Abbie Graduated!

Abbie graduated from our early intervention program, Birth To Three, in November.

But apparently, I forgot to post about it.

Prompted by something I saw on BlogHer's Facebook page, I went back in my blog archives and lo and behold, nothing was there.

Must've been the turkey that made me too sleepy to do it in November, or Christmas and Hannah's birthday in December or, until now, the snow in January.

So, yeah, Abbie graduated from Birth To Three a year early. What does that mean? Basically:

She's not delayed. She does not need their services.

Can I hear an "Amen" or "Praise the Lord" from somebody?

Because really, almost 3 years ago we faced such uncertainty that I stand in awe that this child who, according to the textbooks should have had a lot more difficulty, is doing so excellently well. She could've had a trache. She was very close to getting a g-tube for feeding. We were told to plan for her to be in the hospital 3 to 6 months when she was born.

We had to work with her feeding issues and a bit with her speech skills, but this girl was determined and worked hard. She just plugged on through, not knowing that she was "supposed" to have challenges. Because Abbie? She just made it work. Be it the thicker tongue or the 5 cm difference in the length of her legs. To hear her talk and to see her walk, run and climb... well, it's pure joy.

This is why I need a degree in genetics.

When people ask me about Abbie and her condition, it's really hard to explain. When I asked her awesome geneticist, even he said it was hard to explain, so it made me feel a lot better that I'm usually at a loss for words because if a geneticist says it's hard to explain, then it's hard! I felt a lot less dumb walking out of his office that day.

If you research Beckwith-Wiedemann Syndrome on Google, this link will likely be at the top of the list:

http://en.wikipedia.org/wiki/Beckwith-Wiedemann_syndrome#Genetics

Thankfully, they define some of the clinical terms, such as macroglossia (large tongue), but they don't define them all. Example: hemihypertrophy (part of the body being larger than other parts, affecting either one body part, such as a hand, or an entire side of the body).

But when you get into the genetics of it, it'll make your head spin:

http://en.wikipedia.org/wiki/H19_(gene)

http://en.wikipedia.org/wiki/LIT1

http://en.wikipedia.org/wiki/Cyclin-dependent_kinase_inhibitor_1C

So what is my standard answer when people ask what Beckwith-Wiedemann Syndrome is? More or less, it goes something like this:

In the early part of the pregnancy, some of the chemicals or amino acids or those basic things got messed up. The parts of her genes that are supposed to send a signal to the cells to start growing, then stop, didn't stop properly. So, the caused a chain reaction and it caused her to have the issues such as one side of her body being larger than the other, her tongue to be large and her intestines to be outside her body.

I'm sure this is wrong on so many levels, but for now, it's the best way I know how to explain.

Sometimes I forget.

Sometimes I forget Abbie has BWS. Over the last 2 years and the numerous appointments with doctors, specialists, experts and lab & ultrasound techs, you'd never think that I would forget, but actually most of the time, I do.

Because Abbie is Abbie. Plain and simple.

I set out telling everyone that BWS doesn't define Abbie and it never has. It doesn't mean that I am blind to her challenges. It means that she is my child. I won't let her slide because of the BWS but also, I will do everything in my power to make sure she gets everything she needs to make this diagnosis more manageable in her everyday life.

Most days, I am just dealing with typical two-year-old behavior. I play the referee to the girls' bickering. I have to reel her in because she doesn't know fear. We read books. We play. I give her baths and make her meals and have the same everyday normal life that most moms do.

Then there are the days when it occurs to me that she's tripping more.

The day during which I take my two children to Lexington-by myself-to Shriner's Hospital, where her doctors tell me the limb length discrepancy has gotten worse. They tell me she needs a shoe lift and I take off her left tennis shoe and leave it for them to work with.

Weird how bringing home one shoe can affect you.

There was the day when I realized I had forgotten to get her AFP test done. The awful guilt that came with that realization came in waves over several days.

Of course, there are the days every six weeks we have the aforementioned AFP test done. And the days every 3 months when she has abdominal ultrasounds before which she cannot eat or drink anything after midnight AND she's held down for it, which completely freaks her out.

And then there are days like tonight. Hubby came home with the name of a highly respected doctor who was recommended by a co-worker: http://www.lengthening.us . While I know that his intentions were excellent, my heart kind of sank.

Geez Louise, why this bums me out is beyond me. I think a big part of it is because I've read up. I know that it's likely that she'll need 2 types of surgeries to make her legs more even in length. The first would be when she's about 8 or 9 and the doctors would go in and basically break the growth plates in her right leg. That's the easy one. If we/they wanted to try for more (usually when you're trying to even up 2 inches or more), there's the type of surgery where the doctors would basically break her legs and attach apparatuses that would keep her bones from completely healing. Rather, we would turn screws/bolts and keep separating them until the desired length was achieved. That is the painful one.

