Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Oh my. I do not have any answers for you except to say that no one really jnows what tomorow will bring. Go with your heart and let it tell you what to do. When our daughter was born doctors gave us terrifying outlooks about her health and her life in which much of what they said was worse than reality. Then again there were times doctors said things were bertter than what reality was. They just can't tell you anything 100%. Make each day have something good to look at. If you can't do that than find a good moment. Just holdoing or looking at her is a blessing. sounds so beautiful and it appears she is an angel. Again, I found that most of us realize we must go with your hearts for our children. And then don't feel guilty about doing too much or doing too little. Just let feel your love. Please know we are all keeping you in our thoughts and prayers. Bonnie, mom to a 22, Patty CHARGE 20, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Keri, I wish I had easy answers for you, but there just arent any. Just try to take things one day at a time, or even an hour at a time. You'll amaze yourself, and your daughter will amaze you even more. I know lots of parents here will have better words and stories to share... youre not alone!! thinking of you and your whole family, Mark mom to Sara 9 months > I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swelled. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. > When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 When my son Nicky was born 8 weeks early, my ex and I got very overwhelmed by the amount of anomolies associated with CHARGE. It was hard to absorb everything the docs were telling us. He had the gamet of tests but I decided to trust my maternal instincts. I even showed the head of the NICU that my son had some residual hearing despite an ABR that indicated he was deaf. One thing I did was take things one day at a time. I decided not to research CHARGE because I couldn't worry about the future while the present was so overwhelming. For me this worked. Now like the rest of the members of this list, I am an " expert " when it comes to my son--some professionals actually treat me like I know more too! Believe in your instincts. Mothers often know more than the docs do. I also put Nicky into G-d's hands. I felt if my son was meant to be then he would. My son not only survived but has made me a much better person and made his older sister a very compassionate young lady. My prayers are with you and your beautiful daughter. Ellie J Mom to Becca, 14 and Nicky, 12 (my CHARGEr) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I am so sorry for your pain. I wish I had an answer for you, I don't. I feel every life has value and can teach someone something....I hope you find the answers you are looking for, that the sun starts to shine on your little beauty and all is as good as it can be. hugs to you all --you are in my thoughts. , mom to Timmy 9ChARGE, keegan 6 liam 4 wife to pat help > > I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swelle > d. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. > When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Hi! My daughter (now 7 yrs) did not have the life-threatening issues that you are dealing with. She did have a serious enough heart condition requiring an aorta repair at 8 days, but as far as heart surgeries go it was a relatively easy thing. She has the effects of CHARGE in nearly every body and sensory system, but most are on the mild end of the spectrum. In infancy, we didn't know if she could see or hear, if she'd ever talk or eat, if she'd walk, etc. Now she goes to regular 1st grade with an aide, is doing very well academically, has a large group of loving friends, etc. I can relate to the feelings of being overwhelmed. That part really does get better. Sometimes it takes years to find a new " normalcy " that you can feel comfortable with, but it does happen. As far as when enough is enough, thankfully, I've not had to ask that question. It seems so awful to me that anyone has to ask that when looking at their newborn. My heart is with you as you struggle through this time. I hope that will recover and surprise you with her joy and abilities. Even though most of our kids can't do everything their peers do, or can't do it to the same level of skill, or don't achieve their milestones on the same timetable, they can do amazing things with their angelic spirit, their joyful outlook, and their sheer determination. My hope is that the outlook for is incorrect and she survives to be a strong little girl. But if the worst happens and you have to let go, please be comforted in knowing that you are doing all that you can. And sometimes, letting go may be all that you can do. The only thing I can relate it to is the struggle we have with all of the medical and therapeutic interventions -- they can't all be done at once. We have to constantly prioritize and tackle one thing at a time. I recall when we had several therapists coming to our home and each one had some " little " thing I was to do with Aubrie daily. It seemed easy to them, but those " little " things added up. Sometimes I didn't have time for any because I was consumed with survival -- eating without throwing up, throwing up without choking, etc. My thought is that you are dealing with prioritizing what to deal with first. How to manage so many issues at once. And the guilt that goes with putting something on the back burner. Do the best you can. Do it with the best information you can get at the time. Do it with love. And realize that that's all there is. As Bonnie said, love so that your love can sustain and strengthen her or can give her comfort and peace. Either way, have no regrets. We are all here to answer questions. You'll find that there is usually at