Feeding Issues

Setbacks

Just last week Baby Henry was taking over 33% of his feeds without vomiting issues, but things have changed. The formula is almost exactly the same but after increasing the fortification with this “slightly different should be the same” formula he’s back to projectile vomiting daily. His bottle intake is diminishing.

Baby hasn’t done well eating. If he eats it’s very little and Goldilocks. Too hot. Too cold. Too late. Too much.

He randomly SCREAMS in what sounds like pain through the gavage. I try to hold him through it, pause the feed to rub his back and see if he will release air, comfort him through the crying.

Thickener

I’m ok, but I’m also not ok. Friday we went to a feeding therapy appointment. The feeding therapist had asked if we wanted to start trialing using thickener for his feeds, and I started crying. I told her that at this moment I’m not in a position to make a decision or to add another thing right now.

She demonstrated preparing the thickener to me anyway. It’s heat activated and there’s a certain consistency it needs to be sticking to the sides but also able to flow through a level 2 nipple.

Baby wasn’t hungry and kept spitting the thickened milk out after trying, but the feeding therapist said he was physically safe with it.

She suggested that we pick only a few times a day to feed him by bottle and all the rest gavage him. “I know that’s not what you want to hear or do, but it may be less stressful on everyone,” she said.

Of course that’s not what I want to hear, and definitely not what I’m going to do. That would mean less oral feedings. More feeding tube time. More chances of Baby becoming tube dependent and needing a g-tube in 6 months and this being our life for years.

Flagged

They pulled me aside because that postpartum depression survey got flagged for self harm. Whatever. I had answered all the suicide ones with No, so I don’t know why I had to spell out that I’m not going to off myself. They wanted to connect me with “resources” and report to a social worker, and I told them No there’s nothing they can do. Adding a support group or telling me to get some rest is not going to change my son’s challenges right now or give me more sleep.

I understand why they “look out for you” but being on the receiving end of it really feels hollow. Like, yes we can both be aware of my downward spiral but now what? Nothing changes. “Contact your doctor.” What do you do when you don’t even trust that? I’ve lost my faith in most doctors at this point.

The printout they gave me in response to my survey being flagged seemed tone deaf and even more enraging. Something like “a TON of people deal with perinatal mental and emotional whatever, but only 15% are treated” Why I would seek treatment that’s useless …. “Here’s a QR code for resources!!” What kind of tools and solutions do you have for us? Just your good old regular “get sleep, eat healthy, go outside, make time for yourself, ask for help, talk with someone”. YES those sound like the right answers, but there’s no HOW. There’s a disconnect.

How do you do any of that when you’re not sleeping or eating or able to get time for yourself because you’re doing 7am appointments hours away and interrupting the feeding schedule and making the baby cry every day with giving him medications or shoving tubes down his throat? Can anyone step in and do those things for you? No. The baby needs to eat. The feeding never stops even if it’s all vomited out. No one is coming, you are it, you hold the line. I have no choice but to run myself into a ragged cycle even with more help and prayers than I’ve ever asked for or deserve.

Sometimes I just want to scream as loud as I can out into the void. I have a lot of pent up rage slowly leaking out as I go about this medical journey. I’m coming to terms with our doctors and specialists not knowing how to help us, and our increasing workload in this trial and error process. I have very little control in our situation. It’s been an ongoing stress fest for over 6 months. My sleep deprivation is coming out as something like Attitude and contemptuous. I’m not surprised at my worsening mental health; I see it and I let myself feel the feelings and I accept it so I can let it go. I notice how uncomfortable other people are with my being honest or open, even professionals. I want them to do their jobs, and if they fail we all fail and I’d like them to feel the results of that.

I told the feeding therapist that it’s ok, I’m just having a day. How sick that I have to comfort other people when it comes to my depression. I got myself a burrito on the way home, since I hadn’t eaten a single thing that day.

Our dietician is ok with us going back to 22cal until Tuesday, and back to breastmilk if Baby doesn’t do well on the 22cal either over the weekend.

I hope I’ll have something better to report later. I may be nearing the end of my abilities, succumbing to hopelessness and fatigue.