It looks like Clara will have an early February birthday rather than early March.  My OB will be scheduling her delivery for a little over a week away; that is, (in the words of the perinatologist) if we make it through next week.  She was a little concerned that Clara's cord doppler reading was high again. However, and thankfully, fluid around her heart remains low.  Due to that fact I escaped being once more locked away in the hospital!

The second best news was I am now released from bed rest.  She said I was so close that at this point it didn't matter.  Yay! 

I see my OB in the morrning to set a date.  Then Monday afternoon we will see the perinatologist again to check back in with Clara. We are at the home stretch now and I can't wait to kiss and hold my little girl.

Oh, and I'm digging the paints back out this afternoon, after I have lunch with a dear friend from my e x-workplace.

Clara and I have our second appointment of the week tomorrow.  Monday was good.  The perinatologist acts amazed at the turnaround Clara has made.  She said her cord doppler reading was completely normal and there was very little fluid around her heart. 

Tomorrow I'm going to ask her if we can ease up on this bed rest assignment if Clara continues to look strong.  I keep staring into my art room; itching to paint--something.  Grapes.  I want to paint more grapes.  But this time it will be green grapes.  Green grapes and ? 

Also, I think I've been reading too much.  I'm getting lost in online conversations, forums, blogs, articles, and books, all about Down syndrome.  I need to take a break from this obsession.  Well, it's not an obsession.  It's my life, isn't it?  But still, my mind needs to be somewhere else for a while, and painting is where it's at. 

Send me positive energy that all will be well at our appointment and maybe mommy can get up and move around a bit more. 

For Christmas I purchased a Kindle Fire HD for Cxdy.  He had an older Kindle keyboard, so once he received the new Kindle, which he absolutely loves, he no longer had use for his old one.  He offered it to me, and though it's grey and white shell looked rather boring in comparison to his new shiny gadget, because I'd never had a Kindle or any e-reader I told him I would give it a try. 

Well, last week I finally bought my first e-book for this not-so-fancy Kindle.  I purchased "A Good and Perfect Gift" by Amy Julia Becker (and I missed getting it free by one day!).  Someone had suggested it for mothers new to raising children diagnosed with Down syndrome on a message board at the babycenter.com website. 

But, before I discuss the book, I want to say that I love that plain little Kindle.  The color HD Kindle is so bulky and heavy, and the screen is shiny.  I think the little plain e-reader suits my needs so much better, as it's lighter, easier to hold, and the matte screen is easy to read.  And of course, it's so much easier to hold than an open face book.  It was a good experience.  I have a laptop, so I have no need for my e-reader to act as anything other than a book.  I do wish the screen had a backlight, though.  That is the only thing that I would want to change about it.  I look forward to reading more books from it. 

"A Good and Perfect Gift" wasn't everything that I wanted it to be when I purchased it, only because I was hoping for more detailed information on how things like state-sponsored therapy works, but had this book delved into those details it would have taken away from the author's intent, so I understand that.  I'll just have to find that information somewhere else or learn as I experience it. 

Becker is a well-educated spiritual woman.  Though there are theological references throughout the book, as an agnostic person I did not feel that this detracted from the quality of her writing or distracted from my relating to her process of coming to terms. 

What I did enjoy about the book was that the author was very honest about her emotions and how she dealt with them as she learns to accept her daughter's diagnosis.  Unlike me, she didn't find out her daughter had Down syndrome until after birth.  I know from experience that Ds is a tough diagnosis to swallow so I'm just thankful that it won't detract from the joy I feel when Clara (finally!) gets here.  Like the author, I've always valued intelligence and the intelligence of my children.  Now, like Becker, I'll just have to focus on a different area with Clara in which to build pride.  I'm sure Clara will be good at something.  Maybe painting?  Or just being loving?  But, again, I have the priviledge of working through these emotions before Clara gets here.

