obituary

Sophia's obituary ran in my home town newspaper...

http://www.dailygate.com/articles/2011/02/08/obituaries/doc4d51a38c6283c481718332.txt

I'm pasting it here now in case it goes away (and making some changes that we missed)...

Sophia Rose Dinkel

CENTENNIAL, Colo. –– Sophia Rose Dinkel, infant daughter of Aaron and Tristen (Vass) Dinkel of Centennial, Colo., passed away peacefully Wednesday, Jan. 26, 2011, at Presbyterian/St. Luke’s Medical Center, Denver, Colo. She was surrounded and held by family as she was placed in God’s arms.In addition to her parents, she is survived by her maternal grandparents, Steve and Laura Siegrist of Warsaw Ill., and Chris and Tiffany Vass of Hamilton, Ill.; paternal grandparents, Jeff and Dianne Dinkel of Forest Park, Ill.; aunts, Megan Vass of Burlington, Courtney (Jason) Yates of Warsaw, Samantha (Kyle) Brees of Clarksville, Tenn.; uncle, Josh Setter of Littleton, Colo.; and cousins, Kamaira of Clarksville, and Bryer and Ellie, both of Warsaw. She was preceded in death by a maternal grandmother, Rosemary Hauk; maternal grandfather, Lawrence Roy; and paternal grandmothers, Ruby Dinkel and Lois Childers.

Memorials may be made to String of Pearls at www.stringofpearlsonline.org/index.html. The organization handled the private service arrangements

my due date

this week has been a little better than the last- as to be expected, that time will help heal. yet tears continue to make their arrival in the most unexpected times. like today in the card aisle in Wal-Mart. if you know me and my mom- we are card people. we love buying and sending cards to each other for not only holidays but anything in between. today i was there contemplating buying v-day cards and the tears came. the ones that reminded me that i was looking forward to sending cards to sophia's grandma from her. the ones that reminded me i was looking forward to getting aj cards from his daughter. yes i know i could still send them, but it is different now.

i hate when tears sneak up on you and get you when you least expect it- about things you forgot about or don't expect to make you that sad. it has been these little things this week that have got me starting a cryfest. my sweet niece- Kami- who never met sophia but saw all kinds of pictures of her said- "i miss baby sophia. i hope God teaches her to crawl and walk". yep. that got me good. that a sweet little 3 year old even misses my beautiful daughter. really if i sit and think about it at all in depth i cry. or if i find that i haven't thought about her all day- i cry- feeling bad that i haven't thought of her. it is weird when you have never been a parent and you lose your first child. especially one that you only got to spend a short time with, as i never have really felt like a mommy. yes i know i am a mommy now, but when you only get to hold a child for a short time that you are told is yours, it still doesn't feel real. my heart aches for her and tells me i am her mommy, but my empty arms make it hard to feel real. my life has completely changed, yet it hasn't. my house doesn't look any different, although we have pictures around of her. my routine isn't going to be different. i will be going back to work full time and my time is still my time. i was soooo ready for my life to revolve around a little baby's schedule and needs. i was ready for that sacrifice- well as much as anyone can be... so living my life in the day to day that very much resembles the time before i was a mommy makes it hard. i find that i constantly need to either look at her picture or wear one of my pieces of jewelry that says sophia on it every day. it helps me feel closer to her and feel more like a mommy- like this really all did happen and she was actually here.

