Hi everyone

A place for those bereaved to receive and offer support
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Re: Hi everyone

Postby wooleybear » Tue Sep 18, 2012 09:19 am

I understand your pain even though I didn't go through the whole NICU. I started swelling so bad a little after 3 months. I kept asking my doctor, when is this not normal? I wish I would of showed him a picture of what I looked like before I got pregnant so he could of seen how swollen my face was. I actually switched to him around 3 months, because my other doctor had such horrible bedside manner. Again, it was my first pregnancy, I knew nothing, you would think doctors would be a little more sympathetic to this. I hated feeling like the crazy pregnant woman when I know my body best and I know when something doesn't feel right. Well back to the swelling, I was finally crying in his office, and he asked me if I was depressed and If I should see a therapist. I said no! Im in pain! I can't walk my feet hurt so bad. I also had carpal tunnel in my hands and they were swollen too. I did reflexology, went and got massages, and went on brown rice diet for dinner for 2 weeks and the swelling started to subside. However, my bp and urine were normal all the time. I believe if I was on bedrest I would of had an ok pregnancy too. I had an ultra sound at about 6 months because I told the doctor I was feeling her kick less, he said heart looks great, fluid looks great. But then the movements got less and less. I am a teacher and just thought that the moving around was less cause I was on my feet all day. Then the headaches came which I thought were sinus infections, but they weren't, it was another sign of pre e. But back when I was so swollen, and I gained 20 lbs in month, that should of been a clue. What I don't understand, is why we have to wait for the bp to not be normal. From everyone on here it seems that the bp can spike at anytime and then go back down. So isn't it logical that when you go to the doc the bp could be down. I wish he would have told me to get a bp cuff after the weight gain and tell me to pay careful attention to it. I might of caught it and I believe I was getting some of the symptoms down with the diet and reflexology, that bed rest could of helped. Because weeks later, I ended up developing an infection which ultimately killed my sweet Soleil. My placenta was week from the Pre e, thus letting the infection penetrate to my baby.

everyday it feels like a nightmare, it still doesn't feel real. I understand your pain and then to go through a month of NICU on top of that, must of been horrifying. I think you can stop blaming yourself, I know it so hard to do that. I still catch myself doing that too. I wish you the best and hope you hold strong, which it sounds like you are doing.

Jackie R
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Hi everyone

Postby Jackie R » Mon Sep 17, 2012 09:33 pm

Hi everyone..I havent posted in this group for a while because Ive been trying so hard to get my life together between moving, graduating Grad school, being pregnant with my 2nd daughter Milania.

Here is a recap to my story since we have found out a lot since Mia passed : On November 18 2010 I gave birth to our first born, our beautiful precious Mia at 29 weeks & 3 days due to severe preeclampsia that I truly believe the ob gyn neglected my care. I was a first time mother and when I felt swollen and weird he told me i was fine & i was being paranoid. Other doctors did tell me that signs were there that I was devloping preeclampsia and that bedrest couldve prolonged my pregnancy. Ive spoken to many women in which when diagnosed with preeclampsia at its beginning stage and placed on bedrest they do have successfully deliver a healthy baby. Still I cant believe and blame myself everyday because the signs were there when preeclampsia was mild and just started cooking in me. My ob gyn wasnt even checking my bp for a whole month and I didnt know how important it was because I had no idea what PE was!!! He was so highly recommended that I trusted him. More or less at the hospital my blood pressure was jumping but I remember the nurse telling me that it stabilized. Then some other doctor on my ob gyn team said my baby was dying and they have to take her out immediately...i went into panic & didnt think to argue. Mia thrived and was doing so well for almost a month. My husband & i were in the NICU everyday and they were preparing us for taking her home since she was breathing on her own and doing very well. A week before Mia developed NEC she started to have increased Apnea & bradycardia episodes..I questioned the NICU..they told me this was normal & common. During one of the mornings that I was there I thought Mia was lethargic and something seemed off. The drs reassured me that she was fine. That evening they found blood in her stool and again the Dr said not to worry (I didnt know anything much about NEC at the time eventhough i read about it & when I asked the drs they told me i dont have to worry about it). Within 24 hrs Mia had swollen up, all black & blues, distended stomach, spitting up a cup full of green bile...when i saw her like this I was in shock, started to cry & almost fainted. My precious baby was laying there helpless & appeared to be in shock. I asked the dr why her eyes looked liked they were bleeding & he was scared to answer me. He said im sorry i was just notified at 7 am...the surgeon came in and did a penrose drain. I remember sitting in the other room waiting for the surgery to be complete because they werent allowing anyone in and I was pumping more milk for Mia because I had to think positive & be strong for Mia & all of a sudden I saw a nurse running with a mop towards Mia's room. I threw the breast pumps and ran after her & yelled to my mom that Mia is bleeding to death...they didnt let me in. Everything happened so quickly and her blood pressure started to go down. Drs were doing chest compressions on her. All of a sudden the drs put 3 chairs around Mia's incubator for me, my husband, & my mom...wrapped her up in a blanket, unhooked some wires, placed her in my arms & said Im sorry. She passed in my arms from a cardiopulmonary arrest according to the death certificate. Everything happened so quick that all I knew was to tell Mia how much I love her as I held her in my arms & she closed her eyes. My soul died at that exact moment & im never the same. I never heard my mom cry as loud as she was crying at that moment..my husband who doesnt express his feelings just put his face in his arms and cried like a baby. I looked around the room and saw the drs. & nurses crying. Mia was so feisty, so beautiful, so strong...the drs told us she was doing the best out of her unit and that she would go to a step down unit 2 days before how could this happen?!! It was so hard to get her medical records from the hospital but when I did i studied page by page, contacted other drs...we were told that there was medical malpractice. Mia was showing signs of feeding intolerance a week before which they never told us. This is when she had increased A's & B's but they still increased her feeds. That time when blood was found in her stool they shouldve been pumping out her tummy and consulting with a surgeon instead of waiting the next day. We also found out that Mia was fed her own aspirates-is this normal? The X-rays confirmed free air in bowels way before why did they wait so long to interact & not telling us?!! Mia's bowels perforated & ruptured..she had DIC (disseminated intravascular coagulation-bleeding thru out her whole body) causing her to go septic. The surgeon noted in his findings that Mia had ascites & abscess in her bowels but he wasnt sure that it was NEC. I dont know if im being naive but why did they unhook her from the wires & place her in my arms & said Im sorry-maybe she wouldve turned around like so many success stories that I heard. To top that off, in the medical records it sayd the nurse fed her formula right before or around the time they found blood in her stool....I was giving her my breast milk exclusively. I found all of this out only in Mia's medical records. I was there everyday & when I asked the nurses to see Mia's charts they replied to me that Im there the most of any NICU moms & i know everything on a daily basis. I tried to be nice because the precious life of my daughter was in their hands. We brought them cookies & cakes every week. *** I blame myself everyday...I lost trust in drs/nurses. I wish I wouldve threatened them, yelled at them, etc. & maybe Mia would be alive today...it kills me that Mia went thru so much pain and I her mommy didnt protect her & save her. I thought Drs/nurses including my ob gyn were knowledgeable & I trusted them and by doing this my daughter suffered and died. I miss her & love her more than words can express ♥

