Update

I just wanted to give everyone an update on our baby "situation." We had an appointment with my OB/GYN today. It was just a regular monthly prenatal visit, but I entered his office with a long list of questions. He was very patient and answered everything to the best of his ablilty. While his opinion on the end prognosis hasn't changed, it was comforting to gain a better understanding of Bella's condition as well as what I can expect regarding various scenarios for her delivery. We also asked for a copy of the specialists ultrasound report which was very helpful. I think there is something about seeing it in black and white print that helps clarify things more so than hearing a bunch of medical jargon that can be hard to retain.  I struggle with whether or not to share very many details about the actual report. On one hand, I want to paint a clear picture for all of you as far as what we are dealing with. On the other hand, the mother in me wants me to protect my baby from anyone ever looking at her as a "freak"of nature or something. We love our baby no matter what--no matter how long she is with us--no matter what she looks like--she is still our little baby girl.

Before I share more about what we have learned, I want to say this. We 100% believe in a God that could deliver a 100% healthy baby if that is what he chooses to do. If, however, that is not the plan He has for Bella, we will still praise Him. If he chooses to perform a miracle anywhere along the spectrum and our baby lives, but with deformities, or severe health issues, we will still praise Him. We will love our baby no matter what--every second of her life. If God chooses not to perform a miracle and I deliver our baby directly into his waiting arms, we will still praise Him. We trust that His ways are better than our ways and that His plan is for our good.

This is the basis of the specialist's report we received today based on the ultrasound we had at 19 weeks. The findings were suggestive of Amniotic Band Syndrome or Limb Body Wall Complex. Some of the abnormalities included both feet being clubbed, sacral cystic lesion (neural tube defect), a "disorganized spine" (curved and rotated in the lower spine, like scoliosis), and a large abdominal wall defect (which exposes the liver, bowel, and stomach).  While many of those issues could be fixed, especially if they were the ONLY issue we were dealing with, the combination of all of them, may be more than we can fix. The doctor said that the spinal issues and problems linked to that (nerves that control functions of the body, etc) are probably going to be our main concern as far as lethality goes.
So. I'm very sorry if that was too much information. I just wanted you to know. So, from here we pray like crazy. We pray for a miracle. We ask God for the desires of our heart which in this case, is a healthy baby girl. But overall, we pray that His will be done in this situation. We pray for strength and courage in the days ahead. We pray for wisdom as the end of our pregnancy nears and we have some very difficult decisions to make.

Many of the questions I had today revolved around the delivery. There are approximately a million different scenarios that we will be planning for in the coming months, but in a nutshell, they can be summed up into a few.

1) The baby is stillborn. At some point during the pregnancy, we notice that she is no longer moving, or at an office visit, they are unable to find a heartbeat. This is actually the doctors prediction on what he thinks is most likely to happen. In this case, they would induce me and I would delivery my baby girl.

2) I would carry to term or close to term and Bella's heart is still beating strong. Whether I go into labor on my own, or we come to a decision to induce for whatever reason, this is where the difficult decisions come into play. A vaginal delivery, would obviously be much harder on Bella, due to her abnormalities. A C-section would obviously be much harder on me. The doctors themselves say that they could be wrong--that we will not actually know they full extent of Bella's condition until she is out and they can evaluate her with their eyes (or the eyes of the NICU doctors/nurses). Therefore, as a mother, I would have to give her that chance. The chance to make it through the delivery process so that they can see what, if anything can be done for her.

3) If she survives delivery, we will then have to weigh the risk/reward of treating any/all of her conditions and, based on the doctors evalutation, decide where we go from there. The doctor basically told me that they will do as much or as little for her as we ask them to. How's that for pressure?

Are you depressed yet? I know I am getting there. While I feel hopeful, I also feel defeated. As if a small victory (carrying to term) carries with it so many more challenges (deciding on delivery, surgeries, etc). I would say that overall, though, I feel better today. Information is power, isn't that what they say. Having the report and being able to look up the medical terms for further explanation (and even horrific pictures :( ) has actually been helpful and comforting in a weird way. I feel better equipped to handle things down the road if things do play out as the doctors believe they will. I think our overall attitude is that we hope for the best, but prepare for the worst. There is a fine line sometimes between Faith and Denial. I believe with my whole heart that God CAN heal Bella. Only time will tell whether He WILL. At this point, I am at peace either way. I know that that peace only comes from Him, because there is absolutely no logical explanation for it.

I want to thank you all for your prayers. I received so many messages today from people letting me know that they were praying for me during my appointment. We truly felt your prayers. We felt God's presence with us, giving us a clear mind. I walked away with an answer to every question on my list. We have been so blessed by our wonderful friends and family. Thank you so much for being there for us over the past month and thanks in advance for supporting us in the months to come. We requested another ultrasound with the specialist and have one scheduled for August 9th. Bella will be much bigger by then, as 9 weeks will have elapsed since the initial ultrasound. We will hopefully be able to get a clearer picture of what we are dealing with. Plus, we will get to see our baby girl again! :)  We will then have an appointment with my OB the following week.


Love you all,
Mica