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You are here: Home / Micro Preemie Mondays / Sharing is Difficult, Loving is Easy: Jordan’s Story

Sharing is Difficult, Loving is Easy: Jordan’s Story

February 18, 2019 By Shann 7 Comments

Sharing is Difficult

Nothing about a complicated pregnancy or NICU stay is easy. From the worry and the heartache to the decisions and the waiting, sharing is hard.

Not only do people want to know what is going on with your baby, but they are constantly asking how you are doing. Most of the time, you don’t know the answers to either of those questions.

Plus, explaining complex medical procedures or bad news when you are already emotional is really hard. It hurts having to relive those moments.

How can they understand if they haven’t experience the NICU themselves?

Sometimes, it seems that sharing the good news and progress is the only thing people want to hear.

Sharing is Important

However, it’s important to share it all. The good, the bad, and all the emotions.

Not only is it a release for the parent, but it helps others better understand what NICU life is like. It can also be a beacon of hope to another person going through a similar situation. It is exactly why I started an online journal, which in turn became this blog.

When I first started my journal, I only shared with friends and family. I also only shared the facts. About 50 days into our journey, I hit a wall and need to share more. I needed to get my emotions out there, and I needed support.

I then realized I wasn’t the only one, and started my blog.

While it took her longer than 50 days, Sara wants to share her story too.

I knew early on that I wanted to reach out and help other micro preemie moms, but it took a lot of healing and forgiveness for me to feel ready to talk about it.

Today, on her amazing boy’s 3rd birthday, she is ready, and I’m so happy to be able to help her share.

sharing is hard, but so important when it comes to Premature Birth and NICU Awareness.

Jordan

1. Tell us about your baby.

My son Jordan was born February 18th, 2016 at 25 weeks and 1 day, weighing 1lb and 4 oz (588 grams).
sharing

2. How long was your NICU stay? What was the hardest part?

He spent 138 days total in the NICU.  The first 12 days were at the hospital where he was born, and as his PDA got larger, we transferred him via ambulance to a larger hospital with a level III NICU.  The night of the transfer he was put on the oscillating ventilator at 100% oxygen and the highest support settings, I was very scared he wouldn’t make it.
The hardest part was feeling helpless and guilty when his condition would get worse. He had CPR, 8 blood transfusions, a CMV infection, 4 rounds of dexamethasone and was intubated for 71 days.  We came home with an NG tube but ended up having a G-tube surgically placed three months later.
sharing
NICU graduate!

3.Do you know what caused your premature birth?

Jordan is my only child and this was my first pregnancy. I was hospitalized at 24+2 weeks for preeclampsia.  I spent 6 days being monitored and was treated with magnesium sulfate to prevent seizures, and steroids to mature his lungs.  Eventually my liver enzymes skyrocketed, my platelets fell and my preeclampsia turned into HELLP Syndrome. His heart rate started dropping and he was delivered via emergency c-section. I’m so grateful to the doctors and nurses for letting me stay pregnant as long as possible.

4.How are you and your baby doing now?

Jordan is an incredibly strong, curious and joyful 3-year-old boy today.  The strength and courage he showed us in the NICU is still a major part of his personality today.  He has some mild speech and feeding delays. We still have the G-tube for medicine and occasional feeds when he’s sick, but he has progressed beautifully with oral eating. He receives physical, occupational and speech therapies, which have been so crucial to his success. We had a lot of appointments when he was first discharged and now only see GI once every three months. Jordan is unrecognizable from how he started and I can’t wait to see what more he has in store.
sharing

5. What advice would you give to a new preemie or NICU family?

My advice to families currently in the NICU is to understand how truly vital you are to your child’s success.  You may feel like your contributions are minor compared to the NICU staff, but your touch, voice and attitude are just as important.  Sing the same songs, tell the same stories, say your child’s name every chance you get.  Ask to be involved in cares: changing diapers, taking temps, oral swabs, there are many ways to learn how to help your micro preemie and it will make you feel so much closer to them until you can kangaroo.  And finally, please take good care of yourself.  Eat, sleep, and take care of your health because your child needs your hope, positivity and encouragement.
sharing
Thank you so much to Sara for sharing her story. You can read more from Sara on her blog The Micro Mama.
Please leave any supportive comments or questions below.

Filed Under: Micro Preemie Mondays Tagged With: 25 weeker, birthday, blood transfusions, CMV, CPR, feeding tube, gtube, hellp syndrome, micro preemie, micro preemie monday, ng tube, NICU, preeclampsia, preemie, premature birth awareness, sharing stories, third birthday

Comments

  1. Katie says

    February 18, 2019 at 9:43 am

    While I don’t have any kids, I always find it so beautiful the way little babies are able to have such power and strength. Thank you for sharing Jodan’s story. What a sweet kiddo!

    Reply
  2. Charlotte says

    February 18, 2019 at 11:15 am

    My goodness, you mommas are strong 💪 I can’t even imagine going through this and wondering if baby will make it through the night but so glad that there were wonderful nurses and staff to help you during this highly stressful time. Also this just made my heart leap:

    “You may feel like your contributions are minor compared to the NICU staff, but your touch, voice and attitude are just as important. Sing the same songs, tell the same stories, say your child’s name every chance you get.” ❤️❤️❤️

    Reply
  3. Patricia @ Grab a Plate says

    February 18, 2019 at 9:10 pm

    What a wonderful post! I’m sure this was, and will be, a great inspiration and “tool” for others to use 🙂

    Reply
  4. Christa says

    February 19, 2019 at 9:16 am

    I’m so emotional reading this post. My oldest was a NICU baby, and even though it was 18 years ago, I remember it vividly. Thank you for highlighting this strong mama and her amazing little boy.

    Reply
  5. Mila Clarke Buckley says

    February 19, 2019 at 9:39 am

    Thank you for sharing this! Having hope and prayer and the strength of your child makes it all worthwhile.

    Reply
  6. Megan says

    February 19, 2019 at 11:26 am

    Oh wow this is beautiful. Our first baby spent a month in NICU then only made it home for 2 weeks before we needed another month in PICU. Such an emotionally turbulent time – your anxiety and pain warring with your excitement and love. Thank you for sharing!

    Reply

Trackbacks

  1. Complicated Stories: How Sharing Helps - Shann Eva's Blog says:
    March 18, 2019 at 6:23 am

    […] shared her journey on this blog, and she also has started a blog of her own. When she first reached out to me, I was so honored […]

    Reply

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Meet Shann

Shann Hi! I'm a mom, writer, and dancer. I love sharing my parenting experiences, my healthy living tips, my money saving ideas, and our travel plans. My passion to help other women inspired this blog. I hope you'll stay a while and come back often.

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