All Caught Up

Which brings us to the present...

We're doing all right, Jameson probably a bit better than I.  Most days are good, some days are really hard.  After a particularly bad night following our appointment at Miami Valley Hospital, Jameson was able to get permission to come home from Seattle early, which I am unbelievably thankful for.  Just having him home helped me feel more at ease with the situation and less like I was carrying the weight of the world on my shoulders.  It was also a blessing because suddenly lots of little things started going wrong: the a/c in my car and the house had to be repaired, my computer started acting up (and temporarily deleting all of my letters to Abby, thankfully Jameson was able to recover them), our sad old lawnmower finally kicked the bucket, my car got a flat tire, and I failed my one-hour glucose test, which means I will have to go back in for a three-hour test to determine whether or not I have gestational diabetes.  I'm still not sure what exactly it is that God is trying to teach us, but I feel like he's trying awfully hard.

That's not to say it's all been bad.  My mom was able to come out and visit over Mother's Day weekend, which was wonderful.  Having her here did a lot to ease my mind and take my focus off of all of the worry.  We've also received a lot of love and support from our church community, and a couple of dear friends have offered to throw us a baby shower!  I am so looking forward to getting to celebrate Abby's upcoming arrival and all of the fun, normal things that come with having a baby.

Me and mom over Mother's Day weekend

We had our fetal MRI this past Monday, but have yet to hear anything about the results, and Jameson was able to briefly speak with the neurosurgeon at Dayton Children's hospital.  Unfortunately it doesn't sound as though we'll be able to actually meet with him and start devising a plan for Abby's treatment until after she's born.  Our MFM, Dr. Wenckus, had warned us that this might happen, but I'd been hopeful that we might be able to get going on things.

With everything that's been going on, I've been really affected by certain songs and words of wisdom I've come across.  Jameson's dad sent us this just this morning:

I thought of y'all this morning as I read this beautiful prose from Jean Vanier in his book "The Broken Body: Journey to Wholeness."

"Only God, the artist of life, 

can make an object that is living, 

with whom it is possible to enter into dialogue. 

Yet through procreation, God gives to man and woman 

the power to transmit life. 

But in doing so they act, not as artists, 

but as humble instruments of nature. 

The child that will be born is of their flesh; 

they will be able to enter into relationship with the child, 

but they cannot create a child of their dreams. 

They can only receive the child that is given to them." 

It is an amazing collaboration that we have with God!

It helps to be reminded that God does have a plan for Abby - one that we do no yet know or understand, but that is ultimately out of our control...and that's ok.

The Next Bump...

Tuesday May 6, 2014

Dear Abby,

Oh, little girl, it appears as though the journey we thought had ended a few weeks ago had really just begun.  Last Wednesday I went in for your fetal echocardiogram, which we had really only kept as a formality after receiving the negative Harmony results, and I got to see your precious, squishy little self again.  Dr. Wenckus was in a meeting when we finished, and I had to leave, so we scheduled a follow-up for the next day to go over the results and capture additional images if needed.  Suffice it to say, the follow-up did not go how I was expecting.  What I expected her to tell me was that your heart was fine, your arms and legs were still measuring a couple weeks behind, but that overall everything looked good.  While it still seems that your heart is ok (I still haven’t actually heard from the pediatric cardiologist), and your limbs are still measuring behind, they found something else of concern: indications of craniosynostosis.  I had never heard the word before, but Dr. Wenckus explained that the sutures, or fibrous tissue, that holds the plates of your skull together were prematurely fusing into bone.  They were able to see this on the ultrasound because there were indentations in the skull outline on either side of your head, though more prominent on the right.  The particular sutures that were presenting signs of craniosynostosis were the coronal sutures, that essentially run from one ear to the other.  She explained that the craniosynostosis is isolated in 80-90% of cases, but in the other 10-20% is associated with a variety of rare syndromes that I’d never heard of.  I took in as much information as I could, rapidly scribbling down notes about things like brachycephaly and mid-face hypoplasia, which I knew essentially nothing about.  Maybe it was because of my lack of knowledge on the subject, or simply the fact that I was sitting there with Dr. Wenckus as opposed to on the phone, or maybe it was because the last five weeks were preparing me for this sort of news, but I didn’t have the uncontrollable emotional response that I did that first time Dr. Wenckus called with news of unexpected ultrasound findings.  There was definitely a part of me that walked out of that appointment thinking, “well, there was bound to be something new.”  I don’t know if that’s a good thing, or a very negative way to look at this pregnancy, but I think my brain is trying to find ways to keep from becoming overwhelmed.  After taking yet another look at your anatomy (and determining that you may have mild left pyelectasis, but did NOT have six toes on one of your feet, which is something else they were concerned about), Dr. Wenckus let me know that they would be referring us off-base to Miami Valley Hospital for a second opinion.  

