Friday, December 25, 2009

Merry Christmas Gracie!!

We're having a very Merry Christmas. Gavin is really enjoying his new toys that Santa brought. Laiman is keeping me centered on the fact that Gracie is in a better place despite not understanding what God was thinking or what his plan was. Maybe our not knowing is part of what is making His plan work right. I may have to let knowing and understanding go and just rest in the fact that she's in a better place and looking back it will seem like a blink of the eye once we're in heaven with her.

Thursday, December 24, 2009

Merry Christmas

It means even more to me this year that because Jesus gave his life for me, paid the price for my sin and I accepted his gift of eternal life, I will be able to see my baby girl Gracie in heaven someday. I know my Redeemer Lives!! Thank You Jesus!!!! He brought Faith, Hope and the Greatest Love ever!! Merry Christmas to all!!!

A very precious gift from a wonderful friend.

Tuesday, December 22, 2009

Emily's tribute to Gracie

This is sweet, Emily, my brother-in-law's sister. She has a miracle girl who almost died at birth, Jaden. It means so much to me that she took the time to remember Gracie, on the beautiful Oregon coast. She says it was a beautiful night out on the jetty.

Balloon Tribute for Baby Blueberry Gracie

This is a blueberry that my friend Kyoko found growing in her garden the day Gracie went to heaven. You may remember me saying this already, that we nicknamed Gracie before we knew that she was a girl, "Blueberry" because when I was having morning sickness I kept having to drink BlueRaspberry Icees to keep from getting sick. December isn't really the time of year when you see blueberries growing. I have to think that this was another way that God was showing me that he is taking care of her up in heaven.

This is our dear friends Kyoko, Brian, Maya and Ani. They let off some balloons for Gracie in remembrance of her. The tribute to her is how God is healing me each day and I'm grateful for their taking time to remember her and share it with me.

I've had a couple of rough days, feeling very blue and low energy. I'm sure it's to be expected. I've been trying to force myself to get into the Christmas spirit, it's a lot easier with Gavin around who can't wait until Santa comes and until he can open presents. I made some Christmas cookies yesterday and some Christmas bars today. Tomorrow I'm planning to make my favorite Rocky Road. My baby comedian, Gavin, cracked me up today, when we were watching Regis and Kelly and Regis was out for a hip surgery. Gavin asked me, "where's Regis?"

The most important part of Christmas this year for me is recognizing what Jesus did for me. His sacrifice made a way for us all to be together in heaven someday.

If I could talk to Gracie right now I would tell her:
Sweet baby girl Gracie you brought more faith, hope and most importantly love to a world that needs it than I ever thought a tiny baby could. We're so thankful for your life. Mommy, Daddy and Gavin miss you so much and can't wait for the day when we will see you in heaven.

Wednesday, December 16, 2009

Balloon Tribute To Gracie

This is one of the spots where Laiman and I spent our first Christmas together. The first time we were here it was so romantic, it was really cold but it was not raining and it was dark enough for the Christmas lights to be on. Yesterday it wasn't nearly as romantic, it was raining and it wasn't dark enough for the lights to be on yet. One of the balloons wouldn't fly up because it was getting so wet and heavy from the rain. And I felt like I had dragged Laiman and Gavin down there and they weren't in to it. I have come to realize that we all grieve differently and I just need to allow him to grieve in his quiet way. Some of us want closure immediately and some of us need more time.

This is one of our favorite spots to go to on the lake when it rains. Its at the end of our street. This is where Gavin and I go to blow bubbles when it's raining because there's a covered shelter. And this is where I felt a very strong God presence a few weeks ago when Gavin and I were down here. I felt it again today and felt at peace and had some closure knowing that Gracie is being cared for by the best, Jesus, up in heaven. I felt cared for too.

Two ladies were taking there walk right by us as we let the balloons go. A few minutes later, they came down where we were at the lake and said, "we're just dying to know why you let those balloons go. " So of coarse I explained our story and they both gave me a big hug. One of the ladies said her brother had a still born baby. I felt like two angels were there to comfort me.

God is good and he takes care of us.

I don't want to forget what Gavin said to me earlier today. He wanted to see my tummy again and I reminded him that Gracie isn't in my tummy anymore, she's in heaven. Gavin says "with Jesus." I'm so amazed that he understands this enough to remember and repeat what I said several days ago. And then I'll never forget this, he still wanted to look at my tummy and says "another baby?" And I said there might be another baby again someday and maybe next time we'll get to take her home. He seemed very satisfied with this idea.

Another way that God cared for me today was at the grocery store. Many of you know how much of a couponer I am. And there are certain items that I usually can get for free or almost free and then I stockpile them so I don't ever have to pay full price for these items. Well paper plates, bowls and cups are one of those things. And yes, I do care for the environment but sometimes I allow myself the luxury of paper plates so I don't have to do dishes. Well we have been out of paper plates for some time and this month I haven't had the time or energy to put into couponing that it takes to get these items for free. But while I was at the grocery store today, they had Chinette paper plates on sale plus they had a "blinkie" coupon for $1.00 off right next to them. I didn't get them for free but I got them for a lot cheaper than full price and I felt like God was saying you don't need to do dishes for a few weeks, I'm giving you a break.

Sunday, December 13, 2009

This is one of those bad days that will make the good days seem so much better.

Hi, Gracie, All I can do right now to keep myself from going downhill fast is to think about heaven and what it will be like when I see you again.

Father God, please help me to grieve well until then. Help me to give you the pain and be comforted. Lord I'm in need of your comfort in every way now. Help Gavin to understand where Gracie is now, help him to grieve well and help Laiman to grieve well too. I don't know how to do this, please show me. God it is so unfair that I didn't get to see Gracie alive, that I didn't get to have pictures taken that show her living, that I didn't get to see her eyes when she was alive, that all I had was her lifeless eyes to look at. I don't understand that now, in fact I'm quite bitter about it and angry that I didn't get to hold my sweet Gracie while she was alive. Why did you let this happen? Help me to accept it and come to peace with it because right now I'm not. I need your help. If you had a really good reason that I can see please show me.

Today I watched Gavin stare at Gracie's stocking and the bear that Jake gave Gracie, stuck in the stocking. He walked up to daddy's stocking and said "daddy's stocking" and then he picked the bear out of Gracie's stocking and brought it to me and said "Gracie's bear?" so I said "yep that's Gracie's bear," he asked to look at my belly, so I pulled up my shirt and said "Gracie isn't in mommy's tummy anymore." "Gracie is in heaven now." Gavin says "heaven" and I said "yep way up in the sky in heaven where Jesus lives." "can you take care of Gracie's bear while she's in heaven." He said "yeah" and seemed very glad to do it, gave the bear a hug and put the bear in my suitcase and wheeled the suit case towards the door, and said "come on lets go" and I said "where ya going," he says, "heaven." We reread the book about heaven and looked at the pictures that showed the heavens above and I told him, see Gracie is up here in heaven and pointed to the picture.

Saturday, December 12, 2009

Invitation to Family and Friends:

We would like to invite all of our family and friends who were touched by Gracie's life to share in our celebration of her life. To allow each member of our family to grieve in their own special way, we will be having many special private family tributes to Gracie by floating a balloon up for her. We will attach a message for Gracie to the balloon string. We plan to do this whenever we feel like it's time to take time and remember to stay in the moment and enjoy life. We will take a picture wherever we are and the balloon we send up so we can remember these moments. Whenever we have a special famliy time we want to keep her in our memory and think of her. I'm sure there will be many times when we wish she were here with us and when we feel this way the most, these will be the times we will float a balloon up.
Many of you have asked what you can do for us. What would help us the most is if you would find the joy in every moment and if those who would like to would also send up a balloon when you think of her. If you can, please take a picture of where you are and the balloon you send up and e-mail it to us ( We will keep a online photo journal for anyone who wants to see.

