Update

22 Weeks, 2 Days

We went to our appointment yesterday morning, praying God for a great report. We asked the ultrasound tech if he could see a nose bone and he said something along the lines that there was not much to speak of. I started crying a stared at a piece of tape on the ceiling for most of the rest of the scan. Later he looked again for the nose bone and said that although the bone was not there, the baby did have quite a profile and a defined nose, which he said is not common in the other babies he has seen with DS. He said the heart looks great and that he didn't see any other signs that can be seen with downs syndrome, however some DS babies look perfect on ultrasound. He said the doctor would be in to review the pictures. Then the second bus came in to hit us. Right away I could tell she noticed something wrong. How is it that these ultrasound techs can do this every day, spend an hour doing the scan and not see issues, but the doctors can see them from grainy images??? Our baby, along with 25% of other DS babies has ASVD. His heart is not formed correctly. He will need surgery at 4-6 months old to correct this.

Here are some questions we are getting and their answers:

• Is it certain that Caribou has DS? 
• Not 100%. The only way we will know for sure is if we do Amnio, which we are not planning to do at this time. 
• The heart defect also happens in otherwise healthy children and rarely, can be misdiagnosed. 
• A small percentage of healthy babies have small nose bones. When I was younger I had a small nose and so does Jamin.
• The Quad screen alone only gave a 1:75 chance of having a baby with DS.
• Each of these risk factors alone are not a sure thing, however the fact that they are all present makes it extremely likely our baby has downs.
• We believe that God can heal our baby and have it be born 100% perfect. This is our prayer and we ask that you will join us in this. However, we are making preparations to welcome a baby with special needs into our home.
• Is Trisomy 18 still a risk?
• The heart doctor said she could not answer this question. We will need to wait to talk to the high risk OB on Dec 12.
• What can you do to help?
• Pray for the baby to be healed.
• Help us to focus on the positive fact that we will be having a new baby soon.
• Let us know if you know local families who have kids with DS who are willing to talk with us. I honestly could not name one person I know (in person) with DS. My closest interaction with DS is from a TV show that was on in the 80's or 90's (no idea what the name is) that had a star with DS in it.
• When the baby comes, we will likely need meals and help babysitting.
• Please save any formula samples you have that expire after April 2012.
• How are we doing? 
• I can only speak for myself, but I am scared.
• I am scared of having my baby be taken into surgery and come out with a giant scar on his chest that will be a reminder of what happened every time I change his clothes or give him a bath.
• I am scared for our future. I had kids so they could take care of me when I am old, not the other way around. I want to enjoy retirement with Ryan. 
• Who will care for him when we are gone? Who will protect him from being scammed or taken advantage of? I want to see my kids grow up to be fully independent.
• I am scared for Jamin. Will this make him have to grow up too fast since we will need more help?
• I am scared for the teasing and the looks. I know many DS kids are good at not letting this get them down, but I will be upset by it, Jamin might be hurt by it.
• I am scared and angry for our finances. We have worked so hard for the last 5 years and are almost in a financially stable place in our lives. We are actually about to have disposable income in a few months. Heart surgery (and the time and travel for it) and child care are not going to be cheap and may put us back on a tight budget indefinitely. 
• I am upset that with all the breastfeeding issues we had with Jamin that things may not go well this time either. Since the baby has heart problems he will need more calories that normal babies and possibly have a hard time sucking or swallowing. 
• I am hopeful 
• I have spent so many years upset with God. First with the infertility, then with the Molar pregnancy. I can't do it anymore. Many people have commented on how strong and trusting I am being, but the truth is I don't have any other choice. I simply cannot go on living unless I give this to God, so I have no other choice. I need to trust in God's plan even though I don't get it. I can only hope and pray that he will do good grand things.
• I am hoping and praying that our baby will be 100% healthy and show the power of prayer and the healing He is capable of. I pray God will use this to help people build their faith in what He can do and does do.
• With a 90% termination rate of babies who are diagnosed before they are born, I know there is a lot of work to be done. Even with the doctors who seem very supportive of us keeping this pregnancy, ALL of them have mentioned termination as an option. 
• When this baby is born, and if he has an extra chromosome, I plan to take him back to the original doctor and insist she hold him. I want her to see that his life is precious and that it is worth living.
• I want to work with doctors to give them resources. I understand that some Mom's would come to the decision to terminate on their own, but I think some would not have chosen that option if they were presented with more choices and better information. I truly wonder how many women out there live with the burden or regret everyday of a termination that was encouraged by their doctor. 
• While I am strongly pro-life, I don't even see this as a pro-life issue. I think that many pro-choice groups would agree that women deserve to get informed options so that they can make the right decision for themselves.
• I want the world to see my child. Like I said, I rarely see people the DS in public. I don't KNOW anyone with the condition. I want them to see a life worth living so they can make an informed decision if they ever need to.
• I am excited that these babies are generally more relaxed and very cuddly. I probably won't have to worry about him doing drugs, staying out late, getting his high school girlfriend pregnant or committing a violent crime.