Becker asks some tough questions in her book.  She wants to have another child, and does, but through that process well-meaning friends, doctors and acquaintenances suggest precautions against having another child like Penny.  In response, Becker asks herself what I would ask, which is: Meaning, I wouldn't want another child like this child?  Because everyone loves this child, we know this child is special and a gift, and we tell ourselves that aside from being different, there is really nothing wrong with this child, so what would be the harm in having another child like this child? 

 I have found so many blogs now where parents are advocating for their children with Down syndrome.  They want the world to know that there is something very special about that extra chromosome--and that if they, the parents, had the chance to change the chromosomal makeup of their children they absolutely would not.  So, why then, do we worry about the odds of having another child with Down syndrome should we decide to have more children?  And why does the medical community seem so eager to persuade us to terminate these pregnancies when the parents of these children claim to be so content, happy and spiritual?  Actually, the question isn't a question I ask myself because before Clara was even conceived I knew she was my last.  But still... if I wanted another child... 

One area where I do feel differently than the Beckers: they seem to worry a lot about what other people think. They worried other people would think they were irresponsible for trying to have another child because of the risk of having another Down syndrome diagnosis. Amy Julia worried about what people thought about Penny. Right now I've not had any concern about what people might think about Clara, but then Clara isn't here yet so I don't know if that will change. My hope is that it won't. But, I do worry about how I'm going to react when people act offensively toward us, and I know this is going to happen. I once chunked a can of coke at and went ballistic on a young man who referred to my oldest as a bastard. That was 20 years ago. Perhaps I've mellowed.

In the end, if Becker could take the extra chromosome away, would she?  In the end I believe her answer ends up being "no." 

I will point out, her daughter is on the high-functioning end of the Ds spectrum.  From what I gather her daughter is actually very intelligent, but because of her extra chromosome, she has to learn things differently and at her own pace.  For instance, she can communicate, but rather than speaking at the same age as other children, she learns to sign.  Talking comes later.  And she doesn't walk at the same age as other children, but it's suggested that this is because she's satisfied with sitting and doesn't feel the need to challenge herself to something more daring.  In fact, there is an incident in which Becker tries to challenge her by laying a toy out of reach and then walking away to see if Penny will try to crawl for it.  When she comes back into the room she finds her daughter has solved the problem by pulling the blanket the toy is on into her reach instead of attempting to reach it by crawling.  Penny is a problem-solver, which one doctor told her she would never be. 

I'm glad I read this book, as I feel it has me asking myself questions that maybe I was afraid to ask before, and it is important to me that I work through the majority of my emotions about Down syndrome before Clara gets here.  It was really thought provoking and I definitely look forward to reading more about Amy Julia Becker's journey in the future, as her child is still young--I believe 7. 

The biggest question for me is if I will one day appreciate that extra chromosome and feel comfortable telling the world that I wouldn't remove it if given the option.  I don't yet know where Clara will fall as far as the extent of her disability, so I don't feel I could answer just yet.  Actually, to be honest, right now I would say, "Yes, please take away the extra chromosome." My experience is yet to come, and my gut tells me Clara is a blessing to me, but will I ever be thankful that she has Down syndrome?  At this point I just can't imagine it.  But, I know I can love her.  I already do.  With all my heart. 

I wanted one more child so Lxkas wouldn't grow up being an only child.  His siblings are 15+ years older than him.  My vision was two little mischievous boys growing up best friends.  Daddy wanted a little girl.  It seems like Daddy always gets what he wants.  When we first dated we had a problem when he expressed he wanted children some day and I told him that didn't fit with my future.  I was done raising kids, as mine were both practically grown.  Two months later I was pregnant with the bear. 

The day I took the pregnancy test for this pregnancy I knew.  It didn't come as a surprise at all because this time it made sense and it was meant to be.  I had no qualms about having another child at 40.  Sure, you hear there are risks, but those things happen to other people.  There is safety in numbers, and the numbers said my chances of having a child with a chromosomal disorder were 1/100.  I didn't even know that number at the time, because it just wasn't a concern.  I know it very well now. 

When the doctor offered the triple screen test I didn't see the harm.  After all, when I'd had one with the bear the results came back outstanding--like, there wasn't a chance in hell anything was wrong with my baby.  I would get the same results.  No worries. 

