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My son was born at 28 weeks and lived for seven days in the nicu at John Hopkins Hospital. I was hopeing to talk to some people that have been through a loss of an infant. I am struggling to get through everyday since we have lost our precious son. It has been 10 months since we lost him. I miss him everyday and think about him all the time. ↓
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| Name: VB | Date: Nov 1st, 2007 9:46 AM |
http://health.groups.yahoo.co
m/group/cristinsprayer/
here
is a yahoo group I found, there are more also, just do a search when you get there. ↑ |
| Name: Mary Kline | Date: Nov 1st, 2007 3:49 PM |
| Thank you VB. I did go onto heath.group and became a member. ↑ |
| Name: KathyK | Date: Dec 16th, 2007 9:44 PM |
My husband and I had a daughter 10 years ago on August 16, 1997. She had severe brain damage (holoprosensephly)cleft pallet and lip and congenital heart disease. Her name was Ashley and she was beautiful despite the cleft lip and pallet. She was born in New York Hospital in Manhattan and after 3 weeks of being in the nic unit there we had her moved to a children's hospital in NJ. She lived in that hospital for 4 months and was on a feeding tube and we only had her home for weekends and Thanksgiving. She died on Dec.21st of 1997 and even 10 years later we miss her just as much as we did when she first passed away. Christmas the first year was the hardest but since then it has never been the same. We went on to have 2 more beautiful children and if we didn't have them we would (or I wouldn't)be the same. It is a struggle to get through the day when it first happens and it takes a long time to get to a point that you can function daily. I was at the hospital everyday while Ashley was alive I spent as much as time with her as I could and so after she died I didn't know what to do with myself the first day. I felt lost and didn't want to get out of bed and the first day I walked around my apartment in a fog.
This October I lost my mother so this christmas is going to be even harder on us because I am thinking of my baby and my mother, but I am trying to take comfort in knowing that my baby girl is with her grandmother.
May God bless you and just know you are not alone ↑ |
| Name: Cindy | Date: Dec 26th, 2007 7:17 PM |
| I know how you feel. I lost my daughter due to medical malpractice almost 6 years ago now and it hurts everyday ↑ |
| Name: KathyK | Date: Dec 27th, 2007 2:14 PM |
Mary,
How was your holiday? I understand that it might have been hard as every chirstmas since we lost our daughter 10 years ago is not the same. We miss her today as much as we did when we first lost her and think of her all the time. We try to do something special to remember her every year on her birthday and the anniversary of her death. You can never forget your baby and you won't. Remember that you have people here who understand what you are going through.
I hope you have a good new year and that it will bring you some peace and happiness. ↑ |
| Name: Mary Kline | Date: Dec 28th, 2007 1:49 AM |
| Hi, this has been a very hard week. My sons birthday was on December 22nd . He would have been 1 year old.We did take some balloons out to his grave and released them. We also put flowers on his grave. On the 29th it will be one year that we lost him. I miss him so much. The pain that I am feeling is so very deep. My life will never be the same without him. I am so angry with my Dr. She put me on blood thinners at 8 weeks pregnant. She told me that I had a blood clotting problem. My son became growth restricted at 19 1/2 weeks. I was told that it was a chromasone problem or a placenta problem. My baby was not growing right so they put me in the hospital after two months of complete bed rest. My son went into stress on Dec 22nd 2006. They had to deliever him by emergency c section. I had to be intabated fully awake because my blood was to thin to get an epidural so I missed out on my sons birth. I also lost alot of blood and had to get tranfussed.The first day of my sons life I missed out on because of the amount of blood loss they would not let me go to the nicu to see him. I asked the dr. every day of my sons life about his chromasone test. They kept telling me that the results had not come back yet. My son looked perfect. Two days after we lost him I called John Hopkins and asked them for the results. They told me that my placenta autopsy came back normal and the chromasone test got lost. I am stuggling through this not only the loss of my child I also feel that I was missdignosed and if I had not taken the blood thinners my son would be with me today. John Hopkins did some blood work on me as soon as I got to the hospital and I was told that I did not have this blood clotting problem. I was put on blood thinners for nothing. I will blame my dr. for my sons death for the reast of my life. Please say some prayers for me for the 29th. I know that this is going to be a very hard day for me. ↑ |
