Archive for August, 2012

Baby Mia’s Story

August 11th, 2012 by Jackie

LONG STORY:
Hi everyone..I’m new to the group. 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. He was so highly recommended that I trusted him. I had no idea what preeclampsia even was at the time. 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 & didn’t 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 didn’t know anything much about NEC at the time even though i read about it & when I asked the drs they told me i don’t 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 weren’t 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 didn’t 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 I’m 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 should’ve 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 wasn’t sure that it was NEC. I don’t know if i’m being naive but why did they unhook her from the wires & place her in my arms & said I am sorry-maybe she would’ve turned around like so many success stories that I heard. To top that off, in the medical records it said 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 I’m 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. Were proceeding with a lawsuit not to get any financial gain because Mia is priceless & no $$$$$ will ever heal my broken heart but I want to expose these  Drs so it doesn’t happen to any other family. I blame myself everyday…I lost trust in drs/nurses. I wish I would’ve 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 didn’t 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.
♥RIP my beautiful angel Mia 11/18/10 11:29 pm-12/14/10 2:48 pm

If love could save you, you would live forever. I wish it was me who died & you would’ve lived my precious baby

Claire a survivor in her Senior Year at High School

August 6th, 2012 by Claire Vs. NEC

I found this website on Google trying to find out more about NEC. Though I am not a parent with a child who had/has NEC, I am the child that had NEC. This is my story.

Mom hadn’t been feeling well, one week during her pregnancy, so she went to her doctor to check if everything was okay. Turns out she wasn’t okay, she had been diagnosed with Pre-eclampsia. Mom was 29 weeks. I was delivered early the next morning.

I was born at 7:30 a.m. on May 15 at 2 lbs 14 oz.

I was put in NICU for safe measure and for the first few days I was fine. Soon though, the doctors noticed odd behaviors in my abdomen area. And later I was diagnosed with NEC. I was quickly stuck with I.V.’s, breathing tubes, and many other devices to help keep me alive without resorting to surgery.

I had a large perforation in my small intestines and it was then immediately clear the medical treatment wouldn’t cut it.

On my 10th day of life I was taken into surgery and had a large amount of my small intestine removed and given a illiostomy. A month and half later I had the reverse.

This year, I am in my senior year of high school and have had no problems since then. The only reminder I even had NEC, is the illiostomy scar laying innocently across my abdomen.

I posted this to give hope to the parents of a child with NEC. Hope that their child will grow. Be healthy. Live to see their 20th birthday.

My name is Claire.

I fought NEC.

And won.

Baby boy Triplet Giovanni’s Survival Story

August 6th, 2012 by Domenic

Our little boy Giovanni was born 31/5 days he is one of Triplets. Our story is a story of survival, all the babies were born healthy and at about 33 weeks we got a phone call that Giovanni had bleeding of the bowel. Previous to this a week before we had two of our boys with bleeding of the bowel and they put it down to intolerance to fortified milk. They both recovered from this and Giovanni had been given antibiotics to treat it. This time was different though and Giovanni was deteriorating rapidly. He was eventually on every survival machine and was riding the vent for 3 days without any movement. All his intestines were inflamed excessively swollen and were ready to rupture. We could not believe what was happening to our Son and all I could think was put a Non Correre magnet (a Catholic symbol I’ve had with me through the pregnancy) in his crib to help him get through this. He had blood transfusions, plasmons and after two weeks without any feeding we started to see an improvement. Within 3 1/2 weeks he was back to our healthy baby again but this time a little more frantic frightened like. Our next hurdle was a possible stricture and operation within 5 weeks which he didn’t get. There are so many sad stories but we wanted to share our story that there is hope and that it isn’t always a fatal illness. Our baby is now 9 months and going strong very active and showing no signs of what he went through in NICU. For all you parents going through this best wishes to your baby and may God bless your child with a speedy recovery