Now I Lay Me Down To Sleep

We have finally received our pictures from our NILMDTS photographer, Andrea! Please visit her website, here. She does amazing work, and we are so beyond impressed with the images we received from her. I wrote about NILMDTS in one of my first posts, but here's another link to their website if you'd like to read more about them. I can't say enough about this organization. The gift they give to bereaved parents is so precious - I don't even think I can put it into words. I spent many hours during my pregnancy looking at infant photographers' websites, and was so looking forward to having Olivia's newborn portraits done. If it wasn't for this organization, we would have been left with only the images from our own camera. While those are beautiful too, and we are lucky to have so many, professional photographs (especially these) capture the moment like nothing else can. I could probably type for hours about how thankful Kurt and I are for these pictures.

Isn't she beautiful?

Merry Christmas!

... Or Merry 2 days AFTER Christmas. :)

And the angel answered her, “The Holy Spirit will come upon you, and the power of the Most High will overshadow you; therefore the child to be born will be called holy–the Son of God.
Luke 1:35

For God so loved the world,

that He gave His only begotten Son,

that whosoever believe in Him

should not perish but have everlasting life.
John 3:16

Kurt is playing his new Madden 2010 xbox game, and I'm laying on the couch - finally allowing ourselves to relax after running around like chickens with our heads cut off for the last couple of days!

Although Christmas was different than we had been expecting it to be (My due date is in 3 days, so we both had assumed that I'd either be HUGELY Pregnant on Christmas, we'd be in th hopital, or we'd have a brand new baby at home with us), but we were SO blessed to have such an amazing holiday with family. We're fortunate to still live in the city as both of our parents and siblings... it's nice to be able to spend holidays with both sides and not have to travel! MANY families had to cancel or postpone their Christmas celebrations because of the ridiculous blizzard conditions, I'm so glad we didn't have to!

On Christmas Eve, the snow started.... and never stopped! We were so lucky to be able to get to church. Many other churches cancelled their Christmas Eve AND Christmas Day services because of the weather - ours cancelled all but one! I'm so glad we were able to go... it definitely wouldn't have felt like Christmas if we'd had to miss it.

It was a very busy Christmas for us! After church on Christmas Eve, we went back to Kurt's parents' house to eat and open gifts. Then it was on to my Grandma's to open gifts and spend time with my Mom's side of the family. On the way home, we got the jeep stuck in the snow at the entrance to our complex! Kurt tried so hard to get it out, we even walked to the apartment to change into snow clothes, and had his mom drive out to give us shovels! Nothing worked, so luckily a truck with a snow plow passed us and pulled us out with a chain. When we finally got inside, Kurt and I exchanged gifts. We went to Christmas morning at my parents' house and opened gifts. Then back to the Miller's for dinner. In the evening, we returned to my parents' house for dinner #2!  Kurt worked over night, slept all day, and then had to go BACK to work again for an evening shift! While he worked, I went over to my Aunt Allisons for Christmas with my Dad's side of the family. I went back to my parents house, and Kurt picked me up on his way home from work.

Kurt and I gave each other meaningful gifts this year. He gave me a beautiful ring and necklace set with Olivia's birthstone. He actually bought it for me when we were at the mall trying to find something to wear to her funeral (not a very fun shopping trip). He let me wear the ring right away, but made me wait until Christmas for the necklace. I gave him a keychain, engraved with "daddy" on one side, and the otherside said "Daddy's tiny angel", Olivia's name, birth date, and weight. I couldn't wait to give it to him, so he opened it a couple of weeks ago.

We also received some amazing "Olivia" gifts from our parents.  Kurt's mom and dad named a star for Olivia. I almost started crying when Kurt unwrapped the framed certificate. I love knowing that she'll have something named for her that will exist in the universe forever. My dad gave us a beautiful ornament for our Christmas tree. It's a pink prism, in the shape of a star. There's a story behind it - when I was little, he and I would sit on the front porch all the time, looking at the stars. I asked him where they came from, and he told me that when someone dies, God puts a star in the sky for their families to remember them by. I had him point out my Grandpa's star and my sister, Katie's. It's one of my favorite memories that I have with my dad. He wrote a beautiful letter to go along with the ornament, explaining that we now have our own "star" in the sky to bring us comfort. Of course, I cried when I read it! Isn't it amazing how well these gifts go together? It's almost like our parents got together and coordinated.

Aren't we lucky to have such amazing, supportive families? I don't know how we would have gotten through this past month without them. We are truly blessed. Words cannot express how grateful we are to them.

Kurt and I gave "I ♥ Grandpa" and "I ♥ Grandma" frames for both sets of grandparents. Pictures go in each of the letters, so each frame is filled with nine pictures of Livie. Our parents really seemed to love them. It felt so good to actually give something meaningful for Christmas this year. I was more excited for them to open these than I was to see any of my own presents. A much better feeling than just picking something up at Target. Hopefully we'll be able to come up with something creative to give next year!

I don't have the Christmas pictures from our camera uploaded yet... but here's some pictures that I took a couple of weeks ago of our apartment all decorated for the holidays! Also, there are pictures of some of our special "Olivia" ornaments.







