Sunday, November 18, 2012

16 & 17 Weeks

Multiple times throughout this pregnancy I have heard the word "perfect" used to describe our little one. It always made me uncomfortable. I don't like that word. Maybe I knew something was going to go wrong, or maybe I just always plan for the worst.

About three weeks ago I went for some bloodwork and my NT scan. Both occurred between 11 and 13 weeks. Since the NT scan went well, I assumed there would be no issues. I felt like I had finally entered the "safe zone" if there even is such a thing.

Along with the first set of tests, there is a second set of bloodwork that has to be done at a very specific time in the second trimester, usually between 15 and 18 weeks if you want it to be most accurate. I was planning on going the Wednesday before Thanksgiving because I had it off. But, for some reason I decided to go this past Monday, thinking nothing of it.

This past Wednesday night on the way to pick my husband up at the train station, I noticed a missed call and voicemail from my OB. At first I thought it may be a call to confirm our anatomy scan, but after quickly calculating in my head that it was still weeks away, I immediately knew it was something bad about the bloodwork I had done just days before.

When I called her back, the first words out of my mouth were, "Oh my god, what is wrong?" She tried to calm me down, but also needed to tell me the reason why she was calling. The bloodwork came back abnormal. They generally like to see your AFP (fetoprotein) levels at 1.0, although 1.0-2.0 is an acceptable range. Mine came back at 2.7, which means it is 2.7 times the median. I now fall under the category "high risk" pregnancy. Our baby is at a higher risk then most of having a neural tube defect, it can be an indicator of placenta issues, or many times a sign of complications to come in the third trimester of my pregnancy.

A few hours after the phone call I decided to reach out to the only person I knew who could provide me some type of support: my RE, DR P. I emailed her and within seconds recieved an automated response that she was out of the country until November 28th and if it was an emergency there were other numbers to contact. The tears continued. The next morning I awoke surprised to an email response from her (that is why I love her so much.) She had reached out to a friend of hers who worked at a High Risk Center at Columbia and these were her thoughts on my situation:

"AFP is totally non-specific; 2.7 is slightly high but different labs use different cutoffs (and there are different cut offs based on race, etc) That said, 2 is generally the threshold I remember. Many people will repeat it to confirm it's high before pursuing a workup but the other option is to go right to Level II ultrasound. It can be caused by many things...bleeding earlier in pregnancy, placenta issues, or can be a marker of uteroplacental insufficiency. If her scan is normal, I would not go as far as RECOMMENDing an amnio, although I would certainly offer it and then also do serial growth scans at 28 weeks and 34 weeks."

The reason for my elevated number is not bleeding, because aside from a little episode of it after a pap smear, I have had zero bleeding. The number doesn't seem to be high enough for a neural tube defect. So, my OB is leaning toward it is most likely an issue with the placenta. She said this will mean more monitoring for me come 24 weeks. Sometimes this can lead to low birth weight, premature labor, preeclampsia, and growth problems with the baby. Sometimes, it can mean nothing and we will deliver a happy, healthy baby.

Hysterical crying and the worst anxiety I have ever felt came over me for the first 48 hours after getting the phone call. I did go to work on Thursday and Friday, but avoided everyone and everything. I went in to talk to my principal and explain what was going on, only to break into huge sobs. She couldn't believe I even was at work and tried to get me to go home, but I knew it was best if I kept busy. She told me whenever I needed to leave I could. Everytime one of my students referenced my baby I had to hold back tears. It was so hard. I am showing now, there is no hiding it. And all I want to do is protect myself and this little baby.

On Friday I called my OB's office again and asked to speak to her. She called me back within a half hour and after breaking down yet again, she agreed it would be best if I came in for a quick check of the heartbeat to calm my nerves. I couldn't fight this feeling that this baby inside of me had died. Luckily, she was able to find the heartbeat right away which put my mind at ease, even if for a few minutes.

Upon pulling myself together over these last 48 hours I have done some of my own research. It seems out of 1,000 women, 50 will get the same phone call I got on Wednesday night. That is only 5%, but it doesn't matter how small, I am part of that 5%. Of those 50 women, 1 or 2 will go on to have children with a severe neural tube defect.

