Devastated and heartbroken

[claricemaala]

Jackie,
I am so sorry for your loss. There is nothing we could have really done. You have done your best and do not blame yourself. My son also died of NEC in 2/2010. I just celebrated his anniversary . My son was born 31 weeks and 1 day and he was healthy with APGAR of 9/9. Did very well. He was even transferred to NICU stedown at 8 day and was perfect and beautiful the morning on 2/8 but went downhill on 2/8 after I received aphone call stating that they "think he has blood in stool". He went downhill overnight and died on my arms 2/9 with fulminant NEC. No surgery was done because he was unstable almost 4 hrs after the diagnosis of NEC.
I blamed myself for sometime for what happned. Also blamed the doctors and actually reviewed all his medical record. I was a nurse practitioner at the facility where my son died. There was no indication that he was sick. All his labs were beautiful the morning off. I guess I was looking for somnething that I can pinpoint to blame but I really did not find any. I even blamed myself for not giving him breastmilk daily . At that time they were alternating breastmilk with formula.
I blamed myself for everything. Rememner it was not your fault. You did eveything you could do.
Pls be gentle to yourself. PAN me if you need to talk. There is also a little forum in BBC taking about NEC and stories. Hope that might help you.

[Jackie R]

Hi Ladies! Thank you for being so welcoming and understanding. I apologize that it took me a while to respond-my husband saw I was very depressed so he suprised me with a trip to Miami to get out of cold, gloomy NY. I apologize for writing hospital names, etc.. I am now aware of the rules. The weather was good but of course I saw some of my friends that have babies. Even though I am truly grateful for them and love their babies dearly, I was sad because the whole time while I was pregnant with my daughter we were making plans how our children will play together. I am so sorry for your losses and truly respect the strength that you all show. Naturally, being a strong and positive person, I wish one day I will be better. It just seems that theres no light at the end of the tunnel and everyday is a constant struggle. I dont want to commit suicide, but rather want to do anything just to be with my Mia again-even if its for a brief moment.
As much research as Ive been doing, I just dont understand why my doctors didnt attempt to put me on bedrest or even utter the words "high-risk" or "preeclampsia." I was showing signs of abnormal swelling and my baby had SGA and IUGR and they kept telling me that everything was fine. I believed since Im a petite girl that my baby girl was just small since they werent doing anything or telling me anything. Was there anything that couldve been done? Did anyone's doctor give any treatment to try to prolong the pregnancy?? Ugggh, I wish I could turn back the hands of time.....

[Jackie R]

I am so sorry for your loss claricemala. It is a completely devastating and tramuatic experience...one that I dont wish upon anyone. I admire your strength very much. How do I PAN? I am new to this site.

[frogibe]

I'm so very sorry that you had to go through this and that your child had to suffer this terrible disease. Your story is a mirror image to mine. I lost my daughter within a day after her observational surgery. I was also told that she did not have NEC, and on her death certificate it clearly states sepsis and NEC. My heart breaks for you, for I still am grieving the loss of my daughter and I know how hard it is. Be gentle with yourself and spend as much time as you can with family and your hubby. If you ever need to talk, I just want to let you know I am here.

[Jackie R]

I am so sorry frogibe for the loss of your beautiful and precious daughter. I am so lost...im trying to research the records and trying to realize what happened. My daugher Mia was fine up until the nurse gave her formula(according to medical records). How dare they ever give formula when I didnt consent to it?! Also, i found out that NEC occurs in clusters...2 babies died in the same room before my Mia but due to privacy reasons I don not know why. Do you think this could have happened bc of the hospital where my daughter was?? I had a gut feeling to transfer Mia to another hospital but, my husband thought I was insane and said our daughter was doing very well...so once again I didnt listen to my gut.