And all I know is, I don't want her to have to go through it. I pray and hope for a miracle. My heart always holds the hidden prayer that she will one day be completely whole in her body and not need all the poking, prodding and surgeries. This mother's prayer has never been forgotten, but sometimes the reality of what is at this moment slaps me across the face. Hard.

Busy IRL (In Real Life)

I remember the early days of chatting when people talked about their "real" lives, and we referred to it as IRL. Do people do that anymore? I haven't chatted in forever.

Anyway, Angie over at Not in Kansas has been posting some good stuff. I was particularly struck by something she wrote in this post (it's a short post, so worth the few minutes it takes to read):

"It’s like this (as an example): If I want to be a person who has clean baseboards, I have to come to a DEEP realization that they’re not going to magically get (or stay) clean! SOMEONE has to clean them, and have a plan for WHEN and HOW they’re going to be cleaned."

In the comments section, I told her that we must be living parallel lives, because I'm in the same boat.

Last week, I began my Spring Cleaning. Not an easy feat with two little "helpers" running around, but slowly but surely, I'm getting there. Last week, I focused on the kitchen. I washed walls and cabinets. I cleaned out old medicine that had expired. I still have a few little projects, one being cleaning out the fridge, that didn't get finished because I was out of commission thanks to a mild migraine.

I also have half of the TV/Play room's walls wiped down, but that room needs some intense, deep cleaning, as it's where we spend the majority of our time. Toys need to be gone through and purged. Everything needs to be dusted and I need another package of Magic Eraser to get some scuffs and crayon markings off the walls.

Last night, I watched "Clean House" on the Style Network to inspire me. Nothing gets me inspired to clean and purge like that show! Wowza!

**********

Apart from the cleaning, other things have been keeping us busy. Abbie had her yearly check-ups in Cincinnati a couple of weeks ago. Everything is great! Praise God! I tell you, I'm just so thankful what He has done in her life. When I think of what might have been and what is, it's just overwhelming.

Also, my oldest "baby" graduated from preschool this week. Having helped in the planning, setting up and tearing down of the reception, I am pretty much worn out. I also have a pretty good idea of how it will be when she's in school and how few parents want to help with stuff. While I realize that everyone is busy and short on money, if we all did a little bit, the burden wouldn't fall on a few. A mom can hope, can't she?

So, here's to cleaning and purging! And a wonderful summer before the official First Day of School! I hope everyone is finding something to enjoy.

As soon as I can, I'll write more... 'till then, enjoy an iced tea or lemonade!

New Stuff for BWS Info

Working at a children's clothing store has really opened my eyes to the clothing and shoe needs of children with medical issues. You might be surprised with the number of people coming into our store looking for clothes to accommodate a myriad of issues, from hemihypertrophy (like my Abbie) and similar needs to clothing that wouldn't get in the way of feeding tubes.

I'm including some more info under my BWS links and have changed the header to reflect those changes. I hope that by adding what I've found, someone out there might be a step closer to finding the shoes or clothing their child might need.

Also, on a personal note, if you are out in public and see a child who has obvious issues (i.e., in a wheelchair or using a walker) or who just "looks" different, please take a few moments to say hello. Then get on that child's eye level and sincerely tell that child how beautiful he/she is.

Planning and Reflecting

Forgive my previous post in which I wax poetic about my love for Sam's Club. Just a few nights ago, I created an online shopping list for "Click 'N' Pull" for Abbie's party. While her birthday is this Sunday, we are waiting until next Saturday to celebrate. Turns out late August is a busy time on our street, with 4 birthdays occuring in about a week or so.

So I'm blessed to be planning Abigail's first birthday party. About nine or ten months ago, I wasn't entirely sure I'd be able to do this. I had faith and I hoped and prayed, but I can't see into the future, so nothing was certain. Nothing is ever certain, and that is one of many lessons I've definitely learned this past year.

As I've written here before, I've also been doing a lot of reflecting. I found a couple of websites that give a pretty good description of Beckwith-Wiedemann Syndrome (click here) and an excellent description of genomic imprinting (basically, the why/how Abbie "got" BWS)... (click here and read specifially the regulation part, which is what is "messed up" with BWS). For the past year, I've been trying to find a way to explain to people what genomic imprinting is and how if in those early, early days of development, if one "little" thing goes wrong, there is a domino effect and I think this definition helps me out with that.

I cannot wait to share photos from Abbie's actual big day and the party next weekend. Planned for the 6th is a cookout with hot dogs, hamburgers, potato salad and cake at one of our local parks.