least one person who has been there, done that. We are also here to listen to grief, frustration, and anger when it needs to be vented. For most of us, the list is the only place we can share those feelings that others (no matter how loving and supportive) simply can't truly understand. Warm thoughts being sent your way- Michele W mom to Aubrie 7 yrs CHaRgE and 13 yrs KERIPURG wrote: > I am a new parent of a little 6 week old girl with CHARGE. My husband > and I are searching our soul's asking when do you say enough is > enough. had 3 surgeries in the first 2 weeks to correct > bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC > would be a progressive problem, that could lead to death. She also has > coloboma of the retina that includes her optic nerve in both eyes, the > eye doctor tells us that she will be blind for sure in her small eye > and the best we could hope for in her normal eye would be for her to > see light and dark. She also has bad reflux and is unable to nipple > due to aspirating, currently the surgeons are waiting until she is 6 > pounds to consider doing a surgery to help correct the reflux. They > told us about three weeks ago after a CT scan that she also has > Dandy- syndrome and some bleeding around her brain and in her > ventricles, at that time it was not a problem and would continue to > monitor it to see if her head swelled. Today after a MRI we were told > that she has to much fluid in her ventricles, that her brain tissue > had absorbed blood, that she will need a shunt to prevent any further > damage and to allow to fluid to circulate better. Like many things he > doctors are unable to tell us what her prognosis will be and how much > damage has been done to her brain tissue, it seems as if the list of > problems seems to go on and on. > When you look at my daughter you would never know there was anything > wrong with her, she looks perfect. She is the most beautiful little > girl in the world, she has so much fight in her. I tell her to keep > fighting and when she had to much it's ok to let go. So I guess the > question is after reading very thing we can find on CHARGE talking to > the doctor's and reading this website. When do we say enough is enough > , do we every say that??? What will be her quality of life??? Will her > life be filled with pain and suffering, procedure after procedure?? > Maybe I'm looking for an answer no one has, but insight from other > parents with children in similar situations would be helpful. I am not > hopeless of her situation just lost and confused. > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 My response is similar to the others you've received. My daughter had a horrible first year and my heart aches reading your message. There were times we were literally living minute by minute not knowing how long we would be blessed to have living with us. We agonized over the medical torture we put her through but you do what you have to do and we have to live with our decisions. made it and she's now 4 1/2. I still thank God every day for the gift of her living that day because I don't know how long I'll get to keep her--every day with is a gift. It sounds like you are " gifted " with days as well. I am not trying to influence your decision, I just want to share my experience and empathize with your pain right now. I had never felt physical pain from love until was born--I am so sorry that you are hurting so much. Lori Myers Spouse - Trent, Children - (7), (4, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!), and Emma (2) Dallas, Texas help > > I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swelled. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. > When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 I am 26 years old, and been through a lot of surgeries, pain and suffering during the first two years of my life, spent most of those years in the hospital due to the numerous medical problems that had to be delt with. As long as she knows that she is loved, she will walk through life with enthusiam, a smile on her face, and a determination to never give up. So far she has showed you that love goes a long way. There aren't any easy answers to tell you how her life will be, but let me tell you from my experience, it will get better and she will have a life you've always wanted her to have. Trust yourself. A parents insticts are the best way to determine weather your child is getting the best medical care possible. We are here for you. Sincerely yours; Krista Bach. KERIPURG wrote: I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swelled. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Hello - From the keyboard of KERIPURG: > I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. ... I so vividly remember when my husband and I were faced with the same decision. It was so painful and hard! But the people on this list were such a great resource for us and helped us so much to make that decision so you really have come to the right place. It's one that no parent should ever have to make IMHO since it's just so unfair. Once we decided, it felt like the weight of the world had been lifted from our shoulders and we could enjoy the short time that we did have with Sara. Of course, it was hard to get to know her in the NICU but we did the best we could and don't regret any of it. No one can make the decision for you, but we can all offer to help as best we can. Please let me know how I can help. If you want to email me offlist (debbie @ icus . com -- remove the spaces), please do and/or we could talk on the phone (we can exchange numbers in private email). I suggest that you follow your heart (as others have said) and try to consider what decision will allow you to find the most peace and have the least regrets. It's hard but since your baby can't speak yet, you need to do so for