When Your Baby Aspirates

I missed the phone call. The voicemail made my heart drop. The NICU nurse called to say my baby was stable, but I needed to call back. Thankfully we only got this call once during his 39-day NICU stay. Once was more than enough.

Griffin had turned blue during his bottle feed that evening. In some ways, I’m glad I wasn’t there. I’m glad they saw it and knew what was going on. They knew what to do. He was immediately put back completely on tube feeds. We’d only been feeding him orally for a week.

An ENT came over from the children’s hospital to scope him. We learned that Griffin had reflux and laryngomalacia (a floppy airway). He was put on medications to calm the inflammation in his throat. We spent more than a week waiting on that. It was hard to go to the hospital everyday with no hope of progress.

When we were finally able to try another oral feed, the feeding therapist came and mixed up him bottle. She added pureed banana as a thickener. Because of his age, that was the only option. I got to feed him that bottle. I watched him turn pale and blue as he choked on his milk and it went into his lungs. It was horrible.

The next day we sat down with the doctors and decided a more permanent feeding tube was the best option. Griffin was transported to his third hospital where they would be able to place his gastrostomy tube. After 39 days in the NICU, we were able to take him home.

That was just the beginning of his journey. He spent nearly three months unable to take anything by mouth. We SLOWLY introduced thickened, fortified breast milk. He had to eat laying sideways so the milk slowly went into his mouth and not straight to the back of his throat. We gradually thinned the milk down with the help of a feeding therapist until a follow-up swallow study showed that he was still at risk for aspirating what we were feeding him.

We switched thickener when he turned one, and that was amazing. We no longer had to somehow heat up his milk when we were away from home. It instantly thickened liquids! The things you get excited about when your child has medical needs.

After the scariest experience of my life when Griffin choked on a cracker at 14 months, we ended up being extra careful and going to extra appointments. He was nearly two before he was finally cleared to have thin liquids. It was a day I thought would never come, even though it all lasted less than two years.

Griffin’s aspirating meant a lot of things. A lot of change. A lot of stress. A lot of learning. Here’s a little insight into what my aspirating baby meant for me:

• It meant so many hours of pumping.
• It meant buying a giant deep freezer to store more milk.
• It meant going all in with a binki when I had planned on getting by without it because the binki helped exercise his sucking reflex.
• It meant being tied to a medical pole or backpack more than half of the day.
• It meant deliveries of medical supplies every month.
• It meant always having an emergency g-tube kit with us at all times.

• It meant trying to sponge out his mouth every day. Attempting to keep him used to things in his mouth without traumatizing him.
• It meant caring less what others thought.
• It meant a baby who basically slept through the night from day one.
• It meant delaying tummy time and babywearing until his stoma healed.
• It meant altering clothes or buying ones that worked better with his tube.
• It meant learning sympathy for others.
• It meant pure excitement when we could finally trial 15 ml of fortified and thickened breast milk.

• It meant having to get a doctor’s okay to feed my baby his first taste of banana.
• It meant finally giving up on breastfeeding when my toddler’s needs overpowered the need for breast milk over formula.
• It meant worrying about how much thin liquid was in watermelon.
• It meant no ice cream for my toddler. No Otter Pops.
• It meant making a complicated concoction of breast milk, formula, and thickener for each bottle.
• It meant weigh-ins every other week.
• It meant in-home nursing visits and feeding therapy.
• It meant new worries about sicknesses, power outages, and emergency preparedness kits.
• It meant spending an hour every night washing bottles, syringes, lids, extension tubes, and pumping accessories.
• It meant doing multiple drip tests while trying to calm a hungry baby.

• It meant math. Lots of math. To calculate rates and calories and whether I had to supplement even more for the day.
• It meant waking up to alarms in the middle of the night instead of a crying baby.
• It meant systematically thawing breast milk to make sure it was always fresh and safe.
• It meant making extensive lists of information and giving demonstrations to babysitters.
• It meant at-home oxygen studies.
• It meant a month of supplemental oxygen whenever he slept.
• It meant throat surgery for his laryngomalacia.
• It meant worrying about putting a rolling baby in his crib hooked up to a tube.
• It meant trying to calm my toddler and get him to drink his milk while he sat in a machine for his swallow study.

• It meant consistently taking a feeding pump, extension tubes, syringes, thawed breast milk, supplemental formula, and a spare g-tube button everywhere we went.
• It meant learning how much we could handle.
• It meant learning to speak up and fighting for my son.
• It meant gaining gratitude for all the things that were going well.
• It meant answering the phone to unknown numbers and making numberless phone calls even when it terrified me.
• It meant accepting help, especially when it came to babysitting for my toddler.
• It means I watch my nearly three-year-old running around, eating normally, and talking up a storm, and I’m amazed at how far he has come.

I honestly hadn’t heard much about aspirating before Griffin did. I had no idea there was such a thing as thickener. I didn’t know some babies needed to be fed entirely by tube outside of the hospital. I’d never heard of a g-tube or a swallow study. Our story with aspirating and feeding tubes was short and turned out so well. Looking back, it’s hard to believe we really went through all that we did.

If you are on a similar journey, please know you are not alone. There are so many good things, and you can learn so much. You never know how much you can do or handle until it’s the only choice you have. I’m proud of all we went through and amazed at how strong I felt despite feeling so overwhelmed.