September NICU Awareness Month – My NICU Experience


In honor of September being Neonatal Intensive Care (NICU) Awareness month, I wanted to share the 3 weeks of my NICU experience with Max (originally written on September 21, 2014).  The Neonatal Intensive Care Unit is the last place you expect to send your child especially if you expected to deliver a full term healthy baby. Since Maxwell was born early at 32 weeks and was born not breathing, he was sent to the NICU to get better. I’m thankful and forever grateful to those NICU nurses and neonatologists who cared for Maxwell the 25 days/3 weeks he spent in the NICU. Below are my thoughts each week he was in the NICU.

Week 1

I wasn’t able to see Maxwell until Thursday, he was born on Tuesday and my body was stable. I was still on oxygen, but was off life support (back story on what happened here) and breathing on my own. I had even began to get out of bed and asked for them to remove the catheter. My trama ICU nurse wheeled me and my oxygen tank down to the NICU so I could see Maxwell. He was so tiny and I didn’t want to touch him because I thought I would hurt him. The NICU nurses were extremely helpful and taught us how to do it all from taking his temperature to feeding him to changing his diaper.

Here is a video of my first time holding Max in the NICU.  A little pixel but you can see me with my oxygen tank on and still in a wheel chair holding him.

We were waiting the first week for an MRI to tell us if he suffered brain injury from not having oxygen at birth. The MRI told exactly what the neonatologist and neurologist expected he had insults to his cerebral cortex and basil ganglia. They didn’t know how his brain would develop and if he would have cerebral palsy or any other physical or learning disabilities. They basically said we have to wait and see how he develops and will watch him until he is 2. I was devastated and felt guilty for how he was born. My rainbow baby that I asked God for was not packaged the way I expected, but neither was his birth or me having a hysterectomy at 29 years old. God was in control and I decided then that I would love and speak life into Maxwell every day until it’s manifested.
Week 2

I was discharged and at home not able to drive due to my pain medication. I was up pumping every 3 hours to feed Maxwell. I couldn’t sleep in the bed or the couch because of pain. I had to sleep in a chair until my pain went away. I went back and forth to the hospital everyday twice a day during the morning and at night. This week my grandma in love drove me because I was still in pain meds. I met with social workers, nurse practitioners, physical therapists, lactation consultants, and his bedside nurses. He slowly moved from taking milk from the feeding tube to taking a bottle. He was doing very well that I almost thought he would come home. However he wasn’t holding temperature and had to be moved back to his isolette. The going back and forth to the hospital took a toll on me and my husband. I was defeated and frustrated. I blamed myself and God on why Maxwell came early and had to be in the NICU. I just wanted him to be home even though I was still recovering. 

Week 3

We started to see the light at the end of the tunnel. I signed up for the mandatory baby classes like CPR, caring for your preemie, and watched the required DVDs. Maxwell had the feeding tube removed and was taking all his bottles. He even breastfed for a little bit. His temperature was still fluctuating and had to be stable before they sent him home. We made a plan for his formula feeding and for me attempting to breastfed him. The nurse practitioner was ready to discharge him until his temperature dropped again during his 2 hour car seat test. Yes, they make the preemies sit in the car seat for 2 hours before they send them home. He had to be warmed up again and if he didn’t maintain his temp he would be moved back to the isolette. Which meant another week in the NICU. I was disappointed and upset I got my hopes up only to be turned down. Maxwell ended up holding his temp after they warmed him up and was able to come home a day later than we had thought.

25 days 3 weeks later and our baby boy was home.  August 19, 2014 to September 13, 2014

Below are my 2 quick tips on how to cope with life in the NICU.

  1. Embrace, Understand, and Become an Advocate for your child.  Your child is in the NICU because they need to get better.  You have to embrace and understand that first.  Once you come to terms with that, learn about everything that the nurses and doctors are doing.  Become your child’s biggest cheerleader and advocate. No one, I repeat, no one knows what is best other than you for your child.
  2. You are not in control.  Only God is.  Yes, God is the only person in control.  Once I was able to understand that it was out of my control and in Gods control I was more content in waiting until Maxwell was ready to come home. Your child will come home when THEY are ready.  Continue to ask God for patience in waiting on your little one to get better in order to come home.

I was an emotional mess those 3 weeks trying to understand and comprehend not being able to have any more children, and what that meant for my marriage. Then the thoughts overwhelmed me of parenting a potential special needs child.
“but through it all I remember that he loves me and he cares. He will never put more on ya than I can bear”. Kirk Franklin

Keep the Faith!

Posted on September 17, 2015, in Disability, doctors, Epilepsy, family and friends, Gastronomy Tube, HIE. Bookmark the permalink. Leave a comment.

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