The Journey With Annabel

A Day of Terror, A Cause for Celebration

I knew today was going to be a difficult day emotionally, as it was one year ago exactly that we rushed Annabel to the ER in respiratory distress. She had been crying and fussy all day, which during that time period was not unusual, but this time something was different. We all went to bed, she in her bassinet beside me, and tried to sleep. She was on oxygen and the sat monitor kept going off. The reading kept going lower and lower until it was in the 70's, then 60's. I checked the connections because this had happened before and one of the tubes had become disconnected. But no, everything was working fine. She continued to cry and was inconsolable. I woke Rusty and told him I was taking her to the ER. He got up and we headed to Vanderbilt, him driving (at Nascar speed it seemed) and me in the back seat with her.

On the way there her sats dropped down into the 50's. I kept turning up the oxygen, none of us realizing that the very thing that was supposed to be helping her was actually having an adverse effect and was drowning her instead.

I remember doing a lot of praying and felt a fear I had not felt in a very long time - terror. I evidently posted a message to my Facebook family and friends - "Rushing Annabel to ER - please pray!!!!" because that's what came up on my Timehop today.

In the ER on June 8, 2013 after they got her stabilized

They made me stop at the security checkpoint to examine the diaper bag, but Annabel and Rusty were rushed back into a room. A kind woman helped me find the room, and when I walked in my heart just about stopped. There were at least a dozen people in the room, all hovered over my baby working on her. I couldn't move, couldn't breathe, and couldn't take my eyes off my daughter, lying there so tiny on that huge bed. A man, I'm not sure what part of the medical team he was, ushered me into a chair to the front right of the room where I sat, still clutching the diaper bag as a lifeline, as the continued to work on her.

I had felt terror like this only one other time in my life - during a home invasion on Halloween night when I was a sophomore in high school. I have not been a fan of Halloween since, just as I have feared the impending June 8 this year.

Most of you know the rest of the story - we spent the next 34 days in the PICU on a Vapotherm machine awaiting heart surgery, then another 25 days recovering from said heart surgery and the complications Annabel had from that. That in itself is a story that I often wish I had better documented, and then other times would like to forget, as it came with its own frustrations and close-call events.

I have been dreading this anniversary, dreading the emotions that I knew would come with it. I am sitting here with my laptop in the living room, watching Annabel, who is sitting in front of me in her monkey chair watching BabyTV as she holds the syringe we flush her feeding tube with. She has taken possession of two things - that syringe and my hairbrush, claiming them as her own, and will hold onto them for hours at a time, even through naps in her swing. She turns around and grins at me, her glasses down around her neck. I stand up to fix them and she grins again and reaches up for me wanting a hug and kiss on the forehead, our routine when I fix her glasses for the umpteenth time each day. Her curly bedhead makes me smile, and I think about that beautiful baby with the big blue eyes, so tiny and fragile a year ago who endured more than anyone should have to endure, but today is a healthy and incredibly happy almost 15-month-old who has come so very far. I am so thankful she will not remember the events of the past year. Some day, when she is old enough to understand, she will be amazed by her first year of life - the surgeries, the hospitals stays, all the tubes and medical equipment. Some day she will know why she's my little superhero, why I hold her so tightly and smother her with kisses, why I tell her constantly how much I love her, how proud I am of her accomplishments, how lucky I am to be her mommy, why I am so fiercely protective of her.

On Memorial Day, 2014

In looking at my Timehop app I am also surprised to discover that today also holds another anniversary, for two years ago I also finished writing Around the World and Back Again. Sometimes in life you are given wake-up reminders, and this was mine. This is a day to be celebrated, not feared! One year has changed everything - my child is healthy and I no longer sleep with her beside my bed with my hand on her body all night to make sure she is still breathing. I no longer fear that each day might be her last. If I want to I can buy clothes for her months in advance, because I know she will be around to wear them. I can take her to a routine doctor's appointment without constant fear that she will be admitted into the hospital. I can let them check her sats when she goes into the hospital for her routine sedated eye pressure exams and know that they are going to be above 95. Of course I always hold my breath while the numbers climb, and don't let it out until it hits the high 90's, but in my heart I know it will get there. And finally, I can remove my little hospital essentials bag from the diaper bag, which I have carried around for over a year now.

July 11 will hold another special day - heart surgery - but once again I will celebrate and rejoice in how far Annabel has come, and how happy and stress-free life is these days. I will enjoy these anniversaries and think of them as an occasion to give thanks for this incredible gift I have been given - this little girl I waited all my life for, who holds my heart in one chubby little hand (and her syringe or my hairbrush in the other ;-) )

Have a great weekend everyone!

Much love,
Anne-Marie

Mommy Guilt and Feeling Abnormal

May 4, 2014

So maybe "Abnormal" isn't the right word, though sometimes it sure feels that way. From the outside Annabel looks fairly typical, and on the rare occasion some are even surprised when they find out she has Down syndrome. Sometimes it's more apparent - such as when she's sleepy or smiles really big and crinkles up her eyes, or when her tongue is sticking out. But sometimes it's less obvious. Her glasses are almost always cause for attention everywhere we go. The feeding tube is another. People often do not understand why Annabel needs a feeding tube, and if you are one of those individuals please allow me to enlighten you.

Annabel was born with a duodenal atresia (you can Google this condition for more information), had surgery at 3 days old and was therefore not able to "eat" (nurse or drink from a bottle) for the first two weeks of her life. Two weeks. TWO WEEKS. She did not do well with bottle feeding after that (forget nursing, it just wasn't going to happen) because of this. The first two weeks are formative with learning to feed. We struggled with bottle feeding around the clock in the NICU until suddenly, after a swallow study, the realized she was aspirating. Bottle feeding was abruptly stopped and all of her nutrition was pumped through her NG (nasogastric) tube. She was NG fed for the first 6 months of her life, until after her heart surgery.

After another swallow study it was determined that she was only experiencing minor aspirations and we were allowed to give her small amounts of baby food and formula. She did really well for about two weeks, and then the novelty of food and formula began to wear off. At the urging of one of her doctors we removed the NG tube and attempted to give her all of her nutrition orally. Six months of age is generally a pivotal point in a baby's development, and they decide they are in charge of whether or not they want or don't want something. So, if we were going to wean her from the NG tube quickly, it was a "now or never" scenario. To say getting food into her was difficult would be a VAST understatement. She would vomit more than a couple of ounces, so we were feeding her approximately 8 meals a day, which is pretty much around the clock. I spent about 12 hours a day trying to get nutrition into her. We tried every bottle and nipple out there, using every technique I could Google. Nothing worked. I spent all day every day in tears, the frustration and guilt mounting. I felt like a failure. What kind of mother cannot feed her child? It's a simple process. Why can't my child do it? Its there some tiny piece of the puzzle I am overlooking? What if I hold the bottle just so? We modified nipples, we angled them in every way possible, put Annabel in every position possible. I rejoiced when I could get 2 ounces into her. At that point she was consuming about 16 ounces at most a day, and would often throw up a bit of that, so she was actually getting less. We would put the NG tube back in on the days when things were really bad, and it was always an enormously stressful event with Annabel screaming and both Rusty and me feeling like we had failed our daughter. I would ~~often~~ always end up in tears. It was very difficult to see my baby girl so unhappy. She would become withdrawn and depressed with the NG tube in place. For the most part, gone were the smiles and contentment. She had tasted freedom without that damn tube, and life with it was uncomfortable and painful. Not only did she have a small garden hose down her tiny nose and throat causing irritation, but it caused respiratory issues and had trouble breathing.