i think my tears were ready to come today as it was suppose to be my due date. it is the last of the suppose to be happening type dates (like monday was the day i was suppose to be induced), and i am ready to be past those. they are painful reminders of what was suppose to be. today reminds me of the joy i felt back in june when we went to our first dr appt to confirm the pregnancy and got today as our due date. the one where aj was so proud of how quick he got me pregnant when we had just started trying. the time where we felt endless joy and hope about this baby and blessed to have gotten pregnant so quickly. where we were still really excited and had no reason to think otherwise. i was more worried the baby would be born on valentines day and i didn't want he or she to share that holiday with their birth. we joked we would have birthday parties on valentines day and charge the parents to baby sit their kids. oh! how little did i know i would have much bigger worries when we found out our news in September. that no pregnancy ever again would be carefree for us. we will now always be cautious and weary of the fact that babies do not always come home with you. bad things can and do happen to people. i hope that we can at least enjoy future pregnancies a little more than this one... even if that means just the joy of getting to have a baby shower and when people comment on my tummy in public i don't have to fake enthusiasm about the baby coming. the funny part is that lately i find myself worried and anxious for those of my friends that are pregnant right now- which are a lot of them. i find myself praying harder than i ever have for their babies- that they will be healthy and that their pregnancy/birth goes well. i want no one to ever have to go through what we have. when my friend gave birth in december i found myself holding my breath till i knew he had arrived and all was well. i have officially become the pregnancy prayer warrior through all this.

yesterday we boxed up the nursery and most of my maternity clothes. no- i don't quite fit in my pre-pregnancy clothes, but maternity clothes make me sad. it reminds me of the time i still felt my daughter kicking and moving and had a cute little belly to carry around. i was thinking the other day how thankful i am for all the ultrasounds we had to have- as i got to see Sophia do all the cute little baby things- like sucking and playing that i didn't get to see her do when she came out. we got to know her best during those times. she was lively and active when i was carrying her inside me and i am thankful for those memories. anyway- so boxing up the baby stuff wasn't as bad as one would expect. i just put on my game face and did it. i couldn't let myself think about it too much, or it wouldn't get done. i had to just detach and do. i'm glad aj was around, as he hadn't really looked at the baby stuff when i was pregnant so when he helped put it away we got to smile over how cute it all was. as some people got us baby stuff when i was pregnant even though i didn't have baby showers, we have a good little stock for our next baby and although some of it may make us sad when we get it out again- most of it is unisex and we don't have "sophia memories" attached to it. anything that was hers (like knit hats, italian booties, blankets made for her specifically)- we put in her own box of memories. that will stay out on a shelf for us to pull out anytime we want to go through it. we will try again for another baby by the end of the year, as we both are very ready to be parents and it does take a good amount of time to grow them :o) so we know that this stuff is packed away for now, but not forever.

wednesday i started working out again- well so far i am only allowed to walk. so i have been going to the gym with friends to walk and also lift some free weights for my arms. gives me something to do and something to start working on getting my body back. i have lost 20 lbs since giving birth- now i just need to lose about 20 more. i was hoping to breastfeed to help get this weight off- but since i won't be doing that, i have to do it the old-fashioned way- eating right and working out. bummer.

thanks again to everyone who had brought, sent and/or made us meals. they have been great to not have to worry about cooking or more the work of cleaning up after cooking. just wanted to give you all another thank you again as i have someone dropping off stuff here in a bit from our church's care team. thank you Deer Creek Church for supporting us so well at this time. God certainly knew what was in store for us when he lead us straight to you when we moved out here.

lovingly- tristen

our first real outing

so thursday we went and got to spend some extra time with Sophia and say our final goodbye. this was something we originally had decided we wouldn't do, as we didn't want to see her and ruin any memories we had with her at the hospital (with her looking more discolored). but the more we thought about it- the more i kept thinking- gosh who could turn down holding their child more? my arms were aching to hold her again. and boy are we both so very glad we decided to do this. she actually looked better than she did at the hospital. plus- we weren't sleep deprived from being up for over 24 hours and feeling rushed to spend what little time we had with our daughter. and i hadn't just given birth.

we were able to walk in there clear headed (as much as you can be after you lose a child) and focused. i had spent time in the week since last seeing her thinking how i hadn't looked at all her details because i was just trying to take in the fact she was mine and how pretty she was. so this time i spent time taking in her details- her little finger nails, her eye lashes, her soft red hair, her small little chin, her wrinkly feet, her small arms and legs. we spent time crying over how beautiful she is and how cute of kids we make. how she would have been such a joy to raise- a spunky red head who was small but would have had a big personality. how blessed we were that with all her deformities, she was so perfect looking on the outside. (back when we bathed her after her birth we had used a certain scented lotion- and everything she wore or was wrapped in smells like it still) so i put that lotion on that morning, so that it continues to be a smell that when we smell it- we think of her. (thank you String of Pearls for this idea) when i want to think of her or feel close to her i can wear this lotion and think of Sophia.

