Days 24, 28 and 30: Artwork, Special Place, and Growth

24. Artwork: Have you created a piece of artwork in the wake of your baby’s death? Or maybe someone has given you some artwork to honour your baby? Please feel welcome to share links to your own website or to other artists.

Like I mentioned in my last post, Cliff and I visited Faith's Lodge a few months after Patricia's death. One of the traditions there is the creation of a heartstone. These stones are placed on the property in remembrance of our precious babies. I have never been a very artistic person, but I love the stone I made for Patricia.

We would love to visit again someday and find her stone.

28. Special Place: This could be your baby’s place of rest. If they do not have a grave, maybe you have a special place that you associate with your baby. A place you go to, to remember them. Where is it? Why did you choose that particular place?

Patricia's special place is wherever our family is. We chose cremation rather than burial because we don't know where our future will take us and I couldn't bear the thought of leaving her behind. Wherever we end up, her special place will be with us.

About 14 weeks into my pregnancy with Patricia

30. Growth: Do you believe you have grown or are growing as a person since the loss of your precious baby? How? How do you see other people now? How do you see the world? Do you believe you have a higher purpose? Do you believe your baby had a higher purpose?

Despite my occasional low days when I just feel like giving up, I do have hope for the future. Whether it is true or not, loss moms tend to believe we cherish and appreciate our living children more than parents who have not lost a child. Our perspectives are forever changed. I believe my experience as Patricia's mother helps me every day as Anna's mother. Our daughter's death did not have a purpose, but her life had a purpose. As I described earlier in the month, our family is Patricia's legacy and we are forever changed and made stronger by the love we have for her.

About 24 weeks into my pregnancy with Patricia

Days 19 and 23: Support and Tattoos/Jewelry

19. Support: Share about what has been the best support for you since the loss of your baby. Maybe it is a special friend or family member? A pet? An organization? What have they done for you? Where would you be without them?

When Patricia died, I immediately reached out online. Sometimes I would just search Google for "stillbirth" or "stillbirth support" and click link after link after link. Some loss mamas on one forum I joined told me about a place called Faith's Lodge. Faith's Lodge is a place in Wisconsin where parents and families experiencing the serious illness or loss of a child can gather together in strength and remembrance. There are weeks dedicated to stillbirth and infant loss and we visited in June 2012. We had an incredible experience! It was so nice to spend time with people who truly understood what we were going through. We could openly talk about Patricia and hear others' stories without fear of making people uncomfortable or getting potentially hurtful responses. Most of all, it was an absolute blast. We laughed more that weekend than we had in weeks. We all needed it, and we needed to do it around other people with common experiences because no one felt guilty or like we loved our children any less. It was especially good for my husband because he needed to connect with other dads. These women and I remain connected and many of us have supported each other through subsequent pregnancies.

23. Tattoos/Jewelry: Do you have a piece of jewelry in memory of your baby? Or maybe a tattoo. Please feel welcome to share links too.

I decided to get a piece of jewelry with Patricia's birthstone, an aquamarine, to wear at all times. Two days after she was born, we went out looking. We went to several department stores before heading over to the jewelry store where we purchased our wedding rings. There it was, waiting for us. A white gold ring with a heart surrounding an aquamarine and small hearts on each side with tiny diamonds and delicate scrolling. It is beautiful and dainty, just like she was. Her initials and birth date are inscribed inside. My mom had a remembrance ring made with a tiny pink diamond. Her ring also has Patricia's initials inscribed. 

Anna's First ER Visit

On Monday, our little Anna gave us quite a scare. At 4pm she vomited an entire bottle of milk onto Cliff. (I remember back when she came home from the NICU and she would spit up and I worried she was vomiting. NOPE! This was way worse.) When I got home at 5pm he had calmed her down and gotten her to sleep in our bed. I took her temperature in her ear and it was a little low, between 96.7 and 96.9 degrees over several tries. I let her sleep a bit longer and when she started stirring, I slipped in beside her to see if she would nurse a little bit to get some fluid back in. She did, and we were relieved. She went back to sleep and we grabbed some dinner. She napped longer than usual, so this time when she stirred I decided to give her a bath. What I had read online regarding a low temperature offered similar instruction for if she had a high temperature - a warm bath and warm towels. Plus, she stank!

