I'll start with the positives first. His little bowels looked better, so much so that they didn't even mark him down as having an echogenic bowel. That's certainly good news. I also still have some placenta previa, but hopefully that will move on its own prior to delivery. My subchorionic bleed also looked better. It's still there, but it's definitely not as worrisome as it was before. That's all positive news. The ironic part is that the bleed has been worry #1 this whole pregnancy, and now it has taken a total back seat and we don't even really talk about it during our appointments. There are other things to worry about...which leads me to the, errr, not so good stuff.
Our little boy's femurs are still measuring short and are not within any normal variants. My optimism that maybe things just weren't measured right the first time didn't hold true. His femurs are also definitely curved. One of his femurs looked really malformed and the other looks like it has mild curving. His other long bones measured okay, but his chest measurements were a little off. In a normal chest view, usually the heart takes up a 1/3 of the chest cavity. When looking at our little boy, his heart clearly takes up way more than a third. This is a big concern that has never been noted during previous ultrasounds. When you couple these things together, the most likely diagnosis right now is some form of skeletal dysplasia. There are hundreds of different types of dysplasia and the outcomes vary widely.
Right now, we're dealing with potential outcomes of our little boy leading a relatively normal life with some physical limitations to our little boy not making it. The statistics on skeletal dysplasia are also varied and I refuse to Google it too much, but Children's Memorial Hospital in Chicago states that 25% are stillborn and 30% die within the first 6 weeks. SOOO, that's scary. Nonetheless, we are dealing with quite a range of potential preparations, emotions and facts. The most worrisome part right now is his chest / heart.
How do I feel?
Pretty much the same as I feel every time we walk out of one of these 'big' appointments. Like the rug has been ripped out from underneath me. I swear if I shed another tear in front of another random medical person I'm going to.... I dunno. I'm just tired of being told it's okay to cry and that they're sorry. I don't want anyone to be sorry. I want someone to fix it... to tell me it's going to be okay and that it really be true this time. I absolutely adore the doctor we're seeing now at Duke and when he looks at me with those sad, sorry eyes my stomach drops. I know he's sorry. We're all sorry. But, we have to go on...
There's a part of me that still hopes for a miracle, but I'm afraid. I'm afraid to be too optimistic, too hopeful. There's also a part of me that just wants to pray 24 hours a day that a miracle will happen. Then, there's a side of me that isn't really sure what to pray for. So, right now, I'm praying for strength. Strength to endure whatever lies ahead. Strength for us. Strength for our little boy. Strength for our precious daughter. Strength for our doctors to help us through this in the best medical way possible.
I never ever, ever, ever in a million years thought this would happen to us. Isn't it funny how that's one of the first things you say when something bad happens? Why us? Not fair. In some moments, I see all the hopes for our perfect little family fly out the window. I worry about how he will be accepted. I worry about how he'll feel about himself. Then, I remember that we need to pray for strength. Strength for all of us and I try to remember these things...
- The things which are impossible with men are possible with God (Luke 18:27)
- Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand (Isaiah 41:10)
So, what's next?
Right now, I have more questions than answers. I would just ask that you remember us in your own way. Please pray for us as we move forward in the coming weeks and months. Praying is all I can ask for.... Pray hard. Ask others to pray. We need everyone's prayers right now for our family.
I don't know how we're going to handle the logistics of all this just yet. We 100% know that my care is totally being transferred over to Duke and that's where we'll deliver our little boy. Obviously, this isn't as easy as just rolling 10 minutes down the street to our nearest hospital. We also know he'll be in the NICU and will be immediately evaluated by geneticists and pediatric specialists. All of this feels so foreign right now and we don't really know what to expect about how long we'll be in the hospital or what types of help we may need when the time comes.
In the coming days, I'm going to try to figure out what we'll do when labor starts, but right now I just need time to process it all and start figuring out potential solutions. I also need to stop worrying about what we're going to do if the little man tries to make an appearance on our long drive to the hospital.. :) Ugh. That would put my whole fear of merely crying in front of medical staff to shame... delivering on the side of I-40 would take my inhibitions to a whole new level. :)
That's it for now... I'm probably going to start posting more regularly now; it helps to write it all out. I may also make my blog private, or start another private blog all about our little boy. We'll see...
PS - A HUGE thank you to everyone that has emailed, sent Facebook messages, cards, etc. We need your support, words of encouragement and prayers more than ever. When things get tough, it's nice to know you all are there supporting us in this journey. I also just have to say that I absolutely have the best partner in the world going through this with me. Mr. Man has been amazing. When we get back from these appointments, I just want to crawl into a ball and disappear for a bit. He just lets me be and he handles The Babe. In fact, I hear them downstairs now dining on a delicious dinner of fish sticks and applesauce. :) Gotta love that man for taking charge and being an absolutely wonderful father, husband and friend.