Baby Elijah’s Story

July 29th, 2013 by Amy

It was a dream come true after 11 years trying to have a child, the news I was pregnant lifted me into the air and I dreamed about if it was a girl a boy..did he or she look like me or Rey…what name I would call him or her. I quickly made appointments to make sure the progress was going well. Everything did go well…to every appointment until 24 weeks into my pregnancy and my water broke. Sadly I thought, well maybe my baby is so eager to meet us he couldnt wait… I was rushed to Maine Medical in Portland where they tried to delay the arrival of my son by administering Mag. 3 days later I delivered him. A little boy we named Elijah. He was beautiful a full head of hair weighing 1 pound 12 ounces. Dr’s shared the statistics of premature babies at that gestational age but I told them he’ll be a fighter and would beat the odds against him. The first weeks were going ok, they tell you to get ready for the roller coaster and I thought it was odd as I always loved roller coasters. This was a ride I would not wish on anyone. He developed complications in his lungs that the dr’s stated he may just not be able to fight, oxygen up too 100%, then steriods. It was a tough decision but it was that or he just may not make it. 2 weeks laters our little fighter was beating the odds with his oxygen on 20%-30%..what a little fighter. With amazement from all our little son was now moved to the nippv. It was a first for this hospital. He was doing great..they started increasing his feeds and introduced fortifier for extra calories. Everything was going great.. he was starting to gain weight. In fact, I started to be able to hold my son. What an odd thing to wait for.. to HOLD YOUR child.. It comes without saying for most. The next day, I got the call no one wants to hear.. your son stomach has dicended and he is not acting himself. With panic we flew to the hospital. His stomach, bloated and bruised. With Xrays done, some dr.s thought it may not be NEC as xrays were not showing this. Antibotics were admin. TPN admin. no more feedings..It was a wait, the next day the bruising went away somewhat..then they decided to do an ultasound and when they had a team review it was confirmed it was in fact, NEC. My heart dropped because I spent hours reading about this online. I would read insipring stories of preemies overcoming this and be very hopeful that my son too would overcome. Sadly, he did not overcome this. The surgeon said if a little part of his intestine was infected he could surgically remove and possibly have a bag to get his secretions, etc. So, he told us to give him 1-2 hours. 45 min later I get the call to return to the hospital. We walked in to hear, Im sorry. The intestines are infected and we will need to remove your sons breathing tubes and say goodbye to him. I was/still am in disbelief. HOW did this happen? Was it me, the formula? what is going on. It breaks me to pieces that I no longer have my son Elijah. He was my everything and now, I feel I am left wondering WHY? I wish my sons outcome was different but sadly he must have been so special that he needed to go back to heaven.

8 responses to “Baby Elijah’s Story”

  1. TIFFANY says:

    HI. I AM SO VERY SORRY ABOUT YOUR LOSS. I LOST MY SON TO NEC IN DECEMBER AND I KNOW THE PAIN THAT YOU ARE FEELING. I KNOW THAT THERE ARE NO WORDS THAT I CANSAY THAT WILL MAKE YOU FEEL BETTER, BUT JUST KNOW THAT YOUR BABY IS NOT ALONE. JUST CONTINUE TO LOVE AND REMEMEBER HIM AND IN TIME YOU WILL BE ABLE TO FEEL THAT HEAVY WEIGHT LIFTED FROM YOUR HEART. I DON’T KNOW IF YOU ARE A BELIEVER IN GOD, BUT LEANING ON HIM AND HIS WORD HAS HELPED ME TREMENDOUSLY. PLEASE STAY STRONG.

  2. elijahs mom says:

    Elijah ..I miss you so much but today ..is not any different from any other day. I want to hold you…

  3. Nilsa says:

    I am so sorry about your loss. I know that he is in heaven with all the other angels.

  4. Nia says:

    God bless you, my baby is in heaven with Elijah, she had NEC 12/9- 12/23 2013
    Rest in heaven Kayla & Elijah

  5. Your story truly brought me to tears, what you descibed is the same thing that happened to my Elijah. He was doing great gaining weight and they were increasing his feedings daily. He was only on breast milk and they to were fortifying with extra calories and nutrients. He overcame my obstacles and was proving the Dr’s and nurses wrong, he was a fighter. The day after Christmas he developed nec and three days later he was gone. I feel as if I’m going crazy ,as me and my husband and even children got to bond with him in the nicu, I still just can’t get over it. I’m sorry for the loss of your Elijah. Thank you for sharing your story .

  6. Janet sulley says:

    Amy
    Thank you for sharing your story. We had our little Westin on Dec 30 and he did great till jan 11 then went down hill 2 surgeries later we had to tell him good bye… My other children only got to meet him once and then got to say good bye. I ask so many questions why why why but all I can do is pray for healing. It’s only been a week but I don’t know how to get back to regular everyday life. I’m glad I have found that others have endured the same as us. Not that I want anyone to very go through till but it helps. thank you. Janet

  7. Amy says:

    A few months have passed. Elijah would be 7 months. My days will never be the same way I envisioned. Elijah sitting on my lap as I read him stories, giving him walks in the stroller, hearing his first words, his laugh. There are so many times I wonder if something was missed, should I have spoken up, asked more questions. It is difficult to read so many peoples stories of loss to this disease yet it seems we are to take the diagnosis and accept that their is not more research for this. I am constantly checking sites but it seems so many families are sharing this heart wrenching experience yet they say it only impacts 5% of premature babies. I can’t help but feel this urge to blame something or someone but I get this guilt about my feelings. Life has to go on they say but nothing is the same, it hurts to see children on the news abused, neglected mean while all I wanted to do was hug him, smell him, hold him. I was recommended this book “when bad things happen to good people” I have tried to ration all the reasons along with reading and still continually find a empty smile, a missing cry from the room across the hall. I am grateful to those who wrote a reply and I know what all of you are going through. It doesn’t make it any better to hear he’s /she is in a better place because to us the best place would have been in our arms. I am not sure your beliefs but I found myself questioning why this could of happened. I was told that it is a test of your strength, if I could rewind time back on that NICU I would have been weak just to bring home Elijah. I don’t know what gets me through each day other than thinking he has to be near me if not physically. I can only hope one day to meet him again but until then I would love to connect with you because we may not discover a cure or preventive actions to NEC I can only hope we are brought together to remember our children with lives cut to short here on this planet.

  8. Shruti says:

    I went through the same trauma and my son died too of NEC on 25jan . I know how you feel esp when our babies were doing so well this unexpected happend

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