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.

pictures

the cake from our "pregnancy celebration" at work

one of our maternity pics.... to see more go to

http://www.oertliphotography.com/blog/2011/01/12/tristen-and-aj-maternity/

Sophia's room

AJ and I at his Firefighter graduation

GROWTH!!

today was our final growth ultrasound. the next time we look at her arms and legs to see how big they are will be when we are holding her in our arms. i cannot wait to see her cute little face and hold her, no matter how long that may be.

so they gave us some really good news today.... her chest size went up a lot since last month. last month her chest measured 19, which put her in the 2 percentile for growth, this month- she is up to 25, which puts her in the 14 percentile. normal range is 10-90%, so yes she still is on the small side, but she is in the normal range!!!!!! they measured it multiple times to double check as they were really surprised it had gone up! we both just smiled knowing it was God's work and timing. they also looked at what is in her chest, and her heart doesn't take it all up. she actually has quiet a bit of lung tissue in there. now we don't know how well that lung tissue will work when she comes out, but at least there is space for it to grow and develop. our dr also wasn't concerned about the fetal lung maturity test being low, as she does have a small chest and there was alot of fluid- so those 2 factors may make the test come back falsely low. she was very careful to not try to give us false hope or let the chest growth give us a better outlook than we should have. but we both found this to be such an encouragement. it's nice to have some growth when you aren't expecting it and especially here at the end of the pregnancy.

her arms and legs are now on a 13 week delay- which is okay now that we have some chest growth. usually the limb length discourages us as it correlates to the growth of her chest. but with this visit, her chest grew so we are okay with a bigger delay on her limbs. she can be as small as she wants to be in that way. she will just be a cute little peanut. right now she weighs 4lbs 4 oz. so she may hit 5lbs for birth!

our dr confirmed that we are not draining anymore, so when i have contractions again we are going to let it progress if i am dilating. my goal is to make it 3 weeks from my last draining. jan 29th (38 weeks) or so. (well of course i would love to go till her due date but i doubt i can hold her in that long). we will see how my uterus tolerates the fluid build up. as i can tolerating being uncomfortable if it can. my hope and prayer at this point is that our family can get here in time.

all this great news made for some much more authentic smiles during our maternity pictures we took today. which i will share when we get them from Anna. i am sure they turned out great and will be a good way to remember this pregnancy.

anyway- i am going to hang out with Sophia's daddy and maybe even go on a date since i went through all the work of putting on make up and doing my hair for the pictures. ha! speaking of him- he has assigned me to bed/couch rest for the next few weeks and is making me take it easy to keep this little girl cooking as long as possible. so here goes my attempt to sit....

again- thank you for praying, God has heard and acted.

please continue with prayers for growth and healing. pray for us as we make preparations for her birth and possible death (as we need to plan for the worst now, so we don't have to make any extra decisions then).

-tristen

the last draining

so our weekend has been eventful for many reasons. AJ's parents came to visit.... and by visit i mean they came to be our man labor. ha. bless their hearts. they absolutely saved us by coming and helping to get our house in order. everything from finishing off the nursery (painting, setting up furniture) to cleaning around the house. all the little stuff that we were stressing to get done. this takes a huge burden off of both of our plates.

AJ also had his graduation from his academy. ill post a picture from this and of the nursery when i get them uploaded. but it didn't go off without a hitch. about 2pm i started noticing my contractions to be getting stronger and more consistent. i chugged a bunch of water and continued to rest, yet they continued. so around 330 i called by doctor and they said i could drink more water and rest, but knowing i had AJ's graduation at 6:30 i decided to go in right away so they could check to make sure i wasn't dialating and to see what was going on and make it stop. ha. so Dianne and I went to the hospital while AJ got ready for his ceremony. luckily i was only 1cm dialated- normal at this point in pregnancy and 70% effaced. but unfortunately when they did an ultrasound my fluid was back up to 34cm, which since i am getting later in my pregnancy my body is not tolerating the extra fluid as well.

luckily my doctors and hospital are awesome- and knowing that we wanted to try and make it to AJ's ceremony- they performed another reduction amniocentesis and drained off 2500 ml. the procedure went well, i really like the doctor that i had (she was the one I had the first time i was reduced). the only snag was miss sophia who kept sticking her foot in the way of the catheter, when the doctor pushed her foot with the end of the catheter she would pull it down and then push it back up. she must have thought we were playing some kind of game. ha. cuteness. we then had to go back to be monitored for only 30 minutes. which went well and then we were gone- straight to the ceremony. we made it just in time for me to see AJ getting his diploma and then i was able to pin him! :o) i of course wasn't feeling so hot, so i had to sit a lot- as i was contracting and my muscles were sore as always. we went to dinner to celebrate and then came home to relax.

they drew a test called Fetal Lung Maturity test with my amniotic fluid. which they warned us would be diluted due to my extra fluid- so it was probably not going to be very accurate- but we could draw and see what it was. good maturity would register around 55, her test came back as 9. really only 9? i know they say we should put too much stock in to the test as we don't know what the diluted fluid would do to the results- but this test result was reallllllly disappointing. one of those that you want to just choose to ignore, but can't get out of your head to ignore that result. it was one of those that woke me up in the middle of the night and wouldn't let me go back to sleep. it was one that haunted me and told me- you probably aren't going to be bringing a baby home. you may only get a short time with her. it makes my heart hurt and makes me cry. why are you decorating the nursery? why are you folding baby clothes? this ache in your heart for a baby to take care of and bring home to raise is going to remain and you will have a new ache in your heart that remains the rest of your life.