We have an appt. with a genetic counselor on the 26th followed by a Level II ultrasound. If everything looks good, close monitoring will be the next step. If abnormalities are picked up, we will need to decide about an amniocentesis, which would be performed that same day.

I don't know how we are are going to get through this next week...

I need to keep reminding myself, I have wonderful doctors and they are doing everything they can to assure everything is okay with both me and the baby, and they will continue to do so for the remainder of this pregnancy...but I am so scared. I hope everything is okay.

28 comments:

  1. I am truly sorry to hear what you are going through. You seem to be doing everything you can do to advocate for you and your baby. No matter what happens, you will just need to stay strong to keep doing just that. I am sending you so many positive thoughts to help you get through this. I hope this ends up being a false alarm. Thinking of you and your family!

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  2. I am so sorry. That is so scary and being nervous and anxious seems unavoidable. I'm praying for you right now and will continue to do so. will be thinking of you a lot!

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  3. I can't believe you're having to go through all of this. You are in my prayers. I hope this is nothing. Try to keep busy and enjoy your holiday, but I know that's so much easier said than done. I really, really, hope it's nothing, and that if it is a placenta issue, it's nothing close monitoring can't take care of.

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  4. Second comment...I can't stop thinking about your situation. I've read so many things where this comes out perfectly normal, and I hope that's you. Praying so much for you, L.

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  5. I am so sorry you have this scary news to deal with but I am hoping and praying you will be one of the many who go on to have happy, healthy babies. For now all you can do is be the best mama to your little baby bean as you can. Sending loads of love your way! Hang in there and please keep us posted.

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  6. Love! I'm sure this scary news is rocking your world. I wish I could offer some advice to take your mind off the news. I Am praying for good news at your appointment and thankful that you have such an amazing RE. *hugs*

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  7. I know this probably won't help you feel more calm, but it sounds like there is a very, very good chance that everything will be just fine! And, yes, remind yourself that you have great doctors and they will do everything possible to monitor your little one and make sure that you BOTH stay healthy. I am sorry that you are experiencing this scary time...as a pregnant infertile, I know these things are so difficult, especially because of our past experiences and all of the info we know about what MAY go wrong. Praying for you and feeling confident that things will be okay, L!

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  8. I swear, the worrying never ever ends. I will pray that you will both stay healthy and that the doctors will take great care of you. I am sorry you have to go through this, I know that pit in your stomach fear and it sucks...I am thinking about you!

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  9. So very sorry to see this update. You must feel so scared and anxious. It does sound like your doctors are all doing anything and everything they can to make sure they are on top of this and what it might mean for you. I know it is hard to believe that the odds are in your favor, especially since having gone through infertility you already feel like you are in the minority. I will be praying for you to feel peace and assurance throughout these next several weeks.

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  10. Sometimes all this crap just never seems to end. I hope that your scan goes well and I will be thinking of you in the interim.

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  11. I'm sorry about the scary news. I got that same shocking news (only with my NT bloodwork) that put us at high risk of low growth, and/or placental issues, and/or chromosomal abnormalities.

    Right there with you on the worrying, but our little close-together bubs are fighters. Always here if you need a chat! xxx

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  12. Woah that post was not one I expected to read from you today. I'm sorry you're going through all this stress! But the way you've broken down the statistics will hopefully do something to help calm the worries. You're in great hands, and everyone around you wants nothing but the best for you and your bub.

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  13. Sending many positive thoughts your way that further testing comes back normal. It sounds like you have some great doctors who are very understanding. ((hugs))

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  14. I know that almost the exact thing happen to my friend when she was pregnant. She was scared to death and rightfully so. At the end, she had a beautiful baby boy who has healthy and full of life. Thinking of you and hoping for news to help you relieve some of this fear and anxiety.

