20 questions to document the NICU journey

What a difference 15 weeks makes?

1. What are the facts?
2. a. Weight/height/gestation info.
   3 lb. 5 ozs. 16 ¼ inches long. 30 weeks 5 days.
   b. Birth info – why did you have to deliver early?
   I had HELLP Syndrome. My blood pressure skyrocketed, my liver enzymes were low and my platelet count was severely low ( in the 20’s and 140’s is normal). I had several transfusions before the c-section even began.
3. What are some of the firsts you remember most?
   I remember the first time I saw Baby Kevin very clearly. I remember trying to walk by myself and then having to be “wheeled” the rest of the way. Carmen, my nurse, and Kevin were with me. The NICU doors opened to Bunny & Renee, the NICU nurses. I started to cry the minute I crossed the NICU doors. My first glimpse of him was in the incubator. He was so small that I was afraid to even touch him. He looked so fragile but yet so perfectly formed. It was an overwhelming moment. I was already proud of him for doing so well.

I remember the first time I saw him without any tubes. I loved bath time because they had to disconnect him from all the monitors and he looked more like a “normal” baby. I remember thinking “Wow, that’s what his face looks like!”

3. Beyond your significant other, who was the first person you told about what did or was going to happen? Why?
   I was too drugged and incoherent. I didn’t call anyone until a few days later. My sister Michelle and my mom did a great job of contacting and updating friends and family.
4. What was the scariest moment?
   One of the scariest moments for me was when I realized that I was going to require a c-section. I was so scared because I did not know the chances of survival for Baby Kevin. I was in shock but it really sunk in when I saw Kevin in the corner of the room. I had never seen Kevin look so worried. My fear was compounded as the room swarmed with specialists. I kept thinking “this can’t be happening!” It was made worse when I was told that Kevin wouldn’t be with me. I wanted him to be able to hold my hand in the OR.
5. What was the happiest moment?
   Meeting Baby Kevin for the first time. A close second was my first time getting to hold Baby Kevin- during the kangaroo care. It was awesome to feel his little heartbeat against my chest. It filled me with hope that God was going to carry us through this NICU ordeal. It was in that moment that I knew he was going to be ok.
6. When you look back, what makes you laugh?
   I made a goal to walk all the way from my room to the NICU. I was moving SO slowly that I almost got hit by the automatic doors- TWICE. It hurt to laugh so poor mom and Ashley had to refrain as I tried desperately to “rush” through the doors! The security guard, Doug, was very gracious and didn’t laugh too hard. He did however promise to report to Kevin that I had really walked down the hallway all by myself! This moment gave me a true appreciation for the ability to walk normally!

After breastfeeding (without a supplemental tube feed) Baby Kevin for the first time, I was overwhelmed. I was SO worried that he had not eaten enough. Maybe they did need to give him a supplemental feed through his feeding tube! I called Heather, a NICU nurse, over so she could tell me if he looked hungry. Yep I guess typical first mom panic? I don’t know how I expected Heather to access his state of hunger? And I remember asking her “He’s still awake…shouldn’t he be asleep if he’s full?” Yeah I just have to laugh at myself now.

7. What was the hardest part?
   After the surgery when I put my hand on stomach in order to feel the baby kick and then realizing that the baby was no longer safely “baking inside”. The unknown scared me because I had this HUGE bandage where he should have been. How was our son doing? I remember frantically looking for Kevin who then told me that Baby Kevin was ok.

It was also hard leaving Baby Kevin at the NICU. I cried on the way home. I feel so robbed, guilty and very sad. We had no idea when he could come home- we just knew it would be weeks.

8. What surprised you the most?
   How incoherent I was. I didn’t even fully understand how sick I was until days later. I had full conversations that people had to remind me of later. I just remembered chapped lips, hot sensations and being really thirsty.

The hospital staff- I loved them!! The nurses were so nice and really made a difficult time a lot better. I made some good friends!

9. Who was there? Who helped you the most other than your spouse?
   Family, friends, church and co-workers. I had a LOT of help from many people. My mom did a lot of driving. While Kevin worked, my mom and Ashley were by my side for weeks. JP, my brother, came every day until he was sure I was stable. He bought food, shampoo and kept on top of all my meds. Erin kept me calm with all her NICU wisdom. Vanessa drove me home from the NICU several times. Cynthia stayed the night with me when Kevin went out of town and played taxi driver a few times. Becca along with my brother took on the role of guardian at the L&D area.
10. What are you most grateful for?
    I'm grateful for Sue, the nurse practitioner in the operating room. She held my hand and looked into my eyes and said "We have an excellent NICU facility. Your baby is going to be fine." That helped put me at ease. Everyone kept saying “ You’re really sick”. I just needed to hear that my baby would be ok.

Most NICUs don’t have private rooms. I am VERY grateful that ours did! I couldn’t imagine breastfeeding or kangaroo caring in a wide open space!

I am grateful for Dana who constantly encouraged me and went out of her way to make sure that I had everything I needed during my NICU stay.

I am grateful for Laura. I was so discouraged one day and she told me "Don't worry your turn will come" I held on to that. It helped me be happy for others and they enjoyed their "turn". I was able to celebrate with them and hold on the hope that each day was bringing me closer.

11. What sounds or smells do you remember?
    I remember the smell of the OR. It had that Lysol smell. The noise of the monitors. It was so calm and quiet when we finally got to bring him home.
12. If you could capture one moment in time and take a picture of it – what would it be? Why?
    LOL- there isn’t much that wasn’t captured on film! Thanks to cell phone cameras and grandparents! I do wish I had a picture of everyone in the waiting room- just because I was not there. Even weeks later, I was finding out about another person that had been there for me and I didn’t even know it! I also wish I had more pictures of the three of us.
13. What would you change about the way you did things or a decision you made?
    I have found peace that God had His perfect plan for us. I do wish that I had known that I had HELLP. The doctors could have taken measures to help him “bake” longer. I wish I had taken the time to enjoy being pregnant instead of researching pregnancy, labor and babies like crazy. I went through the ENTIRE pregnancy section at the library. I was so worried about the labor and identifying true contractions and then it didn’t even apply to me.

I wish I had taken more maternity pictures. I wish I had Faith take some pictures instead of postponing it.

14. What have you learned from the experience?
    I ‘ve learned to be flexible. I like to obsessively plan ahead and sometimes I stress the little things. I have new priorities and while I still do plan, I try not to be upset when the plan changes. I can’t control life by creating a “good” plan. I need to trust God and know that He is awesome and will protect us.
15. Have you changed from the experience?
    Yes. I appreciate things I took for granted. My relationship with my mom is a lot better. (not that it was awful before)
16. How did it make you a better person?
    For reasons listed in 14 & 15.
17. What would you tell other people who are going through the same thing?
    There is hope. It does get better. Try to make time for you and your husband- even if it’s just a dinner together. Pray and spend time with God each day. Take lots of pictures and find a way to express yourself. For me, I turned to journaling. Focus on the positive and don’t be afraid to ask questions. I drilled my doctors and nurses with lots of questions. I needed answers for reassurance. Let your wishes be known to the NICU staff. For example, they knew to save the bottle feeds and bath time for me.
18. Would you/could you do it again if you had to?
    Absolutely! Baby Kevin is worth it all. However we will have to consult doctors before we try again. It may be too dangerous for me. I came really close to dying.
19. How did it feel when you knew you were going to be taking your baby home?
    As excited as I was on my wedding day! I got the call while I was driving on 1604. I had to pull over because my heart was racing from the excitement. I called Kevin right away!
20. Four words that describe the experience
    Life-changing. Miraculous. Frightening. Humbling.