In 66 days my little baby boy will be a year old. And I know that I’m going to blink and it will be his birthday, but the first 66 days of his life in the NICU were anything but fast. I felt every painstakingly long moment as we were apart.
Isn’t time strange? At times it can feel like a rushing river, moving so fast that if you aren’t careful you will end up in a new place unknowingly. But other times it can feel like a stagnant pool collecting algae. Both water, but depending on the circumstances can be so different.
Life typically moves so fast, but in that season we were forced to move at a slower pace. Those first 66 days of Eli’s life felt incredibly void of movement. We sat in that stagnant pool. Constant waiting. No control. Deep grief.
As we near celebrating one year of life for Eli, I wanted to take a moment to pause and reflect on our NICU stay. Because while it was one of the hardest seasons of my life, there were also rich lessons to learn.
Again, but oh so different
NICU stays are hard however long. I already knew that fact and experienced a 9 day stay with our first child. So I was accustomed to the heartache of being wheeled out of the hospital with your bag on your lap instead of your new baby. I was accustomed to the 3 minute hand washing that was required before entering the NICU. I was accustomed to the empty bassinet in our master bedroom. But looking back our first stay seems super short even though in the moment it felt long. When you switch from days or a week in the NICU to months it really does become a whole other experience.
I’ve never felt so helpless
In the beginning I was so weak both physically as I recovered from birth and emotionally as I came to terms on the reality of our situation. The NICU was deep in the hospital and those first few days I was too weak to make the walk. So I would have to be pushed in a wheelchair. Sitting in that wheelchair was an outward representation of what I was feeling and made it all too real. I felt helpless, weak, powerless. I couldn’t do anything for myself. And I absolutely hated it. My husband actually had to force me to sit in the wheelchair, which at the end I was always glad because I never would have been able to make the walk there and back. He was looking out for me when I stubbornly wouldn’t accept the help I needed.
Music touched my soul in a new way
God, I’m on my knees again
God, I’m begging please again
I need You
Oh, I need You
Walking down this desert road
Water for my thirsty soul
I need You
Oh, I need You
Holy Water, We The kingdom
This song – Holy Water – from We the Kingdom released right about the time Eli was born. It often played on the radio as I made my daily trips to see my baby in the NICU. It resonated and felt like my anthem. My soul needed these words as I walked through an intense period of my life. Like this song, I often turned on the radio to hear the perfect song I needed to hear as I traveled back and forth to the NICU. I felt so many lyrics so deeply.
I didn’t always want to go
I have a confession. I didn’t always want to go. Often people asked or assumed I was going everyday. It actually put a lot of pressure on me because it felt like what a “good mom” would do. Of course I wanted to be with my son, but with another little one at home it was a complicated puzzle to figure out on a daily basis. It was absolutely exhausting. Everybody responds to these hard circumstances differently. Assuming or asking about daily visits can put a lot of pressure on the family about what is the “right” way to respond to a long NICU stay.
I felt so incomplete
After I had physically healed, I would go out to lunch or shopping with my mom. Very normal activities. But I always felt so incomplete. When strangers saw me out with my daughter, they had no idea that I was a mom of two. This mismatch of appearance and reality was hard. I just say this because you never really know what’s going on with people. Be kind.
A strange home
After a few weeks into our stay, we settled into a routine, a new normal. The NICU felt like home. Typically the NICU is a little like a revolving door, so many babies came in and left during Eli’s stay. I didn’t like it when there were crowds or lots of extra people around. It felt intrusive. Like 20 strangers in your living room while taking care of your newborn. We spent a lot of time there and I found myself enjoying the casual chats with the nurses. Now, I catch myself wanting to call up the NICU nurses to let them know how well Eli is doing.
Holidays
We spent two holidays in the NICU. I remember walking in on Halloween and feeling like I should have brought a costume to commemorate his first holiday, but I was too exhausted. So I was absolutely delighted to see him dressed up in a superhero cape and mask. For Thanksgiving they made a turkey out of his footprints. These extra efforts put forth by the staff were so special. It definitely helped make the missed holidays not sting as much.
When is he coming home?
Often we were asked when he was going to come home. I appreciated that people were thinking of us and checking in, but I really wished people would stop asking me this. I never knew. It just shone a beacon on our prolonged waiting, our helplessness in changing the situation. In fact, we had a false alarm where I thought he was coming home in a few days. I was so excited and told everyone. Then Eli encountered a bump in the road that pushed back his release and it was extra crushing. I managed my expectations pretty well during the stay, but I had let my guard down and assumed Eli was ready. After that we didn’t share with anyone about his timing, even our family. We just sent a picture of all of us at home to announce it.
God didn’t promise to heal my baby
One of the hardest things I struggled with was knowing that God did not promise to heal Eli or bring him home faster. I could absolutely pray for these things and I did. But it was hard wanting those things so badly and knowing that I was not guaranteed it. I knew that God promised to be with us and I had to trust His timing and His ways.
This season was like being tossed around in the ocean. So many tears, so many screams let out in the car, so many different doctors and treatment plans. But God was faithful to sustain us through this turbulent season. I’m so grateful that Eli has been home with us for months now and that in a short 66 days we will celebrate his first birthday.