I'm praying for beautiful weather, fitting for the celebration it will be.

Getting Abbie Home, Part 1

This is the first part in the series of telling our family's story. I pick it up when the real action began. We had found out in April 2007 that there was an issue after my AFP was elevated during a routine quad screen. Follow-up ultrasounds and appointments revealed that Abbie had an omphalocele. This begins after a regular follow-up appointment with my perinatalogist, during which he discovered that the omphalocele sac had filled with fluid and he didn't know why.

What a difference a year makes. (My oringinal title to this post)

I’ve been thinking a lot about what life was like this time last year. It’s crazy what a difference a year makes.

It seems that another mother whose child was in Cincinnati at around the same time Abbie was last year, has been doing a lot of reflecting on the past year, as well. In this post over at Eye on the Baby, she wrote (bold emphasis is mine):

Perspectives...you know how you can only get a certain perspective at a certain time, under certain conditions? Recently I've been going back through old emails in an effort to clean out my mail box. I've come across so many lovely, encouraging, compassionate words from so many people. At the time I got these messages, we were in the middle of a crisis. These words meant so much.

I remember clearly how so many people said, "It will get better." It was impossible to believe. But, here I am over a year later and when I read these words I know without a doubt that they're true.

It's the perspective you can only achieve with the passage of time.

Here's something someone I've never met in person wrote me when I asked her how she got over "it"....IT being the rather traumatic birth experience.

"I guess you get over it a little bit at a time. I remember my mind trying to replay the events of my daughter's birth over and over again too. It was like my mind was a filing cabinet and I had this file that was too frightening and sad to find a place to put it, so it kept lying it on top of the cabinet for me to try and find a place for it later.

"When your first experience as a parent is as frightening and intense as yours, your whole viewpoint of being a parent is just that, but as the days go by you start to have very good moments that start to out shine the bad ones, such as first time you held your baby, fed your baby, carried your baby away from an isolet, and got to take them home. Moms who have a typical birth, all those things happen at once and you can't even separate them, I know that you will cherish each one of those little victories individually."

Did she call it or what?! If there is anything this blog is (of course it's much, much more) it is a testimony to our doing exactly what she said - cherishing each one of those little victories individually.

I couldn’t remember if I wrote anything of what my family and I were experiencing last year. I had to go back and re-read the old posts to check. I had not written anything of substance about what we were going through and the mother's words above perfectly articulate why. It's too frightening to talk or write about. For me, I didn't even want to give the words, "My baby could die" life. I didn't want to say them aloud, putting them out there in the universe, taking shape and possibility. I didn't want the ultimate fear of every parent to be in the realm of possibility for the baby I had so long wanted and tried to conceive.

So it seems that I wrote 4 posts in August 2007. One was some sort of quiz I took that said that determined I was from West Virginia. lol. The title of that post was, “How’d they know?”. Then, I wrote one post about how Abbie’s birthday would be August 27th. Well, that didn’t work out for lots of reasons, so I posted another message which stated that she wouldn’t be born that week, after all. Ha ha ha ha. Ho ho ho. How funny. Because that message was posted August 29th and she made her entrance into the world on August 31st. Both of those messages were basically copied and pasted from emails we had sent family and friends back home. My 4th August 2007 post was a montage of our belly photo session.

There are many reasons I didn’t chronicle what was going on last year. Mostly, it was hard to articulate because there was just so much uncertainty and fear of the unknown. Of course, talking about it now will be the brief version, for so much happened during my days in Cincinnati at the Ronald McDonald House.

If you’re interested, go get yourself a cup of coffee or tea and sit a spell while I stroll down memory lane. I’m doing this just to validate for myself what happened last year and to maybe shed some light on our situation back then for those who may not know our entire story.

The Cincinnati part of our journey began on June 6, 2007. My perinatalogist had referred me to the Fetal Care Center because of some things he saw during an ultrasound during one of my appointments in May. They got me in rather quickly, and Paul and I drove to Cincinnati on the 5th, my grandmother’s birthday. Coincidentally, the 6th was my boss’ birthday and I completely forgot to send her a card.

The FCC staff was incredible. There are not enough adjectives to describe them. I had to be at the hospital at 6 am to start what would be a very long day of tests, consults and meetings. The first thing we had to do was get a fetal MRI. It took nearly twice as long as it should have because someone wouldn’t stay still. She’s been active since she was in the womb and I’ve always known that she’d be a firecracker, a fighter, laidback but not being a doormat. I knew this about her before I ever met her face-to-face.