Christmas garland, picks, beads and lights on our TV stand... since we don't have a mantle in this tiny apartment :)
Our weird heater thing with Olivia's angel bear that plays silent night, and Kurt's bronco stuff (notice the stocking hat, haha). And, our stockings. We bought the little pink one for Olivia a couple of weeks ago. It didn't feel right to hang out little "family" of stockings without having one for her up there too.  Our *first* Christmas tree!! It's a little hard to see, but we took that tiny Christmas tree down on the floor in front of the presents to the Cemetary for Olivia about a week ago. It has a pink snowflake "Baby's first Christmas" ornament on it. Luckily, we got there before the snow storm! 
The Broken Chain
We little knew that morning that
God was going to call your name.
In life we loved you dearly.
In death we do the same.
It broke our hearts to lose you.
You did not go alone,
for part of us went with you
the day God called you home.
You left us peaceful memories.
Your love is still our guide.
And though we cannot see you,
you are always at our side.
Our family chain is broken
and nothing seems the same,
but as God calls us one by one,
the Chain will link again.

This poem came with a beautiful ornament that my mom bought us at parables - she brought it over to our apartment the day we came home from the hospital. It's amazing how the smallest gifts can mean so much! I don't know if it's very visible in this picture since it's so small, but he bottom link of the chain is broken off.


Kurt and I bought this one ourselves from Parables when we were Christmas shopping. It looks even prettier in person - the angel's head is a pearl and the wings are glass. She REALLY sparkles in the light.

I don't want to bombard everyone with pictures of ornaments, but we have a few other special family ornaments: A "Future Mr. and Mrs., 2009" Lennox, a Snow Baby one that's an angel sitting inside of a Christmas present, and says "gift from god" on it. We also have an angel frame ornament with Olivia's picture inside of it, and a pair of porcelain Hallmark baby shoes that we got from my parents while we were in the hospital, right after Livie was born. These will hang at the very top of our tree every year! At some point I'll have to stop myself from buying new ones all the time. I'll post pictures of the special ones we got FOR Christmas when I get around to uploading them :)


Our pretty table with a centerpiece I made and new Christmas dishes!


Garland in the Kitchen... and last but not least, what Christmas house would be complete, without Santa on a chopper? (2 guesses of who bought THAT decoration! haha).

Merry Belated Christmas everyone! I don't know that we would have been able to make it through this Holiday season as well as we did without the love and support that we've received from each of you. We are blessed in many ways.

 

Happy One Month Birthday Livie Bear!

Olivia was born ONE month ago today! Can you believe it? I certainly can’t. Time has literally been flying… I can’t believe it’s already been so long! All the details are so fresh in my mind that I feel like we just left the hospital. What a crazy month.


I don’t think I can even put into words how much Kurt and I miss our little girl. We are constantly thinking of her every hour that we’re awake. She’s the first thing we think of before we fall asleep, and the first thing we think of when we wake up. We are happy when we think of her. We both try to avoid thinking about “what would be” or “what if”. God planned Olivia’s life, and He wanted it to be exactly the way it was – short, sweet, precious. Both of us really believe, trust, and find comfort in that. Don’t get me wrong, we were excited about doing so many things with Livie, and I do get sad when I think about those things sometimes (and sometimes, I get REALLY sad)… BUT I know that God had all of our days with Olivia planned before she was even created. We will get to do ALL of the things that we were excited for… someday, just not with Livie. It really helps us to remind ourselves that Olivia lived the exact life that she was supposed to live… for exactly as many days, minutes and seconds that she was supposed to live it. One day, God will bless Kurt and I with another baby who will be just as perfect and beautiful (or handsome… if it’s a boy), and we will be even better prepared to experience all of those things that we have been imagining.
Being Livie's parents has changed both of us for the better. It has made us capable of seeing what really matters in life... so many things that seemed important to us before, are completely insignificant now. I can't believe how much time I wasted on things that never really mattered. Kurt has said many times that that little girl changed his whole outlook on life, and made him want to speak, think, and act differently. Not that we were horrible people before hand, but ya know. :) It has also taught us not to take anything for granted - we are learning about how important it is to cherish the little things in life, and to live in the moment rather than constantly looking toward the future, because we found out the hard way that the future is never certain.

I know that lots of people are anxious to hear how we're doing, so I will post again soon with an actual update on what's been going on for the past month.

Bring The Rain..

Early in my pregnancy, I somehow stumbled across the blog of Angie Smith, called Bring the Rain. She and her husband, Todd, live in Nashville, and have 4 beautiful little daughters. They found out 20 weeks into Angie’s pregnancy with their fourth, Audrey Caroline, that she had poly cystic kidneys, a heart too big for her little body, there was no amniotic fluid and her lungs were not developing – all fatal conditions. Angie and Todd were given the option to terminate the pregnancy, and decided quickly not to. Angie started the blog right when they found out this news, and used it to communicate the details to family and friends. Audrey was born via c-section in April of 2008, and lived for about two hours and 45 minutes. The blog tells such an amazing story of the way that God worked through Angie, Todd and Audrey. [There’s a reason I’m explaining this… stick with me :)]. Todd is a singer for a pretty well-known Christian group called Selah. When they first heard the news about Audrey, he and Angie wrote a song for her called “Carry You”. MONTHS ago I put this quote from that song on my facebook profile. They were obviously writing this for a child that they knew they would lose, but for the most part it is appropriate for any new mother (or father)…

“I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One whose chosen Me
To carry you”


So, I posted it to my own profile, fully expecting to have a perfectly healthy baby girl. I just thought it was sweet.