another idea that we took away from SOP is to put Sophia's foot prints in our bible when she was born. this i liked, but didn't realize its importance till we went to church this morning. i knew church was going to be hard- as worship music has always been such an important thing to me. and when i was pregnant it could make me cry on a fairly consistent basis after we found out Sophia's risks. so today i knew i would be tearful- and i was. i couldn't sing, but just sat there and let other's lift up their voices for me and let it surround me like a warm comfortable blanket. then as we sat down to listen to Duane's message, all i could think was- wow, last time i was here i was very pregnant and i should be sitting her with a newborn in my arms today. instead i have empty arms and an empty belly. my cup feels very empty as well... i feel like i have nothing to give right now. then i opened my bible- and saw her foot prints and touched them and thought- well at least i have part of her here with me. it helped me regroup and make it through the rest of the service.

aaron and i did have a good day on saturday- we went on our first date since everything happened. a friend had given us seats to the local NHL team- the Avalanche- game. so we went to that game and then went out for sushi afterward. generally it was a good time, i could have an adult drink and some raw fish, neither i could have for the past 9 months. it was nice to laugh and enjoy some time out of the house with my husband. yet- i kept thinking that we shouldn't be here, we should be at home taking care of a newborn baby, i would much rather be sleep deprived and exhausted but blissfully happy to have my daughter at my side. but i tried focusing instead on the fact that i get to spend more time with my husband, strengthening our marriage now. i'm sure everyone experiences these feelings after loss- where you are in public and just want to scream- please be nice to me, don't you know my whole world has crashed? don't you know my daughter just died? it feels weird to be in public where life continues as before for everyone around you. and you feel changed. you feel different and people should notice. but they don't. they can't. and in reality you wouldn't want everyone to know. it's nice to be just another face in the crowd where people don't expect you to be sad.

well this week aaron goes back to work- please pray he doesn't get any calls with patients that are pregnant or sick babies (those were hard when i was pregnant and will be hard for awhile yet). this week i will be going through the nursery- returning stuff that we don't need (preemie sized clothes or diaper cream that will expire before i would use it) and packing up baby stuff to store for our next child. we will turn the nursery back in to a guest room till we are ready to try for a baby again. please pray for our continued pain- we both are really wanting our daughter back right now and missing her so much. we are also going to get a dog this week- something we were going to do before baby but never did. it will be nice to have something to pour this love we had saved up in to, give our attention to and make our quiet house not so quiet. we also booked our vacation- we are going to Cancun in a few weeks- to relax on a beach, drink, eat and generally get away. i'm excited to just get away and regroup before i officially go back to work the beginning of march. anyone have any really good book recommendations? (i like a good fiction)

taking it day by day- t.

1 week

we are one week out. funny how time will be marked by her arrival from now on. our lives before her and our lives after. oh how long a road we have...

anyway. i wanted to share some news that gave us the ability to take a deep breath and help with our healing process. we had talked with our doctor on monday, as she had said- whenever you need reassurance that what you did was the right thing you call me. well in days since Sophia's arrival we have both had moments where we asked- did we do all we could? should we have intubated her? should we have pushed for them to do more? (medically we can both reason away why we did what we did, and that was what all the doctors recommended) but in our hearts we kept doubting... well on monday she gave us a pep talk and encouraged us that just by choosing to carry through with the pregnancy we gave her more of a chance than most people do. and that if we had chosen to do anything then the little time she did have we might have wasted on having her poked and proded. this gave us some gentle reassurance we did the right thing.

