Happy Birthday, My Eleanor Grace

My Precious Ellie Grace,

Today is your Birth Day. Happy Birthday, dear one! We have so anticipated the arrival of today and yet, it is surreal that we will meet you face to face. Even though we will meet you for the first time today, I feel as though I know you so well. You have been a part of our family since we first learned about you back in December. I remember well the second I realized I was truly pregnant. I remember the great joy in our hotel room early that morning as I shared the news with Daddy. Then, we woke up your big brother, who was having surgery that morning, to tell him the great news. We cuddled in our bed for the first time as a family of 4. Will declared that morning that you were going to be a girl and your name should be "Caroline Ellie Ellie Grace." He still calls you that. I hope for your rehearsal dinner someday when he makes a toast to his baby sister, Caroline Ellie Ellie Grace.

Though you instantly fit into our family, sweet Ells, you also instantly made it clear that you have your own identity. Though you often made your Mommy sick, I have to admit I was always so relieved as I took it as sign that you were strong. Secretly, I began to wonder if perhaps you were going to be a girl - I was only sick once with your brother.

I remember the first time I heard your heartbeat. Oh, how I love that galloping sound. Your big brother grew quite adept at locating your heart beat with our home doppler as well. We love listening to you, Ellie. I have heard your heartbeat now for countless hours. I have seen your face and your body more times than I can count. I have watched you try to nurse inside my womb. I have felt you move. I have watched you hiccup. I have watched your hair flowing inside me.

And yet, I have never grown weary of watching you and listening to you. It is amazing every single time.

Ellie, you became Daddy's girl the moment we opened the envelope and learned you were, in fact, a girl. He has such dreams for you, Sweet Ells.

I long to watch you two develop your own relationship. He wants to protect you and to be your hero.

Have I told you how very loved you are?

Ellie, your big brother also has big plans for you. I hope you were paying attention on the days he has tried to teach you baseball and all about pirates. He expects you to come out swinging swords and bats!

He longs to be your superhero and fight your battles and rescue Princess Caroline Ellie Ellie Grace.

He prays for you and is willing to share his gigi with you.

He loves you dearly and has never met you.

He is full of kisses and hugs and zerberts for you. I can't wait for him to give you those in person - today.

He loves to cuddle, Ellie. Will you also be a cuddler? I pray so.

Not even born yet and you have taught us so much about our Father. You have sent me to my knees and forced me to read Scripture in a new light.

As I read Zephaniah 3:17 over you, I imagine God tonight, rocking you for the last time in my womb, gently stroking your hair and doing His last minute final touches while He prepares you to enter our arms.

Ellie, He takes such great delight in you, His creation. I imagine Him singing your lullaby to you one last time tonight.

Do you realize how precious you are to Him, Ellie Grace?

You are fearfully and wonderfully made.

In many ways, my faith is stronger for carrying you, Ellie. Thank you.

I have such mixed feelings today, my precious one. I am excited to meet you. Your pink dresses and hair clips and jewelry are packed. I so want to feed you and hold you and kiss you.

I want to celebrate you.

And, yet, I am sad.

I have loved carrying you under my heart.

I love having you all to myself all the time. I love knowing your every movement - your somersaults and stretches. I laugh at your frequent hiccup bouts. I love the line you give me on my tummy. I love the way I feel about my body when I am carrying you.

I will so miss having you with me all the time. I will miss talking to you as Ellie in my Belly. I will miss feeling you and rubbing you and not knowing exactly what I am rubbing!

I will miss carrying you.

Ells, when doctors suggested that I spend time with you while I could, I made a list. I determined the things I wanted to do with you, my daughter, while I had an opportunity.

I read to you.

I played music for you (your preferences made me giggle.)

I took you to see Little House on the Prairie - the musical

We took you to the ocean.

I took you on a boat.

We jumped waves together and hunted crabs.

I swam with you.

I taught you some of our favorite recipes.

I taught you how to fold a towel.

I purposefully laughed a lot - loudly - so that you would not just think I cried all the time.

I took you to the movies.

I took you to the zoo.

I took you on airplanes.

I made up lots of nicknames for you.

I introduced you to friends in my friends' bellies.

I danced with you and your big brother and your daddy.

I sang to you.

I watched Cinderella with you - just us girls.

We had family watergun fights together - being in the belly did not exempt you from being fired upon!

Your brother taught you baseball.

He played pirates with you in my belly - you were the first mate and sometimes the co-captain.

We've played board games and you even had a turn (your brother played for both himself and you)

We've been very busy...

But I realized recently that I couldn't do it all, my Ellie girl. I couldn't accomplish every goal and dream I had for my daughter with her still in the womb.

There are too many things I long to do with you.

And I don't want to rush through life - not enjoying each day and even the seemingly mundane.

I want to enjoy you.

I need you here - with me, for a lifetime.

And even then, I'm not sure it will ever be enough.

We have a lot to do together, sweet Ellie.

Today, Eleanor Grace, you will be born.

I will no longer carry you under my heart.

Today, I welcome you to my arms.

I am forever grateful for the time I have had you inside.

You have taught me, blessed me, and changed me.