At the bottom of Bring the Rain is a little play list of music. One of the songs on that playlist was/is Glory Baby – the song we played at the beginning of Olivia’s service. I used to listen to this song over and over while I read about Audrey’s story late at night when Kurt would be working.


Angie’s blog now has thousands upon thousands of followers. When she delivered Audrey, radio stations across the country were announcing that she was in surgery. That day, her blog received hits from every state in the US and more than 90 countries. She still discusses Audrey there, but it has transformed into SO much more than that – this woman is doing some serious good, that she never would have imagined herself doing if it wasn’t for Audrey.


I told my mom about this blog, back then, and how amazed I was at the strength of this family – I didn’t understand how they could be holding their baby, KNOWING that she wasn’t going to be leaving the hospital with them, and still be singing, laughing, taking pictures of her, bathing her, etc. I was so blown away by their ability to be happy when they knew their baby was hours away from passing away. Every time I told someone that I was reading her story, they told me to stop because I was going to scare myself and make myself worry unnecessarily. I never worried, and I regularly checked it for updates all throughout my pregnancy.


One night while still in the hospital after Olivia passed away, I was in bed with my computer and Kurt was sleeping. I went to my list of Favorites, and clicked on the familiar link to Bring the Rain. As I was waiting for the page to load, I remembered that I’d put that quote from Angie’s song on my facebook. “How ironic”, I thought.


A couple of weeks ago, I was sitting here in the living room, searching on Amazon for Christian books about infant loss. I had seen quite a few about miscarriage and stillbirth online and at Parables and had purchased a couple books that were geared towards all three, but I was trying to find something more specifically geared towards what Kurt and I experienced. And then I saw it – “I Will Carry You: The Sacred Dance of Grief and Joy”, by Angie Smith… available for pre-order. (You better believe I pre-ordered that baby as fast as I possibly could!)


Are you kidding me? I couldn’t BELIEVE it!


Now I know why reading about Audrey’s story never scared me… why I listened to “Glory Baby” repeatedly, and why I felt the need to put the quote from “I Will Carry You” on my facebook. God Led me to Bring the Rain for a reason. It was not ironic, it was not an accident, and I didn't "stumble" across it as I thought I had. I was able to draw so much emotional and spiritual strength from these things without even realizing it… and had I never “found” this blog, I know that I could not have handled things as well as I have. I don’t know that I would have been able to make our time with Olivia a joyous time. [As for Kurt, I don’t know where he gets his strength from… maybe he’s just that amazing :)]. I also know that these past three and a half weeks at home would have been harder for me had I not been able to read Angie’s posts from back when she was first at home, recovering from her c-section after they lost their Audrey.


Thanks to everyone who just read all of that! I just put that all together in my head over the last few days, and I was so overwhelmed by it all that I felt I needed to share it. Please check out Angie’s blog. I linked to the main page above, but this one is to the beginning of their journey. (Scroll to the bottom to start at the beginning)


I want to end this post this morning with a quote from a letter that Angie wrote to Audrey. I re-read this the other day for the first time since Olivia was born, and it affected me totally differently (not surprisingly). Swap out the “2 ½” hours with “3 days” and it’s EXACTLY the way Kurt and I both feel about Olivia. People have been asking us how in the world we aren’t just a complete wreck right now. This does an amazing job of explaining, and I couldn’t have said it better myself.


“I cry for you often. I miss the smell of your skin and your perfect little nose. My arms ache from emptiness. I tell your daddy all the time that I just want to hold you again. I cannot see to write these words because my eyes overflow with the tears of a mother who has been asked to give her daughter away. I knew I would love you when I met you. I knew you would become a part of me. What I didn't know was that instead of feeling like it was a brief encounter, I feel like the world stood still. He somehow gave us an entire lifetime of memories in such a short time. I didn't feel like I lost a baby, I felt like I said goodbye to someone I had always known, who had been my daughter for years and years. Even now, as I write, it seems impossible that you were only with us for 2 1/2 hours. Thank you Lord, for giving us all the time we could have asked for with her. The clock was insignificant... we knew her deeply, a lifetime's worth.”


Perfect Words.

Love,
Betsy

Olivia's Nursery

I just wanted to share some pictures of Livie's bedroom. We had it almost all the way finished before she was born, but we finished everything when we came home from the hospital. Olivia won't be coming home to spend time in it, but it's still her room, and it felt wrong to leave it unfinished. We hadn't brought the rocking chair over to our apartment yet (It's in my parents' basement), so Kurt came up with the idea to buy a loveseat or a big chair to go in the empty corner so that we can use it as a quiet room to relax and remember our little one. Hopefully we'll be able to do that soon!

Olivia's crib that Daddy put together

Close up of the letters that I painted, along with part of Livie's bedding, and wooden pegs I found to match.

