Since my last blog post, I’ve tried many times to sit down and publish some of the thoughts that have been collecting in my overactive brain over the last few weeks. Unfortunately, by the time I do get a few minutes to myself at the keyboard, I am too tired to compose a cohesive sentence. So, the blog remains static. Although the next few weeks will continue to be filled with parenting, grading and social activities (yeah for Brianne and Bernie’s upcoming wedding and accompanying festivities!), I am going to try my hardest to keep the blog more active. As I sit here making  that promise, I can hear Clara upstairs chatting away with Taylor. Alas, my free time for today has come to an end. It is Easter Sunday and my daughter is ready to welcome it with open arms. Happy Easter, to all of our family and friends. May your day be filled with many sweet treats and happy memories!

Our story, along with some photos, is up on the site http://www.naitbabies.org/stories/henshall.html. Additionally, a video, which explains the disease, its effects and current treatments, is also available for viewing at http://www.youtube.com/watch?v=BZtwMW4KPGM&feature=mfu_in_order&list=UL. Clara is featured twice in the video — once as a newborn and then again as a one-year-old NAIT survivor.

More posts — including one on our recent trip to Chicago and all the fun that ensued — coming soon!

So, yes, now that it’s been almost 15 months since my last pregnancy, the thoughts regarding my next pregnancy (pregnancy #4) have been swirling. One would think that the thought of another pregnancy would rouse feelings of excitement, but I feel a lot of uncertainty — sprinkled in with a touch of excitement. We would love nothing more than to give Clara a living brother or sister, but getting to that point is going to be even more painful (both physically and mentally) than my pregnancy with Clara and filled with even more worry and stress.

Long story short: For those of you who don’t know the skinny, our next baby has a 100% chance of developing the same condition – NAIT -  that Clara had at birth. NAIT is a very dangerous disease in which my body develops antibodies against the baby’s platelets, which cross through the placenta and cause thrombocytopenia (a dangerously low platelet count). This thrombocytopenia can occur in utero (we found out about Clara’s after she was born) and can cause hemorrhages in the brain, liver, etc. A normal platelet count is between 150,000 and 400,000. At its lowest point, Clara’s platelet count was 4,000. Thankfully, Clara has suffered no complications due to the condition (we got lucky) and is mentally and physically developing as she should.

A few days before Christmas, Taylor, Clara and I went to New York City to visit Dr. James Bussel, one of the county’s (perhaps the world’s) leading NAIT physicians. In order to make the trip as memorable and fun as possible, we visited FAO Schwartz, took Clara to sit on Santa’s lap at Macy’s, and brought our little Christmas tree enthusiast to Rockefeller Center to see the big tree. In addition to all of the fun we had, we met with Dr. Bussel and his team to discuss NAIT treatment options and how to prepare for our next pregnancy.

There are two treatment options available and I’m currently leaning toward, what I feel, will be the best for me (given we actually are able to conceive another child — which, hopefully, won’t be a problem). One of the treatments for those in the “standard risk” category (i.e. us) consists of twice-a-week transfusions of immunoglobulin. These treatments will take place in our home and require me to actually sit down for anywhere from 6-8 hours (or more) at a time while immunoglobulin is transfused into my body. Between 32 and 34 weeks, we have the option of undergoing a procedure that will sample the baby’s cord blood to determine the platelet count. This is a voluntary procedure, but, again, one I’m leaning toward. If the platelet count is high enough, the pregnancy can continue, as is. If the platelet count is critically low (under 30,000), the baby is transfused with immunoglobulin on the spot. We would also have the option of delivering the baby at that time if we felt it was necessary. So, that, in a nutshell, is what we are up against.

Thankfully, I’ve joined an online support group composed of other NAIT moms. I’m learning a lot from those moms who have undergone treated pregnancies. These women are so informative, strong and brave. I know that they will be very instrumental in many of the decisions we make regarding moving forward with another pregnancy. We’ve been assured by Dr. Bussel and his team that 90% of treated pregnancies are successful. So, at least that’s promising. I’m just a worried mother of one angel baby who doesn’t know if she’s strong enough to endure whatever lies ahead. 

Since learning about this genetic incompatibility between Taylor and I and the condition that results, I have questioned whether or not we should consider having another child. Are we being selfish in thinking that we’ll be lucky enough to have another healthy baby? I love my daughter so much and feel blessed that I have such a healthy, beautiful child to love and care for. However, I would really like her to be able to experience all the fun that having a sibling can bring. So, as I told her the other night while we were laughing and playing before her bedtime, my only reason for going ahead with another pregnancy is so that she can have a brother or sister to share her life with. I am only doing this for her — as she is the reason I’ve spent the last 15 months smiling, laughing and enjoying my life.

For those of you who read this blog, I thank you and hope that as we begin this next phase of our lives, we are able to share the ups and downs that we  know it will bring. Meeting Dr. Bussel and his team and educating ourselves on NAIT have been the first steps that we’ve taken toward adding to our family. The next steps are going to be much harder, but as we’ve learned over the last few years, we are strong enough to endure just about anything that life throws at us. We are ready to face this new challenge knowing that the outcome far outweighs any of the obstacles that we will face along the way. All we have to do is look at Clara, our little fighter, who almost 15 months ago, showed us that a little strength can go an awful long way.

Just a few minutes old...

