In honor of Rare Disease Day, we're discussing tips to cope with life in the NICU. A local family, has first hand experience with "NICU life."

Emily and Tyler Lord were thrilled when they found out they were expecting twins! Their baby boys made their way into the world 10 weeks premature. Sweet baby Carson was 2 ½ pounds and adorable little Tristan was 3 lb. 1 oz. After three weeks in the NICU, the unthinkable happened: Tristan was diagnosed with Necrotizing Enterocolitis. NEC is an excruciatingly painful bowel disease that causes indescribable anguish to the whole family.

Throughout Tristan’s journey he spent the first 7 months of his life in the hospital where he would have 5 surgeries and 7 blood transfusions along with numerous other procedures and complications. Though he had such a rough start at life, he has always been a fighter and such a brave little boy. Even during times when the family was losing hope, he continued to show his strength and determination to survive. Tristan is an inspiration and the Lord family refers to both of the boys as their miracle babies.

Emily shares her 5 tips:

1. Prepare for the roller coaster ride of emotions that comes with having a baby in the NICU.

One minute you're holding your baby and excited for the progress they have made and the next minute your baby takes two steps back.

2. Establish a support system.

This can be a combination of friends and family as well as other families in the NICU. They will be the people you can lean on, cry with and vent to. NICU families can be especially supportive since they have fought similar battles and experienced the same feelings and emotions that you have.

3. Ask questions.

There will be doctors and nurses in and out constantly hooking things up, taking things off, and drawing blood. Don't be afraid to ask them to explain what they are doing and why.

4. Be a parent.

You're still your baby's parents, just in a different light. You can still feed them, change them, and read to them. Though it is a very difficult time, try to embrace the life of the NICU until it's time to come home.

5. Celebrate the milestones.

The moment they finally reach that weight you've been longing for, or when they get their breathing tubes out and you finally get to see their whole sweet face, or the indescribable moment when you finally get to hold them!

In the past, the Lord family has gathered donations and assembled care packages for the NICU at Children's Hospital of Pittsburgh. This is such a thoughtful idea if you're looking for something to do to help a loved one with a baby in the NICU.

For more information on Necrotizing Enterocolitis, visit necsociety.org.