Thursday, December 10, 2009

Letter to Gracie Jane Miller from Mommy

To my sweet baby Gracie, you were born early this morning at 12:35, only weighing 1 pound 5 oz, and only 12 inches long and before that you were already in heaven. When you stopped kicking I knew it was time to have Dr. Evans check and see if you were ok and you had already left us. Dr. Libby your dear pediatrican said that it's really amazing that any baby is born and lives with all the changes that the heart and each body has to make to sustain life on their own. It's always a miracle when any child is born and makes it to live. She said that all babies know their mom. She brought us snacks, drinks, soft tissues and a magazine to get us through the night. She said your heart and all the other things that the trisomy 18 did to your body just didn't allow you to live long. I don't think we will ever forget the compassion and kindness that Dr. Libby showered us with.

All the nurses took very good care of us. After you were born, two very special nurses, Denise and Teri helped Auntie Shell make keepsakes for us to remember you by. They were so sweet and tender with your tiny little body. And the clay castings of your foot and hand turned out a perfect models of your beautiful foot and hand. And I am so thankful for these because I can hold them in my hand and remember how precious you are.

Your legs and feet look like daddy's. You've got the same soccer legs that Gavin had when he was born. You're probably up there playing soccer as I write. I remember seeing his legs look so big and strong on his first ultrasound and even as tiny as you were, your legs looked just as strong and muscular. It was really hard to see your body deteriate and not to have seen you in person when you were still healthy. But I know that we all will look like that eventually and then get to have new healthy bodies like you have gotten up there. And I'm willing to trade not seeing you alive for you not having any pain or suffering.

Another very special nurse, Sarah lost her baby to trisomy 18 also, 2 years ago. She bravely came by and shared some tears and a hug with us. We were honored that she was willing to talk to us since it has been very difficult for her to work with other moms and dads that have lost their baby. We will never forget her kind gesture in sharing in this grief that we share.

I'm so lost and sad without you in my tummy I am so thankful that you didn't suffer and that now you're in the best place possible, heaven. I know you love it up there in your beautiful, healthy heavenly body, playing with James, Joel, Issac, Kim, Roland, Owen, Grace, and all the others. And Grandma Wach, Grandma Fortin, Grandpa Miller and Grandpa Calico are taking care of you and playing with you and you're having the best birthday party anyone could have.

And Jesus is loving you with the most pure love you could ever have and you are singing His praises with everyone else up there. It won't be long at all before mommy, daddy and Gavin will get to be with you again and we'll sing God's praises with you. Even though it seems like a long time for us it will be like a twinkling of the eye to you and you won't miss us at all since it will go by so fast for you living in the most wonderful place ever. Last night while I was sleeping God gave me some glimpses of your heavenly body and how beautiful you are up there, I can't wait to spend more time with you.

I worried that delivering you would be painful and extremely hard emotionally, but God gave me the most calm peace I could ever have. Through this time and I had hardly any pain even though you were breech and as I am recovering I hardly have any pain. After all the pain I had after delivering your big brother, I believe it is a miracle that I hardly have any pain. As hard as it has been to let you go I would go through this all again just to share the 26 weeks that we had with you. You brought more hope, faith and love to the world than I ever thought a little baby could.

I didn't know that the hardest part would be when the man came from the funeral home and put you in a sturdy duffle bag. I cried and cried and daddy held me. I had to remind myself that it was just your temporary body they were taking from me and that your heavily body that will last forever is what matters. I can't wait to see you up there again.

We felt very lucky when we came to the hospital that we found a very close parking spot. When we left the hospital we weren't so lucky because our van was covered from front to back in big clumps of white and green bird poop. And when we got home, our furnace broke. Oh how you have changed us, if it's not life or death it's not really a thing to be concerned with, now we laugh these things off. Compared to losing your baby girl it's nothing.

The joy and love I have with you in my life is immense. The suffering and grief of losing you has expanded my joy and I have had more joy than ever. You have taught me to not take life forgranted, to love with God's love, to fight with God's strength and to ask for lots of help. You showed me that God always finds help for us. I feel stronger than ever going through all this and know that I can get through anything now. You have taught me to enjoy every moment that God gives us. You have taught me what's really important in life. My tribute to you is to enjoy every moment I have down here until I get up there with you.

My sweet baby girl, oh, how I love you and miss you. I'm so thankful my new friend Jo reminded me that I can give God this grief and that God will comfort my pain. I believe her because of the losses she has endured. I am so thankful that my friend Kyoko reminded me that I'm His baby girl too and He will take good care of me also. You have had hundreds of people praying for you and our family and they tell me that you have touched their lives. I'm so proud of you.

My friend Lana found this amazing and appropriate quote. The last word in the quote is Grace but it also could be read baby Gracie:

.......To live with the conscious knowledge of the shadow of uncertainty, with the knowledge that disaster or tragedy could strike at any time; to be afraid and to know and acknowledge your fear, and still to live creatively and with unstinting love: that is to live with Grace. AbrahamsPeter Henry

Wednesday, December 9, 2009

Gracie has gone home to be with Jesus. Please pray for Monica, Laiman and Gavin.

Sunday, December 6, 2009

A Little Down in the Dumps the Last Few Days

I have to be honest and say that I have been down in the dumps these last few days. It started out as just a numbness but today I feel exhausted, angry, hurt and negative. I don't want to deal with this anymore and it would be nice to pretend it isn't happening but there are too many things that remind me that it is. I want to enjoy Christmas, but I haven't been feeling very well and my back hurts and I haven't had the energy to do some of the fun things that I usually enjoy this time of year.

I ordered some cute things for Gracie, little leggings with ruffles at the ankles, a preemie sized tutu, a blueberry crocheted hat. I couldn't believe I found this preemie sized blueberry hat, handmade, and we have called Gracie "Blueberry" from early on in the pregnancy because I was always sick and had to have BlueRaspberry Icees like constantly. I also ordered little crocheted shoes with a perwinkle flower on them, a headband with a flower that attaches to the headband or can be attached to a hat I also purchased and the flower can attach to clothing, a name bracelet for me that says "Gracie" on it and a matching name bracelet for Gracie that says "mamma" on it. It was so fun to pick these things out but also very hard because this is my first little girl that I get to dress up and I want to keep dressing her up and not ever stop dressing her up. I also fear that these things won't arrive in the mail in time and how horrible would that be if I didn't get to dress up my little girl before it was too late.

By the way if you are looking for handmade gifts for Christmas I highly recommend going to Etsy. In fact I may now be completely addicted to Etsy. It's really hard to tear away from their website just to warn you. It's like a on-line Christmas bizarre or if you're from Eugene it's like the Holiday Market at the fairgrounds, but with way more stuff that is mostly handmade from all over the world!! Tons and tons of cute little girl things that I haven't been able to find at the store and even better than buying from the store where everything is manufactured in China!

I hope I don't drag anyone down by this post but I just felt like I needed to be honest with how things are going.

Wednesday, December 2, 2009

You Are On Our Side

See a video of Bethany Dillon singing
You Are on Our Side
by Bethany Dillon
The orphan clings to
Your hand
Singing the song of how he was found
The widow rejoices
For her oppressors are silenced now
You sit at the table with the wounded and the poor
You laugh and share stories with the thief and the whore
When You could just be silent and leave us here to die
Still, You sent Your Son for us
You are on our side
The runaway falls at
Your feet
You are what he has searched for
The rich man is broken
When he stands beneath a sky full of stars
You sit at the table with the wounded and the poor
You laugh and share stories with the thief and the whore
When You could just be silent and leave us here to die
Still, You sent Your Son for us
You are on our side
You sit at the table with the wounded and the poor
You laugh and share stories with the thief and the whore
When You could just be silent and leave us here to die
Still, You sent Your Son for us
You are on our side
Still, You sent Your Son for us
You are on our side

This whole experience being faced with the possible early death of our daughter Gracie, has brought my appreciation and gratitude for my salvation to a new level. I do believe that I took it forgranted. It comforts me more than it ever has that Jesus is on our side and his sacrifice for me has new meaning. When I hear the lyrics to this song: "You are On My Side," I'm overwhelmed by his love for me and his sacrifice. And when I hear the lyrics of songs I have heard and sang for years, they have a new meaning for me. And when I read Bible passages I've heard a million times, they have new meaning to me. And when I see people suffering, it has a new meaning to me. Jesus suffered and died so that we all could rise.

