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November 2010

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Prematurity Awareness Day and Bloggers Unite

Today is National Prematurity Awareness day and I am 29 weeks and 6 days pregnant. According to the March of Dimes; if my baby were to be born now, she would have up to a 96% chance of survival. The percentage itself seems comforting at first glance, but it is really not. There is absolutely no component of that statistic that speaks to the level of difficulty surviving babies may have, their disabilities or their quality of life. Speaking in terms of "survival" and throwing out promising percentages can be misleading if you do not understand the risks associated with prematurity. Premature babies are at risk for a host of complications that can cause permanent disability and even death and prematurity is on the rise. Fortunately, the March of Dimes addresses each individual complication on their website along with detailed information specific to gestational age at birth.

I take prematurity very personally. I may be nearly 30 weeks pregnant today, but I still worry daily about the possibility that my daughter could be born premature. I don't worry because of what I know. Knowledge is power and I am well aware of my risk factors and what warning signs to look for. I worry because of personal experience. My son Ronan Christopher was born 17 weeks early on January 29, 2005. He fought hard, but could only sustain life for 23 hours. He died in my arms on January 30th.

I have had one healthy son since losing Ronan. My pregnancy with him was complicated and terrifying, but we made it to full-term. He is an absolute wonder and the light of my life. He brought so much healing to me and my family, but there is an innocence I will never have back. No person can replace another and I will always have an empty place in my life where Ronan belongs.

I didn't expect many of my new son's firsts to be tainted by the sadness of milestones that Ronan never reached, but they were. I didn't expect I would feel guilt at getting frustrated with this little person (who to me was nothing short of a living miracle), but I did. I certainly never expected to feel that my new baby was "on loan" and would be taken from me too, but I did. In fact, even though he is nearly four years old now, I still carry the fear that he could be taken from me at any time. Life has taught me just how fragile and unpredictable it can be. I have learned that fate has never been and will never be in my control.

It has been nearly six years since Ronan's death. In fact, my baby girl is due two days before his sixth birthday. I should probably be joyously anticipating the birth of my baby by now and I am happy; but truthfully, I spend a lot more time praying and worrying than anything. I was afraid to announce my pregnancy for fear I'd have to do "take-backs." I have bought a few things as a "reward" around milestones (18, 24 and 28 weeks), but am mostly still unprepared because I am afraid I'll have to return things. For a long time I had trouble imagining my baby in my future. I was afraid to allow myself to feel attached. This fortunately gets better as I get further along, but I am never free from worry. I know I won't even be free from worry once she's born. Having my son taught me that. I'll worry about SIDS and car accidents. Some of that is normal for any parent and some is directly related to the trauma of loss. Every beginning has an end, it's just a matter of when. All I can do is protect my babies the best I can and pray that I will never outlive another of my children again.

I have tried to convince myself that if I should face another loss I would be able to handle it better because I would know what to do. I know that's not true. I would be utterly shattered again. I might know who to call for photos and how better to preserve my memories, but I could never truly prepare for the emotional impact of loss. I know I've put my heart on the line with this pregnancy and that's why I'm scared. As long as it's taken me to accept the reality that I am really having another baby, I know that I am already unconditionally in love. I have been completely emotionally invested since I first saw those two little pink lines. That's a terrifying risk! And this time (unlike with my son) I didn't have the insanity of post-loss conception obsession to motivate taking the risk on another pregnancy. Although I am immeasurably grateful for this chance, I didn't plan this pregnancy. I was too afraid to make another deliberate attempt to conceive. I considered myself lucky to have my son and thought getting pregnant again would be tempting fate.

Should having had a healthy full-term baby since my loss give me comfort? I thought it would, but obviously it hasn't. Should being nearly 30 weeks pregnant make me feel better? I am well past the gestation at which I had Ronan. It's a huge milestone for a "loss mama" to see her subsequent pregnancy go past her point of loss. Unfortunately, it's not as comforting as one might expect it to be, especially the later the point of loss is. Not to split hairs, but there is a big difference between losing a baby at 8 weeks as opposed to losing one at 38 weeks! Those later losses just don't register in the realm of "normal" or "acceptable" for most people. I delivered Ronan at 22 weeks and 5 days, which was over a week before he was even statistically "viable." Most babies born prior to 24 weeks are not rescuscitated, but he was a very robust 1lb 3oz. He came out kicking and made efforts to breathe on his own at birth. Every baby is unique and his or her circumstances are different, which is why we can't always rely on statistics to guide our judgement where prematurity is concerned. The baby I am carrying now has that whopping (and oh so optimistic) 96% prematurity survival rate going for her, but what would that percentage really mean for my baby if she were to be born now? Ronan was almost 23 weeks when he was born. Statistically, he had about a 17% chance of survival. It wasn't a good chance, but it was still a chance. In the end that number meant nothing. It meant nothing compared to his individual circumstances and risks anyway. I am not comforted by statistics.