Over the course of the day, we had a fetal echocardiogram, scores of ultrasounds, meetings with different doctors… it was a very long day. At one point, I got really hungry because I hadn’t eaten anything. I had been NPO after a certain time (midnight, maybe?) for the MRI, and I was so hungry, I was almost sick. The FCC staff directed us to our “nesting room,” a waiting room of sorts for parents undergoing testing, and the receptionist brought us lunch. It was so good. You know when you’re really hungry and you finally eat, how good it is? Multiply that by a hundred when you’re pregnant and you’ll know how good that was to me.

The FCC is located at Cincinnati Children's Hospital. It is a fantastic hospital. Navigating the concourse to get to appointments at different buildings, I began being at peace. If my baby needed medical intervention, I was glad it would be there.

Right before our team meeting, scheduled for about 6 pm, we met with a genetic counselor who talked about the possibility of our baby having Beckwith-Wiedemann Syndrome. It sounded okay enough. But then the neonatalogist came in and said basically, that she absolutely had it. Normally, they wouldn’t say that a baby would have BWS without having a clinical examination, where a doctor can examine the child, see her in person and then make a final diagnosis. We were told that her omphalocele, enlarged organs, and my huge placenta all pointed to them being able to diagnose her before birth. He said that if she was born before 32 weeks gestation, she would die. He said that if she made it and had a live birth, that she would be in the hospital anywhere from 3 to 6 months. He said all of these things in a rather cold manner and I completely fell apart.

The genetic counselor came back in and tried to reassure us. I was blubbering at this point and had to pull it together for our team meeting, which was being held up because I was falling apart in our nesting room. The genetic counselor was so sweet, though. She said that everyone approaches this differently. She has seen kids with BWS grow up and have very full, productive lives. That they know more about BWS now and know how to treat it. She said that the neonatalogist has to tell us the risks and has to prepare us for the worst.

I can’t remember clearly what happened next. What I do remember is going into a conference room and sitting down at a table, at which are seated some of the best minds in the country when it comes to dealing with sick babies. There I met Dr. Crombleholme, Dr. Livingston, and Dr. Lim. All would play important roles in getting Abbie here.

During the team meeting, they showed us the MRI images. You could see Abbie in my belly, already a big girl, measuring weeks ahead of what she was. We could see her large kidneys, liver and the omphalocele. It was at that point that it became real to me. Seeing her inside me like that was definitely an experience.. Those images were both fascinating and heartbreaking, all at once.

The team told me that I would have to relocate to Cincinnati around the first week of August. After I was in Cincinnati, they would monitor me with weekly appointments. My c-section would be scheduled for late-August or early-September, weeks before my original due date of September 21st. We were told to plan on the baby being in the hospital for at least 3 months or as many as 6. I asked some questions, made some notes, but was mostly robotic. I had had to pull it together minutes before this meeting, and the only thing I could focus most of my energy on was getting through the meeting.

Paul and I were pretty much numb following the team meeting. I remember it was dark when we left the FCC and we were really hungry. At that point, we didn’t know how to navigate Cincinnati all that well, so we agreed to eat at the hotel. We were staying at the Kingston Marriott, probably the most expensive hotel I’ve ever stayed at, but the hospital patient discount made it manageable. We didn’t get a break on the cost of the meals, though, I could hardly believe that the buffet was as much as it was. At that point, I didn’t care. I just wanted to eat and go to bed. I remember they had Chicken Ratatouille, which was wonderful. I also remember that for the soaps and shampoo that hotels provide, they used Bath & Body Works products. When we arrived, I lathered my belly with the lotion. After we got the news, I hated the smell of the stuff.

The ride home was very quiet.

I need thicker skin.

Yesterday, I realized that I need thicker skin for this journey and for all things concerning Abbie.

I took the girls swimming with our neighbors at a community pool. After a while, Hannah wanted something to drink, so I went over to the concession stand. A smarter mom would've brought things, but I needed to go to the grocery store, but didn't have time to go before going swimming with our friends (they called to invite us that morning).

So, I'm in line, holding Abbie on my hip when I hear two little girls chatting behind me, and I picked up something about the baby, so I turned around. These girls looked to be about 8 years old and one of them was sticking her tongue out and was mocking the sounds Abbie was making. I didn't know what to think at first. The second girl asked, "Why is her tongue like that?" and I responded, "Her tongue is just bigger," because I didn't want to get into the spiel about her syndrome. Besides, kids usually accept the simplest answer.

Not this time.

The first girl, the child sticking her tongue out at mine, said, "I thought she was just being mean." I'm amazed how my mother bear/lion instinct rises up. I responded, "No, she's not being mean. She has a larger tongue. She was born that way."

