MARCH OF DIMES | MARCH FOR BABIES | NACERSANO

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Akeelah's Mommy

235 Replies

  • lilbird930
    Hello, I am new here and I'm dealing with a loss of a child and a child in nicu. my daughter was stillborn 6 yrs ago and I miss her everyday. Also my micro preemie is currently in the nicu. I am here looking for support from others who can relate and to share my story
  • Hunter and Randi's Mom

    In reply to KJ's MOM:

    Hi KJ's MOM. Welcome to Share. I'm glad you found us. I'm sorry You are facing this decision for Kevin. My son was a 26 weeker, also 1 lb 10 oz. He also has OT, PT and ST and had feeding therapy until a couple of years ago. He also aspirated but we were able to address it by thickening his fluids. I'm sure you will make the right decision for your son, and know that you can get second (and third) opinions until you are comfortable with the advice you recieve. I will be keeping you and Kevin in my thoughts.
    Marissa
  • emmasmommy0515

    In reply to ethan&casey's mom:

    Thank you Erin it is much needed with the disorder she has I appreciate the thoughts
  • emmasmommy0515

    In reply to Hunter and Randi's Mom:

    Thank you Marissa I could sure use them. I know God gave me her for a reason no matter what we go through. We go to our first appointment this coming week please keep us in your prayers.
  • Hunter and Randi's Mom

    In reply to emmasmommy0515:

    Hi Shelby. Welcome to Share! Congratulations on the birth of your daughter Emma Lou! I am keeping you and Emma Lou in my thoughts and hoping that your doctor visits and appointments go well.
    Hugs,
    Marissa
  • ethan&casey's mom

    In reply to emmasmommy0515:

    Hi Shelby, thank you for sharing Emma Lou's story. What a scary time for you and your family. I wish you much strength as you navigate the road ahead.

    erin
  • emmasmommy0515
    Hello Everyone. My name is Shelby my daughter Emma Lou was born at 34 weeks and 1 day. I had preterm labor with her when I was 30 weeks they stopped my labor thank god but spent 12 days in the hospital to make sure my contractions went away. I was working a full time job and going to school while pregnant and nothing had went wrong till then. On May 30th 2015 I went into full labor @ 5:45 pm and went to the ER but wasn't in any pain or anything until around 7 p.m. that night and got my epidural at 9 p.m. I was only in labor and hour and a half and my daughter was born at @ 10:49 pm that night. She had problems breathing when they cleaned her off and checked her weight and everything. I got to hold her for just a couple of minutes and she was took to the NICU unit. I did not get to see my daughter till 2:30 am Sunday morning. She was on oxygen and pulse monitor and blood pressure monitor and iv she was born with an infection. My daughter was off the oxygen within 6 hours of being born and then about 2 days of being born she developed jaundice. Thankfully she was cleared after 2 days of the phototherapy. The iv stayed until the day before she was finally released from the hospital on June 6,2015 while she was in NICU she was diagnosed with Achondroplasia a form of dwarfism. I had a really hard time accepting that my daughter had the disease because I didn't carry the gene and neither did her father or anyone in our family. While in NICU march of dimes was awesome to me and my family while Emma Lou was in there they talked to me and listened to what I was going through and helped me understand that it would be fine and they only thing that would be different would be Emma Lou's height. On July 28.2015 they confirmed the diagnosis of Achondroplasia so know we have a long road of doctors and appointments to make sure that Emma Lou's health is going as it should be.
  • Mai C.

    In reply to lvazquez:

    Thank you Lindsay! I just read your profile....I admire your strength and courage to share your story, you are a very strong woman!
  • lvazquez

    In reply to Mai C.:

    Hello Mai and welcome to Share. Congratulations on your son Aidan! I'm a mom to a 34-weeker too. I'm glad to hear that your son met his NICU goals and came home. I know the NICU is an emotional ride for sure. There are many parents on this site whose kiddos have endured NICU stays. I hope that you can connect more here.

    Lindsay
  • Mai C.
    Hello, my name is Mai. I'm the mom of a 34 weeker, Aidan. We were discharged from the NICU after a very long 5.5 weeks! Lots of ups and downs, and the most emotional and stressful time of our lives, but all worth it! I am here to share my experience with everyone and offer any advice or a kind ear. The March of Dimes was amazing during our NICU stay, and I want to keep in contact. XO
  • lvazquez

    In reply to eburttr:

    Hello and welcome to Share. I am so sorry to read about the loss of your baby girl. From reading your story, it sounds like she was such a fighter and tried to stay with you as long as she could. I hope that you will hold on to the time of togetherness as you remember and honor her. I was in labor as well and didn't know it. I had undiagnosed preeclampsia, a placental abruption, and a blood clot. He was 30 weeks along and was born sleeping.

    There are many on this site who have experienced loss. Many who have been able to conceive rainbow babies with extra care and monitoring steps in place. I hope that you read some of their stories and find more hope and inspiration here. I found this site days after our loss and it's been a helpful tool in my healing journey. I hope that it can do the same for you.

    Sending you warm thoughts and well wishes,

    Lindsay
  • Hunter and Randi's Mom

    In reply to eburttr:

    Welcome to Share. I am so sorry for your loss of your daughter. I am also a loss mom. My daughter was born at 26 weeks and passed away at 3 days old. I also didn't know I was in labor and also don't know whether IC caused the preterm labor or vice versa. I did make it to full term in my second pregnancy with precautions including 17P, a cerclage and bed rest.
    I am glad you found us here. Share is a wonderful place where people understand. I know you will find a lot of support here.
    I will be keeping you in my thoughts.
    Marissa
  • CharlieAllene's mom

    In reply to eburttr:

    Hi,
    Welcome to Share. I'm so sorry for your loss. I'm keeping you in my thoughts.

    Rebecca
  • eburttr
    We lost our daughter after 3 weeks in the NICU. She was born at 24.5 weeks due to Preterm Labor and IC (they are not sure which caused which) and placenta abruption after my contractions got worse and my water broke. She coded when she was born and was resuscitated but had level 3 and 4 brain bleeds and severe brain damage from the traumatic birth. She was such a little fighter but she was just too early. I cherish every moment I got to spend with her and hope that she helped pave the way for a little brother or sister in the future since I would not know about my cervix or preterm labor without her. I was SUPER active during my pregnancy (teaching fitness classes and working out) and I hope that next time 17p shots and staying off my feet will help us carry closer to full term as possible since before my level of activity may have made the IC and contractions worse. I had no idea I was having contractions because I did not know what contractions felt like and had been having them for weeks unknowingly, I thought it was just her moving around.
  • nmiller77

    In reply to Faithangel:

    Hi,
    I am so sorry for your loss. I too am an angel mom and that's exactly what you have to do at first is take it one day at a time. I was existing at one minute at a time when my son first died. We started supporting the March of Dimes as a way for our family to make difference in memory of our son. Hugs to you. Nicki
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