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.

Still no baby

Well, this is A.J. again. They broke Tristen's water at around 1130am and started Pitocen but little Sophia is just too comfortable in there. Tristen is still having contractions and is 100% afaced but the contractions still aren't close enough to push Sophia out. The Doctors aren't concerned yet but are saying that if she holds off for too long we may have to take Tristen to have a C-Section. Tristen has an epidural and is resting comfortably (or as comfortable as she can get). The family is still here supporting us and I'm trying not to go crazy in this room (most of you know I have ADD and don't do sitting in one area for a long time too well). I'll try and keep everyone posted again. Our Doctor thinks Tristen will be in active labor by around 0100-0230hrs. We continue to pray and hope for God to come through and if He has to take Sophia before we would like we'll still praise Him. Thanks to everyone for the support. I truly cannot express just how amazing the outpouring of support has been. I have been able to see Jesus at work in this with everyone's help. I am honestly at a loss for words...and most of you know that doesn't happen to me too often. I don't want to try and force the right words out and degrade how I truly feel so I will just say thank you. Thank you so much to everyone.

We're in the Hospital

This is A.J. typing for one of the rare occasions. We were admitted to the Hospital last night as scheduled to begin inducing Tristen for labor. Things are progressing well and we're hoping by the end of the day we will be able to finally meet our beautiful little girl. Our Nurse Jenny is fantastic and very helpful and our Dr. is also very comforting as she's been for this roller coaster. Tristen is dilated to 3cm now and is 90% afaced (i think that's how you spell it). Hopefully around noon they are going to slowly drain Tristen's Bag of Waters and then we'll see what happens from there. Thanks again for all the prayers and support and I, or a family member depending on circumstances, will attempt to continue to keep you posted.

our daughter

before everything happens in a few days, I want to take this opportunity to tell you what i do and don't know about our daughter Sophia Rose Dinkel.

I KNOW:

- she is one of the most prayed for babies i have ever known
- she is stubborn as all can be
- she knows what she likes (she has been in the same position in my tummy for the past 5 months, even when she has had extra fluid and the option to do flips and kicks)
- she has a head full of hair
- if she only lives a short time she will be held that whole time by the people who love her the most
- she gets the hiccups 1-2 times a day and they make her mad (as she starts hitting and kicking me when she gets them)
- she is an over achiever all ready (she has been practicing breathing and sucking for a few months now)
- if she only lives a short time, she will wear more outfits than most kids wear in a week. one being a beautiful pink dress
- she is loved by her mommy and daddy more than she will ever know

- she is tough, so much tougher than one would expect a baby to be all ready

- she has touched more lives than she will ever know

- she is little, but will look absolutely adorable

- we will do our best to not let her experience any physical pain

- she will always have a place in our hearts, no matter what happens

- i have all ready spent nights awake with her

- she belongs to God no matter what happens

- she has been taken hiking, camping, biking, boating, flying, been to downtown Chicago, up in the mountains, been running and swimming, to a carnival, to church, heard Second City perform, been to the Macy Windows at Christmas time, heard her daddy sing her christmas songs, been to get a Christmas tree and decorate it, had hands layed on her to pray, has listened to her own CD that has all kinds of Sophia named songs and girl empowerment songs, been part of a dance party, been talked to by her cousins, aunts, uncles and grandparents, ridden a sea-do, been in the Mississippi River, been part of the crazy Thanksgiving holiday with the Hauk Family, been rocked and sang to by her mommy, been read to...

I DO NOT KNOW:

- what this world has in store for her
- if i will get to bring her home to her room, see her grow up, paint her toenails, do her hair in pigtails, be embarassed by her parents, see her fall in love, get her heart broken, get married.
- why we were chosen to walk this path
- what her birth will look like
- how God will use this experience in our lives, though i know he will

amongst all this i have a sense of peace. knowing that this is in God's hands and that i finally get to meet and hold my little girl.

our family will keep this updated when we can't during her arrival. which is due to occur on Tuesday 1/25.

thank you for all your prayers, gifts and words of encouragement. they have fed and nourished us through this process.

all our love- tristen and aaron

roller coaster ride- a diagnosis

i have decided that this is a roller coaster ride. sometimes the ups and downs take awhile to build up and sometimes they happen in a matter of minutes. today was minutes. and may i just note- i have never ever liked roller coasters and do NOT ride them.

i went in for my weekly- check my weight/urine and BP appt, to get pulled in to the back office to talk with my doctor on the phone (who was at another location that day). she has heard back from the Cedars-Sinai Skeletal Dysplasia people-- who specialize in diagnosing types of dwarfism while in utero. they looked at our 20 week ultrasound and then when they talked with Dr Adelberg- she updated them on our most recent growth ultrasound.

unfortunately the diagnosis is not great. not one bit. they are diagnosing her with- Achondrogenesis Type 2. it is a fatal diagnosis-- the babies who don't die in pregnancy are born and only live a few hours to a few days. (I DO NOT- recommend googling or looking this diagnosis up- there are some pretty scary pics that show up) my heart hit the ground. after last weeks ultrasound- i think both aaron and i were feeling so much more optimistic. i even went out and bought a few more baby items... registered for a stroller and car seat. then CRASH. i get this call. the worst part is that i was alone at the visit- as these are normally not important appt's for aaron to come to, so i was a mess without my husband- my rock. the fatal part is still what we knew about- the chest size. the rest of her talking was about how we now really need to make more plans for this diagnosis and plan for her death- exactly what we do and don't want done. and then them wanting to make sure that she doesn't change her position- as they really do not want me to have to go through a c-section and will manually move her if she moves breach.

needless to say-- i was in tears through the rest of my office visit and leaving the office. i immediately called aaron to let him know, which was a hard call to make. making my tears worse is that i was walking to the ultrasound where i was going to have to see the dr that i saw previously and did NOT like at all.

going into that appt- i had guestimated my fluid to be around 24cm... and i was darn close- 23.7. ha! take that ultrasound! that dr came in and luckily he had all ready talked with my doctor so he knew what was going on. he came in and was actually very nice and caring. he turned out to be the more optimistic one. he states that he knows that this lady has given us this diagnosis (and that she specializes in this)--- but due to her last chest measurement, that he doesn't want us to give up hope on Sophia. that chest size is not bad and there is room for quite a bit of lung. he encouraged me/us to really give her a chance to see what she can do with that chest measurement and see how well her lungs will work. he recommending letting the neonatologist do their thing and see what it does. he said he isn't so sure it is going to be fatal. i was shocked and not prepared for this kind of response. just as the roller coaster was dropping down and we were holding on for dear life, scared out of our wits, then it levels out and we are right back where we started. we are back not knowing what to expect and feeling like we are back not knowing what ride we are on.

i walked out of the hospital feeling sick to my stomach after such a quick drop and crazy emotions in such a short time. all i know is- that my fluid isn't going to last very much longer. and in an attempt to have the best experience possible in this situation, we are going to plan to induce early- next monday night. so we can get our family out here and i can have my doctor. if we don't, she will only have a few more days worth of staying in, but it will add so much more stress to our lives and our families lives... which we do NOT need more of. of course- this means i cannot go in to labor this week.

this week my goals--- NOT go in to labor, rest rest rest, finish up what i need to get done at work, get a manicure, and meet with String of Pearls lady. (this is a great organization that helps you prepare for the death of a child after birth and provides us with some support- thanks again Gayle for your recommendations!)

today we are both just trying to get by. cry a little. rest a little. pray a lot. and just be with each other. we are both so ready to be done with this ride... no matter how the ride ends i am ready for this part to be over.

here goes the end.... t.