What it’s like to have a baby in the NICU

This was written in 2011, one year after our first born was released from the Neonatal Intensive Care Unit and came home for the first time.

CIMG1185This week, I got to thinking about 1 year ago this month, and our baby being in ICU, and all the things I've never said.

He is doing great. You can't even tell his brain hemorrhaged during birth causing seizures and a 3 week stay in the Neonatal Intensive Care Unit. You'd never know that he had the maximum allowable MRIs, CAT scans, and other XRAYs for someone weighing only 7 pounds 12 ounces. I don't think he even knows.

I'm a different story. I know

I will never forget the moment I forgot what he looked like because we'd only been together an hour, and we'd been apart 2 days. I will never forget our first reunion after 36 long hours apart. He cried a hoarse-weak-medicated-fatigued cry while I was helpless; unable to pick up our newborn because of the endless cables connected to his body. Unable to nurse him the next day because they added a delicate blood port in his brand new belly-button because they ran out of places to stick him with needles.

The first few days are a blur, but I will never forget thinking we were about to meet the on-duty pediatrician, but instead hearing him blurt out that our brand new everything-in-the-world was having seizures and they didn't know why and they are sending him downtown. I can still feel my husband’s heavy hand on my shoulder as he stood stiff, trying to be strong for all 3 of us. I still hear his voice asking "how can someone I just met break my heart so much?" I see the image of our laid-out-flat-sedated son, in a mobile baby ICU unit, insulated because of winter, about to be transported, taken away from me, from us, across highways, across snow, to strangers I didn’t know…when he had just been in my belly 3 hours before.

The tender moments were the worst. The times when even the medical professionals put the relationship between mother and baby as the highest priority over the next procedure, these scared the crap out of me. They told me how bad this really was, that they wanted mom to spend some special moments with this mystery of medicine, that no one knows how to fix, so she will have something to remember… just in case…and so she doesn’t go crazy because this kind of separation is not natural.

We measured days based on if they added a tube or machine to our precious baby, or if they took one away. I remember almost 4 days in the NICU before James and I had the nerve to ask each other "What if he doesn't make it?" I won't forget how our life became a boot camp of my husband getting us to the hospital as early as possible, sometimes 6 am, just for me to force us home to sleep again at 11 pm.

We each dealt with it differently. He wanted to stay posted at the bedside 24/7, even if he became a zombie. I needed breaks from the insanity of the NICU beeps, fluorescent lights, and all the other sick babies around us in the massive 55 patient unit. I will never forget when my husband had to go back to work. I remember calling the secretary at his school to pull him out of class a few days later because things were worse; the doctors were planning something categorized as brain surgery.

I remember looking at my brand new 6 day old baby and praying he would live until I made it back the next morning. I cannot forget seeing his skin so swollen and eyes puffy from IVs and so many medications. He just looked so sick.

I will never forget feeling guilty because I just couldn't do it anymore. I could not go and sit at the hospital for 15 hours straight, again. Or, the very next day when I was so worried about our warm 7 pounds of baby that I cried all night and called the nurses every hour to check on him. Many nights, the only way I could get to sleep was by crying myself there. I remember going to sleep one night with all his baby clothes in our bed…as if surrounding myself with all the things that should be, would help.

I am still crippled by all the people; who we will never be able to thank. People sending us notes. People praying for our son. People bringing us food. Dropping off vending machine $. Praying with us and the entire waiting room. Crying with us. Crying for us. Sitting with us for hours. Sitting at the baby's bedside so we could finally sleep a little. Trying to help us stay sane. Taking our dog, no questions asked. Picking up family from the airport. Driving me around because I was still on pain meds. Holding our hands. Hugging us when we all couldn't cry anymore. Celebrating with us when we had a good day or few hours. People coming from remote corners of our lives to help in every way they could. I still remember the look almost everyone gave, with the straight mouthed smile…the look that said, "Yes, this really is this scary, and we have no idea what to say."

