Calling All Angels

Both of my parents were teachers. My dad taught history, and my mom's love was music. My dad's dad was superintendent of schools and coach to the all-state football team on which my dad played. I grew up "knowing" I would be a teacher: It seemed to be the only path. So when I was in high school I took some classes that were meant to prep young teachers-to-be and, more importantly, solidify our commitment to the field. My senior year I had a half day of traditional classes and spent the after lunch hours as a teacher's aid at the Special Education Learning Facility because I was going to change the world, one learning disability at a time.

First of all, like most of my retail career, the training for this gig was nonexistent, what I would categorize as sink or swim. I truly believe that a great deal of the experience was so traumatic to me that I blanked it out, but I will tell as much as I can remember. One thing that I never expected, however I have since then learned to be the norm, is that all of these children were lumped into one classroom, regardless of their cognitive abilities and perceived future. I think they were all about 7 years old, and their diagnoses ran everywhere from hearing impaired to Down's Syndrome to autism to some things that were terminal, and they actually passed away during my short tenure there.

We had a routine that we followed every day like clock work. I remember all of the kids sitting around a long table and writing out their ABC's. Although they did this task every day without fail, some could not grasp it. Some were quite good and made it all of the way through with only some dyslexic B's and P's. Any small achievements were rewarded, and I am sad to say, lack of achievement was ridiculed. Before the buses came to pick them up, I was in charge of story time. Twenty special kids huddled around me on the floor as I read to them and took them to a place where prejudice didn't exist. After my story we would sing songs, and every kid in there could sign the words to every song. The majority of these children did not need sign language to communicate, but their music teacher had incorporated it into the curriculum to help the deaf children participate. I found this completely amazing! How could one write the alphabet day after day and never get better at it but, on the other hand, learn such an intricate way of communicating with such ease?

In the end I left the Special Education Learning Facility with a bad taste in my mouth. I often overheard the teachers making fun of the children and calling them stupid. It completely broke my heart. When I confronted them about what I felt was cruel and inappropriate, they told me that it was the only way they could keep their sanity and told me that I would understand if I continued my career path. I chose to abandon their shallow, cowardly selves, my career path, and unfortunately, the children. It was more than this 17 year-old could take. I went on to college, changed my major to French and International Economics, and never looked back.

Twenty-two years later I was happily married and pursuing my dream of mommyhood, not knowing that the rug was about to be pulled out from under us. When our NT scan came back a bit suspicious, I took solace in the fact that our baby showed no physical signs of a chromosome disorder and signed up for the amnio to put my mind at ease. The day of the amnio we learned that our"little girl" was, in fact, a little man. "Really, a penis? Are you sure?" The ultrasound tech pointed to a blob on the screen that was in some way supposed to reveal to me the sex of our child. I suddenly felt a strange rush, not unlike how I feel at work when I am given a project that is a bit overwhelming. A challenge. A little boy. See I don't know anything about them. I am an only child as was my mother. My father passed away when I was three, so I have been raised by all women with the exception of two amazing grandfathers. I never even babysat little boys. I know nothing of that skill that involves changing a diaper without getting squirted in the face. Three days later, Pierce had the dubious task of informing me that my "challenge" was about to catapult me into a different dimension: Little Boy Sunshine has Down's Syndrome.

The day started with a routine visit to the OB/GYN to pee in a cup, give some blood, and hear his heartbeat (a sound that never gets old). Pierce and I left the office, and as we were walking to the car he noticed that he had a voicemail. It was the high risk doctor asking him to return his call at our convenience. I had 15 minutes to spare, so I felt sure that he could call, get the reassuring news that the baby was fine, and I could still make it to work on time. Then the phone games began. Apparently, the moron receptionist at the doctor's office had set the phone to go straight to voice mail. This continued for three hours. I went to work. I received the call around 2:30, contacted my boss, and left as quickly as my shaking legs would carry me.