While waiting for those results I had an ultrasound performed.  Everything looked fine as far as I was concerned; I got pictures of the baby and found out she was indeed a girl.  Daddy was happy.  Mommy was happy, too.  Big sister would have a baby doll to glamorize.  It was all good.

Then the doctor himself called me that same afternoon.  He said they had seen a bright spot in the baby's heart on the ultrasound, and this was a fairly common occurence; could be nothing so don't worry.  I wrote down words coming out of his mouth as I was on the phone with him because you know where I was going when we got off the phone:  Doctor Google.  Echogenic intracardiac focus.  The first clue.  But after reading and reading and finding that the finding itself usually resulted in no issues I dismissed it.  The doctor said a perinatologist would be calling me to schedule a level II ultrasound just to have a closer look.

And then I got the call back about the results of the triple screen.  The nurse said my chances of having a child with Down syndrome were elevated at 1/32.  That caused me a little bit of alarm, but the daddy and I were sure everything was okay.  It had to be. 

The perinatologist took his time calling to schedule an appointment with me.  It seems like it was nearly 2 weeks before I got the call.  But I remember it was a Friday in early November when I went to see him. 

His practice doesn't hurry for anything, I found out.  I waited an hour and a half for my appointment.  I saw the sonographer first.  She was friendly enough, but she had a grim demeanor.  Perhaps it was because she was seeing things that she couldn't tell me.  She didn't tell me much, but at one point she did ask:  "You do understand why you're here?"  I think that was her way of preparing me for the news I was about to receive.  But, it also left me with a less than friendly feeling towards her.

After the ultrasound she escorted me to the consultation room, where shortly after being seated I finally got to meet the perinatologist, Dr. Jones.  I now know that he is only 1 of 2 perinatologists in this area and he is a fairly recent addition to our community.  I don't remember the first words out of his mouth, but it didn't take long for him to cut to the chase:  "I want to convince you to have an amniocentesis, and these ultrasound pictures will show you why."  I had read about the amnio.  I knew there were risks.  I was already against it when I had walked in that morning. 

He showed me the pictures, and he told me what each one was showing.  Each finding was a "marker" for Down syndrome.  The first marker was, of course, the bright spot on the heart.  Then he had found fluid on her brain.  Also, she had a thickened nuchal fold, which is the skin behind the neck, and also considered one of the biggest markers for Ds. And finally, he didn't see a developed nasal bone, another strong marker.  Oh, and she appeared to have at least one club foot which had no association with Down syndrome, as it was more likely hereditary (which I found out later from my mom that she was born with a club foot).  As he introduced each issue I couldn't help but notice he referred to her as "this baby."  I knew what he was doing.  He was disassociating her from me. 

He closed by informing me that her limbs could be measuring slightly shortened, but they were still within normal range.  I don't know why, but I started feeling defensive, so I snidely commented that I was thankful that something was normal with her.  I could see his anger and frustration building with me as he then stated that there "was a lot that was normal with this baby."  He set her odds of having Down syndrome at 40%.  I thought those were pretty generous odds given all that he'd just thrown at me.  I then made the dumb comment that I was more concerned about her having club feet than I was the Down syndrome, and he snapped at me; his voice rose as he told me this was very serious and I needed to have the amnio because there was still time to terminate, or if I didn't want to terminate I could be better prepared.  By then I felt emotionally shook up; everything was coming down on me; something terrible was happening with my baby.  This doctor was telling me she was fucked up.  I agreed to the amnio, mostly so I could please him and be let loose.  They scheduled the amnio for Monday morning.

I was a wreck as I drove home.  I texted Cxdy all of the information I had just been given and asked him (knowing the answer) what he would want to do if Clara had Down syndrome.  He said he loved her no matter what.  I cried.  I knew then that we were going to raise a little girl with Down syndrome.  My world had just changed.

When he got home from work that afternoon I discussed the risks of the amnio with him.  Though it was 1% or less, there was a risk that the amnio would cause me to lose Clara.  We agreed we didn't want to risk losing her so I called and cancelled the Monday appointment and over that weekend my anger toward Dr. Jones grew. 

