JennifersHope
New member
Hi,
I was looking for an update from Jenn on how her baby was doing????
Jennifer
32 w/CF and Addison's
I was looking for an update from Jenn on how her baby was doing????
Jennifer
32 w/CF and Addison's
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Baby in NICU
- Thread starter jenniferp
- Start date
Dear Jen
Congratulations on your new arrival
I am so sorry to hear what these doctors have put you through, I would follow Julie' advice and make sure that they do not get the chance to do this to another baby and parents, hey by the way i do not blame you for leaving the hospital , i did the same thing with my last child who the doctors believed had CF and transported her to Childrens, little did they know i was right behind them!!
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Congratulations on your new arrival
I am so sorry to hear what these doctors have put you through, I would follow Julie' advice and make sure that they do not get the chance to do this to another baby and parents, hey by the way i do not blame you for leaving the hospital , i did the same thing with my last child who the doctors believed had CF and transported her to Childrens, little did they know i was right behind them!!
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Dear Jen,
Bless your heart!! My heart is crying for you and your family. I am just sick that the doctors did not listen to your concerns and take the risks of his bowel rupturing seriously. Baby Andrew looks so big, strong and HANDSOME!!! He also looks like a fighter, he will fight what ever comes his way.
You are in our thoughts and prayers!
Blythe
mom to Brinly 1 w/cf and Birgess 3 w/o
Bless your heart!! My heart is crying for you and your family. I am just sick that the doctors did not listen to your concerns and take the risks of his bowel rupturing seriously. Baby Andrew looks so big, strong and HANDSOME!!! He also looks like a fighter, he will fight what ever comes his way.
You are in our thoughts and prayers!
Blythe
mom to Brinly 1 w/cf and Birgess 3 w/o
Jen,
My daughter will be a year old on the 11th of October, and although has passed her initial blood test, still has to take the sweat test to test for CF. She too had an obstruction and I felt VERY cheated because my OB failed to do many things, and listening to me was one of them. I'm currently looking into the situation, but I do understand your frusteration. Please feel free to IM me if you'd like to talk:
yahoo is bacjkk
aim is sweetpie0104
Amy
BTW, what a beautiful BIG boy you have!!!
My daughter will be a year old on the 11th of October, and although has passed her initial blood test, still has to take the sweat test to test for CF. She too had an obstruction and I felt VERY cheated because my OB failed to do many things, and listening to me was one of them. I'm currently looking into the situation, but I do understand your frusteration. Please feel free to IM me if you'd like to talk:
yahoo is bacjkk
aim is sweetpie0104
Amy
BTW, what a beautiful BIG boy you have!!!
Jen,
I am so sorry to hear about your situation. I know all about the NICU road, and it isn't fun. My daughter was diagnosed at 6 months after DFCS took her and my son for her failure to thrive.
We are constantly making trips to TC Thompson's Hospital in Chattanooga, TN. As a matter of fact we just got out Sunday. The road for everyone is different and I hope yours turns out better. I spent 6 months researching CF while my children were in foster care and continue to do research. If you ever need someone to talk to, please feel free to contact me awolf5102001@yahoo.com, please put CF as the subject on first email so that I don't delete it.
As I have had other mothers of CF patients tell stand up for your baby and make your opinions known because you know the baby best and the baby cant speek for itself.
best wishes
Kathie
I am so sorry to hear about your situation. I know all about the NICU road, and it isn't fun. My daughter was diagnosed at 6 months after DFCS took her and my son for her failure to thrive.
We are constantly making trips to TC Thompson's Hospital in Chattanooga, TN. As a matter of fact we just got out Sunday. The road for everyone is different and I hope yours turns out better. I spent 6 months researching CF while my children were in foster care and continue to do research. If you ever need someone to talk to, please feel free to contact me awolf5102001@yahoo.com, please put CF as the subject on first email so that I don't delete it.
As I have had other mothers of CF patients tell stand up for your baby and make your opinions known because you know the baby best and the baby cant speek for itself.
best wishes
Kathie
I hate to post this but I could really use some support.
