“How’s his breathing? Does that stoma look ok? How many hours has he been off the pump and when do I need to get him back on? Does he look blotchy? Are his lips dusky? Why is this diaper so heavy?”
All those questions, and then some, would rattle in my mind when I looked at my son during the deep days of our medical journey. For over a year, we went through monthly hospital stays for aspiration pnuemonia, 22-hour/day jejunal tube feeds, and absolutely zero by mouth. I was seeing my son as a “case,” a patient, a never-ending situation to manage and keep safe and alive. I buried the sadness of the loss of feeding under a pragmatic “If he eats orally, he could die,” and marched onward. My bonding became medicalized, as did my thoughts.
Losing the ability to feed your baby, whether you had planned nursing or snuggling with a bottle, is heartbreakingly hard. However, we can still bond and share togetherness around feeding – by broadening the definition of “feeding” to “proving nutrition so our baby can thrive.”
Here are a few suggestions for connecting around feeding:
Snuggle with your child during a tube feed.
Have your baby with you when you eat. If they are safe to try tastes, playfully and gently offer something on your finger. Whipped cream, water, breast milk: offer it as a joyful gift from you to your baby, no expectations.
Ask about tube-feeding on cue: starting when a baby shows hunger, stopping when they seem full. This allows for that feeding conversation to develop, even before any oral intake.
Approach your team for assistance in changing a feeding schedule so it is comfortable for your baby and for you. Sometimes teams forget to move older kids off of a newborn schedule.
For older babies, start to name the tube feeds as mealtime names: “It’s time for your tubie breakfast!” This helps create a family mealtime rhythm and normalizes tube-feeds by the use of mealtime language, rather than medical language.
If tube-feeding is distressing or causing vomiting, speak with your team and insist that they help you problem-solve. Sometimes less volume via tube leads to more food staying down as vomiting is eliminated or reduced, or you can try a different formula, schedule, delivery method, medication, caloric density.
Of course, sometimes tube feeding isn’t as straightforward as we would like. This is particularly true when your child faces a number of medical complexities. But even if that’s the situation you’re walking through, there are still a lot of ways you can bond with your child.
Find ways of physical contact.
Use all of your senses to connect: sight, hearing, touch, smell.
Create moments where you consciously set aside any thoughts about their medical situation while you are with your little one.
Go out and do the things you had dreamt of doing or did with your baby’s siblings: head to the park, visit family, have a picnic, go to the zoo. Reclaim that part of your vision and make it real.
And in all of this, never forget that you matter, too! Practice self-care in some (or all) of these wonderful ways!
Reach out for help with grief and trauma from a trauma-informed counselor or clergy. What you’ve gone through is valid, and it’s absolutely okay to acknowledge the loss that you feel.
If you find certain situations too painful, such as PEPS groups or even the baby food aisle, know that it is okay to avoid them.
Make some time for you, even if it just means getting coffee at the hospital Starbucks or spending a few minutes chatting with a favorite nurse.
Find a quote or verse that speaks to you, and keep it close. This one was my support during a time of not knowing and no diagnosis to explain my son’s issues: “All things are possible until they are proved impossible - and even the impossible may only be so, as of now.” – Pearl S. Buck
In all, I’d mostly remind you that, even when parenthood doesn’t look like a dream, there are still wonderful and beautiful ways to bond and connect with your little one. All is not lost! And you, caregiver, are never alone!
Olga Owens, JD, Lead Parent Coach