Our two favorite things - Livie's teddy bear snow suit and her pink and white outfit that we were planning on using as her "coming home" outfit from the hospital. You can't tell, but it says "Thank heaven for little girls" - I loved the pink outfit they gave to us to use in the hospital because it said the same thing.

Closet

Pink and Orange shelves that I painted to match everything else

Livie's dresser, along with the animal paintings that I did. The elephant is wearing Daddy's hair cover from my c-section.

Sleep in Heavenly Peace

Olivia's memorial service was on Friday, November 27th, at the funeral home. She was laid to rest at one of the Catholic cemeteries, next to my grandparents' plot - Livie's Great Grandpa Ed is already there, and her Great Grandma 'Nore will be there someday. The service was absolutely beautiful. We had never been to, much less planned, a service for an infant before so we didn't really have any idea what we were doing, but I think it turned out perfectly. We feel like it honored Olivia in a very sweet way, and while people were certainly teary, I really think it celebrated her little life and her beauty rather than mourn her death - which was exactly the way we wanted it. We don't get to plan Olivia's birthday parties, or any of those special things that parents usually get to put together for their kids, so we wanted to make sure that every detail of the one thing we were able to plan (that no parent should have to..) was perfect.


Our pastor, Mike, lead her service at the Chapel, and then we crossed the street to the cemetary for the commital ceremony which was done by Father Shane, the priest from my grandma's church. Both of these men are family friends as well as our pastor/priest, and they both spoke about Olivia beautifully. There was a very personal feel to the whole thing - Mike had visited us in the hospital and had gotten to meet Olivia.  I need to ask him for a list of all the scriptures and prayers that he read, because they were amazing. The funeral home gave us a DVD of the service, so I 'spose I could get them from that, but I don't think I'm up to watching it, or will be any time soon. Actually, I don't know if we'll ever watch it, but it's nice to have just in case.
For Olivia's flowers, We ordered a beautiful spray full of pink roses, carnations (i think?), hydrangeas, baby's breath, and pink ribbon. The florists put a big, adorable, soft pink teddy bear on it, and at the cemetary, Father Shane brought her to me and told me to think of Olivia everytime I hold her. we have slept with her every night since. There were also two big flower arrangements that matched the spray for her casket and sat in two pretty white urns on either side of the front of the chapel. We also ordered boutonnieres and corsages for Kurt and I, and for our dads, moms, sisters, and for my grandma. They were made of pink roses, and the same ribbon used in the flower arrangements. Kurt and I also wore angel wing pins that my mom found for us.  Everything was simple, pretty, and sweet...and very pink, which was perfect for our little girl.


Kurt came up with the idea to wear pink for Livie - he wore a pink shirt and a pink tie with his suit, and I wore a dark grey dress with a pink and grey sweater.

Kurt put a lot of time and effort into a slideshow of pictures of Olivia. He worked really hard on it, and it turned out perfectly. The pictures were set to "Somewhere Over the Rainbow", sung by Faith Hill. He did such a great job. Livie is lucky to have such a sweet daddy. We could only pick a handful of pictures for this one, so the plan is to make a longer one with a lot more detail. Maybe we'll get it put on Youtube and then I can post it here.


The songs we chose were [click to listen] Homesick by Mercy Me (We chose the album version, this one is the accoustic), and Glory Baby by Watermark. They are THE perfect songs for Olivia and for what we feel about her. We have found a lot of comfort through listening to them - their lyrics have really helped us to stay positive.

This is the outfit that we bought for Olivia to wear. We had planned on having her wrapped in this froggy blanket that I registered for, but her casket was so tiny, there was no room! She looked SO perfect and beautiful in it.

Kurt's good friend Taylor from his unit in the Marine Corps and his fiance Brittnie flew in for Olivia's funeral on Wednesday. We are so thankful for them. They have been SUCH amazing friends to us. I Know that having Taylor here really helped Kurt get through those few days. They stayed with Kurt's family, so they spent Thanksgiving with us as well. If this is any indication of what a great guy Taylor is, when he heard the news he didn't ask if we wanted him to come into town, he just said "I'll be there Wednesday". He dropped everything and flew all the way from San Diego. Brit was supposed to go home to Utah for Thanksgiving, and she changed all of her plans to be with us too. They were/are a great support, and I'm so glad they were here to spend the Holiday with us and come to Livie's memorial.

We set this table up outside of the chapel, full of Olivia's things. Kurt got me the white angel bear on thanksgiving night - when you wind her up, she plays "Silent Night". She reminded us of Livie right away. Pictures of Olivia, a family picture, her tiger and froggy, the book we read to her in the transition room, her foot and handprint, the molds that the chaplain from Children's made of Livie's hand and foot, the bag that the nurses packed of all of Olivia's "hospital things", the blanket Olivia was wrapped in, and the quilt my sister made for her, the 3 hats she wore in the NICU, the holy water from her baptism, a framed scrapbook page that the NICU nurses made for her, the "O" from the letters that I painted for her room that spell out "Olivia", the pink outfit that she wore, a framed portion of Psalm 139 that was given to us at one of our baby showers, a Willow Tree statue of a mom, dad, and little baby that my Aunt Allison gave to us in the hospital, and one of the blankets from Olivia's crib bedding. Whew! I think that about covers it.