I had to fight back the tears. I was SO angry. This child was being really bratty about it. Because my Angel might look a little different, she was being a bratty, mean kid. My heart ripped in two, because it's a glimpse into the future, of when Abbie goes to daycare or school, of when she's bigger and not a cute little baby anymore and has to venture out into this cruel world.

I understand that the girl is just that, a girl. A child. Though, obviously, her parents haven't taught her much in the way of manners, being nice or acceptance of others.

Yesterday, Abbie's feelings weren't hurt. She had no idea that this bratty child was being mean to her. But what will happen in 6 or 7 years (maybe no even that long) when she faces kids like that by herself? How will she handle it? What will she do or say? Will her self-esteem be crushed? Will she cry? Will she be hurt? Will she stand up for herself? What will her words be? Will she let their words roll off her back like water off a duck's back?

How do I teach her to be accepting of herself and what are the right words for me to tell her to say? How do I lead her by my example of how to handle situations like that? Because I want her to be strong and proud of herself.

I want her to excel and succeed in every way and I don't want some snotty kid robbing her of self-esteem and dignity.

Whew! (aka June-July Recap)

I have had numerous posts swimming around in my brain for the past, oh... couple of months. But, as I've hinted, we've been pretty busy and there hasn't been a lot of time for posting long, thoughtful messages, so I've kept them on the shelf. It's time to unload, so here goes. Grab a cup of coffee or tea and let's sit a spell and catch up.

June 2008

Another Milestone

The beginning of June marked the first anniversary of another Abbie/BWS milestone, when we went to the Fetal Care Center in Cincinnati. I was at my parents' house on the actual day (June 6) and it was pretty emotional. I've found that this summer, I get pretty emotional as each anniversary rolls around (odd to call them that, but what other word should I use? Those were pretty important days during my pregnancy with Abbie). My thought is that, last summer, I was trying to get through each day, each week, the best I could so that Abbie wouldn't be stressed and that I'd stay pregnant for as long as possible.

Because what I can say now, but couldn't say then, was that while we were at the FCC, we were told that if Abbie was born before 32 weeks, she would die. Even if we made it to the 32 week mark, she could still die. And so, I felt a tremendous weight on my shoulders for the remainder of the pregnancy. We learned that 50% of all babies prenatally diagnosed with BWS are stillborn. Even if I did everything my incredible team of doctors told me to do, we could still lose her. And those words, so stark and scary.... I couldn't even say the words last summer. I couldn't type them, either. I just could not put those words out into the universe and even give thought to the chance that I could lose the child I had so desperately wanted and had tried for over a year to conceive. I just Could Not Do That. I had to hope. I had to push on, praying more and harder than I ever had that God's hand would be on us both and that she would be born alive and that I wouldn't have a seizure or stroke from the pre-eclampsia.

I was a lot sicker than I let on, and looking back, I was a lot sicker than even I realized.

Funny how hindsight is 20/20, isn't it?

The milestone of June 6 is one that is intensely personal and private, and for the most part, I will keep it that way, sharing it with Abbie when she is old enough to understand the concept of the amazing miracle she is. I will say, though, that I sincerely love the staff at FCC, I love each and every doctor who lent his or her knowledge and expertise to help Abbie get here safe and sound, and I love each and every doctor, nurse and therapist who help nurture and guide her once she was here. My appreciation, gratitude and love for them is so much more than I can articulate and I will always think of them, my heart swollen with thankfulness.

A trip to Florida

Also in June, we took Abbie to Lakeland, Florida. If you haven't heard, there is an on-going revival there. I still haven't decided what to think or say about the experience. Until I do, there's nothing I can share that will make any sense.

July 2008

I cannot understand how this month has gone by so quickly. How is it that I am typing this on July 21? It seems that just a few days ago, we were celebrating Independence Day. This month has been pretty busy, with the middle of the month being occupied by our first Family Vacation. My cousin was married at Myrtle Beach on July 12th at sunset, and since we were using a travel gift certificate to go there for the wedding, we decided to stay a week and enjoy it. After all, it makes no sense to me to drive 8 hours one way to just stay a few days. Both girls enjoyed the sand and the ocean so much that my mom is deeming them both Beach Bums.

I wasn't sure how either girl would take to the sand, but I can report that both loved playing in/with it, running or crawling on it, and they pretty much spent the entire time covered with it. Hannah, taking after her dad, had to rinse off the sand immediately once she was finished with any particular sand castle or digging. Abbie didn't mind it at all, to the point that she boldly crawled around without being fussy and didn't even complain too much when her diapers were filled with it.