I have read of some moms who are going through similiar difficulties, their baby has died and they don't have faith and I can't imagine what it would be like to go through this not finding any comfort from the fact that Jesus paid for our sin so that we all could be with him in heaven someday. Finding no comfort from the fact that there will be no suffering or pain in heaven when we get there. Finding no comfort from the fact that the length of our life on earth is nothing compared to the time we will have with Jesus and the rest of our saved loved one's in heaven. It overwhelms me to know that I get to be one of the one's that understands and has received the gift of eternal life from my Jesus.

Tuesday, December 1, 2009

25 Week Check Up

Today's appointment was better than I expected. THANKS FOR ALL YOUR PRAYERS!!! No faux pas comments were made and in fact our doctor seemed very sensitive, warm and caring, even though she called her a "fetus." I guess I should have reminded her of her name "Gracie." I know she probably thinks of her as a fetus to keep herself emotionally protected, and I have to respect that. She actually shared with us that her 12 year old brother, passed away and was on comfort care at our local hospital and she had good things to say about the staff who took care of him. Knowing that she went through this experience gives me some reassurance. She is willing to give us a referral to the perinatologist at Salmon Creek if we decide we're ready to go down there.

I only have gained 1 pound in the last 4 weeks which was a huge suprise to me since I feel like I have gained more in the last 4 weeks than I have in the whole pregnancy. I measured at 26 weeks. Our doctor reminded me that since I have excess amniotic fluid that I could end up measuring ahead of the calendar but said 26 weeks isn't too bad. She said if there were any extreme changes in measurement she would order a new ultrasound.

We found out that there is a place that does 3-d keepsake ultrasounds down in Portland, where they give you a DVD and so we are checking into that. Most medical facilities will not allow video footage of the ultrasounds that are performed due to legal issues. We tried at our last ultrasound but they wouldn't allow video footage.

She did remember to order my glucose tolerance test, I guess 29 weeks is better late than never. I have however performed my own glucose tolerance tests on myself and it came out normal on 2 separate occasions. All my diabetes educator friends will appreciate that. So I'm not too worried about having gestational diabetes.

Thank you for all you prayers, comforting cards, and e-mails. We are grateful!!

Monday, November 30, 2009

Fall Turning to Winter

Fall decorations are down and this week Christmas decorations go up. I made my first Christmas ornament of the year. And I have discovered a new hobby, making flowers out of fleece and embroidering them. I'm trying to make the perfect flower to decal onto a white dress that my mom is making for Gracie. This is great therapy for me.

We shopped all over Longview/Kelso this weekend and found only 2 premie outfits in the whole town. And of coarse they were frilly pink, which I try to avoid but ended up buying anyway just so that I have something and don't have to worry about not having a single thing for her to wear since she could come at any moment. I'm hoping to get down to Portland this week to see if I can find something that's not frilly pink.

We had a great black friday, although we had to spend 3 hours at Joanne's fabrics due to the line up at the cutting table. We were able to pick out all the fabric for Gracie's blanket that my sister is going to make and we got all of it for 50% off with an additional 20% off the entire order!!

My nephew Jake, the most sensitive little boy you'll ever meet brought gifts for Gracie. He hasn't read the blog or anything like that but somehow picked out a plaque with a cross on it that had "Faith, Hope and Love" written on it! I feel like this is another reinforcement of God's promise that we all have an important purpose in this life including Gracie. I was looking for some inspiration for what colors to have Gracie's blanket made with and the cross had all the colors I liked on it.

Jake also gave Gracie a teddy bear and last night Gavin was holding the teddy bear and brought it over to my belly and said, "here Gracie." It's hard to know how much Gavin understands, but he does know his little sister's name.

I'm 25 weeks and will go in for another check up with our local doctor tommorow. I have started to hate going to the doctor. At home I can stay in my bubble and don't see the contrast of a "normal" pregnancy with my "new normal" pregnancy. At the doctor, I see all the healthy pregnant women sitting in the waiting room while we sit waiting to hear more disrepectful comments from the doctors about how our baby is "just going to die anyway,"" or "if she lives Gavin will have to learn to live with a handicapped sibling." I really have to put my shield up and try to deflect all this and let God bring me to His peace and even joy, remembering to enjoy every moment that we have with Gracie even at the doctor's office.

Last night I read about a little boy named Nolan who is 5 months old and has full trisomy 18. I have a lot of hope when I read his story because he has only been limited by his heart which is holding up great for him at this point. He doesn't seem to have any other problems except that he needs to be tubefed just because he gets too weak to eat from his heart problem. His mom is only 19 years old and has a great attitude and has done great caring for him with his special needs.

I also made a new friend on facebook who just delivered her baby, Charlize, at 20 weeks (a few weeks ago.) I know I ask for a lot of prayer but if you don't mind adding her to your list, she is really hurting and has to return to work on Wednesday and is very worried about people's reactions at work. She could really use as many prayers as she can get right now.

Wednesday, November 25, 2009


Thankful for/that:
1. Jesus that he set us free from the fear of death, and that Gracie will be with him in heaven if she doesn't get to be in my arms and we'll all get to go be with her there.
2. Jesus for providing comfort and peace and for never leaving us even while we are on earth.
4. Laiman for being my peaceful rock, kind, compassionate, sensitive, diplomatic, and keeps everything in its eternal perspective.
5. Laiman who is an excellent communicator and is very respectful.
6. Gavin, my little human curious george, even though he is just as curious and gets into everything, I wouldn't trade him for anything!
7. Gavin for learning to go potty on the toilet!
8. A warm roof over our heads that's close to an amazingly beautiful park that we can walk to and play at.
9. My crazy, outgoing, open minded, game loving, Mom, Dad, Sister, Brother-in-law, nephews and niece.
10. My crazy family that's willing to come to my house for Thanksgiving and do most of the work!!
11. All the kind people, friends and family and people I haven't yet met who are encouraging us, and praying for our family and that God is answering by giving us a calm peace, and joy through this most difficult time in our lives.
12. That Gracie is kicking and can go with us anywhere we go safe inside.
13. Laiman passed his end of step, especially before the holidays and for providing for us!!
14. For all the troops, past and present who are sacrificing to keep our country safe.
15. My i-phone:)
16. My computer:)
17. Coupons and store sales that match.
18. That I get to stay home and take care of my Gavin.
19. Black Friday.
20. Nap time.

Saturday, November 21, 2009

Gracie Kicks

Lilly giving Gracie a big hug and feeling her kick.

We had a great day today. No studying for Laiman!! And we just took it easy, meandering around from one thing to the next with no agenda. And then tonight to top it off Laiman felt Gracie kick for the first time and we saw movement from the outside!! What a great day!!

Thursday, November 19, 2009

Gracie's Heart

Today's cardiology appointment was better that I had hoped for. We got to see her heart beating and a few shots which showed us she has gotten bigger. We both really liked the cardiologist and felt the he was very honest and forth right with his assessment of her heart. He said that she does have a large ventricular septal defect and an atrial septal defect and a leaking valve. He said however that these will not be the limiting factors that shortens her life. And these problems do not need to be repaired right a birth. And babies with these heart defects can live several months.