These are the bookmarks that I made for her funeral. I made them on the computer (obviously..), and we had them printed and laminated at office max... I did the edges, Brit cut the ribbon and my mom tied all the bows. I wanted people to have more of a keepsake to remember Olivia rather than just a paper program. They turned out prettier than I thought they were going to.

Front...

Back... (That's her foot and handprint on the bottom)

Both of Olivia's Grandpas were her pall bearers, even though her little casket was so tiny and light that she probably only needed one person to carry her. It was so sweet to watch how carefully they lifted and walked with her. It was obvious to everyone who watched that they loved their granddaughter!

 

At the cemetary, Father Shane blessed the ground that Olivia was to be buried in, and then Mike said a couple of prayers as well. Then, we passed around a bag of pink baby roses, and everyone placed one on her casket. Kurt and I stood there for a long time after everyone else walked away, just loving and missing our baby girl.

Afterwards, there was a lunch for family at my Grandma's house. A friend of Kurt's mom provided food and desert for us. It was nice to relax and spend time with our families.

My mom took this picture of Kurt and I with Olivia before her service. I think it's beautiful. We did take some pictures of Liv in her casket, but I won't post them here. We are just going to put them in an envelope I think and put them away - even though she looked beautiful, she didn't quite look like HER.. and we don't want to remember her that way. We just didn't want to not take one, and then wish in 20 years that we had. This one is the closest I'll probably come to posting one of those on this blog. I don't like the idea of someone being able to google us and find a picture of our dead baby.

Kurt and I were totally blown away by the number of people who attended Olivia's service. We hadn't talked to many people to let them know when it was going to be, and neither had our parents. There was a much bigger turn out than we had been expecting! It made me so happy - yet another indication that Olivia's life had a huge impact for such a little girl. We are so blessed to have so many people that care about us.

It was such a beautiful day for such a beautiful little girl. We are at peace when we think about Olivia - we love her so much, and we know she is in Heaven waiting for us, where we WILL be with her again. Now, we have our own little guardian angel.

Thanks again to all of you who have been thinking of and praying for us. You have no idea how much it means.


Love,
Betsy

"too beautiful for earth"

Olivia Margaret Miller

 

Our little Olivia was called Home to Jesus on November 23rd, 2009. Kurt and I feel so lucky that we were chosen to be her parents, and we are blessed that we got to spend those three days with her. She might not be here on earth anymore or physically at home with us, but Olivia will always be our baby, our oldest child, and just as much a part of our family as any of our future children may be. She holds a huge part of my heart, and I love her more than I knew it was possible to love anyone or anything. Olivia lived her little life surrounded by Kurt and I (of course), her grandparents, great grandma, aunts, great aunt, and some of the most amazing doctors and nurses that we have ever had the privilege to know. 

We were all touched so much by baby Livie. Kurt and I are very proud parents and want to share the story of Livie's little life with all of you. We are hoping that she will touch all of you as much as she has touched us. The first night we were home from the hospital, I stayed up until 5:00am writing… and when I went to post everything, it all disappeared! So… here’s my second attempt.

On Saturday morning (11/21/2009), the nurses and doctors who came into the room to check on me were extremely kind and let me sleep in. Kurt and I ordered breakfast, and then went down to visit Livie. That day, her billyrubin levels were up, so she was under a phototherapy light (Kurt calls it her tanning bed) and wearing adorable little purple sunglasses.

Livie underneath her phototherapy light

Dr. O’Hanlon came and spoke with us after we had been with Livie for a little while. First, she told us that Olivia had received a lot of blood products over night, platelets, and a blood transfusion. What they were seeing is that it was working! She had been “oozing” blood from her umbilical cord area since she was born, and it stopped, which was a sign that her blood had started clotting. They told us that they were going to keep giving her doses of plasma, platelets, etc. to make sure it all kept working. We were also told that Olivia was breathing up and over her ventilator, which basically means that she was breathing on her own. The doctor told us that every once in a while she would give up and let the machine take over for a breath or two, so she still needed to be on her breathing tube.


The doctor told us then, that even though she was moving in the right direction in many ways, there was still one thing that they were extremely concerned about. Olivia had had a brain scan and there was significant bleeding in, and around her brain. Dr. O’Hanlon said that it was causing her brain to shift a little bit to the right side of her head. There was another scan set up for the next morning, and since all of the blood products they were giving her had been working successfully and her blood was clotting, they were hoping that it would work in her brain too, and the bleeding would at least stop getting worse. We were asked to start thinking about what we would like to have happen if in fact the results of the scan showed that the bleeding was getting worse. Draining the blood that had already accumulated was not an option, the neurosurgeons looked at Olivia and said that since she was so tiny and young, draining the blood would just make her even more sick than she already was. Basically we were told that if the blood kept coming, there wouldn’t be anything that they could do.


We spent a little bit more time alone with Olivia, and then went back upstairs to my room. We talked about how we have to be optimistic for our little girl, but we both agreed pretty quickly that if it came down to it, we would not want to keep Livie on life support. I think both of us felt that day like we knew what was going to happen when those test results came back, but we kind of pushed it out of our heads as much as possible.