I need you for a lifetime, sweet Ellie Grace.

I am honored to be your Mommy.

I can't wait to meet you!

Happy Birth Day,

I love you,

Mommy

Ellie in the Belly - 37 weeks, 7 days

This is my final "Ellie in the Belly" post.

She is scheduled to be born tomorrow via c-section around 9am.

I have tried several natural methods to get sweet Ells to flip - I've laid upside down on an ironing board. I've done handstands in the pool.

I did not do flips off the diving rock while swimming the other day - that seemed like I would be asking for a major injury - not to mention the splash I would have made! (see our swimming contest pics below!)

But, today, during our ultrasound, she had not moved back into the correct birthing position. She has moved some - but is actually now somewhat transverse/breech.

She did great on her BPP today! ("Beautiful breathing" according to her doctor! :))

They'll check her once more in the morning but, at this point, we are scheduling a c-section unless she shocks us all on her next ultrasound.

It's possible they may need to do an "extension c-section" involving a larger than normal incision - this depends on her flexibility.

Tomorrow - YIKES!

While I am excited to see her finally in full color, I am really struggling with the c-section.

I am familiar with the "v" method so part of my struggle is doing something I am unfamiliar with.

Part of my struggle probably stems from once again, feeling out of control with this pregnancy - another loss of normal and of my plans.

Most of my struggle is based on fear.

She will likely be taken away from me immediately and I will be stuck in recovery. Reagan will accompany her but I am dreading being separated from her, and in pain myself, and not knowing how she is doing or if she is thriving and able to live.

R has promised me he will go with her and that if she is declared terminal, he will make sure she is held by him.

Needless to say, I'm a nervous wreck.

Which explains why I am not napping right now but, rather, am sitting in Starbucks across from our apartment blogging.

I was too nervous to nap.

Oddly enough, things seem so "stable" with her in the womb. I'm so afraid of being separated from her and all the unknowns that are coming. Sometimes it's more comfortable to not know.

I vividly remember the emotions of putting Will in the NICU and the exhaustion that comes from the testing and evaluations of having a NICU baby. I just don't feel ready at all for that. I don't know that I could ever be "ready."

I don't know what to expect with Ells. She hasn't exactly been predictable!

I'm worried about Will. I'm sad I won't be able to hold him for a few weeks. I carry him a lot - especially when he is not wearing his prosthetics.

I don't know what to prepare him for.

I'm not being very nice to R - I'm so nervous and scared about the future for our family and for Ellie and I'm taking that stress out on him.

I am the perfect example of the hormonal, emotional, pregnant woman.

We have enjoyed some good family time in our apartment that has been loaned to us here. We don't have a tv or internet there and so it has been nice to just play music, talk, read, etc. We've played lots of games with Will. We are enjoying the view (we're on the 24th floor and the nighttime view is really pretty of the city all lit up!) We're enjoying how easy it is to clean an apartment - just plug the vacuum in once!

My mom & a friend, Sandi G., cleaned the apartment last week and even hired carpet cleaners & vent cleaners and then they moved us in -

so it has been so nice to feel settled immediately. We are so thankful for that gift of time they gave us as we haven't spent our weekend cleaning or unpacking.

We're enjoying our family time - wrestling and tickling Will, reading stories, playing lots of games, playing race cars, and my favorite - popping popcorn & watching Will's birth video!

He loves to hear the story of his birth & now enjoys watching the video... and has LOTS of questions!

I'll post when I can tomorrow.

Thank you for covering Ellie's birth and our family in your prayers. We are so blessed and thankful for you.

Specific Ways You Can Pray:

That Ellie is able to live

That her doctors and nurses have wisdom, discernment, and sensitivity

That Will is protected from any insensitive comments

That I can nurse Ellie

That Ellie doesn't require a NICU stay

That we are able to figure out a diagnosis and plan for treatment

That R & I are able to think clearly to make the best decisions for her

That my recovery will be super quick so that I can be with my daughter

No scary surprises (good ones are welcome!)

That her birth would be full of celebration, joy, & laughter!

Ellie in the Belly- 37 weeks

We made it!!! Ellie in the Belly at term!!!

37 weeks!

I am typing this quick update from my phone in a hospital bed in labor & delivery in Tyler. Went for weekly bpp and sweet, unpredictable Ells didn't do her breathing exercises so my new dr sent me to hospital for further monitoring.
Currently Ellis not passing her NST so the nurse just had me order lunch & juice so hopefully that will help her pass.
I'm counting my blessings in that this is a comfy hosp bed and I have a book- forced relaxation.
If she doesn't pass, he said he will send me to Dallas this afternoon.
Sweet, precious, often unpredictable Ellie.
Pray we get to stay put here for a few more days please. And hopefully Will will forgive me for not being able to go swimming before nap time like I had promised him back when I thought this would be a quick appointment- 2 hours ago...
It breaks my heart not to be reliable and keep my word to Will. I called a minute ago with tears in my eyes to say I'm sorry & explain that I am in a hosp & he was quite happy. He has his Lovie dressed as a princess with a crown & sceptor & he is a knight who had to rescue her from the dragon. And he turned me into a frog while we were talking. And then I had to be a puppy. Guess he is ok. :)
Update- food not here yet & Ellie still "nonreactive" though she is hiccuping. I have been playing her her fav songs on my phone.