When I got her in the bath, she was very weak and lethargic, reminiscent of her sleepy newborn days or the hours after her surgery when she was coming out of anesthesia. I also noticed how pale she was. I was then convinced that something was really wrong. After quickly soaping her up and rinsing her off, I picked her up and she vomited all over me. I decided to call the after hours triage for her children's hospital network.

The woman who answered took my information and said a nurse would call within the hour, but probably sooner. However, we had already decided to take her to the ER since were concerned she had contracted a virus that would affect her lungs. We packed overnight bags and headed to the car when the nurse called me back. She didn't seem too concerned since it had only been 3 hours since the first incident, but I realized I forgot to tell the triage woman about Anna's hydrocephalus and VP shunt and when I mentioned this to the nurse, she said to go ahead to the ER at the children's hospital.

If there's one thing we now know about having a VP shunt, it's that vomiting = red tag in triage at the ER. Our minds weren't really considering the possibility of a shunt malfunction because we feared she picked up something over the weekend during her first road trip (more on that later!) but it is true that with infants, vomiting is a telltale sign of a malfunction and we can never be too careful. 

Relieved to see 100% oxygen saturation

At the hospital, Anna vomited again but we were relieved to see she was breathing fine and had a normal temperature. The doctor decided to go ahead with a head CT scan and x-ray to check the shunt placement and ventricle size. At this time Anna was a little alert awake but still very drowsy. She made it through both procedures without making a sound. The CT scan was tough for me and Cliff since we were draped in heavy vests to protect ourselves all the way up to our throats but there we were scanning our precious little baby's head, again, but we know the necessity outweighs the risks.  

Waiting for our next procedure

The scans showed that not only is the shunt in the right place, but her ventricles are even more decompressed than they were at her last MRI in September! We were relieved to rule out a malfunction, but still no answer on the vomiting. The scans showed some fluid behind her left eardrum, which is actually a relief since she had some trouble in that ear during her checkup with the audiologist last week, but it wasn't dark or indicative of an infection. They decided to do a urine culture (by far the worst procedure of the night!) to rule out a UTI. This also came back clear. By that time, Anna had begun to perk up and was demanding to nurse. We did, and she held it down!

Around 10pm we were told we could go home and to follow up with our pediatrician in a week and come back if her symptoms resurfaced. By the time we got her home, Anna was back to her normal self. You'd never know she spent the last few hours in the ER! We are incredibly relieved that this was a false alarm and as sad as we are that Anna had to endure more testing, we know we did what we had to. It is a little daunting to know that we will have to go through that every time she shows sign of illness whether it ends up being a quick stomach virus, a cold, or a bad bottle of milk. However, Anna is a survivor and totally worth the effort!

Days 15 and 16: Wave of Light and Seasons

15. Wave Of Light: Today is October 15th Pregnancy and Infant Loss Remembrance Day. Light a candle at 7pm to help create a continuous wave of light around the world for 24 hours. Photograph your light!

Last year, we decided to start a new tradition for this day. Each year we will light the candle Cliff and I lit at our wedding. It symbolizes our family, which Patricia will always be a part of.

16. Seasons: Share what certain seasons or holidays mean to you now. What season did your baby die in? What season were they conceived/born in? Etc. Do you dread those seasons now? Are they more meaningful to you because of your baby?

This is appropriate because we are entering the Fall season during which, for the last two years, I have been pregnant. It began with Patricia. At Halloween we told our close friends about my pregnancy and at Thanksgiving we told extended family. When I think of Fall events and foods: pumpkin, hot chocolate, and holiday treats, I think of my pregnancies. My pregnancy with Patricia was the happiest time in my life. I was so full of love, joy, and excitement.