I now have a 2nd little precious girl Milania who is 5 months and I try so hard to be strong and be the best mommy to Milania but, there isn't a day or a second in my life that my heart isn't breaking and missing Mia. I blame myself everyday of my life that I wasn't able to save Mia from horrible medical malpractice...after all I'm her mommy and I should've been able to protect my babies from everything. I wish G-d would've taken me instead. This is the worst pain to live without one of your children an yet try to keep it strong for your other child. I'm 29 yo but have a grave next to my Mia already. I wasn't supposed to be buying a grave at this age, I was supposed to be buying crib, clothes, toys. The holidays makes it so much more harder. Actually, truth is no matter how hard I try to be strong everyday is hard and unbearable because no matter how much I love and adore my baby Milania I'm always missing Mia and thinking how one of my kids is always missing and I don't know how I can live with such a broken heart. It's been almost 2 years that Mia passed and it feels like the pain of losing her is getting worse. I know I will never heal but I don't think I will ever cope with losing her either. My worst fear in this life was to lose a parent and yet I lost my first born baby and i love my kids and parents beyond any words describable but losing a child-that isn't supposed to happen...we dont fear that because its not supposed to happen like that...life doesnt work that way....losing a child is the worst grief, self-guilt and heartache that words can not explain and I do not know how to cope. A huge part of my soul, heart and future has died the day Mia passed in my arms. The only thing that keeps me going is the love for my other daughter and my parents can't experience the pain of losing a daughter like I did. It's soooooooo hard and I'm so tired of being in so much pain. Everyday is a struggle to keep my marriage going strong, keeping my sanity, being a good daughter, and more importantly being the best mommy to Milania because I hate myself and blame myself for Mia's death. I know that often PE hits out of nowhere but with me it developed and then with Mia there was clearly negligence in her care and I feel responsible for not protecting her. I wonder what in the world did I or my baby do to deserve this....I have always been a good caring person that always tried to help others. Im so lost & heartbroken and need to get it together for the sake of Milania <3
me (29) hubby (32)

proud Mommy to our beautiful & precious angel Mia-"Forever Loved, Always Missed, Never Forgotten"
born on Nov. 18, 2010 (29w3d) due to severe pre-e and IUGR, became an angel on 12/14/2010 due to hospital negligence in NICU-hospital acquired infection.

"If love could have saved you, you would have lived forever my sweet precious Mia"

proud Mommy to Milania born on April 3, 2012 at 37 weeks PE free-on LDA, Lovenox, Vitamin D, Calcium & Bedrest
Thank You my sweet precious Mia for safely placing your baby sister into our arms <3

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