After two months of feeding struggles and weight loss (we were shocked to discover she had actually lost weight despite our best efforts) we were forced to face the reality that something would have to change. She was not going to figure out this eating thing in a timely manner and could not continue on with the NG tube. The breathing issue was the biggie, but the tape was also breaking down the skin on her face and she had begun pulling the tube out, requiring re-assertion several times a day. The gag reflex that comes with having a tube down your throat also prohibited her from being able to orally consume anything. So on December 9, 2013 Annabel underwent surgery to have a G-tube inserted. It was one of the most difficult decisions we have ever had to make for her. This was the first "elective" surgery, and something that we had to request, even though her doctors were pushing for it. I cried a lot up until the day of surgery and constantly questioned our decision, and sending her off with the doctors that day was extremely difficult, but she handled things like a champ (much better than mommy), spent one night in the hospital versus the usual 2-3, and has grown by leaps and bounds since last fall. It was, for Annabel, the best decision we could have made. We still greatly struggle with feeding issues, and Annabel receives feeding therapy. She cannot get the food down due to a fairly severe tongue thrust, which is something we are continually working on overcoming. She wants to experience eating and will put things into her mouth, but hasn't put two and two together that eating = a full belly. For now, eating is play, and it's an excruciatingly slow process.

Yesterday Annabel made her "big debut" in an upcoming music video featuring individuals with special needs. It wasn't always the case, but since participating in our first Buddy Walk last year, which I believe was my "aha moment", I have completely embraced her Down syndrome diagnosis and seek out ways in which she (and I) can participate in activities and events that expose not only us, but the rest of the world (via her pictures and videos) to Down syndrome. I no longer feel the extreme sadness and fear I once felt. I know Annabel has a very bright future ahead of her, and with our amazing support team (family, friends, The Down Syndrome Association), she will be just fine.

Waiting At the Studio

Annabel was first in line, but they were running a bit late so we and another family were waiting in the lounge area. There was a food table, and as I changed Annabel's diaper on the sofa (no changing area in any of the bathrooms) I watched as my friend fed her son, a typical (non Ds) boy who happens to have been born the same week as Annabel, bites of cake and banana. My friend (who is also a nurse) has a 2.5 year old daughter with Down syndrome, and I know she is fully aware of our feeding struggles.

At first I was quite amazed that he was eating like a "big kid" - wow, so young and is eating (and not choking on!) CAKE. But then, as I watched her feed this little 13 month old boy bites of cake and banana, I was suddenly filled with an overwhelming sense of sadness tinged with jealousy. Why can't things ever be easy for Annabel? And the selfish part of me wishes things were easier on me as well. Why do our weeks have to be filled with therapies and struggles? Why can't we just live normally? I was also a little angry at people who have never experienced the struggles of a special needs child. Sitting, crawling, talking, eating.. all things that are taken for granted with a "typical" child are extremely hard-fought for a child with special needs.

Last week we went to Walmart, and as we were checking out, Annabel happily in the seat of the cart playing with a toy dangling from her cart cover, the guy checking us out was staring, yes staring at Annabel. I have grown accustomed to stares and have learned to decipher the different stares. Some are merely curious, some are amused by her jabbering, or are enamored by her cuteness, but sometimes, and it doesn't happen very often, we get the "what is wrong with her?!" stare. I think part of it is the curiosity about her glasses since it's not often you see such a young child with glasses. Obviously I don't actually know what he was thinking, but I made my own assumptions based on my own insecurities and protective instinct. But on this particular day it rubbed me the wrong way and I forced myself to keep my mouth shut and not overreact in a moment of hypersensitivity. The mama bear in me wanted to confront him, but at the same time I realize that Annabel is going to experience stares her entire life, and I need to teach her how to deal with them. Confrontations are not going to be the answer.

Earlier that day I had given Annabel a taste of a food and posted the picture on social media. After we left Walmart I looked at the comments on said photo and found several of them to be fairly critical, or at least that is how I perceived them. The combination of Mr. Walmart and those comments hit me hard and I immediately felt angry, and in my head composed a scathing retort. I even, for just a moment, thought of disabling my account, or at the very least discontinue my posts regarding Annabel. But thinking back on how I want to teach my daughter how to react to criticism, I chose to say little on the subject and examine why I was truly feeling the way I was feeling. As the next few days passed, I thought about why I had felt so angry and hurt by the comments, and upon seeing my friend feed her son that banana it hit me. Those comments had brought up my own feelings of inadequacy as a mother, and I felt like a failure.

Imagine giving birth to a child, having that child taken away from you and not being able to take her home or make any decision regarding her care for over a month. And then you spend every week, often several times a week, at a doctor's office. They are telling you what to feed your child, how much to feed her, and pretty much dictating very aspect of your child's life. You then are admitted to the hospital for two solid months. All control is gone. You are helpless - helpless to doctors you don't fully trust, and again to every aspect of her care. You feel like a prisoner and you are 100% relying on them to make your child well. You don't fully understand the majority of things that are going on, but every day you put one foot in front of the other, so to speak, and try not to think too much. I spent many many nights apart from my child when she was in the NICU and PICU - literally two months all total. Every night I would leave the hospital sobbing. I am, to this day, consumed with guilt over leaving her, but I had no choice. Staying overnight in those areas was not an option. I could not be there all night with only a chair to sit in and be able to care for her the next day, so I had to, for my own self-preservation, go home at night. The last month of her stay in the hospital I was able to be there every night since she was in a regular room, and let's just say that ~~sleeping~~ trying to sleep on a pullout sofa can do some crazy things with your emotional state. But I was there caring for Annabel, and I wouldn't have traded that for anything. Nothing will ever keep me from being with my child again.

Being the parent of a child who is ill or has any sort of condition that's out of the "ordinary", often makes you feel powerless. Everyone has an opinion and doctors are quick to provide you with constant appointments and lists of do's and don'ts. And then there are the therapists with their own agendas and opinions. Every aspect of your life feels controlled. I have finally learned to take advice here and there, but at the end of the day I know my daughter best, and I use what they tell me as a guide and not gospel.

I only want the best for my child. I literally live my entire life for her. I love her more than anyone in the world. As a stay at home mom I am her primary caregiver and am here through the good and bad. Most days are awesome, but there are the difficult days, or at least hours, sprinkled here and there. I often don't share those moments because frankly, I don't want to think about them or put them out there to stumble across again. I want to move past the hard stuff and live for the great happy moments. I am an optimist. So to be criticized for what was to be an innocent photo of my child getting a few licks of a Popsicle was difficult, to say the least.