I can never forget seeing my naked 3 day old under a warmer. I sometimes still take his vitals in my dreams, like we did 20 hours a day for the longest 3 weeks of our lives. I never thought I would live in an office chair, crouched over a plastic baby cart, staring at this baby trying to treasure every single moment, memorize every wrinkle, and hear every breath. Just in case. I remember my arm going to sleep draped over the side of the plastic bin-bed with my hand on his stomach while he slept. Trying to make up for all the time we had already spent apart, all the needle pricks, all the x-rays, the sedations, and strange people taking care of him.

We watched so many other babies go home. Babies with holes in their tiny lungs. Babies with heart deformities; those were easy problems to fix. But, a baby whose brain is bleeding from who-knows-where and is having seizures, not so much.

I think this might be a lot easier to dismiss as a gift. A reminder that life is short. A reminder that HE still does real life miracles. Except for Ezra. A baby born the same week as ours. Discharged the same week as ours. Died at home a week later. He died! Parts of me still scream "That could have been us!!"

I remember that God is mysterious. The creator of the universe holds each of our every breath in his hands. Every. Breath. Every. Heartbeat. He still does real life miracles.

I'm still a little shaky when I run across pictures of the hospital days. A recent trip to the ER almost brought me down. These tears aren't sad. These tears are still completely amazed that ours made it. OURS MADE IT! That our baby son's brain is completely healed and the doctors didn't do a thing, but watch.


11 thoughts on “What it’s like to have a baby in the NICU

  1. As I sit here @ 4 am nursing my 4 week old little Jacob thinking I’d rather be sleeping this reminds be of the blessing of being able to be AT HOME with my healthy baby. Thank you for reminding me of how truly awesome God is and what a blessing our children truly are. And JT is quite the handsome little fellow.


    • Congratulations! someone told me this, and it got me through so many of the looooong nights “they are so little, and need to be held so much. But, very soon, they won’t let you. Enjoy every cradle and hug before they get too old!” And boy were they right!


  2. Wow Nicole, wow. The things you had to endure in the first moments of JT’s precious little life are astounding. It shows me just how strong you and James are. I am so thankful for and humbled by your example of unconditional love from day one of his life. You are truly amazing parents and JT is extremely blessed that God provided you BOTH to care for him and watch him grow into who God created him to be. It reminds me that I need to cherish every second I have with Nathan and not get so stressed out with the little day to day stuff. Thanks! You rock! FYI.


  3. Nicole, thank you for your post. The tears are flowing from thanksgiving over JT! And sadness for Ezra’s family. The Lord gives and takes away. Praying that my heart will still always choose to bless His name always and in all circumstances. Happy Birthday JT! May your life always stand as a testimony to the Greatness of God!


  4. Thank you for sharing your heart. It totally brought me back to that time. Yes, praise to God! JT is such a blessing and gift (even from a distance). God’s hand is truly on his little life. His picture today is ADORABLE!!!!! Love and kisses to the big 1 year old from Nana!!!!!


  5. I too remember watching my baby girl struggle. Nicole I came to you as quick as I could, but felt so very helpless. As your mother, I wanted and needed to fix this terrible drama unfolding before our eyes. As always you taught me. I watched my daughter turn to our Lord for direction and strength. He did not fail you. I watched all those sent to help and comfort this new struggling family. Always bringing the needs of the hour and God’s love. It was amazing. I knew then that this was God at work. If you looked carefully, you could see the arms of the Lord around this new family. Despite all the procedures and passing time – I knew that this little man would be fine — he was in the arms of god. He was a miracle in many ways yet to be seen.

    This tiny sick baby united people around the world, and from all walks of life, in prayer. What a beautiful legacy this boy will take into his life. Not only was he loved and wanted dearly, but through him and the strong faith of his mom and dad, God again illustrated the power of prayer and the miracles he bestows on us everyday.

    Thank you Nicole & James for my beautiful grandson. Thank you God for keeping him safe in his journey. May we never forget how God has blessed us all.

    All my love and hundreds of kisses ……… Grandma Patti
    P.S. Texas misses you JT!!!!


  6. I was just now able to read this straight through without breaking down. Thanks for taking the time to remember this for all of us who weren’t there in person, only in prayers. JT is truly blessed to have y’all as parents. Hug him for me.


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