And now we grieve the loss of what we thought would be and face an uncertain future. Oddly it feels a bit like the day I moved out of my ex husband's house, nearly 6 years ago. At least now I have a wonderful husband to pick me up when I fall flat on my face. Now begins a battery of tests and many specialists who will work to make sure this little life is as good as it possibly can be. In my desperate research yesterday I uncovered a fact that made my blood run cold: 92% of all pregnancies with Down's babies are terminated. 92 is HUGE! Don't get me wrong: I am not about to get on some soap box, blasting abortion and a woman's right to choose. I do believe these are personal decisions, and I have never faulted anyone for the choices they have felt they needed to make. But really....if I were 92% of the population this little guy would never take a breath in the outside world, would never know how much his mommy and daddy love him, would never be given the opportunities that "normal" duo chromosome children are given. Is the whole world just sitting back and waiting to laugh at him and call him stupid?

I have had 16 hours, not nearly long enough, to digest all of this. I have questioned my decisions to pursue having a child through IVF and putting us all through so much. I have questioned my decision in college to become a smoker and regretted how long that habit stayed part of my life. I have questioned whether my thyroid was well enough under control when we conceived, and if there was more we could have done. I have wondered if Baby Boy Sunshine's twin had Down's too. And if our snowbaby has the same disorder. I have also wondered how 3 beautiful blastocysts that the embryologist had deemed, "the most perfect I have ever seen" could be imperfect little people by society's standards. Dr. Google has taken away some of the pressure and assured me that my lifestyle did nothing to contribute to this situation. It is a completely random occurrence that presents itself more frequently in women of advanced maternal age (35+).

As we continue to sort through all of this and cope in the only ways we know how, I remind myself that we are still being blessed with a child, a miracle from God. He may not be just like so many other children, but he is our miracle and God is giving him to us for a reason. If he wasn't meant to come in to this world, he would have passed with his sister and his heart wouldn't be so strong. He is so strong, and I must learn to be as well. One of my dear Nestie friends sent me the most beautiful piece last night that really helped put things in perspective. I love her for thinking to send it to me. I hope you all enjoy it as much.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by Emily Kingsley

written about having a child with DS.

Amnio Anxiety

I tossed and turned for two hours this morning before finally crawling out of bed. In those two hours I rubbed my slowly growing belly, prayed (maybe more like begged) for our baby's health and safety, listened to the little snores and soft grumblings of Pierce as he slept, and scolded the cat for getting a little too curious about my glass of water on the nightstand. It's 6AM, and I feel like I have had a full day already!

I actually fell asleep easily last night, and I remember thinking that I was remarkably calm about today's appointment. I guess I just needed a little nap before I woke up and realized that today is THE DAY. I keep focusing on the fact that today we will know if Baby Sunshine is a girl or a boy, and that is so exciting! Somehow in focusing on this I am able to forget about the large needle in my belly, the 1 in 300 chance of miscarriage, and the daunting wait for the lab results. I keep reminding myself that women do this every day, and things are completely fine. The doctor himself said that she appeared to be fine on the ultrasound. I have to believe that God would not have allowed this pregnancy to progress this far if there was anything wrong with Baby Sunshine. We lost Baby B (we have decided to name her Savannah), and I believe that she most likely did have some sort of abnormality or she would be growing along with her sibling. Of course I have no way of knowing for sure, but this is the only way I can keep my sanity through this scary time.

I will give the report in a few days when I am allowed to be mobile again. Our appointment is in 2 hours, and then it is off to 48 hours of bed rest. I need to catch up on my reading anyway.

14 Weeks and counting..................

Despite the fact that I am no longer feeling nasty and having strange food aversions, I am still so crazy tired! I fear my thyroid is still not quite on track, so we will be looking it to this again next appointment. Hmmm, where did I leave off??? Oh right. The NT scan. Well, it didn't really go how we had hoped. Little One's NT measured somewhere around a 3.5, and they like to see it below 2.5. In fact they didn't even take my blood because they said that the blood results would not be enough to lower our risk given the measurement. Ouch! Fortunately, we had quite possibly the cutest and kindest doctor possible giving us this information. Once I was in tears, he was quick to remind us that this is all about risks and does not mean that there is anything certain wrong with our baby. I have to remind myself that he said this because it is awful hard to remember anything else he said after the initial blow.