The ocean was Hannah's favorite part and each day, she grew bolder and bolder, venturing out a little further. The first day, she was brave enough for wet toes and feet, and by the time we left, she was ok with being in up to her knees. Abbie enjoyed the ocean as well, splashing about in the water and holding her breath when a wave splashed her face. She is fearless and this trip has shown me that there is no end to her bravery and that the next few years will keep me very busy.

Our last evening at the beach, we had a professional photography shoot, our first family photo. I can't believe that our oldest child is 4 1/2 and we've never had one done, but I thought that it was high time we had a family photo made and the info on the website was more than I could take, so I scheduled a session. The wind was fierce, as a tropical storm was brewing off the North Carolina coast, so she had to take 80 shots. There are so many good ones that we're planning on buying the CD. You'll understand why when you see the photos. But that might be a while, because the CD is going to cost around $150-$170 and we need to recuperate financially from the vacation before doing anything extra. Such is life when you live paycheck to paycheck.

Though it probably wasn't the wisest choice to go to the beach until we had saved more money,I wonder how long it would've taken us to finally make the decision and action to go. Does that make sense? I'm not sure how a lot of people live, but it seems for us, we hope for "one of these days," "one day" or "some day." My oldest baby will be going to Kindergarten in a year, and I don't want her childhood to slip by without making these kinds of memories, no matter what we have to sacrifice.

Looking Ahead

Speaking of finances, I am trying to figure out what to do. I have wanted to do a program that would allow me to work from home, making as much as $14 an hour. It requires a $200 investment, which we don't have. Even with our former home finally sold, we still don't have extra and coast along on fumes a lot during the week before payday. The perfect situation would allow me to stay at home with the girls indefinitely; however, I have this awful feeling in the pit of my stomach that says that I'm going to have to go back to work, at least part-time, just so we can keep our heads above water.

As I've mentioned before, I am thinking of getting my teaching certificate and perhaps even my Master's, in education. But that takes money, a commodity in short supply since we moved to the house in which we now live, tried to and finally sold the former home and were sued. (Long, long story that I cannot legally get into on a public blog).

At Hannah's dance class, I met a woman who works at a local children's clothing store. It sounds like a great answer for our present needs and may be the answer to prayers in providing extra income to allow me to either get the teaching certificate or do the work-from-home business.

While browsing the classifieds this morning, I came across an ad for a copy writer, which would be a dream job for me. It would be full-time and would require putting both girls in daycare. I would love to have this kind of opportunity, and yet wonder what kind of impact it would have on my children. Mother's guilt never ends, does it?

I do plan on getting back to finishing the garage. Right now, there are bathroom and plumbing tools and parts scattered everywhere, in addition to all the things that already needed to be purged or organized. I told Paul this morning that I strongly feel that the garage project and hopefully, the house, should be cleaned out and organized before Abbie's FIRST BIRTHDAY PARTY in roughly 6 weeks (can you believe it?!??!?). That, too, will require money for a babysitter and for the organizer to come back and lend her help and get-up-and-go. How I hope I can find the momentum I previously had! And how I hope Paul finishes the bathroom (no, it was never finished.... only the bath tub was installed. My house is still in complete and utter chaos).

Looking ahead, I have a LOT to do, to plan for and I hope to accomplish most of my goals. But mostly, I just want to enjoy my girls, the summer and plan for the future ahead of us.

A Year and A Day Ago...

I'm weird. I remember things. Lots of things. When it comes to remembering events and dates, I'm your girl.

In January, I posted that it was the 1-year anniversary of getting my first and only positive pregnancy test in 14 cycles. While that may be no big deal to some, for anyone who has had to "try" very long, that's a huge deal.

One year and one day ago, on April 17, 2007, I got the call.

The call that started with, "Your blood work didn't come back right."

Back then, I flowered over things and probably sugar-coated things for both the sake of others and myself. While I did go over the major things the doctors were telling us, I left so much out. So. Much. I think that now we are on this side of it, maybe I can open up a little more about what we were really going through.

It was a Tuesday morning. The phone rang at my office. I answered and the person on the other end of the line asked for me. "This is she," I responded. I knew the voice. It was Kim, my doctor's nurse, and I had been expecting her call. I had been expecting her to call and say, "We got your blood work back and everything is ok." Instead, I heard:

"Hi, Aimee. This is Kim. Dr. S. wants to talk with you about your blood work."

Immediately, all together and all at once, I felt my cheeks flush, my stomach begin to churn, nausea begin and a lump swelled in my throat. Tears began filling my eyes while I waited for my call to be transferred and my doctor pick up. I knew it was bad. He never spoke with patients about test results unless the results were bad.