There will always be fear in any subsequent pregnancy for me. If not fear of history repeating itself then fear of everything else that could go wrong. Because of my history and risk factors, my greatest fear right now is stillbirth. That's one of the worst things about being one of the many reluctant members of the "deadbaby club." Those same loss moms who carry you through grief by sharing their empathy and compassion with you like no one else also have stories. You get to know each "angel baby" and each story intimately. A burden shared is a burden lightened, so they say. But when you are pregnant again, you wonder if those terrible things will happen to you and your baby. It's the last thing you want to think about, but it's always there. Those precious little angels can haunt an expectant mother (including her own). Sometimes I wonder if I can even call myself "expectant" because I don't really feel I can expect anything. Loss has stolen my innocence and naivete forever. It's sad, but what about loss isn't? It's traumatic and it leaves permanent scars. It changes the person you are and it changes how you perceive and react to things. You go on living, but you never "get over" child loss.

I have spent the past five years trying to honor Ronan and keep his memory alive. No mother wants to live with the thought that her baby's life had no impact and will be forgotten. My biggest achievement in Ronan's honor has been raising funds for the March of Dimes. I do so to give other preemies a better chance to survive. To date, I have raised nearly $4,000 with the help of supportive friends and family and I am very proud of that accomplishment. It's one area in which the numbers actually count.

I'm posting this entry to Bloggers Unite for National Prematurity Awareness Day in memory of my son Ronan Christopher. You can read his story and see his photographs at my grief journal (which also doubles as his website): http://meandro.livejournal.com/94789.html.


Yup, I know. I know I'll probably have her a week sooner than her due date anyway, but it is very close.
I could not imagine what yo go through every day Maggie, your a s trong woman/mom/mommy.
No parent should have to see their child grow wings. I mom on cafemom, had her son October 6, had his 1st birthday party November 9 and he was rished to ER that night do to high fever and vomiting, 3 days later he grew wings and went to heaven. Menagitus took that poor babys life. I would not be able to handle if something happened to either of my boys.

Your baby girl is doing great, she is growing nice and having a fun time kicking mommy :)

Oh my God. It was hard enough losing a child I only had for 23 hours (minus the pregnancy, of course) I cannot imagine losing a one year old or older child. That poor mother must be in hell right now. :(

I hope my tiny dancer keeps on kicking... I get really worried when she has quiet days. I know sometimes she is probably just going through a growth spurt, but it's hard on me. I'll be glad when I am getting NSTs twice a week. I think that will help ease my mind more.
Thanks. ;)
I'm praying for you and your baby and I have an overwhelming feeling that you will be delivering a healthy baby girl.
I really hope so! I am so so close, but still feel so far away.
Thanks. :)
How soon do we need to start our MOD campaign? I hope we can get more people involved this year.
I usually wait until February. I started in January last year (thinking tax returns) and ended up feeling pretty burnt when I didn't get a lot of responses because I was already upset about Ronan's 5th birthday and angelversary. It was not pretty.
Maggie, I was thinking about Ronan a lot while I was writing my own Prematurity Awareness Day posts. And I know what you mean about Johnny's firsts being tainted by milestones Ronan never reached. I felt that way, too. It seems there's no escaping that.

I'm rooting (and praying) for you and your sweet girl. It's not fair that losses take away so much of the joyous anticipation that should come with pregnancy. *hugs*
I guess there isn't. I just wasn't prepared for it. I was so ready to feel joy and happiness and I just didn't think it would be the reminder it was. I feel bad about it for Jonathan, but that's in my head too - he'll never know.

This pregnancy has been going so well and yet I am so terrified. I think my anxiety is really mounting now as we're getting closer. I am too close now to have it all ripped away and I am so freaking scared. Part of me just wants her out now so that I don't have to worry about my body killing her anymore. I know that's crazy...

I really hope that loss has stolen its last joys from me. I would like to be able to enjoy my daughter's firsts fully.