Bummer at the BPD Clinic

Today we met Henry’s pulmonologist for the first time, hopeful that after assessing our baby and reviewing his case some finding would lead to an “aha” moment and we could finally point to why our child is struggling and specific ways to help him.

The doctor tried to cushion the disappointing news by prefacing with, “The first year is the hardest.” Each new point felt like one blow after another until my ears rang in my head. I could see her lips moving but no sound, so I had to concentrate to make any sense of it.

My mind was too busy coming to grips with the idea that these doctors are just as lost as we are about what’s going on with Baby Henry, and this wasn’t going to resolve in a few weeks or even months. It will be years, to start… “Into adulthood,” the doctor said. 

Here is what the doctor shared: 

• Baby needs to be on that inhaler medication for a long while to give his lungs more time to grow. 
• More medication. Might help with acid reflux or it may not work at all. Try a few until we find one that works. 
• Ordering a Swallow study to detect aspiration and feeding difficulties. 
• Depending on swallow study results, may have to thicken feeds. That’s a whole other thing. 
• Depending on swallow study results, if oral aversion is developing we may need G-tube surgery and tube feed him longer term at least 6-12 months. Baby seems a little young for it. 
• Escalating appointment with GI specialist to tackle why he vomits so much. Will need to go to Salt Lake. 
• Depending on swallow study results and/or GI findings, they want updated X-rays. 
• Ordering an overnight pulse oximeter study because his weight was kind of low. Never mind that it’s possibly low from us experimenting with his feeds and formula very recently. They want to see his oxygen levels at night and make sure it isn’t negatively impacting his growth. This study requires me to pick up and later drop off the materials to the home health care place, then follow up with the specialist office to have them check results. 
• Pulmonologist says we need to come back to the BPD clinic at least 1-2x per year for the next 5+ years. 

I knew I was running a proverbial marathon, but this is several ultramarathons back to back to back. High risk difficult pregnancy, traumatic early labor and delivery, a super long NICU stay, months of a newborn schedule and tube feeds at home… and somehow the stakes just keep growing.

I thought we’d find relief by now. Looks like more hospital and doctor visits in our future. Instead of removing some things from our regimen and care plan, we are adding even more. Jer and I felt the light at the end of the “burned out parents” tunnel fade. 

In-N-Out on the way home cheered us up with burgers, fries, and even a shake. A cup of drinkable ice cream seemed just the thing to handle our utterly defeat. 

These hospital trips take such preparation and effort. We adjusted the feedings for Baby to leave in the early morning hours and make that drive in the morning rush to arrive on time. Earlier this week my friend was in a giant major accident on the freeway with a semi truck and multiple car pileup. She is fighting for her life, and if she pulls through will have an extremely long and difficult recovery. That shakes me up in a way that I tensed up every time a semi truck drove next to me.

Thankfully Jer took the day off to help me stay awake while driving, and helped feed baby on the go during our appointment. Coming to the hospital on time and completing our visit felt like such an accomplishment when we have so little to give right now.

Realizing we’d need to repeat this trip and give this same effort consistently, but most of it by myself, was mentally and physically and emotionally exhausting. I am barely holding it together and scared at the prospect of having to keep life up at this level for even longer.

Maybe all of those measures are just what’s needed to move forward to Baby’s getting off his ng tube, and I’m just tiring out so it’s coming out as me whining. I don’t want to do this any longer than we have to. I want answers to these feeding issues. I want to enjoy my baby without all of these disruptions and extra trips- is all of it really necessary?

To end on a positive note, we tried out the portable bottle warmer and it worked well! 

Love, Kat