On My Mind

These are the thoughts that go through my mind persistently right now...

My Baby Girl couldn't breathe. This was so apparent when I noticed all of the machines and drugs she required to help her get oxygen into her body. And it was even more apparent when she breathed her final breaths on her own in the fresh air - short little gasps, many seconds apart, because she could not get all of the air she needed in a breath, nor could she hold the air inside her lungs once it got there. Today I went to yoga class for the first time since about a month before Tikva was born. I bought a 20-class pass and plan to go 2-3 times a week from now on. I think it will help in ways I can't really know right now. I dedicated my practice to Tikva, and asked her spirit to breathe with me. This kept me going when I felt tired, sluggish and like I just wanted to cry. And yet each time I breathed, what hit me was that Tikva couldn't breathe. How fundamental breathing is. How scary it is when your baby can't breathe. In spite of a healthy heart, a strong healthy brain and so many organs in working order, all surrounded by a perfect, soft and beautiful little body, my daughter could not breathe. Right now, this just breaks my heart. So it is for her that I am doing yoga, and for me. Because I can breathe and I have a healthy body that I've been accustomed for most of my life to really underutilize.

Tikva didn't survive; Tikva is no longer alive. I really thought she would make it. It's as if I chose early on to abandon all worry that she would not, while always holding that possibility in my consciousness. Was it denial, or survival? Hope took over, it really did. Rereading blog posts from the weeks just before and after Tikva's birth, I really believed she would be coming home. But she didn't. And she's no longer alive. This part of me - now - feels stunned by this realization. Unable to shake it right now.

When we first sat with the surgeons from the Fetal Treatment Center, after they looked at Tikva's initial ultrasound results, they told us that she had a 30-40% chance of surviving based on the severity of her diaphragmatic hernia - and it was considered severe. Beyond survival, they could not predict quality or length of life. 30-40% sounded like worthwhile odds to me. I was undaunted by them, and saw no reason why Tikva couldn't be in that 30-40%. I don't regret that one bit, but two things hit me now: Tikva didn't survive, and in a way that puts her in the other 60-70%. And at the same time, she lived longer than they thought she would - I don't think they knew if she would even make it past her birth. And they were surprised for several weeks that she got as far as she did. So where does that put her? Does it matter?

Was there more we could have done to save her? Did we do everything possible? Was she really ready to go when she did? This is my ordinary brain trying to catch up with my intuitive heart and deep place of knowing - the part that was able to listen to Tikva when it was time to let her go. This is my ordinary brain now, almost a month since her passing, trying to reconcile it all. It's not a neat and tidy thing to reconcile, maybe impossible to reconcile. Oh, the busy busy brain... trying to sort everything out so that it all makes sense. Right now so much of this doesn't make any sense.

I think about all that Tikva went through in her short life. I think about all that she put up with of what the doctors did to help her not only survive but get stronger and better so that she could eventually come home. I ask myself, if I had known she would have lived just two months, would I have wanted to make things easier for her, put her through less? I think about her surgery to put her organs back in their place and repair the hole in her diaphragm. She could not have survived without it. I think about the cardiac catheterization - little Tikva lying on that huge table, eyes wide open, alert to all that was going on around her and hearing the Beatles playing overhead - to check the severity of her pulmonary hypertension; and the hard week she had afterwards as she was recovering. I think about the bronchoscopy on her very last day that revealed such a severe bronchomalacia. How Allyson looked me in the eye just before and said, "There is still hope, the possibility of good results." How my heart sank with knowing what I already knew when the malacia turned out to indeed be as severe as they thought. I think of all the drugs she was on constantly. I think of the formula she was fed for 4 weeks instead of my milk because of the leak in her lymphatic system. I think of the c-pap mask and the tube down her throat to help her breathe, how much they nudged her almost constantly, while at the same time helping her to stay alive. In a sort of delayed reaction, I am realizing just how much was constantly being done to my child, how much needed to be done to keep her alive in the hope that she would eventually grow stronger and be able to do it all on her own. Not that I didn't realize it before, but I think now I have the emotional space and time to experience the trauma of all that I watched her experience. The larger trauma of being in the ICN every day and all that I witnessed and experienced there. And it is traumatic. And it's depressing and sad. And it feels endless right now.

Time for a support group. I made a bunch of calls today and I'm pretty sure that I will have found one soon. I need this for many reasons right now.