As you can see Emily had a new outfit on last night. This one her paternal grandmother got her. Isn't she too cute! The one with me holding her is taken right after she fed off of me. I don't know why but her eyes just bugged out after that.
Emily had a good day yesterday. She took some partial feeding from the bottle and some partial feedings from me! She did well on both counts. She also had her echocardogram yesterday. The doctor just was getting ready to do it when I came into the ICN. He wanted Emily to calm down before he started though so I picked her up. She calmed right down then. So the doctor did the Echo with me holding Emily. She did really well. The medicine that he recommended giving her really has helped her a ton! Her heart is so much better he said. He recommended no more changes in her medication and said that he would see her again during the week after Christmas. I must say that while watching the ultrasound of Emily's heart I could help but see the similarities with the Rolling Stones tongue that they often use for their tours. Perhaps it was the angle of the ultrasound picture.
In other news while we were waiting in the family center during the shift change (we are not allowed to be at Emily's bedside during shift change which is an hour every 12 hours) we inadvertently heard a poor woman getting beat up by her boyfriend/husband. This guy actually beat her in the family center. We were the only ones in the family center other then this "couple". The police were called and we are assured that he will not be allowed to go back in the ICN again. They have a baby in the same nursery (there are 4 nurseries in the hospital) as Emily and we are worried for Emily's safety if he were allowed back in again.
Thank you for everyone who offered suggestions on how to boast my milk supply. One thing I am realizing is that I am lucky that Emily will suck and suck and suck on me. Last night I nursed for 40 minutes with her. She would have done it for longer but I had to stop her for fear that she would wear herself out. Anyway when I got home about 1.5 hours after her nursing I pumped and got about double what I normally get. I have one of the ICN doctors looking into all the herbs in the http://www.traditionalmedicinals.com/?id=30&pid=79 mother's milk tea to make sure nothing will harm Emily.
Thank you for all of your help. I will try some if not all of them and let you know how it goes.
Jennifer
Monday, December 11, 2006
Don't we all wish we could lose our water weight?
Hello,
Emily had a good weekend. She handled both the bottle and breastfeeding well. However on Saturday night we noticed that she gained about 3 oz overnight! This is not normal. Also her output had went down. Needless to say she had fluid build up on her lungs and this made her oxygen requirements go up. So yesterday they gave her a boast of a diarill. This really helped! She got rid of over 100 grams (or ml) of weight the very next diaper. Tony says this would be the equivalent of him peeing 10 lbs! Now she is doing much better I am told.
Other then that you can see she played dress up for us on Friday night. This clothing is size 0-3 months on her. You can see it is a bit big but she will be there soon. Tonight I am planning on having her play dress up again after her bath. She normally tolerates it well.
By the way, we looked up her heart diagnosis (or what we thought was her diagnosis) and it scared the living daylights out of me. We went to the doctor yesterday and he told us there is still a ton of stuff they can do for her so we shouldn't worry. Also the cardiologist isn't calling it what we thought it was, he is calling it pulmonary hypertension and not cor pulmonale which is what we thought it was called. Has anyone had experience with the later? There isn't much out there for cor pulmonale and what is out there scared me.
She still needs to be treated extremely well though. We have talked to people who talked to the doctor (head of the ICN) who is going to talk to the nursing staff about making sure whoever is in charge of her (nursing wise) has a light load so that she will not be allowed to cry. While I know that every parent doesn't want to see their child cry, Emily has a medical reason for this. Which I must admit for a parent that doesn't like to cause trouble if I don't have to (the nurses in the Antipardom unit when I was pregnant knew to leave me alone!) this is hard but a vital step for the care of our child. We are still hoping to keep her in this hospital though if at all possible. The count is really low now and provided it doesn't go up high we should be alright. She may also be moved to the transition nursery if the count goes up since there are normally more people to take care of her in there.
I have given my all to nursing her. I believe I am still producing less then she is consuming and the Reglan that I was prescribed is not good for me. It causes too many side effects to the point that yesterday we had to leave the hospital early because I wasn't feeling well. I am still going to continue to pump and try oatmeal and "mothers milk" tea. But I think that the day of supplementing with formula is close at hand. Which for me is a big bitter pill to swallow. If anyone has any suggestions on this or what else I may try please let me know. I still hope to nurse her when I am at the hospital for her feeds but that will only be for 20 minutes at the most (total), hopefully 3 times a day.
Happy Holidays!
Jennifer
P.S. Those of you who were on the Lefse Leaflet please post to it I have been really out of the loop lately but I can easily read that blog. Let me know if you need to get access to it again. Thank you!
Friday, December 08, 2006
Emily's New Dress
Hello,
Well Emily is able to eat from a bottle or breast. She is completely in control of the situation because of her heart. However there are a few ground rules. She can only have breast or bottle and if she chooses breast she can only be there for 20 minutes tops. As you can see this can cause all sorts of problems. She prefers to go to breast but when she doesn't get all of her feed she wants the bottle. So they have resorted to giving her a pacifier dipped in a sugar solution to try to calm her down. It works... sort of.