I am doing the best I can and I know I am a good mom for my daughter. But as with most moms, I always wonder if there is something I missed, something I should be doing that I'm not, something I did to screw her up for life. I question myself. A lot. I Google feeding and PT techniques. A lot. Right now the feeding issue is my biggest source of stress. I so badly want her to "get it". I want her to experience the joy of eating, and I want to do away with the stares of curiosity when we are out and I have to tube-feed her in public. I want to be rid of the questions when people hold her and feel the feeding port on her belly. I feel a lot of guilt over that feeding tube. Why can't I get my child to eat?! I have completely failed my child. As our feeding therapist has assured me many times, it's going to be a process, and it might even be a very long process. Annabel is going to take baby steps to get there and we are to celebrate each and every slight step forward in the process. She has and will continue to do things in "Annabel time". I know this ~~and accept this~~, but it's still a source of near-constant stress and worry. We will continue to do as directed and give her tastes of everything we are eating or drinking that she might be safely able to consume without choking.

Now that I have evaluated my own feelings, I am no longer hurt or angry with the people who made the comments. I understand why they made them and feel they were innocent, and in no way were intended to hurt my feelings. Oftentimes we speak before we think,and online it is difficult to read "tone", so a seemingly innocent comment may come across in a completely different way than was intended. I realize (and it was also pointed out to me) that in putting myself out there on Facebook, I am inviting comments and criticisms. I completely understand that, but at the same time I want people to understand why certain comments, particularly when it comes to opinions about my child's appearance or developmental issues, might be hurtful. We all have our likes and dislikes, our own values and thought processes, our own personal beliefs about many, many things. It's what makes us unique, and gives us something to talk about (and if you're into it, debate) with others.

Annabel has taught me so much, but the main thing she has taught me is acceptance and kindness. Before having her I feel like I was probably a fairly judgmental person. I had my own way of doing things and I was fairly certain mine was the "right" way. ;-) I'm sure a lot of us feel that way. But now I realize that I completely took a wrong turn on that road! Having Annabel in my life has taught me to love and nurture people, not judge them. None of us can fully appreciate or understand what goes on in someone's life on a daily basis, and we all have our struggles and burdens to bear. At the core, everyone wants to feel loved and accepted and not judged.

My main reason for sharing Annabel, aside from the obvious - she's just so darn CUTE - is to show the world that Down syndrome is nothing to fear, and that our differences are what makes us special. Annabel is more like a typical child than not. Sure, we have had more than our fair share of medical struggles, but we have persevered. Annabel is an amazing little girl who has overcome so much. I know she will continue to beat the odds, and with the continued support of our tribe (that's all of you!) she will grow into the most amazing woman! And if she makes you smile, then we've achieved our goal. I have had numerous people tell me that Annabel has changed their life. I won't divulge details because that's not what this post is about, but some of them have been fairly significant and that makes it all worth it.

My life is not perfect, and I have my daily struggles, but it's MY life, and it's pretty darn amazing. So Mommy Guilt and all, I wouldn't trade it for anything in the world!

Much love to you all! xoxo

Oh What A Year!

May 4, 2014

For the majority of you, you were able to follow us on Facebook and pick up where my last entry left off. I was often asked why I stopped writing the blog. There were two reasons as explained below.

The first is quite simple - I couldn't write. Along with a host of other pregnancy-related issues (if there was a pregnancy side-effect to be had, I had it!), I developed severe carpal tunnel syndrome. It was impossible for me to do anything with my hands, including typing. It was so severe that I was not able to sleep at night and would wake up with an insane amount of burning in my hands, particularly my left (dominant) hand that would have me walking the floors and sobbing. I tried every type of glove and remedy known to woman, but pretty much it had to run its course. I still have a lot of numbness and pain in my left hand well over a year later, particularly first thing in the morning. My OB felt my hand issues were also related to the extreme amount of amniotic fluid and that I might have permanent nerve damage from it. I think that might be the case, but it's liveable.

My second reason was that I was given so much information, so many prenatal diagnosis, that I was often having a very difficult time processing. I honestly did not know how I felt about things on a day to day basis. Writing might have been cathartic, but I was not able to, either physically or emotionally, put pen to paper, so to speak.

So, instead of revisiting what most of you already know, I will give you the Cliff Notes version of how the pregnancy, birth, and first year of Annabel's incredible life.

Pregnancy

Found out about Down syndrome at 15 weeks pregnant
Found out about AVSD (heart defect) a few weeks after that at the 20-week ultrasound
Found out about Duodenal Atresia a few weeks after that
Developed Gestational Diabetes, Severe Carpal Tunnel, Tore tendon in my left heel due to excess weight from massive amount of fluid, early development of Symphasis Pubis Dysfunction (basically, my ligaments separated VERY early in the pregnancy due to excess relaxin and progesterone, causing severe pain, making it almost impossible to walk - I ended up using a walker around the house most of the time I was in such severe pain), gum hyperplasia (resulting in having a large flap of skin that developed behind my front teeth removed the week before delivery. This had to be done with no anesthesia since I was pregnant), and the list goes on with all the typical issues, such as nausea, etc. I had some very atypical side-effect, which were often very puzzling to my youngest OB (I had 5 OBs during my pregnancy - so special! haha)

Annabel was born 5 weeks early when I went in for my routine (if you can call twice a week ultrasounds "routine"). I had excess amniotic fluid due to her duodenal atresia, and they had done a large draw the week prior to birth. I had, up until the day before she was born, been asymptomatic, but the night before my ultrasound I had developed a sharp pain on my left side and was unable to breathe well in any position. I remember being very afraid that last night at home. I was sleeping in the guest room, unable to climb up into my own bed due to the severe pain of Pubis Symphasis Dysfunction (yet another side effect I was "blessed" with), and lay awake willing Annabel to move so that I would know she was okay. I had a feeling I might be admitted, so I had my bag packed and ready in the car.

Sure enough, upon hearing about my symptoms they immediately admitted me on 3/14/2013. Too much amniotic fluid can be very dangerous for both mother and baby. It could cause placental abruption or cord prolapse, both of which could be fatal for the baby.

My brother-in-law and husband were my labor coaches. I am so thankful to my brother-in-law. My husband and I were high school sweethearts, so I have known his brother since then. Like my husband, he is a nurse, so I knew I was in good hands with my wonderful L&D nurse Amy, and my husband and his brother. Randy stayed up all night with me, keeping me company as I was took nervous, anxious and excited to sleep. And he stayed until Annabel was born and he knew we were both okay.

moments before being wheeled into the operating room

The 27 hours of labor was pretty easy since I had received an epidural early on. The horrific parts were receiving the epidural (done by a resident, took over an hour, my blood pressure bottomed out and I passed out - attending called in and he got it right in, but now I have residual pain from the resident's attempt) and the delivery itself. I continually passed out from the extreme pain. I could feel everything and it literally felt like my insides were being pulled up through my body toward my stomach. They could not give me more anesthesia until Annabel was out, so I drifted in and out of consciousness to a flurry of activity and voices calling, "stay with me," (the anesthesiologist, I assume). I do remember hearing Annabel's cry, and Rusty and I looking at each other, both of us in tears. I remember them holding Annabel up to me, but my vision was so blurred and I was so out of it that I couldn't see her. I remember worrying that she might be deformed (those ultrasound pictures are often pretty odd-looking!). I remember a woman exclaiming, "Look at all that black hair! She's beautiful, mama!" And I smiled and closed my eyes, and drifted off yet again. My memories of Annabel's miraculous birth are only in bits and pieces. They rushed her away to the NICU at the Children's Hospital, which seemed a world away, and Rusty went with her, which was something we had decided ahead of time that he would do. I suddenly felt very alone and very afraid, but they took good care of me, and when I was wheeled out of the OR more than an hour later, there was Rusty waiting for me (a worried look on his face, because he was not allowed back in to be with me), and the rest of my family.