They do repair these problems at about 2-3 months when baby is a little bigger and can handle the surgery. He said that most parents of babies with trisomy 18 do not have their babies go through the surgery, however. Just because everyone else decides this way doesn't mean it's the right decision for us. We have to live with our decision just like every other parent does. We felt like he was open to whatever we decided about surgery if we got that far. So we pray that God will give us wisdom on what we should decide because we currently don't know what to do. We'll face it when we get there. We feel that his assessment of her heart was encouraging, that she could live through birthing if I can carry her long enough for her to have fully developed lungs and not go in to labor too early.

He did however point out that many times there are other problems that will shorten lifespan in these babies with trisomy 18. For example the breathing can be affected if the part in the brain that senses low carbon dioxide levels isn't working and isn't telling the lungs to take a breath. They won't be able to tell in utero if this is her problem however.

We wrestle with how aggressive to plan for her care. Knowing that if it was Gavin we would do everything possible to help him live as long as he can live. If he needed a heart defect repaired in order to live we would make that happen. So why wouldn't we treat Gracie the same way. I don't want to add regret to the pain of loss. I also don't want to regret by adding to Gracies pain or allow her to suffer if it's not going to add to her life or quality of life. These are not easy decisions and we pray that God would show us what to decide and that we'll have peace about it.

We did however meet with a new perinatologist different from the last time we were there and I did not have a good feeling about her. She was not the warm caring compassionate doctor that I'm used to choosing for my care or the care of anyone in my family. I could go into the details of all that she said that made me feel like I couldn't trust her but I won't. Let's just say I won't be seeing her again and I'm going to try and forget about her.

We plan to stay with our local family doctor until I'm close to 31 weeks and then we will meet with the perinatologist who has been recommended to us twice, at the Salmon Creek Hospital in Vancouver. A much closer hospital than St. Vincents. We feel that even if we choose comfort care that we would like to go where they have dealt with these situations more frequently. And we still are praying that we will know in our hearts exactly what to decide about comfort care or aggressive care for Gracie.

I told Laiman that we should be able to face any fear or anxiety ridden situation that comes our way with no joy lost. After practicing my montra over and over again "don't let your fear take away your joy," we should be well versed at letting joy permeate any situation after going through all this.

God is Still With Us
It wasn't easy to listen to any of them tell me the kind of terrible problems she would likely be faced with. I wouldn't say that any of the doctors we saw today tried taking away our fear. And I wouldn't say that any of the doctors helped relieve any of our anxiety but I was able to allow God to fill me with joy despite what they had to say. I felt him beside me showing me that He was in control not them.

Wednesday, November 18, 2009

Laiman's Test

We've been anxiously waiting all day for the call from Laiman. And God answered our prayers:) HE PASSED!!! Thanks everybody for praying!!! Now he won't have another big test until May or June. We're going to celebrate with Lemon Chicken for dinner, Yippy!!!

Monday, November 16, 2009

Busy Week

We have a crazy busy week this week. Tomorrow at 11 am is Laiman's written test for his apprenticeship and Wednesday morning is his oral test. He's feeling like he'll need some divine intervention to pass. So we continue to keep him in our prayers for good sleep tonight and good review of what he needs before each of these tests. Also, Thursday is the pediactric cardiology appointment for Gracie. I'm feeling God answer your prayers as I have peace that whatever we find out God is with us and taking away our fears. We'll update you all on this soon.

Sunday, November 15, 2009

Faith Hope and Love and the Greatest is LOVE

"And now these three remain: faith, hope and love. But the greatest of these is love." 1 Corinthians 13:13

With Gracie comes Faith, Hope, and Love, something the world can't buy and could use more of.

Because God brought Gracie into my life I have more faith........
I believe she is meant to be and that God is knitting her together in my womb.
I believe he has a great plan for her life no matter how long she lives.
I believe he can comfort my pain.
I believe that Gracie's time on earth, no matter it's span will compare nothing at all to the time she will have in heaven.I believe that someday our whole family will be together with her and Jesus in heaven.

Because God brought Gracie into my life I have hope..........
I have hope that whether it's here on earth or in heaven that God will heal her body completely.
I have hope that I will get to hold her while she is alive.
I have hope that God will redeem this situation and bring good out of it.
I have hope that our whole family will all be together someday in heaven.

Because God brought Gracie into my life I have love.......
I know that I love Gracie very much but that Jesus loves her even more and I can love her with his love.
I know that Jesus loved us so much he made a way for us all to be together with him in heaven. He loved us so much he died for us.
I know that Gracie loves us and is capable of love no matter what her physical limitations are.

Without Gracie there would be less Faith, Hope and Love in the world. And Faith, Hope and Love are more valuable than any material possession. Thank you Jesus for Gracie.

Friday, November 13, 2009

Grateful For Your Prayers

I just wanted all of you to know how overwhelmed and grateful we are that so many people, new friends, old friends, family and even people we haven't met yet are sacrificing time for prayer for Gracie and our family. We are so grateful and feel so loved.

Kathy Christensen- I do remember you, your sisters and mom and dad. Thank you for sharing your story about Josiah and that you are praying for us at night when you're up with him. I pray that you will be able to get some sleep too and that Josiah will continue to grown and get stronger. And thank your dad and probably your grandma for me for passing on the blog.

Raemie Johnson- I thank you for all your insight and care. You're a great resource and supporter for what you've been going through with Isaac. Thank you for sharing with us and praying.

Mom-I do know who you are so you don't have to spell out your name:) Thank you for all your hours of taking care of us while you stayed at our house and for all the hours of prayer.

Pam Sand and Mom- I'm so grateful to you and all the people on your prayer chain at your church who have prayed for us. You have an amazing church that's willing to pray for a stranger, they have never even met on top of the needs of the church. It brought me to tears. Thanks to your mom too for her prayer for Gracie and great insight. You're my great little sister and I'm lucky to have you.

Leslie Noxon- What a great encourager you are, I don't know that I'm ready to go on Oprah at this point, but it's nice to know that you think I should. I want you to know how loved we feel by all your care and concern, advice and prayers.

Kyoko- You been won of my best supporters from the time I met you. You're comments, e-mails, gifts and prayers brighten my day and remind me of all the good times we had back in Eugene. You're right Maya and Gavin do have so much in common it's too bad we don't live closer, I'm sure they would hit it off:)

Amy-How's my old apartment looking in cinci? Thanks for all the encouragement and prayers. You've been a great friend to me for a lot of years, I still have great memories of our mountain biking trip:)

Chelsea-I don't know how to thank you for your being so open and sharing with me your experience, with Isaac. Thank you for all your hours of praying, time talking with us and remembering to pray for Laiman's test. Tell Dave that I'm so thankful for his support and helping Laiman through this time also.

Karen French- I'm so touched by your willingness to pray for us even though we haven't met yet. I hope we get to meet someday. You have been such an encouragement. I'm thankful for your openess in sharing about Kim, it has helped me.

Valerie and Jack- Your comments and encouragement have been so touching. I'm glad to know you're reading the blog and praying for Gracie and our family.

Donna Snodgrass- I'm so glad that my mom ran into you again and that we've been able to keep in touch. Thanks for all the touching comments, encouragement, scripture quotes and prayers. Hope you're doing well in Arizona.

Martha Hobbs- You have been such a dear friend to my mom. Thank you for your care, concern and prayers. Thanks for recognizing the importance of Gracie's life and God's plan for it, it means a lot to me:)

Auntie Carol- You're always there for me when I need you. And you make such a great wife, I hope Uncle Bert appreciates it as much as I do:) Thanks for keeping us in your prayers. I hope you know how loved we feel, and that we love you:)

Jo Lewis- I'm so humbled by your willingness to pray for us even though we haven't met. I have repeatedly thought about the comment you made to remember the joy and give God the pain, He can handle it. I'm sure I'll be needing that over and over again. And coming from someone who's lost a daughter and a son, I'll take any advice you can give me. Thanks for keeping us in your prayers.

