"I'd never wish this on my worst enemy."
That's the quote I can remember the NICU nurse saying as I stood there, standing by my baby girl's incubator in the middle of the night. A first time mom, I'd stood outside my daughter's room looking for another nurse to help me as I felt my daughter's tube that was to clear contents of her stomach was clogged again.
I was embarassed; not wanting to be "that mom". She looked at me with understanding eyes instead of the annoyed ones I'd just felt not long before from the young nurse assigned to Anna that night. Still a patient myself, she looked at my with no judgements and helped Anna into a position where the tube started draining again. The tears I'd been fighting back as my hormone high from my daughter's smooth yet surprising early delivery just a day and a half before came crashing down. I apologized for my tears, but she gently took my hand and placed it on my daughter's back. That's when she said the words that have stuck with me ever since. I'm sure there was more with it. Reassuring words that my feelings were justified, but what I remember is that the NICU is not something she would wish one her worst enemy.
She left the room and my Anna held my eye contact as I continued to stand there with my hand on her back. She slowly drifted off to sleep, occassionally reopening her eyes to check that I was still there. That was when I finally felt that unbreaking connection, knowing that I would do anything for this little girl.
Anna was born 34 weeks 5 days. Her duodenal atresia was discovered on an ultrasound 2 weeks earlier when I was measuring 4 weeks ahead. It was a diagnosis that came with more questions than answers. They knew there was a problem with her intestines causing excess fluid to build around her, but they wouldn't know the type or extent until she was born and in surgery. I read the paper I was given listing the dangers to her while I was still pregnant, once my water broke and the birth defects statistically also associated with babies born with duodenal atresia.
The week she was born, I went by ambulance the 2.5 hours to the hospital where Anna would be delivered. I was contracting because of how distended I was. Our choice was to do nothing or to attempt to drain some fluid. By that point I'd felt like my own body wasn't safe for her anymore and we opted to drain fluid. The next day my contractions felt different, but I was sent home told this was my new normal. A day and a half later I went in and discovered I was leaking fluid just in time for the rest of my water to break. My husband and I drove ourselves back down to the bigger hospital and had a very smooth delivery. Her cry was perfect.
On her third day, my husband and I walked her down to her surgery. I'd slept maybe an hour in her room, but mostly held her hand as she laid under UV lights, mask over her eyes and tube down her throat. It was the hardest walk of our lives.
The surgery only lasted a couple hours. She had a duodenal web and we were playing the waiting game to see if there were going to be anymore blocks or complications. Her breathing machine was added to the other alarms we'd gotten used to. It was the scariest, but its alarm meant she was trying to breath on her own. She fought it and was cleared of it that same night. She couldn't eat until she had a real bowel movement. I sat in her room trying to all that I could to be a part of her cares. We silently worried as we watched her weight dropped. She'd show her fiesty side by pulling out her tube or her UV mask down. We were allowed a few hours of holding her, but had to keep her under the lights mostly to fight jaundice. It was an emotional roller coaster. My husband avoided the hallways after seeing a nurse leave another baby's room crying.
A nurse advocated to give her some Pedialyte a week after surgery. That did the trick. I had never been so excited for poop. By the next day we were cleared to feed her 5 ml of breastmilk every 3 hours. The milestones came from there slowly increasing her food intake. I remember the shock after preparing ourselves for a few months stay minimum to going home after only 19 days.
We know now just how fortunate we are and just how many stories don't get happy new beginnings. They prepared us every step of the way for what complications they were watching for, but Anna had none of them. She has thrived and jumped to the top of the growth charts. We'll celebrate her 2nd birthday this weekend with only occasional checkups and a scar left from her eventful entrance into our lives. She loves "Mimi" (Minnie Mouse), "kickers" (stickers) and has become an amazing big sister to her new little brother, Jackson.
What has amazed me after our experience is just how many people we know that have wound up with NICU beginnings. I worried alot when I got pregnant with Jack. My husband and I held our breath throw his ultrasound and prepared for him to make an early entrance (he did not). It has taught us to be patiet and grateful, and to hope for good outcomes for any baby that finds its beginning to involve the NICU.