March 19th, 2012
We had our appointment today. We love our new doctor. It's a bit strange to realize we have a new doctor at this point. I've been with the same group for all of my other pregnancies. It seems that I am constantly getting reminders about how "each pregnancy is different". Alright already, I get it. ;)
So, some of the anomalies from the ultrasound last week were "cleared" as normal. This is most likely due to the babies movement, or possibly the techs experience. So, the spine is fine and the shape of the head is fine also. We definitely had a moment of wondering if our baby was going to be more "normal" than we had anticipated. However, that wasn't the whole story.
In the end the soft markers give a strong indication that our baby has Down Syndrome. There are plenty of soft markers that were missing, one example being the lack of nasal bone (meaning our baby has the bone). Also, just as a curiosity point, some children with DS do not have all three bones in their pinky finger (ours does). It's remains fascinating to me that a chromosome has such broad and strange affects on the body.
The soft markers present in our baby are a thick Nuchal fold (the skin on the back of the neck), cysts on the brain, vertically challenged (as Trever put it), and the heart.
We choose to do an Amniocentesis today. The main risk for miscarriage is when your water breaks, and although that is always a risk I generally have a very tough membrane and the doctors have had to work very hard during my 3 deliveries to rupture mine so I wasn't too worried about that. We expect to receive preliminary results in two days and final results within 2 weeks. If the test comes back without a clear chromosomal abnormality then we're back in the dark. The doctor is positive there is a "syndrome" so we'd just have to go back to square one.
The "bad" news is that the heart has a serious defect, it is missing the vertical separation between the chambers... so we have the 2 valves but right now they are operating as one, and we only have 2 chambers. I guess this is an "easy" fix after birth. We are meeting with a team of doctors at UW next week, one of which will be a Fetal Cardiologist. We'll have a fetal echo gram and then we'll know a bit more. There is a chance that the baby will need immediate surgery, but I guess there is a chance that it can wait a few days.
Our doctor thinks there is a strong possibility that we will schedule an induction at UW. Otherwise we'll be delivering at St. Joe's in Tacoma. There is no chance that we'll be delivering in Olympia. Can't believe I'll be trusting the Huskies to get me through this.
Another strange thing is that the umbilical cord only has 2 tubes, one artery and one vein (it's missing one artery). This means we'll be watching the babies growth later in the pregnancy but supposedly "it doesn't bother most babies". The one that is missing is the one that carries alcohol so I'm cleared to drink (JUST KIDDING!).
From this email you can probably tell that we are in better spirits and working with this change in our life (there were so many other possibilities that we are thankful to not be facing). That is true for this moment, but we'll see what tomorrow brings. We still so greatly appreciate your kindness and your prayers. Please email/call us to be in touch or if you have questions. It's a fairly lonely experience so we really appreciate open communication.
PS. In case we're not going through enough I had to get a shot in the ass. REALLY??? Come on!
I am with you on having to trust the Huskies! I will do your drinking for you until you are able to resume.
Seriously, take care and my thoughts and prayers are with you. You guys have beautiful babies--I will be praying for you.
You guys are braving this so well. I am still praying (and so is my mom). I told Mike today, "You don't know until you know" so I am praying that when your baby is born he/she will be as perfectly imperfect as your other 3. PS Are you going to find out now if it's a boy or girl? Just have to ask because you know I want to start shopping! :)
I love your openness -- it's just so "real". Thanks for sharing with us. Your sense of humor is wonderful too. You are awesome. Love you, JH
Hey there Girlie!
Thanks so much for including me in your email Peters. I was seriously just thinking of you the other day! I'm so sorry to hear about your current situation as I know it must be extremely scary entering the unknown. If anyone is able to take on a challenge like this though... its you and Trever. You have such a wonderful family and an amazing group of friends and this little baby will be blessed to have you as parents. Life can be so confusing sometimes.
I just want you to know that I'm thinking of you! I still want to see your house and meet your kiddos by the way!
It’s good to hear some relief in your voice! Did I mention the very best thing you can do for yourself is take it a day at a time. It sounds like you have an awesome team of professionals to help negotiate the curves that will undoubtedly be ahead of you. It’s amazing the neonatal options that are now available. Thank God!
Thanks for sharing! I’ve been thinking about you all day.
I love your sense of humor! You are so strong. Continued prayers coming your way!AM
Wow! You guys have been dealing with a lot. I'm so sorry that you've been going through this. I guess your instincts were right about this pregnancy. Please keep me in the loop. I will be praying for your family and the baby. Hang in there!
Wow Jennifer, I had no idea of the problems you were facing with this pregnancy. Thank you for including me in this email.
You seem to be handling this as well as can be expected. You, Trevor and your new baby on the way are in my thoughts and prayers. You two are such strong great parents, I feel if anyone could handle this type of situation you two can. You guys are amazing. Hang in there.
Jen and Trev- (I'll keep this short as I'm not very good at tactful words... :) That is better news than what you were probably unable to escape from thinking about all week. We have watched J's household with S the last 11 years, and have watched her needs overshadow the needs of the other 3 the whole time. The parents are NOT giving S the helps she needs either (or the others) and it is taking it's toll on everyone involved, and what future does it hold for S as an adult? I know all your friends think you guys are terrific parents and fully capable of taking this challenge on, and we fully agree with that, BUT please keep an open mind about the fact that you have another option and you don't have to accept this journey. We will love you and support any path you choose. I cannot begin to understand how you are feeling from one moment to the next, and I would love to give you each a huge hug. Your email sounds a little more lighthearted Jen so maybe with some time and learning this will seem easier for you guys. Please know we are praying for you all, and we love you all! ST
Thank you for sharing. I've been thinking about you guys nonstop since last Friday.
I also had an amnio done with E and it was a scary and lonely time for me. I admire your openness about what you're experiencing and hope that it leads to a lot of us reaching out to you. If there's anything I can do for you guys please let me know.
Oh Jen, I am so sorry to hear about these concerns. I can't imagine all the emotions you are processing right now. We'll continue to pray for this precious little babe. And for you guys too!
You are so considerate to still be thinking of bringing us a meal in the midst of all of this! Please don't worry about bringing one over! A few people from church brought some frozen meals over so we're doing pretty good.
The trip to Ethiopia was really hard, both emotionally and physically, but so good at the same time. So far things have gone pretty well since we've been home. Still adjusting to a lot, but we're gradually figuring it out! Joah is such a happy little guy--he's been lots of fun.
Thanks so much for the email. Please continue to let us know how you and baby are doing.
I'm glad things are looking more positive from your email last week. Did you already have the Amneo? I heard they are painful but you probably don't care at this point. I hope it will give you more information so that you can plan better. Downs Syndrome sounds like a good outcome compared to what you were looking at last week. I hope that you are in good spirits and trusting in God. I'm glad you like your new doctor. I hope you don't have to go to Children's but, if you do, you will be in such good hands and I will come visit you whenever I can to support you. I miss you and will continue to pray for your family and the baby. Are you telling me that after all these tests, you were able to avoid finding out the sex of the baby?
I feel like there is some good news in this message, but I sense an underlying sense of uncertainty still. Just know that we're thinking about you everyday.
Jen,Thank you for the update. It still seems there is concern but things change as the baby grows or more information comes through. We have a friend who granddaughter's head was shaped like a Down's child bu see was perfect when she came out. Hope you can be as lucky. But, if the circumstances are different we know you are a strong lady with a caring husband and a supportive family. You will find the strength to get through this . . . maybe one day at a time but that is all any of us can really live our lives. I am glad you are being referred to the Specialists, they well keep a close watch on the baby and you.
Our Prayer, CZ