In spite of our miracle, reality has hit, the adrenaline of the last 10 days has worn off, sleepless nights are plentiful, and worry is still there!  Surprise... life goes on.  And sometimes I sit in the muddle of it all, and try to figure it all out.  And I have no answers, and I know that while one journey is finally over, another one has certainly just begun, and it proves to be probably an easier journey at times... at least right now... but one that doesn't last just 9 months, it will last for the rest of my life. 

It isn't dissimilar to the journey that any mother is on once they lay a small, helpless baby in her arms for the first time.  I am normal in many ways, and worry about normal things:  oh no the baby has bad diaper rash, or why is she so fussy, or is she getting enough to eat, why did she go up 3 ounces in 3 days, just to be down 1 ounce 5 days later (today's sour news).  Normal mom things.  Its comforting to know that there is some normalcy in our lives these days, because that normalcy was lacking for so many months!

And yet, I worry about Lily's future already, and what lay in front of her.  How will I one day explain to her that she isn't like other girls.  That she'll never be able to have her own baby, that she will need shots every day for years just to make 5 feet tall?


Deep down I know that I am certainly injured and possibly permanently scarred from the last several months of my pregnancy.  How can one not be?  I also know my hormones are completely out of whack from having a baby 10 days ago.  Will time heal me?  Will time heal any of us?  I don't know the answer to that.  But I know that I will soon need to figure out a way to process all of this, and I fully expect it to take months if not years to work through that. 

I still have deeply rooted issues of self-esteem that have gotten worse, not better from this pregnancy.  See... this was the pregnancy that was supposed to heal the hurt from my pregnancy with "L".  This was the pregnancy that would prove my body is capable... it works!  Those things didn't not really happen.  And it hurts!  Yet, to have walked out of the hospital a week ago with Lily in my arms was also beyond my wildest dreams and an indicator of major success in the midst of so much failure.
Don't get me wrong.  I am still reveling in the miracle that Lily is, but I am now starting to also deal with the reality of where this leaves us.  To have been so blessed with a miracle, leaves you with a bit of a "why me" feeling.  So many people ask for their miracles, and they are passed by.  So why us?  Why her?  I cannot help but think of big things for her, even though she is barely 5 pounds!

"A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl."
-- Stephan Hoeller

I might be injured, but without that I certainly would not have my pearl, sweet little Lily.

On Tuesday afternoon I was discharged from the hospital.  I expected to walk ( ok be forced to ride out via wheelchair) out alone, without my baby.  I've prepared myself for this since the day we found out about her condition back in May.  I have done this before, 4 years ago, it was one of the worst days of my life.

But on Tuesday afternoon, I was wheeled out of the hospital with a baby in my arms!  Lily is home!  It is surreal and wonderful.  And even though we will have lots of future appointments and follow ups, she is our happy ending. 

Tired but happy, we are going home!

When I started this journey 3 years ago, this is what I wanted.  To lose enough weight, get pregnant, and have a baby I could bring home with me.  Often derailed but never deterred, the ultimate goal is now realized.  It didn't come the easy way, it never seems to for me.  It came through some major hardships and pain - pain that I may be working through for a really long time.  But in the end this is better than any Weight Watchers goal or lifetime award!  This is why I lost weight.  Lily is my ultimate prize, and now she is finally home.

I have spent many nights in the last few months begging for God to spare my daughters life. We haver certainly received the miracle that we asked for. I don't know why, but it came in the form of a 5 pound 9 ounce bundle. This little girl is here for a reason... She is going to do something amazing. She is sleeping in my room at the hospital right now, and has been since Saturday night. She had about a 36 hour NICU stay. The shortness of it still takes my breath away. Her MRI found no connection between the mass on her head and her brain. Her heart was found to be normal by the Echocardiogram. Her kidney function is normal. Her chromosomes however were found to be missing precisely one "X".

Lily officially has Turner Syndrome and while I'm supposed to feel sad (at least that's what people are expecting from me) I am instead overjoyed by the fact that she made it from my womb into my arms and that after months of waiting we finally have our answer. I feel like I want to go out and have a party!  After months of waiting we have a diagnosis and are ready to move on with our new life.  She is a survivor and we are happy to add her to our family. She has some cosmetic surgery ahead of her and yet she is one of few Turner syndrome girls that does not have a major kidney or heart defect.

Initially we were told they still wanted to do surgery on the mass on her head and I just found out it's canceled... We'll follow up with a cosmetic/general surgeon in a couple of months!

I'm not sure how to process this all right other than to say that if you still don't believe in a God and the reality of miracles and the power of prayers then you haven't yet met my daughter! She is absolute proof of a loving, living God.

