Gracie Belle

The Funeral Part Two

2012-03-02T13:34:00.000-08:00

I'm not going to lie. I've put this off.

Sometimes the days are easier when I don't relive things. Sometimes I can't control it, out of the blue a heart wrenching horrific memory will assault my mind and I can see everything with excruciating detail causing me to lose it. But sometimes I can, for example the blog.

I don't want too much time to pass though because I want to remember.

So. Funeral Day.

I wore pink. And I carried her blanket. When they took her away at the hospital I clutched onto that blanket like it was the only thing keeping me tied to this Earth. I clutched it for days. I slept with it, ate with it, basically all but showered with it. I still sleep with it but I suppose that will pass in time too. Just not yet.

We went to the funeral home. I was apprehensive. We went into the foyer and off the foyer were all these double doors. We were pointed to our doors and went inside. And there she was. Laying peacefully in a cradle. She could have been sleeping. I ran to her and held her and sobbed.

We prepared her coffin. Her sweet little coffin my dad made. It was perfect. We filled the bottom with rose petals. There was a little white pillow for her head. It was as lovely as it could be.

I don't think I can write much more about that. It was a deeply personal and sacred time. I think this picture pretty much sums it up.

Kendall and I had to part ways before the funeral. He had to go home and pick up some of his family members and I needed to stop at the pharmacy first so I went with my mom.

The time for the funeral was getting closer and closer and I started feeling more and more nervous. I didn't want to be there. I didn't want to go in and have everyone stare at me and look sad and say they were sorry. So I told my mom I wasn't going.

I wasn't.

Let me just pause a second to express my gratitude for my parents. For everything they have done for me. Without them I would be....I don't have words.

But my mom. She is my best friend and often times a second self closely aligned with my thoughts and needs. She just anticipates--me.

Anyway. She turned to me in the car and said, "You need to put on your big girls pants and go. Gracie would want you there. You go, you bear it and then you can go home and fall to pieces. But you go."

I felt like a little child again. She was right. So I went.

But when I walked in the foyer and I saw people standing there I bolted for an empty classroom somehow grabbing my youngest sister by the arm as I went. She was like a shield. I pretended to be engrossed in a conversation with her until we closed the door.

I collapsed onto a chair and she sat down next to me. Now. She is ten years my younger and still in high school. Let's just say, her life experience is a little different than mine. But she was exactly what I needed. She said, "What do you need? Do you want a hug? Do you want me to tap dance? Because I can do that." (and she literally could because she had been practicing for her school musical)

I laughed and said no dancing was necessary and then we somehow got started on planning this amazing junk food fest for after the funeral. It was very very detailed involving a handful of establishments and carefully ordered food and the creation of a junk food pyramid balancing the salts, and sweets, and sours. It distracted me and made me laugh a little.

And then my mom flung open the door saying "there you are. Everyone has been looking everywhere for you!"

I hadn't relized no one witnessed us going into the classroom but oh well. It's not like they would start without me.

We went to another classroom where all family members were and held a little prayer. My monkeys and the other cousins were running around laughing and screaming and everyone kept telling them to be quiet and tried to restrain them but I liked it. I imagine that if Gracie was with them she would be doing the same thing

Now. This what I think about funerals. It's like a wedding except there is no honeymoon at the end. I had expected there to be my family and maybe a handful of others. But I was wrong. The entire chapel was packed. I was not prepared. I suddenly felt self conscious and emotional. I don't even know who was there really because all I could do was stare at the ground as we walked the long aisle to the front.

The service really was lovely. We sang an opening hymn and then Kendall's dad offered a prayer.

And then....Kendall spoke. When Kendall had said he wanted to speak I thought he was crazy. I knew that if I had tried to speak I probably would have sobbed until I blacked and out and they would have had to carry me out of there. But he did. And he did it with grace.

He wore a hot pink tie. If any of you know my husband, you know this is highly irregular. The only reason he possesed a hot pink tie was that he was forced to wear it for one of his brother's weddings. He is just not a pink guy and definitely not a softie.

But oh, Gracie Belle. She was only with us for a matter of moments really and he will eternally be wrapped around her little finger. He wore that pink tie with pride for his little girl. It was all his idea. I love that man.

He somehow managed to speak and then a family friend, Eric sang a beautiful arrangement of 'Silent Night'. My dad accompanied on the piano. I found out after the fact that they were very very nervous about the performance because they had never made it through the song without mistakes or without breaking down once. Not ONCE. But I believe the Lord strengthened them because they performed it PERFECTLY. I am almost certain not one eye was dry afterwards.

Then our stake president, President Riding spoke. I have known him since I was very young and he helped guide Kendall and I through this trying time and I just felt he would be perfect. And he was.

We had a closing hymn at which point my children were about to bounce off the walls and my father said the closing prayer.

I know this took forever for me to post and you to read but I do have more to say about the burial. HOWEVER. I will have to have a funeral part three because I am done for now.

Until then.

Watch your Pews

2012-02-20T14:24:00.000-08:00

I'm fine a lot of the time now. I go long stretches without crying or feeling overwhelmingly sad. I do miss her.
A lot.

But I feel a great peace about her and the knowledge that we will be together again someday.

I've been finding ways to keep busy though. Every door in my house needs to be painted so that's been SO fun. The monkeys are, of course, all consuming with peace treaties that need negotiating and the literal entire gallon, of spilled milk (the morning after I mopped the floor), to clean up. And at our house we DO sometimes cry over spilled milk.

This weekend my brother blessed his new little baby boy (born about 3 weeks before Gracie). I felt no apprehension about it. Seriously. None at all.

Sunday morning went something like this. I got up, the boys had colds so I was going by myself. I woke up a little late so I was rushed, James spilled an entire gallon of milk on the floor, tears ensued, stress levels rose, but I got out the door and on the road.

I arrived at the church about 20 minutes early. I searched for my family and my sister-n-laws family and couldn't find them so I went ahead and reserved two huge long pews towards the front. I felt so proud for being early and productive. I shooed people away looking for seats. I was saving them for MY family. WE were important. MY brother was blessing HIS baby today. I relished in the quiet and peace without my circus. And the time passed. And passed.

And finally it was five til so I texted my brother and said, "where are you? I have two rows saved!"

he texted me back and said "we're all here... where are you?"

At the wrong church apparently.

I was so embarrassed I grabbed all my things that were strewn across the two rows and ran out. It was fine it was just embarrassing.
*(my brother has decided to call this pew terrorism. He thinks we should show up at random churches, save a handful of prime pews and then abandon them right before the service starts. I think it could catch on, no?)

Anyway. I booked it to the correct church and got there barely in time. I was flustered. My brother got up to give the blessing. I tried to settle myself after rushing there. I bowed my head and closed my eyes and he started speaking and I started crying. Like serious crying.

Here's the thing. It wasn't like I could feel it coming. There was absolutely no warning. I wasn't apprehensive. I didn't feel the tears threatening to come. My throat didn't tighten up. NOTHING.

I was fine and a split second later I was not. Like a slap in the face.

I concealed myself the best I could and when he was done excused myself to use the restroom. I made it into the bathroom, into the stall, locked the door and lost my mind. I had to keep it quiet for the first few moments while a lady finished washing her hands and the second the door clicked I cried.