While I was waiting, a co-worker came out to my desk, saw me trying to keep it together and asked, "What's wrong?" I think I freaked her out because she got the other admins and I think I whispered "Just a minute" or something along those lines... it's all pretty fuzzy because my mind was racing a million miles a second.

"Aimee? This is Dr. S. Your blood work came back and your AFP levels were elevated."

"Ok." For the remainder of our conversation, I tried to limit my responses to "Uh-hu" or "Ok" because I was afraid that if I had to speak actual words, I would break down and be a puddle of emotions. The tests were what is normally done during pregnancy, called a "Triple Screen" that tests for things such as Downs Syndrome, neural tube defects (such as Spina Bifida, Gastroschisis, etc.) and so on.

"Elevated AFP levels can indicate a neural tube defect. I want you to come in tomorrow for an ultrasound so we can see what's going on."

"Ok."

"This doesn't necessarily mean that something is wrong, but it's enough to cause concern, so we want to do the ultrasound to take a look at the baby. Can you be here tomorrow?"

"Uh-hu."

"All right. I'm going to give you back to Kim and she'll schedule you to come in."

"Ok. Thanks, Dr. S."

Once the ultrasound was scheduled, I put the phone on the hook and finally blinked, releasing tears that had been held back for as long as I could hold them, because I knew if I let one go, they would all come, en force, unstoppable.

By this time, I think almost everyone in the office is standing there, staring at me, waiting for explanation. I tried to tell them, while at the same time, absorb, what was going on, its enormity and what it all meant. I immediately called my husband and the sound he made was that of someone who has had the wind knocked completely out of them.

We were stunned. Breathless. Overwhelmed.

I immediately thought of my friend, Ashley, from high school. Ashley had spina bifida. She was one heck of a fighter who had endured several back surgeries. By knowing her, I knew what it meant if my baby had spina bifida. She was all I could think about for the next 24 hours.

On Wednesday, April 18th, I went to my doctor's office for the ultrasound (u/s). I couldn't believe how much had changed in the four years since I was pregnant with my oldest. The practice had purchased a new ultrasound machine and there was now a flat screen monitor that allowed better viewing by the parents-to-be.

The u/s tech was quiet and all business. She kept checking around, but it didn't take as long as I thought. She left the room.

"This isn't a good sign," I told Paul.

"What do you mean?" he asked.

"I think she went to go get the doctor. If she did, that's a bad sign."

"Ah, I bet she just had to go to the bathroom or something."

The tech came back with Dr. D., my doctor's partner in the practice and the person who delivered my first baby. My heart sank and tears welled in my eyes.

Dr. D. took the ultrasound probe and began looking around. Then she started explaining things. My heart sank when I saw what they had been looking at. You could clearly see something going on in there. I've never been good at reading u/s images, but it was clear that something was going on that shouldn't be.

She explained that she thought it was a gastroschisis. It could be an omphalocele, that they would look at the images and call me with their final diagnosis. But, she said, trying to assure us that everything was ok, this is manageable. A gastroschisis is pretty much the easiest thing to deal with, she said. If you're going to have a defect or problem, that's the one to have, she said. Omphaloceles tend to be associated with chromosomal abnormalities, but she really didn't think it was that... she was pretty sure it was a gastroschisis.

I drew a deep, long breath.

"Ok," I said, "This is manageable."

"Yes! It is. This is very manageable." She chirped.

While I know she was trying to be optimistic and helpful, it still hurt. "Manageable" wasn't what I had prayed and asked God for. "Healthy" is what I asked of Him. At this point, I began crying but she was really wonderful about it. A lot of "It's ok"'s and a few offerings of tissues.

We asked if they could yet tell if our baby was a boy or girl.

"We'd like some good news," Hubby said. I'll never forget how sad his voice was. It really didn't matter if our baby was a boy or girl, we just wanted to know, to celebrate. The tech said, "It looks like a girl." We asked if there was any way she was wrong and she looked around some more. This was definitely a girl.

We left the doctor's office, still overwhelmed and wondering what all this meant for our baby, our family, us.

We agreed to not tell anyone about the baby being a girl just yet.

On Thursday, Dr. S. called me again. He said that he didn't feel comfortable making a diagnosis of omphalocele or gastroschisis based on the images they had taken. He wanted to refer me to a Maternal-Fetal specialist who was wonderful, very good, very knowledgeable.

About a week later, we saw Dr. C. He looked and within a few minutes said definitely and unquestionably, it was an omphalocele. And that we were going to do an amniocentesis.

"When?" I asked.

"Right now," he responded.

"I didn't plan on having an amniocentesis today. Are you sure we have to do it today? What about the risks of miscarriage?"

"You're not getting it. You have to have this done. Today."