It was a lot of information to take in, and I soon realized there would be a great deal more to absorb after looking up craniosynostosis and trying to get a handle on what your daddy and I would need to prepare ourselves for once you arrive.  The implications were that you would need surgery performed on your skull whether or not there was a syndrome involved, and that you would probably need to wear a little helmet afterward to help your head grow nice and round.  When I started looking up the syndromes, I won’t lie, I was quite overwhelmed.  While quite rare, I couldn’t help but think that all of the markers we were looking at before, in addition to these new findings, probably indicated that there was a syndrome involved and that the craniosynostosis was not isolated.  Though some of the more telling syndromic attributes were absent in your scans, it just seemed to make sense to me that everything would add up to one condition, one answer.  But maybe it’s just not that simple.  Maybe the craniosynostosis is what caused your thickened nuchal fold, and maybe your shortened arms and legs really are just inherited from a long line of Reids with short arms and legs.  I don’t know, Abby, I just don’t know.

I was very nervous going into our Miami Valley Hospital appointment yesterday.  I wasn’t sure I could handle any more news of your condition, and ultrasounds (although a beautiful opportunity to get to see you kicking around like a “wild child,” in the words of the sonographer) have become stressful.  Watching them take your measurements and now being able to recognize when things look off have ceased to make the experience a relaxing one.  After a while, Dr. Sonek (a well-known Maternal Fetal Medicine doctor in the specialty of fetal diagnosis) came in to talk about what he was seeing.  He agreed that there appeared to be craniosynostosis of both coronal sutures, as well as possibly the sagittal suture.  He said that based on the shape of your skull we were not looking at brachycephaly as Dr. Wenckus had thought, but dolichocephaly, though I don’t know what that really affects.  After the scan was completed, I talked to Sara, a genetic counselor, about further options for testing, which included a fetal MRI (who knew there was such a thing) and amniocentesis.  I still don’t want to risk the amniocentesis, as it was explained that it wouldn’t have any effect on your care if a syndrome was diagnosed, but accepted the fetal MRI recommendation in order to determine if the sagittal suture is actually involved, and how that will impact surgery once you arrive.   Dr. Sonek also came back in to discuss things and mentioned that I have mild polyhydramnios - in other words, my amniotic fluid levels are too high.  There are risks of preterm labor and delivery complications with polyhydramnios, and that we would need to keep a eye on it for the duration of the pregnancy.

I’m not sure where we go from here, Abby bird.  It sounds as though everything will go back to Dr. Wenckus and then we will form a plan of action for the next few months.  Hopefully we will be able to have that MRI done and talk to a neurosurgeon about what we’ll need to do for you once you’re born.  We won’t know if your condition is syndromic or not until you’re here since we turned down the amnio, so all we can do is wait and pray that God has His hands on you and is taking care of you.  

In other news, your daddy and I had the opportunity to go on vacation at the end of April and your daddy finally got to feel you kick!  He’d been in Seattle since the end of March, and had to go back at the end of our week-long vacation, but I’m so glad he got to experience a little of the ninja dance party action that you’ve been entertaining me with for the last few weeks.  He also stayed up late putting together your crib and dresser, even though he was exhausted and jet-lagged.  We’re both lucky to have him.