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  15. I am so sorry you have to deal with confusing and scary news! I'm so scared of these types of test because I swear everyone I know that has had a number come back high or low, has a perfectly healthy baby after months and months of worry! I'm so glad your RE was awesome and reached out to another doctor - I hope that helped a bit! Just think of it this way - more monitoring means more time seeing the baby!!! I would recommend getting Sonoline B Fetal Doppler - it's only $50ish on most sites and it has been worth every single penny. I listen to the baby's heartbeat every night before bed and it helps ease my fears. http://www.fetaldoppler.net/sonoline-b-pink.html?utm_source=googlepepla&utm_medium=adwords&id=21692666828&utm_content=pla
    Will be saying some prayers for you!!

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    1. you can also get one on amazon called the Angel Sounds Doppler- its cheaper at around $30 and still works well. I was able to pick up heartbeats at 10 weeks with it.
      Praying that your higher level is nothing but a false alarm.

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  16. I am so sorry. I would be losing my mind. I give you all the credit for keeping yourself together. I do have a bunch of friends that had problems with their first trimester screening, and all ended up being fine once they had an amnio. Is there anyway you can just get the amnio to have piece of mind?

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  17. So so so many thoughts and prayers going your way. I am just so sorry that you have to be dealing with this. Praying so hard that things are okay! Hugs!!!!!

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  18. I absolutely hate this for you. Stress and worry is not something you, or any pregnant person, needs to go through. You, your husband, and most importantly that precious miracle, are in my prayers. Praying everything goes well when you get more tests done.

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  19. So sorry Lindsay! Thinking very good thoughts for you. xoxo

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  20. I know how scary it is to think that something bad is going on and trying to keep yourself in a calm place. You are doing what you can and it sounds like your medical teams are too. Just hang in there and love that little baby. I bet things will be okay.

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  21. Lindsay, I'm so sorry! After finally having a chance to breathe, it must feel like everything is crashing down again :( Chances are, though, that everything will be fine. This happened to a friend of mine. Her u/s looked fine, but then her blood work came back positive for a neural tube defect. They had her wait 2 weeks and then come back for a level II u/s - and maybe repeat blood work? - I can't remember. Anyway, it all turned out to be just fine and now she has an absolutely adorable little boy. I wish doctors better understood statistics and warned us about the false positive rates on these tests! It's all so imprecise and worrying when you're in the midst of it.

    I hope you have lots of distracting things planned with your families for Thanksgiving and can put your mind at ease until your appointment on the 26th! I'll be around on Saturday and Sunday if you want to get together. We can eat the worries away spend some time pampering ourselves. You deserve some TLC!

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  22. I'm so sorry you're having such a scare! I think I read somewhere that women who have been through IVF tend to get abnormal results on the screening tests than other women do. Add that to the statistics you posted and your odds are really good that everything is fine. Sass is right - the false positives on these screening tests are really high. I know they have a good purpose, but I see so many women getting scared out of their minds by these tests only to find out later that nothing is wrong. Your consult with the genetics counselor will help a lot I think. They know so much more about the tests and the statistics of these things than the OBs know. You'll be in my thoughts! I hope everything turns out to be just fine! (hugs)

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  23. Ugh, I am so sorry this has to be so scary. Just another trip to limbo land. I am sure all will be fine, but that doesn't make the waiting and anticipation any better. I have heard of so many false positives, and ones where the Drs gave high odds, and all was just fine. I know this doesn't help any, of course you are going to be scared and think of the worst. I am thinking of you, and willing all to be well (also assuming all WILL be well), but thinking of you cause I know the heartache and worry it must cause. Can't wait for good news from you and a happy healthy baby. Also, want you to know that I am always following - just from my phone and for some reason can't comment on blogger from there.

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  24. I'm so sorry L but you guys are all in the my thoughts and prayers.

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  26. Hi,

    I'm Sharon and I write to you from India.

    Lindsay, It is God who has brought you thus far in this pregnancy and He will take you through it.! I would like to encourage with this verse:

    He performs wonders that cannot be fathomed,
    miracles that cannot be counted - Job 5 :9

    I believe our Wonder working God is at work in your life right now. God loves you and both you and your baby are safe in His hands!

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