She died in the Spring, just after spring break. This year we were in the NICU with Patricia so we were distracted, but next year may be more difficult. She died on a Monday. The weekend before, we had taken a short road trip together, a babymoon in San Antonio to celebrate the new adventure we were embarking upon and enjoy the newly warm weather.

March 24, 2012 -three days before our world came to a stop

Days 10 and 11: Beliefs and Emotional Triggers

10. Beliefs: Do you have a certain belief about what happens to us after we die?

I initially skipped writing about this yesterday because my first instinct when I saw the prompt was "I am so not ready to deal with this yet." However, as I drove home from work yesterday my mind wandered as usual and I realized that in the end, my belief system is quite simple. I believe in a God. I believe he created our world and the living creatures in it. I also believe the only way he actively works in our world is through people who call upon him for wisdom, guidance, and strength. He does not direct life or death or control any other events. He did not direct Patricia's death (or Anna's premature birth), nor could he have prevented either. The world he created progresses and evolves naturally.

I hope there is spiritual world, a Heaven, where Patricia is loved and nurtured, perhaps by her relatives who have left this world. I hope we may one day be joined together again, mother and child. I do not talk to her but to say I love and miss her and wish she were here in the flesh so I could cuddle and kiss her as I do her little sister. Occasionally I see her in my dreams, and she is beautiful.

Me around age 2 - how I often picture Patricia in my dreams

11. Emotional Triggers: What triggers emotions associated with grief for you? Is it the weather? A scent? Photos? Places? Holidays? Words? Certain people?

I have many triggers. A song or TV show on Netflix Cliff and I watched the entirety of during my pregnancy, a Fall Festival we attended when I was pregnant, any mention of death or loss, the sight of a pregnant woman or newborn baby, a wonderful moment with Anna. All of these things bring out my own grief. I don't believe I will ever stop grieving Patricia. I will always have deep love for her in my heart, and grief is the manifestation of that love.

A TV series on Netflix we watched during my pregnancy that will always remind me of Patricia. 

Day 9: Music

9. Music: This might be hard to capture in a photograph so why not post a youtube clip of a piece of music that reminds your of your baby/ies/child/ren. Why this piece of music?

Last month, I wrote about some of the songs that remind me of Patricia and have helped me in my grieving process. The post can be found here.

Days 5, 6, and 7: Memory, Ritual, and You Now

5. Memory: What memory do you have of your child that stands out for you the most. It may be a positive or negative memory. When you think of your child what is the first memory that comes to your mind?

When I think of Patricia, I like to think of how amazing it was to carry her for the seven and a half months that I did. My pregnancy was wonderful. I felt great and never even had a hint of nausea. My husband and I joked that I was the perfect pregnant lady. I never felt more strong, beautiful, or confident. Feeling her kicking was incredible. We loved to put on music and feel her dancing. She loved the Glee soundtrack. When I think of Patricia, I try to think of how happy she made me feel.

Being silly on our babymoon a few days before she died

6. Ritual: Do you have any rituals to help get you through the day? Maybe it is a daily affirmation or prayer. It could be that you light a candle or recite a mantra etc. Do you do anything meaningful on special dates for your baby?

We have Patricia's photos all around our house. On her memory box in the living room, on the refrigerator in the kitchen, and a large collage in the hallway just outside our bedroom. Often I will blow her a kiss as I go in and out of the bedroom. I also like to stop there with Anna and show her Patricia's photos. 

On Anna's due date last year, my husband and I went on a short getaway to Hot Springs, Arkansas. I have always felt more at peace when in nature and we stayed at a wonderful B&B on a lake. It was a healing trip and it was then that we started feeling ready to give Patricia a sibling. On her birthday this year, Anna was still in the NICU so we didn't do anything particularly special. We may do something different every year, depending on what feels right.

