12/21/09

Really, I'm not avoiding you.

People may or may not have been wondering what I've been up to, and why in the heck I've dropped off the face of Blogland. Well...... lots of reasons. And I kind of already explained them through Facebook, then I realized that there are some people who don't get their updates that way. So this may be repeat news for some people, but just consider this news for the rest of you! :) And bear in mind, it's a detailed explanation of the last 10-15 weeks of my life, so it's quite long!


(copied from Facebook)
I'm only going to write this one time...
Okay, so people have been asking what's up with little Anastasia and what's the latest. So I'll start from the beginning, and update this as I go along so everyone can know without me having to tell the same story 5000000000 times! :) That can get a little daunting; I'm sure you understand.

WOOT! We find out we're pregnant with our third baby in mid-June. Everyone is elated.

1st ultrasound. It took seriously over an hour! The technician was very thorough, and good thing! She discovered that the right kidney appeared to not be dialating (emptying out), and she couldn't locate the stomach. She did tell us we were going to be having a girl (yet another WOOT!), and everything else looked absolutely perfect.

Following OB appointment. My doctor tells me that I have a condition called Velamentous Cord Insertion (VCI), which in layman's terms basically means that instead of the umbilical cord implanting into the center of the placenta (which is what happens normally), mine implanted on the side of the placenta. This can pretty much lead to insanely scary side effects, like the cord growing into membranes and blood vessels, which could cause your baby to bleed to death once your water breaks. I obviously wasn't too happy to hear that, and my imagination went haywire. HOWEVER, once I had a bit of time/common sense to do some research, I learned that my particular case wasn't life threatening to me or baby. Big sigh of relief! Though in the same breath, my doctor referred me to a perinatologist (baby doctor specialist) to have monthly ultrasounds done to chart progress and watch for anything else crazy.

2nd/3rd ustrasound. 2 Ultrasounds in one appointment! This was my huge, emotionally stunting day. I went in for a 'routine' checkup, and they did another ultrasound. I told this doctor & U/S tech what the first tech found in U/S #1. They confirmed everything, only to say that the non-dialating kidney was actually multiple cysts. This in and of itself wasn't too much of a scare for me, as it sort of runs in the family with that darn right kidney! The thing that really bothered me was that they once again could not find the stomach. The few reasons a stomach wouldn't show up on an U'S would be because it's not actually there, or it's not filling up like it normally should. Soooo......... the doc explained that his main concern was about the stomach not inflating, and he suspected that it was esophageal atresia. That pretty much means that the esophagus (the tube that carries food down to your stomach) didn't develop properly, and is not connected to the stomach. (It sounds way scary, but surgery is an option right after birth, and it's been done for about 30 years, so I'm not super concerned about that.) It could be that, or a genetic malfunction. Sooo...... off to the genetic counselor I go! (Keep in mind, Bryan is at home with kidlets # 1 & 2, so I'm hearing all this solo and relaying it to him via cell phone 45 minutes later, amidst a breakdown!)
Let me tell you, their job must be the WORST job ever. Because all they do is give you bad news. And not just bad news, but the worst possible scenario. He was telling me that our little girl could possibly have Trisomy 13 or 18 (which basically means that one's head & brain hasn't grown properly and have a death rate of 100% within one year). YIKES!!! And that the best option for me at that point was to do an amniocentesis. Let me tell you, that didn't sound like fun at all! The worst part was that he didn't even tell me all the major risks that would be; he really downplayed it and I wished he hadn't. It would have been nice to know everything ahead of time. Anyway, he asked me how my week looked, and for the most part it was empty. So he scheduled me for THE NEXT DAY!!!!!!

Amnio. I had to scramble to move around my schedule because he chose the ONLY day of the week that I had stuff going on. The nerve! :) Anyway, that morning I had to travel down to Children's Hospital for that amnio. There's nothing like a long drive down a congested freeway to get your nerves going! Once I got there, they did yet another ultrasound to find a good pocket of amniotic fluid, to take some measurements and to double check everyone else's findings. And guess what they found??? A STOMACH!!! It wasn't very inflated, but it was there! That's what I refer to as miracle #1.
The doctor came in to see me, he walked me through the amnio procedure a bit, telling me they wanted to keep me there for observation in case I went into labor, and to ask that stupid question: "what are you going to do with this information?" Meaning "are you going to terminate this pregnancy?" ummmm, heck no! So, once he knew that that was out of the question, he recommended that I wait to do an amnio if I still wanted one, due to the risks of pre-term labor (which that dumb genetic counselor didn't even mention!) and my gestation period (24 weeks). The only reason I even went to do it was because the counselor pretty much advised me to do so. Anyway, one disaster averted!