I love you baby bird. Though the journey ahead may be difficult, we’ll get through this.

Love,
Your Mommy

Our little munchkin singing/yawning during her ultrasound at Miami Valley Hospital

Jameson (and Boone) assembling Abby's crib over Easter weekend

On vacation in North Carolina 

The Ever-Growing Belly

I started taking weekly pictures of my expanding self once I felt like I was actually showing.  Here are a few from second trimester:

15 Weeks (when I first thought that I was starting to look pregnant, hah!)

Week 17 (when my mom came to visit)

Week 20 (the halfway point, and when I got the idea to start using our nifty magnet board)

Nursery Crafting

I would not really describe myself as a "crafty" person.  I do not generally gravitate toward scrapbooking or creating little doo-dads and what-nots to adorn the house with.  However, when it came to decorating Abby's room, I liked the idea of personalizing it by making things myself.  It took a while for us to decide on a color scheme for the nursery, but I'm really happy with the yellow/white/gray motif we settled on!

The first project I undertook was a felt mobile.  I'd seen similar things on Pinterest, and figured I could probably make it happen.  I was so happy with how it turned out!

After that, I pretty much lost my mind.  I purchased way too much fabric and had to find ways of using it up!  Here's what it resulted in:

Closet Dividers:

Book Ends:

Embroidery Hoop Wall Art:

Fabric Flag Banner:

aaand throw pillows...

I can't imagine that this surge in craftiness will last past the completion of Abby's room, but it's really been fun while it's lasted!

Harmony Results In!

Saturday April 12, 2014

Dear Abby,

After what seemed like an eternity of waiting, we received your Harmony test results yesterday and they came back negative! Dr. Wenckus explained that according to the test, there is a <1 in 10,000 chance that you will have any of the three major trisomies, and they were able to confirm that you are, in fact, a girl (no delivery room surprises for us)!  She said that we were welcome to keep the fetal echocardiogram we’d already scheduled, which I was happy about, I’ll take any chance I can get to see my beautiful baby girl.  I asked if whether the soft markers we’d seen might indicate any other conditions, but she seemed to think that was very unlikely, and we would never even notice that the measurements had been slightly off.  She specifically said that you wouldn’t come out with a fat neck and short little arms and legs, but at this point I honestly wouldn’t care if you did.  Your daddy and I were prepared for whatever the outcome of the test might be, and the difficult process of waiting for the results brought us so much closer together. I cannot express what a relief it was to not be waiting anymore. 

Abby, the last couple of weeks have been some of the most emotionally challenging, but uplifting, of my life.  I learned a great deal about what it would be like to be a parent to a child with Down Syndrome, and I feel as though the stories I read and the information I gathered will not only help me to be a better mommy for you, but they will truly help me be a better person.  Before our anatomy scan I was petrified of having a child who was different from other children.  I knew that I would cherish the child I was blessed with, but I seriously doubted my ability to be strong enough to cope with whatever challenges their unique situation might bring.  I don’t feel that way anymore.  I know that there would be struggles, but that there would also be triumphs.  I stopped looking at these children for what they might not be able to achieve and started seeing the amazingly positive impact they have on the world around them.  If, once you’re born, you should have something that sets you apart from other children, I now know that I WOULD be able to handle it, and that I would work everyday to encourage you and lift you up.  This experience has helped me to accept whoever you turn out to be and I hope it helps me and your daddy to guide you to be a sensitive and loving individual, someone who sees beauty in everyone around them and cherishes each person for what they bring to our world.  

I will say, I think you not having Down Syndrome will pose its own unique challenges.  I had started to think maybe we could avoid a lot of teenage girl drama and that I might be able to keep my baby with me forever, haha.  But God has given us you and it is you that we will tailor our love and care toward.  I am so grateful and humbled that he has trusted us with your life, I hope we do a good job.  I love you Aberdeen Wren Locklear, no matter what.