Clara just a week shy of 15 months old.

Stay tuned…

For those of you who frequent the blog (and to those, let me extend my heartfelt gratitude), my new year’s resolution is to be a more diligent blogger in the hopes that my two blogs (Yes, two. I also have a food blog — La Patisserie Peanut – that features my adventures as a Daring Baker) will provide me with the creative outlet I so hope to exploit over the coming year. My brain is just bubbling over with lots of thoughts and I know with the many events coming up in 2011, I’ll just have to turn to my blogs (instead of my ever patient husband) to set them free.

So, sit back, relax and watch Clara’s First Year Montage – it should get you caught up on all that you missed since the weather was warmer and the air full of the laziness that only summer can bring. Enjoy!

This year’s anniversary was different from last year’s in that it also included Clara. Last August 4th, I was pregnant with my little miracle baby, but this August 4th was spent taking care of Clara, bringing her to swim class and taking a float in our own backyard pool. As I went about my daily activities, I found myself feeling more pensive than usual. I knew I had to go about my day-to-day routine, but I realized that I wasn’t my usual talkative, crazed self. I also felt compelled to actually “live” in the moments of the day, without letting it pass by like every other. So, I took more time to just breath in the summer air and enjoy the scenery while out in the pool and relish in the moments I shared with Clara: Giggling while she played with my face and hair, smiling at me when she awoke from her afternoon nap, splish splashing so much in the pool that her face and hair were soaked within minutes; moments so very different from those of the August 4th of two years past.

Lately, I’ve been trying my best to really enjoy my life. I have a beautiful daughter, a wonderful and caring husband, a comfortable place to live, understanding and supportive friends and family and a job that allows me to spend more time with my daughter than away from her. Sure, Taylor and I have had our challenges — and losing our son was just one of them. However, one of the things that makes our relationship so special is that has grown stronger because of our perseverance. We have been tested (in more ways than one) and know that we really can endure great pain. Unfortunately, we have learned that it is loss that shows one how much there really is to live for. It is loss that forces you to face the most vulnerable part of yourself as you strive to overcome pain and move on. It is loss that gives you the strength to try something again, as you really can’t imagine things getting much worse. Over the past 11 years, we have lost many things and people who were dear to us, but at the end of the day, we try our best to focus on the positive — on what we still do have — and move forward.

So, as the day wound down to a close, and the anniversary of our son’s passing had not been mentioned by either Taylor or myself, I took the opportunity to “remind” Taylor of the date. When I asked him if he knew what day it was, he replied, “”August 4th.” I then followed up his reply with, “Do you remember what happened on August 4th, two years ago?” His reply: “Yes. That was the day that Clara became an option.” After processing his reply, I responded with, “That was the day that Clara became a possibility.” We always knew that Clara was a special little girl, seeing as she is our rainbow baby. And, every time I look at her, I am reminded of the little boy who sits watching all of us from above. However, I was pleasantly surprised by Taylor’s reply. To him, August 4th is not an anniversary of loss, but of all the things that this terrible occurence allowed us to find – strength, courage, love, hope, a renewed spirit and the blessing of another child.

Today is August 6th and tomorrow will be August 7th. And as with each day before, I will remember my little boy and the wonderful gifts that his passing bestowed upon us. Rest in peace, baby boy Henshall. Your Mommy, Daddy and baby sister love you and miss you very much…

So, picture this: Yellowstone National Park, July 2009 (ah…Sophia…). Taylor and I are having lunch at a restaurant in the park. The restaurant is outfitted with photographs of said park (for sale, of course) at various times of the year. One photo — it was of a bison and a rainbow — caught my eye. Then, bingo! I realized that I wanted rainbows to be the theme of the baby’s room. I took a stroll up to the photo, glanced down at the price tag and decided that the photo we had taken of a rainbow over a waterfall in the Grand Canyon of Yellowstone would suffice as my inspiration and anchor for the nursery. Now, the key was to find the perfect rainbow bedding….and thanks to a joint effort between myself and my best friend, Missy, Clara’s rainbow bedding became a reality. Not only is it absolutely perfect in every which way, but it was also made with love by a very important person in my (and now Clara’s) life.

Clara’s nursery today: 

Fast forward to early 2010. I had heard the phrase rainbow baby used by a Facebook friend and decided to look up its meaning. Much to my surprise, a rainbow baby represents:

The understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

And that is exactly the perfect description for our little Clara. She is our rainbow baby. Although it has been almost two years since we lost our son, I think of him every time I look at Clara, as she is the rainbow that now fills our sky with happiness. Believe it or not, I had never heard of the term rainbow baby until after Clara was born and her nursery was finished. But, I can honestly say that each time I step into her room to change her diaper, get her up from her nap or am greeted by her gummy smile each morning, I smile at my rainbow baby and embrace the memory of the baby who watches over her.

The photo that we took at the Grand Canyon of Yellowstone:

Because of our extended hiatus, it is only fitting that we provide you a re-cap of what’s transpired in our lives over the past two years. So, here goes:

1. Got pregnant again in February 2009

2. Bought a house in October 2009

3. Had Clara in November 2009

I think that’s about it. So, now that you’re all caught up, it’s time to start a fresh new season. New photos, musings and Clara updates (see Clara’s Corner) will be posted soon. Stay tuned!