| Name: Mary Kline | Date: Dec 28th, 2007 1:58 AM |
| KathyK My email is [email protected] if you want to chat ↑ |
| Name: Barbara | Date: Dec 30th, 2007 10:54 PM |
| My first son was born July 17, 1978 and died July 19, 1978. He was born at 7 months ( as were my 4 adult children); my first living child is 25 and fortunately healthy; next I had twin girls: one has Hashimotos disease (hypothyroidism: no big deal if she can remember to take her pill each morning! 22 years old) The first born twin is another story. She has allergic asthmaticus and even had the nerve to stop breathing on me once when she was 6 years old. She improved with her respiratory issues (2 weeks in the ICU at least 4 times a year for about 4 or 5 years..as a nurse I knew better than to leave their side during hospitalizations so it was never easy) I would look at the child next to her on chemo and that day I realized how lucky I was for her to still be alive. We want them no matter what their problems are or may be; good moms (like you) love them THAT much; never let anyone mistake your hope and love for selfishness or denial...those feelings are their problems. My last born has cerebral palsy/seizure disorder and no hope for any real future. My older children received the gift of knowing that to get up and get a drink is a gift and they don't hesitate to help others. I cried for 4 years until my oldest son was born. It's OK to cry and show you have a heart. I supervise group homes now of children whose parents either don't want to care for them or are not mentally capable of raising children. I came to the conclusion that I cannot control what my baby's fate will be when others will feed him and change his diapers, as he's at the mercy of the kindness of others when I am no longer here to do it. Hold on as best you can because a good friend told me , we never know what comes with tomorrows sunrise. I just know my son needs people with hearts like you to exist in the world so he has some chance of getting even half way decent care. (I call the birth of a disabled child a perpetual state of the greiving process; it's supposed to have stages and then closure. The birth of a disabled child is no different than the death of a child...the pain of the loss; of the hopes and dreams we have for our babies that we are forced to face will never be are valid reasons for our grief. My pain of the loss of my first was diminished when my son was born, and all of my children have benefitted from the fact that I knew how priceless their life is to me. (First living (but second born son) is spoiled rotten, but has a heart of gold. You can have a child either by birth or by adoption as once they are yours...THEY ARE YOURS!! I am not a "church" type, but I do pray for you to find some peace and a healthy child I do pray for you to have (and really soon as misery loves company!!) A sense of humor keeps me going!! ↑ |
| Name: Mary Kline | Date: Dec 31st, 2007 3:20 AM |
| Thanks for shareing your story with me. I am very sorry for your loss. I do have three other children. David was my last child. We have decided not to have anymore children. We are afraid that we may loose another baby. ↑ |
| Name: Amanda | Date: Feb 16th, 2008 7:29 AM |
| My daughter morgan was born at 24 wks with a tumor that weighed more than she did. she fought her little heart out for 5 days. i miss her so much and dont know what to do. ↑ |
| Name: kimdaffeh | Date: Feb 28th, 2008 12:36 PM |
| hi my name is kim and i just lost my beautiful daughter akira on the 14 jan 08 i too am really struggling to come to terms with the fact she is gone she was only 2 ↑ |
| Name: stella zarriello | Date: Mar 10th, 2008 12:58 AM |
| my son Kyle was born stillborn on april 28th 1995, i was 25 weeks pregnant...spring is here, and another year passing that i havent had him in my arms.......the spring air, the birds chirping, the flowers in bloom,..all reming me of him, and bring me back to the day i met him and had to say hello and goodbye...ill never forget the blue sky and fresh air that hit me in the face when i walked out of the hospital 8 hrs after giving birth to my precious son.......it was all so surreal....kyle has an older sister chelsea, who will be 16, and a little sister Brielle who is 11......we all miss him each and every single day of our lives....all though Brielle has never met her big brother, she feels as though she knows him..and talks about him often..i know he lives though her, and is with us every moment.......and someday, one day we will all be together again..... ↑ |
