Lessons from the NICU: Strength

Sweet Pea's first 90 days of life were spent in the NICU at Dartmouth and Boston Children's Hospital. Tomorrow she'll be nine months old and we will celebrate having been home for twice as long as we were in the hospital. Although it's been six months since we left the hospital, it often feels like it was just last week.

I often think about the things that I learned (about myself and about life in general) from spending so much time in the hospital with her. Over the next few Friday's I'll share some of the insights I had from that time.

Glacier National Park - a pic from our honeymoon

I never thought of myself as a particularly strong person. I've survived my share of crap in life, but I've done it with a lot of worrying and crying and lost sleep. However, I became strong - or perhaps just aware that I am strong -while we were in the NICU.

When Sweet Pea was born at 32 weeks gestation I thought we were doing pretty well. The docs were able to stop labor at 28 weeks and I successfully baked her another month (while on bed rest). When she was born on August 5 after 18 hours of scary labor (more on that another time) she was a good size for her age, she had 9s for her Apgar scores, and she came out screaming. I even got to hold her after they got her cleaned up!

Later that night I got to breastfeed her and she seemed to be doing great. Although sleep was interrupted all through that first night because I had to pump, I felt good knowing that Sweet Pea was healthy and had hoped we'd be part of that lucky few who get to take their babies home from the NICU before her due date.

Day 3

The next day we were told that she was slightly jaundice and needed to be kept under the lights. We understood that this was nothing out of the ordinary and actually thought her "sunglasses" were cute; she looked happy under the warm lights in her little incubator. My husband and I got to kangaroo with her off and on over the next few days - although not for very long because we wanted her to get as much photo-therapy as possible so we could take her home. I continued to pump away and would offer her the breast on occasion. On day 5 things started to look bad - this is what I wrote on my personal blog:

We spent the day with Caroline but she wasn't doing so hot. I tried to nurse her but she wasn't at all interested, instead she just fell back to sleep. They continued to feed her my milk but she stopped digesting it and thought perhaps she had a slowed digestive system from the jaundice. We left around 5:30PM and I just had a bad feeling. She was so out of it all day but I am hopeful tomorrow will be better.

Day 5 - under the lights, but we'd been moved out of the critical side of the NICU

Around 9PM that night the NICU called to say that after we left Sweet Pea started to have a lot of As & Bs (apnea and bradys). She had also started throwing up and she was very lethargic. (To this day I don't understand why they didn't call sooner.) We rushed to the hospital:

The doctor's suspected an infection of some sort so they started antibiotics. They took blood and urine for a culture, took x-rays, and did a spinal tap to check for meningitis.  ...She was continuing to stop breathing and her heart kept slowing down, in addition her blood sugar levels were sky high. As we were standing there my nightmare came true. My poor baby would not breathe and turned an awful shade of purple and we were told to leave her area. They tried a C-PAP to get her some air but it didn't help, so they had to intubate her.

The "nightmare" I spoke of was literally a nightmare I had had the night before. I dreamed that Caroline had died in front of me.

Day 6

This was one of the longest nights of my life. Throughout it all I kept telling myself that if I could survive this, I could survive anything - and that mantra came in handy as we experienced similar trauma two more times over the course of Sweet Pea's hospital stay.

Within a week of this event Sweet Pea would be diagnosed with NEC (necrotizing enterocolitis - which, as it turns out, she didn't actually have; instead she would later be diagnosed with a stricture in her sigmoid colon and would require surgery to remove it) and central diabetes insipidus. She would have her first surgery to place a subclavian IV line, her first ultrasound, and her first MRI. We would also experience the DDAVP drug shortage for the first time - we had to wait a day for a diagnostic test because the hospital couldn't get it in.

Things would get worse before they got better, but today we are home with our precious baby girl and she is going great!

She's a reader, just like her Mama!