Fighting so hard

[Klemmons]

I am new to this, and I was hoping this will help me cope with losing my daughter. My Zoe passed away on October 31, 2010. She had hydrops fetalis. We found out at 17 weeks pregnant that our baby was very sick. We were referred to Children's Hospital of Philadelphia by the high risk Dr in our area. We were scared and in shock that this was happening. Our first time to CHOP I spent all day getting tests done, MRI of the baby, a full heart study of the baby, and an extensive ultrasound. There was fluid around her heart and lungs, this is called bilateral pleural effusions. We met with a group of 5 Dr's and we were given our options. The only for us was to fight for her life. So, we made trips to Philly 2-3 times a week. Everytime we went down there we got to see our beautiful baby Zoe on ultrasound. We could see her getting sicker and sicker. We got an amnio done because they were looking for the underlining cause why Zoe had this. All the tests from the amnio came back negative. So it was more than likely due to her lymphatic system not developed correctly. Her fluid kept growing and compressing her lungs and heart. The next procedure they did was insert a needle through my stomach and uterus and into Zoe's chest and drained fluid from the right side of her lung. This was done while I was awake with no medications. We went back for our checkup and the fluid was back and she actually started getting fluid around her head, neck, stomach, this is where it turned into hydrops. So I was scheduled for surgery where they would only sedate to the point where I was still able to breath on my own and insert shunts through Zoe's chest. Then another surgery had to be scheduled, this time the other side of her chest. During this surgery they had to go in twice because she was moving so much. Finally after 3 hours of laying there with a rod through my stomach we were finished and that was to be are last surgery. Well during recovery I ended up with internal bleeding from the surgery and almost died, had to get two blood transfusions. And 3 days later we were finally able to go home. At the next couple checkups she was looking great!! Then on October 29th my water broke, first time it ever broke on its own. I was admitted to the hosital and not allowed to get out of bed, they gave ne a toxic dose of magnesium to help keep her in, but on Oct. 31st they had to do an emergency c-section. Our precious Zoe was born weighing 1 lb, 10 oz and lived for 42 minutes!! The reason I wrote all the other details is because we fought for Zoe and she also fought. We did everything to try to save her life, and she didn't make it. She stayed in our hospital room with us until the evening when I had to let her be taken to the funeral home. There were so many family and friends at the hospital and they all got to meet her. It was the most beautiful service. We also have two other children and it is very hard on our 7 year old!! I haven't really talked to anyone about the details in a while so it feels ok writing about it. I am a total mess, I can't get over that she did not make it, I blame my body for not keeping her in longer so her lungs had more time to develop. I am just so sad, I am back to work and trying to stay strong. It is hard and I just want Zoe!! I am still in shock and am paranoid about losing my other two children. I don't know what to do to try to help myself cope better. I see my scars on my stomach everyday, nothing gets easier. Any suggestions or opinions would be greatly appreciated. I just wish things were different. We were prepared for any and all medical issues she was going to have. And she was taken away from us.

[shellyku]

Dear Zoe's Mom - I read your post this morning and my heart breaks for you. How hard this

must have been on you and your family. This website will provide you with caring and

compassionate people who will listen and encourage you through this awful journey

we are all facing. My daughter, Sarah, passed away on August 18, 2010 at the age of 29

from leukemia. Our stories are very different but we have one thing in common: we lost

a child so that puts us on the same journey. Please come here to post as you are able

and you will find many people who can relate to what you are going through. You and

your family will be in my prayers. Peace to you Zoe's Mom.