| Name: Mary Kline | Date: Mar 10th, 2008 4:07 AM |
| My son went to heaven 14 months ago. The pain is very deep still. I will always miss him and love him forever. I still have a hard time looking at other babies that would be his age. I wonder if I will ever feel happy again. We have three children and I love them dearly. My life will never be the same again without my precious son. I think about him all the time from the time I get up in the morning untill I go to sleep at night. Does anyone know if this pain will ever ease up? ↑ |
| Name: Jen | Date: Sep 2nd, 2008 8:36 AM |
| look. I know that I was blessed considering your tragedy and I am truly sorry for you loss. I lost my son when he was 5 weeks old and it has only been 2 months. I can't stop thinking about him and all I want to do is be with him. ↑ |
| Name: jenny | Date: Mar 20th, 2009 1:36 AM |
| hello i read ur message and i too have lost an infant last thursday. he was 22 weeks and only lived a few minutes or so. he struggled to hang on but didnt make it. i never prayed so hard in my life. my heart is constantly aching me and feel like ill never get my mnd in the right place. ↑ |
| Name: Mellyssa Egan | Date: Mar 21st, 2009 1:04 AM |
| We lost one of our infant twins almost a month ago...it will be a month on the 25th of March. He was 6 months old. ↑ |
| Name: CJW | Date: Apr 7th, 2009 6:21 AM |
| My wife and I just recently loss our identical twin girls on St. Patrick's day. They came out stillborn at 30 weeks from TTTS. Their Names are Destiny and Vanessa. They will always be with us as our beautiful little angels. We will miss them untill we se them in the after-life. ↑ |
| Name: Melindamclain | Date: May 1st, 2009 4:13 AM |
| We lost our little baby two hours after birth 17 weeks ago and I still have no period! Any advice anyone? ↑ |
| Name: sidona | Date: Jul 9th, 2009 3:26 AM |
| I just lost a baby also. she live 5 day. She died of hydranancephaly . It has been only 4 months, I feel i am doing fine but I dont think that i went through all the grieving that i need too. ↑ |
| Name: Dymond | Date: Jul 17th, 2009 7:18 AM |
| I lost my precious Ryan after delivering him at 23 weeks. He lived for about 45 minutes after I delivered him. I have been running around trying to busy myself for the last two months so I wouldn't have a lot of time to think about him. Other things have happened though that are weird and I wanted to find out if it's normal. I have had drinks etc and but no longer become intoxicated. My sex drive is horrible but just recently fizzled within the last month. The only thing that makes me not want to die is my soon to befour year old son. I am a teacher and haven't been to work since Ryan passed 4/20/2009. ↑ |
| Name: Emily Lane | Date: Jul 31st, 2009 5:08 PM |
| My beautiful son william was born full term but got sick with group b strep meningitis at five and a half weeks. My husband and I decided to take him off of life support at seven and half weeks. He never even saw his two months. He passed away on January 18, 2009 and to this day the only person that keeps me going is my almost two year old daughter. We have the utmost difficult time with this loss and I dream about him constantly where he is all better and not sick anymore and that makes it even harder to deal with. Although at first the tragedy brought my husband and i closer, now we are back to fighting constantly again and we both know its because we both are under so much stress and tension. However he's grieving one way and I another so neither of us understand the way the other is doing it. There are also many people telling me they know how i feel cuz they lost a grandpa or something and that we should be over this by now. It drives me insane!!!! How do i deal with these insensitive people so I don't get even more stressed out since I am pregnant again and I don't wanna harm this baby??? How can my husband and I get close again so we stop fighting despite everything?? Somebody please help!! thank you! ↑ |
| Name: summerloss | Date: Aug 14th, 2009 9:23 PM |
To Emily Lane, my son just died just over a month ago. The same week, my husband and I immediately began seeing a grief counselor weekly. Her goal seems to be to make sure my husband and I make it through this staying solid as a couple even though we are grieving very differently. This is making a tremendous difference for us. We are able to give each other the space and respect to grieve as we both need to while not growing apart...and we are becoming closer.
If you can find a counselor who specializes in this work I would really recommend this.