Tiffany- My oh sooo resourceful friend, fellow dietitian and couponer. Thanks so much for hooking us up with Julie, what an answer to prayers!!! It means so much to me that you are taking the time, with all your business taking care of 4 kids and all the activites, to pray and read the blog. Thank you.

Pat Thomas- I'm absolutely amazed that you are going out of your way to pray for us even though we haven't met. When I read your comment it touched me so much I cried. I'm so thankful that Pam has so many great people in her life that are willing to pray for us. I hope that we will get to meet someday. Thank you!!

Nancy Ellis- I'm so grateful to you and all the gal's at LCH who are praying for us. Tell everyone I miss them so much.

Michelle- I hope you know how much we have appreciated your willingness to do whatever we need, calling Now I Lay me Down to Sleep for us, offering to make Gracie a blanket, packing up the whole family and coming to Longview for Thanksgiving. What would we do without yah!! Love ya:)

Kirsten- I want to thank you and everybody at Center for Healthy Living for the kind words and the loving card you sent. It brought me to tears. And also CHS for sending the rose that we can pick out to remember Gracie, so thoughtful!! Thanks for keeping us in your prayers.

Cindy Dizon- I'm glad to know that your reading this blog has brought some healing and encouragement and that I'm not the only one that needs mantras:) You have also been an encouragement to me, i hate that you have had to go through something like this too, but know that your pain and suffering isn't wasted, and God will turn it to good.

Gayle Carlson- It's good knowing that there are prayers going up all the way down in Eugene. Thanks for reading the blog and keeping us in your prayers.

And all the others- And I believe there are many other prayers going up for Gracie and our family. Thank you for all the prayers from those who are also reading the blog and praying. I was wishing there was a way for me to comment back to you on this blog but since there's not I figured I could just use the journal for that until I can figure something else out.

Thursday, November 12, 2009

Settling On a Doctor with help from friends of friends
Let me tell you it has been so nice to be able to communicate, process everything and get support through this blog. I think it has saved me on therapy bills. Some people think it's strange that I'm willing to tell so many people our story. But you never know if you tell someone who knows someone who knows someone. They might have an answer you don't currently have. A friend of a friend is a labor and delivery nurse and she has been a great resource for me. She also has worked in Portland and was able to confirm a recommendation for a perinatologist at Salmon Creek in Vancouver (much closer hospital for us.) He is the same perinatologist that a blogger who had a baby, named Owen, with trisomy 18 about a year ago, delivered with and recommends and said that he is a Christian. I'm leaning on going to this doctor instead of delivering in Longview. I just feel like I'll have more confidence and less doubts if we go with him

Chorioamniotic Separation
I was doing some on-line research last night bound to get to the bottom of what this gap between the bag of waters and uterus means. I discovered that the technical name for the gap between the bag of waters and uterus that isn't suppose to be there, is called chorioamniotic separation.

And it means that I'm more at risk for preterm labor, miscarriage and hemorrhaging. I have read that many woman who have this have been told by there doctor that they need bed rest. I'm upset that my general practice doctor, local baby doctor didn't even know what this is and the perinatologist didn't tell me if I need to be doing anything different? Now maybe there is different schools of thought here. Maybe some believe bedrest doesn't make a difference, I'm not sure. But it's another doubt I have with the current perinatologist. And confirms my gut instinct to go to the other perinatologist in Vancouver.

Heaven is a Wonderful Place
I was feeling like some of my hope of being able to hold Gracie alive is gone. So I started asking God for help. And just as I prayed for help, the package with my books from heaven that I ordered arrived at the door.

God is so good. The children's book about heaven may be more for me than for Gavin. It reminded me that God loves Gracie even more than I do. And I love her a lot so if he can love her even more than me and if she doesn't get to be in my arms..... she gets to be with Jesus, what better place for her is there than with him. And nothing bad ever happens in heaven, no more tears, no more sadness, no more pain, only good. She'll get to be with my Grandmas, Laimans' Grandpas, with Isaac her cousin and with our friends baby Roland and all the other millions of babies who died before they were born. My Grandma Wach can make her the best fried chicken, mashed potatoes and gravy and apple pie and Gracie can eat it with no health consequences:) And not only that but God made a way for us to be all together again someday because of Jesus.

And I know there will be a lot of pain that goes with this for us left here without her. But I know the best comfort I can get for that pain can only come from God. My first defense is to be mad at God and I know that that's ok too, just like Job. But I don't want to be mad for too long because I want my comfort too. Who doesn't?

Tuesday, November 10, 2009

Didn't Need A Mantra Today!!!

Todays Mantra: Didn't Need One!!
Today's Verses:
"The effectual fervent prayer of a righteous man availeth much." James 5:16 b

"Do not fear, for I am with you, do not be afraid, for I am your God: I will strengthen you, I will help you, I will uphold you with My victorious right hand." Isaiah 41:10

Didn't need a mantra to get through today. I feel all of your prayers and felt that God has been with me and has been keeping my fears down. It doesn't seem like enough to say this but I'll say it anyway......Thank you so much for praying!!!

Gavin and I had another bubble therapy session at the park today. And we got to spend some time with my cousin Angee. We went to a local bead store, where I have discovered 2 bead workers who can help me make a keepsake name bracelet. And I'm just thrilled about it. Tonight was leftover night, one of my favorites, didn't have to cook!!!

I know there a lot of you out there that are suffering in other ways and I am lifting you up in prayer daily also. Especially all the mom's who have lost babies. I sure have been blessed by the "fervent prayers of a righteous man," and I hope that I can pray for all of you also and that God would work in your life and bring healing and strength.

Again thank you for praying, but I have another request. Laiman has Wednesday off for Veteran's Day, and has taken vacation days for Thursday, and Friday. He is planning to use this time to try and catch-up on his studying for his test Nov. 17 and 18, next week. Please pray that he will be able to focus on studying and that his study time would be spent efficiently on what he needs to know for this test. And that he will be able to be at peace and trust that God will help him through this time.

Sunday, November 8, 2009

Praise Him

It's so good to get outside and I was determined to go for a walk today even though it was raining and cold and I'm so glad we did. Many of the moments I've had where I am the closest to God have been when I was outside in God's creation and today was no different. The park was picture perfect like a Thanksgiving Day greeting card. We found a perfect spot on the lake with a covered shelter and blew bubbles, big boy bubbles for Gavin and tiny baby bubbles for Gracie and threw leaves into the lake. And it was so good to know that Gracie could be there with us safe inside my tummy. I have the peace that passeth understanding that only comes from God. I felt like praising God and sang some worship songs. The two that came to me and soothed my heart:

Nicole C Mullins: My Redeemer Lives

Who taught the sun where to stand in the morning?
And who told the ocean you can only come this far?
And who showed the moon where to hide till evening?
Whose words alone can catch a falling star?
Chorus:Well I know my Redeemer lives
I know my Redeemer lives
All of creation testifies
This life within me cries
I know my Redeemer lives
The very same God
That spins things in orbit
Runs to the weary, the worn and the weak
And the same gentle hands that hold me when I'm broken
They conquered death to bring me victory
Now I know, my Redeemer lives
I know my Redeemer lives
Let all creation testify
Let this life within me cryI-I-I know
My Redeemer
He livesTo take away my shame
And He lives
Forever I'll proclaim
That the payment for my sins
Was the precious life
He gave
And now
He's alive and
There's an emptyGrave!
And I know
My Redeemer lives
He lives
I know
My Redeemer lives
Let all creation testify
Let this life within me cry
I-I-I know my Redeemer
I knowMy Redeemer lives
*I know my Redeemer lives
**I know, That I know, that I know, that I know, that I know
He lives*my redeemer lives
**Because He lives I can face tomorrow
He lives*I know, I know
*He lives*I spoke with Him this morning!
*He lives*The tomb is empty
*He lives*He Lives! I'm going to tell everybody!!*

I will never forget the woman who sang this song at a church in Portland that I went to with some friends. She sang this with all the heart and belief that anyone could have that she knew without a doubt even in her pain that "Her Redeemer Lives," there was not a dry eye in the congregation. And I'm hear today to tell you that I KNOW WITHOUT A DOUBT, even though I'm having the worst pain and sorrow I've ever had in my life, THAT MY REDEEMER LIVES.

