How to Navigate Bringing a Medically Fragile Baby Home
Excitement and terror. Those two feelings were playing a heated game of Tug o’ war on my uncertain state of mind. Then, they met up with thankfulness and guilt, for a round of doubles. We were leaving the NICU. Why the battle of emotions? Here is how we have thus far navigated the struggles that accompany bringing home a fragile baby, during flu season.
No more goodbyes and counting the days until we will see the boys next; this week we got to go home! It happened so fast. During the weekend we trained how to insert and maintain Charlotte's NG tube on our own, and then, badda-bing, badda-boom, we were discharged! We gathered our belongings and walked straight out the door with baby girls in tow, just as I had imagined it from inside alcove #3553, for 47 days. It would have been all sunshine and roses too, if not for the previous day.
The baby didn't make it. I didn’t need to see the blotchy cheeks and tear-stained faces of family members to put it together; in the NICU you just listen to the beeps. Dings and alarms are frequent, but the beeps say it all. Loud and regular ones, are not a good sign. The atmosphere gets busy and quiet, and nurses don't make eye contact as frequently. Alone, I counted each hour pass as the continuous beeps accompanied my intervals of feeding and pumping throughout the night and into the early morning. With each passing hour the reality of Charlotte's fragility was slammed into my face. And then, it was silent. The fight was over.
After 47 days, my ID bracelets were cracked and faded; that morning, so was my morale. When I heard we would be discharged, I was excited, yet also terrified of leaving our safe, sterile environment. I wanted to hide from all germs by locking the door and drawing the shades. Fear is a fast moving vehicle isn’t is? This concern is not unjustified. Charlotte's heart defect has made her high risk. Her breathing is so labored, even catching a minor cold would be detrimental. She exerts all her energy taking those breathes and in turn can sparse stay awake, hence the feeding tube and her high-calorie fortification. She qualifies for a rare and expensive injection, limited to those whose lives would be endangered by getting sick. After witnessing a family lose a child, I can no longer afford the naïveté of what is at stake.
Simultaneously, I am overcome with both thankfulness and guilt. We have been upheld by the body of Christ so many times and in a multitude of ways throughout this season. God strategically placed people in the NICU to encourage us and remind us of His goodness. God used the people in our church to feed and care for my children, help build our home alongside my husband and care for me in my solitude with texts, messages, and lactation cookies. For every time you have heard someone criticize a congregation, remember this: our church community, which extends past the walls of MCC (our literal church), rallied on our behalf and put love into action.
With the kindness and assistance of our friends (old and new), and don't forget our incredible family members, we walked out of the Salem Hospital with our sanity, and that is why I am now burdened with guilt. We can’t have visitors. Not even the people I adore the most. Not the women who packed my clothes, not the men who painted our new walls. I have to close my doors to the same community that opened their hearts. For everyone who wants to lovingly cuddle our babies, I have to ask for an extension. Once Charlotte has had her heart surgery, and we are free and clear of flu season, I will eagerly invite them all into our home. Until then, this is how we have navigated the situation, protecting our child, keeping our loved ones close in heart, and their germs at a distance.
You cannot risk the wellbeing of your child. Your friends and family understand and support that, but they cannot understand what has not been explained. Communicating your situation is key. Apologize for the delay and request their understanding. Don't attempt to hideaway from those who will be your greatest chance of survival throughout the rest of your journey of adjustments. My greatest fear was offending my loved ones, so I have emphasized they not confuse our caution for lack of affection or gratitude.
Amidst the excitement of going home, the terror of our new medical vulnerability, the thankfulness of our support system, and the guilt of withholding visits, I have experienced an incredible occurrence: the power of love in action. We exited the NICU with two precious daughters, and a renewed, amplified, desire to join our community in being the hands and feet of Jesus. We are currently standing more firm, on the support system of those in our lives. My advice to anyone in a situation such as this: don't let fear convince you that you will be safer in seclusion. Let help come. Stay connected. Don't draw your blinds. Put a sign on your closed door, but wave from the window. The window will let light shine in now, and with it warmth and encouragment. Later, when life becomes more relaxed and babies more hardy, you will want to unlatch those doors, leave them yawning, and have your beautiful people close by, ready to celebrate these squishy, pink, wonderous blessings we call our children.