I am so sorry for your loss. I wish none of us ever had to go through this. ↑ |
| Name: lina | Date: Sep 5th, 2009 2:28 PM |
| Name: lina | Date: Sep 5th, 2009 2:29 PM |
| slt cava moi jai 12 stp appeller moi ↑ |
| Name: angie | Date: Oct 3rd, 2009 1:36 AM |
| i lost my 5 week old daughter 8 weeks ago and i am afraid i will never be the same she is all i think about and i also have 4 other children ↑ |
| Name: Michelle | Date: Nov 15th, 2009 4:09 PM |
| I am so sorry for your loss and yes, I understand. My son was born at 30 weeks and lived for 39 minutes. It all happen so fast for me, I cannot imagine if he lived 7 days and hen we lost him. I found it to be a very lonley experience for myself and my husband. My son Chase's birthday is in a week but to me it feels like yesterday. I think about him everyday as well. I left his room set up until 2 weeks ago. My husband and I put all his things away. People use words like "closure" and "moving on" but I don't know if I beleive in any of those things.I would love to chat with you anytime you need to. All of our situations are different but maybe we can help each other. ↑ |
| Name: denise04 | Date: Nov 20th, 2009 11:34 PM |
| i lost a duaghter i can talk to you email me im denise [email protected] ↑ |
| Name: Katherine | Date: Dec 5th, 2009 3:47 PM |
| I too lost my baby boy. August 20 2009. I am struggling to get thruough each day. Would love to chat with you. My baby was diagnosed with Potters Syndrome at 23 weeks pregnant. I was induced at 25 weeks. He was 1lb7oz and lived for only a minute as he had no development of his lungs or kidneys. We named him Brighton and he was fully formed and beautiful tiny little angel. Today was his due date and I am struggling more than ever, it just keeps coming back and hitting you as soon as you think you are starting to see some happiness in life u remember he is not there to see it. I have two other boys 6yo and 3yo they are the only thing that has kept me alive these last few months. Christmas will be hard too. My love and thoughts are with you all, I have read all the posted stories and cried some more for your loss as well as my own. I can be e-mailed at [email protected] ↑ |
| Name: Liz | Date: Dec 10th, 2009 3:49 AM |
I lost my grand-daughter, LillyJayne, 3 weeks ago at 39 weeks 6 days..why couldn't we have made it another day??!! My daughter Kait is just 21, and this baby was the world to
her...how do we move on? I want to love my God, but it is so hard ↑ |
| Name: Connorsmom | Date: Dec 20th, 2009 9:20 PM |
| I lost my infant son Connor to stillborn. It was the worst day of my life when the doctors came in and told me they couldnt detect a heartbeat.... I just stared at her and couldnt belive what i was hearing. My husband and I were allowed to spend 24 hours with Connor at the hosptial which is 24 hours in my life that I will cherish forever. Then at Connor's funeral I was able to say good bye to him and spend a little time with him. But now I miss him with everything I have. All I do is think of him every min of the day. I dont want to hear people tell me that god had plans for him cause I think god let me down. Connor didnt deserve to die he wanted to meet his mommy and daddy, voices he heard for the whole nine months. Connor was stillborn at 39 weeks. Its horrible when ur told ur little bundle of joy has passed away. I have gone in his nursery a couple of times but not for long. I had a bag packed for him with little outfits and blanket and diapers and all the stuff that u pack for the baby for the original hosptial stay. god has let me down but my Connor muffin is in heaven with his grandmother who passed away from lung cancer in august 2009 and Connor passed away from stillborn on november 25th 2009. so i know his grandmother was waiting for him when he came to heaven. I Love u so much and miss u lots. ↑ |
| Name: JESSICA HARRELL | Date: Feb 26th, 2010 11:21 PM |
| HELLO I AM NEW 2 THIS I AM LOOKING 4 SUPPORT AND WAYS TO HELP ME MOVE ON FROM A UNEXPECTED TRAGEDY MY SECOND CHILD PASSED OF SIDS IN JUNE OF O9 IT IS STILL HORRIBLY PAINFUL FOR ME AND FOR ME TIME DOESNT MAKE IT ANY EASIER I RELIVE IT EVERDAY AND DENY IT UNTIL I GO TO THE CEMETARY WERE IT BECOMES REALITY BECAUSE I SEE HIS HEAD STONE SIT AND DO NOTHING BUT CRY AND APOLOGIZE OVER AND OVER TO HIM BECAUSE I LET HIM DOWN IT IS SO HARD I HAD MY FIRST CHILD THEN 2 MISCARRIAGES AND THEN HIM A 30 WEEKS AND HE PASSED AT 3 MTHS AND WHAT MAKES IT EVEN HARDER IS I HAD MY TUBES TIED AFTER HIM SO PLEASE HELP. ↑ |
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