The very same God
That spins things in orbit
Runs to the weary, the worn and the weak
And the same gentle hands that hold me when I'm broken
They conquered death to bring me victory

The other worship song that came to me today at the park is
"It is Well," by Horatio Gate Spafford.
I felt like God gave me this song today at the park especially the first verse:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

The lyrics become even more meaningful knowing that the man who wrote them was on his way to meet up with his wife and 4 daughters who had been traveling from the US to Europe by boat when the boat capsized. He received a telegram from his wife that said "Saved alone." His 4 year old son had already passed away previous to this trip from the scarlet fever and they were traveling to England for a vacation. When you can say with all of this pain, "It Is Well, with my soul" it's only because of God's healing hand and comfort.

If you're reading this today and you have not received any comfort and relief from your pain. I'm hear to say that MY REDEEMER JESUS CHRIST LIVES, and you can trust your life to Him. He will comfort your sorrow, grief and pain. He will give you peace. He loves you so much that he gave his life for you. He nailed your sin to the cross and you don't have to bear it anymore.

It is Well by Horatio Gates Spafford
read the history behind this him here.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot,
Thou has taught me to say,
It is well, it is well, with my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.
It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Oh and don't feel like you have to be invited to visit this sight. All are welcome.

Saturday, November 7, 2009

Getting Prepared

Well today I've been thinking a lot about getting prepared for anything that could happen. I bought Gavin a book about heaven and some adult books about heaven for my self that another blogger recommended. So I'm making a list of everything I want to make sure gets done here soon. It kind of a boring list so bear with me and skip to the highlighted purple parts if you don't have time to read this. I will highlight the questions that some of you out there might be able to answer for me.

1. Get keepsake kit together
Does anyone know where to find the supplies I will need?
I really want to make sure that I get Gracie's footprints, hand prints, put a print on a Christmas ornament and maybe on a Christmas stocking. If anyone has an other ideas for making memories, keepsakes, I'd love it?

2. Make a decision about whether to find Christian doctors, perinatologist, specialist? I'm having some doubts about the information we are receiving from the medical professionals and whether they are giving the best advice for Gracie. And because I don't know what's available and the difference in care between a level 2 and level 3 unit, I'm not sure what we should push for.

I get the feeling from our local doctor that if the cardiologist believes that her heart problems are not fixable our local doctor believes we ought to just deliver up here in Longview. I'm thinking that since they won't be looking at her heart right before she is delivered that they won't actually know her current status and it's possible that it will have improved from the time they do the last ultrasound until we deliver. And if that's the case and we deliver in Longview, the specialty surgeons won't be available up here.

So I'm almost thinking no matter what the cardiologist discovers we ought to go where they offer the highest level of care.

After reading other bloggers who have been through this, it seems that there are medical professionals out there who don't believe in the sanctitity of life especially the life of baby with trisomy 18 and that some health professionals don't believe these babies are worth their effort. So since I have read about this and know that this has been the experience of someone in the Portland area, it makes me want to find a Christian perinatologist and pediactric cardiologist. I know I will doubt what they tell me if I don't have a Christian doctor. I've never thought that religious beliefs would make any difference when it comes to the practice of a doctor or health professional. As a health professional my self, I didn't think it would make a difference but since I have read of these situations happening in Portland and acrossed the coutry, it has left me with doubts. And I want to be positive that we do all we can for her or if her problems aren't fixable I want to rest assured that comfort care is best.

I'm probably toiling for no reason but if I need to advocate for her care I want to be ready to. I'm thinking that I wouldn't have any problem with the current doctors we have worked with but I also don't want to have any doubts. And I'm not sure how to find a perinatologist in Portland who is a Christian or at least who believes in the sanctity of the life of a baby who has been diagnosed with trisomy 18, I don't want to have any doubts about this. So if anyone knows of one or has any idea how to go about finding one, please let me know. I know I have a little bit of time to get this arranged because even healthy babies who deliver before 28 weeks usually don't have enough lung capacity to live and the one study with babies who had trisomy 18 didn't live through delivery if they were born before 31 weeks and I'm currently 22 weeks.

The deal in a nut shell:
- if there isn't enough research to be able to predict which of these trisomy 18 babies will make it to 1 year old and even if you can predict this, it's really up to God anyway so shouldn't we be prepared to do all we can for Gracie in case she needs it. Is this rational or am I missing something (don't be afraid of offending me here if you are thinking of other sides that I'm not looking at, I really do want to look at this from all sides?)Please pray that we get the right team of professionals for Gracie.

3. Make a list of things I should take to the hospital
I don't like to pack, and I don't like lists but I know I will regret not having a list when it comes time. So I'm just going to have to think about this one. If anyone has an ideas of what's important let me know. Here are a few things, I've thought of so far:car seat, in case she gets to go home with usmusic (I'll have to work on this one, I haven't been in to music as much lately but it might be soothing for the delivery and nice for Gracie to hear also) I'll take suggestions if anyone has blanket (we have tons of these, but I'm thinking I should either make one or buy one special just for her)special baby toy or stuffed animalpremie outfits (I'm thinking I will buy something nice for her to wear, we plan to have pictures taken and I look forward to picking it out)clothing for my self (I really want to make sure and get a picture of our whole family, all 4 of us and so I need to have something nice to wear for that, as well as more cozy type things) which brings me to the need coordinate Laiman's and Gavin's clothing for this as well.toiletriesmake-up, blow dryer, flat ironCopy of birth planPhone number of people we will need to callmy laptop or arrange for someone to blog and e-mail for me

4. Pictures I want to make sure get taken
remind Michelle to contact Now I Lay Me Down to Sleep for us.
pregnancy pictures, including all of us, Gavin, Laiman and I as a group
wedding rings on her toes
her feet
her hands
her ears
her face
family picture with all 4 of us
Gracie in porportion to our hands
Each one of us holding her
her weight on the scale
the clock with time of birth
review Gavin's birth pictures and try to get something similar-I'm thinking of the one where Gavin is hanging like a rag doll from my mom's hand and it would be nice to get one like this of Gracie so that they can be framed and hung on the wall next to each other.

5. Discuss with Laiman what to do about a memorial service and decide whether to make arrangements before or after she goes to heaven. It just seems wrong to discuss this right now with her kicking inside of me, but something tells me that it will be a lot harder to talk about this once she has gone to heaven.
decide whether to creamate or have a burial and if burial then where?
find out what the hospitals policy is on this (I read about some states where they didn't consider it a live birth unless the baby had lived for a certain amount of time.)
where to have it if we have one

6. Get birth plan in writing and discuss with our doctor.
I would really love to discuss each step of the birth plan with a labor and delivery nurse so I can understand each step of care that is standard and what the options are before we make these decisions. So I'm hoping someone knows a labor and deliver nurse that I can talk to. Let me know if you do. I contacted an organization who does this but I'm wondering if they are flooded because they haven't gotten back to me.

Friday, November 6, 2009

Don't Let Fear Rob Your Joy

Montra for today: "I will not let fear rob me of my joy."
from Letter to Lilly

Verse for today: Isaiah 43:1

"But now, thus says the Lord, your Creator, and He who formed you, 'Fear not, for I have redeemed you; I have called you by name; you are Mine."