The following week, I called my OB's office and asked to be referred for a second opinion.  They got me in to see Dr. Blake, the only other perinatologist in the area.  My purpose for asking for a second opinion was not because I didn't believe what I had been told, it was because by now I had read enough to know I was going to need a perinatologist throughout the remainder of this pregnancy and I sure as hell wasn't going to allow it to be Dr. Jones, the man who didn't think children with disabilities are entitled to a life in this world.  Okay, I've built that last statement up on my own, but I didn't get warm fuzzies from him.  His cold fingers were not touching anything to do with Clara again.

Dr. Blake was able to confirm everything Dr. Jones had found, with the exception of the fluid on the brain and the club feet.  To this point there has never been another issue identified with the ventricles of Clara's brain and three other sonographers have not been able to verify a club foot, though they don't deny it's also possible.  We will just have to wait and see.

The visit with Dr. Blake was so different.  She offered me a new-on-the-market alternative to the amnio.  There is now a simple blood test that finds the baby's chromosomes in the mother's blood called MaterniT21 and there is absolutely no risk to the baby.  I had my blood drawn following that first appointment and waited a week for the results, about the same wait time as the amnio.  Also, following the appointment she laid out a plan to me:  If it turns out Clara does have Down syndrome, she would see me through the remainder of the pregnancy, every two weeks, at least, to monitor Clara's vitals.  If Clara didn't have Down syndrome, she still wanted to stay with me to find out what was causing the swelling behind the neck.  I left feeling relief.  I had found someone who was on our side; someone who would care about Clara. 

It took exactly a week to get the blood test results back.  Dr. Blake called me herself.  It was an uneventful call because like I had known I was pregnant before taking the pregnancy test, I knew Clara had Down syndrome before she confirmed it to me.  I thanked her for the call, and she did say that since there was a 1% chance of error I could still have an amnio if I wanted.  I told her that was okay; I was willing to accept this diagnosis. 

And Dr. Blake has been seeing us through this.  Clara is monitored closely--twice a week now.  I've been restricted to bed rest to keep the cord blood flow at a maximum.  After being hospitalized on bed rest last weekend Clara saw a great improvement.  So much that we didn't have to induce labor as Dr. Blake was sure was going to happen.  I know Clara is going to come early, as Dr. Blake has told me she's not going to let me go past 37 weeks, but I'm prepared that this could happen sooner. 

When it does happen, Clara is in good hands and she has a lot of people waiting to give her lots of love.

I'm glad we found out when we did.  It's given us time to learn about Down syndrome, and it's given us time to adjust our expectations.  I can't imagine finding out after her birth.  I can't imagine how I would have reacted.  Would I have been disappointed?  Now, if she didn't have Ds at birth, I almost feel like that would be a disappointment, as strange as that may sound. 

Clara is going to teach me to be on my toes--I know this without a doubt. The plan was that she would be receiving another 10 at her last check-in with the perinatologist because things have been going so well.  That didn't happen, but she did get an 8.  However, a couple of things showed up that they don't score for in the biophysical profile.  Clara's blood pressure was high, she is starting to develop fluid around her little heart and (excuse my lack of medical terminology here) the umbilical cord is losing functionality, meaning oxygen isn't getting to her at 100%.  The cord and the fluid around the heart are most likely related. 

As I was waiting on the perinatologist to come in for her end of appointment visit with me I was quite unsuspecting.  I knew the technician looked a little concerned when she was measuring the cord, as she asked me to hold my breath and they've never done that before.  But still, I didn't expect the first words out of the doctors mouth to me to be about going to check in at the hospital.  And at first I thought she meant just for more tests, and then the words started coming about packing, staying the weekend, delivery Monday.  Woah!  Wait a minute!  What?!  You mean I'm going to possibly have  my baby after the weekend?  Her response was affirmative.  She explained that I would be on bed rest at the hospital where they would monitor Clara regularly to make sure she wasn't getting worse before Monday.  She would receive steroid treatment so that when she did come her lungs would be more developed. 

