"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”.