Update at 3:40- ells finally passed her nst- after 2 hrs! Dr kept me on a bit longer just to be safe before discharging me. I love just listening to her heartbeat. He spoke with Dallas dr and they decided they can't wait til Tuesday (delivery day!!!) to check her again so I will be back in Dallas for monitoring on Friday.
So thankful not to be in ambulance right now headed for Dallas!

Can I just point out that the label "nonstress" test is the most ridiculous label in the world??? For over 2 hours today, I was hooked up to that machine and it was actually quite stressful as I wondered if Ellie would pass. UGH - who named it that?!?!?

Today was rough. Ellie has always passed her BPP - even at the last minute. Today, she just never did her breathing exercises. The doctor pointed out that babies' breathing is sporadic in the womb. They are just practicing - they don't actually need to breathe in there (there is not air.) So, it can be hit and miss on catching them. However, usually within a thirty minute time frame you ought to see some breathing. I turned every which way today and we poked and prodded and no such luck.

So, the stressful NST. The most we have ever kept Ellie on this monitor was for an hour. Not today. Two and a half hours nearly. She finally passed but we had to feed & buzz her.

Oh how I love this precious babe. And how she is stressing her mama out!

I have read that allowing siblings to express themselves, to talk about emotions and the tension of having a medically fragile sibling can be very important for their ability to process. This morning, prior to my appointment, Will told his Lovie & I that it makes him scared when Mommy has to walk away. (This breaks my heart as I worry about the next several weeks.)

I have read that some kids respond to art therapy as a means of expression. Will doesn't sit still very long for arts and crafts - pretend play is more of an outlet for him. Tonight, he wanted his doctor kit and he climbed onto my bed for story time and proceeded to be Dr. Will. I was a "mommy with a little boy and a baby girl." (Hmmm - sounds familiar.) He then checked Ellie in the Belly. He checked her heartbeat (even made beating sounds - he has heard her heartbeat a lot thanks to my home doppler.) Heartbeat good. He checked her blood pressure - a little high apparently. He gave her shots but reassured her it was medicine and it wouldn't hurt. He sat on my legs at one point - something no doctor has ever done. He checked her ears. He got a little frustrated with her when trying to check her temperature - she wasn't moving her arm very well apparently for him to get the thermometer in her armpit. This was a good opportunity to remind him that her arms don't work as well as his right now so that might be hard for her. He got Nurse Lovie at one point to help him as they had a "sick baby." And he kissed her and told her he was a really nice doctor and wasn't going to hurt her. And then he said she was fine.

And my heart got a little heavier. I'm glad he plays already with her - even though she is in the belly. And I'm thankful he can express himself through play -it gives me the opportunity to discuss things with him and feel him out.

But days like today are hard and long and stressful and emotionally draining.

Less than a week and she will be here. It's surreal to me. I long to meet her and hold her but I dread the unknowns. I am so thankful she has made it to term. I am so sad that our time with her so close to me is nearly over.

Ellie in the Belly - 36 weeks

Today's doctor appointments went good - although exhausting! I'm always so tired after a long day of doctors! Thankfully, a Dallas friend & former college roommate kept Will so he had a blast (& we didn't have to manage him through my appointments.) Thanks, Laura!!!
And my mom came to town to drive R & I around - so we could avoid dealing with parking and also because, despite the fact that I assured my parents I am an official grown-up now that I am 30 (yikes!), they didn't want me driving alone on the interstate this afternoon after such a grueling day. Thanks, Mom!

Cardiology - Ellie's cardiologist is feeling good about her heart. There are still masses present although they appear smaller & more "dispersed" - with no visible pattern. They continue to not be affecting structure or function of the heart & therefore do not present any problem. She said that she may never be able to explain them to us - it may just be something we always keep an eye on to make sure they don't suddenly grow or cause any problems. About 24-48 hours post birth, Ellie will have an EKG done with this cardiologist to check her electrical pathways. These can not be tested prenatally and we have to wait at least 24 hours post birth as she will reflect mine for awhile. Good appointment. No real changes from the previous echo and her heart remains strong - despite those mysterious masses.

Perinatologist - This wasn't a measurement/numbers ultrasound as we did one last week - it was just a high -level ultrasound. No real changes since last week. Ellie remains head down, face down (good for delivery) & we didn't try to get her to turn over to get a glimpse of her face as we want her in her current position. Her trunk was moving lots & she did good breathing practices. She did give us a scare of ogliohydramnios (too little amniotic fluid - very dangerous) - but Dr. M. decided to re-measure the fluid levels when she moved & then they came out at 10.3! (Normal is 10-20 so we are right at the normal mark - barely- whew!)
Ellie measured approx 7 lbs but, of course, there is a lot of room for error here - last Thursday she measured 5 lbs, 10 oz - I doubt she grew a pound and a half in just 5 days! She's probably somewhere in the middle there!
She still has lots of hair. Which is good because the girl has her own accessory bag packed with hair clips! :)
It's hard to get a good picture of a baby at this point in a pregnancy - the baby is too big and there is too little room ... so we saw what we could but could not get any idea really of limb flexibility.

