Pregnancy Update

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Welp, I'm sitting here at my 26 week glucose test and it feels fitting to finally check back in and share a pregnancy update with you. I've still got a half an hour left until my blood draw, and I'm hoping I can get a few thoughts down before then. 



If you have been following along on social media, especially my Instagram stories then you are a little more up to date with how this pregnancy is going. I blogged a few weeks ago about our first ultrasound and I was blown away by the support you offered. You can go read more there, but essentially we found out about a possible birth defect and that meant being referred to a high risk pregnancy specialist for further testing. It was a bit of a shock after four other healthy pregnancies, but we did our best to just hang in there until we knew more. 


A few weeks ago we had our appointment for the more in depth ultrasound and I had high hopes for best case scenario news and a good to-do list for going forward. Soren met me at the appointment and even though I was trying to be optimistic, I was also actually terrified. I'm not sure the last time I was so nervous and sick to my stomach with worry. 

The ultrasound itself took about 45 minutes and then the tech sent us to wait for news from the doctor. We knew that we were likely dealing with a cleft lip, but weren't sure how severe it was or if it also involved the palate. I had seen most of the rest of the ultrasound and I knew that it was likely everything else looked normal. The doctor came in and delivered the news. He told us that the cleft did in fact extend into the palate and what that might entail. It means more specialists, more difficulty with feeding, and likely more surgeries. The first surgery doesn't usually happen until 4-6 months because the baby is bigger and easier to operate on and also more stable as far as feeding and weight gain is concerned. We are fortunate to live near a children's hospital that has a whole department for cleft lips and palates and even world renowned plastic surgeons available. It's really best case scenario in that way. But that we can't really know a whole lot or make a plan until the baby is born. 

Having a cleft lip and palate won't change anything for the rest of my pregnancy except that I could end up with an excess of amniotic fluid. The baby's palate issue makes it harder for him to swallow amniotic fluid in the womb and so less of it is absorbed. The only result of excess fluid is a bigger belly and more discomfort. But so far my fluid levels look normal. I'll have an extra ultrasound every month until I'm due to monitor that. 

Delivery should be the same as my others and after baby boy is born we'll make a plan for moving forward. The specialist also told us that this type of defect is really almost always just a fluke during development and it's very fixable. 

What he told us next though was the hardest part. He had said something about everything else looking "pretty normal" earlier in the conversation and something in my mind threw up a red flag. Why hadn't he said everything else looked excellent or really healthy? Why pretty normal? Well, I found out why. He told us the the baby's humorouses and femurs were measuring a little short. It wasn't much, 3 mm to be exact, but it was enough to call it a soft marker for Down Syndrome. Combined with the fact that I'm older than 30, the doctor wanted to note it and let me know that the chances that our baby also has Down Syndrome are definitely higher than average.

It was such a shock. I felt really numb, like my brain could process the info but my emotions couldn't. The doctor told us about our options for testing for Down Syndrome at this point in the pregnancy. I always opt out of those tests early in pregnancy because I don't think they will apply to me or that they would make a difference to us. 22 weeks is too late for those initial tests, but there are two other options that are actually much more accurate. There is a blood test that is 90% accurate if it's positive and 5% inaccurate if it's negative. And then there is the more invasive amniotic fluid test that is 100% accurate but it has risks associated with it. Still feeling a little numb, I signed the papers saying I had received all of the information and Soren and I left. 

As soon as I got to the car I started sobbing. It was a really hard thing to handle. Too much to bear to think of the difference between a typical normal pregnancy and to now consider a cleft lip, palate and possibly Down Syndrome. Soren seemed to be in shock as well and neither of us quite knew what to do with that kind of news. Our whole life could be changing in a way that neither of us felt prepared for. 

Over the next 24-48 hours Soren and I didn't talk about it. We actually didn't really talk about it for about a week. I told a few close friends and my parents the bare minimum and then kinda sat on it. Despite not talking about it I couldn't stop dreaming about it. My dreams were constant worry and stress and swirling unknowns. It was a rough week. 

Then I shared our news on Facebook and on Instagram and honestly things got a lot brighter after that. So many mommas shared their stories with me and it really made the unknown feel so much more known. Every story was different but the resounding themes were hope, happiness and strength. Our story will be different than anyone else's but we will be okay. We'll have hard times through it, joy in the progress and growth and lots to learn. God can make good things come out of every situation and we'll be more than okay. 

That being said, I have not gone to do that blood test yet. I will. But I've been procrastinating. My doctor said she does prefer that I go get it done if I'm not opposed to it. And I'm not opposed to it, I just haven't done it. It will take 5-10 days to get results back and the results should be reliable. The results will help us plan better for after the baby is born and I do think I'll be more mentally ready for what we have ahead if we know more. 

So I'll be heading in to get that test done this week. I do know it's still in God's hands and no matter the results, we'll figure it out as we go. 

So that's the update. Fingers crossed I pass today's glucose test because Heaven knows I don't want to do the three hour test. Thanks for all of the support and love! We really appreciate it and have been feeling your love and prayers. 

9 comments

  1. Praying for you and your sweet little boy to be! Like you, I am a believer and I know that God has this in His hands. May you feel His peace surround you and may His blessings fall on your family and your baby boy. xoxo

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  2. Sending so much love and prayers to you, Soren, and that growing baby boy! God's got you!

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  3. Sending so much love, thoughts, and prayers your way! God is with you every step of the way; He's got you!

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  4. Thank you for the update - I've been thinking of you. You will find the strength to get through the test and everything else ahead.

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  5. What beautiful heartfelt words. We have struggled with congenital heart issues for two of our children so I understand your feelings. I really enjoy your style, positive attitude and unending faith. Prayers of health for your sweet baby boy. I know he will be such a blessing for your family.

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  6. Kilee. My thoughts are with you and your family.

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  7. Thank you for sharing your journey! I know it can be hard with so many unknowns. Prayers to you and your family.

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  8. Praying for you!! With both my boys we had the saw short femur and were noted as soft markers for downs.
    We went through so mamy emotions leaving those appointments but ultimately God was in control. I learned so much through those feelings. God will bless you with what you need for the best of your family!!!

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  9. Thank you for sharing! All I know is that God will give you and Soren the wisdom to raise this little precious baby and He never gives us anything we can't handle and or overcome. Just know many people are out there praying for you.

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