Love,
Your Mommy

Holland

While waiting on our Harmony test results, I came across the following piece.  I thought it was a beautiful way to look at the possibility of having a child with special needs.

WELCOME TO HOLLAND
by Emily Perl Kingsley.

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.

A Bump in the Road

After our 20 week ultrasound, things started to get complicated.  This was the first "Dear Abby" letter I wrote (sorry, it's quite long)...

Tuesday April 1, 2014

Dear Abby,

We had our anatomy scan on Friday March 28, 2014 and your daddy and I found out that you are a girl! Of course, he had known all along and wasn’t the least bit surprised, but I was and I was thrilled.  I couldn’t wait to meet you.  I was so excited to give you sweet kisses and tell you how brilliant and beautiful you are every single day.   The ultrasound tech joked with us about how wiggly you were and told us what we were looking at every time the view on the monitor changed. My sweet, wiggly little sunshine girl.  We got to see your heart beating away, your precious little nose and fingers, and the little legs that remind me all day long that you’re still in there.  We had so much fun.  We had already decided that we were going to name you Aberdeen Wren and I immediately thought of you as our little bird.  After the ultrasound was done, your daddy had to go to work, and I had to figure out how I was going to spend the rest of the day while I was bursting to tell everyone our wonderful news.

A few hours later I was sitting at the computer adjusting and readjusting the registries we’d already started for you when I got a call from Dr. Wenckus, the genetics counselor at Wright-Patterson AFB.  After introducing herself, she calmly explained that the ultrasound we’d done that morning indicated a thickened nuchal fold, a soft marker for chromosomal abnormalities like Down Syndrome.  She said that I needed to come back in on Monday for a more detailed ultrasound to confirm the findings and recheck the rest of your measurements.  She said that based on the results, we would then be recommended for additional blood work or an amniocentesis.  I remember being shocked and that all I could do was just keep saying OK over and over again, barely processing what she was saying.  I had heard of soft markers, but didn’t really know what they meant, all I could hear her saying was that something was wrong.  I had already been so worried this whole pregnancy that something would be wrong or go wrong, and here it was. I suddenly couldn’t handle it anymore.  As the tears started to well up and my voice started to crack, she said something nice about not worrying and we hung up as I burst into uncontrollable sobbing.  Something was wrong with our baby bird.

  

As soon as I could pull myself back together, I called your daddy and told him about Dr. Wenckus’ call and he said that I should come pick him up.  While I was driving, your Grandma and Grandpa Reid called a couple of times to check how things had gone at the ultrasound.  I finally had to answer and told them through tears what was going on.  They were very reassuring and reminded me that there was always a chance that nothing was wrong and that they would love you no matter what happened.  After I picked your daddy up from work we sat and talked in the car in a parking lot near Red Robin about our concerns.  All I could think was how worried I was that your life would be so much harder.  I knew that we would still love you more than anything, but I didn’t want people to make fun of you.  I wanted everyone to immediately see the brilliant, beautiful girl that I already knew you would be.  We called your Grandma and Grandpa Locklear to tell them that you were a girl and the news we’d gotten, and of course they were wonderfully reassuring as well.  Eventually we talked to all of your aunts and uncles and they were all thrilled to hear that we were having a precious little princess.  The rest of the evening went by in a blur.  I know we had dinner with our friends and saw the movie Noah (which was weird), but the whole time all I could focus on was how worried I was about you.  By the time we got home we were more exhausted than I can ever remember being.  

