Luca was born at 26 weeks, 5 days. We were permitted to see our newborn briefly after his birth, once all life-sustaining equipment had been placed. Our baby was thirteen weeks premature and out of my womb. We weren’t even thinking about his homecoming. His skin, taunt and red, stretched over his body as though it couldn’t hold the contents of his form. His bony chest, inflated by mechanically ventilated breaths, rolled in shallow yet deliberate jerks. Protruding ribs contracted with each movement. His eyes shut, veined translucent wings, pink from the glow of operating lights. His hands, soft pebbles you could grasp with the tip of your finger. He was smaller than we could ever believe and fragile in the most frightening manner, but he was here.
We were in the NICU for a total 151 days. Luca had a unique respiratory course that extended our stay. He was extubated at one week of life and everyone anticipated that he would fly. We were told we may even be home before his due date. He proceeded to go on and off CPAP, High Flow, Low Flow, and Micro-Flow for the duration of his stay. He often appeared fine but his blood gas labs would return with alarmingly high carbon dioxide levels. Luca grew on my pumped breastmilk and quickly acquired the nick name “chubadub”. As we approached his due date, there was talk of a tracheotomy which several of his nurses and I dismissed. He was so stable, healthy, and engaged. No one could accept that he may need that intervention. I purposefully skipped information on “common surgeries” while educating myself on prematurity. I took in what I needed and left the rest. The terror of having a premature baby in the NICU was enough and I didn’t want to push my personal boundaries of sanity. I began opening to that reality by early September when Luca was struggling to breastfeed. We moved forward with surgery for a gastrostomy tube (G-Tube) for nutrition purposes. He could suck and swallow but breathing at the same time proved too difficult.
By late September he continued to struggle, our primary nurse gave us “the talk”, with tears and emotion: “I have watched you fight for this baby for four months. It’s time.” The implication was that a tracheotomy would remove that battle. I would no longer have to will him to breathe, live in fear that he wouldn’t be able to do it, and resent myself for wishing that he could. It was a day of weeping and mourning for the hope that we could bring our son home without a trach. We had been told that a trach is “a game changer” and it will “turn your life upside down”. A trached/ventilator dependent baby requires near round the clock homecare nursing. You don’t go home alone to nest as a family after the exhaustion of an early birth and hospitalization. In essence, you bring the hospital with you.
Luca had tracheostomy surgery on October 2nd and we were discharged with 24-hour home nursing care on November 5th. Respiratory wise, it was a difficult transition for Luca and there were some terrifying moments of resuscitating him (“bagging him”), but he quickly grew fond of his new environment and flourished. The losses were many but having our baby home trumped it all. Somehow the upheaval of medical equipment and nursing staff in our house became our norm. I breastfed him trach and vented for half a year. We taught him how to roll and sit up with circuit tubing coming out of his neck. He learned how to bottle and eat baby food connected to a ventilator. We wheeled an IV pole full of equipment around the house since he was ALWAYS attached to it. We developed meaningful relationships with many of our nurses. We created a normal for our family in spite of it all.
I would not have known it was possible at the start of the journey, but I suppose anything is, which has been the greatest lesson gleaned from our son’s path. There have been several harrowing moments including one life threatening procedural complication, but our warrior prevails! It is 19 months later and Luca no longer has a trach or a G-Tube. He is unattached for the first time in his life; he is truly free.
10 tips for families that will be discharged home with nursing care
and/or medical equipment:
- Attend all educational trainings on your child’s condition and equipment that you possibly can. Seek out more instruction whenever needed. You want to, and have to, know how to care for your child’s special needs. It will reduce your anxiety and empower you as a parent.
- Develop a relationship with your childs DME (durable medical equipment) supplier. Become informed on their policies, hours, and have their contact information accessible.
- Have your emergency plan and home address posted throughout the house JUST IN CASE.
- Establish house rules for your nursing staff. Post those house rules! This reduces resentment and misunderstandings. Empower yourself to allow them to do their job while honoring your wishes, needs, and values as a family.
- Confront undesirable staff behaviors immediately. Do not “let it go” if it is meaningful and impacts your child’s health. This can be challenging but is absolutely necessary. (I don’t mean to sound condescending because I struggled with this too at times)
- Know that you can fire any nurse. It may mean less coverage for you but it is ALWAYS your right.
- Get to know your nurses. Be kind, courteous, and interested in them as people. You will spend a lot of time together, through the good and the bad.
- Continue to advocate, advocate, advocate: a skill many of us have honed to perfection through our NICU experiences with multiple providers.
- Expect and normalize feeling overwhelmed, grief striken, alienated, and angry. Take breaks. Get out of the house. Do not compare your experience to that of others – it’s a trap!
- Focus on the gift of having your baby home. Recognize the beauty of being able to raise them in a house, not an Intensive Care Unit, despite their medical needs. Not long ago this was not an option for families.