On Patricia's due date in May 2012

7. You Now: Where are you in your grief right now? How are you feeling? How far have you come? Are you wrestling with anything? Is your heart heavier or lighter now?

My grief ebbs and flows. Some days, I can remember Patricia and smile. Some days, the memory of her death is like a knife to my heart and I just can't believe how cruel and unfair the world can be. I often have to push aside my grief to get through what I need to with Anna. Our journey with Anna has been very difficult and often my grief over Patricia compounds the pain. In order to be present and engaged with Anna, I have to focus on her future. I don't feel guilty about this because I know if Patricia is a spirit capable of thought and emotion, she does not want me to stop living, and she wants me to be there for her little sister.  I mention Patricia often and tell Anna about her big sister, but I cannot let myself feel the magnitude of pain because it tends to overwhelm me.

Day 4: Legacy

4. Legacy: Do you believe your child left a legacy behind? It could be something very simple but meaningful.

I'll admit it. I had to look up the definition of legacy. I mean, I knew what it means and could have used it in a sentence, but I have a hard time thinking of Patricia as having a legacy. Yes, she changed me and our family, but a legacy? I guess I've never really focused on HOW she changed me. I just know I am not the person I was before her death. 

The dictionary said a legacy is: something that is received from someone who has died. So what have we received? It's hard to put into words, but it all begins with love. From the moment we dreamed of her, Cliff and I loved her. From the moment we saw those two pink lines, we were a family. In planning for her arrival, we pulled on our strengths. I spent hours researching the things we would buy for her, dreaming of the life we would create together. Her daddy (the family chef) checked out stacks of pregnancy cookbooks along with books about baby's first year. Our love for each other grew as the months flew by and the excitement (and my stomach) swelled!

Visiting family in SF during 2nd trimester - so much joy!

Then, we endured what many long-married couples have confirmed to be the most difficult experience for a marriage: the death of a child. We went through a cycle which I now know is common for parents who have lost a baby. We initially clung to each other and never felt stronger. I wanted to spend every moment together because I knew he was the only one who understood what I was feeling. He was the only one who also lost a piece of his self. As the months passed and we began grieving in different ways, it got harder. Struggling with the array of feelings that come naturally with grieving, we had a hard time loving ourselves through the pain and guilt. Why did this happen to us? Did I do something to deserve this? Still, we both loved our family. 

The pure strength of love we held for our family and its future helped us to begin dreaming again. The changes that followed, including the desire to give Patricia siblings and a career change for Cliff, stem from this love. Ultimately, there is no reason or meaning in her death. There is reason in her life, short though it was. 

Our family is Patricia's legacy. 

Day 2: Identity

I missed taking a picture of the sunrise for Day 1. Lately, I find myself running out the door to work late because I have such a hard time pulling myself away from Anna. No matter how late I am, there is always time for a little more milk and a snuggle!

Day 2. Identity: What is your child’s name? Why did you chose that name? What is the meaning of their name? If they were born, what were their birth details. What were their features? Who are they?

We named Patricia after she died. This is because we were "team green" and did not find out whether she was a boy or a girl during my pregnancy. We were considering several names, but chose together to name her in honor of two beloved women. My Grandma is the first Patricia. My husband's grandmother, or Farmor, is the first Kirsten. Patricia Kirsten is named for her wonderful great-grandmothers! My middle name is also Patricia so she has a bit of me as well.

Patricia was born at 31 weeks gestation. She was big for her age and weighed in at 4 lbs, 2 oz. She was 16.5 inches long. She had lots of dark hair like her mother and her father's wide eyes, light eyebrows, and button nose. Her fingers and toes were the most precious I'd seen and are only matched by her little sister's!

Patricia is our firstborn, our beloved daughter, and Anna's big sister. She will always be loved and remembered by her family.