And now it's Saturday: day 3 of my long hospital stay.  I've never been in a hospital this long, and it could be a lot longer.  I miss being home.  I miss the painting habit that I'd started.  I miss my chaos maker and his older siblings.  Though, Lxkas is here at the hospital with me the majority of the time, I can't be up and taking care of him like I do at home because my orders are to stay in bed, which keeps the blood/oxygen flow to Clara stronger. 

And I feel bad for him.  This interrupts his schedule and the lifestyle to which he's accustomed.  He's worried about me.  I can see it in his eyes, and when I see it I fight tears in my own.  Any time a nurse or tech comes in he calls my name and runs to my side because he doesn't want them putting things on me.  His daddy holds him so he can watch without interferring.  How does a 20-month-old know something isn't right?

But for Clara's sake, I'm glad we're here.  I'm thankful for the perinatologist, that something bad won't happen to our baby before she is born because nobody noticed.  I'm thankful for my love, that he has been here by my side though it all, and took over Mommy's duties without the slightest complaint.  I can see he wants to be my side, and I didn't expect that to this extent.  And I'm thankful for both of our families who have been so supportive, offering to do what they can. 

I'll have an ultrasound Monday.  If her heart looks like the fluid is continuing to build and the cord is continuing to deteriorate, they will take her.  Otherwise, she will stay in as long as she can, and I'll most likely be here at the hospital until she is born. 

In the grand scheme of things, this stay is simply a small inconvenience.  Priority is getting Clara here safely.

Here is a painting I had just completed before being shipped away to the hospital.  Total time on it is about 3.5 hours, which is about where I want to be in my practice.

I've committed myself to painting at least a couple of hours each day and it seems to be working.  I'm not painting as quickly as I had envisioned, nor am I painting as much.  It seems that my little chaos maker has other plans for me.  Oh, how we battle through the day.  But, as much as he makes me crazy I absolutely adore him and his 19-month-old chaos quickly brings smiles to my face.  I can't blame him for wanting in on the action.  And he is curious about my art supplies.  The struggle is when he spills a bottle of cobalt drier all over the floor, and himself.  But, we are adjusting and I'm keeping my fingers crossed that something here is going to work.

These past two weeks at home have been absolutely blissful.  I can feel my mind is refreshing and starting to get back into that creative gear.

It was some time ago that I realized that if I'm in a position that I have to think analytically for a majority of the time then my creative juices suffer.  It won't happen.  It's like a lawnmower that won't start even though you keep tugging and begging. If I clear myself of analytical thoughts, like I have these past 2 weeks being willfully unemployed, then I see it come back and improve.  And that's where I'm at.  It's building up inside me, like a power plant being re-energized; like Superman shedding the kryptonite.  Ha!

My weekly check-in with the perinatologist is tomorrow.  Last week Clara scored a 10.  She will do it again tomorrow. 

Earlier I thought of a conversation I might one day have with Lxkas when trying to explain his sister's condition to him, because I know a day will come when he will wonder why his sister is more challenged in certain areas.  This is something that I feel I have to approach the correct way, and perhaps the way I want to approach it isn't the way others would, but I think I also view trisonomy 21 a bit differently than others do. 

I don't accept it as who she is.  I accept it as an accident that happened to her.  I don't feel that this was the way her life was meant to be.  She was supposed to have the same set and number of chromosomes as her father and me.  And unlike a parent whose child has an accident later in life, I will never know who she really was, as her accident happened too early to have ever had that chance. 

So, I would tell him just that; that the accident wasn't anyone's fault, but sometimes they just happen.  She should have come to us on a different course, but because of the accident, she needs us more than she otherwise would have.  She will always need us, and we will always be there for her, to watch over her, love her and make sure she has everything she needs, because that's who family is.

And that's how I've always thougth of Clara, since first learning that she will be born with Down syndrome.  This extra chromosome attached to her and set her on a different course.  It changed how she looks and how her mind works.  My baby had an accident, and I'm here for her.