(this is Maddox's verse, a baby who had T18 and died at birth: The Stanfield Journey)

I'm still alive on this earth and Gracie is alive in fact God planned on her before the earth was even formed (thanks for pointing this out Lois:), and Gavin is here alive with me and Laiman and we have a lot to be grateful for. Especially grateful that Jesus suffered and died for us all so that we all can be with him in heaven someday. I've been a Christian from a very young age but His suffering and death for us has a new meaning today. It means Gracie's life on earth just like mine is only temporary, there's more to come in heaven

As I'm typing this Gavin is celebrating "Happy Birthday M&M's" and pretending to give me M&M's for my pretend birthday. I think he has the right idea.

I don't want to fear death, life on earth is only temporary. Why let its ending rob my joy.
I want Gracie's life to be all that it's meant to be and dwelling on my fear doesn't allow it to be all that it's meant to be. I will focus on celebrating her life rather than worrying about when her life on earth will end.

Thursday, November 5, 2009

In The Moment Day

Today wasn't as hard as yesterday. My friend and her daughter who is Gavin's age, went walking at the mall with us. Gavin saved up 75 cents of "potty money" (he's earning money for potty training) to ride on one of the rides at the mall. Gracie kicked a lot today starting with 5:30 am and this really has helped me stay in the moment and enjoy every minute.

We really appreciated all your encouragement, notes in the guestbook, e-mails, cards, care, love and concern. And most of all for keeping us in your prayers. We feel very loved!!

Wednesday, November 4, 2009

Today has been more emotional for me. Mom needed to go home and left this morning. And the discussion with the doctor we had yesterday hasn't left me. I have had to keep reminding my self that our days are numbered and no one knows when the last one is.

Enjoy every moment.

I had a fun time with Gavin at the park and grocery store this morning. I couldn't help but think how fun it would be for Gavin to have a baby sister. So I pray that God would heal every cell in her body. If not that God would help me to desire his will and see how he is redeeming this situation. I want to stay positive for Gavin and Gracie, I know it's better for both of them, so I have to pray that I can be.
Laiman is studying for his big test at work coming up Nov. 18. I know he is very worried that he won't pass this time. So we'll keep praying for that too.

Tuesday, November 3, 2009

Fall Leaves
This morning, mom, Gavin and I cleaned up all the leaves in the front yard. We filled a huge garbage can and it took 2 hours!! Gavin threw a horendous fit before nap time because he wanted to wear his McQueen pajamas (in the dirty clothing laundry) and not the clean Buz Lightyear pajamas. I ended up taking a nap with him since it was difficult to get him calmed down. I needed a break anyways after cleaning up all those leaves.

Dr. Evans asked how Gavin was handling all this. He actually has thrown many fits this week which is not like him. Dr. Evans said that he probably senses something is wrong and one of his only ways to express himself is with anger. She also said that it is also pretty normal at this age (2 1/2 years old) to act this way. He has been asking me, "mommy's tummy hurts?" I tell him, "mommy is going to be just fine, but the baby is sick." I'm not sure if he understands. Dr. Evans says they usually only ask the questions that match their level of understanding.

Appointment with Dr. Evans
This afternoon, we met with Dr. Evans, my family doctor who I had planned to deliver Gracie. This is the first time we have had an appointment with her since we got the diagnosis. She did all kinds of research for us and gave me all of the abstracts of the studies she looked at and said she could get me copies of the full studies of any of them. There really isn't a lot of research on trisomy 18. She looked at 6 studies, with 40-60 participants.

What I found interesting:
1. in one study of 60 participants, none of the babies lived if the mom went into labor before 31 weeks.
2. So far it didn't seem really clear whether aggressive interventions were worthwhile or lengthened life or even improved quality.

So this doesn't really help us with making any decisions about the aggressiveness of the interventions that would be appropriate for her or not.

Dr. Evans said that we should have a lot better idea of the status of Gracie's heart once we meet with the pediactric cardiologist on Nov. 19. I really appreciate Dr. Evans, she has been so honest with us, as well as caring and concerned. She has had 3 other moms who had babies with trisomy 18: one terminated, one died during delivery and one lived a few hours.

We asked if we could consider delivering at the Salmon Creek Hospital if we end up needing to go to a level 3 unit. She said we could and that the cardiologist would be able to answer that better depending on whether she would benefit from any surgical interventions. Salmon Creek doesn't have very many surgical specialist so if she needs that, it would probably rule this hospital out.

Since the possiblility is very real (50/50 or 70/30 depending on who you ask) that she could die before she is born, we discussed how we will know this. I don't even want to think about this part and feel very deflated discussing these things with Dr. Evans. I like to stay positive but I'm finding it hard to consider this possibility. I'm suppose to be within 30 minutes of a medical center. By 24 weeks I should be feeling her kick on a regular basis and if not I'm suppose to call. If I have more than 4 contractions in an hour I'm suppose to call. I'm not going to see Dr. Evans again until after the cardiology appointment unless the cardiologist decides I ought to see a perinatologist instead of her. I have been feeling her kick a lot more, the last couple of days. We will start getting a plan together for who will watch Gavin for us when she comes.

We got to hear her heart beat, 144 beats per minute (normal, big smile), I measured at 22 weeks and I'm 21 1/2 weeks so this is good and if I can stay on this track I should be able to carry her until 40 weeks as long as she can make it that long. The excess amniotic fluid can make your body think your further along than you are and end up going into preterm labor. She did not know what the gap between the bag of waters and my uterus meant, it wasn't in the perinatologist report. This was just something the perinatologist pointed out at the ultrasound when we were given the diagnosis 2 weeks ago. He just said it was a problem. I was so overwhelmed with everything else we were told by that point I wasn't formulating questions. So I'm not sure how big of a problem it is. I will bring it up again at the cardiology appointment.

Monday, November 2, 2009

New Favorite Verse

Just read this blog: Caleb's Journey From God it has a great video of baby Caleb (who has T-18) who just turned 6 months old and his dad. The last clip of the video is this verse:

Matthew 18:4-5 (Holman Christian Standard Bible)

"Therefore, whoever humbles himself like this child—this one is the greatest in the kingdom of heaven. And whoever welcomes one child like this in My name welcomes Me."

Sunday, November 1, 2009

Candy and Kids

Candy and kids can be a real dilema. I don't like to create any battles over food especially at meal time, but I also want Gavin to get the nutrition he needs. I also want him to learn how to decide for himself when enough is enough without needing to be monitored by anyone else. My way of handling it this year is to let him eat all he wants today and then put it away.

It was interesting to see him eat all he wanted. It was like he was trying out candy for the first time. He would take a bite of a candy bar and say "I don't like it" and would throw away the rest. After eating several pieces he got to his favorite M&M's and ate a few but threw the rest away so that he could try a different kind.

I hope I can keep that willingness to throw away what he doesn't want alive because I know that something can happen before you become an adult that makes you never want to throw your favorite candy away.

After being so ache and tired last night I worried that I didn't feel Gracie kick like I normally do, around 9 pm. She still hasn't kicked enough that I can get Laiman to feel it. This morning she was kicking a lot more which I'm thankful for.

Saturday, October 31, 2009

Halloween Fun

We had a full Halloween day. Mom, Gavin and I walked to the park while it was still sunny out but then on the way home it down poured and we got drenched. We made it home soaked and hopped into the shower. Mom made banana bread, while Gavin and I carved pumpkins and roasted pumpkin seeds. Gavin was fun to watch, he didn't want to reach his hand into the pumpkin to get the guts out, he said "yuck." I made an early dinner so we could get off and running. Ana, Hollie and Grandma stopped by to trick or treat. Gavin was just waking up from his nap and was very grouchy and didn't want to put his costume on but after a few pieces of candy he was ready to head out. Then we went to Grandma's and trick or treated her and headed to the Harvest Festival.

I worried a little about getting exposed to the various flu's that are out there especially H1N1 since I know it is riskier being pregnant. We also thought it might be difficult emotionally seeing old friends at the Harvest Party. We almost didn't go because of this but luckily it was no problem and I'm really glad we went. I wouldn't want Gavin to miss out on fun things like this. By the end of the day I was beat and also extremely ache, I think I might have over done it a bit.