The neurologist came in to see Andrew today and after viewing the MRI and EEG results they informed us he will have Cerebral Palsy, he will never walk, talk or see, he will never breath or eat on his own and will requre a ventilator and g-tube for feeding. All of this on top of the Cystic Fibrosis. My husband and I have cried until there are no tears left in either one of us.
Its so crazy, I remember when I first found out the baby would have CF I was so torn up...now that seems like nothing.
They spoke briefly with us about shutting off the ventilator and just letting him go. This just hurts so bad, I don't want him to live like this but how do you make a decision like that? I'm horrified and my whole family is a crying mess.
The neurologist came in to see Andrew today and after viewing the MRI and EEG results they informed us he will have Cerebral Palsy, he will never walk, talk or see, he will never breath or eat on his own and will requre a ventilator and g-tube for feeding. All of this on top of the Cystic Fibrosis. My husband and I have cried until there are no tears left in either one of us.
Its so crazy, I remember when I first found out the baby would have CF I was so torn up...now that seems like nothing.
They spoke briefly with us about shutting off the ventilator and just letting him go. This just hurts so bad, I don't want him to live like this but how do you make a decision like that? I'm horrified and my whole family is a crying mess.
Jen,
I am so so so sorry for you and your husband. Nothing I can do or say at this point is going to make this any easier for the two of you, I know you and your husband will do what is best for your lives and that of your baby boy. When you are ready, if you decide to take action against the doctor, I can assist you. I am not sure what other support I can offer to you at this point other than just being here.... if you ever need to talk, you have my email address and I will give you my phone number from there.
Do you need help getting your records? I might be able to assist with that. I am so sorry this has happened, I pray for strength for your family.
Julie
I am so so so sorry for you and your husband. Nothing I can do or say at this point is going to make this any easier for the two of you, I know you and your husband will do what is best for your lives and that of your baby boy. When you are ready, if you decide to take action against the doctor, I can assist you. I am not sure what other support I can offer to you at this point other than just being here.... if you ever need to talk, you have my email address and I will give you my phone number from there.
Do you need help getting your records? I might be able to assist with that. I am so sorry this has happened, I pray for strength for your family.
Julie
Dear Jen
My heart is breaking for you and i also will be praying for strengh for you and your family, I am also very sad to hear that you have to go through this and i can only imagine the pain you are feeling. There is nothing one can say to you to make any of your situation any easier or less painful, you are truly in my prayers.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
My heart is breaking for you and i also will be praying for strengh for you and your family, I am also very sad to hear that you have to go through this and i can only imagine the pain you are feeling. There is nothing one can say to you to make any of your situation any easier or less painful, you are truly in my prayers.
Kaitsmom<img src="i/expressions/rose.gif" border="0">
I am so sorry to hear of the official outcome. I want to share a story with you. I dont know if it will help you handle things better, but I find it an "ironic" storie. I had a Supervisor when I was still working who was pregnant & due 5 months after me. She was a sweet, church going christian. She was 39 when she got pregnant so choice to go thru amnio. Before she got the results she told me that if the results came back showing any defects that she would probably terminate because she couldnt handled a caring for a special needs child. This amazed me coming from a Christian, but I realize that was the human in her coming out instead of what people usually would say. Anyway the results came back fine, she had a beautiful baby boy & things were fine. Then she tried to breastfeed for the first time. From there on things went down hill. Not exactly knowing what happened in full detail the summary is that the baby stopped breathing, was rush to our closest trauma center which is over 2 hours away. They were told he wouldnt live thru the nite. Here we are 7 years later & he has CP. He has had his esophagus (sp?) tied (dont know the name of procedure) to avoid acid reflux, has had hip surgery, has a feeding tube, chronic infections of which they use Tobi & CPT along with Cipro & others because he has cultured pseudomonas. They tested him for Cf because of all the similiarities. He cant talk, but most certainly can communicate in other ways. My point is that she stated she couldnt handle a special needs child & she was still given one. He is their pride & joy. Its a lot of work, but they refuse to put him in a "home". In the meantime they had another baby so now Daniel has a baby sister. She is her brothers sunshine. The responses given by him when she is around is amazing. Of course to understand what he wants takes time & patience, but its obvious when he wants to get his point across. Is it what they wanted their son to be like....hell no. Do they still love him....hell yes. Would they trade him....hell no. He offers his own flare &m positive aspects to their lives. Many people see it as a shame or a waste & even tho they didnt think they would....they see him as a blessing! I hope this gives you a little encouragement to deal with the future. I dont want it to see like it will be an easy road, but I do want you to realize that you still have a blessing whatever happens!