her. Hugs, Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 We also had the same thoughts when our son was born. It is extremely overwhelming, almost like to the point you don't know how to decipher what is what and how to make decisions. There wasn't one part of his body that wasn't affected by CHARGE and plus more. I'll never forget when I was pregnant and in my 9th month I found out both hands were malformed. I thought that it was the most devastating problem in the world. Then when he was born, no one expected what came out. But, through all the challenges, 20+ surgeries, long multiple hospital stays, therapies, there was always a spark in his eye and determination and such a strong will to live and to succeed. The more he gave to us the more we pushed to make it better for him. I became stone, just pushing ahead to do whatever it took to get him healthy and functional. There was a lot of pain, suffering and wondering if we were doing the right things. That pain has certainly not ended for me, since all the memories are so vivid, but my son is a happy kid. Today my son is 7.5 years old, and does most everything a 2nd grader would do. He walks, talks, is very smart, though very challenging at times. When he turns around to me and says " go away Mommy, I don't need you " , I know that all the decisions we made were the right ones. Don't give up on your daughter she will definitely amaze you. Krista is right. Debbie Matasker Re: help I am 26 years old, and been through a lot of surgeries, pain and suffering during the first two years of my life, spent most of those years in the hospital due to the numerous medical problems that had to be delt with. As long as she knows that she is loved, she will walk through life with enthusiam, a smile on her face, and a determination to never give up. So far she has showed you that love goes a long way. There aren't any easy answers to tell you how her life will be, but let me tell you from my experience, it will get better and she will have a life you've always wanted her to have. Trust yourself. A parents insticts are the best way to determine weather your child is getting the best medical care possible. We are here for you. Sincerely yours; Krista Bach. KERIPURG wrote: I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swell ed. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 " She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. " LAUREN'S PARENTS, 20 years ago my husband and I were in a " similar pair of shoes " . Our daughter was a " fighter " too. At that time CHARGE was not know in our daughter's hospitals. The above quote is amost word for word what I said to our . I have tears in my eyes as I type. 's first few years were terrifying. Her life hasn't been easy but 28 surgeries, countless hospitalizations and illness later, she is a survivor and very lucky to have a fairly normal life. We learned of CHARGE when she was 17 years old.( Long story) She had/has mostly the medical parts of CHARGE. On this list CHARGE takes many forms. You will find all kinds of support. I can't help you wrestle with the " when is enough is enough " , but do understand " can't tell you what the quality of life will be " . That's what we were told 20 years ago. The doctors didn't give us much hope at the time. They had no idea. What you will find on this list this that many many parents have watched their CHARGE kids prove the profesionals wrong. Prayers, Blessings and Hugs, Lynn Mom to Tom 25, 20 cHARGE, and wife to Doug help I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swelled. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. ---------- No virus found in this outgoing message. Checked by AVG Anti-Virus. Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 --Hello and yor child IS perfect ....I like Debbie am speaking from experince about the whole how much is to much thing (not that everyone on this list hasnt experienced that LOL) You will no when/if enough is enough, your child will let you know... Just untill things calm down with her live like she might not be there tomorow ..Thats what I did for my son , for 22 months 4 day, 13 and 1/2 hours I didnt take any time I had with him for granted and when he needed to go he let me know and I have no regrets ..Email me privately if you want to talk more at mchicken6@... mom to C.H.A.R.G.E.r 9/30/01-8/3/03 and 3/27/03 - In CHARGE , " KERIPURG " <KERIPURG@A...> wrote: > I am a new parent of a little 6 week old girl with CHARGE. My husband and I are searching our soul's asking when do you say enough is enough. had 3 surgeries in the first 2 weeks to correct bilateral choanal atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive problem, that could lead to death. She also has coloboma of the retina that includes her optic nerve in both eyes, the eye doctor tells us that she will be blind for sure in her small eye and the best we could hope for in her normal eye would be for her to see light and dark. She also has bad reflux and is unable to nipple due to aspirating, currently the surgeons are waiting until she is 6 pounds to consider doing a surgery to help correct the reflux. They told us about three weeks ago after a CT scan that she also has Dandy- syndrome and some bleeding around her brain and in her ventricles, at that time it was not a problem and would continue to monitor it to see if her head swelled. Today after a MRI we were told that she has to much fluid in her ventricles, that her brain tissue had absorbed blood, that she will need a shunt to prevent any further damage and to allow to fluid to circulate better. Like many things he doctors are unable to tell us what her prognosis will be and how much damage has been done to her brain tissue, it seems as if the list of problems seems to go on and on. > When you look at my daughter you would never know there was anything wrong with her, she looks