Words of Wisdom for Life in the NICU
I pray Jacob’s story may give hope to other parents who are facing similar situations. Please know that you are not alone and that each day will get easier.
Here are my top ten words of wisdom for parents who are experiencing life in the NICU.
1. Pray! God will give you his peace that surpasses understanding. There were days I didn’t think I would make it through, but we did with God’s strength. The test results may not be what you want, or there may be days you receive more bad news than good, but God will be there with you through it all.
2. Journal your experience and thoughts. It took me almost 3 months before I was able to write down our story, but it has been very therapeutic. Even though it is difficult now to face the memories, you will be glad you did months from now.
3. Ask for help by requesting one family member to be in charge of delegating. Everyone kept asking us to let them know how they can help, but I was so overwhelmed that I didn’t even know what to ask for. Having another person in charge of making phone calls, posting news to a website, or coordinating meals will help ease additional stress. Don’t be afraid to request help...people like to feel needed and they really do want to be there for you.
4. Caringbridge.org I wish I had known about this website when we were in the hospital. It was so difficult keeping everyone up to date each day. I couldn’t remember who I had already talked to and what information I had shared, since every couple hours there was something new happening. This is a great website where you can update your page and inform everyone at once!
5. Take pictures and video clips. I really do wish I had taken more pictures and video clips during our time in the NICU. My friend Mallori gave us New Year’s Eve hats to take our first family picture when we were in the hospital and I am so grateful to her because I cherish that picture. A part of me didn’t want to take pictures because I wanted to erase the experience from my mind, but I promise, you will be glad you did!
6. Bring your little one clothes or a special blanket from home to wear. It was so nice when my sister Danielle brought Jacob a few of his newborn clothes from home. It brought a feeling of comfort.
7. Find something to keep your mind busy. This was the best advice my cousin Greg gave me. It really is truly important in order to keep yourself sane. I was so stressed that I would just sit and stare at the NICU screens watching his vitals and my mind would be going through every possible scenario and the “what if”. As difficult as it is to switch your mind off, it's a must when going through a tough situation. So don’t feel guilty for reading a book, watching a movie on your laptop, or playing a quick game on your phone.
8. Join a support group that addresses your little one’s situation. My husband found a wonderful Beckwith-Weidemann support group on Facebook.com. We are both so grateful for the insight from other parents who know what we were going through. It’s great to be able to post questions and receive responses from someone who has experienced it first hand. There were times I questioned the doctor’s suggestions, and it was invaluable to have answers to our questions and to hear what others had chosen to do. It will help put your mind at ease when making a decision.
9. Request for a state social worker. We were given the contact information of several state programs from the NICU staff. You can look into your options at the hospital during the dreadful hours of waiting in between tests. It can often take awhile to get enrolled in state programs, so it doesn't hurt to get started as soon as possible.
10. Another great website I would like to share is www.youcaring.com. As if spending time in the hospital isn’t difficult enough, but the added stress of financial responsibilities can be overwhelming. Create a funding raising webpage using the site above, which is the only free one I could find, to help ease your worries of medical costs, and remember to pay it forward in the future for another family.