We Are the Only Friends We Have
no one advocates for you like you do
Piebald is playing here next week, and that’s exciting, hence the title. But also somewhat relevant! Anyway, onto business.
What a week. We’ve just spent 5 days in the hospital with our little pal, and it has been a difficult, stressful, and emotional experience. Things are good now, we’re back home and with a plan to keep things going on the right track. Hooray! Long story short: 6 weeks in and he still wasn’t at his birth weight, so our pediatrician referred us to the pediatric ER, and we’d been in the progressive pediatric care unit ever since, getting a lot of tests done, vitals taken, and working with all the teams here to develop and follow and aggressive but ultimately effective feeding plan that bumps up the calories the little one is getting.
A side note, “failure to thrive” is a wonderful term that absolutely does not feel like a punch to the gut.
I have enormous respect for all the medical professionals out there. It’s a super difficult job, and they are as a rule overworked, underpaid, and often disrespected. I couldn’t do it. For the most part, the whole team there did so much to help us out, and keep us sane and answer our questions. Shout out to the University of Maryland Medical Center’s various teams who all worked with us to figure out what we needed to do to get our guy back on track.
The health industry however is so, so very frustrating to deal with when you’re a patient or a parent of a patient.
I think most people in a hospital are stressed. Why wouldn’t they be? When you end up here, there’s something wrong, and it’s unknown and scary. Add to that when the issue is not in you, but someone you love who is unable to articulate problems in any meaningful way, and the fear and stress and confusion ramps up a hundred-fold.
Obviously medical technology has come a long way. Tools like Epic and MyChart are amazing for allowing patients to communicate with their healthcare providers, see their own records, and just generally be more involved with and knowledgeable about their care. That’s awesome! I love it.
Knowing the ease of access to information, at least from a patient perspective, makes it so confusing and frustrating when your medical team doesn’t seem to be on the same page, or even communicating with each other. Aside from having to relay the same details to a dozen different doctors as we were admitted, the day nurse having a different, sometimes contradictory story about what was happening with his care from the just-departed night nurse left my head spinning. Of course, things happen fast, plans change based on test results and progress made, and maybe that’s obvious from their perspective. But I’m just a panicked dad sleeping when I can on an uncomfortable leather chair in a hospital room1. If things are bad, I need to know. If things are good, I need to know. If things are changing, I need to know why, so I don’t assume it’s the first thing and worry even more.
It became critically important to very quickly find a voice that asked the questions, and pushed for reasons and information. Many of the doctors we met with at first seemed very willing to just disregard breastfeeding as an option, pushing us straight to a strictly formula-in-bottle diet. I trust doctors and science. What I don’t like is not understanding why something is needed or recommended. So we asked questions, and in the end, the GI and nutritional teams agreed that yes, the plan going forward would still lean heavily on breastfeeding and expressed milk, fortifying or supplementing with formula as needed. Great! It just took some forceful, repeated stating that yes, this was important to us. He gets the nutrition he needs, while not losing the well-documented benefits of breastmilk and the emotional closeness provided by breastfeeding.
Of course the whole thing was also emotional in ways that are not their fault or responsibility, and the heady mix of these feelings could have made my own reactions worse. You get sent to a pediatric care unit, you get told your kid is basically malnourished, and you can’t help but feel like the biggest failure in the world. How could I have let this happen? you ask, over and over. The mind spirals, and you think things like, is someone going to call CPS on us? Are we going to be deemed unfit parents? Are we unfit parents? I try to stay generally fairly positive and optimistic, but I can’t deny the dark thoughts that rise up. Again, credit goes to the PPCU team for never letting that overwhelm us, and making sure they saw that we’re good parents just trying to navigate very new, uncharted waters for us the best we can.
At any rate, we’re back home now. The cats are thrilled to have us back (and on a more normal feeding schedule, sorry little pals). There’s obviously still things to do—follow-up visits, monitoring, etc.—but everyone seemed really pleased with the progress and the plan for the future. I guess it’s a rite of passage for new parents to have to navigate health questions, but boy do I hate it. I’m sure this is the last time it’ll happen and the next 18 years will be smooth sailing. Right?
Out Of the ER, Into the Pit
I’ll share today a playlist I had made to play for the little trooper while in the womb. The literature suggests that babies after a certain point in development can hear and react to sounds and music played for them, and I had to make sure our little bundle of joy knew and appreciated riffs, breakdowns, and calls for the mosh. Sadly, he does not appear to care about my music; I have several pictures of him reacting less-than-favorably to things like Polar Bear Club, the Suicide File, Fraud, and more. At least he liked Trapped Under Ice, like a true Baltimorean. There’s hope for him yet.
The shower recalled unpleasant memories of the shower stalls in the UMass dorms. Would not recommend, 0 stars.
I also would like to note that 1. I told you not to sleep in that chair! It's the worst!! hahah 2. On a more serious and more important note, it's so frustrating and overwhelming when people who are in the medical field don't trust or believe other people in the medical field. It really left me thinking 'this is clearly an issue with my son, I don't care if it's a controversial topic. If you don't think that it's the reason for his issue. Then please tell me what is! Instead of just being dismissive about what other professionals told us.'
I'd also like to add that we had a whole blood draw for no reason because one hand clearly didn't know what the other was doing and he ended up reaching his blood withdraw limit for the entire month and it caused issues trying to get the one test done again because of it.