Wednesday, November 23, 2011


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.

Tuesday, November 22, 2011

God' plans appear to be bigger than our prayers

22 Weeks 1 Day

I will try to post again later, but our heart scan today showed that nose bone was not there and that our baby has a heart problem. These signs make it very likely that he has downs syndrome. He will need open heart surgery when he is 4-6 months old.

Appointment day! Please Pray

22 Weeks, 1 Day

Today is the day for our appointment!

Our appointment is at 9:15, so please cover us in prayer for that morning as I have no idea when we will actually have the tests:
Here is our list:
  • Perfect heart scan free from any concerns
  • Finding a perfect sized nose bone
  • Not finding any additional problems during the scan
  • I will also get my blood drawn (I did not have time last week) to check my auto-immune disease levels. Pray that the disease is gone.
  • For peace before, during and after we get the results of the tests

Monday, November 21, 2011

Another Monday morning phone call

22 Weeks

I changed my ultrasound appointment to be with a different doctor at the high risk place, which meant that it needed to be changed from Nov 28 to Dec 12 due to scheduling conflicts. I had left a message with the phone nurse last week to let my regular OB know this and to make sure that pushing it out 2 weeks would be OK.

She called this morning saying she didn't quite understand my message and that the message she got was that I wanted the new doctor at the high risk place to take over my care (which is pretty much the opposite of what we talked about at my appt with her, so I understand the confusion).

While she was on the phone I asked her if I was missing something since she seemed much more concerned about T18 after she talked with the high risk place than she did after she talked to me. She read me all of the notes she had from the high risk office and we worked through them. The notes for the doctor that originally suspected T18 said something to the effect that "the patient was very distraught, she will call when she is ready for an amnio." This made my normal OB think I was wanting an amnio, when I have declined it at every offer. I am glad that I changed my appt to be with another doctor at the practice. My OB said that if the heart is good and a nose bone is found that she will be much more comfortable with not being as concerned about T18. SO KEEP THOSE PRAYERS COMING!

I am getting nervous for our appt tomorrow and I am praying so hard things will be perfect. The OB said that the US techs are usually trained in many things so they may be willing and able to look for a nose bone tomorrow..... this makes me extra nervous.  PLEASE PRAY PRAY PRAY

Sunday, November 20, 2011

Please add a nose bone to your prayers for Tuesday

21 Weeks, 6 Days

It just occurred to me that the heart specialist may be able to look for a nose bone on Tuesday since they will already be doing an ultrasound. So, I wanted to add finding a normal sized nose bone to our prayer requests on Tuesday.

Our appointment is on Tuesday at 9:15, so please cover us in prayer for that morning as I have no idea when we will actually have the test:

  • Perfect heart scan free from any concerns
  • Finding a perfect sized nose bone
  • Not finding any additional problems during the scan
  • I will also get my blood drawn (I did not have time last week) to check my auto-immune disease levels. Pray that the disease is gone
  • For peace before, during and after we get the results of the tests
Thank you everyone!

Saturday, November 19, 2011

Why Caribou?

21 Weeks, 5 Days

So, people have been asking me "Why do you call your baby Caribou?", so I thought I would do a quick post to explain. Please do not expect anything profound.

When we were pregnant with Jamin, Ryan did not want to find out the sex. I did and it really bothered me while writing on his blog while trying to talk about this human inside of me and using "it" or "baby", I wanted something more personal. So, we decided to come up with a temporary name. We came up with Kiwi. (There was no profound reason for this name either.)

Last fall we were in Minnesota for my cousins wedding and stopped to get coffee at a place I had never been before called Caribou Coffee. It was DELICIOUS! It was so good that I vowed then and there to use this name for our next pregnancy. I kept my word.

Please be praying for us on Tuesday! Our appointment is at 9:15, but you never know when you will actually be seen, so please cover us in prayer for the morning if possible. A perfect heart scan will be a step in the right direction for showing the doctors that our baby is perfectly healthy and there is no need for amnio or termination.

Monday, November 14, 2011

Still a Trisomy 18 risk??!!

21 Weeks

This morning I got a call from the OB herself (the one that I saw on Wednesday).

She said she talked to the head doctor at the high risk office. As far as my AI disease, he told her to KEEP monitoring my titer levels. I told her that I have not had those levels checked since I was diagnosed 2 years ago.