OB- We used Dr. G. to deliver Will & LOVED him. He is also going to deliver Ellie so it was so fun to see him again nearly 3 years later. We completely trust him & respect him & feel confident putting our baby in his care. No, ahem, progress, for me yet but he gave me hope.
I am now measuring 33 cm for the fundal height. This is good as I was kind of stuck at 31 for so long! Technically, it's supposed to reflect the number of weeks pregnant one is (36 in my case) but, it's close enough plus we are getting far more accurate testing done weekly (ultrasounds plus NST plus BPP every single week) so we don't really go by the tape measure test.
I still haven't gained any weight now in about 4 weeks - wow - that's a first! (With Will, i gained alot!)
But, Ellie is growing so that is good.
We set the delivery date for Tuesday, August 17th. (Of course, Ellie doesn't have a calendar and she may try to come earlier - in which case, we have a plan - which is why I am not allowed more than 1.5 hours away from Dallas!)
He encouraged me in that he felt like Ellie's birth would likely be even faster than Will's - Will's was 7 hours!
(So, I am praying Ellie doesn't send me into labor early as I do not want to be on the interstate or in a helicopter in labor!!!)
It seems that all of our doctors feel like Ellie can handle a natural birth so we are hoping to avoid c-section. We are choosing to trust our doctors and based on the fact that Ellie's trunk & head shows so much movement, they do not feel that she is presenting in the typical fashion of babies with her tendon issue and therefore they do not believe she is at risk for breaking bones. They feel that for respiratory purposes for her, natural is ideal. Of course, they agree with us that we want what is best for Ellie and my "birth plan" can be thrown out the window should anyone at any point feel that she needs a c-section.

Should we change our minds in the next week about waiting to deliver at exactly 38 weeks, we will have to have an amnio to determine if Ellie's lungs are mature enough for early delivery. There is a slight risk with an amnio this far along that it would induce labor anyway. We currently have an appointment for one just in case set for Monday. However, all of our doctors feel that one extra week will not affect the severity of Ellie's tendons but will help her lungs and growth - & therefore help her fight the battle at birth.
We are trusting our doctors, therefore, and barring any incredible new research finds in the next few days, sticking with the 38 weeks plan.

I will continue to get NST and BPP monitoring in my parents' town - where Will & I are hanging out until just before delivery.

All of our doctors are so compassionate and we feel like they will do their absolute best to take care of Ellie while providing us with as ideal as possible birth environment. We gave our OB our "wishes" & preferences for Ellie's birth. I'm pretty flexible at this point as to doing whatever is best for Ellie - & therefore whatever our doctors recommend as far as an epidural, etc, so I am not going to get heartset on the birth going any set way. I need to be able to think clearly to make decisions and do not want to be so exhausted or too drugged to make decisions or to enjoy and hold Ellie. Mostly, therefore, our birth plan focused not on the labor part of the experience but on our intentions that R accompany Ellie for any testing, that we would like a chance to hold her and introduce Will & her grandparents to her prior to evaluations if she is stable, our expectations that both of our children's conditions be communicated to anyone who enters our room so that they treat them with sensitivity and celebration of life, and, if Ellie is at any point deemed terminal, what our wishes are for that scenario.

For the first time, I think I am getting excited about her actual birth! Having a birthday set forces me to accept the reality that I can't keep her within forever - and I'm kind of getting excited about holding her and dressing her and fixing her hair and singing to her and feeding her... and especially about introducing her as "Caroline Ellie Ellie Grace" to Sweet Will.
I am dreading sending her away for testing but am trying not to think too much about that...today. She will likely require an MRI or CT to determine if her Central Nervous System is affected along with an echo, EKG, & possible EEG. And then there's all the orthopedic stuff.
I am also waging war against the fearful thoughts of "what if"... as in, what if we chose a date today which our daughter might not survive. I am refusing to give into those fearful thoughts today.

R made fun of me for typing it into my calendar - as if I might forget what day I'm supposed to be at the hospital to give birth!
I just liked the looks of it in print - August 17, 2010.
13 days before Will's 3rd birthday.
14 days before her due date.
Ellie's birthday.

For now, I'm just dreaming about meeting her for those magical first few minutes of euphoria. There's nothing like seeing your baby for the first time, is there?

Ellie in the Belly Update - 35 weeks

I had my final "numbers" ultrasound today & local NST & BPP.

We leave Monday for Dallas!!! Oh my goodness, I am so NOT ready to have this baby (mostly because I like keeping her with me at all times & I'm terrified of all the testing, etc she will be going through at birth - things feel so "stable" right now as long as I can keep her with me - ha ha ha.)

Anyway, here's the weekly update:

Numbers: Ellie measured 5 lbs, 10 oz (give or take 13oz) Last Friday, during my regular ob checkup, we noticed that I had apparently not grown since mid-June. (As of today, I've lost a few pounds in the last 3 weeks too.) Anyway, I have been nervous since Friday that if my uterus was not growing, perhaps that meant Ellie was not growing either.