Annabel Leora, Friday, March 15, 2013 at 4:47pm - 6lbs, 6 oz, 19.5"

I was in a lot of pain, even with heavy narcotics on board, but I desperately wanted to see my baby. I was not allowed out of bed and Annabel was literally a hospital away (the Children's Hospital and Main Hospital where I was, are connected but are a good distance from each other). There was a medical concern with me and if a particular blood test came back too high I was going to have to have a medication, which meant 24 additional hours in bed, so if I was going to see her I had a small window to do so. So, at 3 am, the earliest I was allowed to get out of bed after having the C-section, my nurse called the NICU at the Children's Hospital, and told them mama was coming to see her baby! She and Rusty wheeled me up the long hill through the hallway that separated the two hospitals. Seeing my baby for the first time was indescribable. I cannot even describe the joy I felt. There she was! My daughter, the baby I had waited all my life and 22 years of marriage for. Thankfully, my medical issue proved to be a false alarm, so I was not put on 24-hour "bed arrest" :-)

seeing Annabel for the first time, me looking every bit as exhausted as I felt

Three days later Annabel had her first surgery - duodenal atresia. The 34 days she spent in the NICU were some of the most stressful times in our life. Little did we know that the next 6 months would be some of the hardest days we would ever endure as we watched our precious baby girl fight for her life. It would rock us to the core, challenging our sanity and our marriage. But we all survived it, and here we are. Annabel is now 13 months old and thriving beautifully!

To Date:

Separate Stays in the hospital: 5

Total Days in the Hospital: 98

Total ER Visits: 4

Number of Surgeries: 4

Thank you from the bottom of our hearts to the countless prayers and unending support from our family, friends and strangers we are not even aware of. We could not have made it through the past year without you, and we are truly grateful for the love we and our precious Annabel have been shown.

December 15, 2012

Our Little Santa Girl @ 22 weeks

I am definitely the kind of person who over-thinks things. I tend to psych myself out in thinking things are going to be much worse, or complicated, than they actually end up being. But when I went for my ultrasound at Vanderbilt on the 10th I honestly did think it would be just a quick routine thing. I didn't think too much about it, having just had a Level 2 ultrasound the week before at the hospital where I thought I was going to deliver (more on that later). In fact, I was actually a bit annoyed that I was having to go through yet another one, particularly since we are now out of network with our insurance, and I have been very concerned about the various costs that we are incurring, which our insurance company has denied coverage for.

Yet again, the day was rainy, dreary and cold. And yet again we were running late thanks to my dear husband who tends to easily lose track of time. I was annoyed, but not particularly nervous, when he dropped me off at the crosswalk and I made my way into the building and up to the 9th floor where he momentarily joined me.

The wait was short and I was called back so they could get my weight and blood pressure before taking us into the ultrasound room. Things were moving very quickly here, and for that I was thankful. We were introduced to Roseanne, who did a wonderful job on my ultrasound - no pain whatsoever, which was a huge relief, and Dr. Bennett - who is the OB/GYN who will oversee my ultrasounds. She was quick to inform us that the pediatric cardiologist had decided that she wants me to deliver at Vanderbilt. My heart sank. Not only did that mean I would lose my precious doctor, but more importantly it meant that they felt Annabel's heart situation warranted her being close to the cardiologist at birth. By now I have come to accept that nothing with this pregnancy is going to go according to plan, and for the most part I'm okay with that. Of course I have a lot of fears over the unknown, but I am also well aware that there is nothing I can do to control any aspect of this and I have to roll with the punches, whatever they may be. People tell me I'm brave, and that they are surprised at how positive I am with everything we've been dealt. I don't consider myself brave because most of the time I'm scared out of my mind, and being positive is all I can be, because what's the alternative? I have to have faith that everything is going to be okay and that some day soon I will be holding my precious baby girl in my arms and looking back on all of this as a very distant memory.

I won't bore you with the specifics of the remainder of the visit, but it went very well and was much more detailed and information-packed than I ever thought. We were there for well over two hours. I can honestly say that I feel 100% okay with being cared for at Vanderbilt. I was treated like I was the only patient in the world. Since we have been given a diagnosis of Down syndrome and a heart condition we are under the care of the Junior League Fetal Center. With all of the stress we have going on in our lives, dealing with the details of scheduling and such is already overwhelming. They take that stress away from me and schedule all of my appointments, including doctor visits, testing, hospital tours and anything else I might need. We met with two of the wonderful ladies from the Fetal Center - Nancy and Patti, and they made me feel so comfortable and well-cared for. I am so very thankful for them and their care and kindness.

I have been assigned a new OB, who I will see for the first time next week. Next month I will be touring the hospital's Labor and Delivery, NICU, Down syndrome clinic, and working with the Fetal Center on my birth plan.

Daddy and Grandpa putting the crib together

On 12/12/12 my fabulous husband and dad set up the nursery with the furniture we had just purchased from Craigslist. We got a wonderful deal on high quality furniture. I love going into Annabel's room and feeling the softness of her clothes, organizing her things and dreaming of the day when she is in her crib, waiting for mama to come get her in the morning. I try to imagine what she will look like, what her voice will sound like. Will she be wailing with impatience, or will she be quietly playing with her toys as she waits?

I have the most wonderful friends and family, and were it not for them I would feel very discouraged and down, but they have kept me in great spirits with their love, prayers and care packages. I am so thankful for everyone's positive spirit and support through this difficult pregnancy. Now that I can feel Annabel's kicks and punches on a regular basis I am enjoying the pregnancy so much more. I no longer live in a constant state of fear, worrying that she's not okay in there. Feeling her move gives me such peace and never ceases to make me smile, even though she often jabs me pretty good when I'm eating, which makes me nauseous! She's a high-spirited girl, and I love that about her.

Until next time I leave you with a few random photos...

Care Package from Angela and Sami

Avocados and Persimmons (not shown) from my Great Uncle in CA - homegrown in his own yard

Almond Cookies and baby socks from Chris and Dick

Adorable doggie magnet toy from Deanette

Doxie Mug from Bonnie

December 4, 2012

Walking across the covered second story walkway from the parking garage I stared straight ahead at the two sets of double doors. I dreaded walking through them. Being at a children's hospital was certainly not a place anyone ever wanted to find themselves.

The day is rainy and overcast. I comment that we've always gotten bad news on beautiful sunny days, so maybe our luck will change. I have never minded the rain, and in fact had slept very peacefully earlier this morning with the bedroom windows open and the rain beating down on the awning outside. I absolutely love sleeping in the rain, and hope Annabel finds it as calming as do I.

