Our NICU Experience Curve

"Though she be but little, she is fierce." ~ Shakespeare

"Hope and Faith is the only thing stronger than fear." ~ Suzanne Collins

"God gives us only what we can handle. Apparently God thinks I’m a Bad-Ass."

-Every NICU Parent - courtesy of https://hopefaithandrockstars.com

On March 19th 2022, I made it to the NICU thanks to a good friend, my SIL and my MIL. I could not get there fast enough. I took pain medication at the beginning of the drive, knowing every little bump would hurt. I also assumed I would fall asleep and wake up much closer to my girl. Well, sleep never found me. I was running on pure adrenaline. The drive seemed to take all day. Not to downplay the driving prowess of my SIL. I know she flew as smoothly as she could. She's had to rush to the hospital for her babies too, so I know she felt my need to be there.

That first day, Rob tells me that the staff let Ben in to see his sister, but by the time I arrived, he was no longer allowed in the NICU because he was under 12 and not vaccinated for COVID. That felt terrible. It was an awful feeling, but I'm so glad he got to see that she was safe and largely okay. I wish I could adequately explain Ben. He is such a special and wonderful boy. He also feels very deeply. He called via video call every afternoon to read to his sister. He showed her the pictures as he read, careful not to show any animals he thought she might find scary. This helped me, too. It was almost unbearable for me that he could not visit her, and I couldn't hold both of my babies at the same time.

When I first saw her, I felt a wild mix of emotions. Relief that she was safe and relaxed, scared that she wouldn't survive, incredibly happy to finally be there with her, and woefully inadequate thanks to that awful voice telling me I wasn't enough. Not long after I got there I was able to hold her. At first it took a nurse to help me get her out of the little bed and onto my chest. It didn't take long before I was able to mostly do it by myself, or with a little help from my mom or a nurse. The love I had for her was overpowering. Putting her on my chest for the first time in too long felt like a weighted blanket. I felt so physically relieved to snuggle her. To this day she lays on me for the occasional nap or snuggle and I feel like I'm wearing a warm weighted blanket. One that likes to play with my hair and sometimes give big tongue-out Evie kisses.

She had so many wires. An oxygen monitor on her foot that constantly moved, came off, or misread so I was repeatedly terrified that she wasn't getting oxygen or that her heart stopped. Thankfully I quickly learned that she could wiggle a toe and that machine would sound the alarms, so I stopped reacting in any way other than adjusting the sensor. She had little sensors attached to her little chest and tummy. She had her NG tube and oxygen cannula too. I can't remember anymore if she still had the umbilical line in or not by that point. If she did, she didn't have it for long.

So began the two-week stint in the NICU. I loved being with her all day. If I stepped away for any reason, my mama stayed with her. I did skin-to-skin all day every day. I pumped, I tried to nurse when the feeding and swallowing specialists came in. We used a lot of donor milk for the first week or so. Then she had what I was able to pump and formula as needed. I feel so incredibly grateful to the moms who donate breastmilk. I hope they understand what a difference they made for my little girl. For me too. I pray there will always be women able to do so.

We met with so many doctors, nurses, specialists, and staff of all kinds during that stay. The majority of them were so patient and kind that I felt at ease, as much as one could be in that situation. I'd hear other babies cry. There were some who had been there so long. There was one I will never forget. I only saw him from afar, but he had the most heart-wrenching cries. Sometimes it took all I had not to rush in there and hold him. He always had a big team around him. I sincerely hope that baby is okay and is in the loving arms of his parents.

There was another little girl that shared Evie's name. She was in the NICU due to Trisomy18, also called Edward's Syndrome. I learned that her family lived near us, and the week after we brought Evie home, they brought their daughter home. They brought her home on hospice so she could be surrounded by her family and loved ones. Learning that broke my heart. I think about her and her family from time to time, say a prayer for them. I thank God our girl is here with us, and give her extra snuggles in honor of a mama who can no longer hug her perfect girl.

In our experience, the NICU and children's hospital is a truly remarkable place full of every imaginable emotion, professionalism, superb nurses and experienced doctors that work tirelessly to help babies heal and overcome odds. They also supported us. One of the things they did for Ben was give him a doll he could create to help him learn about Evie's needs. So they gave the doll an NG tube and an oxygen tube. They gave him pages to color and kid-friendly information on Trisomy21. He also drew pictures of Evie for us to put in her room. Even though he couldn't be in her room, he wasn't ignored by the hospital. I appreciate that even now.

I've always heard and know it's true that no baby comes with a manual. Ben sure didn't. We navigated 15 months of ear infections, horrible diaper rashes, and expensive formula because that's all he could tolerate. Once he finally got tubes placed in his ears, that improved dramatically. Evie was no different in that we had a significant experience curve at the beginning, and now here we are in the rhythm of our new life and new normal with our beautiful and perfect-for-us babies.