In the beginning, God created the heavens and the earth. He also created the NICU nurse. Arguably, His best combination of sweet and salty based on our experience! Entering the doors of the Neonatal Intensive Care Unit for the first time made it feel like God had skipped town completely. Turns out, He does some of His best work there. Funny how the things that seem the hardest to walk through often become the most treasured. I’m getting ahead of myself. Let’s work on getting to 31 weeks before we get to the good part.

 

The first half of my pregnancy was normal. We didn’t have any set gender expectations going into our 20 week ultrasound, but Jonah quickly showed his boyhood within the first few minutes and we were thrilled! We chatted and laughed as the tech struggled to get accurate measurements because Jonah was so wiggly. She noted in the multiple decades of her career, this was the most active baby she’d seen and we needed to prepare ourselves. Talk about foreshadowing! We continued to watch him flap around but the levity in the room quickly diminished after multiple femur measurements came up with the same result. Too small. Our baby measured 3 weeks behind gestational age, and my pregnancy was officially no longer normal.

 

The next week I had my first appointment with Maternal Fetal Medicine, the office painfully across from my regular OB… a blunt reminder that from now on I was turning left through the high risk door, instead of turning right where things made sense. Honestly ironic, given my medical history. I’ve had MS since I was 20, so normal isn’t really in my DNA anyway. I was assured I could have a healthy pregnancy and to this day we don’t know what caused everything to go wrong, but in any case I knew where my place was; upstairs to the left. Each week scans checked doppler flow, measurements of different bones and all that goes along with an IUGR (intrauterine growth restriction) pregnancy. Each week, the gap in Jonah’s lack of development became more apparent, until we were told to be ready to deliver at 36 weeks for his safety. But when my water unexpectedly broke at 31 weeks, the gloves were officially off. In we went to Memorial at 2am, oddly calm and completely ignorant of the weeks ahead.

 

My emergency c-section was that afternoon. The half a minute we spent listening for a cry when Jonah was pulled out was excruciating. At only 2lbs 13oz, his cry was about as strong as a kitten’s (sooo sweet) but he was breathing well and I stole a quick kiss before he was whisked away to the 3rd floor. The next morning, a small note nearby started my day with words that brought life and put air back into my lungs. “Jonah had a great night, plan on skin to skin time today.” Imagine being separated from your baby immediately after birth and being left alone on a different floor and unable to move. The painful opposite of what that experience should be. That note was the first confirmation that I would actually get to hold my baby at some point. I had no idea if it would be safe to hold my son, so that note was life to me. I realized later it was Barb’s handwriting. Of course. Welcome to the good part. 

 

Matthew’s first encounter with Barb was so telling. He went down to the NICU from our hospital room to deliver my first vile of liquid gold (2 minuscule drops of colostrum I tried to express for an hour.) Barb took it and proceeded to show him the correct way to put the name labels on them in hopes he’d “do better next time!” Matthew strolled back in with that smile of his that showed all his teeth and announced “I think we have a snarky NICU nurse!” Utter shock and delight all over his face! That was the first time we laughed and took our first real breath together after the most overwhelming day.

 

The sass only escalated, with Matthew usually fueling the fire and Barb regularly besting whatever he had prepared for her. He knew to always fold and say “yes Barb” as we left for some sleep. Night shift became the highlight of each day and kept us going through the surreal haze that was our life. A few nights in, Janice landed on the scene- the sweet to Barb’s salty Margarita rim! The moment Matthew heard that Scottish accent I knew it was just a matter of time until he’d find some way to spark up a conversation. Their first interaction was a setup from Barb. Matthew watched Janice change out another baby’s bedding next to us and politely asked her why she chose not to use gel pillows in that particular isolette since it was clearly the “gold standard” in preemie care. Her smile told us she wasn’t fooled and knew to implicate Barb immediately! That was the start of gaining lifelong friends/family that we thank God a little extra for every night.

