The days here at the hospital seem to follow a pretty consistent up and down roller coaster pattern, and today has been one of those days. It started out great, with an update from Layla’s nurse that she had made good progress eating from the bottle overnight with minimal puking. Poor girl is trying to learn to eat while detoxing from all the narcotics she’s been on through ECMO and surgery. She’s like a baby heroin addict, complete with baby doses of methadone to help her through withdrawal symptoms.
But as soon as we showed up at her crib side this morning, the nurse said she’s been switched to formula given by feeding tube. My heart started racing and the temperature of my blood began to rise as I asked why my baby was being given formula when I had boxes of pumped breast milk in the freezer there with her name on it. She went and got a doctor to explain that Layla’s lymph system had suffered some temporary damage from the surgery, and the fat from my milk was leaking into her chest cavity and visible by the cloudy fluid in her chest drains. They needed to switch her to a low fat diet until her lymph system heals, which could take a few weeks. The lowfat formula tastes terrible, and she wouldn’t drink it from the bottle, so it had to go by feeding tube. Upset doesn’t come close to describing the sinking disappointment and frustration I felt.
If anyone knows me, they know how important natural, real nutrition is to me, and how much that influenced my desire to breastfeed this time around. I was dreading everything about it, but felt so strongly it was the best thing for Layla, and one of the only things I could do for her as we gave up her care to the hospital staff as they worked through her heart repair. It was the thing that motivated me and got me through these long and dreadful hours. Pumping breast milk, as much as it sucked, always made me feel like I had some small shred of control in this situation. Seeing that syringe of highly processed frankenfood milk product going into my baby via a tube in her nose made my heart sink, and set my day off to where I just wanted to punch everyone. The next time I went up to the lactation room to pump, I wanted to throw my supplies at the wall. WHATS THE POINT?!?!
Everything I had learned about holistic health and nutrition and done to have a healthy pregnancy and baby had been pointless. I had a baby with a birth defect, both of us have required antibiotics in the last few weeks, she’s required a list a mile long of unnatural interventions (life-saving, of course), and now she can’t even eat what nature intended. I’m completely out of control in this whole situation and I hate it. The one thing I thought I controlled was being pried from my stiff grip. And I get it – it’s all part of getting her healthy but all goes against my intentions and best laid plans for a healthy natural life for Layla.
But I didn’t give up – I grasped for what I could, asking if there was a way to strain the fat from my breast milk so she could drink that instead? The doctor said it was a possibility to try and set me up with the lactation consultant to go over the process. Guess what? It’s more work for me. But damn if I’m going to put all this time into pumping the liquid gold for her, I can take the extra steps to remove what she can’t use right now and give her the best that she can. I hope it works – the doctor said it doesn’t always but we can try.
So I’m hanging on tightly to that last little shred of control that maybe I’ve tricked myself into thinking I have through this ordeal, but also realizing that it’s an ongoing lesson for me. I think I’ve learned it, and that my patience and trust has been tested plenty. But I have to keep loosening my grip as each day goes by in order to bring my baby girl home safe and healthy someday. I have to let go to gain. And it’s the hardest thing to learn.
P.S. – I vent my frustrations also knowing that there are many parents in far more frustrating situations where their control was taken long, long ago or they are even further removed from their child’s care. Some people can’t hold their children and some can’t speak on their child’s behalf for various and wide-ranging reasons. And I am beyond grateful that we are at this point in Layla’s special heart journey – rather than a week and a half ago when we thought the journey might have ended devastatingly soon. I’m so thankful the progress she’s made. I’m just tired. Tired of the process and tired of being what feels like a “pretend mom” after nine months of miserable pregnancy. I’m so ready to be Layla’s everything, and can’t wait till she’s home with us to start that journey together.