Thursday, April 15, 2010

Today's Update

Today was the first time I'd been able to see Ethan since the diagnosis of his Trisomy 13, which has now been nearly a month ago. Although I've been praying hard for God to carry me into this appointment with confidence, I have to admit that I felt very sick to my stomach as I laid down before the ultrasound began. I just didn't know what we'd see or hear from the doctor. Here's what we've learned today:

The Good
1. His face does not appear to show signs of a cleft lip/palate, and everything else on the face appears 'normal' (or at least she didn't mention anything else being wrong)
2. His heartbeat looked good, there are 4 chambers, and as of right now she could not confirm that there was definitely anthing wrong with the ventricles

The Not-So-Good
1. One of his kidneys is still extremely enlarged due to fluid buildup, while the other appears fairly normal
2. There is a buildup of fluid around his brain, a condition known as Dandy-Walker Syndrome

Of course, the abdominal wall defect is still there, which is not new to us. The doctor did at one point make a comment that with all of the severe conditions that Ethan has, he will most likely be a baby that will not live long. While this sounds like a slap in the face, I know that she is being honest with us given the statistics about Trisomy 13 and the congenital abnormalities associated with it. I didn't even cry when she said that to us, but instead simply nodded my head in understanding. For some reason I wasn't filled with a sense of dread or defeat-perhaps it's because I'm not ready to throw in the towel yet. I even told her at the end of the appointment that I'm not giving up hope for this baby. There's no way I'm doing that just yet. I know the odds are stacked against Ethan, but I'm leaving his fate in the hands of God, as opposed the statements of the doctor. Just like they've said, every baby is different. If they can't guarantee me he will survive, they also can't guarantee me that he won't. I'm still remaining hopeful that maybe God's will is for Ethan to come home with us, whether it's for months or years.

Our next ultrasound is not for another 5 weeks. I had to schedule it out a bit further so that it's 2 weeks staggered from the other doctor appointments. The good thing is that we actually got to take home some pictures from this ultrasound. The last two we had (where abnormalities were detected) were not given to us since they had to keep them for examining. A good friend of mine had given me an adorable picture frame a few months ago that has the silhouette of a pregnant mother on it. In the belly, there's a hole cut out for an ultrasound picture to go in and the top of the frame says "I love you already." I've been waiting to get an ultrasound that acually looks like a baby to put in there. The last one we got was at 11 weeks, and it just kind of looked like two round balls. The one we got today will be perfect! You can actually see his face and profile.

I'm sure I won't have any real news to update you on for the next few weeks, but I'll be sure to post pics and any other random thoughts or emotions that I'm feeling. For now I'm just continuing to pray that Ethan grows and develops at the rate he should, and that his heart, brain, and other organs will be okay. Thank you again for all of your continued thoughts and prayers.

Also: Keith got to feel some of Ethan's movements for the first time this past week! It usually takes a few minutes of his hand being on my abdomen before Ethan will decide to move. He was pretty entertained by it & made the comment that it feels like my organs are spasming! Hopefully the movements will continue to get stronger and more "baby-like" as the weeks go by :)



  1. Your posts leave me speechless, but I just want you to know how much your words touch my heart. I am astounded by your strength and faith. I think of you everyday! I'm so glad you got to see Ethan's sweet face today. You keep hangin in there, girl! God is holding you! We all love you so much!

  2. awww... i'm so happy you guys got to see his sweet face and share in his little kicks! don't worry, i'm sure he'll be kicking you awake at night before too long!

    it sounds like good news so far.. we'll continue praying for you guys. god is great... and i'm so happy that you have a peace and an optimism. ethan is lucky to have you as his mommy. whatever time you have and experiences you share are such a blessing.

  3. Ashley - keep that positive outlook and we will all continue with the prayers. I think of you and Ethan often and the faith you share with all of us. Wish you were here!