Please tell us about your NICU experience

Michael was my son’s name. He was born 39 weeks 4 days, 3 days shy of 40 weeks. They had to rush him to NICU because a few hours after he was born, his body temperature dropped so they had to monitor and keep a close eye on him in nursery. That very next morning, he had to be rushed to NICU because he stopped breathing and had a seizure. They were able to revive him but had him hook up to all sorts of machines. It was very terrifying as a mother to not be able to hold him with it not even being a full 24hrs after giving birth to him. Mom mode kicked in and I was speechless just having to see him so helpless. They then rushed him in ambulance to a children’s hospital NICU that had specialty doctors that would be able to assist and care for him better.

What was the hardest part about your NICU stay?

Hardest was not being able to hold him and comfort him like I wanted. Not knowing what was happening was the hardest. I felt so helpless. Wishing I could trade places with him just to give him a chance at how beautiful life felt.

Do you feel like you had all the resources that you needed both while your baby was in the NICU and now that he is older?

I felt like I was left to figure it out and reach out for certain help. I felt like I was always told the information but there was really no guidance. Being a first-time mom experiencing this was tough and honestly, I wasn’t in the right state of mind, all I cared about was him and getting him better. As he got older it was tough getting him the equipment he needed because the insurance didn’t categorize his diagnose as disabled. His diagnose was rare but he was still severely impaired. Michael was diagnosed with panhypopituitarism, diabetes insipidus, epilepsy, and septo-optic dysplasia. He was blind and had a feeding tube. If I could request a change in the healthcare system, it would be to have more opportunities and resources for families and single parents who struggle to take care of children who have different needs.

How do you and your significant other balance the needs of your children, your own individual needs and still find time for each other?

I was left alone figuring it out and making the decisions. It was scary and nerve wrecking making sure whatever decision I made when I heard the word “surgery,” to make sure it was the right decision. His biological father was never in his life because he never wanted Michael. He said it was too much to handle financially and that he was “retarded” and wasn’t gonna live long. It wasn’t until I met my fiancé, Henry who took on and loved my children as his own. He loved Michael no different. He participated in all his care and although it was tough as he got older, he still stood beside him. Michael passed away 3 months ago and not a day goes by that I don’t miss him. He lived 11 beautiful years, and I will forever cherish his life. I miss him so much every day.

What advice would you give to parents who currently have a child in the NICU?

Don’t give up! You got this! There’s is a light at the end of the tunnel. God gave us these beautiful blessings of life because he knew we could handle it.

Is there anything else that you would like to share?

Our Mighty God is awesome and we as parents can spread the word and share our stories to those who are experiencing the exact same experience, sometimes worse. Having support goes a long way. I am forever thankful to share such a blessing and I would be honored to share or be a part to help any parent that needs a voice to say, “It is going to be okay.”

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