March for Babies

Monday, November 16, 2009

Blog for Preemies, Fight for Preemies

Many of you know I go the extra mile to support the March of Dimes. I am vocal about it, I raise money for them and champion their causes as much as my schedule allows. I do this because I firmly believe that their work saved my daughter's life...the first time.
You all have been reading this blog to follow Amanda's journey through cancer. I have a confession to make, a revelation of sorts. This is not my first blog. I started blogging back in 2004 when I was desperate to have a baby and it wasn't working. I blogged through infertility, through pregnancy and through the NICU. Due to the graphic nature of infertility blogging (after all, we were discussing how babies are made) I kept that one anonymous. It was my secret group therapy, a place to meet and commiserate with like-minded hormonal infertile women.
For the March of Dimes Prematurity Awareness Month, the Fight for Preemies campaign and Bloggers Unite I shall bring these two worlds together. Following is a post I wrote while Amanda was in the NICU. I went by the pseudonym "Blue" and Amanda was called "Azure".

April 22, 2006 Expectations, Great and Otherwise
I don't know what I expected from pregnancy. I never imagined I would have the opportunity. After so many cycles ending in that stick with the single line I was absolutely dumbstruck by seeing two. Knowing it had been the result of the IUI I still looked quizzically at that double line and asked, "How did that happen?" I didn't really believe it then, or when the nurse called with the news of a positive beta, or when the nurse called with the more than doubled beta. I still wasn't really convinced when I got the quad screen or when we rolled in for the 20 week ultrasound. We could visibly see her moving all over the place on the screen but I couldn't feel her moving so it mentally and emotionally felt like I was watching someone else's home movie. What I need you to understand is how totally surreal the entire pregnancy seems to me, not just now that it is over, but the entire time! I was JUST starting to get used to the fact that I was pregnant with my growing belly and increasingly swollen feet when it ended. I did not bond with the baby in my uterus. I was barely able to accept the fact that she was there in the first place. I thought about having a little girl in the summer and the thought pleased me but mentally and emotionally I did not connect those thoughts to what was happening inside my body.
My water broke at 11:30am. Azure was born at 11:50am. In those twenty minutes we were asked repeatedly if we wanted extraordinary measures taken in order to save her life. In my shock and muddled thinking I was rendered speechless. I could not give them an answer. I had questions to ask such as: At 24 weeks and 3 days can she make it? Will she suffer? Will she suffer later due to her development outside of the womb instead of inside? Will she be in pain? I needed to have a discussion with someone explaining things to me so that I could make the best possible decision for the welfare of the baby. I still did not think of her as my daughter. She wasn't real enough yet. The thing is, there was absolutely no time for that discussion to take place.
Seeing her in the isolette in the NICU she barely looked like a real baby. How do I know this is my child? I did not experience labor and childbirth and bring forth into this world a bouncing baby girl. I had a traumatic experience with pain and fear and a voiding of something from my body (I never even pushed) and then T and I were left in a room alone and I was no longer pregnant and we didn't have a baby and I couldn't wrap my head around what the FUCK just happened.
I had specifically not had any expectations about what the labor and birth should be like because I wanted to relax and go with the flow. If I had a plan and things went another way then I might have been disappointed and I did not want to look back at what could possibly be my only birth experience with regret. What I had hoped for was to deliver her, probably with the aid of an epidural, and within the first hour after birth I wanted to do kangaroo care. That is to say, place her skin to skin on my chest and let her know where my breasts were just to get her used to the idea that food could be found in that general area. As it turned out, I wasn't able to hold her until she was three weeks old and the kangaroo care came much later at almost five weeks.
Azure had her immunizations Friday. I didn't think she would even have enough muscle tissue yet in order to get the shots but they assured me that they use a very small needle. Saturday she was "naughty" which is nurse speak for "she hasn't been breathing well and hasn't been pooping and has had more residual milk in her belly and isn't doing so hot right now". This was one of those days when I was not allowed to hold her, too much stimulation.
I look at that little girl, sleeping in her bed and I now realize she is my daughter. She has my nose and she is blond like me. Those things however do not make her my daughter. She is my daughter because I am there for her. I care for her. I love her and I am making decisions for her. Are they in her best interest? I hope so. I assume so. The biggest decision was already made. We decided to have them save her life.
I feel that all these things have been one big selfish act on my part. I wanted a baby. I wanted to try medical assistance to get pregnant before moving on to adoption and when things came to a head I held my tongue and kept my questions to myself and was grateful that my husband told the medical staff to do what they had to do to keep the baby alive. Yes, I find it amazing that should I still be pregnant right now I would be able to make the decision (CHOICE) to either continue or discontinue my daughter's life. I wonder if she would have been better off if we had just let her go. She wouldn't be struggling to do basic things right now like digesting, breathing, keeping her heart from stopping. Simple things like the sound of my voice, the light overhead, the gentle rocking of the chair or the supposedly soothing touch of my hand can be overwhelming to her. We are her parents and we had the CHOICE to let her live or die. I can't say for sure whether we made the right decision or not but I am glad we had the right to choose one way or the other. According to Tertia's post the other day babies in South Africa born below 2.2 pounds are not given oxygen support from ventilators. Azure would have died in that situation and it would not have been our choice, the choice would have been made for us.
I sat in the nursery at home Saturday night to pump. I looked around at the bookcase filled with toys, books and videos, at the changing table covered with clothes, diapers and skin care products and at the swing which is all set up holding a teddy bear no bigger than the girl who should be sitting there instead. I looked at that empty room and I felt sad that things didn't turn out the way they were supposed to. They weren't supposed to be this way. There I was pumping my breasts which would not have been possible had I not had a baby and yet, there was no baby. I was holding plastic bottles instead of cuddling my newborn. I do not yet feel like a mother and I do not think that I will feel like a mother until I get Azure home with me and I am the one responsible for her care. I will not feel like a mother until I no longer have to ask permission to hold her (Saturday and Sunday permission was denied), to bathe her, to change her diaper or give her medicines that she needs.
I did not have any expectations about what motherhood would be like, but I never expected it to be like this.

You can see more at I encourage you to visit this other blog, and to read the posts following February 17, 2006 (her birthday) to see just how SUPER MANDA got her start in life. She was and continues to be truly amazing. A rockstar right from the beginning. Not every preemie has it so good, not every family is this lucky. It is for THOSE kids and THOSE families that I encourage you to support the March of Dimes and spread the word about living healthfully before, during and after pregnancy. WE never thought that WE would be one of THOSE families...and neither did they.