It's a fine balance because I am so so happy for my brother and their healthy little baby. He is darling and I love him. I love holding him. It fills the little hole in my arms.

But I guess, it's still hard. By the way I lost it, I apparently wasn't aware of just how fragile I still am but I guess I am.

Church is hard in general. Lots of little babies. Lots of people asking you how you are. You are close to the spirit and I think that makes your heart tender. It also didn't help that in that particular meeting a man got up and spoke about his new little baby girl born with a heart problem. He described watching the oxygen monitor, watching it decrease little by little and it just brought back such a flood of memories. Vivid vivid memories.

When I got home, I explained to Kendall how shocked I was that I went from zero to 160 emotionally and of course, as Kendall usually is, he wasn't surprised. He said that he thinks surviving something like this leaves physical wounds but also spiritual ones. And that I can see the physical ones and monitor the progress and see when I am healed, but the spiritual ones are little bit trickier. And someday, the spiritual ones will heal too, but there will always be a scar.

He's probably right.

I am Pariah.

2012-02-13T17:00:00.000-08:00

Or at least I feel like one. It's like I am in this semi-existence. Half-in, half-out. Wanting to resume business as usual but also not.

Harrison's Valentine's party was today. My attending it hadn't given me a second thought until I pulled up to the doors. This is a place where everyone knows what happened, but I don't really know anyone there. As if trying to make small talk isn't hard enough.

I considered not going and then I realized I had his Valentine's so I had no choice. I walked in and everyone said "Hi!" and I mean "HI!!!!!" Too much. They knew it. I knew it, but no one knew how to de-awkwardize the situation so they all fell into small groups of twos and threes and chatted.

I kind of went over to Harrison and hovered, attempted to jump into a conversation which came to a stop when I came over and I eventually wandered back to Harrison. I sat on his tiny little chair and made him sit on my lap.

He was like a human shield. I acted really engaged in what he was doing and saying. And then they pulled him out of the room to play some game. So I turned to one of his little friends and acted really engaged in what HE was doing and saying.

And I've come to realize that it is much easier for me to socialize with four and five year olds. I am starting to feel much better about my plan to teach preschool in the fall. One of the little girls who had previously been OBSESSED with the fact that I was pregnant came over and said, "Is the baby out of your tummy?" I said, "Yes." She looked me up and down and said, "Okay" and started talking about Rapunzel.

Now that's the kind of conversation I can handle.

I know I never posted part two of the Funeral but I am just not in..."that place", I guess. Right now, it feels better to keep things tucked away. I think I am in a place where I don't want to relive it over and over in my mind. But sometime I will be. I'm sure of that.

My friend and amazing photographer Toni Elmer (http://tonielmer.com/) sent me the rest of the pictures and I this is one that I love.

Signing out.

The Funeral Part One

2012-01-28T15:52:00.000-08:00

I think I will post about the funeral in two posts. This one will be mostly pictures and the next post will include pictures of the program and more my take on the day. So. This post=pictures Next post=words. Pick your poison.

Can I first just say how much I love these three little monkeys? They definitely keep me moving forward and keep laughter and love in our home.

Bennett at the hospital wearing the angry birds pig hat his Auntie Michelle made.

Sweet brother James

Harrison stealing a peek at Gracie

Above is a picture of me and my Gracie the morning that she passed after I had fallen into an exhausted sleep, and below is a picture of the sunrise that morning. Wasn't it beautiful? I think it was meant just for Gracie.

The day of the funeral Kendall and I went to the funeral home to prepare her casket and put her in.

We filled the casket my dad made with roses so she would have a soft sweet smelling place to lay.

This is me giving my baby girl one last squeeze before we laid her in. It was one of the hardest things I have ever done and probably will ever do, in my life.

The beautiful casket my dad made, at the church.

One of the table displays

The cemetery

James looking down into the hole Kendall and his brothers dug. Thank heaven for children because they truly keep the spirit close and bring light to dark times.

After examining her grave he turned around and said, "hey, where's my grave?" You never know what children are thinking.

Kendall and his brother Spencer carrying the casket

Putting the casket in

Kendall's brother Jason and me trying to coax Bennett into throwing his rose into the grave. He wasn't having any.

This was a picture that caught James patting his dad on the back.

The boys helping to fill the dirt back in. I love that they did this and could be a part of helping put their little sister to rest.

All of the men present helped shovel a little. I even did one (with Kendall's help since I was still so fresh from surgery.)

We tried to take a picture of the casket but you can't read it as well as you could in real life.

It says, "Gracie Belle Ray" and under that it reads, "Sleep in Heavenly Peace" It was amazing.

This was obviously pre-roses but we put a little picture of our family in the lid. And of course she would need some toys to occupy her. The Whinnie the Pooh was actually this little bell rattle and when ever we would shake it at the hospital she would quiet down. I truly believe she loved music and that it brought her great peace.

Funeral Part 2 coming soon...

The Almost Funeral

2012-01-25T15:47:00.000-08:00

Well I burned all of the pictures to a disc and was prepped to do the funeral post and.... I left the disc at my parent's. So. Instead. Because I was going to include it with the funeral post, I wanted to share someone else's beautiful way of writing.

"A ship sails and I stand watching til she fades on the horizon and someone at my side says, "she is gone."
Gone where? Gone from my sight, that is all; she is just as large as when I saw her. The diminished size and the total loss of sight is in me, not in her. And just at the moment when someone at my side says, "she is gone", there are others who are watching her coming, and other voices take up a glad shout, "There she comes!" and that is dying." -Bishop Charles Henry Brent
I thought it was beautiful anyway.

And to all the anonymous. I can't say thank you enough.

Bundt Cake and Setbacks

2012-01-22T09:24:00.000-08:00

My milk is gone today. Which is a relief but also makes me inexpressibly sad. As my stomach begins to fade and the milk dries, I find I just can't shake the feeling that all the little pieces of her are disappearing.

She was just like a shooting star, and then I blinked and she was gone. I keep all of the things she wore and touched at the hospital in a little memory box, inside a zip lock bag. Her little preemie sleeper smells so much like her and sometimes I feel like that's all I have left. Her sweet little smell.

The funny thing is, it isn't all that sweet. It mostly smells like the sterile pads they used on her back but for me, that has become the sweetest smell in all the world. Except for her hair. We washed her hair with lavender shampoo so I suppose her hair smelled the best.

This is the part where people usually chime in with heaven and how we will be with her again, and I know. I know, I know, I know, I know. But that doesn't mean I don't feel terribly sad sometimes.

I'm two weeks out and I find I'm still paralyzed. I am not good with human interaction. Crying is almost as natural as breathing to me. And sometimes it doesn't help when people who know about our situation tilt their heads and get that look in their eyes and say, "How ARE you?"

I'm fine. I'm well. I'm surviving.

It gets a little better every day. And I don't say this because I don't want people to ask how I am and talk to me, it's just hard I guess.

By now, you're probably wondering what Bundt Cakes is doing in the title of this post.

I went to pick up a cake as a thank you present for Kendall's law firm. (He goes back to work Monday) It had been a pretty good day. We went to my little sister's high school musical and out to dinner with my parents, (kid-less! It was nice and quiet and I actually got to eat).