Other then that Emily is doing well. To look at her you wouldn't think that she is as sick as she is. She sleeps a lot but all babies do that. She is normally only awake when it is time to eat. She also knows which people she can demand attention from and which ones she can't. I have noticed that around shift change she demands attention from me even though I have been there all day and she hasn't wanted that much! Silly Emily!
I am told by talking to different people that people are not looking at the sidebar on this site. I have included various things and links on it recently. Including Emily's registry, an appendix to this blog with more detailed information of stuff on this blog, a way you can get prints of our pictures and see more pictures then we have on this blog (if you want earlier photos let me know), and just today I posted my friend Sonia's blog. Those who don't know Sonia and I met about a year ago when we were both battling infertility. She got pregnant with twins last November and ended up having many of the same problems in her pregnancy as I did in mine. She delivered at 23 weeks on April 4, 2006. She sadly lost her daughter but her son Isaac is doing very well. He came home after a 6 month hospital stay. Having known her has made me feel like I am not the only one that has went through all of this and I believe has made me even more thankful to the time I have with Emily.
Well Emily is able to eat from a bottle or breast. She is completely in control of the situation because of her heart. However there are a few ground rules. She can only have breast or bottle and if she chooses breast she can only be there for 20 minutes tops. As you can see this can cause all sorts of problems. She prefers to go to breast but when she doesn't get all of her feed she wants the bottle. So they have resorted to giving her a pacifier dipped in a sugar solution to try to calm her down. It works... sort of.
Other then that Emily is doing well. To look at her you wouldn't think that she is as sick as she is. She sleeps a lot but all babies do that. She is normally only awake when it is time to eat. She also knows which people she can demand attention from and which ones she can't. I have noticed that around shift change she demands attention from me even though I have been there all day and she hasn't wanted that much! Silly Emily!
I am told by talking to different people that people are not looking at the sidebar on this site. I have included various things and links on it recently. Including Emily's registry, an appendix to this blog with more detailed information of stuff on this blog, a way you can get prints of our pictures and see more pictures then we have on this blog (if you want earlier photos let me know), and just today I posted my friend Sonia's blog. Those who don't know Sonia and I met about a year ago when we were both battling infertility. She got pregnant with twins last November and ended up having many of the same problems in her pregnancy as I did in mine. She delivered at 23 weeks on April 4, 2006. She sadly lost her daughter but her son Isaac is doing very well. He came home after a 6 month hospital stay. Having known her has made me feel like I am not the only one that has went through all of this and I believe has made me even more thankful to the time I have with Emily.
Emily got to see Santa today so we put her in her holiday dress. The pictures of her with Santa are on a different camera but here she is in her dress. She is sooo cute!
Jennifer
Wednesday, December 06, 2006
My pretty little girl
The bumper in the previous shots I made in college as an assignment. She seems to really like that it is up.
Hello,
Well Emily had a good day yesterday. They were able to wean her oxygen down to about 60% and she was doing well at her feeds taking at least some of the bottle if not all of it.
However after her noon feeding the cardiologist came by and talked to me. I guess Emily's Echocardogram showed that her heart is enlarged on the right side, the side that pumps to the lungs. This is because her lungs are stiff and it is harder to pump blood through that side. They have many treatments for this we are told. The first one they are trying is a blood vessel dilator. This is a oral medication. They actually have to grind it down and put it in a suspension just for her as it is typically given to adults and not children and therefore it is only available in a pill. This condition will not go away tomorrow or even next month. This condition will last as long as her lungs are in the state they are in. So 2 years seems to be the consensus from all that we have heard. That is not to say that she will be in the hospital for 2 years though. The doctors all believe that we have months not years though until we can finally take her home.
In the meanwhile Emily has to treated very well. Whatever she wants she gets. If she is stressed at all it puts added pressure on her lungs and therefore her heart. Also they have stopped feeding her by bottle till they get recommendations from the children's hospital on how to feed her. I hope it is soon since Emily really likes eating for herself! This is because any choke that she may have can cause extreme damage to her. Same is true if she were to become ill. Emily has very little to no "reserve" to breathe with and so she needs to be well at all times. Most babies don't get the RSV shot in the hospital (hospital is suppose to be a controlled environment) but Emily will because she is that ill.
The doctors seem happy that they finally have a diagnosis for her. Before they were trying anything to help her not having the ability to do things scientifically. Now that she has this diagnosis they can treat her more effectively.
While this is a hard pill to take, we believe that Emily will continue to fight as she has her whole life. She is truly a miracle. All of the doctors say that.
Yesterday I thought I would try to let daddy have more of a role in her so I let her change her diaper (a good start I thought). Well Emily got daddy. Just as he lifted her legs she went all over getting daddy in the process. Amazingly she got the only section of her bumper that is covered in plastic! Good aim Emily!! Needless to say he will not be changing any more of her diapers for a while!