Dr. Cutie also proceeded with a complete anatomy scan of our baby after this news and informed us that she looks perfect. Heart is beating well and has all 4 ventricles. Brain is properly formed and blood is pumping through all of the lobes. Kidneys are formed and functioning. She looks "like a very healthy, normal 12 week baby, " he said. We are still saying "she" because our little one was very stubborn (I have no idea where she gets this from!) at our appointment, and it was difficult to get an accurate view between the legs. The doctor explained his technique for determining the sex this early in the game, and we all stared at the ultrasound screen long and hard. He said his best guess at this point was that she is in fact a girl. I look forward to setting this record straight, once and for all, very soon. Which leads me to the scary topic of "further testing".

I never wanted to have to go here, but somehow I found myself agreeing to having an amnio. I guess the decision was easy given the choice between amnio and CVS. I know 2 people who have lost perfectly healthy babies from complications with CVS, and I also know plenty of ladies who have had no problems with it all. I remain scared shitless of the thought of it, and to make things worse, the doctor mentioned that it might be a little more difficult as they would have to maneuver around the sac of Baby B. No thanks. I'll take the giant needle in my stomach. That appointment is set for August 10th after more crazy controversy at work over when I could be allowed 2 days off in a row. Good times! If anyone can spare any prayers or good thoughts for Baby Sunshine, I would greatly appreciate it. We have come so far and prayed so long for this little baby that the thought of anything being wrong with her is more than I can bear.

In happier news, I turned 40 last week and entered the second trimester! Yay!!! For my birthday I decided to order a doppler from babybeatdotcom, so that we could keep tabs on the munchkin between appointments. It's really awesome! We haven't had any trouble finding her heartbeat, and it continues to be a strong and rhythmic 143-150 bpm. It makes us smile every time we hear it, and if we ever figure out how to download the recording I will post it in the blog. Pierce spent a good chunk of time yesterday looking at tutorials on the Mac and trying to figure out how to make it work, but no go.

I have so much more to share but will end this here for now. I am once again taking a vow to be better about keeping up with our little blog. I want Baby Sunshine to know all of the details, good and bad, and know how very much Mommy and Daddy have loved her for so very long.

Waiting for the placenta reprieve....

They say that around 11 weeks I should start feeling remarkably better because the placenta will be up and running and taking care of little one's hormone needs. We are 11 weeks today, and I am so ready! I have spent a perfectly good holiday weekend on the couch, playing the "What sounds good" game with my digestive system. Pierce and I have been convinced that the baby is a girl for awhile now, and yesterday I mentioned that maybe we should stop thinking that in case she is a boy. Pierce is convinced that ever since I said that out loud, she has been pissed at me for calling her a boy and is making my existence a living hell. So, please, may this go on the record as my official written apology to Baby Sunshine. I am sorry, Sweetheart, and I will not make assumptions until you have identifiable parts. You are daddy's little girl until a sonogram tells us otherwise.

Unbelievably, we will have an 80% guess as to the baby's sex this Friday! Now, I don't think I can go out and register based on an 80%, but I thought we would have to wait until 20 weeks for any kind of determination. This Friday is also the BIG TEST. We will find out if our baby is at a higher risk for Down's Syndrome and several other chromosome defects. We already know we are at a higher risk going into it because of my age, so all I can do is continue to pray. I think once we get past this one, I will be able to enjoy this time a little bit more. Maybe the magic placenta can kick in on the same day, and next Saturday I will wake up feeling amazing. A girl can dream.

We did see our little one on Thursday. This was our first experience with the "on top of my tummy" sonogram. She mentioned that it may not work, and we might have to rely on my old friend but it worked like a charm! No sooner had she rubbed the gel on me and pressed down on the transmitter that I saw a very active Baby Sunshine coming in to focus. The tech laughed and said we have a very happy baby because she was dancing and waving her arms at us. After she mellowed out a bit, she started sucking her thumb. The fact that she is 1 3/4" long, and we can tell all of that, is completely amazing to me. We can even make out a pretty good profile on one of the sonogram pics. Pierce said she has a big nose. I am thinking maybe it's just growing faster, and the rest of her face will catch up. She's only been cooking for 64 days!