sorry. im sad. which comes and goes. and i know is okay to feel. as you can tell i like to write as a way to kind of process things, so you get to know my thoughts, fears and joys along with me.

anyway- we have our last growth ultrasound on tuesday and will be talking with our doctor one last official time to see what the plan is and if we have any picture of what is going to happen. when i got tapped yesterday- Dr Becker said they probably will not be draining my fluid any more since we are in the end stretch. they will let me go into labor when i go and let things progress. which is a slight relief in the way that i do not want to have anymore needles stuck in me like that again. it isn't worth it to only make it 1 or 2 more weeks at this point. unless they said i have to and then i would be the good mommy i am trying to be and suck it up. so we will know more on tuesday and will know one last time what her growth looks like.

pray. just pray what comes to your heart. i have nothing to add that we haven't all ready asked for.

-tristen

my new year

well it is my birthday- which is when my new year usually starts.... i'm hesitant about celebrating this next year of my life. i'm actually terrified of what this new year holds to be honest.... it could be really great or really horrible or more than likely both at the same time. yikes.

this year has all ready started off being both. for instance- i went to return a dress i had gotten for Sophia at Gap. it was a size 0-3 months, which is the smallest they make. when the lady behind the counter asked if i was returning it "because it was too small" i said no, it is going to be too big- she will be wearing preemie clothes. the lady looked at me confused, seeing as i was still pregnant, she asks- "when did you have your baby?" i proceed to say she hasn't come yet, but i know she will be in smaller sizes and that (this is something i never do- sharing her diagnosis) she is going to be a dwarf (may i note i said this in a serious way). the lady- then proceeds to laugh to herself and say "ha a dwarf". then me in my shock that she would think i was joking- say again even more seriously- no really she is going to be a dwarf.... the lady then proceeds to not look me in the face and handed me my receipt. i laughed all the way out the store at the ridiculousness of this encounter. maybe if i had used the m word in reference to little people i could see how she would think i was joking... but who even jokes about a baby being short anyway?

on the other hand- we continue to be blessed in such huge- unexpected ways by people we know and don't know. gift cards and words of encouragement. one of the most surprising and wonderful gifts was a woman at my work who donated some of her PTO to me so i can get paid for more hours while on maternity leave- since i don't have much left after all my doctors appt's when i was still working 8 hour shifts. something i didn't even know people could do that will help us so much. again- people and God are amazing. he continues to show us that he will provide for us.

i am 35 weeks this week- only 4 weeks left. i don't think i am ready for her to come out anytime soon. besides all the drama and emotional turmoil. the pregnancy has been physically rather great to me. i wasn't ever that nauseated or miserable. yes i was in alot of pain when i had the extra fluid on me, but even with that it was tolerable. it is amazing how tolerant your body is of all of the changes. this week at our dr appts- my tummy was only measuring 35 weeks, so i have a regular sized tummy again. ha. and my fluid only measured 27cm. so i gained 7 cm in 1 week. my goal is to make it another 2 weeks.... we will see. i also have to note that the past few times they have seen her hair floating around her head in the ultrasound- which is so super cute. i was a bald baby so it's fun she will have some hair. unfortunately they can't tell me if it is red :o( (which if any of you know- i absolutely love and am hoping one of our children get from their father)

we have our last growth ultrasound on tuesday the 11th. so our last look at how big her limbs and chest is until we get to see her in person. we also get our maternity pictures taken by a wonderful friend and photographer we know. i am excited yet know it will be interesting. aj has worked diligently to finish painting the nursery in his limited free time. i can't wait to get some of the furniture put together this weekend and make it feel like a real nursery. my need to nest and make a place for my baby is in over-drive and my poor husband has to do alot of the work. hopefully nana and papa dinkel will give him some help this weekend when they are visiting.

speaking more on my husband- he has his graduation on saturday from his academy- his first time to ever wear firefighter "blues" (the official uniform). he will officially now be a firefighter and we will have the license plates to prove it :o) ha. i am so proud of how hard he worked the past 5 + years to get to this place. he is going to do amazing and i know that what ever dept hires him full time will be lucky to have him. i can't wait for him to be blessed in this way. after all he has worked for and all i put the poor guy thru he deserves some good things to happen for him admist all of this junk. so i just want to thank him for being who he is and putting up with me normally and now with all my hormones and random crying fits. you are an amazing guy and i know i don't tell you enough how much i admire you and what you do for me and our family. my resolution this new year is to thank you more, say more words of encouragement and not criticise you as much. i promise to love you and be there for you no matter what this next year holds for us. i also promise to do whatever i can to be a crown for you and not a thorn in your side. i love you with all my heart.

continued prayer requests-

+ sophia to grow and be healed
+ her lungs to develop/mature as much as possible
+ God to guide us on how to budget our finances
+ that AJ is blessed with a firefighting job
+ that Tristen does not go in to labor early

love- the birthday girl