Some parents carried babies inside, while others held onto the hands of older children. I tried to guess what was wrong with each child that walked past.

We made our way to the fifth floor cardiac wing and stepped inside. It was surprisingly small, sparsely decorated, and quite honestly dreary. Nowhere in sight were the colorful and cheerful decorations and architectural elements we had seen throughout our journey upstairs. I was disappointed. Did cardiac patients not warrant "pretty"?

A large black woman sat at a desk in the middle of two waiting rooms. I signed in via computer and we took a seat. A few minutes later she called me up to the desk, her tone that of someone who was bored and weary of their job. I filled out a registration form, surprised at the short length of it, then took a seat and waited to be called.

A little girl of around 1 was waiting with her daddy. What would have normally been porcelain baby skin was tinted yellow. Jaundice. But she was happy and smiling, pushing a tiny chair from the children's play area around like a walker. It was evident she was very proud of her accomplishment. Her blonde curls bounced as she walked bow-legged across the room, smiling at everyone who looked her way.

I pictured Annabel doing the same thing and wondered what she will look like, at what age she will be pushing a chair around as she learns to walk. I assume it will be later since children with Down syndrome tend to reach milestones later than non-Ds children. This doesn't bother me, as I am well-aware that there will be delays and that all children, Ds or not, do things in their own time. But nonetheless, I wonder.

My name is called and we - Russell, my mother and I - make our way back to an exam room. The first part of my fetal echo cardiogram will be performed by a fellow, as Vanderbilt is a teaching hospital. Dr J. is a pretty petite blonde with a kind and cheerful smile. I immediately feel at ease with her.

Annabel is once again active, and once again completely uncooperative. Dr. J. has a continuous excellent view of her spine, which is not exactly helpful, but she is able to get some images of the heart. After over an hour of this I am sore and need a bathroom break. She tells she's going to be my cardiologist, Dr. K., who will try to get better images and will then explain to us what she sees.

An hour after that we sit in a room across the hall as Dr. K. explains to us her diagnosis: Atrioventricular Septal Defect (AVSD), which basically means, "Antrioventricular septal defects is characterized by a deficiency of the atrioventricular septum of the heart. They account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome. (About 15 percent to 20 percent of newborns with Down syndrome have an atrioventricular septal defects). Forty-five percent of children with Down syndrome have congenital heart disease. Of these, 35–40% have AV septal defects."

She went on to draw diagrams and explain what exactly this meant. In a nutshell: Annabel's AVSD is "balanced" (no leakage), and should everything continue as is, she will not go into heart failure and should be okay at birth, although she will absolutely require surgery to repair it at 4 or 5 months of age, once her body is large and strong enough to tolerate such a complicated procedure. The thought is terrifying, but at least we have a diagnosis, and the prognosis is usually good.

She goes on to assure me that there was nothing I did to cause it, nor anything I could have done differently to prevent it. Annabel will require frequent check-ups for a while, and then a lifetime of yearly checkups should everything go well. She will be Annabel's cardiologist from here on out, and I feel very secure with that. I like her very well and she really seems to know her stuff, as well as being kind and patient.

She tells us that Vanderbilt has an entire program dedicated to children with Down syndrome, and explains that medicine has come a long way in treating the symptoms of Ds, and therefore life expectancy is higher now (almost that of a non-Ds individual) and quality of life is pretty much like anyone else's.

I have found that my worry about the Down syndrome has been overshadowed by the heart condition, so much so that the Ds no longer bothered me. For a while I even pretended the Ds didn't really exist. But now, facing both of them at the same time, I feel a bit more sorrow. I worry about what Annabel's future will be and how we will help her overcome her challenges. But for now all I can do is be thankful that things aren't worse, because no matter how bad you think things are, there is always someone else going through something much worse. I decide to count my blessings and hope and pray for the best. For the present, that's all I can do.

We leave with an appointment for a follow-up in 6 weeks, and a regained sense of hope.

My mom brought a few things with her - one, a photo of her when she was pregnant with me, and the other, the invitation to my own baby shower 43 years ago.

Mommy and me :-)

November 26, 2012

Having been diagnosed with Symphasis Pubis Dysfunction and in extreme pain when I put any pressure whatsoever on my pelvis (so this means, sitting, walking, standing) I spend some of my time on the sofa with my feet up on an ottoman. Mostly, though, I spend 80-90% of my life in bed. One would think this is is great. I mean, who wouldn't want to be forced to lie around in bed all day watching tv, reading or playing around on the laptop or iPad? Let me tell ya, after a week of this (and maybe even less) you get bored. Utterly and hopelessly bored. And your butt gets sore. You hold your bladder as long as humanly possible (which isn't for long when you're pregnant!) because getting in and our of bed is excruciating.

I spent a few days working on my baby registries, working on the baby shower guest list, and helping my stepmother (who is giving the shower) with choosing the invitations. I was extremely appreciative of the distraction, and hey, it was FUN! It gives me something to look forward to.

I was worried, but not terribly so, about the Level 2 Ultrasound. Mostly, I was just excited to see Annabel again.

The ultrasound was going well and Annabel was very active, being her usual uncooperative self, which always strikes me as funny. I have a feeling she's going to be a stubborn little soul like her Daddy, but it also means she's a fighter, and our little girl needs all the fight in her she can muster.

We saw her lungs, leg and arm bones, brain, fingers, toes, organs and so on. The ultrasound tech, Cecilia again, commented on how great she looked and how she appeared to be right on target with her development. Annabel happily opened her legs several times to verify that she is, in fact, a girl, a fact we already knew, but now had confirmed. Cecilia looked for the typical markers for Down syndrome and saw none. My breath hitched with the possibility that maybe the test had been wrong; maybe Annabel was perfectly fine.

And then she got to her heart, which was the one thing I was most nervous about. Annabel turned her back and refused to cooperate. Cecilia kept trying and was able to see something, but she had grown quiet. Was she worried about something she saw, or was she merely concentrating?

She said she wanted to call the doctor from upstairs and have him take a look. I immediately knew something was wrong and my heart sank. Just a few minutes later he walked into the room with another young woman in tow to observe. There were now 5 of us in the small dark room.

Dr. J. gently moved the wand around my abdomen looking at Annabel's heart. She had grown tired and had fallen asleep, right on her back, which gave the best view. It seemed like hours passed before he finally spoke, his soft voice heavy with a Belgian accent. He rested his hand on my belly in a gesture of comfort, and told us that he had seen a "significant" hole in Annabel's heart. He felt fairly sure this cemented the Down syndrome diagnosis and said he thought she had a Ventricular Septal Defect. He said some other things, too, but I couldn't concentrate on his words. All I heard was "heart defect" and that we would have some "decisions to make". He kept saying how sorry he was, and all I could think about was that my baby, my precious Annabel, was going to die. He asked if we had any questions, keeping his eyes on me the entire time. I could only shake my head no. I couldn't speak. I could barely even breathe. Why was this happening to us? Why did everything have to be so difficult for our baby? For all of use? Why couldn't she be healthy and perfect like most other babies?