Also, I am now going to all different doctors trying to hav my and Mia's records reviewed. Some Drs say i should not have been delivered-that it was a bad judgement call and that my obgyn who I was going to while I was pregnant didnt monitor me correctly. Also, I just found out today that if I try to have a 2nd baby with my current partner-my husband that the chances of getting PE again are higher. Maybe im not meant to have anymore kids other than Mia eventhough I thought the only way to bring her soul back is to try to have another baby(I started doing research on reincarnation). I used to be such a positive and fun person and now nothing makes me happy. Im forever miserable and I love my Mia and miss her so much!! A day has not went by that I dont cry and wonder why I am alive and my baby is not. I hate my life and I hate feeling this way-why couldnt I and/or my daughter just been monitored better??

[Jackie R]

Btw, my obgyn never ever put on bedrest even when I was swollen like a watermelon and when I asked him if I needed bedrest (this was before I knew anything about PE). Maybe bedrest wouldve kept me preg longer with Mia and my PE would not have supposedly become severe??

[caryn]

Jackie, there's actually no evidence supporting bedrest as a means to delay the onset of preeclampsia or to lessen the severity of it. Bedrest is used, more than anything, as a way to signal to everyone from the patient to the care providers that this is Really Serious.

Preeclampsia is a devastating, brutal, fast disease. I'm so sorry.

[frogibe]

I know that while my daughter was in the NICU that there was at least one other baby with NEC, who I know had surgery due to the colostomy bag that she had. Yes it does come in clusters and they do not know why. It is by far the worst thing that could happen to a preemie in the NICU. Remember that most babies do fine in the NICU. I'm not sure why they said that you have a higher chance with your husband....when the research states that yes you may have a higher chance of it happening again, it is not due to your partner. Have you gone in for testing? If you are considering having more children after Mia I would say you need to check for clotting disorders and make sure you do not have chronic hypertension as well. Then a MFM can meet with you and make a plan as well as give you some statistics on it happening again. I know even with the early onset with me at 27 weeks they have given me a 70% chance of having a normal pregnancy without PE. I do have a history of it in my family and am now chronic hypertensive.
I am so sorry that you are feeling this way. I know how awful it is and it feels as if things will never be normal again. All I can say is for me and I am sure for you healing will happen with time. You will find a new normal and a new sense of who you are. I can honestly say that my daughter's birth and death have not only changed my life but have changed who I am. I have a new normal for me. Do what ever you feel you need to do. Cry when you need to, talk when you need to, and remember being happy when you need to. Do not let anyone tell you that you are not grieving in the right way, everyone heals differently.
I know that going through med records is difficult but I did it as well and it really did help me heal. It doesn't and will never give you the answers you are looking for. In my eyes I will never know why Kelsie was taken from us so soon until I am in heaven with her. I hope that Mia and Kelsie are playing nicely together in heaven and that they will forever be our guardian angels.

[lola1971]

I am so sorry for you loss. I know how you feel...it's like the world just comes crashing down at your feet and you can't even move....My heart longs for my fb daughter every day. All I can say is that it will take time to adjust and use this forum for help and find a way to slowly start healing at your pace and in your way. May peace find you and your husband soon.

[Lee Ann]

Hi Jackie,

You have my deepest sympahthies. I too lost my daughter to NEC and she was almost 3 months old. It's such a devastating loss and sometimes just to indescribable to put into words.....I remember feeling like I didn't want to go on living either. I told my husband that they should have buried me right beside of her. He did not like hearing me say that of course.... I just had to keep thinking what would Olivia have wanted to me do? I guess the thing for me that helped me pick myself back up was that I wanted Olivia to be proud of her mommy. I thought if she could see me now what would she think? So, I went to work everyday, and I went to counseling, I talked about her to people at work and in my church and really just whoever would listen to me. Has it been an easy path? Absolutely not, I still struggle with her death as any parent would with the death of their child. If you are feeling suicidal please voice those concerns to your family/and or your doctor. I think it is imperative for mothers and fathers to go through counseling after such a devasting loss. It's an area we are not familiar with and when we loose a child we are suddenly thrown into a world that quickly feels as though it is spiraling out of control....and we don't necessarily know how to handle our feelings and emotions. Again, my deepest sympathies and do know that you have a good support group here on this forum. A lot of us know what you are going through so please talk to us as often as you need. We will be here for you.