Kurt and I told our family and friends that they could come visit us that day any time after noon, and we agreed that we wouldn’t tell them the “bad” part of the news that we received.


We wanted our families to be able to visit Olivia and feel happiness and hope when they looked at her. No one deserves to live their entire life surrounded by people who are sad for them. We wanted our parents, sisters, and my grandma (the only people who were allowed into the NICU) enjoy their time with Olivia. Besides, we had no idea what the results of the scan would really tell us the next day, and we figured that there was no reason to alarm everyone and send them all into a panic for no reason.
The rest of Saturday was truly a wonderful day. Olivia’s grandparents and great grandma ‘Nore got to spend some quality time with her. Our sisters got to see Livie for the very first time, and I am SO glad they were allowed into the NICU. Originally, the nurses said only parents and grandparents were allowed in, but they were nice enough to give Abbie and Jordynn a “one time pass” to visit her. I think we all would have been pretty upset if they had never gotten to meet their little niece.


We received visits that day from my Aunt Allison and family friend Donna, Kurt’s good friend Dave and his girlfriend Lindsay, and my friends Catelyn, Abigail, Laura, Alysha and Kristen. Our pastor, Mike Wenig, also visited us. Kurt’s parents gave us beautiful flowers, and my mom bought me pajamas and a robe & slippers so that I could change out of the horrible green hospital gown that I’d been wearing for 24 hours. My family brought us candy and a Christmas tree ornament for Olivia as well. I was also given a beautiful “mom” necklace that came with a poem that reads “A mother holds her child’s hand for a short while and their heart forever”. I loved it at the time, but I had no idea how meaningful those words would become over the next day or so.



It was so nice to spend the day enjoying the birth of Olivia with our family and friends. I guess in a way it made us feel more like we were in the middle of a “normal” situation. Everyone was laughing together and talking about how adorable our little daughter was, and finally not talking so much about Olivia’s medical issues. We were able to have a short window of time where people brought us “congratulations” flowers and cards, instead of ones that meant “sorry for your loss”. I’m so glad we were all able to spend that day together.


Kurt and I got to change Olivia’s diaper that day! I don’t think that’s something that is necessarily on the list of things that new parents are excited to start doing, but we were basically overjoyed when Livie’s nurse asked if we wanted to change her. I had mentioned to Kurt that I was feeling upset because I hadn’t gotten to do any “mommy” things. I didn’t get to hold her when she was born like I had imagined so many times before, and even though Kurt got to watch her get cleaned up and go with her down to the NICU on that first day, he didn’t get to hold her either, or cut the umbilical cord like I know he had been looking forward to. Simply changing her helped us feel more like “parents”.

Daddy Changing Livie's Diaper

We woke up the next morning, and I was just about to take a shower when Kerin, Olivia’s daytime nurse called up to our room to let us know that the results of Olivia’s brain scan were back and Dr. O’Hanlon would like us to come down to the NICU.

The bleeding in Olivia’s brain had gotten significantly worse, and her brain was shifted even more over to the right side. In addition to this, they found high levels of acid in her blood. We were told that when brain cells break down and die, they release acid into the blood stream. Once this happens, there is no way to remove the acid. Kurt and I both knew what this meant, but when Dr. O’Hanlon said, “What she’s trying to tell us… is that she’s dying” I could feel both of our hearts break at the same time. She told us that what they were doing for Olivia already could keep her alive for days, or even longer, but that there would be a point where they would have to use things like chest compressions and increase support to keep her alive. We told the doctor without hesitation that there was no way we wanted to prolong anything. Ultimately, it would only cause Olivia to suffer worse than she already was, it would cause more suffering for Kurt and I (and our families), and it would create extra work for the NICU team because they would be basically just working toward a goal that was unattainable. Dr. O’Hanlon said that there was a small chance that Olivia could make it through this and survive. But that’s basically all it would amount to – surviving. She would not be able to live. Originally, they were saying that she would have brain damage, but they weren’t sure how much. They said it could be as minimal as a developmental disability, or mild cerebral palsy. Now, after the results from this scan, the doctor was telling us that IF she survived, she would have extreme mental retardation. She wouldn’t ever be able to know who we were, or who anyone was, and she would need so much medical attention that we would not be able to care for her ourselves. The choice that we made was not for ourselves, it was for our little Olivia. She was far too precious and perfect to be put through the pain of being hooked up to tubes, wires and cords for years. We felt that keeping her hooked up to her machines, even for days, would be too long. She was telling us that she was dying, God was calling her home, and we knew that we needed to let Him take over completely.


We discussed everything that would happen with Dr. O'Hanlon and the NICU nurses, and one of them showed us the "transition room" where we would get to spend Olivia's final minutes. It's a nice room down the hall from Olivia's room in the NICU, it has couches and chairs, a TV and CD player, blankets and pillows... basically anything that's needed to be comfortable.


Then, Dr. O’Hanlon said, “You haven’t gotten to hold her yet, have you? I want you to hold her.” I think I just about lost it at that point. I guess I had kind of thought that I wouldn’t ever be able to hold my baby. They moved the big rocking chair over close to Olivia’s little bed, and a team of a few nurses wrapped her in a blanket, and worked with all of her cords and tubes to get her into my arms. Holding Olivia for the first time was the most amazing feeling in the world. I sat here for a few minutes trying to put that feeling into words, and it is completely impossible. She was so warm and snuggly. She looked so sweet in her little hat (we got to bring her hats from home; she was wearing a pink one that we picked out). I could have sat in that rocking chair holding her forever.