We made a quick stop to pick up the cake. Kendall and I went in and called in our order. Then a lady came at us with free samples and said, "You are going to love this!" Then she proceeded to bend down to my stomach (which is clearly not as faded as I had supposed), and said, "You will too, little one!"

Kendall kind of froze and I just smiled and took the sample. We paid for our order and she said, "Congratulations, honey!"

"Oh, thanks," I said and we left.

I cried the whole way home. Like I said, it's just hard I guess.

*hopefully next post will be the funeral

A Pause

2012-01-20T15:18:00.000-08:00

It's been a week since the funeral and I was going to post about it today because it was really lovely and perfect, but I left the pictures at my mom's and so I think I will do it this weekend, instead.

I wanted to post instead about the countless blessings we have had during this time.

First of all, Kendall and I can't even really find the words to express how grateful we are for all of the donations to Gracie's account. Since we found out about her last year, up until her passing we have racked up literally thousands of dollars in debt. (Insurance? I say schminsurance. I swear it was with glee that the insurance company sent us our new statement for our new deductible this year.)
With just graduating from law school and trying to start up life again, we thought we were going to sink.

But I have tears in my eyes as I write that because of the generosity from family, friends, and sometimes complete strangers we will be able to cover much of our medical costs, the funeral costs (someone paid for it anonymously), and maybe even buy her a little headstone to replace the paper plaque we have now.

It is astounding and humbling to see how many people care and showed love for little Gracie.

It just leaves me speechless. Good thing I can still type.

Another aspect I wanted to write about is the amazing medical team at the hospital.

Our other hospital stays, while more routine because our babies were healthy, we have felt that we were mostly just tolerated by the nurses and hospital staff. When I would call for pills, or water, or whatever they would sound a little put out and often times I would have to call again after a while had passed.

With Gracie, it was a like a different planet. We delivered at the Texas Health Presbyterian Hospital in Flower Mound and let me tell the staff was amazing.

They put us in the biggest room they could muster and from that moment on we were more than taken care of. The director of labor and delivery, Nanette was amazing. She was like a mother to me. She loves photography and brought her camera and took over 200 pictures of the delivery and post delivery. I think she even assisted with the surgery in some way. I'm not sure how, but she was everywhere and everything all at once.

They kept us with the same nurses for my entire stay which was nice because I felt more stable that way. My day nurse, and night nurse were both named Jennifer, (which is so thoughtful that I didn't even have to think that hard to remember their names.;) They did whatever I needed, anticipated whatever I did not and tried to help me smile through the hard times.

My night Jennifer knew that when I asked for grape juice I really meant a giant cup of ice with just a teeny bit of grape juice thrown on. She could always make me laugh.

My day Jennifer was just so intuitive and kind. My mom told me a story that at one point in time she was so overwhelmed that she snuck away into an empty room to cry. She said she was crying so quietly but all of a sudden, my day Jennifer popped in and said, "I heard someone crying and I've been searching and searching!"

She sat with my mom and hugged her and soothed her.

The entire labor and delivery nursing staff made this amazing scrap book with all of the pictures of Gracie they had. It's beautiful and I look at it all the time. They brought food to my family in the waiting room and extra chairs.

They brought an entire other bed into my room and put it right by mine, stuffing pillows and blankets in between so that Kendall and I and Gracie could lay together in her final moments on this Earth.

Gracie's nurse Tanya was so calm and good with Gracie. (Though Gracie didn't like her very much. She was so irritated that Tanya would take her away to change her back pad or give her a feeding. Geez Tanya.) And then, when Gracie started struggling she stayed. Her shift ended and she stayed all through the night with us.

I'm sure I've lost many of you by now, but I wanted to remember all of the little things that meant so much to me and my family. There are so many ways in which we have been bolstered up from meals, to cards, to flowers, to gifts, service, and helping with the funeral and we just can't say thank you enough.

For what we were facing and what we have gone through, it was the best possible way we could have done it. Love you all.

My Little Gracie Girl

2012-01-14T08:37:00.000-08:00

It's the day after the funeral. I'm sitting here in bed and everything is quiet. In a way it is a relief to have everything over and in a way it is paralyzing.

It rained all night the night before I went to the hospital. I even took a sleeping pill but it didn't have much effect. My father-in-law drove us to the hospital and as soon as we pulled up I got out of the car and all but ran inside. I figured if I had enough momentum, if my legs gave out I would still end up inside the doors and they could figure out how to get me up to the third floor.

I got all hooked up and as they strapped my legs into these air pressure cuffs I had the distinct feeling I was being locked up so I couldn't make a run for it.

We had two hours to kill until the surgery so we watched The Addams Family and some cake decorating show. They served their purpose and distracted me until the doctor showed up. Then everything moved way too fast. It was all too fast.

They wheeled me to the OR and it was a blur of people telling me to do things and move places and they were about to insert the giant needle so I needed to curl my back and lean against the nurse. They told me to exhale and I did and as I exhaled the weight of it all came crashing down and I started sobbing.

The anesthesiologist kept asking me if everything was okay did it hurt. And I said no it didn't hurt. But it did. Everything hurt so much. If I didn't know better I would have thought my heart was going to explode.

My legs started going numb so they had me lay down. I didn't get sick this time like I did with Bennett. I just laid there shaking and crying. And everyone kept asking me if something was hurting and I kept saying no but it was. My entire being was hurting. This was the beginning of the end and it hurt like hell to know that.

I kept crying and my husband kept trying to wipe my tears but bless his heart he is such a boy and clearly does not know how to wipe tears when wearing mascara. I eventually swatted his hand away and just held it instead.

The entire room was expectant, like everyone and everything was holding its breath. The doctors were talking in low voices and I was shaking.

And then Kendall said, "There she is! There she is!" But I couldn't see her. "She is beautiful and she has dark curly hair!" he said. And I still couldn't see her.

She let out a little mew of a cry and the neonatal team whisked her over to a table to work on her. And all I could see was their backs. Just a bunch of scrub wearing backs. Kendall went to be with her and my mom came and sat by my head to keep me calm.

I couldn't see her, I couldn't see her. I just wanted to see her. She cried more and more. They had to wrap her back they said. Her legs were bent the wrong way they said but she was okay and breathing and beautiful.

And then all of a sudden they laid her on my chest. There she was. She was crying quietly but she was there and she was breathing and she was mine. I kissed her head over and over again and stroked her lovely hair. I've never had a baby with hair before all my boys have been bald and blonde.

She had a darling little button nose and perfect rosy lips. She was so soft. Her hands were perfect. She held my finger.

They tucked her inside my gown and she laid on my chest and slept. I think it calmed her a little to hear my heartbeat again.

They wheeled us back to our room and the hordes of family that loved her so much came filing in. Everyone got to see her and stroke her little curls but i wouldn't let anyone hold her. She belonged to me. she belonged with me.

The boys thought she was cute and looked at her for a moment and then they were off to play some game when she clearly wasn't going to do anything more impressive than sleep.

People eventually filed out and it was just Kendall and Gracie and me. Her breathing was a little strained so they put her on oxygen and they gave her a little feeding tube to see it eating would comfort her. It seemed to help. So I wrapped her up and we just slept and laid together the rest of the day.

