Friday, August 14, 2009

This Lovely Life

I literally devoured this book......."This Lovely Life" by Vicki Forman.

Ok, well, I didn't actually tear out pages and consume them with a side of french fries. But I read through that book as fast as anything I've read recently, and that's saying something. 2 days, maybe 3 tops. Wanna hear about it? If you had a preemie, you do, trust me.

***warning, spoilers below! If you don't want to know how the book ends.......I guess you'd better go play some games on Facebook, or run to Starbucks, etc while we discuss. :)

This Lovely Life is the story of Forman's twin pregnancy, and delivery at 23 weeks. Her time in the NICU, the early loss of one baby and years of health problems and disabilities for the other. You can imagine that I found lots to relate to in her story.

Her babies (one boy, one girl) each weighed slightly less than my youngest son did at birth. And overall, both of my NICU experiences were "better" than hers were, if you can use such a word. But in Energizer's 11 weeks in the hospital, he suffered through so many of the same things as Forman's son Evan........I was just nodding my head when she spoke of brain bleeds, PDAs, oscillating vents, apnea monitors, the endless variety in the personalities of nurses and doctors, and the constant feeling of fear, dread and anxiety that NICU parents live under.

And out of all of the "yes, I remember, I understand" moments I had while reading this, one of the most poignant was her description of how your child, while in the NICU, never really feels like he's yours. I told K this on the morning after Mr. L was born......."I don't feel like there IS a him" was my response to being asked if I wanted to go up and see him. Forman points out that you, the mother, can do almost nothing for the child, especially at early, critical moments. You can't feed him; he doesn't take feeds yet anyway. You can't hold him, or if you can it's only in conjunction with an artificial schedule and only if a nurse agrees (it's a lot of work for her to take the baby out, after all). You can probably change a diaper, but heaven forbid if you actually throw the thing away without weighing it first. Result: This doesn't feel like your child, it's their child. You're visiting, you're observing, and then you go home or to your hotel and your/their baby goes on about his day and night whether you can be there or not. :(

Forman's book is probably considered controversial by some, and in all honesty it's a little disturbing to me at times too. I can't separate myself from my past, my experiences, so I know that my judgment is skewed, but.......when she tries to insist to the neonatologists that her babies should be DNR, I have a hard time understanding. I don't judge, really I don't, but I know that a DNR would not have been a choice I could have made. But she foresaw a future for her babies that would be filled with DIS............DISabilities, DISorders.........and she didn't know if she and her husband were up to the task. And, they had a preschool-aged daughter at this point, so that was an additional variable to consider.

As the first few days progressed though, they began to realize that a DNR was both impractical and not really what they wanted. After originally telling the NICU docs to discontinue all care (and finding that the docs didn't obey), and learning more about the babies' odds, etc, the DNR request was withdrawn. Forman's daughter lived just a few days, her son lived until age 8 although he continued to suffer health problems, seizures, and the loss of his sight due to ROP.

When I read something from a really good writer, I always run across passages that just "speak to me". Something about that phrase or sentence reaches out and grabs me, makes a connection with me through a deep understanding of where it's coming from, I guess. I've gone back and started to re-read the book, and am marking pages with those powerful phrases on them. Now, I want to share a few of them with you, for the sake of the NICU moms out there and the unfortunate sisterhood in which we find ourselves.

After Forman's baby daughter dies, family members are helping her with funeral arrangements. One day, at her home, Forman allows the phone to ring and does not answer. A family member criticizes, tells her she should answer. Her thought is this: "In my grief and panic, I also resented the fact that Curt still lived in a place where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay. Our time in that place had ended." Heartbreaking way of describing how different the world becomes once you lose a child, or are a NICU parent of a child with disabilities.

Soon thereafter, Forman's son takes a turn for the worse and his sats dip drastically. The doctor calls her back to the hospital at night, and she tells the story of what it's like to watch that O2 sats number on the monitor........."this was also the machine that sounded an alarm every time the saturations went below a certain number, usually 85. This was the machine I followed intensely in those first few weeks, as if by counting the numbers, I might also watch Evan survive......I touched my son's inch-long foot and saw the numbers go down even farther......."

Oh how I remember this. I would look at that O2 number and "will" it to go up, or to stay at a certain level and not dip below. I've never concentrated on anything so hard in my life, just focused on that screen and that number as if by the force of my thoughts I could make the number go where I wanted. And all that you want to do, when your child is in distress, is to help in some way, ANY way. You can't pick him up, you can't rock him and console him and make it all better like Moms should do. The worst thing of all is when you do the little you can, like maybe put your hand on the baby's back, head, leg, etc, and the result is that the number goes DOWN instead of up. The guilt of that feeling, knowing that I'd caused a desat due to overstimulation or whatever, will stay with me forever. :(

Part of the book consists of Forman's journal entries that she wrote during those NICU days, and it's a window into exactly what she thought and felt at that time. The August 30 entry goes like this:

"I do fine until I compare Evan to the others, the babies that arrive and depart, those not on a ventilator or oxygen, the nearly full-term babies. Monsters, I call them. Monster babies. My walk to the neonatal unit takes me past the nursery, where a fresh crop of newborns appears daily. Even harder is my glimpse down Labor and Delivery. Mothers-to-be stand waiting for their turn at birth. I remember seeing a pregnant woman the day after I gave birth to the twins and feeling so confused: Why me, why not her? How long will it take for that confusion to go away?

Thirty-two week twins arrived in the nursery the other day--I heard the nurses discussing the mother's labor, how the doctor had planned to deliver them soon. Thirty-two weeks? A whole 8 weeks longer than I was able to keep Evan and Ellie.....To accept all this, everything else needs to fall away: the pregnant women, the full-term babies, the preemies older than mine. In any comparison, I come up short, as does my son. It does him (and me) no good to dwell on this, to resent being so much at the bottom rung, to wish another super-preemie would show up so that I could feel better. Nothing I can do will make Evan bigger and better, able to hold his own against the monster babies. We're alone in this."

Aaah, yes. The comfort of recognition, of understanding, of saying "been there, done that." And no, my sons weren't born as early as Evan, or quite as small, and our "outcome" in terms of health and development was certainly better, luckier, however you want to put it. But nonetheless, everything else has not "fallen away" for me yet. Reading this book helps, because Forman comes to an amazing acceptance of her situation and of Evan's reality. And I do mean amazing. So many people have said to me over the years "I don't know how you do it, I couldn't be so strong" etc. But I feel like I should say those same things to Vicki Forman. I've never met her, probably never will, but I do want to thank her for sharing this story and helping us all to know that we are NOT alone in this journey of preemie parenting.

**Excerpts taken from "This Lovely Life" by Vicki Forman, copyright 2009 by Mariner Books.


K said...

SO hearttouching your post is - I feel so sad to see all that you have been three
I totally need to read thebook

K said...

I meant all the problems you have been through ( not "three")