Mommy holding Livie for the first time

While I was holding her, the chaplain that we had asked for arrived. She asked us if we wanted to have Olivia baptized. I got to hold my little girl while the chaplain poured holy water into a tiny shell (a symbol of baptism), and used the shell to baptize Olivia Margaret as a child of the Lord.

 

Olivia Margaret's Baptism

Then it was time for Daddy to hold his baby girl. I think I might have gotten more emotional while I watched Kurt hold her than I did when I got to hold her myself. He was so gentle with her, and the love between them was so obvious. I’ve said this already, but he is truly the best daddy that any little girl could ever hope to have, or that any mother could want for her child.

Daddy and his Little Girl

We spent a little bit more time holding Olivia, and then we went back up to my room. We were assured that we had more than enough time to eat (we hadn’t even had breakfast yet), take a shower, call our families, etc. I had been pretty strong and hadn’t cried (not that I can remember anyway) while we were in the NICU with Olivia, but as soon as I called my mom, I just lost it. I don’t even know if I was speaking in complete sentences, but I remember that we were both crying extremely hard. Kurt left to walk Olivia’s formal name change papers over to the front desk at Children’s. Since we aren’t married yet, all of her paperwork had my last name on it, and we had just filled out forms the night before with someone from the birth certificate office that would allow us to legally change her name to Miller. They told us that it would become effective immediately as soon as he physically took it himself to the office. We wanted to get it done as soon as possible, so he called his parents while he walked over there. We let them all know exactly what was going on, told them that they should come up to the hospital as soon as they were ready.

Before I was even out of the shower, my Grandma and Aunt Nancy arrived. Within an hour or so, both of our families were there. We spent a good amount of time just hugging each other, and then Kurt and I went back down to see Olivia. When we got there, she had a little pink bow in her hair! She looked SO cute! Just like a little princess. Our pastor had arrived at the hospital right before we left the room, so he came to the NICU with us and met Olivia. She held his hand, he read us some scriptures and verses, and then we all said a prayer for Olivia. Kerin, Olivia’s daytime nurse even asked if she could pray with us, so she stood in the circle too. Honestly, one of my favorite parts of that day (I know, that sounds weird) was Kerin asking if she could pray with us too. I thought it was so beautiful that she cared enough about Olivia to ask to be a part of that. It showed me that NICU nurses aren't just there because it's their job to be.

Livie's new pink hair bow! So pretty!

Olivia’s grandparents got to come visit her again, too. I am so thankful that everyone got to spend so much time with her. They were only allowed in two at a time, so we went back and forth between the NICU and our room to get our parents and my grandma and bring them down to visit Livie. We took lots of pictures of them with her, and I’m SO glad we did!

At 4:30, our photographer arrived. The nurses in the NICU had given me a brochure earlier in the day for a foundation called Now I Lay Me Down To Sleep. NILMDTS has 7,000 photographers around the United States and in 25 countries. At the family’s request, a NILMDTS affiliated professional photographer who has their own studio will come to your hospital or hospice location and do a private portrait session. The service is completely free to the family. Our photographer Andrea (a.lynn photography) took pictures of Olivia by herself, of each of us holding her, and of us together as a family. The session took about 45 minutes, and the pictures will be mailed to us in about 4 weeks on a disc. Once we have the disc the pictures are ours, and we can print as many as we want! I am SO thankful for this. I had spent a pretty considerable amount of time researching infant photographers here in town, and hers was actually one of the websites that I looked at. She is extremely talented, and I can’t wait to see how they turned out. I had been so looking forward to getting Livie’s portraits taken. We are so happy that we were still able to have this opportunity, even though it wasn’t under the circumstances that we had been imagining. I will definitely post these pictures as SOON as we get our disc in the mail!

Perfect Family

After picture time, Kurt and I got to give Olivia a bath! I can’t even put into words how happy this made us. It felt so good to be doing things that “normal” parents get to do. We lifted her up and put towels underneath her, and gave her a sponge bath with washcloths and Johnson & Johnson baby wash. She was so cute, and kept kicking her arms and legs around and opening her eyes when we’d touch her with the water. We got ONE picture of her with her eye partly open – I wish we had been able to get one with them open all the way, but as soon as the flash lit up on my camera she would shut her little eyelids. After we washed her hair, I got to put her bow back in myself. Even though it only took a few seconds, I will remember it forever, because mothers dream of doing their little girls hair. I’m so glad I asked if I could be the one to put it back in. Then, we put her diaper on, and both of us dressed her in her little pink outfit that said “Thank heaven for little girls”.

Bathtime for Livie

Daddy Kissing Livie, getting her to open her little eyes!

Olivia's brand new outfit! Preemie size and still too big!