In the middle of the night her back bandage started leaking the spinal fluid so they had to rewrap it. She seemed to be in pain so we eventually started giving her morphine and it made a huge difference. Her face finally relaxed and she seemed so much more content.

At 12:45 the next day she was officially 24 hours old. She had made it a whole day! We got her a little cupcake and sang her happy birthday. Her brothers blew out the candle. We were so proud of her. She hadn't opened her eyes yet though it wasn't for lack of trying. She would try her very hardest but we think she just didn't have the muscles to do it.

And then about 15 minutes after we blew out the candles she stopped breathing.

Everyone left the room except for Kendall and the nurses came in. We watched her little monitor for her oxygen levels and her heart rate. It began to slow. "What am I supposed to do?" I said. What was I supposed to do? How was I supposed to do this?

She turned purple and was quiet. We all held our breath watching this little darling. My little baby. And then she sputtered and I jumped. It scared me to death. But she was breathing again. It was labored breathing but she was breathing.

I held her close to me and cried and cried. This went on for 14 more hours. She would stop breathing and it would all start again.

It was the hardest thing I have ever done. It was horrible to watch her struggle. The worst part was when she would turn purple. I was useless. There was nothing I could do. I cried so much that my eye lids looked like they had been stung by bees. I literally could not see at one point and they brought me an ice pack for my face.

I wouldn't let anyone else hold her unless it was when I had to get up to go the bathroom. And the whole time I was in the bathroom I would ask Kendall, "Is she still breathing? Is she still breathing? Is she still breathing?"

But she always was. She was always waiting for me. Kendall gave her a blessing and in the blessing, he asked for her to open her eyes so we could see them just once. And shortly thereafter she did. Just the right one. She cracked it open and we could see her beautiful blue eye looking at us.

In the early hours of the morning Kendall and I started to fade. We had been up for 50 + hours. We would take turns sleeping and watching.

At 3 I was woken up. It was like someone had nudged me but Kendall was sleeping and no on else was there. Gracie was still there in my arms fighting to breathe. The room was quiet and dimly lit. She made some cooing noises. I nudged Kendall to wake up and he did but he couldn't stay awake. He was so, so exhausted. I stared at my little baby girl and kissed her on the forehead. She cracked her little eye at me and we stared at each other. Then she sighed this peaceful little sigh, and was gone.

She didn't turn purple this time or struggle. She just let out her perfect little breath and slipped away back to her Heavenly Father.

It was just me and Gracie, like it had been for that long nine months. I think she wanted that special moment to be between us and I will always be so, so grateful to have it. Me and my Gracie girl. Me and my baby.

Photos and Funeral

2012-01-11T20:47:00.000-08:00

Here are some photos, as promised, of Gracie's first day.

Also, Gracie Belle's funeral will be held at 2 pm on Friday, January 13, 2012. The service will be held at an LDS church located at 902 N. Chinn Chapel, Highland Village, TX, 75028. All are welcome to attend and join us in expressing thanks for Gracie Belle. After the funeral, family members will proceed to the burial and dedication nearby.

She has passed.

2012-01-11T08:02:00.000-08:00

Gracie Belle finally stopped fighting and is now sleeping in peace. Shortly after we celebrated her birthday yesterday (1 full day old), Gracie began to have episodes of difficult breathing that continued until she passed early this morning. We were told that her heart would steadily falter as the ductus arteriosus closed, but we were not prepared for the number of times we thought we lost her. In many of the early episodes, Gracie's head would turn blue (to me it looked more like purple) and stop breathing for about a minute or so. She was connected to a pulse oximeter, so we frequently checked the monitor for heart rate and saturation. Gracie's heart rate typically fluctuated between 130 and 160 when she was stable, with the saturation between 80 and 100. During the episodes, we'd typically see the numbers decline rapidly until no readings were showing. Then we would wait. Without fail, Gracie would surprise us with what initially sounded like a loud hiccup, followed by a few gasps until she would sort of stabilize with labored breaths. This process continued for 10+ hours. She certainly lived up to her reputation as a fighter, but it was terribly traumatic for her parents. As time passed, Gracie's "stable" numbers would decrease and her breathing became more labored. She stopped turning blue as the night became later, and her face was more at peace. We think some of the pain medication was helpful. The episodes were less jolting, but continued the same pattern, until she finally didn't come back.

As you can probably notice, this is not Emma, but instead you all are stuck with me today, Kendall. I apologize to those I did not communicate with previously about our little girl. At first, I just didn't know what to say or expect, and then I think I was paralyzed with inertia. Finding the right moment to discuss Gracie with friends was very difficult and my sympathy weight, while significant, was not noticeable enough to give anything away.

This whole experience has been difficult to process. We haven't posted pictures here yet (mostly because Emma is the most tech savvy), but Gracie was not your average Full Trisomy 9 baby. I still suspect she was mosaic, but she just looked beautiful to us. The spina bifida lesion was very large on her lower back and her legs grew the wrong way (folded forward into her chest), but her face was all we could hope for in a beautiful little girl. Gracie never fully opened her eyes, but we got a few treasured glances of her baby blues. We just couldn't find a way to fix her heart.

We're working out the details for funeral arrangements, and will provide updates as soon as possible. Thanks to so many for prayers and support. The doctors and nurses at Flower Mound Presby were amazing. They were/are more accomodating than we could have imagined. We've certainly witnessed many tender mercies from God during this difficult time. We love you all.

Kendall

Our Gracie Belle

2012-01-09T13:57:00.000-08:00

Gracie Belle Ray was born on a rainy, cold January 9th in 2012. 5 pounds, 9 oz, she is a beautiful little baby girl with masses of dark curly hair for Mommy to play with. We love her with all of our hearts and are making the most of our time with her. Thank you for your love and support and prayers. We have felt them and have been comforted by them in surprising and wonderful ways.

Stay tuned. Gracie Belle is a rough and tumble little girl with a sassy attitude. She will teach us all a thing or two! -Nana

Prep PS

2012-01-06T18:14:00.000-08:00

I did want to put on here, at the great risk of being tacky or improper, that in lieu of flowers we would greatly appreciate donations to her medical fund. It's either that or pounds of chocolate. You decide. ;)

*Disclaimer* We obviously do not expect anything from anyone. We are so humbled and grateful for all the prayers and thoughts, and hugs. I just wanted people to know what they can do to help because that seems to be one of the the most common questions I get.

Prep

2012-01-06T18:04:00.000-08:00

Two more days. It's pretty surreal. I spent the day with my mom cleaning, laundering, and doing all of this last minute stuff that just HAS to get done. I guess.

Yesterday, Kendall and I went to the hospital to meet people and see places. I held it together pretty well. Made it all the way to my car. It think the hardest part is that it just feels so close. Just one step in the other direction and we could be visiting the hospital with excitement instead of dread.

We met all of these nurses who were really nice. They showed us the room we would be in which was on the labor and delivery side instead of the recovery side so we don't have to be around all the babies. They put me in seriously the biggest hospital room I have ever seen. It will definitely come in handy if I need to do some cartwheels or something.

The nurses were nice. Don't remember their names or faces, but for some reason all the nurses kept telling me about how they have popsicles. And don't forget to bring my favorite snacks and Ipod, and robe, and books.

And I'm thinking. What exactly are they picturing me doing? Kicking back in my robe and slippers, playing Angry Birds on my Ipod while sucking down some popsicles and doritos?