BUT- then on tuesday she went and reviewed the examination that was done on Sophia later that day. (we have her enrolled in research at The Skeletal Dysplasia Center at Cedar Sinai- so they needed some post death x-rays and such). when she talked with the pathologist to examined her- it was revealed that Sophia had multiple things wrong with her. not only was her chest small, but her tongue was attached to the bottom of her jaw and her trachea (the tube you breath through) was completely blocked off (it was malformed). so even if we had wanted to intubate her (give her a breathing tube) they wouldn't have been able to. this also explains why i kept building up the amniotic fluid- due to her not being able to swallow it. God made that decision for us when he made her, and took the responsibility of deciding what should be done away from us. such a relief of the burden to have to live with what kind of decision you made to save your child. knowing we made the best decision possible- not doing anything to her and just spending time holding her.

today may be the one week mark from when i got to meet and hold my daughter, but i give thanks.

-thanks that God is all knowing and in control. that he not only made my daughter perfect in her own way, but he has her and is loving on her so much better than i ever could.

-i am thankful i got to carry her as long as i did and get to know her that way.

-i am thankful for our family- that they could meet her and be there to support us then and they continue now.

-i am thankful they continue to show her pictures and are so proud of who she was.

-i am thankful for all the cards/packages we have received from people we know well and people we don't know well.

-i am thankful for people saying they will never forget my beautiful daughter.... because i know i never will.

today i am choosing to be thankful. it may not be an easy choice, as it is easier to sit on my couch in my tears and i may not make this choice many days, but i do today. i want to be thankful for where i am today, even in my pain.

in His grace-t

still here

well we are still here. it is amazing how your heart can feel so completely broken and the ache is so real you feel actual pain, but you are still alive. you still awake each day and the sun still shines on you. day by day we are surviving this. there are bad days and better days. the bad have out numbered the good so far, but i know that will change someday.

SOMEDAY- such a foreign concept right now. someday... we won't hurt so bad, we will not miss her so much, we will laugh and have fun again, we will have more children, we will see her again.... but for now i find my self crying and thinking- damn this hurts so bad. i want my baby back. NOW! i don't want to be a good example of faith or need all these people praying for me. i don't want to have to keep a picture of my baby out at all times because i need to look at it all the time to feel near to my baby. i don't want to need people to bring us meals because my pain immobilizes me. i don't want to keep the door to the nursery closed because it hurts too much to look in. i don't want to feel gas in my stomach and do a double take thinking it is the baby kicking, only to realize i'm not pregnant any more. i don't want to put ice packs on my chest or drink tons of this special tea to try and help keep me from the pain of my milk (that i am not using to feed my baby) coming in. but i do....

today is a bad day obviously. i have to write as i can't talk long enough without tears taking over. today i was set off by how sweet my loving husband has been. he has held me when i needed to be held, left me alone when i just needed to weep, opened the blinds when i wanted to sit in darkness, fetched me ice packs, kissed me so sincerely, talked of his daughter so lovingly, told me how much he loves me a million times. he would have been the best father to raise Sophia- telling her no matter what her differences were that she was beautiful and the most amazing little girl. he is still the best father to her and loves her more than she could handle. and he is the most amazing husband to me and i wouldn't want to go through this with anyone but him. he is the love of my life and my partner forever.

i want to thank everyone for the meals they are dropping off... they are a huge help when i don't want to get off the couch to do anything. so thank you, please consider this your thank you card.

a fellow mother to a baby that has gone to heaven recommended this site--> http://mollypiper.com/2008/03/how-to-help-your-grieving-friend/ and i can't stop reading it, as it all is so close to my thoughts and pain. the link above is how to support someone in grief. but if you go to read the links about Felicity on the right, it is so good to read. she is very articulate of the pain that goes along with losing a child. i'm comforted by reading about other mothers and the process it is to recover and live after a loss like this.

just wanted to let you know i/we have gotten and read all your messages, emails, texts and listened to your voicemails. thank you for your thoughts prayers and love. we may not always respond but appreciate knowing you care.

