Monday, October 29, 2012

Deja Vous

This past week has been a tough one for me emotionally. I came across a family on Facebook that was going through a very similar situation as to what we went through with Naya. Same infection, same hospital, same lung issues. Hell, it even looked like they were in the same room. Watching their situation unfold really took a toll on me. I could feel their blind hope and terror as they watched their baby struggle for its life and it brought me back. I felt the emotions that I felt 15 months ago, watching my daughter go through the same thing. Riding that NICU roller coaster and how it could go from joy to pure terror instantly. My heart was breaking because I knew how my situation turned out and I was willing the same not to happen to them. It kills me that anyone has to go through this.

Unfortunately, the baby passed away. I watched the announcement on their Facebook page and I was brought back to those early days right after Naya died. How completely lost I was. How I felt like I was in some nightmare of a world and I would surely wake up because it wasn't real. I remember thinking that if I could just figure out the right moves to make, I could change it. I could bring her back and she wouldn't be dead anymore. I just needed to figure out a way to wake up and I could fix everything. I remember feeling so hopeless and crazy. I didn't want to get out of bed. I was an unfunctioning, shell of a person and, honestly, I wanted to die. The only thing that even partly held me together was the fact that I didn't want to put my family through what I was going through. That is pretty much what got me through those first few days/weeks/months.

Thinking back to how low I was during that early time made me realize that, even though it doesn't feel like it, I am recovering. I function. I get out of bed. I don't feel as helpless. I even laugh and experience joy again. I have established something of a new normal. I know I can't change what happened and I've accepted that. I still hate it but I'm not stuck in that place where I believed that I could do something to bring her back. And that is so much of what early grief entails; It's you searching for a way to get out. Someone told me that's what you are doing the first year - searching for your baby, your old self, your old reality. After that year, you sadly realize that you those things are gone and you need to figure out a new way to live. It sucks but quite honestly, it's the only way I've figured out that will let me survive. I am slowly learning to live again all be it with a huge gaping hole in my being. The hole isn't quite gaping anymore but every once and awhile the scab opens, the pain seeps out and I hurt.

Monday, October 22, 2012

Advice for the Rainbow Pregnancy

Rainbow Pregnancies are hard. They take a lot out of you, both physically and mentally. Physically, they are tough because most rainbow pregnancies occur soon after the loss. Whether you experienced a miscarriage or a full-term loss, because of the proximities of the pregnancies, your body is physically going through extra stress. The same goes for the emotional side - you have all of the typical worries of a pregnant woman but they are magnified because you are living proof that bad things can happen. Multiply the physical and emotional stress with your pregnancy hormones and you find yourself in an insanely difficult situation.

Lately, I've been running into a lot of women who are very early on in their rainbow pregnancies and are looking for advice on how to cope. I, obviously, don't have an answer that will work for everyone but I wanted to share what worked for me and helped me get through the longest nine months of my life.

1. Give up control
Throughout my first trimester, I was a nervous wreck. Every time I went to the bathroom, I was sure I was going to find that I was miscarrying. I realized around the beginning of the second trimester that beyond getting proper medical care and keeping myself healthy, I couldn't control what was happening with my baby. This realization made me relax (a bit) and I knew all I could do was take the pregnancy day by day and be thankful for each one I had. Sometimes it's liberating to give up control.

2. Enlist your physician
I've said it before and I will say it again, I could have never gotten through this pregnancy without my doctor. She viewed the pregnancy as a team effort and did everything she could to take some of the stress off me, including extra visits, extra ultrasounds and maximum support at every visit. I just went back to see her for my 6 week check-up and she sat there and cried tears of happiness with me while saying "We did it!" Having a compassionate and understanding doctor who sees that you are not the average pregnant mother and offers you the support that you need is key.

3. Find peer support
I was lucky enough to have a very close friend pregnant with her rainbow the same time I was. We were able to talk about everything from the physical aspects of our pregnancies to the more complex emotional issues of the pregnancy and grief combination. I realize how rare this is and that I was lucky to have it. If you can, reach out to support groups, in real life and/or online, and seek out others who are also going through rainbow pregnancies. Sometimes it's nice to hear that others are having similar feelings and emotions so you realize that you are not going insane.

4. Expect feelings of deja vous.
This is especially important if your pregnancies are close together. I had Naya and Rhone within 14 months of each other and spent the majority of the last two years pregnant. There were many, many times where I thought "didn't I just do this?" and confused the two pregnancies. These moments can be especially hard and emotional when you are going in for ultrasounds, buying baby items or fixing up a nursery. The deja vous  can cause a variety of feelings from bittersweet joy to unbelievable pain. These feelings are normal and don't feel bad about having them.

5. Expect some guilt - I feel as if this is somewhat inevitable when you are having a rainbow. You feel guilty for enjoying anything to do with the new baby because you don't want to feel like you are abandoning the one who died. I even put off buying anything or fixing up the room until the last month of pregnancy because I felt that by doing these things, I was erasing Naya. I felt so guilty because I didn't want to seem like I was letting her go. These feelings are so normal. I just kept (and keep) telling myself that Rhone is Naya's brother - he is the closest thing to her and she would have wanted me to love and care for and enjoy him.