Melissa-
I wish there were something left of my baby, like the child you speak of, but the prognosis is so bad I don't think he could be as much as that child is. CP has so many different degrees and my baby Andrew has the worst. This is what the doctors offical report said:
Present exam suggest long-term prognosis is poor, with no chance of normal development. Outcome with survival, apart from additional complications related to CF, will likely include severe spastic quadriplegia, profound mental retardation, with which there should be no expectation of ambulation or speech. Concern also exists about possible cortical visual impairment. Bulbar dysfunction, with impaired coordination of swallowing and breathing, may necessitate reliance on feeding by G-tube and/or placement of tracheostomy tube. No present inducation of seizure activity, although patient remains at high risk of later seizures and need for chronic anticonvulsant therapy.
I feel that if I keep him on all of this medication and equipment I'd only be doing it for myself and I know if I was in Andrew's place I would not want to live like that. It seems like no life at all.
A previous post mentioned something about reflux; yesterday they took Andrew down to ex-ray because of his reflux but they haven't yet told us what the problem is...not that I can really handle hearing about another problem.
Thank you all so much for your support it means so much to me.
Jen
I wish there were something left of my baby, like the child you speak of, but the prognosis is so bad I don't think he could be as much as that child is. CP has so many different degrees and my baby Andrew has the worst. This is what the doctors offical report said:
Present exam suggest long-term prognosis is poor, with no chance of normal development. Outcome with survival, apart from additional complications related to CF, will likely include severe spastic quadriplegia, profound mental retardation, with which there should be no expectation of ambulation or speech. Concern also exists about possible cortical visual impairment. Bulbar dysfunction, with impaired coordination of swallowing and breathing, may necessitate reliance on feeding by G-tube and/or placement of tracheostomy tube. No present inducation of seizure activity, although patient remains at high risk of later seizures and need for chronic anticonvulsant therapy.
I feel that if I keep him on all of this medication and equipment I'd only be doing it for myself and I know if I was in Andrew's place I would not want to live like that. It seems like no life at all.
A previous post mentioned something about reflux; yesterday they took Andrew down to ex-ray because of his reflux but they haven't yet told us what the problem is...not that I can really handle hearing about another problem.
Thank you all so much for your support it means so much to me.
Jen
I just keep reading your first post and thinking...why, why, why! I am just sick reading this. Everyone always says that God only gives us what we can handle, but I wonder - who in hell could handle this? I am praying for your family as you make this very tough decision. I don't know what I would do in your situation, but have faith and know that whatever decision you make will be because you love your son and only want the best for him. My heart goes out to you and my prayers will be with you. I know I don't know you, but wish I could be there to give you a hug. Peace and blessings to you and your family.
I will keep you and your family in my thoughts. I know I'm going to get jumped on for this, but I think if it was my family, I would let him go. We had to make a similar decision and as heart wrenching as it was, it was the right decision (for us) to remove the support and if she couldn't make it on her own, then she wasn't meant to be here with us. She didn't stay with us and it was almost therapeutic for us to let her go. We knew she wasn't in pain anymore and wherever she was going had to be better than where she was.
Hang in there......Do what's right for you and your family.....Someone is watching over you !!
Hang in there......Do what's right for you and your family.....Someone is watching over you !!
Jen,
May God be with you during this difficult time, and may He lead you in your decisions. Look to Him, because He knows our sorrows, and bears our burdens. Know that I will be praying for you and your little one.
May His love surround you and His strength support you,
Edna
May God be with you during this difficult time, and may He lead you in your decisions. Look to Him, because He knows our sorrows, and bears our burdens. Know that I will be praying for you and your little one.