By the way... I posted a picture of dear little Lily on Twitter this afternoon. Follow me (@fatlittlelegs) to see it. I will post more photos here once I get home.

Lily Grace was born this morning at 8:39 am.
She is 5 pounds and 9 ounces! Bigger than we thought!
She is in the NICU, and having an MRI, but she is stable and I've even held her already.
I will admit the growth on the back of her head is interesting... No one seems to have seen anything like it before.
I am doing well and very much ready to get out of this bed when they'll let me.
I will post pictures as soon as I figure out how from my iPad.

Amnio results from this morning showed that our baby's lungs are mature and it's a go for tomorrow morning dark and early.  Yes, the amnio was as bad as I thought it would be, but we had some complications.  I will leave it at that for now.

Little one we are ready to meet you in less than 12 hours!

I leave you with this.  A song that speaks to me lately.

I am officially full-term today! This should be my last weekly pregnancy update. 
I don't have much to say that I haven't already said over the past week.  We get through today, then tomorrow is the amnio, and hopefully Friday we have delivery!

Sleep does not come easy to me these days.  My mind is racing with all sorts of thoughts!

In anticipation of having a baby in the house again, I've spruced up the nursery, and I think I have most things ready and waiting... this room and this mom really hope a baby can come and stay in it soon.

With Monday’s doctor appointment now out of the way, I am headed into 1 more doctor appointment on Thursday, where as the explanation sheet I received puts it:

 “a needle will be gently inserted into your stomach”
Umm… yeah right… I’ve never thought of gentleness and needles going together.

“… You will feel some pressure”
Not to mention the feeling that your heart is going to thump out of your chest!

Is this supposed to make me feel better?  Seriously, how about the “loved one” has the needle gently inserted instead of me?

Gee thanks… a Band-Aid.  I feel much better knowing I will get a Band-Aid.  Will it have a cartoon character on it too?

Ok… now that I’m done with my freaking out about the amnio… we can continue.


Time for some truth.  I really do not have it together at all right now.  I am trying hard to stay positive and not scared, but nothing is helping.  I want to have a calmness over me these next few days and especially Friday, but I’m having a hard time getting there.  The thought of the surgery itself is really bugging me.  I’m definitely a type A person, and I need … ok I guess I want to be in control.  Everything is so out of control, and has been for months now!  Every morning I hug my little “L” as I send him off to preschool, and wonder if this is the last time I’ll see him before I have my surgery (I really should say give birth to my daughter, but since we’re being honest here that is really what goes through my head). 

Yes... I'm still here and I'm still pregnant.  I was told to keep doing what I'm doing because obviously it is working.  No signs of swelling or high blood pressure, and all biophysical profiles have been 100%!  Now I just pray that the amnio comes back positive on Thursday for lung development, so this little girl can be born on Friday.

As I sit here this afternoon, I ponder, what should I be doing with my last week of pregnancy?  Well... this morning it was pushing a much too heavy cart of groceries around SuperTarget, and then getting a pedicure.  Gotta have cute feet if nothing else on me is cute, right?  My husband thinks its a waste, I consider it a small investment in my mental health.

Then there is the pantry cupboard to organize of course... I mean, who in their right mind goes into their last few days of pregnancy without organizing their pantry cupboard, right? 

Of course there's laundry, and suddenly I find myself freaking out that if I do laundry today and not again this week that my 4 year old will run out of underwear at the very moment of my C-section, causing him to have to "go commando" until I am released from the hospital.  Ah... it almost brings a smile to my face to worry about something so mundane.

Oh yeah, and why wouldn't I take on a couple of really small projects at work this past week... I mean, most people that are mere days away from having a baby do that, right?

Of course I realize that I am definitely trying to keep my mind... if not my body, busy.  As busy as possible.  So I don't have to think for one minute about what is about to happen... I don't have to think about the IV and the spinal, the fact that another human being (be as great as she is) is mere days away from cutting me open, taking out the human life I've been growing since January, and sewing me back up! 

As I read the other day "I am fearful, but I long to be fearless." source
I hope this week I can get myself a little closer to some peace in spite of the fear.

Last night I spent a little time reading through most of my blog posts (at least the bigger ones) about this pregnancy.  What a little trip down memory lane.  And for the most part, it was a good trip.  A reminder of where we have come from since 19 weeks.  I remember that Thursday morning in May as if it was yesterday.  I remember my OB telling me he was so sorry, and I remember walking out of the office feeling like someone had punched me in the gut, and sitting down on the little bench just outside the door and bawling my eyes out, and screaming, "Why?"  I remember looking at my husband and gritting my teeth through the tears, and saying "Why doesn't anything ever work out for me?"  I had spent the last 2+ years prepping my body to carry this baby.  I felt betrayed, abandoned, and filled with the most immense sadness I can't even think of the words to describe.  It was raining that day.  It was raining hard.  It was fitting.