6. Be easy on yourself.
As I've said, rainbow pregnancies are HARD. It's okay to feel overwhelmed and scared. You are doing   something that is hard for normal women all while grieving the baby you lost. You are going to have days that you are excited. You are going to have days that you feel like you can't do it anymore. Again, all of this is normal and you shouldn't feel bad about any of it. Be easy on and even spoil yourself during this time. You are going through something incredibly difficult and you deserve a break, especially from yourself.

7. Do what works best for you.
I think, most importantly, is to do what is best for you to get through the pregnancy. For me, it was kind of ignoring the fact that I was pregnant. I needed to mentally block it out in order to get through the day to day. Sometimes, I felt bad about it - like I wasn't connecting with my baby - but I realized that what my baby needed most was my sanity intact and my body healthy to take care of him. If you need to put up the block, do it. If you need to bond with your baby and celebrate every moment, do it. Do whatever it is that YOU need to do to get through this nine months (within reason - stay away from the obvious like drinking, drugs, etc.) and do NOT feel guilty about it.

Monday, October 15, 2012

Pregnancy and Infant Loss Awareness Day

The Pregnancy and Infant Loss Awareness Movement began in the United States on October 25, 1988 when then-American President Ronald Reagan designated the month of October 1988 as Pregnancy and Infant Loss Awareness Month. Today, October 15, is Pregnancy and Infant Loss Awareness Day. While I am glad that there is a day to recognize our lost babies so I don't feel so alone, it is terrible that there needs to be one. The truth is, not every pregnancy arrives at a happy ending. As I've said before, one in four pregnancies end with a loss - most of these being miscarriages but still a significant chunk who are babies who have been born.

The United States has the highest infant mortality rate of all the other developed nations. We are ranked #40 in the World, behind countries such as Cuba or Lithuania. Our ranking also keeps falling every year (we were ranked # 12 in 1960). One out of every 233 children will die under the age of 1 in the US, a number that is ridiculously high. And its not due to lack of care - our nation spends more on healthcare per capita than any other and also has more neonatologists than all the other countries in the world.    

The number one cause of death of infants in the US is prematurity although SIDS and, sadly, asphyxiation also rank highly. In the United States, SIDS is the leading cause of death for infants from one month to one year of age and kills about 2,500 infants a year. SIDS is defined as the sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene and review of the clinical history of the family and infant. Most deaths occur between two to four months. SIDS can not be prevented and there is no way to predict when it will happen. (Don't get me started on how misunderstood SIDS is. Drives me nuts how it is tied to accidental suffocation. Not the same thing people. But I digress. That's another topic I can delve into in another entry.)

The United States also has an abnormally high prematurity rate. More than 15 million (or 12 %) of babies are born premature in the US every year. The US ranks 131 in the world for premature birth rate - the same as Somalia, Thailand and Turkey. More than one million of the babies who are born premature will die as a result of complications. That is a staggering number and needs to change (hence my commitment to help the March of Dimes). The walk is coming up soon and I will be asking for your help again. More information will be coming soon!

So today, on Pregnancy Loss and Awareness Day, remember the 1 in 4 who never got to hold their child. Or gave birth to a child that they never got to see take a breath. Or held a child they never got to take home and live their short life on a hospital. Or had a child that passed away suddenly and without warning at home. Put yourself in our shoes and remember that pregnancy and infant loss is real, is occurring more often and can happen to anyone. Even you. Even me.

At 7pm this evening, I invite you to join me in lighting a candle in memory of all of the babies lost. This is a worldwide event and hopefully, you can be part of a wave of light in remembrance.

My love goes out to all of the angels that left us too soon and all the families that are dealing with this loss. Hug your children a little tighter today in honor of us who can't.

I love you Naya. I miss you so much.

Friday, October 5, 2012

One Month

Having a rainbow baby can be described in many terms. It is beautiful, it is heartwarming, it is joyful, it is life-saving but most of all, is bittersweet. Oh, just so bittersweet.

Today, Rhone is one month old. I can't believe it's already been a month since he was born. A month since my world started to light up again. I am completely in love with him. I love watching every moment of his day. I don't want to put him down or take my eyes off him. Despite the fact that I can't wait to see how he grows, I am enjoying living in the now because I know he won't be this young forever. Whether it be him peeing on me while changing his diaper or smiling while tickling his feet, I am cherishing every moment I have with him, especially cause I know it could be gone in the blink of an eye.

That's what makes life bittersweet. As I hold Rhone and watch his first smile, hear him coo at me while I hold him on my chest or even feed successfully in the middle of the night, I can't help but feel a little sadness mixed in with the thrill of seeing my child thrive and grow and hit these developmental markers. It reminds me that I have another child that didn't get to hit any of these milestones or do any of these things. And it hurts.

Those are the moments that I have to force myself to shut off my brain. There are times when I am sitting there, rocking my beautiful baby after he has finished his meal and my mind starts to wander. I think about how much I love him, how much I enjoy holding him and how I never want to let him go. Then I think about how I have had to let one of these beautiful babies go - I had to do the unthinkable. I know it's weird because I have obviously gone through it, but I can't not physically comprehend how I was able to let her go. How I was able to come through her death still breathing with my sanity (mostly) intact? Just thinking about the pain of ever losing Rhone is excruciating. How the hell did I ever survive the loss of my daughter?

And then I have to stop and go back to living in the moment and enjoying my son. My rainbow. One of the people that has saved my life and is helping me go on. Someone that lets me catch a glimpse of what I lost - a gift that is so beautiful yet so painful. So bittersweet.

Happy one month birthday little man.