perfect. She is the most beautiful little girl in the world, she has so much fight in her. I tell her to keep fighting and when she had to much it's ok to let go. So I guess the question is after reading very thing we can find on CHARGE talking to the doctor's and reading this website. When do we say enough is enough , do we every say that??? What will be her quality of life??? Will her life be filled with pain and suffering, procedure after procedure?? Maybe I'm looking for an answer no one has, but insight from other parents with children in similar situations would be helpful. I am not hopeless of her situation just lost and confused. > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 I am an adult CHARGEr and I say don't give up on her! Kay help > > I am a new parent of a little 6 week old girl with CHARGE. My husband and > I are searching our soul's asking when do you say enough is enough. > had 3 surgeries in the first 2 weeks to correct bilateral choanal > atresia,EA/TEF, and NEC. They are unsure if the NEC would be a progressive > problem, that could lead to death. She also has coloboma of the retina > that includes her optic nerve in both eyes, the eye doctor tells us that > she will be blind for sure in her small eye and the best we could hope for > in her normal eye would be for her to see light and dark. She also has bad > reflux and is unable to nipple due to aspirating, currently the surgeons > are waiting until she is 6 pounds to consider doing a surgery to help > correct the reflux. They told us about three weeks ago after a CT scan > that she also has Dandy- syndrome and some bleeding around her brain > and in her ventricles, at that time it was not a problem and would > continue to monitor it to see if her head swelled. Today after a MRI we > were told that she has to much fluid in her ventricles, that her brain > tissue had absorbed blood, that she will need a shunt to prevent any > further damage and to allow to fluid to circulate better. Like many things > he doctors are unable to tell us what her prognosis will be and how much > damage has been done to her brain tissue, it seems as if the list of > problems seems to go on and on. > When you look at my daughter you would never know there was anything wrong > with her, she looks perfect. She is the most beautiful little girl in the > world, she has so much fight in her. I tell her to keep fighting and when > she had to much it's ok to let go. So I guess the question is after > reading very thing we can find on CHARGE talking to the doctor's and > reading this website. When do we say enough is enough , do we every say > that??? What will be her quality of life??? Will her life be filled with > pain and suffering, procedure after procedure?? Maybe I'm looking for an > answer no one has, but insight from other parents with children in similar > situations would be helpful. I am not hopeless of her situation just lost > and confused. > ---------- > > No virus found in this outgoing message. > Checked by AVG Anti-Virus. > Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 wow, what a struggle this is, so heart wrenching. my only advice is to pray to God for guidance. Only He knows the plan for your little baby. And take it 1 day at a time, answers will become clearer with the passage of time. good luck, barbra m help > > >> >> I am a new parent of a little 6 week old girl with CHARGE. My husband >> and >> I are searching our soul's asking when do you say enough is enough. >> >> had 3 surgeries in the first 2 weeks to correct bilateral choanal >> atresia,EA/TEF, and NEC. They are unsure if the NEC would be a >> progressive >> problem, that could lead to death. She also has coloboma of the retina >> that includes her optic nerve in both eyes, the eye doctor tells us that >> she will be blind for sure in her small eye and the best we could hope >> for >> in her normal eye would be for her to see light and dark. She also has >> bad >> reflux and is unable to nipple due to aspirating, currently the surgeons >> are waiting until she is 6 pounds to consider doing a surgery to help >> correct the reflux. They told us about three weeks ago after a CT scan >> that she also has Dandy- syndrome and some bleeding around her >> brain >> and in her ventricles, at that time it was not a problem and would >> continue to monitor it to see if her head swelled. Today after a MRI we >> were told that she has to much fluid in her ventricles, that her brain >> tissue had absorbed blood, that she will need a shunt to prevent any >> further damage and to allow to fluid to circulate better. Like many >> things >> he doctors are unable to tell us what her prognosis will be and how much >> damage has been done to her brain tissue, it seems as if the list of >> problems seems to go on and on. >> When you look at my daughter you would never know there was anything >> wrong >> with her, she looks perfect. She is the most beautiful little girl in the >> world, she has so much fight in her. I tell her to keep fighting and >> when >> she had to much it's ok to let go. So I guess the question is after >> reading very thing we can find on CHARGE talking to the doctor's and >> reading this website. When do we say enough is enough , do we every say >> that??? What will be her quality of life??? Will her life be filled with >> pain and suffering, procedure after procedure?? Maybe I'm looking for an >> answer no one has, but insight from other parents with children in >> similar >> situations would be helpful. I am not hopeless of her situation just lost >> and confused. >> ---------- >> >> No virus found in this outgoing message. >> Checked by AVG Anti-Virus. >> Version: 7.0.300 / Virus Database: 265.6.9 - Release Date: 1/6/05 >> >> >> Quote Link to comment Share on other sites More sharing options...
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