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?

Sunday, October 25, 2009

First Day Out

This was my first day out of the house since last Wednesday when we heard the diagnosis at NW Perinatology. I didn't realize how overwhelmed I'd be and when I got home I felt like I never wanted to leave the house again. Just deciding what to wear was overwhelming. Do I wear my maternity clothing that makes me look obviously pregnant or do I wear something so I can hide and no one will ask if I'm pregnant, they'll just think I'm fat which is much easier right now.

My mom, Gavin and I went out for lunch for her birthday. And then stopped at the grocery store. I kept thinking I might see someone I knew and then have to tell them and then deal with their upset feelings about it which adds to my already overwhelmed up set feelings about it. I finally realized later that day that I can only deal with my own feeling and I don't need to take on anyone elses.

I also kept seeing other pregnant women and babies and this turned into tears. I thought why can't I have a "normal pregnancy." But later I realized that we are only trained to see pregnancy as normal if it is a healthy baby who out lives us. Who am I letting decide what's normal for me the world or God. My new normal is determined by God and if I can not be who I'm meant to be without going through this then I better want what God's normal is for me not the word's normal.

So my new mantras are: God's normal is my normal. and Deal with your own feelings and no one elses. I think I might be able to leave the house again if I can say these 2 things to myself over and over again.

Very Wise Friends and Family!!!

I just have to say we have some very wise friends and family. I want to be able to refer back and remember some of the things they said. I'm not going to leave their names signed onto the comments, I'll remember who they are. But I know if others may also feel comforted by some these words:

"Psalm 116:7 (NIV)
Be at rest once more, O my soul,
for the Lord has been good to you.
Even in this pain I pray that you can be at rest in His grace and goodness"

"He has a plan and a dream for Gracie's life and it is precious indeed. I know that we live in a world where bad things happen, but I'm more convinced than ever that God's power to redeem any situation is greater than anything this world can throw at us. I know He will redeem this as well. I've seen it time and time again since my dad had his stroke last year. God didn't cause it, but He will use it for good. Please be encouraged in your faith and hope for the future. You are on a journey you did not ask for, but God will have amazing blessings and "Grace" in it for you. I will be praying for you and your family for God's strength and comfort to hold you and inspire you. You are so loved!
"You intended to harm me, but God intended it all for good." Genesis 50:20
God intends Gracie for good--yours and hers!"

"Just as Mary treasured up and pondered the different circumstances of Christ's birth and life (Luke 4:19). My mom told me once that Mary wouldn't be Mary without having given birth to Christ and watching him give His life for us. I took that an applied it to my life. I am not the woman I was meant to be without my son Joshua. I treasure and ponder many facets of his pregnancy, birth, and passing."

Saturday, October 24, 2009

The First News of Her Diagnosis

Our baby girl, Gracie, is due March 13 or 15, 2009 depending on which doctor you ask. Gracie has trisomy 18, also known as Edwards Sydrome (named after the doctor who discovered it) or T18. I will post updates on how we're doing and whenever we find out anything new about Gracie here on this blog. We are thankful for all the support and prayers. (Level II ultrasound was Oct. 21, FISH confirmation Oct. 23, Amnio confirmation Oct. 29)

T-18 is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where "the more the merrier" is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". There is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed. (this explanation was pulled from this blog: Brianna Gives Hope

The level II head to toe ultra sound and echocardiogram that was done on Wednesday, Oct. 21 indicated these problems:
1. Ventricular Septic Defect or VSD-septum is completely missing which makes the oxygenated blood and unoxygenated blood mix. It makes it a very ineffecient system and places more work load on the lungs and heart. Sometimes these heal on there own and sometimes they are repaired with surgery.2. Atrial Septal Defect or ASD- to understand this one, go here:
3. Strawberry Shaped Head- I don't know the technical name for this, but the perinatologist said that this could indicate brain involvement.4. Pulmonary Artery no symetry5. Calcification in the bowel6. Fists Closed
I felt like God was trying to tell me all night long that he "knit Gracie in my womb" and that he did not make any mistake about it. In fact she is "wonderfully made" by God. I finally feel like I have some glimses of "the peace that passeth understanding" Phil 4:7 Even though I still cry all the time I have some glimses of his peace.
The world may see Gracie as "not normal" but that's not the way I see her. I feel so bonded with her already, I feel God is showing me that I can love her with his love. I can fight for her with his strength. I can protect her until she is with Jesus in heaven. I don't know if he will do a miracle here or if he already has and we just have limited understanding of what the purpose is for all this.
But of coarse I will pray for a miracle that God will heal her completely of this. Phil 4:6 says, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." So I will ask for what I want here and if you're a praying type will you pray with me for a miracle and that our family will be free of anxiety and fear.
I know that I have more love for Gavin. Gracie is teaching me how precious life is. I have enjoyed Gavin more than ever and feel more love for him, gentleness and patience. I believe this can only come from God. I also have more admiration and love for Laiman than ever. I admire his strength of character and desire to do what's right for Gracie.These are some blogs that have been very comforting to me:

Brianna Gives Hope
Ninetynine Balloons
I See Love
This is the best one I have been able to find so far with the technical medical info:emedicine