The next couple of days were hard.  We were waiting and worrying and I did a lot of crying. I spent a lot of time thinking and a lot of time spacing out as my thoughts became overwhelming. I also did a lot of reading, probably too much reading, about soft markers and what they mean.  I read about various genetic conditions and chromosomal abnormalities. I read about possible additional testing we could do.  I took in whatever information I could because I didn’t know what we were facing and that was the hardest thing to deal with.  Was it just Down Syndrome we should be concerned about or was it something else? I remember thinking over and over again as I looked down at my belly, “you have to be ok, please be ok.”  I was terrified that whatever was wrong would mean I might lose you. I worried about my ability to be a good mommy for you.  I want to give you the absolute best chance at a wonderful life and I wasn’t sure I could do it.  Sometimes I questioned God about why He would choose us to be your parents, why He thought we were even capable.  I don’t think I ever questioned why He would do this to us, I still thought of you as an absolute blessing, but I questioned why He would put so much faith in us.  On Sunday morning I had to sing at church before taking your daddy to the airport as he had to leave on a trip to Seattle. After talking to a couple of friends, I decided that I would go to the detailed ultrasound alone so that I would feel more comfortable asking the rather long list of questions I had composed over the weekend.  I wish your daddy could have been there, I know he does too.  

I went into Monday’s detailed ultrasound very stressed but significantly less tearful than I’d been for the past couple of days.  I had done my research, I had my questions printed out, and I felt like I was ready for whatever was about to come.  I was almost right.  During the scan I watched as the nurse logged your measurements and noticed when they were not within normal limits, but I was ok.  Your nuchal fold measurement was a little too big, and your femur and humerus lengths were a little too small, the amount of fluid in your kidneys was just within normal limits but still something to look at.  But above all, Abby, you were beautiful.  I loved getting to watch you kick and roll and explore your little world.  Nurse Laura seemed a little less than thrilled than I was that you wouldn’t ever hold still, but I loved getting to watch my wiggle worm.  I even got to see your squishy little face on a 3D scan.  After the measurement taking was complete, Dr. Wenckus came in to talk about the results.  We went through all of your pictures and measurements and she mentioned all of the things I thought she would.  Luckily she did NOT mention any major medical problems.  Your heart looked great, your brain looked great, your spine, lips, feet, hands, eyes, abdomen, and overall structure all looked great.  They plugged your measurements into the computer and produced a printout of our risk assessment: a 1 in 3.6 chance that you would have Down Syndrome.  I was expecting the risk to be high, but not quite that high.  It was a little daunting, and once again, I got a little teary.  Dr. Wenckus expressed that if it were her calculating the risk as opposed to the computer she probably would have left out the femur/humerus markers, making it more of a 1 in 40 chance, which is closer to what I’d been expecting.  She gave me lots of information, I asked the remainder of my questions, scheduled a fetal echocardiogram just in case, and decided to go ahead with the Harmony test, a fairly new blood test that can measure fetal DNA in the mother’s bloodstream and whose results are 99% accurate in identifying Down Syndrome (T21) and other chromosomal abnormalities.  Dr. Wenckus and Laura expressed how stressful they knew the circumstances to be and encouraged me to have a good week.  

So now we wait.  I am doing a lot better today, feeling much less worried and more optimistic, and looking forward to the future that I will get to share with you.  It helped immensely that Dr. Wenckus seemed confident that T21 was the only condition we were looking at, as opposed to a number of others that would have been so much scarier.  Since then, I’ve been reading blogs and testimonials of moms with babies with Down Syndrome, some of which were diagnosed in utero, some of which weren’t.  They are lovely and inspiring, and I have made my peace with whatever the outcome of the test is.  I am thankful that we should have an answer in a couple weeks so that we can best prepare ourselves and the rest of the people that will be in your life for whatever is to come.  Whether or not you end up having Down Syndrome I will continue to love you and forever worry about my ability to be the best parent for you.  I can’t wait to meet you, baby bird, our life together will be so beautiful.  

Love,

Your Mommy

The First Half

The Big News:

We first found out that we were expecting on December 9, 2013.  Though I had taken a pregnancy test a few days prior, it appeared to come back negative.  I decided to wait a couple of days and try again, and it came back unmistakably positive! Jameson had left for Seattle for work that morning, so we had to celebrate over the phone, but oh well!  We were certainly excited, but I was shocked at how fast the worrying kicked in for me.  I became almost instantaneously concerned that something was going to go wrong, or that I would do something that would ruin everything.  I had always imagined that it would take us months or years of trying to get pregnant. When it didn't (really only a month or two), I found that while I was thrilled, I was also very very nervous.

