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.