Friday, October 30, 2009

A Visit From Angee, Fun Times!

Today my cousin Angee came for a visit. She is such a gem and so helpful. We all (Angee, mom, Gavin and I) went shopping and first stopped at Bob's Sporting Goods so Angee could get some pink boots. On the way out of the store Gavin pulled me over to the storm drain to look down it. I pulled out my keys out of my pocket and right when I was pulling them out I knew they were going down that storm drain. We were stuck, no way to get in the van and even if we called a cab, we wouldn't be able to get in the house. So we called Laiman our hero and thankfully we called just in time, he was in Longview and just getting ready to head to Driscoll. He stopped and made me a new van key and house key. I didn't think heros were suppose to tease you though and rub it in that you have a problem losing your keys. I can't help it I'm pregnant:)

We were able to stop and get coffee. I finally found a coat that should work for the remainder of the time I'm pregnant and still be able to wear it after I'm pregnant.

Encouragement from others who went before us

The other's who have been through this and blogged about it are amazing and I have learned so much from them. Here's what I found at: Wonderfully Made

The Inward Warfare - by John Newtown- Galatians 5:17
Strange and mysterious is my life, What opposites I feel within! A stable peace, a constant strife; The rule of grace, the power of sin: Too often I am captive led, Yet daily triumph in my Head.I prize the privilege of prayer, But oh! what backwardness to pray! Though on the Lord I cast my care, I feel its burden every day; I seek His will in all I do, Yet find my own is working too.I call the promises my own, And prize them more than mines of gold. Yet though their sweetness I have known, They leave me unimpressed and cold: One hour upon the truth I feed, The next I knew not what I read.I love the holy day of rest, When Jesus meets His gathered saints: Sweet day, of all the week the best! For its return my spirit pants; Yet often, through my unbelief It proves a day of guilt and grief.While on my Saviour I rely, I know my foes shall lose their aim, And therefore dare their power defy, Assured of conquest through His name; But soon my confidence is slain, And all my fears return again.Thus different powers within me strive, And grace and sin by turns prevail; I grieve, rejoice, decline, revive, And victory hangs in doubtful scale: But Jesus has His promise past, That grace shall overcome at last.

Thursday, October 29, 2009

Staying Present Wins Out Over Anger

After having those bad cramps the other day, I started to doubt that God would allow this baby to live even if it was only for a few hours and I felt angry. It's bad enough that Gracie may only live a few hours but even a few hours seems like a miracle to me that I would be so grateful for it. But if I miscarried and never have the chance to hold her while she is alive, it seems so not meant to be or from God. All of our days are numbered and no one really knows when that last day will be so staying present in the here and now and living each day to the fullest becomes really important. Just enjoying every minute of this pregnancy while she is alive in me so that I don't miss that is of the upmost importance. Enjoying Gavin and Laiman and staying present with them. Enjoying each and every time that Gracie flutters and kicks is what matters. I think I have an additional montra. Stay present and enjoy each moment, our days are numbered. This attitude has to be better for Gracie than being angry all the time.

Questions Answered by Wendy
Wendy our favorite geneticist called today to give a confirmation of our appointment time with the pediactric cardiologist that we requested. She asked me where we were going to deliver the baby. I told her what Jerri the other geneticist told me last Friday, that we were to return to our local doctor who would be following us from now on. I told Wendy my concern that if our baby happened to be one of the one's who made it to a live birth, that I wanted to have all the interventions and support she would need. Wendy agreed with me and said that our local doctor would need to send over another referral to the perinatologist. She said we would need to deliver at a level 3 unit. She also suggested that we consider Salmon Creek Hospital in Vancouver because it would be so much closer. She said that the ultra sound and echo that they did at NW perinatology did not show the extent of her problems, it was only to determine if there were any markers consistent with trisomy 18. She said that the amnio confirmed that there is trisomy 18 acrossed all 15 cells that they looked at. The amnio also confirmed that she is a girl. The cardiologist could not conclude the extent of her heart problems with the echocardiogram that was done because the position of the baby at the time they did this echo was not so that he could see for sure how bad her heart was. So he will repeat the echocardiogram when we come Nov.19. Wendy said that we don't really know the extent of any of the problems we just know that there are likely problems.

This was a relief to me because I wrongly got the impression at this last echo that the heart was really bad and that the other problems could be really bad as well. I am encouraged. I don't think I will work with Jerri anymore I felt like she was writing us off and not giving us good advice about being followed by my local doctor who is a great doctor but is family practice doctor and not a specialist. I researched Salmon Creek Hospital and they just opened a new NICU where there is a separte room for each baby and a place for the parents to sleep in each room. Also one of the bloggers I read about who had her baby with trisomy 18 about a year ago, delivered at this hospital and had a recommendation for a perinatologist and a neonatologist. I don't know if Gracie will make it this far, but I feel much better getting a plan in place in case she does.

Monday, October 26, 2009

Second Day Out

What a dark ugly day it is today. The rain is coming down and the sky is dark. Even my 2 year old son looked out the window midmorning and said "dark." My mom has been visiting for a few days to help distract me and suggested that we go to the mall and walk. At first I wanted to curl up and stay at home but then I remembered my new montras:

Deal with your own feelings and no one elses and God has my new normal.

I thought I could test drive these and see if they worked.It was a really good day. I saw babies. I saw pregnant women. I saw baby girl clothing. And I told my self,

"God has my new normal."

And it worked I didn't feel like I wanted to trade with anyone and I didn't tear up. Fortunately no one said a thing about my being pregnant, of coarse I was wearing a large sweatshirt that sort of hides that fact that I'm pregnant. I may have to practice the other montra:

Deal with your own feelings and no one elses, as I get bigger and can't hide.

One thing at a time.

Tomorrow and the next day we have dentist appointments. I called ahead and told them our situation and ask that they not say anything about my pregnancy. The receptionist was very professional and said not to worry she would make sure my request was honored.

E-Mail to our Local Doctor

Here are somethings I've been worrying about ever since the Perinatology office told us that we would only be followed by our local doctor, now. Here's what I e-mailed her and if there are any other questions you can think of that we should be asking please e-mail us or leave a comment.
Questions for Doctors:
1. Did the FISH results indicate that the trysomy 18 was across every cell?
2. Are the other problems identified in the ultrasound beside the heart indicating that this baby if she makes it to birth will not survive more than a few hours or at all. Are there indicators that can help to predict whether this baby has the capacity to live at birth if she makes it that far, even if it's just for a few hours?
3. They told us that we could consider a cardiology consultation. What would we gain from this? If the other problems listed indicate she would not even live at birth would a cardiology consultation be a mute point? We would like a cardiology consultation if the other problems don't rule out the possibility that she may live at birth even a few hours. If the cardiology consultation may give us an idea of whether the babies heart is capable of keeping her alive at birth for few hours then we would like one if the other problems don't rule this possiblility out.
4. These are the problems that were identified thus far, are there any others that we missed?VSD and ASDasymetrical pulmonary arteries, one is larger than the other
mitral and tricuspid valves opening in the wrong direction
strawberry shaped head
closed fists
calcification in the bowel- what is the extent of this? what does this mean?
polyhydramnios- what does this mean?
gap between the bag of waters and uterus. what does this mean?
5. We understand that the statistics are not in this babies favor. Are there any indicator that can help predict whether this baby may be one of the 10% who make it their first birthday? Are there interventions that may improve the chances? Is St.John's equipped to assess and perform these interventions if they become appropriate for her? I guess my concern is that she may end up being one of the babies who is capable of living to 1 year old or older and the interventions and assessments that would help get her there would not be in place. Would the interventions be painful and not worthwhile if she is only going to live a few hours anyway. If she is only going to live a few hours we prefer to make her as comfortable as possible and not miss the opportunity to hold her.
6. Did the amniocentesis confirm that this baby is a girl?