In other news my father and his wife, who already have a 5 year old adopted from China, has sent in the application to adopt a "waiting child" from China. These are often children, to my understanding, that may have slight medical problems. They also can be older children. They are almost always girls and I believe that they requested a girl this time. They hope to get their doctuments (including a picture of little Miss Emily, as last time there was a picture of me) to China by this spring, with a hopeful going to China and a homecoming of next summer. This is much faster then the 2 years that they waited the first go around. My sister came over when she was 10 months old for those who don't know. Hopefully they will (hint, hint) create a blog of their own so everyone can follow their progress. I will let you know more information as it is available to me.
Jennifer
Tuesday, December 05, 2006
Emily's new device
Hello,
Well Emily did rather well yesterday. She couldn't get her oxygen lowered over night and didn't take any bottles but by the time I saw her she really wanted to be held. So I did that. She breast fed well from me taking about 15 to 46(!) cc's or 1/2 oz. to 1.5 oz from me. Her stats also improved with me there. They decided to try her on a different nasal canula. They can give her more humidity and more flow with this canula. The hope is to eliminate the oxihood. So far it has worked well. She is on a flow rate of 4 liters per minute and an oxygen rate of 70% last I heard. Hopefully they will be able to lower her flow soon. The only bad thing about this canula system is has a tube that is only about 4 feet long so she is really tied down as far as how far she can be from the source. In other words her already small world got smaller! However this new canula is helping her and last I heard she took 1/2 of her 12 midnight and her 4 am feedings by bottle!
That is about all the news I have for now. Sorry for no pictures I didn't have the camera with me when I sat at the computer and I am multitasking as it is. I will tell Tony to post some pictures tonight.
Jennifer
Well Emily did rather well yesterday. She couldn't get her oxygen lowered over night and didn't take any bottles but by the time I saw her she really wanted to be held. So I did that. She breast fed well from me taking about 15 to 46(!) cc's or 1/2 oz. to 1.5 oz from me. Her stats also improved with me there. They decided to try her on a different nasal canula. They can give her more humidity and more flow with this canula. The hope is to eliminate the oxihood. So far it has worked well. She is on a flow rate of 4 liters per minute and an oxygen rate of 70% last I heard. Hopefully they will be able to lower her flow soon. The only bad thing about this canula system is has a tube that is only about 4 feet long so she is really tied down as far as how far she can be from the source. In other words her already small world got smaller! However this new canula is helping her and last I heard she took 1/2 of her 12 midnight and her 4 am feedings by bottle!
That is about all the news I have for now. Sorry for no pictures I didn't have the camera with me when I sat at the computer and I am multitasking as it is. I will tell Tony to post some pictures tonight.
Jennifer
Sunday, December 03, 2006
Thirteen Days Old, Corrected
Emily is still packing on the weight- she now weighs 2600 grams, or 5 pounds, 11 ounces.
She had a pretty good day yesterday and did well through the night. She was very congested yesterday and had to be suctioned, but she had a good session with occupational therapy and slept a lot. She has also started taking her feeds from her bottle again. The pictures today show Emily in her brand-new hat that her Mom made for her yesterday. (All of the nurses seemed quite impressed.) Jennifer held Emily on her knee while doing some knitting, and she seemed to enjoy that. Emily has also been getting much more expressive with her eyes and face. It's hard to describe, but she's furrowing her brow and moving her eyes in more suble ways. She's also starting to look to her left more while she's in the crib because people have started to approach her from that direction and she's starting to get some stimulation there.
Although it looks like we'll be spending Christmas with Emily in the hospital, I think that she would like it. To put it another way:
Brand-new pacifier - $2.00
Yarn for cute little hat - $5.00
Brand-new pulse-ox - $15.00
Cute little preemie outfit - $30.00
Christmas dress to have my picture taken with Santa - $40.00
Dr. Brown's bottle with preemie nipples - $60.00
2007 Honda Odyssey- $29,400.00
5+ month stay in the NICU - $???,???.??
Spending the holidays with Mommy and Daddy - Priceless
While Emily was breast feeding yesterday, she got tired and grabbed Mom with both hands (a double-fisted drinker!), turned her head, put Mom's nipple in her ear and fell asleep. Mom thought that this didn't look too comfortable and tried to move her. This led to some of Emily's loudest screams yet, accompanied by some oxygen desaturation alarms before she finally won the argument, put Mom's nipple back in her ear and went to sleep. I'm not sure that this was the kind of drinking problem that the doctor was referring to when she said that Emily still needed to work on feeding before she could go home.
Tony
Friday, December 01, 2006
Emily's Lungs
I thought I would post a generic picture of what Emily's lungs are like. Neither photo is of Emily. The one below is what Emily's lungs looked like the last time we saw an x-ray (a month or so ago). We have been told they have seen some improvement but not much since then.
This is what a normal lung would look like if she had been born as most babies are.
Just thought it would help people understand what we are up against.
Jennifer
This is what a normal lung would look like if she had been born as most babies are.
Just thought it would help people understand what we are up against.
Jennifer
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