As the weeks went on I shared my story, and I started getting notes of encouragement and prayers.  From people who had walked similar journeys as well as ones that hadn't. Some of their stories touched me deeply.  I found out that people all over the world were praying for my baby!  I still had a lot of days of bitterness, but some of my bitterness turned as the days and weeks passed.  I endured doctor appointment, after appointment of different hypotheses and guesses as to what was wrong with our baby, so many so that I received a printed list, on an 8-1/2 x 11 sheet of paper, single spaced, of every "guess" last Thursday at my appointment.  The "guesses" took up 3/4 of the page!  I still heard what the doctor's said at each appointment, but at some point, I stopped listening.  And while I comprehend every word of what they've told me, and I've done a ton of research to make sure I'm educated enough to make important decisions on behalf of my daughter, I stopped trying along with them to guess what this baby would be like when she was born.  I finally said "I don't care anymore" after I was offered a second MRI.

Today I find myself at 36 weeks pregnant.  1 week and a day past any previous pregnancy, and 1 week until I'm officially full term.  I have dreamed of getting to this point, longed for it, and now, I'm not going to lie... I am terrified that it's almost here!  Maybe even more so than earlier on.  I have conjured up images of what this baby will look like when we meet her face to face - everything from the horrifying to the not so bad.  I have filed every ultrasound picture I've been given immediately away, and barely looked at any of them again.

Then yesterday... at my appointment I saw this on the screen:

And the only word I could think of in my head was.... PERFECT!
I didn't think of birth defects, or chromosomal conditions, I didn't hear the word trisomy, Turner Syndome, or flat profile, I didn't think about encephaloceles, enlarged hearts, hydrops, or small limbs.  I didn't even recall the moment I was asked after my 19 week ultrasound, "What do you want to do?"

I saw a baby's face... a nose that looks like her brother's... and perfect, and maybe even slightly chubby cheeks.

No matter what happens - whether we get a happy ending or a not so happy one - I know one thing.  My daughter is perfect,  and every agonizing minute of this journey has been 100% worth it.

Happy last week of pregnancy to me!

#1 - Wow, you look so small, I didn't even think you were due that soon, you are so lucky!
My answer:  Yes, my baby is super small and not growing... should mean lots of extra hospital time for us... yes lucky me!

#2 - Everything is OK now, right?
My answer:  Um... no, unless you count an entire printed out sheet of possible problems as OK.

#3 - And your information is still the same?  (said to me at my doctor's office at my Friday appointment, when I just had a Thursday appointment)
My answer:  Nope... we decided life wasn't exciting enough already, so we moved yesterday evening!

#4 - I bet you're excited.
My answer:  Oh yes, I can't think of anything better than getting cut open, and getting a much too tiny baby taken from me, just to be put in the NICU on lots of tubes and machines.  But, I guess if you are talking about being able to finally regain control over my own bladder again, and wear more than 2 pairs of pants again, then yes... I'm excited!

Most of these are said by people that have no clue my situation, so I don't blame them, but some days you can't help but feel a bit jaded when you are walking this path. 

Another doctor appointment today - Friday's appointment was happily uneventful - and hopefully 10 more days from today we will have a baby!

September 1^st.   I can’t believe it is September 1^st today.  Even before we knew something was wrong with my pregnancy, I have always said that I wanted my baby to be born in September, and now there is no question that she will be.  Plus, I like sapphires, and I already have a peridot ring from when “L” was born.

That was the paragraph I wrote this morning… before our doctor’s appointment.  After so many weeks of “boring” appointments, we ended up leaving this morning’s appointment with extra doctor’s appointments.  Now I have an appointment tomorrow, Tuesday, and still my normal one next Thursday. 


There are also some Doppler flow items that are starting to look slightly abnormal, so the new protocol will be a biophysical profile every 4 days now, instead of every week.  And… the holiday weekend screwed that up for us this week (which is why I have the appointment tomorrow).  Thank God that by some strange act, my health insurance company suddenly decided to start covering my prenatal care at 100% again (as state law requires)!

While there is no immediate need for me to deliver, it will now be a weighing game between baby being better on the inside or better on the outside.  I can’t help but feel that the end is near.  At least my bag is packed this time, right? 


If I have to smile about one thing today it’s that the ultrasound tech could actually see the baby’s hair on the ultrasound.  She has hair!  With the all big, bad things we’ve been told during ultrasounds, sometimes it’s just nice to know the normal, little things too!