 

Our entire NICU team was amazing. So many other nurses also cared for Jonah through his first weeks of life, but he was always meant to be Barb’s boy. She was with us on nights for almost the entirety of his NICU stay, often picking up extra shifts to be with him and giving us some peace of mind and the ability to sleep a little more soundly. I was often greeted with pictures of Jonah and notes in the mornings. She was present for every first in Jonah’s life; every setback and milestone, gram gained, newborn screening, continuous pump feed, apnea, Mother’s Day and Father’s Day… the list goes on. Our bond to her was so strong because she was there to share in every experience and took care of us as much as she did Jonah. That sass was matched only by her heart for others and the pride she displayed in her profession.

 

You learn so many things in the NICU. For instance, babies as small as Jonah commonly forget to breathe and need reminders (that’s fun!) They also can’t handle the type of stimulation you’d give a typical newborn, and need to be held a certain way to keep their airways open. Our education consisted of statistics of survival rates based on gestational age, terms like cystic fibrosis, cerebral palsy, fragile X syndrome, developmental delays, and the always delightful NICU buzzwords- apnea,  desaturation, vitals, retinopathy of prematurity, actual vs corrected age, kangaroo care, high flow cannula, CPAP mask, (or prongs if you have a death wish) NG tube, suction catheter, pulse oximeter, PICC line, phototherapy lights, milk fortifying… it literally doesn’t end so I’m ending it there. Part of the struggle was adapting to all the terms and trying to spend as much skin to skin time with our tiny miracle as we could, all while trying to look like we had a clue of what we were doing! All of it was overwhelming all of the time, so having nurses who saw that and stepped in to provide emotional support, humor and a listening ear was life saving.

 

It took Jonah 2 months to grow and become healthy enough to go home. He’d have to gain 3 pounds, control his temperature in an open crib, take feedings without the aid of his NG tube, pass multiple checklist items and go a certain amount of time with no apnea spells. It was brutal watching other families come and go while we took up residence as what felt like the NICU “lifers.” For Jonah, the oral feeding was the biggest challenge. He had to be continuously pump fed for several weeks because large volumes would make him immediately throw up. When he finally was able to start nippling with a bottle, the amount of work it took for him to suck and swallow often burned more calories than he was taking in. Trying to find a balance was very time consuming, but he eventually got it down. To think that was just the beginning of the feeding problems to come.

 

Once Jonah mastered the bottle, things escalated quickly. We found ourselves at the end of our NICU stay, something we really weren’t emotionally prepared for. You’re so torn, as you want your baby home so badly, but with that comes the reality of being on your own without monitors or your nurses to rely on. By this point, we were more than equipped, but having to let go and trust we were enough was so much harder than we anticipated. I’ll always remember making Matthew take Jonah’s name tag off his crib because I couldn’t bring myself to, and both of us crying more as we were leaving than we did entering the NICU for the first time. We looked like a couple of loons being let out of the nut house!

 

As promised, Barb helped us settle in at home and stayed in touch. We talked daily, which really consisted of me panicking and needing her for the first good while, and I still need her 3 years later! She and Janice came out to the house to do Jonah’s newborn photoshoot and Janice is still taking all his pictures and very happy that Jonah now loves her as much as he first loved Barb! More than that, they’re family now. We still talk regularly, take annual trips to the beach and we continue to do life together as Jonah grows. He loves them both so much, and he and Janice’s dog Paxton are best pals! I’m so thankful he gets to grow up with a Janny Annie and Nana B. He’s so loved, so spoiled and 100% himself when he’s running around in Janny’s backyard all summer or sneaking into Nana B’s chicken coop! I was terrified that after being discharged we’d lose them, but here they are 3 years later. Life is so much richer now.

 

The NICU will always be my favorite part of the story. Not because it was void of trauma or heartache, but because of all the things it was full of. We were blessed to witness God growing this unimaginably tiny but whole and complete miracle in front of our eyes daily, we have treasured memories, (some of which won’t be shared because they’re just too special,) and we left with a healthy 5 pounder AND 2 new family members we couldn’t imagine living without! The toughest parts of life can also be the most special.

 

That’s a tiny snapshot of our NICU story. So many nights of tears and laughter, and memories of a lifetime. It was also the very beginning of a very long road, but for now, I’ll sit here and reminisce the good part.