Ultrasound #4. Back to my normal OB. He took another ultrasound and found nothing that everyone else didn't see already. He also told me that my VCI was doing fine, no complications in that regard. Hallelujah, some GOOD news for a change! He said everything else was fine and that he would let the perinatologists handle the monthly ultrasounds and updates, and in the meantime, come back in two weeks.

U/S #5. Wow, I'm getting drained just writing all this! :) No new news, which is good news to my ears! The only tweak this time is that our little sassy pants isn't swallowing amniotic fluid, which at this point she definitely should be. That led the specialist to believe that it was in fact, esophageal atresia. And because of that, I have way more amniotic fluid in my little tummy than I should at this point! And it's all making sense to me... THAT'S why I feel so huge. I mean, I am literally a house. Already. And as of today (12/20) I have another 10 weeks to go. But it looks like I'm going to have a baby any day just by my size! And I thought girls were supposed to be smaller? :)
Anyway, due to all this extra amnio, the specialist recommended that I come back in 2 weeks for yet ANOTHER U/S, and at that point determine if I need to do an amnio reduction or not. A reduction is just like an amniocentesis (where they stick a long thin needle into your stomach and take out amniotic fluid), and the risks are the same. The only major difference is that I'll be 31 weeks rather than 24 weeks. Makes a huge difference in fetal development! The ultimate goal is to have me go full term, but as of today, it's not looking 100% that I will be doing that. But that's the goal. And another thing; I more than likely will deliver at a different hospital (Mary Birch) to accommodate for newborn surgery.

OB Appt. SO sad!!! My awesome OB told me that he would be indefinitely referring me to a specialist colleague friend of his through Mary Birch Hospital. I'm so sad, but happy too. Because my OB is totally awesome. I MAY have to go on bed rest (like that's possible, with a hubby in school and two boys under 3??? HA!). But I am definitely now delivering at Mary Birch, across the street from Children's Hospital. And I am super tired and sluggish already. And as huge as a house. And stressed all the time that I have LESS time than originally anticipated. UGH. But otherwise, in good spirits. Christmas does that to a person! :)

So, that's the scoop. I'm hoping I can keep updating this as I know more, but if anyone has any questions, you can always email me!

8 devoted readers:

Dan~Kerstin~Bree~ Baby #2 said...

I hope everything goes well for you and the baby.

Trisomy 13 - Patau Syndrome Support said...

Hello, found your blog via a trisomy 13 google alert...
Congrats on your new child... and here to tell you not to loose hope...

I have a child with full triosmy 13, she is still living and I manage a support community which loads of resources... please come visit our amazing community, and join the message boards if you would like to meet some families who also traveled the prenatal journey with this diagnosis.

You will be in our prayers.
ThereseAnn, mom to Nataila
http://www.livingwithtrisomy13.org

Melody said...

Wow, I had no idea that you were going through so much with this pregnancy. Thank you for sharing it even though I'm sure it was hard. You and baby are in my thoughts and prayers.

Raadgep Fam said...

What a pair we make. Hang in there! I love you

Tabatha said...

We are definately keeping you guys in our hearts and thinking of you often, I know that you and Bryan will have the strength to handle whatever challenge comes your way so stay positive and remember you are never alone. Love you guys.

shay said...
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shay said...

Sarah Sarah Sarah!!!!!! Okay....we need to talk. First of all, if you don't already have a Doc to deliver you at Mary Birch (where Vivie was born) go to Dr. Daneshmand.. he's seriously AMAZING. he's with San Diego Perinatal Center. AMAZING Man & Doctor.

Secondly, McKenzie (now 10) had VCI (which went undiagnosed, unnoticed until birth) and the chord had ripped away from the placenta almost completely--hanging my a thread by the time she was born. She could have died from that if we hadn't delivered 3 weeks early by just 'feeling like I should go in' even though I didn't feel like I was in labor. Anyway, cool--they have that under control with your babe and they're watching it via ultrasound.

Thirdly, McKenzie also had cysts, but they were covering her brain (not kidney). We had multiple U/S with specialists... they dissolved at 8 months in utero, after they all suggested we abort B/C they were CERTAIN she had trisomy 13 or 18 and certainly wouldn't live.
Look at her...she's PERFECT. We opted to forego the amnio b/c you're going to keep your baby and fight for her no matter what anyway...why create extra stress in her environment.

Fourthly, she had the amniotic fluid problem as well with too much fluid--it eventually just resolved itself. Maybe yours is worse-- but I just found your post so intriguing and all the parallels to my crazy pregnancy with McKenzie. She had other complications after birth---completely unrelated (she had major jaundice, almost blood full transfusion, then contracted hospital pure RSV, almost died... what a rollercoaster). Anyway, if you need to talk, email me & I'll send you my # McKenzie is PERFECT---early, but PERFECT.

Ruth said...

I hope everything turns out okay. You guys are in my prayers. Hugs!