Back with some news

Hi Friends, I’m back with some news. I want to fill you in on all the ups and downs of life while I was away but first, let me start by saying this ~ I’m 24 weeks pregnant and everything is ok. To say we are happy and thrilled to meet our little girl (yep, it’s a girl!) in less than 4 months is an understatement. I’ve thought a lot about how to tell this story here and in the end I think it’s best to tell the whole story. Afterall, it’s my blog, it’s my life and I think I’m finally ready to put it into words.

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It all started last year in March when we first moved into the condo. Boxes were unpacked, internet not set up, plastic wrapping still on the mattress when I found out that I was pregnant. (surprise!) It was so unexpected that I thought it was food poisoning then maybe fatigue from the move, but when I started running for the toilet at 2 in the morning Aaron said it’s time to pee on a stick. By the way, I now know why those pregnancy test kits come in sets of 3 – because we were in utter shock and it took 3 positive tests to convince us it wasn’t a mistake. It was pretty funny how shocked we were – one would think we didn’t know how babies are made by our reactions. I will never forget that night, standing in the bathroom with Dug and suddenly everything changed.

It took a few weeks for everything to really sink in. My parents cried, Aaron’s parents thanked us (haha) and while we knew it was too early to tell our friends, we couldn’t contain our excitement to our closest friends. I also began to experience the worse nausea of my life! I was barely functional but it didn’t matter – I had a life growing inside of me. At 9 weeks, we took our first ultrasound and saw our baby for the first time. I will never forget that moment either – it was so amazing and a little creepy. I didn’t expect the little blob looking thing to be moving and waving so much at 9 weeks. Everything looked good at that point. Then at 11 weeks, we took the nuchal prenatal screening without thinking very deeply about it – we were just excited to see the baby again, this time on a higher definition ultrasound. All I knew was that they measure the thickness of the nuchal which is right behind the neck of the baby – and I remember as soon as they showed the profile of the baby I thought ‘woa, that looks thick’ but what did I know? I don’t know what babies are suppose to look like at that stage. After the scan, they asked us to wait for the doctor and when the doctor came, he took us to another room and we met our genetic counselor – a small women with some sort of genetic disorder in a wheelchair name Tara. Even at that point, I hadn’t thought anything was wrong. Looking back, I feel so naive and almost foolish to assume that everything would just be fine. By now, Aaron and I know the drill – when they take you to another room, it’s not good news. I’m not going to bore you with the medical details but let’s just say that prenatal screening is only a screening, meaning that it will tell you the likelihood of a chromosome abnormality. If it’s an abnormal screening, you go on to actual testings to verify the baby’s chromosome. In our case, at that point, they already knew something was terribly wrong. A normal baby should have nuchal measurements from 1-3mm, 3.5-4mm begins to raise flags and 4mm they start telling you that there’s a 1 in 4 chance of down syndrome or other abnormality and will need further testings to confirm. Our baby had a 9mm nuchal – which already is considered a cycstic hygroma. They couldn’t tell us for sure what chromosome abnormality the baby had, but they knew for sure the prognosis is very grim and that I had a 90% of miscarriage before 19 weeks. If pregnancy continued there were health concerns for me. There was just not a single ounce of good news from that ultrasound.

Like I said, I’m going to skip through a lot of the medical stuff because it got really complicated. For our case, it was never straightforward, it was always ‘we know this baby won’t make it but we can’t tell you definitively what the abnormality is.’ In the end, what the baby most likely had was trisomy 15 mosaicism and the reason they couldn’t confirm has to do with how it was identified on the placenta but not in the amniotic fluid. Had our ultrasound have been normal, there might have been a chance for normal baby but because the ultrasound was so obviously abnormal, they were certain it was some sort of chromosome abnormality and the only one they’ve found is trisomy 15. The whole thing was just rare – trisomy 15 is pretty rare especially making it to second trimester, mosaicism is rare, given our age and medical history, hitting these odds was rare rare rare. Our dr has never seen a 9 mm cycstic hygroma in his 30+ years of practice at ucsd. Our genetic counselor, Tara, could only find us 5 cases of trisomy 15 in medical literature that have survived birth – and they all died in infancy. The whole thing was just so hard to understand and the results from tests trickled in weeks after weeks. With our limited knowledge, we try to understand what these tiny pieces of information meant for us …personally. I sat at home and grew a baby inside of me knowing that it wasn’t ours to keep.  We prayed, we cried, we named our baby boy, Eidom, a derivation from the greek new testament that means ‘we will see him again.’ The pregnancy ended at 18 weeks and 5 days on June 5th.