Thankfully, today's ultrasound revealed that she has grown! Praise God.

And that means I can just be happy about the weight loss. It's the little things. :)

She is head down, face down -so that's good. Still unclear as to whether or not we should do a c-section for her so we will really lean on our 3 doctors we are meeting with in Dallas in a few days for their wisdom and discernment. I'm also continuing to pore through my medical textbook for insight.

She wouldn't let us look at her face but she did give me lots of glimpses of that long, flowing hair. :)

We couldn't really check out her limbs & joints - too crowded in there- so a lot is uncertain at this point as far as the severity of her joint contractures and her flexibility.

My amniotic fluid level has dropped - again - to 10.2. Normal is anywhere from 10-20 so I am at the bottom of the normal levels now. (Apparently, for 35 weeks ga, that is equivalent to 22% and since we will be delivering soon (yikes!), it's okay for now.)

Her organs looked good - it was hard to tell if there are still masses or not in her liver and her heart looked clear but we see a cardiologist for an echo in Dallas in a few days so I'm holding out for her opinion as well as our Dallas perinatologist for his opinion on her organs. (I didn't see my regular doctor today and the guy I saw was still rather vague.) We also couldn't get the right angle to check on her cysts.

I did decide today that though I love watching her, I really do long to hold her & see her in full color - instead of grainy ultrasound! (Except that I'm scared of what is to come but more on that later.)

NST- After about 20 minutes on the non-stress test monitor, the nurse came in & squealed. She said she was so "impressed and proud" of Ellie! It was the best Ellie had ever done. Of course, when she went to locate the doctor, Ellie's heart rate decreased in a big dip. So, when the nurse saw that, they had to then leave me hooked up longer to make sure Ells didn't do that again. Stinker. Thankfully, it was a one time thing & I was cleared to leave.

We head to Dallas next Monday & I will see our ob, perinatologist, & cardiologist there. I don't know if we will meet the rest of Ellie's "care team" prior to the delivery (There's about 8 specialists plus a chaplain & counselor on the care team.) They will set her delivery date in Dallas after checking her on Tuesday. I anticipate it occurring the week of Aug. 9!

Party for Ellie!

Recently, some friends (16!!!) decided to throw Ellie and I a baby shower. They pulled their creative geniuses together and created a beautiful party. Bless their hearts - sweet Ellie has given us so many scares about coming early that it must have been a difficult shower to plan. She isn't exactly the most predictable shower honoree!

They thought of so many details. Everything was absolutely perfect and I felt so loved.

The invitations were incredible! Some of my friends handmade them (& should sell them on Etsy!!!) They were absolutely beautiful but I forgot to take a picture of the other side - which is glued down in Ellie's book. I'll find one later after Will wakes up to post a picture of. They are beautiful and I love the Maya Angelou quote they found. Perfect!

Some of the hostesses

(there were 16 total - have I mentioned how loved I felt?!?)

bumping bellies

monogrammed pink does something to me

precious pink clothes... ruffles, bows, accessories - oh my goodness

the smocking... love it

lots of friends

Ellie's grandmothers...

I think they are enjoying all the pink too!

Ellie will be one well dressed little baby!

This precious baby girl has been so covered in prayer. Is there anything more incredible than knowing your child is being prayed for? My tears were definitely flowing - I am so thankful to be surrounded by women who pray for my baby.

Ellie's gifts lined the hallway & the coffee table!

A friend painted her verse on this beautiful canvas

One of the hostesses made this beautiful cake... it was delicious

Everything was absolutely beautiful! They served with china and crystal. It was so delicate and feminine. Just perfect!

The food was delicious & beautiful!

My friends are some wonderful cooks and they really went all out for Ell's party. Yum! It was just delicious and I can't even tell you how beautiful it was. Little cheese puff pastries, corn/pineapple/mango salsa, bruschetta, green bean bundles wrapped in bacon and roasted, vegetables and dips, colorful fruit, yummy apple cinnamon creations, tarts, a carved watermelon, I could just go on and on. In fact, I'm hungry just thinking about it all. I'm thankful to have such talented cooks for friends!

They served one of my favorite drinks - raspberry lemonade- with fresh mint sprigs & fresh raspberries in champagne glasses.

Oh, it was just gorgeous.

I'm surprised Southern Living didn't show up for a tasting!

So many details... everything was absolutely beautiful and perfect!

Thank you, dear friends, for celebrating Ellie's life with me. Thank you for throwing her an incredible first party! Thank you for the oh so beautiful gowns, onesies, hairbows, dresses, the room decorations and hospital decorations, the so necessary practical items like diapers, sound machines, bottles, and the oh so fun sunglasses, purse, etc! We are so blessed! Thank you for making me laugh, praying me through my tears and fears, and investing in our daughter.

Thank you for loving her and walking beside me.

Thank you for honoring us both with such a beautiful baby shower and for creating such a wonderful memory for me of this pregnancy.