Once she was all dressed up and pretty, the whole family got to come see Olivia, even her Aunts, Abbie and Jordynn, and her Great Aunt Mary. I’m really glad that Aunt Mary had the opportunity to spend some time with Olivia. We only wish that ALL of our extended family could have somehow been able to be there on this special day. After everyone got to spend some time with Livie, Kurt and I had a few minutes with her alone, and then we asked Heidi, her night time nurse to get Dr. O’Hanlon so that we could begin the process of taking Olivia off of her life support.

Everything was unhooked, and we got to see our precious baby girl dressed up in her pretty outfit without any tubes. We obviously knew how pretty she was already, but seeing her without all of those lines was amazing. She was gorgeous. I got to wrap her up in her blankets (one that the hospital gave us, and a quilt that my sister made for Olivia and gave to me in the hospital the day she was born), and carry her myself to the transition room. Kurt and I spent time alone with her first, and one of the nurses take pictures of us with her. Then, Kurt went to go get our family so that they could share part of this experience with us.

Mommy getting ready to carry Liv to the transition room

In the loving arms of Mommy and Daddy

They all came in, and each person got to hold Olivia and look at her beautiful, perfect face. We are so grateful that all of them got to have an opportunity to hold her, because we were the only ones that were allowed to in the NICU. It was an emotional time to say the least. Everyone took turns holding Livie, and alternating between laughing and crying.

Livie and Grandma Debbie

Olivia and Grandma Sue

Grandpa Craig kissing Livie

Grandpa Rich holding Livie Beans

Great Grandma 'Nore holding Olivia

Aunt Abbie and Livie

Aunt Jordynn Holding little Livie

Great Aunt Mary and Olivia

Everyone left the room, and Kurt and I got to spend the last few minutes of Olivia’s earthly life alone with her. We spent this time really enjoying the beauty of our daughter. Kurt sang to her, and put on a puppet show for her with her tiger puppet and Froggy stuffed animal that Kurt had brought from home for her when he had gone to shower and change the day before -- It was one of the sweetest things I’ve ever watched. We also took turns reading to her from a children’s book. At one point, Olivia hadn’t been breathing for a little while and we called the nurse in to check her. She listened to Olivia’s heart with a tiny pink stethoscope. Her heart was still beating, but it was definitely slowing down.

Olivia passed away peacefully in the loving arms of both of her parents. We aren’t sure when exactly she died -- because since she hadn’t been breathing for a bit, we couldn’t tell. I’m glad for this, and we wouldn’t have it any other way. In all, she lived for about an hour and 45 minutes to 2 hours off of her ventilator. This time, Kurt wrapped her up and carried her back down the hall to her little bed in the NICU. Kissing her Olivia’s little forehead and walking away from her bed was the worst, and hardest thing we’ve ever had to do. I know there are no words that can even describe that kind of pain, but even if there were I wouldn’t try to describe it because I wouldn’t want anyone else to even have to begin to know what it feels like.



When we came out of the NICU, Kurt’s mom and both of my parents were still there. They spent a little bit of time with us in our rooms, and then they went home. I think they had been at the hospital for about 12 or 13 hours with us – it had been a LONG day.

Olivia’s nurse, Heidi, came up to our room an hour or so later to let us know that the funeral home had already come to get Livie. She also gave us a collection of Olivia’s things. The NICU put together a “memory box” for us. In it were 4 sets of Olivia’s foot and handprints (Kurt got to help the nurse make these earlier in the day before bath time). We gave one to each set of grandparents, Great Grandma ‘Nore, and kept one for ourselves. We also got a lock of her hair, a card with all of Livie’s measurements written down, her little pink outfit and blankies that she used, and a bag stuffed full of all of her “hospital things”. We got to keep all of her leads and cords, the purple sunglasses that she wore under her phototherapy light, the little bow that she wore in her hair, the baby wash and baby lotion that we used during bath time, a few diapers so that we could remember how TINY they were, Livie’s hospital bracelets, and even the thermometer that we used to take her temperature. Later, Kurt and I added our own hospital bracelets, the little bottle of holy water and shell that were used during her baptism, and the hats that Olivia got to wear.

The nurses could not have been more thorough and wonderful. If the next time we have a child we happen to still live in Omaha, I wouldn’t go anywhere else but Methodist for my doctor, because I want to make sure that in the event of another complication, we will be able to have access to the NICU at Children’s. I really can’t say enough good things about those women (and men). I know that every time Kurt and I were unable to be at Olivia’s bedside, her nurses were right there. They were not only her care givers, they were her love givers. It was very obvious that they loved Olivia by the way they took care of her. She had two nurses, one that took care of her during the day, and one that took care of her during the night. On Livie’s last day, the day nurse came and visited us in my hospital room when her shift was over. I have always been told that there are angels among us, and I really believe that these women are some of them – I have NO idea how the heck they do their jobs, but I am so thankful that they do. Without them and Dr. O’Hanlon, we would not have had the three precious and wonderful days that we got to spend with our Olivia.

Kurt and I are so thankful for all of our family and friends. I am completely blown away by the amount of support that we have received over the past week. The number of phone calls, messages, e-mails, flowers, gifts, comments, and cards that we have received is amazing – We have so many more people in our lives that genuinely care about us than we ever realized. We will forever be grateful to all of you.

“An angel with the book of life wrote down our baby’s birth, and whispered as she shut the book too beautiful for earth”.