Who knows. Maybe I will. I guess it will all depend on Gracie. Though I doubt if she passes quickly I'll feel like doing much of anything but sleeping.

They made it very clear that they would give me painkillers that would not make me sleepy so I could be alert and I said, "That's great. I do want to be alert but if she passes, seriously feel free to knock me out for a few days."

They all laughed tentatively and I said, "No, seriously."

Well I guess if they won't knock me out, at least there are popsicles.

Alliteration Appointment

2011-12-29T10:09:00.000-08:00

So delivery is scheduled for the ninth at noon. I was sitting there at my doctor's desk while he was on the phone with the hospital and he puts his hand over the mouthpiece and says "How about the ninth at noon?"

First I want to explain that at all of these many appointments it has been all I can do to only be halfway there. While doctors have been describing horrible procedueres or outcomes or facts, my husband listens intently and asks questions and I just nod but find myself staring out the window at a pair of hawks chasing each other through the city. Or as a doctor is talking to me I start wondering what type of eye shadow she has because I really like the color but she has much lighter skin so would it look as good on me?

It's either that or I have to pinch my arm to keep from crying. I switch back and forth. I have the bruises on my arm to prove it.

Anyway. Back to the story, my doctor covers the mouth piece and says, "the ninth at noon?"

The thoughts that go through my head are as follows:
- I like the way the n's sound together. 'N'inth at 'N'oon.
-My cell phone minutes roll over on the ninth which is kind of irrelevant because I ignore most phone calls these days.
-Doesn't it feel strange to be scheduling the death of your child? The ninth at noon? Sounds good. Let me just pencil it in my calendar.

Anyway. That's the plan unless Gracie Belle has her own plan.

We did have a good Christmas. The boys were so much fun. And we had our own little Christmas miracle for Gracie.

We (and when I say we, I mean my mom), has been tirelessly going to cemetaries to find a place for little Belles. No matter what day she went it always rained. Appropriately I guess. All of the cemeteries were too big, or too expensive, or on a busy busy road, or just wrong. And then we found this little cemetary close to us. It's really old and a little overgrown but on a hill on a quiet country road and it feels just like a cemetary should feel.

My mom inquired about it and the owner said the cemetary was full and he apologized but there was nothing to do about it.

He clearly didn't know my mom. She hand wrote him a letter explaining the situation and I kid you not said, "She is just a little thing, we promise she will be no trouble at all." Wasn't there a tiny little spot we could fit her in?

On Christmas Eve he called and said they found a little place for her with this really old family (1800's) who had five infants that died at birth and they could put her with them.

I know this might sound morbid but it truly was our Christmas miracle to have the peace that she would have a place to lay and not only that but she would have five little friends to be with.

My dad is building her a little coffin with her name engraved on it and beneath it is the phrase, "Sleep in Heavenly Peace". For Kendall and I "Silent Night" has kind of become her song and though we can't really sing it right now without tears it brings us peace and is more like a lullaby than anything.

The coffin is lined with the softest softest material and we are going to fill the bottom with pink rose heads so she can lay on a bed of roses.

I think we will have a little funeral at our church before, but the burial is probably just going to be immediate family.

Another interesting thing about the cemetary is you have the option to dig the grave yourself.
Kendall wants to. And while I thought it was odd at first, it is more meaningful now to be able to prepare a little place for her with his own hands and heart.

Thanks to everyone for prayers and kind notes and thoughts. Everyone has hard things and I appreciate those who take the time to think of us while we are going through one of ours.

Heart Follow Up

2011-12-15T18:22:00.000-08:00

Well we had the appointment with the other cardiac doctor and at this point things aren't good. She has developed hypoplastic or hyperplastic (I can't remember which way it is), left heart syndrome. (at least I think this is what the doctor said though honestly, it was pretty much a blur of words)

That is something that even in the healthiest of healthy kids with no other problems but that, people often still opt for comfort care (hospice), because the survival is just so low.

That being said, we are obviously heartbroken. I mean, it isn't anything new or something we weren't expecting, but it is somehow still shocking. It just feels heavier. More final.

She still might not even make it to term but if she does we should be delivering somewhere between Jan 5-9 at which point, we will just spend whatever time we have loving her and then give her back to her Father.

There is a certain amount of peace having some of the uncertainty wiped away but it isn't much of a consolation. It was liberating to cancel appointments with other doctors though. Maybe now we can enjoy the holidays a little more and just appreciate the time with her inside and the little time we have with her outside.

I'm sure I'll post again with more thoughts and things but I just wanted to let those who have cared and prayed and worried with us know.

Santa's Beard of Doom

2011-12-11T17:40:00.000-08:00

December is flying by isn't it? My boys have a Santa face minus the beard and each day that glue on a cotton ball so by Christmas he will have a beard. They love it.

As each day passes and we glue on cotton balls or rip links off our paper chain or turn our countdown blocks (yes we like counting down apparently) I am feeling more and more apprehensive because Christmas ending means Gracie coming and the end of the pregnancy and we all know what that means.

In some ways it will be a relief to be done, in others it is terrifying to think of.

Surprisingly and unsurprisingly we still have lots of doctor's appointments. This week we are actually getting a second cardiac opinion which I think will really (and hopefully) help us feel settled. The first cardiologist says it's open heart surgery or nothing which we know we don't want to do.

This other cardiologist says he isn't sure it needs to be open heart and we could possibly do a balloon procedure. (which is just up through the thigh). We will have a fetal echo just to see the heart. We've filled our deductible for this year so I guess I am just like what they hay? Bring on the "free" expensive procedures.

We are really just feeling our way through the dark. We are kind of an anomaly in that there are no other cases of live Trisomy 9 births to date other than the 80's. (which in medical world is like a million years ago). So any decisions we make or things we do are guesses at best. All of the doctors shrug their shoulders and scratch their heads.

It's all very reassuring.

Hope for the best. Plan for the worst. I guess that's where we are. What else is there to do?

2011-11-30T10:05:00.000-08:00

Gracie Belle is angry! Want to see why? Visit our old neglected blog for more pics. Click here.

Gracie's First Halloween

2011-11-09T17:04:00.000-08:00

So since this might be Gracie's only Halloween, I wanted to make the most of it. She carved her first pumpkin, wore a costume, and has effectively sampled every candy known to man, via me.

Me and Gracie and her butterfly pumpkin.

Me and Tigger and Gracie in her skeleton costume.

Puttering Around

2011-11-07T08:47:00.000-08:00

Don't have too much to update. Well anything really. She is still hanging in there and growing, still two weeks small but progressing. My c-section is tentatively scheduled for Jan 5th. Just in time to pay a brand new shiny deductible.
Maybe Gracie has great financial smarts and come five days earlier. ;)

I see an ultrasound of her about every two weeks and each time the ultrasound tech comes in first and does the ultrasound and then the doctor will come in and answer questions and check things out too.

I've developed a friendship with the tech and every time she comes in I ask her a BILLION questions and she is always like "the doctor can answer all of your questions in a minute". That's what she's supposed to say. And that's fine, the doctor's great and all, but things always sound better coming from her for some reason.

My strategy is if I bombard her with enough questions then she is bound to slip on one of them. And she does and she laughs and tells me to stop. But hey. If it works, it works.