I packed up Ellie yesterday after washing her teeny tiny dresses in Dreft. Oh, how I love that smell! As we anticipate being out of town with Ellie for her treatments for at least 8-12 weeks, I packed a hospital bag, a 56 qt crate, and a blanket bag. She is ready!

(The girl even has her own collection of hair accessories and jewelry- all packed in her own accessory bag! Too fun!!!)

It feels so good to dream about her! This may sound really silly unless you've ever been the mommy of a baby who is medically fragile but there is something about being able to change and dress my baby that feels like I am taking care of her. I recognize that there will likely be several issues for Ellie that I can not "fix" or take care of for her. I can hold her when she is in pain and crying (I hope) but I might not be able to change her health circumstances.

I can, however, hold her, kiss her all over, comb her long hair, and dress her in beautiful clothes. Therefore, the girl has several bags packed as I intend to "take care of her" to the best of my ability.

I've also packed a box of "Ellie's hospital decorations" for her NICU crib and hospital room. I want her name known & I will create a space for my daughter - full of pink!

Ellie in the Belly Update - 34 weeks

Another good week for sweet Ellie. She passed her NST yesterday (non stress test - ha!) in about 30 minutes - a record time for Ellie! She only needed one buzz to get her going which was good.

(And I chugged a coke early this time to help speed up the process which maybe helped.)

She passed her breathing exercises and BPP (bio-physical profile.)

Her amniotic fluid levels are rising again - but still in the normal range (just in the high norm now) Hopefully, they'll stay in the normal range & not continue rising back up to the polyhydramnios level.

I will have a big ultrasound ("numbers") next week to determine her size, check her organs & masses, etc.

And then we're off to deliver this precious girl!

Thank you for your continued prayers!

My regular perinatologist will be out next week so I'll see his partner. This was my final time with Dr. B. He has cared for both Will & Ellie in the belly. He gave me a big hug yesterday & told me he was "fairly confident" I will be able to bring Ellie home & to meet him someday.

I so hope so.

Wish it was a definitely confident but after some of the scares she's given all of us, I'll take what I can get!

Cooking with Will & Ellie

July 2010

Dear Ellie Girl,

I was thinking recently that perhaps I ought to teach you about cooking. The problem is that I haven't been too interested in cooking recently.

However, thanks to you, I have been craving slushy drinks and lemonade. Thanks to your flowing locks, I get heartburn if I exceed my limit in lemonade. Your brother, on the other hand, has no limits for how much lemonade he can drink. He loves it!

Yesterday, we decided to make a slushy together from a recipe in his Highlights magazine. It has watermelon and raspberries in it. Your big brother, Will, ate the watermelon pieces I asked him to put in the blender. Fortunately, I was prepared for this possibility with extra fruit!

I also thought that I should perhaps teach you how to make your Daddy's favorite cookies: chocolate chip oatmeal raisin. I pray that someday you will be able to cook for your husband.

For now, though, we'll cook for Daddy. Thankfully, Will didn't find it too odd that I speak to you while we are cooking to tell you what we are doing. Perhaps that is because he talks to you all day long too!

He loves chocolate chips and raisins and ate them out of the bowl just as quick as I could put them in!

I love you, my sweet Ellie girl, & enjoy teaching you girly things!

Love,

Mommy

This is the best I could do at getting a picture of Ellie in the Belly cooking

Kitchen power tools are fun!

Ellie in the Belly Update- 33 weeks

My regular perinatologist is out of town so I had a new doctor today. I took my 400 page textbook with me hoping to harass pick the brain of someone new. However, he was quite vague & brief - I suppose out of respect for the fact that I am not his official patient & so he didn't want to give me his own conclusions, assumptions, diagnoses, etc.

Therefore, I will be brief (shocking, I know.)

Non-stress test: Ellie passed it at about 45 minutes in. Yay!

Bio-physical profile (BPP): She passed - yahoo!

She is not in a good birthing position at all - her head is very far up on my right side - literally - it is off to the side a little - & her body curves down and then her feet are near her head but on my left side & a little lower than a head. A "u" shape, I guess. This might make our c-section decision for us. We've been debating it with the doctors - it is recommended in our textbook and by other parents for Ellie... our doctors don't always agree. She might not give us a choice in the matter.

Amniotic Fluid: has gone way, way, way down to "normal!" Praise the Lord! In fact, it's actually now almost at the bottom end of the normal range. Crazy. There can be serious complications if it continues to go down so hopefully it will camp out & stay put. I tried to get the doctor to give me more information on this sudden decrease but did I mention he was vague? Basically, he said that for this week, I do not have polyhydramnios. We'll see for next week. The lower fluid levels also make it more difficult for Els to get back into birthing position - the high levels helped her move out of it last week and then when they went down, it makes it difficult for her to get back in place!

Ok - that's it for now.

Hilarious (in my totally unbiased opinion) video of Will coming soon reenacting David & Goliath.

Thank you for your continued prayers and support of our family! We appreciate you more than you know!

Ellie in the Belly Update- 31 weeks

I had another ultrasound today - a biophysical profile (BPP) & my first ever non-stress test (NST.)