[ModKonnie]

I am new to this, and I was hoping this will help me cope with losing my daughter. My Zoe passed away on October 31, 2010. She had hydrops fetalis. We found out at 17 weeks pregnant that our baby was very sick. We were referred to Children's Hospital of Philadelphia by the high risk Dr in our area. We were scared and in shock that this was happening. Our first time to CHOP I spent all day getting tests done, MRI of the baby, a full heart study of the baby, and an extensive ultrasound. There was fluid around her heart and lungs, this is called bilateral pleural effusions. We met with a group of 5 Dr's and we were given our options. The only for us was to fight for her life. So, we made trips to Philly 2-3 times a week. Everytime we went down there we got to see our beautiful baby Zoe on ultrasound. We could see her getting sicker and sicker. We got an amnio done because they were looking for the underlining cause why Zoe had this. All the tests from the amnio came back negative. So it was more than likely due to her lymphatic system not developed correctly. Her fluid kept growing and compressing her lungs and heart. The next procedure they did was insert a needle through my stomach and uterus and into Zoe's chest and drained fluid from the right side of her lung. This was done while I was awake with no medications. We went back for our checkup and the fluid was back and she actually started getting fluid around her head, neck, stomach, this is where it turned into hydrops. So I was scheduled for surgery where they would only sedate to the point where I was still able to breath on my own and insert shunts through Zoe's chest. Then another surgery had to be scheduled, this time the other side of her chest. During this surgery they had to go in twice because she was moving so much. Finally after 3 hours of laying there with a rod through my stomach we were finished and that was to be are last surgery. Well during recovery I ended up with internal bleeding from the surgery and almost died, had to get two blood transfusions. And 3 days later we were finally able to go home. At the next couple checkups she was looking great!! Then on October 29th my water broke, first time it ever broke on its own. I was admitted to the hosital and not allowed to get out of bed, they gave ne a toxic dose of magnesium to help keep her in, but on Oct. 31st they had to do an emergency c-section. Our precious Zoe was born weighing 1 lb, 10 oz and lived for 42 minutes!! The reason I wrote all the other details is because we fought for Zoe and she also fought. We did everything to try to save her life, and she didn't make it. She stayed in our hospital room with us until the evening when I had to let her be taken to the funeral home. There were so many family and friends at the hospital and they all got to meet her. It was the most beautiful service. We also have two other children and it is very hard on our 7 year old!! I haven't really talked to anyone about the details in a while so it feels ok writing about it. I am a total mess, I can't get over that she did not make it, I blame my body for not keeping her in longer so her lungs had more time to develop. I am just so sad, I am back to work and trying to stay strong. It is hard and I just want Zoe!! I am still in shock and am paranoid about losing my other two children. I don't know what to do to try to help myself cope better. I see my scars on my stomach everyday, nothing gets easier. Any suggestions or opinions would be greatly appreciated. I just wish things were different. We were prepared for any and all medical issues she was going to have. And she was taken away from us.

Zoe's Mom,

I am very sorry about the loss of your precious Zoe. It must be very difficult, particularly after all that fighting you did to save her. Why God decides to take people when he does is something I guess none of us will ever understand. You have come to the right place here. There are many people in this community who have suffered the loss of a precious child. They will be able to offer you encouragement and support as you travel this difficult path.

My family is currently fighting a similar battle. My sister's first grandchild, London, was born on New Year's Day 14 weeks too early. Her mother went into labor unexpected and unexplainedly and barely made it to the hospital in time to save London's life. From start to finish, she felt a few back pains and by the time she got to the ER, London was trying to come out breech. They did an emergency C-section and started before Jess could be put under anesthesia.

London was 1 lb 11 oz. They rushed her to the NICU in Louisville, KY. She is fighting for her life, but things aren't going so well. She has had grade 3 and possibly grade 4 brain bleeds. She has developed fluid on her brain, she has a hole in her intestines, her lung is swollen and putting pressure on her heart, which has two valves that won't close. They are also worried she has developed an infection somewhere in her body. But she is fighting, and we are praying. London's mommy just turned 18 years old last week, and her daddy (my nephew) is only 19. They are in shock and horror and disbelief.

We are all prepared for any and all medical issues that she is going to have, too, but right now the doctors aren't talking past hour by hour news.

We are here for you,

ModKonnie

[jtvt]

I am so sorry Zoe's mom. please write more. how are you doing now? how are your other children? I found when my son died, (he had two younger brothers at the time), they did quite well. it took one of my sons about a year before he could really feel the pain. We lit a candle every day to honor J. On his birthday and anniversary of his death we had quiet time, time to remember, etc. I always talked about J, throughout the year, so that the boys could talk about him any time they wanted to.

My thoughts and heart are with you,

J.