We left for the NICU much earlier than usual, hoping to get there before shift change so we could talk to the nurses and doctors on staff overnight. When we walked in one of the nurses we had come to know, Heather, saw my face and just immediately apologized. She, too, was so hopeful Della was on the upside. “I’m so sorry, that is NOT how any of us wanted her night to go. Rest assured, she’s pain free right now, and I’m glad you got to nurse her last night!” Hearing her words, my voice broke. “I’m so scared that will be the first and last time..” She cut me off with a hug and whispered reassurance. She was the only person who heard my fears that day. I didn’t say a single word to anyone else about it. In a sense I felt some relief, but I also didn’t want to even put those thoughts out into the universe. I had held it together so well until this day, but the hopelessness persisted. It was as if she had slipped under the surface of the sea and I was pulling at the water frantically trying to get her back.
Della’s body was covered in pokes. Heather and the nurses had worked hard to get an IV placed so she could have some pain relief through the whole ordeal. Seeing her battered little body with dozens of small spots of dried blood broke my heart. But I was also grateful. The thought of her without pain relief was too much to bear. She was so still, peacefully sleeping and working to recover. We let her rest and headed home, and for the first time since delivery, I can admit that the “fake it till you make it” approach was not going well that day. I was determined to be as close to 100% as I could be from the moment I saw her gasping for air. But this day, I was more like 20%. I was breathing and my heart was beating, but I couldn’t eat, couldn’t think, could barely walk, and I couldn’t be the mother my girls needed me to be. Thoughts of a tiny coffin plagued my mind and I could not shake it.
I had been praying for Della everyday. But for the first time in a long time, I also prayed for myself. I went from asking God to save my baby to saying that if he must take her to please save me. Help me be the mother my girls needed and deserved because I wasn’t sure I could be. The doctors and nurses were so level headed and reassuring, even my husband seemed to retain positivity and hold onto hope. Yet I was in utter despair.
Nobody knew how dark things had gotten for me, and I just tried to focus on being the best I could be for the next 15 minutes, taking each day 15 minutes at a time. Soon it became easier, I saw glimpses of improvement as Della’s oxygen requirements weaned and her strength improved. Instead of frantically reaching for my baby below the surface we were together again, not yet safe but at least treading water, breathing air.
We had talked to Dr. Rubner about what this meant for Della and what the next steps looked like. The further we got past day 7 the more anxious I became. He told us if they couldn’t successfully remove the chest tube by day 10 she would need to be transferred to Children’s where her care would be escalated. Day 10 was our goal.
At home, my brother and my future sister-in-law had taken off work for two weeks to stay with us and help care for our older girls. While we initially planned their visit to help us transition from 2 to 3 kids post-partum, their presence during this time was invaluable. Their support went beyond childcare, it was like we could come home from our NICU nights and they could take some of the trauma away in real time. We talked everyday, laughed even, reminisced about the girls’ antics, daydreamed about Della’s future, all while eating some delicious comfort food they had prepared. Their support during this time literally changed our lives. It would have been MUCH more difficult to go through those first two weeks without them.
As day 10 loomed, I started to feel hope coming back. I was less reliant on pain medication by now, eating more consistently, and showing up at 100% even if I didn’t totally feel it. Della had been making great strides, passing all her tests, weaning on her oxygen needs right on track. We had a plan in place, they would remove her chest tube on Day 10 and she would be closely monitored for 24 hours. Once again we were back in the precarious position of being immeasurably hopeful and completely terrified at the same time. She got her second chest tube out and it felt like I was holding my breath for the next 12 hours.
The next morning things shifted, the nurses started talking about something we had yet to even consider…. the plan for home. I became obsessed with Della’s status. Every drop in spO2 triggered immediate anxiety. I watched everything with an eagle eye, scared I would miss some red flag that could be cause for concern. Everyone around us seemed almost joyous, but I couldn’t let myself go there yet. I was still holding my baby for dear life in the cold, crushing waves. And I wasn’t about to let my guard down for a single second.
On day 12 they did an oxygen test, how long could Della go without any oxygen support before her stats dropped too low? At 11:00 they removed her nasal cannula. And she was breathing room air on her own for the first time in 12 days. And I don’t think I even let myself blink. I watched her chest rising and her spO2 reading falling at the same time for 37 minutes. At 37 minutes I couldn’t take it anymore, I went to find the nurses who were watching her stats on their own monitors and I remember telling Donna “If you’re not panicking then I’ll try to also not panic but I just want to let you know that I’m really panicking.” She smiled knowingly at me and went to hook my baby back up to the oxygen tank.
Della was drinking full bottles, maintaining her stats on home oxygen, had clear looking x-rays, and no longer required pain meds. All these results combined meant she could be on her way home in 24 hours. “Looks like you’re breaking outta here!” Donna said to me in a thick east coast accent with a beaming smile. Hearing those words literally stopped me in my tracks. Were we actually going home with our baby? If this was true it meant I could stand up right? I wasn’t treading water while holding onto my baby for dear life anymore, maybe we had reached the shore and I could just stand up?
That afternoon I cautiously started to let myself consider that we really might be bringing our baby home tomorrow. I quietly started to check the nursery, ensure everything was stocked, wash bottles one more time, pick out an outfit, etc. I had heard too many stories of parents thinking they’d be bringing their NICU baby home only for things to turn at the last minute. So while I started to prep I still wasn’t convinced.
Day 13 we woke up and to my shock we did not get a call from the NICU overnight! I was genuinely expecting it. It felt like the sun had come out for the first time that morning. Even as I tried to keep it composed, my excitement and anticipation rose. Walking into the NICU that day I kept my focus on Della, I couldn’t look the nurses in the eye for fear that I’d see something other than confidence about sending her home. Even as we got her loaded into the car seat I was still only cautiously optimistic. Walking out of the hospital I expected the nurses to stop us! We got a few steps from the truck when Jake said to me “Quick get in before they change their minds”.
We snapped a quick pic of Della in the truck before driving away and that was that. I sent the text my friends and family had been waiting for as soon as we got to the house. “Little Della is officially home!!!!!” After 13 days, our family was finally whole.
What followed was weeks and months of pure, happy chaos. Moments of overwhelming, full-hearted love coupled with intense NICU flashbacks and intrusive thoughts. Post-partum is a wild ride, and life after the NICU is even wilder. It took me months to even find the words to describe what happened. Even now, 5 months later, I still struggle with random moments of sadness. But if you’re in the thick of it, post-partum with a medically fragile baby, just know that it does get easier. Moments of sadness go from all consuming to brief and easy to shake. Getting through intrusive thoughts is possible. And you do NOT have to shrink the vastness of your experience for the comfort of others. Be kind to yourself and know that your partner is experiencing his or her own version of the same trauma. And processing that trauma will look different for you both. But don’t be afraid to communicate, and try not to take anything personally. If you need to yell at someone or scream or cry uncontrollably, text another mom friend, message me if you want, but don’t make any permanent life changes during a traumatic, yet temporary moment in time.
This is a beautiful piece of writing Heidi!! As a NICU nurse, I’m so glad I read this. Thank you for sharing!! And congratulations on having your beautiful family of 5 all together!!❤️