May His love surround you and His strength support you,
Edna
Deidre-
I remember when I first came to find this website. I was in a position similar to yours and I remember how devastated I was when I got the results of my amnio that confirmed Andrew had CF. I know how tough of a time this is for you and your family but I truely envy you. Oh, how I wish I could go back and change so many things.
Please keep us all posted on how baby Lilly is doing, I'll be thinking of you.
I had to visit the OB/GYN today because my breasts are KILLING ME! I have been pumping every three hours since Andrew was born because I really wanted to breastfeed, and now I am in so much pain I can hardly stand it. But the visit at the OB was awful, there were all these happy pregnant women with all these great hopes and dreams and I just wanted to cry sitting in the waiting room. I feel so cheated. I feel like I was robbed. I want so much to be pregnant again. I don't know if its just because I long to hold my baby and I know I never will bring him home to his room that is all made up with a crib and changing table and all the things that go along with a new baby, or if I really do want to do this again. I've heard some of you speak of a procedure that can eliminate the possability of CF with IVF. Maybe someday we can go that route.
Jen
I remember when I first came to find this website. I was in a position similar to yours and I remember how devastated I was when I got the results of my amnio that confirmed Andrew had CF. I know how tough of a time this is for you and your family but I truely envy you. Oh, how I wish I could go back and change so many things.
Please keep us all posted on how baby Lilly is doing, I'll be thinking of you.
I had to visit the OB/GYN today because my breasts are KILLING ME! I have been pumping every three hours since Andrew was born because I really wanted to breastfeed, and now I am in so much pain I can hardly stand it. But the visit at the OB was awful, there were all these happy pregnant women with all these great hopes and dreams and I just wanted to cry sitting in the waiting room. I feel so cheated. I feel like I was robbed. I want so much to be pregnant again. I don't know if its just because I long to hold my baby and I know I never will bring him home to his room that is all made up with a crib and changing table and all the things that go along with a new baby, or if I really do want to do this again. I've heard some of you speak of a procedure that can eliminate the possability of CF with IVF. Maybe someday we can go that route.
Jen
Jen,
I/we are here, regardless of the decision you make. I am not sure if it is even relevant to you and your family right now about "what anyone else would do in this position" but in case you are wondering, and I see that others have posted it.... I know what it is like to want and yearn for a child. The closest Mark and I have been to getting there is the day before his sperm retrieval was SUPPOSE TO occur, but we havent made it past that point yet. I can not imagne the feelings of having a baby and having this scenario happen. But I do know this, I personally NEVER want to suffer and my husband has requested of me and his family that if he is suffering and will not be "useful" (in his own terms/opinions/beliefs that he has expressed) anymore, that we let him go. I can only imagine how much more diffiult it is for you since Andrew can't speak what he wants..... only you two can figure out what you want to do.
Regardless, we are here for you though!
I wish I could just give you a hug!!!!!!!!
I/we are here, regardless of the decision you make. I am not sure if it is even relevant to you and your family right now about "what anyone else would do in this position" but in case you are wondering, and I see that others have posted it.... I know what it is like to want and yearn for a child. The closest Mark and I have been to getting there is the day before his sperm retrieval was SUPPOSE TO occur, but we havent made it past that point yet. I can not imagne the feelings of having a baby and having this scenario happen. But I do know this, I personally NEVER want to suffer and my husband has requested of me and his family that if he is suffering and will not be "useful" (in his own terms/opinions/beliefs that he has expressed) anymore, that we let him go. I can only imagine how much more diffiult it is for you since Andrew can't speak what he wants..... only you two can figure out what you want to do.
Regardless, we are here for you though!
I wish I could just give you a hug!!!!!!!!
Jen, Hopefully I can type through my tears for you and your family. I haven't posted yet because I don't know what to say. What is there to say? I just hope that you and your family can find the strength to do what is best for Andrew. If you choose to send him to a better place, just know that he will be at peace. It will take you and your family longer to find that peace, but knowing he is in comfort will help you through it. Our prayers are certainly with you and yours.