-tristen

Sophia's life

Sophia Rose Dinkel was born at 2:40 am on 1-26-11, weighing 5lbs 2.8oz, 15" long, after 24 hours of labor and 3 hours of pushing by her momma. She tolerated labor well, with a good heart rate as long as her mommy wore oxygen most of the time. She came out not breathing or crying, all though she did have a heart rate. The Neonatologist took her and deep suctioned her but still couldn't get her to start breathing. She did look like her diagnosis of Achondrogenesis Type II, and due to that they encouraged us not to pursue any further therapies at this time, as she didn't appear to have enough lung tissue to support life. She did open one eye partly and let out a few little gasps, and tried to make a cry at one point, but overall she came out very peaceful and never seemed to be fighting to stay in this world. God took her as soon as she was born. She passed away sometime while being held and at 3:35 am when we checked for a heartbeat there was none to be found.

We were able to spend some very special time with her.... she was wrapped up in her blanket and we put a cute little knit hat on her. Her daddy held her while her mommy was being fixed up and he let our entire family hold her as well. There were many tears shed over how absolutely beautiful she was and how cute her little arms and legs were. She is the most beautiful baby I have ever met in my life. She had a full head of hair that was short, reddish-brown and curly and so very very soft. She had long fingers and turned in but perfectly shaped little feet. Her daddy and nana gave her a bath to clean her all up. Then her mommy and grandma lotioned her up and put on one of her many outfits she wore. She smelled and looked like a little princess. Everyone took turns holding her, talking to her, kissing her and loving on her. Our pastor- Duane came and baptized Sophia and provided us with some support and love. We also took some time to capture Sophia's footprints and hand prints on some memento's and in our bibles.

We do find peace and comfort in the promise that God has her and we will see her again someday. But our hearts are aching in a way not known was possible right now. It all felt too quick and I don't think you could ever feel like any amount of time is enough to spend with your child. It all seemed to pass too quickly and next thing we knew we had to hand over our baby to not see her again on earth. This is by far the hardest thing either of us have ever had to do in our lives. I could never have enough time to kiss every part of her or coo over how adorable and perfect she looked. She will always have a special part in our hearts and will have touched more lives than we thought possible. We have peace that God was in control of this and has a plan for this, and he will heal our hearts in time.

Just one last thought- please do not be afraid to bring up Sophia to us. So many families experience that after the loss of a child- where people are afraid to bring it up and simply do not talk of the child that passed. We do not want to pretend she didn't exist or ignore the fact she was born. We rejoice that we were able to have her and meet her and love her and she will always be our little girl. We may not want to dwell in the pain of the loss, but we are not afraid to talk about her or show you pictures.

Luckily this whole time we were blessed to have had The String of Pearls Organization (http://stringofpearlsonline.org/) helping support us in every possible way (with momento's and emotional support) and helping us arrange to have Now I Lay Me Down to Sleep Organization (http://www.nowilaymedowntosleep.org/) provide us with a free photographer to capture a lot of our time with her. Our Deepest thanks goes to both organizations for helping. If you want to donate in any way- I would encourage you to do it to these organizations.

We will not be having a funeral service for Sophia. We are having her cremated and will do our own special ceremony for her sometime in the mountains when we are ready.

Thank you to everyone for your prayers/thoughts/gifts/food during this entire process. Not only has it blessed us and helped us in such big ways, but it has really taught us the meaning of community. We have grown so much through this. We can't say thank you enough.

all our love- tristen, aaron and our daughter in heaven- sophia

Sophia Rose - A Beautiful Baby

This is Dianne, AJ's mom. AJ and Tristen are getting some much needed rest and they had asked me to update the blog until they are able to share with you.

Sophia Rose was born at 2:40 this morning, January 26, 2011. She was unable to breathe and peacefully went to her heavenly father where she will forever be in the arms of Jesus. She was an absolutely beautiful little girl and Tristen and AJ and their families were able to spend a little time loving her.

AJ & Tristen appreciate your prayers as you have been with them on their journey as parents of Sophia Rose. I know that they will update you later with more.

Thank you for your continued prayers for them.