A non-stress test is a misnomer - it's so named because it is non-invasive & so doesn't cause any stress on the baby or mother (supposedly.) It definitely made me more stressed.

BPP- Ellie took a while to pass her breathing tests once again today. She finally passed but with "shallow" breaths. They said that some babies take deep breaths & others take shallow so it's no big deal. I, however, worry that it is an indicator of respiratory issues to come - a common complication for babies with her tendon issue.

Also, my fluid levels are up. Normal fluid levels fall between 10-20 cm. Last week, mine were at 18. Today, they were at 20.25. I guess there is a small "grace window" as the doctor is not concerned yet. If it continues to rise, he will label it polyhydraminos at 22/23 cm. So, we'll see what happens next week. The major concerns are: early labor as it tells my body that I am further along than I am, possible complications for birth (me), and, most importantly, might be an indicator that Ellie is not swallowing adequately. Swallowing issues are quite common in babies with her tendon issue. Sometimes, these are fatal. Sometimes, it means that the baby/child will require a G-tube for feedings. Again, right now we just don't know - just some things to watch. There's nothing that can be done prenatally for either of these issues but the information would help us in determining birth plan & most critical issues to be immediately addressed.

Then we did the NST. Ellie didn't pass. It's supposed to be a 15 minute test in which they monitor contractions (I'm not having any) & also the baby's heart rate increases. The goal is to see two, fifteen second heart rate increases within a 15 minute time period. Ellie was pretty still - as she often is. So, after she didn't pass the first one on her own, they buzzed her with a little buzzer on my belly (they call it the "baby taser" - doesn't hurt her... just to wake her up or annoy her - to force her to react.) She did react - once. And then she was quiet again. So they tried again - basically they could get one heart rate increase per buzz... but not the necessary two in 15 minutes. Finally, the doctor dismissed me and they were not terribly concerned. They are assuming this is because we are only 31 weeks - they said results should be better at 32 weeks. I assume that if she continues to not pass, they might consider earlier delivery but I'm not sure - obviously that comes with concerns as well. It's just a big balancing act as far as when to deliver & how (c-section vs natural) - There are risks with preemies & for, Ellie, there are risks in leaving her in too long. There are risks with each method of delivery so we will really lean on our doctors in Dallas on Aug 3 for that decision.

R mentioned that this was not a great way to start our 8th year of marriage. No bad news, really, but not really great news either.

I met with the genetic counselor once again to discuss some things I have been researching. I mentioned to her that I read recently that a better name for her would be "grief counselor." Goodness, she is so wonderful at her job - such a wealth of information and medical knowledge yet so good in presenting it to me, helping me make decisions, helping me work through emotions, etc.

She did rule out a possible neurological muscle disorder (often fatal) I had wondered about so that was good.

It's wait & see for Ellie. We'll just see how she does next week with her tests. And my heart goes on hold, once again.

Everything else looks great - organs, masses are minimal if at all present - it seems that the organs have continued to grow good so perhaps they have just outgrown their various masses. Some masses have altogether disappeared thankfully. I don't know about her growth this week - we'll check that again at 35 weeks.

She does have looong hair! It was waving around & was the first thing the ultrasound tech commented on! Apparently it's on the back & top of her head! I told her it was a good thing as I've already packed precious little hair clips in her hospital bag! :)

As I've continued to research (& have downloaded & begun reading my first medical text book - an entire textbook on her tendon issue exists for $400 hardcopy or free PDF- R is printing it out for me to put in a notebook so I can highlight & take notes for doctors.) Anyway, I've recently learned that it can help Ellie's muscles & tendons actually for me to drink up to 3 cups of coffee/caffeniated beverages a day! I've bought some coca-cola & am throughly enjoying that freedom - although I can't quite get to 3 a day! I'm tempted to make a copy of those doctor's tips to take with me in public should I get bad looks! The book also recommends exercising, which I've been trying to do (around our travel schedule, Will's therapy schedule, & my doctors' appointments). It's nice to think that there are some minor things I can do that might help her just a little. I don't know how much these things actually help but it makes me feel more proactive.

Thank you for continuing to lift up our Ellie in your prayers! Please pray that the fluid levels decrease some, that her heart rate increases pick up some in reaction to life, & that we are able to make good decisions for her birth & treatments.

Ellie in the Bely Update (30 weeks) & Will's Toothache Plus My Heartache

That's a long title.

It's a 2 part post.

I'm tired & want a quick nap before I get busy doing everything that "must be done during naptime!"

Ellie in the Belly - 30 weeks

Another good week for sweet Ellie. She is measuring 31 weeks!!! I am 30 weeks, 1 day so that is great news. The doctor shared that one is his concerns for her is that she will stop growing or become growth restricted. I didn't know this was a concern. He was glad to see her measuring big! She weighs 3 lbs, 10 oz! This seems like such a good, healthy size to me.

Her eyes were open lots & her hair is quite long - kind of waving on the top actually. So fun to watch & imagine putting hair clips in. (I already have several packed in her hospital bag!) Hopefully, she'll be more tolerant of me fixing her hair than her brother is. Also, hopefully, she'll get his curls.

