Life in the NICU – Rosie’s Medical Hurdles

Our adventure continues as we experience life in the Neonatal Intensive Care Unit (NICU) and face Rosie’s medical hurdles.

*This is PART 2 in our series recounting Rosie’s birth story (check out PART 1).

“And though she be but little she is fierce” – Shakespeare

Rosemary was born at 32 weeks and spent the first five weeks of her life in the NICU.Initially she had difficulty breathing since her lungs were underdeveloped. She wore a CPAP machine which made it easier for her to inhale oxygen and she also spent a day hooked up to a ventilator. It was hard to see – or should I say not see her little face because it was covered up by breathing aids. Thanks to amazing healthcare technology, Rosie was breathing on her own within 4 days (good bye wrestling mask!). She also had an episode of jaundice but that cleared up after a day of tanning in her incubator. Look at her sporting those chic sunglasses!

Our Biggest NICU Hurdle

The biggest hurdle we had to patiently overcome was Rosie’s ability to tolerate her feeds (or take in my milk). Initially, Rosie received drops of my breast milk through an NG tube (a tube that goes through her nose directly to her stomach). The nurses increased the amount of milk every time she was fed to build up her tolerance.

One evening I was changing Rosie’s diaper and noticed blood in it. I remember feeling a surge of anxiety when I felt the nurse trying to conceal her alarm. “Let’s wait to see if the blood will pass on its own” was the verdict. Rosie’s next few bowel movements contained blood as well. Turns out she had something called necrotizing enterocolitis which meant bacteria was causing an infection in her intestines.

Necrotizing enterocolitis was not uncommon for preemies, however the treatment plan was complicated because of some secondary problems. Let’s see if you can follow along! Bloody poop meant Rosie had to give her digestive system a break from taking in mama’s milk. She would have to receive nutrition (and antibiotics for her infection) through an IV. IVs need to be reinserted into different sites (veins) every few days and since Rosie was so small, she only had a limited number of sites on her body, mainly her hands and feet. She had an IV since birth so she was already running out of new sites. The doctor recommended something called a PICC line – basically a more permanent IV. We felt slightly uncomfortable at the idea of such an invasive procedure (it’s not really, but for the emotionally distressed new parent it might be), however we knew it was probably the most sensible choice, so we went with it.

NICU Disappointment & Hope

On the evening after her procedure, we were disappointed to hear that the PICC wasn’t inserted. Apparently Rosie’s veins were simply too tiny – the best of the best doctors and nurses at the hospital gave it a try and failed. Sadly, we came to find our baby sound asleep but with 20 or so little red specks over her limbs. We realized these were scabs from where she had been poked – attempts to insert the PICC. I pictured her timid cry as the needle penetrated her each time and my heart ached. That was one of the moments when I was awakened to the reality of becoming a parent and I wanted so badly to take her place and to take her pain. I was often reminded that though she was tiny, she was resilient and strong. Strong indeed – she had been through more than George and I combined.

A few days later, Rosie ran out of IV sites and desperately required a PICC. Although she was initially on the wait list, she was taken immediately to Sick Kid’s Hospital for the procedure. The hospital is a level one hospital, meaning it offers more specialized care. With different procedures available, the PICC was guaranteed to be in place. An NICU nurse received us and assessed Rosie. As protocol, she told us she would attempt to insert the PICC into a limb ONCE before considering more specialized methods to put it in. Surprisingly, her one attempt was a success. I don’t dwell too much on it but I do wonder why the team at our hospital attempted numerous times and failed… Looking forward, we were relieved that the procedure was complete and that Rosie would be on her way to recovery.

NICU Life Thereafter

Although the journey was far from over, Rosie stabilized and progressed. She finished her course of antibiotics. She started feeding through the NG tube again (yay for no more bloody stool!). Eventually the PICC was removed. Rosie’s last few weeks at the NICU consisted of meeting milestones one at a time. She would learn to breastfeed, wear clothing, take a bath, and basically work on how to be a baby. Stay tuned for posts highlighting some of these milestones!

There is a sense of dissonance as I reflect back on our experience: turbulent yet smooth; a tragedy yet a blessing; sorrowful yet joyful. What I mean is that everything Rosie experienced was “typical” for a premature baby but for the new parent, every diagnosis sparked new anxieties. There is an emotional toll in living through the endless cycle of highs and lows, constantly wondering if we’ll ever be able to bring our baby home. Well that journey did come to an end and a new journey started 37 days later as Miss Rosie was discharged home.

Are you a parent of an NICU baby? How was your experience? How would you respond emotionally to these circumstances? Leave us a comment below!

Be sure to check out the next post in this series HERE.