We left the room so I could go down the hall to have my vitals taken before going into an exam room for my prenatal visit. I saw Dr. J talking to my OB, Dr. D. They glanced up at us as we left the room. That was when I lost it. Russell and I went into the closest bathroom and he held me as I sobbed. This was just too much; all of it. We had been given this wonderful surprise gift, only to feel it slipping out of our hands.

I gathered myself as best as I could and walked down the hall to the room where the vitals are taken. I could feel the eyes of the office staff on us as we walked by. I'm not one of those women who looks pretty when she cries. I look horrible, with red puffy eyes and snot running down my face. Part of me was embarrassed. but another part didn't care what anyone thought. I remember the girl taking my weight and blood pressure. I didn't speak as she did either. My nurse then came and ushered us quickly back to an exam room to wait for Dr. D. The wait wasn't long, and Dr. D. gave me a hug as she entered the room. I apologized for crying every time I saw her, and she joked that she wasn't the least bit offended, and said she knew she wasn't the most beautiful woman in the work (she's wrong; she is absolutely beautiful, inside and out). In a fog, I barely remember the conversation, and there wasn't much anyway. She told us she might have to transfer me to Vanderbilt to an OB there depending on what the prognosis for the baby ended up being. She clearly hated to lose her patients and said that the only ones she's ever lost to another OB were for heart issues. It felt like another blow. They couldn't take care of Annabel's needs in our in-network hospital, so we would have to go out of network to Vanderbilt. It would be a struggle dealing with our insurance company, who had already refused to pay for certain things with my pregnancy, even though I am high-risk due to my age and weight.

Vanderbilt felt big and scary, but I knew that I would do whatever was necessary to accommodate Annabel's needs. No matter what, she came first.

We left the office with an appointment for a Fetal Echo Cardiogram for the following week at Vanderbilt, a lot of fear, and a lost sense of hope.

My first dress, which my mom kept all these (43) years.

Annabel's new dachshund shoes, handmade in Spain

October 31, 2012

Hugging Kim goodbye I felt a flood of fear. Her visit had provided me with a wonderful distraction that I desperately needed. But now that she was leaving for home and I was leaving for my doctor visit, I felt like a prisoner being returned to my cell.

Walking down the hall to the exam room my doctor's nurse said she had been thinking of of us. I guess people don't get a diagnosis of Down syndrome every day and word had quickly gotten around. Her kindness immediately brought on the tears and I couldn't respond and I walked numbly back to the exam room.

We sat there waiting for a few minutes, me staring blankly at the wall and then turning to my husband. I noticed he was wearing flipflops with socks. He had been in such a hurry to leave that he had forgotten to put on his shoes. I guess he was just as nervous as I was.

My doctor came into the room, took one look at me and immediately embraced me in a hug. That, of course, brought on another onslaught of tears, but this time I couldn't stop them. They continued to flow for the duration of the visit. It was brief; she didn't discuss anything other than the diagnosis and gave us words of encouragement. She kept her hands on my legs the entire time, patting and reassuring. She told us what we could expect, and talked as if she were a friend, not a doctor. She gave me her personal cell phone number and told me to call her any time - day or night. I assured her I would be fine and wouldn't need it, but she just smiled and pressed the card into my hand. "Any time, day or night," she repeated.

She said my pain was probably round ligament pain and I felt satisfied with that explanation. At this point my pain seemed like a drop in the bucket compared to the Down syndrome diagnosis.

We heard the baby's strong heartbeat and I of course felt a huge sense of relief. I had been feeling flutters of movement since 12 weeks, but nothing on a regular basis. I longed for the day when I felt her move all the time. I knew I would feel more secure once that happened. "It won't be long," my doctor assured me.

Russell told her that one of my worse fears was that the baby would die in utero. "Of all the things you could worry about, at this point in the pregnancy that would be the last thing on the list," she assured me. That made me feel somewhat better.

She wanted me to have my Level 2 ultrasound done at 20 weeks, which was 4 weeks away, so we scheduled it along with my routine prenatal visit for the same day. I was a little nervous about it, but didn't give it much thought. The baby had been okay at every ultrasound, her heartbeat strong. She had 2 arms and 2 legs, 4 fingers and 1 thumb on each hand. She looked perfect. Other than her having Down syndrome, what could possibly go wrong? I knew there was a good chance she could have a heart defect, but at the same time I was hopeful that she wouldn't, because honestly, I didn't think I could handle much more heartache.

When we got home I discovered that Kim had cleaned the house before she left. I was so grateful to her for her thoughtfulness and her gesture touched me immensely.

October 30, 2012

On my best friend Kim's last day in town we went to the Cheesecake factory for lunch. We had spent the weekend hanging out watching movies and talking, and I even ventured out of the house a few times. I took her to my eye doctor's office and he and I helped her pick out some awesome new eyeglass frames, which she took back to Michigan to have filled with her prescription.

The distraction of her being her here was good, and I could almost forget about the Down syndrome diagnosis. Almost.

As Russell, Kim and I walked into the Cheesecake Factory the Geneticist, Dr. B. called Russell's phone and told him that for sure...

We decided to turn the lunch into a celebration, complete with cheesecake (of course!) I ate my entire plate of Pasta Carbonara and half a piece of cheesecake, saving the other half for later (hey, don't judge - I'm pregnant and celebrating!)

I worried about going to the doctor in the morning for my routine visit. It was Halloween and Halloween is not exactly one of my favorite "holidays". As a teenager my family had a very horrifying experience on Halloween night when 3 males broke into our house and very near killed my stepfather. They came into my bedroom but were unable to find the light switch because it was behind a dresser. It was a very traumatic experience that has left me with nothing but disdain for Halloween even all these years later. Through the years I tried to put it behind me, taking my kids trick or treating (and even dressing up in costume with them), passing out candy some years (some years I was better able to put it behind better than others), and basically move on. But an experience like that is something you hold onto; it never truly goes away.

I was also in pain, worse than before. It felt like someone had kicked me in the crotch, and I had pain all the way around my abdomen. I worried that something was wrong with the baby.

Red Velvet Cheesecake

October 24, 2012

Russell had left for Phoenix on business the day before. I dreaded him going, fearing we would get the call from the Geneticist and I would be all alone. "She said two weeks," he assured me. It had only been a week, 5 business days since my blood had been sent to San Diego. She wouldn't call. But still, I worried.

The day started off like any other. As usual I was not feeling well, so was lying in bed watching television. I had gotten up to let the dogs outside and when I came back in saw that there was a message on my phone time-stamped 3:26 pm. I didn't recognize the number, but when I listened to the message my heart sank.

"Anne-Marie, this is Dr. B. I have the results of your test in, but I'm getting ready to leave the office. Please call me on my cell phone (she read off the number), otherwise I will call you first thing in the morning."

If the news had been good she would have just said that, right? Giving me her cell phone number definitely wasn't a good sign. I dialed her number with shaking hands. My entire body was, in fact, shaking as I stood in my kitchen leaning against the counter beside the sink. She answered on the first ring.

"The baby does have Down syndrome," she said gently. "Trisomy 21," she added. And then, "I'm so sorry."