One of the things to look for is essentially a clenched fist that is fused. Fused is not good. I asked the tech if her fist was fused and at that moment Gracie opened her fist like she was saying, "of course mom, i can open my fist, I'm just in fight fist mode." She's funny like that. And maybe it's crazy but I feel like she is way more conscious of what is going on and what I am saying and feeling, than anyone would give a baby credit for.

I feel very close to her these days. I feel her move all the time and I am just really trying to embrace it as our time together. Whenever she kicks I talk to her and it helps.

Miraculously, we don't have ANY doctor's appointment this week. Not one. That pretty much never happens so we are just kicking back in our pajamas, unpacking and enjoying Halloween candy. I think it's going to be a good week.

Exclamation Points

2011-10-18T20:04:00.001-07:00

I just re-read the last post and it seemed weird to me. Over analyzing? I probably am. I wrote, her growth is back on track and then put an exclamation point. And at the time the exclamation point just seemed so... odd.

I mean I guess it's--positive--, but sometimes I struggle with positivity. I mean I guess I am hopeful? But then I feel like hopeful for what?

I think I could definitively feel hopeful if, say, I was hoping for her to be healed and get better. But this in between, this half hope is awkward at best and devastating at worst.

It's just like, I feel hopeful that she is growing again so that she will what? Make it full term and then die?

I think the real problem here is the uncertainty. At the growth appointment what really happened was the doctor told me that we need to figure out a plan. If she survives to birth and is stable enough we have to decide whether or not we are going to begin the processes of surgeries... or not.

The obvious risk with the surgery is that she will not be strong enough and die on the table. Which I HATE. I know that I do not want her to die all alone like that. But if we don't do the surgeries, with her heart problem she won't last more than a few days.

So I feel like I am making the choice of actively killing her, or passively killing her. And it makes me sick to my stomach ALL the time. It's a paralyzing weight on my heart.

And then there is that little piece of hope that always lingers in the back of my head that she will be a miracle baby. She will be the one that shocks the doctors and pulls through but I don't know. I don't know how to hold to that.

This whole experience has pretty much rocked my world in that everything I thought I knew and understood about life is suddenly in shambles. Everything seems so shiny and bright and simple before. That's what life has become, a before and after.

And I sit there and think, is this that moment? Is this the moment, the struggle, the event that I will measure the rest of my life by? Before Gracie and after Gracie? I'll have my own timeline of BG and AG.

I married young while most of my friends stayed single and lived it up in college. I had two kids and put the distance between us even more. I always felt a little older, a little more worn, (I guess having kids does that to you).
And then my friends started getting married and having kids and I felt like we were on the same plane again.

And then this happened. And I feel ancient. I feel like I've aged 100 years and that there were so many things that bothered me or worried me BG and now I just brush them aside. Things as simple as fridges.
My husband wants side-by-side doors and I wanted the one with the freezer drawer. BG I would have fought TOOTH AND NAIL to prove my choice was better. Now I don't care. It's a fridge. It will be cold. Done and done.

I'm not saying I take no pleasure out of life anymore or that I give into my husband's opinions every time... I'm sure he is reading this scratching his head and thinking, has she EVER given into my opinions? (love you honey).

I guess I'm just saying I just feel tired and I use up most of my fight on Gracie.

The bottom line is, we won't know anything until she is born so really I shouldn't borrow trouble, but it's true we have to plan. There has to be plans. If she does pass quickly what will we do? Where will we bury her? Will we hold a service? You don't like to think about these things, but these things, these foreign things are suddenly creeping onto the stage of my life and there is nothing left to do but deal with them.

Googling for pricing on little caskets is a strange experience let me tell you. I think even Google, hesitated and didn't know what to put into the auto-fill function. And maybe she won't die. Maybe she will survive, but if she doesn't, I need to have a plan. I don't want to have to be making all of those decisions in the middle of total grief.

Sorry. This post was heavy. For the record, I am STILL okay. It comes with the territory I guess. But I want to remember. I need to remember it all.

Growth Update

2011-10-11T17:03:00.001-07:00

Went to the perinatal doc today and had an ultrasound. Her growth is back on track! So that's good news. She is still little in the 6th percentile and measuring small by about two weeks, but at least she is increasing again.

We got to do a 3-d ultrasound which was fun to see really see her facial features though Kendall thinks it makes her look a little weird, but I am only 26 weeks so she hasn't really accumulated all the baby fat yet that helps. I will try and scan them and post them soon. (but I hate scanning so we will see HOW soon.)

Anyway. Just wanted to let you know.

Also wanted to let you know I've developed a new fear that they are going to tell me whoops we were wrong and she is actually a he. That would throw me for a loop I think. ;) Oh how I love my irrational fears.

Girls in White Dresses

2011-10-10T16:17:00.000-07:00

This is the beauty my mom's friend made for Gracie. It's teeny right now since we don't really know when she will be born or how big she will be. I think she is making one in a slightly bigger size as well.

The neck and arms are velcro because, worst case, she is still born, their limbs aren't flexible so it's difficult to dress them. The velcro solves this because she could just be laid onto the dress and velcro'd in.

I know it's been a while since my last post which was mostly a bleak version of my perspective but I assure all of you we are doing all right.

I have an appointment with the perinatal doc tomorrow which will tell us a bit more about her growth trend so that will be good, or at least informative.

I am about 25 weeks right now which is incredible because this has literally been the longest pregnancy of my life and I am STILL not in the 30's but oh well.

I have been trying to enjoy it though. I'm trying to just really savor the time right now that I have with Gracie. She is very very active and so I lay in bed at night and just feel her bouncing around and it's comforting. It's our girl time.

We are going to be moving in a couple weeks to a new house which is exciting!!! AND the bonus is it will keep me EXTREMELY busy as there are MANY projects to be done.

The problem with moving to a new hosue is we will also be moving to a new ward (moving to a new ward is kind of like moving to a new school district for my church, you go to whatever building and time based on where you live). ANYWAY, the dilemma is what do I say?

I'm clearly pregnant and will clearly get questions, but saying Hi, I'm Emma and yes I'm pregnant with a girl and she will probably not survive, is kind of a conversation killer.

Case in point. I went to a birthday party for my second born and I was chatting with all the moms. I basically pretended everything was fine with the baby et cetera, but there was this one lady who went on and on about how great it was to finally be having a girl after three boys and all the milestones in a girl's life and how great her wedding would be. (SERIOUSLY? She was very adept at adding salt to the wound). And finally I said, yeah she has all these problems and might not ever leave the hospital.

That shut her up and she tried to discretely avoid me the rest of the party. So, I don't want people to avoid me because they don't know what to say so I think I might just not say anything???

Would you be offended if you were friends with someone for a few months, she had her baby, and then you found out all along that she knew the bad news? I don't know. Maybe it will just come out naturally.

Anyway. I'll try to update tomorrow about the appointment. Until then...;) (see the smile on my face? I'm doing just fine.)

Update... Sort of...

2011-09-20T08:57:00.000-07:00

Went for another ultrasound yesterday. AND.......

"we'll see you in two weeks and we'll see what's happening then".

The doctors pretty much have no idea what to expect other than that this shouldn't be happening. Trisomy 9 babies should miscarry by ten weeks. And yet... here I am.