I completely freaked out inside. Long had I heard how having an amniocentesis was very risky, how high your chances of having a miscarriage are following an amnio... lots of things like that.

I had watched "Babies: Special Delivery" (a show about high risk pregnancies and births) and countless other shows that showed an amnio being performed before. I knew what to expect and was scared, to put it very lightly.

I laid flat on my back. The doctor and u/s tech started scrubbing my growing belly with a clear cleanser and then iodine. All the time, I'm taking huge, deep breaths. I always do that when I'm really nervous or upset. Usually, it works because it helps slow down my pulse and, well, it's just my coping method. All people are different.

Before he started, he told me that I would have to take shallow breaths. What did I do? Hold my breath. Stupid. I was too afraid that any breath I drew wouldn't be shallow and that would be trouble.

"Wanna watch?" he asked as he began.

"No, I'm a chicken. I'd watch it on other people, but not on myself."

So it began. It hurt, but just a bit. I think it probably wouldn't have hurt as much as it did had I relaxed. I cramped. That was scary, but he said it's to be expected. I laid there for a minute, but then the doctor wanted me to sit up. He thought I was going to pass out.

Dr.: "Are you ok?"

"It hurts a little."

"You know, you’re supposed to milk it a little. That’s worth at least dinner at Logan’s tonight."

At this point, Hubby chimed in, "Waita sec. She had Olive Garden at lunch today." [The office does lunch out for employee birthdays and we celebrated one that day.]

Dr.: "You weren’t the one taking that needle, buddy." [The moment I was convinced this was the perfect perinatologist for me.]

I went home and my husband was wonderful about making me rest (not that he had to make me! All I wanted to do was curl up on the couch or in bed. I felt awful.)

One of my dearest friends, a friend since we were in junior high together and who is now a doctor, called that evening to see how it went. Can I just say that Dr. K. H. is pretty much the most amazing woman and best friend ever? She reassured me that, today, the risk of miscarriage after an amnio is hardly anything and that the data out there regarding that risk is very old, outdated and is based on methods used 20 years ago. Today, amnios are much safer, she said. Whew! A huge weight was lifted off my shoulders. Then, she made me promise and swear to her that I would not get online and research anything relating to this or to amnios. I thought she was pretty much going overboard, but she's one of my best friends, so, sure, no research. I didn't feel like it, anyway.

My Aunt M. called and she gave me a lot of the same info regarding today's amnios vs. the Amnio of Years Gone By. I also want to say that through this, Aunt M. has been INCREDIBLE. She's just wonderful and I have trusted her and relied on her the same way I have our teams of doctors (both mine and Abbie's).

The day after the amnio, my regular doctor, Dr. S. called to ask me how I was feeling and if I had any questions. With each call, with each display of compassion, I just grew to love him as part of our family. Though I know it wasn't quite that kind of bond, I so appreciated that he personally called to check on me. I have tremendous respect for him and a feeling of appreciation that runs deeper than typical of a patient for a doctor. It wouldn't be the last time he would check in on me like that.

The initial results were due on the following Monday. The initial report covered whether or not the baby had a trisomy 13, trisomy 18 or Down’s Syndrome. I hadn’t heard anything by Monday afternoon, so I called the office and was told that everything came back ok. And that our baby is a girl (they check the X and Y chromosomes, too). The ultrasound was confirmed, and we felt that at this point, we could tell people that the baby was a girl.

After getting the initial results back, I finally Googled the terms trisomy 13 and trisomy 18. I felt guilty, horribly guilty, for being relieved that our baby didn't have either of these. A trisomy is when a baby has three, instead of two, of a chromosome. Babies who have trisomy 13 or trisomy 18 never live. Now I knew why K. had made me promise her to not do research. How thankful I was that I didn't have to live 3 days in a mental hell, wondering if my baby would live or die. It was incredibly difficult to read their stories, see how they endured what they had. I may share a story or two at some point.

About a week later, we got the complete report and everything else came back ok, meaning, no chromosomal abnormalities, no other organs are affected besides the intestines and there are other problems. Well, that's what we thought, anyway. I wouldn't learn until a couple of months later that Beckwith-Wiedemann Syndrome, a chromosomal disorder, is not detected by an amnio. For a brief while, I believed that the "only" thing going on with my baby was her intestines being outside her body.

In June, I would learn so much more.

Watch the "Today" Show on Tuesday, April 8th!!!

The guy I talked about in a recent post, Jay, and his wife will be on the "Today" show on Tuesday, April 8th.

Obviously, they'll talk about "The Biggest Loser," but I'm hoping that since his wife will also be with him, that Beckwith-Wiedemann Syndrome will also be discussed.

How exciting! I already have my DVR set to record it.