Pregnancy is at times a lonely state.  Actually, a lot of the time.  I don't know that anything can really be done to change that.  It's possible I bring it upon myself a majority of the time I start feeling this way.  After all, I am hormonal and as a result also hyper-sensitive.

But then I think not.  Nobody, not even your OB can understand everything your body is going through--the pains, the aches, the worries.  And when you are going through said things it's disappointing when it feels that not even the people closest to you care to understand.  But, it's only stomach acid.  It's a common ailment and yes, it's uncomfortable, but I will surivive it. 

And I struggle to keep my mind from twisting and bending things too distantly from what they actually are.

I'll be the first to admit I can't stand to hear other people moan and groan about their physical ailments (and we all know someone who carries on because medical science will never truly understand or diagnose their real problem and we should be amazed at what they are surviving day to day).  That part I get.  A pregnant woman could whine every day.  Nobody wants to hear that.

But if I am feeling a bit worse than usual I'm going to get mopey and my God, the world in my mind is ending.  And that's where I've been the last couple of days.  It's not a good place.  But, I'm trying to come back.  And I'm trying not to hold a grudge against anyone because I had to live this horrible experience alone;  I went in alone, and I'm coming out alone.  This is just one of the times when it would be nice for someone to offer to care for me. 

Well, Clara is with me, as she has reminded me through all of it with her hiccups and kicks. 

Tomorrow I will conquer the world.

Yesterday afternoon was the first of several biophysical profiles in which Clara and I will participate.  It's a series of "tests" that she must pass once a week until her birth.  She receives a grade of 0 - 10, with anything 8 and above as passing.  A complete description of this test can be found at American Pregnancy Association's website. 

Clara's heartbeat on the left.

The first part was the nonstress test.  Two sensors were banded to my belly so the medical staff could monitor Clara's heartbeat in relation to her movements and other disturbances such as uterine activity and a horn they once blared at my belly for her amusement.  All the horn seemed to do was speed up her heart rate for a few seconds.  The nurse performing the test said that Clara was being uncooperative, as she seemed to prefer rest over amusing the tester.  I'm not concerned, though.  Clara has been plenty active, and when she is active, sometimes it seems she is overactive.  They just happened to catch her at her nap time.  Who can blame her?  She'd been up late the night before teasing her mommy.  For this part of the test, they didn't say, but I suspect we received 0 out of 2.



The two sensors strapped to my belly for the nonstress portion.



The ultrasound technician performed the remainder of the test--worth 8 points.  This ultrasound passed quicker than past ultrasounds, mainly because the tech wasn't performing measurements, but instead looking for specifics from Clara.  One of these was to see Clara practice breathing.  We waited a good 15 minutes before we saw her lungs panting up and down, but what a relief it was to me when she did.  Had she not done this then there would be concern about oxygen getting to her brain.  For the ultrasound part of the biophysical profile she scored all 8 points. 

My understanding is that if she scores below 8 points then the perinatologist will look at whether the best option is to induce labor versus continuing the pregnancy.  I feel fortunate that aside from her Down syndrome diagnosis Clara seems to be thriving and healthy.  I'm hanging on to that.  Please stay strong, little girl.  We are almost there. 

A few times over the past month I've found myself lying awake in the middle of the night.  I'm not sure what wakes me.  Perhaps it is a dream. But my thoughts are consumed with Clara--her health, her birth, how she is now. Is she okay?  Will she be okay?  Does her daddy lying next to me worry for her, too?  Or is it my responsibility to worry for the both of us?

The first time was not long after we had gotten her affirmative diagnosis. I remember my tears kept flowing and I lay in the dark trying to keep my breathing under control so as not to wake Cxdy. I didn't think the tears would ever stop.  Last night there were no tears; only concern and mental planning.

I get to check in on her at the perinatologist tomorrow.  My understanding is from this point on they'll be checking certain things to make sure she is still thriving in her environment on a weekly basis. Should she not pass on anything they check then they will weigh the options on whether to let her continue inside me or if it's time to come out.

I'm hoping for a good night's sleep.