She is still in there kicking around though, she is measuring about 3 weeks behind as far as her size. Which isn't great and could mean she will be born tiny or could mean she is beginning to stop developing or could mean nothing and she will pick up growth next week. She is 11 oz. Like a medium sized steak. (steak is also the food I have craved the most this pregnancy)

I have felt unsure how much to post on this blog not sure if I should put my heart out there but I think it would be good, and I think I would like to remember, and I think I would like to be able to be real. Maybe someone somewhere will go through something similar and it might help them.

What do I feel most of the time? Nothing consistent. I feel flickers of hope. Then I feel hopeless. A lot of the time I am so ANGRY I can't see straight.

I find myself resenting every pregnant woman on the face of the planet. Why should they get to have a healthy pregnancy and I don't? Why do they get to anticipate a normal delivery and happiness and I face the uncertainty, and pain, and possibly the death of a child?

I lose myself in fiction every night. I put the baby down (sometimes insanely early), set the older boys up with video games or Legos and go to my room. I've watched the seasons of Gilmore Girls and am currently working on Castle. (and I think in another life I would have been an AWESOME detective).

I read book after book and peruse stranger's blogs about their normals lives and how they went to the fair or the first day of preschool or whatever. It doesn't matter. As long as I am not thinking about my life I am good.

I ignore phone call after phone call from friends, many of them very very dear and very very close because I just don't want to think about it or talk about it. I lie to strangers when they ask when I am due and what I am having and pretend nothing is wrong.

My husband comes home at night and we talk and I often have my 10 P.M. cry and he just holds me and says nothing because really what is there to say? It will be okay? Because neither of us know what to expect.

He has great faith and hope and is optimistic and strong, and it is a good thing because sometimes I am dead weight and he has to pull me along.

And then there are good days where I smile again and laugh and feel hopeful that maybe somehow the tests are wrong and she will be born and the doctors will scratch their heads and chock it up to miracles.

But I know. She still has a heart problem and still has spina bifida. And what phrase drives me crazy right now?
"The Lord has a plan for you".

Don't get me wrong. I KNOW that. If anyone knows that I do. And I truly truly believe that he does. But for some reason hearing that right now is not helpful. Maybe someday when I look back I will be able to see that clearly and understand but right now. Right now in the middle of it, I hate it.

It's like waking up TO a nightmare instead of waking up FROM one.

And sometimes at my low points I talk to Kendall about how I wish I could just miscarry right now so it could all be over and we could begin to heal and move on. And what does Gracie Belle do? She kicks or punches or whatever saying "hey!" which is sweet and creepy and humbling all at the same time.

But after all this. After all the pain and frustration and anger I find myself being comforted. I feel little nudges from the Spirit giving me strength to go on. To get up and take care of my darling monkeys and keep it together.
(Because when you have to remember spelling tests on Fridays, monkey number two needs a stuffed animal on Tuesday, and to wear red on Thursday and monkey number one needs slippers for Friday and he has never owned slippers in his life and you buy some but they are the wrong size so you have to go back late at night to buy more so he won't be sad that he is the only one without slippers, You have to keep going.

My kids will probably save me from deep depression because they keep my head above water and focused on other things.

I find strength in the love and support of friends and the community all praying for our little family and our little Gracie girl. I hold desperately to the Lord needing him and loathing him all at the same time.

But like everyone tells me, I know he has a plan and I have hope that we will survive this and I will be better for this. Stronger for this.

Hopefully you made it this far and didn't stop mid cynical rant because there are obviously good days and bad days and overall I REALLY AM doing okay. But that doesn't mean it doesn't paralyze me sometimes.

We love you all and thank you for your prayers and donations and support and hugs. Next week is the heart doctor, so get ready for more head scratching and waiting. ;)

Thanks for listening.

Waiting waiting waiting

2011-09-01T08:28:00.001-07:00

My most hated phrase in the English language?

"we'll have to wait and see"

We went to the perinatal doctor and geneticist today. It was just one of those well, she's in there so let's just 'wait and see'.

It's difficult to reconcile what we see with what we know. From the ultrasound she is just a baby. You can see her moving and wiggling and playing with her feet. But we know things are not good.

The geneticist said that the results came back full trisomy 9 but there is no way to completely rule out mosaic trisomy. (which just means only some of the cells are affected). They felt pretty confident it was full though.

Her facial features are completely normal though. Many of the trisomy 9 babies we have seen ultrasounds and pictures of are severely deformed. Gracie seems to be normal. Her feet might be clubbed though.

In researching medical journals we have only found two cases of full trisomy 9 babies born alive. There was a set of twins in the 80's that were alive for a few hours. From the findings they looked to be SO much worse off than Gracie. One didn't even have eyes.

I guess we will let her and the Lord decide what she does and love her for as long as we have her. I don't want to keep her alive unnaturally (like only able to live hooked up to machines), and we and the doctors won't opt do major surgeries if it will only extend her life by days. I don't think there is any reason for her to go through the pain.

All we can do is love her and 'wait and see'.

No news is...

2011-08-30T16:41:00.000-07:00

We got the amnio results today. It isn't good.

She has trisomy 9. Full trisomy 9 which is worse than partial or mosaic. I don't know much about it. We are meeting with the doctor on Thursday to discuss it.

The thing about it is, neither the doctor nor the genetic counselor have ever seen a Trisomy 9 baby make it past 8 weeks in the pregnancy. I'm 20 weeks. Everyone is puzzled as to what to expect.

The chances of her surviving the pregnancy are slim, the outcome of life if she is born is probably slimmer. Needless to say we are heartbroken and we find ourselves in yet another situation where we just have to wait and see.

We are okay. Really we are. We are just having to process the news and well... wait. If anything becomes clearer after meeting with the doctors who have no experience with a case like ours I will keep everyone posted.

Thanks for the prayers.

I Heart Gracie

2011-08-26T16:33:00.001-07:00

Just wanting to jot down real quick. We saw the heart doctor this afternoon and things looked the same... which is good. Though her heart has a ventricle problem it is still growing proportionately and if it keeps doing that, the heart surgery would be minimally invasive (they would go through her thigh and use a balloon to stretch a part of the heart or something as opposed to open heart surgery...)

I am probably describing all of these things so wrong and medical aficionados all over the world are cringing but oh well.

Anyway so doctor's appointment today=good news so far. ;)

Specialists in Torture

2011-08-26T07:59:00.000-07:00

I called the doctor today for the amnio results and they said the nurse had checked a wrong box and so the results wouldn't be in until Tuesday. I feel like I should get my money back or something.

I mean I know I'm not the only person anxiously waiting for news and results but SERIOUSLY. Waiting has to be the worst part of this.

On a more positive side we met with a developmental doctor yesterday and it was such a good experience. He was just very optimistic for Gracie and really helped us to see what life could be like and how GOOD life could still be. I truly appreciated that after all the doom and gloom diagnoses we've been getting.

The Children's hospital is also AMAZING. I mean we walked in and there was this guy dressed up popping popcorn and there was this huge flying contraption with all kinds of animated characters on it and balloons and crazy murals and it was just super cool. It's too bad children go there because they are sick because otherwise it is a pretty awesome place for kids.