It also sounds like they are still quite concerned about this being a T18 baby. She (the normal OB) is really encouraging us to keep our US apt on the 28th to look for a nose bone. She also really wants us to have an amnio around 32 weeks. She said that she doesn't want to do an emergency C-section if the baby is T18 and in distress since there is a risk to me and a very poor outcome to the baby no matter how he is born.

This is such a roller coaster! Planning for a possible funeral right after the baby was born, to planning for possibly caring for a baby with special needs, now to planning for a possibility of both and still praying our hearts out that he or she is 100% perfect.

Here is my prayer list:
  1. A healthy baby free of problems.
  2. A textbook perfect heart scan on Nov 22.
  3. A textbook perfect ultrasound (including finding a normal sized nose bone) on Dec 12.
  4. Guidance on if we do amnio. 
  5. While we are at it - That the titers will show no evidence of my AI disease. (the change is what they are worried about for the pregnancy, but it would be nice to be free of the disease as well. I don't know that this has ever happened before, but I know God can do it)
  6. Peace while we wait for the test and if we get less than perfect results.

Wednesday, November 9, 2011

Good OB Appointment

20 Weeks 2 Days

My OB appointment went as well as it could have today. I really appreciate the time she took to just talk with me.
It sounds like their practice does not do abortions at all (they will make referrals) and it sounds like late term abortions still need to be done in states where it is legal. It makes me feel better that they will not "just do them".
She said that she thought my options could have been explained in a better way than they were, but also explained that the longer a woman is pregnant (in any pregnancy) the more chance a woman has of dying from being pregnant and that is why in a pregnancy without a good outcome termination is encouraged. They would rather have a mother home and alive with her living children than dead. She said that every patient is different though. I told her that I don't think I could live with myself knowing that I willing allowed the life of my baby to stop.
She also told some stories of times where she was around when the baby was taken to save the mom. In one case she had to do a C-section after the birth of a baby with T18 and she said she cried the whole time. I really feel like I am in good hands when the doctors do not seem to take termination lightly.

I also talked to her about the fact that the high risk office really doesn't seem to be doing anything targeted at my auto immune disease. She told me that she would do more research on the condition, write up a treatment plan and ask the high risk practice if there is anything that they feel she needs to add and she would manage it from here on out. That means no more $1500 bills for an ultrasound and 10 minutes with the doctor. (I am still waiting for my bill for when she told me I had T18. They probably charge more when the patient cries).

Aside from all of that junk, the pregnancy seems to be going really well. My belly is the right size and his heartbeat is 140.

We need to keep praying for a 100% textbook perfect heart scan on Nov 22 and NO more complications or "soft signs". We won't know if the baby has downs syndrome until we meet him at the end of March, so we are still praying that he (or she) is 100% healthy and free of extra chromosomes.

I do appreciate all of your prayers so far. I am extremely at peace about everything (which is weird because I am an expert worry wart). I am confident that if we do have a special needs baby that God will use him in powerful ways. However, I also have a feeling of peace that our baby will be fine and free of extra chromosomes. I am scared to believe/claim it because I am scared of being let down, but I really do feel like God is telling me he will be healthy.

Wednesday, November 2, 2011


19 Weeks 2 Days

I got a call today asking if they could reschedule our appointment with the genetic counselor until tomorrow when the doctor could see us as well. I took this as a bad sign and asked if the results were in. AFP was low, UE3 was low, DIA was high and HCG was high (all slightly outside of normal). She transferred me to the genetic counselor who said that I have a less than 1% risk of Trisomy 18, however I had an abnormal result for Downs Syndrome (Trisomy 21). The blood tests alone show a risk of 1:75 (anything below 1:270 is normal). However, with the ultrasound findings my risk is higher.

Thanks to getting to know Anna and her family, Down Syndrome scares me much less than it would have last year and FAR less than Trisomy 18 does, but it is still scary to think about raising a special needs child.

The good news is that T21 babies have far fewer health than babies with T18, but that means that without amnio, there are fewer comforting results we will get from other tests.

We still ask for prayer for a healthy baby. There is still a chance he has Trisomy 18 and of course every parent wants to have a child free from health problems!