I will update on Friday when we get home. My OB/GYN said that the sonogram shots they will get for these tests will be amazing compared to anything I have seen in her office. We'll see what that nose looks like then. I am sure it will be perfect.

Jennifer Jeanne

October 28-November 5, 1978. She was my baby sister. She was born very premature and weighed 3 lbs. Her lungs were not mature, and after 8 days on machines my mom and stepmonster let her go. I know I didn't understand a lot of what happened since I was only 9 years old, but I really had a hard time forgiving them for that, sometimes wonder if I ever really have. She was my last chance to not be an only child, and there was nothing I wanted more.

I always knew that I would never have an only child. I could not put that burden and that loneliness on another. I know it wasn't intentional, as my parents wanted "at least 4", but now I am beginning to fear that history may repeat itself. My mom had an incompetent cervix, which she says was the result of a bad IUD, and lost at least 3 babies that I know about. Jennifer and I were the only ones to make it to this world. I, on the other hand, can apparently only get pregnant through extremely expensive medical intervention. So far so good, and knock on wood, our little one, our only child, will make it here safe and sound. Me, the lonely only child, loved the idea that there were going to be two babies born at once, loved the idea that they would have a bond that no other could ever break and that neither would ever feel alone. I didn't actually think a lot about the chances of twins when we put back two embryos. Two just seemed like more insurance to get one. But that all changed when I learned there were two.

It seems so obvious that Jennifer would enter my thoughts on the eve of the day that Baby B no longer had a heartbeat, but somehow I feel like she's been watching over this entire IVF process. I think I mentioned several entries back that I had a dream about her between our retrieval and transfer. In my dream she was sending me text messages from the ARTS lab, letting me know that she was there, watching over and taking care of our embryos. As absurd as it sounds, it made me feel better. I had really hoped that we would be able to donate our snowbaby to another couple in need, but it looks like we may be that couple. Jenny Girl, I'm going to need you to watch that little one for a couple of years.

Saying goodbye to our twin breaks my heart, but I know that over time it will be easier. I know from the experience with Jennifer that the grief never really goes away. It becomes a manageable part of me that makes me stronger and appreciative of all that I do have. I am grateful that it happened early and will not cause any trouble for our healthy baby. I am extremely grateful that I am not facing burying my child. There is nothing that haunts me more than the vision of a tiny, white casket that one man carried my sister in to the cemetery. It is something that should never happen, but over the last year and half on the Bump I have learned that it happens, unfortunately, all of the time.

I think I am finally able to forgive my mom for letting her go. It wasn't her fault. Bad things happen to good people. I wasn't supposed to be an only child: it just worked out that way. I will still do everything in my power to make sure that this little one has a sibling. Hopefully our snowbaby will survive the thaw and join our family in a couple of years. A second IVF seems quite out of our reach, and my eggs could take a turn for the worse in the next year. All I can concern myself with right now is the one perfect baby that is thriving inside me and expected to be here January 23. This needs to be my focus.

We'll miss you, Baby B, and you will never be forgotten.

No easy answer

So it looks like the 84% of you who voted twins were absolutely right; however, based on how tiny Baby B is the doctors give us little hope that we will ever be holding twins. Baby A is measuring 2 days ahead (7w5d at last week's sono) and has a fantastic heartbeat of 156 bpm! Baby B was measuring 6w1d and had a very slow heartbeat of 54 bpm. My heart sunk. How could one of my babies be doing so well and the other be barely clinging to life? I am also beginning to wonder about the people in which I have chosen to confide this information. I have actually had two people say to me, "Well, at least you've still got one" and "You could have had none." Does anyone here really think I am so fucking ungrateful as to not appreciate the one perfect baby that I am actually beginning to believe I will give birth to in January? Is it not possible that I could be truly 100% appreciative of this little miracle but at the same time be equally as sad that my other baby may never grow up as part of our family? Is it OK to say such horrible things simply because someone has yet to be born? If someone had two teenagers, and one of them was killed by a drunk driver would you ever say to that person, "Well, at least you've still got one" or "it could have been both of them"? So stupid and hurtful. I need new friends.