Anyway sorry to keep everyone on pins and needles. Let you know more when I know more.

Unreal Experiences

2011-08-23T18:55:00.001-07:00

So I had the amniocentesis today. It was a little trippy.

I couldn't think about the whole needle aspect of the ordeal so I just watched the ultrasound screen on the wall and it was crazy to see little Gracie just floating along and all of a sudden this pointy thing pokes on in.

I wonder if she wondered 'what in the HECK is that?'

It went really well and was something of a miracle because she is normally CRAZY in there. I think she is practicing for some sort of circus acrobat trick but when we did the amnio she stayed incredibly still.

I just watched her little heart beating and kept saying in my mind 'Just hold still Belles'. And she did. I guess she knows that one of my requirements as a parent is perfect obedience. I'm glad we have this established early on.

We won't know the results of the amnio for a couple of days so I will keep you posted.

Waiters, Needles, and Priceless Legos

2011-08-19T06:41:00.000-07:00

Last night I had a dream wherein Gracie's heart had stopped... the seriousness of the dream seemed to be offset by the fact that I was at a restaurant called shooters where you could either order food or have the waiter deliver your baby.

We went to two doc appointments yesterday and her heart was beating away just fine. It was mainly more of the same except they talked about doing an amniocentesis (a procedure where they use a long needle to extract some amniotic fluid... sounds fun.) The point of the procedure would be to determine if there are any chromosomal abnormalities like down syndrome, or trisomy 13, things of that nature.

I think we will have it done to see where everything stands. A lot of times with a baby with multiple problems there can be a chromosome problem. With down syndrome she would be fine. With something like trisomy 13, she would be expected to live a few hours to a few months.

Basically no matter what they tell us they always tell us it's just not certain. So we wait.

The perinatal doctor is a little... dry sometimes. I asked him if the amniocentesis would hurt.. really long needle remember? He just smiled and said oh no it won't hurt. I said, 'really? because it sounds like it would hurt'. He said, 'well only a little-- just a prick'.

I will let you know.

In other news:

Want to see the most expensive Lego in the world?

Why? You ask? It's not plated in gold or diamonds is it? No. This baby is worth $400 dollars when covered in snot and up your four year old's nose.

Yep. It just keeps getting better and better. ;)

Donation Follow Up

2011-08-16T14:59:00.000-07:00

Just wanted to say that we set up the official account. You can go into any Wells Fargo Bank in the US and say I would like to make a deposit in the Gracie Belle Ray Donation Account in Flower Mound Texas and they will be able to look it up and deposit it directly.

Of course if you would prefer mail, just email me and I will email you my mailing address.

We are so humbled and grateful to those who are so willing to donate for our Gracie girl. And I will also say that over the past few days I have felt a very strong feeling of peace and comfort. I know without a doubt that it is a direct result of all of your prayers.

Thank you for everything. Our hearts are full.

Emma and Fam

MRI scan

2011-08-15T17:30:00.000-07:00

So here she is. If you look at the bottom of her back where her rump is you can see the spine looking like a u. It shouldn't be curved and sticking out like that.

But can't you tell she's already a doll?

Friends of Gracie

2011-08-15T10:59:00.001-07:00

In response to the numerous offers of support and monetary aid, we have opened a savings account for Gracie Belle to be used solely for her medical expenses.
Please do not feel pressure to contribute. We just want it to be there and proper so that the donations go exactly where they are supposed to.

Please also know that if the time comes when little Gracie no longer has need of these funds, then the unused monies will be distributed to all the contributors, or if they prefer, donated to spina bifida research.

We can't express how deep our gratitude is for your support. We love you.

Just email me at emmajaneray@gmail.com and we can work out how to transfer funds. Thank you!

2011-08-15T10:20:00.000-07:00

Dear Friends and Family,

Let me first say that we are overwhelmed by the outpouring of love and prayers and concern from all of you. It is amazing to know how much support we and out little Gracie Belle have.

This post serves two purposes: one being, I want everyone to know the specifics of the situation and two being, I am fairly unpredictable right now and seeing as I can burst into tears while ordering pizza over the phone, it is best to just communicate in typed words. (And yes, the pizza guy was very polite and said he was sorry which I appreciated.)

So. We found out on Thursday that we are FINALLY having a girl. Salvation was mine for just a moment. Then we found out she has spina bifida (a condition where the spine is growing outside of the body), hydrocephalous (water on the brain associated with the spina bifida), and a heart condition.

My visions of my pink little girl began slipping through my fingers.

But a few days, a few doctor's appointments, and several hundred dollars later, it's beginning to process and we are starting to rally.

We had a heart echo wherein we learned that Gracie's aortic valve in her heart is malformed. It is causing the left ventricle to swell and causing a back splash of blood. I mean, there is more to it but I don't know the words and let's just say it is not good.

At least that is what the doctor's always seem to say- like it is scripted or something:

It is not good.

I have to go in for a heart echo every two weeks right now to monitor the heart for heart failure. The next eight weeks are critical. If she makes it through, she should make it to birth. The Doctor said she is hopeful that she will. Once Gracie is born it could go one of two ways. Either the heart will have grown just enough that they can repair the valve and it will hopefully get back to business as usual or the left side of her heart will begin to atrophy and they will have to somehow divert the flow and just use the right side of her heart.

That sounds bad. I know. But apparently the right side alone can be used and live a fairly normal life with running and skipping- probably not sports- but a normal kid life.

However, the spina bifida will probably keep her from running and skipping. The lesion is pretty high on her spine and the odds of her being able to walk or have bowel control are pretty low.

The water on her brain is also not good. The outcome will probably be that she will have learning disabilities. The MRI doctor said she will have a personality and be able to speak and learn and possibly go to school- she just might have problems like dyslexia or in some cases her right brain may not be able to communicate with her left brain.

The biggest problem right now is everything is unknown. her prognosis is good for surviving the pregnancy so we are holding to that. We just don't know what the condition of the heart will be or how severe her spine problems will be.

The minute she is born she is going to be whisked away to have heart surgery. Normally she would be whisked away to have spine surgery but they have to fix her heart first or else she wouldn't survive the spine surgery. Soon after she recovers from heart surgery, then she will have the spine surgery and once she recovers from that. . . then, hopefully little Gracie Belle will be able to come home.

There are difficult days ahead and the outcome is far from certain but we have hope and we truly believe that miracles can happen so please don't stop praying.

The boys are taking it in stride. They pray for Gracie in every prayer. One of James' best friends at school was a little girl in a wheelchair. Though it breaks our hearts to think of the possibility of a wheelchair, James has tender memories of his friend and I know he will be such a loving, protective brother. James will start first grade next week and we have enrolled Harrison in a five day preschool program so hopefully that will give them routine and keep them busy. Bennett is of course blissfully unaware, but he has started sleeping through the night- magically- and I am not so sure if it isn't his way of supporting me.

It is strange because I literally go from being a stay at home mom who rarely leaves the house to someone with seventeen appointments in one month. I even bought a calendar.

We are hopeful and prayerful and know that God is very aware of us and our trials at this time. We have the utmost faith in Gracie and know that she is strong and will make it through. You should see the hard times she gives the MRI and heart echo techs with how wiggly she is.

Kendall calls her his little fighter. Thanks to all of you for being in her side of the ring.