Knowing that we had Christmas gatherings coming up and that it might be a difficult subject to avoid, we told our families just a couple of weeks later.  As it turned out, it was a good thing we did, as Christmas was right about the time the "morning" sickness kicked in.

Pregnancy Poisoning:

I do not know who came up with the term "morning" sickness, or what they were smoking at the time, but the title is extremely deceptive.  I prefer the title: pregnancy poisoning.  It was raging full-force by week 7, which for me meant puking uncontrollably ALL DAY LONG.  I could not keep down a single thing - not water, not crackers, nada.  I appreciate all of the people who attempted to give me advice on how to deal with the nausea, but it was not at a controllable level.  Jameson ended up taking me to the emergency room where they gifted me with my new best friend, Zofran.  However, even with the Zofran, I was still throwing up multiple times a day until I could get the medicine to stay down.  After that, it was relegated to the constant queasiness that it sounds like most people with morning sickness deal with, without the unending vomiting.  At 13 weeks I discovered that taking the Zofran at night meant that I could finally keep my breakfast down in the morning and helped launch a much happier time in my pregnancy.  I was still nauseated and still puking, but much less frequently.  And thus it has continued.  I am writing this at the beginning of my third trimester and have not yet been able to stop taking the Zofran without getting super sick again, but as it is so well controlled on the meds, I can manage.   Honestly, I don't know what I would have done this whole time without this magical medicine.

The Most Exciting Moment of the First Trimester:

We got to see our little peanut for the first time at our 11 week appointment on base.  While what we were looking at on the ultrasound monitor only barely resembled a baby at this point (more like a jelly bean), at least it was proof that there really was something there!  The nurse/midwife did a dating scan in order to determine our due date (August 11, 2014), and we got to hear the fast little heartbeat.  After weeks of constant worry about whether things were going smoothly, this day was SUCH a blessing.  

Since this appointment confirmed that things were going well so far, we decided to go ahead and announce the news to the world (aka Facebook)!

The Beginning of the Second Trimester:

The first few weeks of our second trimester was a period of smooth-sailing.  Everything seemed to be going well with our little one, I had figured out a Zofran regimen that kept my nausea pretty well under control, and at around 16 weeks I started to feel the little bumps and nudges of our wiggle-worm moving around!  I started to have a fun time researching baby products and starting registries (even though it was absurdly early), and we transformed our circus-striped office into a much more neutral (and thusly, pleasant) space for our future arrival!  These weeks zoomed by compared to the first trimester, and a part of me wishes I could remember them better, as it was as calm an experience as we were going to have...

Welcome!

Hello out there friends and family, and welcome to our new journey into parenthood. So far this pregnancy has been anything but smooth, more often resembling a roller coaster ride or a trip through some white-water rapids, but we wanted to try to keep you up-to-date on what's happening and how we're doing.

Firstly, we are looking forward to the arrival of our little one with great anticipation and can't wait to see what God has in store for the three of us. I am due August 11, 2014 and we are having a little girl! We have decided our baby girl’s name will be Aberdeen Wren and have already started referring to her as Abby. We think it is a perfect fit for our baby bird. 

Secondly, we already know that in addition to the typical trials of parenting, Abby is going to have some hurdles to face upon entering this world (to be detailed in upcoming posts). Rather than trying to face them all on our own, we wanted to make sure that we included others in both our struggles and our triumphs. We have wonderful people in our lives, and we want to make sure that you all are a part of Abby's life as well.

Thirdly, some of this blog will probably take the form of letters I've been writing to Abby (hence the title).  I never really intended them to actually go to her, but it was easier for me to express what I was feeling to a person rather than just journaling, and who better to write them to than the person they're about.

I've really never blogged before, so this will be a learn-as-you-go kind of process.  I don't plan on paying a whole lot of attention to things like grammar and formatting (gasp!), but please bear with me!  I think that's all I have for right now, but will check back in soon, thank you for starting this journey with us!