Last night was the worst night of my life. I thought my son was going to die. And as many times as I’ve told myself that it’s ok, that when he has to go, he has to go, that every moment that we have with him is a gift, there is still no possible way to be ready for that actual moment. I see that clearly now. No matter how much I tell myself that he has an incurable disease, I will never, ever be ready to let my son go.
At around 6pm, he had a desaturation episode. His oxygenation dropped dramatically to the 60s. He responded to the typical gentle stimulation, increased oxygen, and other things that we have done in the past, and it seemed like our “routine” desaturations. After he’d recovered, he was lying in his incubator, and I was chatting with his nurse, when suddenly he became completely purple without warning. He was also not breathing nor making any effort to breathe. He then jerked his head to the side, extended his arms rigidly, and let out three short, sharp cries – like nothing I’ve heard him do before. The nurse hit the code button, because he wasn’t breathing at all. At the same time, I noticed that he was bleeding heavily from his umbilical stump. The nurse had me apply pressure while the code team assembled around us. By the time they had arrived, James was breathing again, and his oxygen saturation was coming up.
I stood to the side crying while they assessed him. Jim had gone home, so I’d called as soon as I could to tell him to come to the hospital.
I had no idea what had happened at that point, although his nurse said to the doctor that his behavior seemed “seizure-like.” I have since learned that seizures in newborns can be very difficult to distinguish based on just behavior, but when she said it, a lightbulb clicked on in my head. Yes, it did look like a seizure.
The next four hours were very long. At about 1030p, he was lying with Jim, and I noticed that his eyes started to drift and then fixed off to the side. At the same time, his oxygen level started to slowly drop. I jumped up, knowing that he was going to have another episode. At the time, we were thinking that these were central apnea episodes – when the brain doesn’t tell the body to breathe. If it was central apnea, James would likely continue to have the episodes and eventually die from them (there is no treatment). I took James from Jim and held him close to me, rocking him and crying, thinking that this could be it. James then had a more classic looking seizure. His body went rigid, and he started to vocalize over and over again.
There is no feeling like holding your newborn child, listening to him cry out, and having no idea how to help him. His oxygen levels fell – but not as low as previously. He turned dusky colored, but he continued to breathe this time. I rocked him and told him it was ok and that mommy and daddy loved him, and if it was time for him to, he could go – we would be ok. I wasn’t hysterical, but my heart was breaking into a million pieces.
Slowly, he started to come around. His color improved, and he relaxed in my arms.
The overnight neonatologist came, and we discussed options. Caffeine to possibly stimulate respirations (this can work in premature babies with apnea), phenobarbital if this behavior continued through the night, and possibly Lasix, in case his heart was playing any role in this.
He had 3 more episodes over the next 2 hours. His oxygenation stayed fairly steady during those, and he never developed apnea again. At 330am, they started a loading dose of phenobarbital.
I spent the night with him cradled in my arms in the recliner, his little body pressed up against mine. I talked to him and told him that if it was too much, he could go, and mommy and daddy would be fine. I kissed him and told him how much he is loved, how many people care about him, and that so many were thinking and praying for him every day. I smelled his hair and his little hands. I cupped him against me and told myself that when it was time, I would let him go – and that somehow I would get up and go on with my life.
We slept together comfortably in that recliner for a couple of hours, and it was the most peaceful 2 hours of the last week.
Today, he has rested quietly. He has not had any further desaturation episodes, he has been calm, and he has not had any further seizures.
Every day, I struggle with when it is time to take him home. I want more than anything to be home with him and my girls and Jim. To snuggle on the couch, to sleep with him in the cosleeper next to me, to have him with us at home – away from the fluorescent lights, beeping machines, and sterile environment. We also want to make sure that he is stable and can make that transition to home care – optimizing his comfort AND his time at home with us. It is so hard to know when that moment will come. Our PACT team is guiding us well, but there is still always that lingering question – when do we say, it’s time to bring him home?
So far, we have been true to our goals. He has not had anything invasive or painful done to him. He had an EEG this morning to evaluate for a cause of seizures. This involved electrodes all over his head, but it was perfectly painless. He has his feeding tube, which doesn’t seem to bother him at all. He has his nasal oxygen, which, while less than ideal, doesn’t seem to bother him much. We do bloodwork every 1-2 days depending on what we’re watching, but otherwise, he is pretty much left alone to lie on our chests, have a paci, and enjoy his big meals of breastmilk every 3 hours. He is always with his daddy or mommy.
One day at a time. One hour at a time. One setback at a time. It is all I can deal with at this moment. Living in the now, holding my sweet baby, kissing him every time like it could be the last – that is how I am existing. What comes tomorrow will just have to wait until tomorrow. His presence is a gift, he is the sweetest little boy, and I cannot look into the future, or my heart will shatter.