No swelling evident this week & fluid levels looked good. My fluid levels are on the high side of normal and we are continuing to monitor the fluid as it can be an indication of an inability for her to swallow - which is always a concern related to some of her issues.

Her bowels do not indicate masses at this time but look like there is a possibility that some may be forming - but not enough evidence to label them at this point.

Next week, along with the weekly ultrasounds, he will start me on some sort of heart monitor (stress test maybe?)

We discussed delivery options as I have been researching this a lot. I keep reading about babies with some similar issues as Ellie who have to be delivered via c-section due to the risk of breaking bones in a natural birth. I brought this up to the doctor today but he feels there are lots of risks with c-sections as well - even when the doctor does a bigger incision. Ellie is not presenting like the typical baby with her condition so she may not require c-section. He feels like this is a decision to be made Aug 3 by my delivering OB & Dallas perinatologist.

I have also been concerned about respiratory issues that I have researched but he informed me we can't test for these prenatally so I'm going to be trying to find a pediatric pulmonologist to add to her care team at birth. (Is that even a speciality or am I making that up?)

Just to be sure, my ditzy preggo brain asked if there were any alternative methods for delivery apart from c-section & natural - since both carry risks for Ellie. He informed me there are not. My husband made fun of me for asking. I admit, my brain cells aren't functioning at full capacity. R always says when I am pregnant that our children will be so smart because all my brain cells migrate south to build babies (& leave me asking dumb questions.)

All in all, Ellie is stable this week & we are continuing to watch for various possibilities and concerns.

Will -

Yesterday, the cutest thing happened & my heart nearly exploded. He brings immeasurable joy and laughter to our home & lives! At the grocery store, Mr. Never Met a Stranger struck up a conversation with the cowboy in front of us in the line. They had quite a conversation and as we were later loading our car, the cowboy found us in the parking lot & gave Will a real life horseshoe - which now goes everywhere with us! Will the Flirt also managed to wrap three older women around his little bitty finger. Again, as I was putting my groceries on the conveyor belt, he began to flirt shamelessly with the women behind me. He then began to sing, loudly, "Row Row Row Your Boat" & other nursery rhyme songs. He carried on quite the conversation with them - telling them about his baby sister, Ellie, & that he is 2 but going to be 3 on his birthday, etc. Then, as we were headed out, I said to tell them bye. He yelled, "Bye!" & proceeded to blow kisses.

Have I mentioned that he has never met a stranger in his life & is rather extroverted?

This afternoon, we went to grab lunch with some friends at Chick Fil A & Will was playing with the other kids on the play equipment. I visited with my friend & even had some laughs about what people will say when I am out in public someday, trying to grocery shop, with a kid in prosthetics & a baby in casts. My dear friend, who gives me the grace to be me, laughed with me & then also offered to go grocery shopping for me for awhile so I don't have to deal with that! Then, Will was injured. His mouth (3rd mouth injury in a week!) was really bleeding & I think his front tooth may have had it - it's rather loose, I think. I asked him as he began to calm down what happened and he said that "a girl and a kid were looking at my feet." He told me they tried to grab his shorts and that he tripped and hurt his mouth. I glanced in the room, ready to fight someone or at least talk to their parent, but they were gone. I had to control my tongue - I wanted to tell Will Mommy would "get them" or hurt them... but with every ounce of parenting self-control in me, I restrained myself from making out loud physical threats about people under the age of 10.

When we got home, I put Will down for his nap & crawled beside him for cuddle time. As we lay there (in the dark thankfully as I couldn't stop my tears), I told him he has permission to say, "please stop looking at me." And, if they don't, he can come get Mommy. He had some ideas about sharks and lions getting them but I told him I was like a Mommy lion & would take care of my son and make sure they stop.

I don't know what the proper response to teach him is - any ideas?

I know I am supposed to let him go & let him learn but it is sometimes so hard for me. Just when I think I'm being "normal" & letting him play without his mommy hovering nearby, ready to jump in to rescue him, something happens like this. With older kids, he's not always big enough to respond - or they don't take him seriously.

This is the first time he has expressed an awareness of people staring at him because he is different. It breaks my heart as it feels like another bit of innocence is gone.

How in the world will I manage this with 2 children?

Cinderellie

June 17, 2010

My Sweet (Cinder)ellie-

Tonight, we watched a girly Disney movie together! When our doctor first suggested nearly 3 months ago that I enjoying you now while I have you & that I put forth the effort to do special activities together, one of my first thoughts was that we needed to watch Cinderella together. I hadn't been able to locate it as it is in Disney's "vault" (someday I hope to explain this weird Disney mystery to you!) And then, this week, a friend loaned me a copy as a surprise so we could have a mother/daughter date!

First we watched it on the big television with your big brother. (He reminded me that you couldn't see it yet -just hear it.) Then, after he went to bed, I put it on the portable dvd player with the headphones on you - Ellie in my Belly. I wanted to make sure you could hear it!

We stayed up pretty late but I think you enjoyed it as you did lots of somersaults!

I love you, sweet girl, & I hope we get to watch every Disney princess movie together someday!

Love,

Mommy