I couldn't breathe. I couldn't speak. I began to cry as I braced myself against the counter. I felt the room shift and my legs go weak. "I understand." I said through sobs.

"Is your husband there with you?" she asked, her voice sounding concerned.

"He's in Arizona on business," I was finally able to say.

"When will he be home?"

"Tomorrow night."

"Is there anyone who can be there with you? I don't think you should be alone."

"I'll be okay," I told her, still sobbing and hiccuping. "Are you sure? I mean, is the test... accurate?"

"I feel it is," she said softly. "I'm so sorry," she repeated.

I only nodded. She went on to tell me she wanted to meet with me, discuss my options.

"We're continuing with the pregnancy if that's what you mean," I told her.

"Okay, good. I just wanted to be sure. I have to ask... there are time limits on... termination."

"That's not going to happen."

She said some other things which I don't remember. She repeated herself several times as if she simply wanted to keep me on the phone. Her voice sounded very far away and I could barely hear her over the pounding in my head. I wanted to get off the phone with her. I wanted to cry and scream and I didn't think I could hold it together much longer. I then remembered that the MaterniT21 test now tested for the Y chromosome. "Was there a Y chromosome?" I asked her. I at least wanted to know if the baby I was carrying was a boy or a girl.

"I don't think so, but I'll have to check when I get back to the office in the morning. I'm fairly certain your baby is a girl."

I thanked her, ended the call and stood in the kitchen and sobbed body-wracking sobs that could probably be heard several houses up. I called Russell, who thankfully answered on the third ring. I was sobbing and hysterical and I'm sure he thought something really horrible had happened. It had. "The baby... she thinks it's a girl... has... Down syndrome..." I finally managed to say. There was a moment of silence on the other end of the phone and then...

"It's okay; we'll love her no matter what. This doesn't change anything. It's going to be okay. I love you."

I don't remember much about the next two days. I remember emailing my mother and telling her the news, then texting a few other close family members and my best friend. Russell called my dad and told him. I couldn't talk to anyone in person. For two days I cried non-stop for hours at a time. It truly felt like my heart was being ripped from my chest. I vacillated between extreme grief and extreme anger. I hated everyone who so easily had perfect pregnancies and perfect babies. I hate God for allowing this to happen after all we'd been through for the past 22 years. I then felt like a horrible person for feeling like that and would spend the next few hours feeling the grief, along with guilt, all over again. Dr. B.'s words repeated over and over in my head, and they still do - "The baby does have Down syndrome." I can hear it like it just happened 2 seconds ago. And every time I do I feel the pain all over again. I'm not sure it's something I will ever forget.

I have always wanted a baby who looked like us and I worried that this baby would not. She would look different. Would I even recognize her as my daughter? What about health problems? Would her heart be okay? I'd heard that half of all babies born with Down syndrome have heart defects. And most importantly, I worried about her future. What will happen to her when we are too old to take care of her? Will she need lifelong care? There were too many questions that I didn't have answers to, and I once more felt out of control and terrified.

I also felt like I had failed - I failed myself, I failed my family, and most of all, I failed my baby by conceiving her with my old imperfect eggs.

My parents do not have biological grandchildren and I desperately wanted to give them that experience. I felt like I had let them down. I felt like I had let my husband down. It's my fault I told myself over and over. Will my daughter hate me for bringing her into this world different than everyone else? Would people accept her and love her despite her differences?

I had no doubt about loving her; I already did. But I needed time to mourn the loss of the child I thought I was going to have. I needed time to process everything and at this point I was quite sure I would never recover from this devastating blow.

When I texted my best friend Kim to let her know, she was at work and went into the bathroom and cried with me. She offered to leave work at that very minute and make the 7 1/2 hour drive then and there to be with me. We had already planned our yearly girl's weekend and she would be arriving on Saturday. I assured her I was okay, I just needed time. I warned her that I would likely be the worst company ever, crying at the drop of a hat. "It's okay - we'll just hang out in our pajamas all weekend," she assured me.

One of the vague recollections of those two days after hearing the diagnosis was of Googling pictures of babies and children with Down syndrome. I read blogs and looked at statistics. Everything made me cry, especially when I learned that 9 out of 10 babies who are diagnosed with Down syndrome prenatally are aborted. It was a shocking statistic.

My family respected my wishes for no phone calls, but they did text and email to make sure I was doing okay. They also assured me that no matter what they would love their grandchild unconditionally. Nothing had changed.

But it had; to me, everything had changed. I wanted to shut myself off from the rest of the world forever. I didn't want Kim to come. I wanted to be alone to continue wallowing in self pity and grief, but I knew that wasn't healthy because I could feel myself easily sinking into a pit of depression. I needed her to come and bring me out of my funk. I needed a distraction. I needed my best friend.

October 17, 2012

We sit in the Genetic MD's office which overlooks the second story side of the building. There are large trees outside and their leaves are beautiful Fall shades of oranges and reds. I am nervous, not knowing what exactly to expect.

I immediately recognize the doctor's heavy accent as Argentinian; my paternal grandfather had the same accent. She pulls out a blank piece of white paper and writes our names down at the top of the sheet. She shares with me that her name is Ana Maria, "so basically the same name as yours," she tells me, smiling. I immediately feel at ease with her. She then proceeds to take down our family history in a family tree type of flow chart. Our family history looks good, no red flags. She then tells us that she recommends a new test, a simple blood test, non-invasive, that will give us a 98-99% accuracy rate for Trisomy 13, 18 and 21. Handing us a brochure she says she feels comfortable with the test and highly recommends it. The test is called MaterniT21 and is conducted by a company in San Diego, CA called Sequenom. We feel this is the route to go.

The test is expensive, about $2500, but because I am of AMA (Advanced Maternal Age) our insurance should cover it. She assures us the most we will pay out of pocket is $235.

She tells us that it usually takes about 2 weeks to get the results, which she will call us with as soon as she knows. 2 vials of blood later we leave her office feeling nervous about the results, but secure in our decision.

October 12, 2012

Since Russell had to work I took my mother and mother in-law with me to the ultrasound. This time we were upstairs in the regular ultrasound clinic. I had a different technician this time and she was quick to conclude that the baby was still not going to cooperate. We would have to do a different genetic test. She briefly mentioned a new test that they had just started performing this year. It was non-invasive, a simple blood test. What could be easier? I had heard about the CVS (Chorionic Villus Sampling) and had decided I didn't want to do it as it is invasive and carries a slight risk of miscarriage. This new test seemed perfect.

The technician suggested we make an appointment with the Geneticist for the following week and she would go over our options with us.

When had birthing babies become so complicated? Numerous ultrasounds, genetic counseling, blood tests to check for Trisomies? It all seemed so overwhelming, and I once more felt as if I were in high school. Would I pass the test? And if I didn't would fingers be pointed at me for doing something wrong and harming my precious baby? I worried endlessly over every little ache and pain, every possible (bad) scenario playing over and over again in my mind.

I worried about giving birth having heard horror stories of women dying. Would a C-section be easier? What if the epidural didn't work on me because of my weight? I didn't want to be cut open either. I had visions of storks and cabbage patches and wished the fairy tales were reality. All of this just seemed so difficult. I felt guilty for not being stronger; for not being that super mommy who can give birth in a cave with a war raging in the background through 48 hours of labor and no pain meds. I was scared.