The thing is, throughout the whole thing, multiple doctors have told us that this was an anomaly. We were struck by lightening and the chances of it happening again is very slim. (All I can remember are stories of people getting struck by lightening multiple times!)  We were suppose to go home and grieve then look forward to the next pregnancy because that will get us through. So we did just that. We cried, we rested, we unpacked, we tried to live again. It was the strangest 3 months, it’s as if a switch had been turned on inside of me to be a mother but I had no baby. We tried so hard to move on but it felt so empty. I don’t think Aaron and I have ever felt so close and so alone at the same time. We were lucky and we got pregnant relative quickly but we were very anxious. We tried to contain our excitement and was nervous about everything. The nausea set in again and we began to dread the 11 week screening. At week 6 I went into the ER for relatively minor spotting – but now that I have a ‘history’ the nurses wanted me to get it checked out immediately. We were lucky that day, the ER was quiet and there was a Dr on call that can use the ultrasound (I guess not all Dr in the ER can?) so we saw our baby at 6 weeks. We saw her heart beating at 151 bpm and the Dr said it started beating just that day. (how do they know that?) Week 6 ultrasound is nothing but a little blurb of tissue with a beating heart. Then 11 weeks came and we did the screening, they take multiple measurements – 3.1mm, 3.3mm, 3.2mm, 3.5mm and bam! 4mm. We were then escorted off to Tara’s office. We’ve gotten to know Tara quite well by then. She’s the one that calls us with all the test results and explains all the statistics to us. I saw the look on her face and started crying. The thing is, 4 mm isn’t all that bad. It meant that the baby had a 70% of being normal, 20% of chromosome abnormality and 10% cardio abnormality. It’s not terrible considering what we went through, but it felt devastating! Nothing comes easy. So then we went through another round of testings. CVS at 12 weeks, anatomy scan at 17 weeks, fetal echo at 19weeks. Luckily, all the tests came back normal and at this point, our chance of a healthy baby is the same as any other normal pregnancy at my age. so there you go, that’s how we know everything is ok … for now. And we are so so so grateful that everything is ok.

I know it’s sad and probably makes people uncomfortable when I talk about my first pregnancy but that’s just my story – it’s all one story to me, I don’t know how to tell it without starting from the beginning. Without what happened last year, I wouldn’t be pregnant with this one now. I would’ve been thankful but there is a deeper understanding of grace and gratefulness that comes with this pregnancy. In the last couple years of blogging, I’ve enjoyed documenting our lives here and it just didn’t seem right to come back without a proper explanation of why there was a gap in the archive. Thank you for reading and I’m excited to be back. I have a backlog of Dug pictures sitting on my desktop to share 🙂

 

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8 thoughts on “Back with some news

  1. Thank you so much for sharing such a personal journey with us! I haven’t yet experienced it myself, but based on the experiences of others around me, I understand that pregnancy is an emotional roller coaster – the ups and downs, and the curve balls too! I am so glad that you, your baby, and your husband (and of course, Dug!) are doing well at this point. Keeping good thoughts about your growing family! xx

  2. Wow, what a ride!
    I’m 10.5 weeks pregnant today, and we just had the Materni-T21 scan which is the blood test that can tell with 99% accuracy whether your baby has any chromosome anomalies. Did they not offer that to you on this pregnancy? Seems like it could have given you some peace of mind way earlier in your pregnancy! I’m really sorry about your initial loss, but congratulations on this new healthy baby!

    1. Congratulations! I hope first trimester is treating you well! I’m glad you got to take the Materni-T21. We were offered at week 10 but was told that if we were to wait one more week and do the screening (since it was paid for by the state) and if it turned out abnormal then the insurance pays for either the Materni or CVS. What happened in the first pregnancy actually wouldn’t have been caught on the Materni because of it’s mosaicism so we went with the CVS. Isn’t it amazing all the testings we have out there these days? It’s all so new to me. but congratulations on your little one – take it easy!

  3. What an amazing story of strength. First I just want to say how sorry I am for your loss. There is nothing worse. We went through so much losing 4 pregnancies before my daughter was born and even her pregnancy was considered a threatened miscarriage. It is time for you to enjoy and look forward to this new little soul as you have already been through so much. I am so happy for you both! It is such a blessing and I can’t wait to hear more about her!!! Nicole xo

    1. Thank you! I’m sorry to hear of your loss as well. Oh, I’ve been so humbled by not only my own experience but other’s alike. Makes me appreciate all the babies out there, like your bean!

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