Saturday, January 28, 2012

The Funeral Part One

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... 

Wednesday, January 25, 2012

The Almost Funeral

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.

Sunday, January 22, 2012

Bundt Cake and Setbacks

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

Friday, January 20, 2012

A Pause

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.

Saturday, January 14, 2012

My Little Gracie Girl

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.

Wednesday, January 11, 2012

Photos and Funeral

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.

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.


Monday, January 9, 2012

Our Gracie Belle

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

Friday, January 6, 2012

Prep PS

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.


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.