I am a planner. I don't like surprises. I felt out of control. I didn't plan any of this - not the pregnancy, and certainly not the extreme amount of medical attention I was receiving. I wanted this baby more than anything, but this wasn't the pretty picture I had always painted of pregnancy. I would have preferred to stay peacefully oblivious.

Over and over I have been told to not stress as it's bad for the baby. Let me just say, pregnancy is one of the most stressful times in your life! And the stress was just beginning...

October 8, 2012

I lay on the exam table in the ultrasound room. This room seemed much smaller than the main ultrasound clinic upstairs. It was filled not only with the very large machine itself, but with a desk, complete with computer, printer and everything else one would need in an office. The room was, of course, dark but cozy, as Cecilia squirted warm jelly onto my belly and pressed the ultrasound wand to my abdomen.

Having a typical PCOS belly (in other words, lots of abdominal fat) I worried that she wouldn't be able to get a clear picture of the baby, but I was wrong. She moved the wand around just a little and all of a sudden there she was on the screen, protesting at the intrusion as Cecilia pressed the wand into my belly. "There's that little cutie pie!" Cecilia exclaimed. Tears of relief sprang to my eyes, but didn't fall as I watched our baby wiggle and squirm on the screen. She moved her arms around, kicked out tiny legs, her heart steady and strong, the sound musical and very much like the clomp of a racehorse.

Cecilia moved the wand expertly around scrutinizing various parts of the baby's body, assuring us that everything looked good. Every so often she would freeze the image and take a measurement. I don't know what she was specifically looking for and I didn't ask. I simply lay there mesmerized by the image of that tiny little person who was growing inside of me. Every so often she would raise one little arm as if waving or giving a high-five. Cecilia commented several times that she saw a very strong nasal bone, a good sign that Down syndrome was not present. I felt relief, but had also done enough research to know that the presence of a nasal bone didn't necessarily mean the baby did not have Ds, it simply was a soft marker for it if there was an absence of one.

When the baby decided she'd had enough she turned on her back and went to sleep, ending Cecilia's search for the elusive nuchal fold on the back of her neck, which was the whole reason we were there. My belly was shaken and prodded and pressed to the point of pain, yet still our stubborn little one refused to cooperate. The procedure was very long and the pain was very intense at times. As much as I enjoyed seeing little Cracker Jack on the screen I was relieved when it was over.

We made an appointment for a few days later, a Friday, to see if the baby would cooperate and allow them to get the measurement.

Back home, I spent the remainder of the day sitting on the sofa trying not to move. I was very sore from the ultrasound, and in hindsight the pain was one of the first indicators that I was developing Symphasis Pelvic Dysfunction. But I was happy. I not only had video of the ultrasound, but I had a cute little picture of our sweetie pie that I looked at over and over. Life was good.

September 29 - October 6, 2012

The 745 mile trip to the Outer Banks, NC was a difficult one. I was nauseated, uncomfortable, and had to stop for frequent bathroom breaks. The never-ending rain didn't help much either. But I couldn't wait to get there and see my beautiful Outer Banks. It had been a year since we'd been there, having opted for a less expensive vacation in March.

The beach house had gone through some welcome renovations and I walked around excitedly checking them out while Russell carried everything upstairs. Cookie and Max immediately found their places on the sofa while Rufus and Olivia checked out the new toys in the toybox. Bailey, our resident Barney Fife, took up residence on the front deck, running back and forth while keeping a watchful eye on his temporary property.

We normally spend the week traveling around the island, doing all of our usual things, visiting our traditional places. But this week I was feeling so poorly that I ended up parked on the sofa or deck most of the time while my dear husband got takeout or cooked our meals. The normally simple act of walking on the beach was difficult for me, so sadly, I only did it twice.

But overlooking that ocean we chose the name for our baby if she turned out to be a girl. We had already decided on the name Leora for her middle name, after my maternal grandmother's middle name. We heard the name Annabella on television and we both commented on what a beautiful name it was. It brought up memories of one of my favorite poems, Annabel Lee by Edgar Allen Poe. Russell and I met in high school and I fondly remember our English teacher, Mrs. Coon, reading the poem to us. She was an older woman, a romantic although it was often masked by a harder edge. She pushed her students to be the best they could be. I didn't appreciate her until years later, and today I appreciate her even more. I think she would be surprised, but proud, of my chosen profession as a writer, and I wish I could tell her how much of an influence she was on me.

So, at this beautiful cottage by the sea, the name Annabel Leora was chosen. The poem is a tragic love story, Poe's last published work. And just as our Annabel already is, Poe's Annabel Lee was loved beyond measure!

On Wednesday my doctor's nurse called to let me know they had gotten the results from my routine tests back and I had a UTI. No wonder I felt so bad! She called in a prescription to a local CVS. I hoped and prayed the antibiotics would help me feel better. Of course it didn't take away the nausea, but it did take away most of the back pain, and for that I was so thankful.

On one of our last days there we went to Manteo, ate lunch and sat on the benches overlooking the harbor. That was one of my favorite days there; just sitting there enjoying the weather and each other's company. During this trip I had thought a lot about how this would be our last vacation without a little one in tow. The thought brought tears to my eyes. I couldn't wait to show our baby the ocean, place her little feet in the warm sand for the first time, and hear her laugh at the seagulls as they laughed back. Along with the additions of the beach house they owners had even added a brand new Pack and Play, all folded up and waiting for us the next time we visited. It was as if it was meant to be!

On the way back to the house Russell asked if I wanted to go to the Coach outlet. It is usually on the top of my list of places I want to go, but this time I just didn't have the desire. But my husband has always had a mind of his own, and he pulled into the parking lot anyway and parked right in front of the door. He wanted to look for a diaper bag. So terrified that something would go wrong, I had been very reluctant to buy anything for the baby. I knew it was ridiculous to be so superstitious, but when you want something so badly and are terrified it's going to be taken away from you at any moment, your mind goes to some really dark places.

Before we adopted our (now adult) children from Russia we had several failed adoptions. We had bought the crib, the bedding, the stroller and carseat, the clothes and the toys. We had a diaper service lined up and our dreams were big. But it was not meant to be. A few years ago I finally got rid of everything we had stored away for that baby who was not meant to be ours. It was one of the most difficult things I have ever done. The crib was not just a crib, nor the stroller simply a stroller. It represented so much more, and parting with those things signified something I was not ready to give up.

And now, as I stood there in the Coach store, all those memories came flooding back. Did we dare buy something for this baby or would I be packing that up as well? I kept telling myself this time was different. This was our baby and no one could take her away from us.

We left the store with a beautiful turquoise diaper bag, chosen by my husband. When we got back to the beach house I looked at the tag to discover the name of the color was "Mermaid" - how perfectly fitting.

To me, that diaper bag represented hope and possibility and a dream that was finally being fulfilled.

Today it sits in the baby's room, still in the big white Coach bag with the red writing, looking just as it did when I carried it out of the store. In my mind I have decided exactly how I am going to pack each item inside. I cannot wait to use it.