I managed to survive our annual work convention without any questions. There were a few raised eyebrows and I am sure many rumors started as I continuously turned down cocktails. After partaking in eight years of these fun fashion presentations followed by many late nights of drunken walks of shame, I would be fairly naive to escape without question. The funny thing is that I am always completely wiped out after the convention, and I always assumed it was from the late night antics. Turns out being 8 weeks pregnant makes you feel equally as tired and hungover. Hmmm....Don't worry everyone: If I am lucky enough to still be employed next year, I will more that make up for this year.

So, tomorrow we will go back to the OBGYN. I am excited to see Baby A again and hear the beautiful heartbeat. I am terrified to see what's going on with Baby B. We have been told of the "vanishing twin" phenomenon and that it is possible that I will go in for the sono and the other baby will simply be gone. No bleeding, no pain, simply absorbed by my body and gone. And then there's Mr. Optimism, my dear husband, who believes that Baby B will have a stronger heartbeat and will have grown significantly over the past week. I love him so very much, and God knows I want to believe what he believes. It's just so hard. What lesson is God trying to teach me here? Does He believe that carrying twins to term would be too physically demanding on me and threaten my health? Does He feel we can't afford two babies and would struggle too much? Does Baby B have Down's or Trisomy 13, and this is all part of Darwin's law? I may never know. For now it's just one day at a time.

I will be napping this afternoon!

Pierce left for work at 3:45am, and I have been awake ever since.  I didn't wake up when we got up or when he was getting ready, but that little "ding ding" sound the alarm makes when the garage door goes down put me a in a state of tossing/turning, getting up to pee, playing with the cat for awhile, and now, I guess, blogging.

Ultrasound/sonogram, whatever it is called, is in 3 hours and 45 minutes.  As if I am not anxious enough already, our RE has moved his office and I am not entirely sure where I am going.  It's actually pretty comical because we live just north of XX St., we are 2 stoplights away.  The RE's office is also on XX St., but it's a really long road that changes direction and loops around into another city and, almost, another county!  You would think if all I need to do is get on one road and go that I would be perfectly fine.  Hmmm....maybe I will.  But I think maybe is a bit clouded by thoughts of 

*will there be a heartbeat?

*what if they don't see anything?

*what if the first thing out of the doctor's mouth is "I'm so sorry"

*what if everything looks perfect?

*exactly how many babies are in there?

*when do I graduate to the OB?

*when can we stop the torturous PIO shots?

*is my thyroid/blood pressure OK?

Yes, I worry a lot.  I wish I could be like any number of other girls on the Bump boards who pee on a stick, get there BFP and announce it with a full-blown ticker right away.  I admire that confidence, or maybe a lot of it is innocence.  I have never had a miscarriage, yet I am in constant fear that something will go wrong with this pregnancy.  I have seen this crippling fear in many ladies who have lost babies, but I find it very confusing that I have adopted it in some form.  I think it's a combination of all of the months of let downs, all of the tests coming back normal and offering no clues as to why we weren't getting pregnant, and all of the time and, not to forget, the money we put in to this journey.  We are very fortunate not to be up to our eyeballs in infertility debt.  I think it's like when you become a teenager, and your parents tell you to go get a part time job and earn your own money because if you have to work hard for something and pay for it yourself, you will appreciate it more.  I am in no way implying that ladies who have gotten pregnant easily don't appreciate their babies.  I am simply saying that those ladies will never understand my heartache.  And for that I am extremely grateful.  I would wish it on no one.

I hope that today's ultra-gram/sono-sound will give me some sense of peace.  I really want to celebrate this miracle(s).  Not with the world, not yet, but with my husband, mom, grandma, and cat.  If all is well on my birthday, then we will let the world share in our sunshine.  Now that it is only 3 hours until our appointment at the mysterious location, it is time for me to shower and make all parts pretty and clean.  I'm not entirely sure if today involves over-the-belly action or my good 'ole friend, the dildo cam.  Either way, don't want to scare anyone!