This has been the most unbelievable week of ups and downs and ups and downs. No matter what the reason, I feel so much better to be home again. Wednesday it felt so good to just do things for myself. Cook (aka heat a casserole someone from Tim's work brought by), fold laundry, dishes, and of course be with the kids...... crazy how good that bit of normal felt!
Of course, Thursday I was completely exhausted and spent most of the day trying to force my body to continue to cooperate with my efforts of the day before! Thursday night I lost all semblance of control over my emotions again as I was forced to face the reality of leaving my house. I even said to Tim, "I just don't want to leave the house at all ever again. I will stay here until she's born and then we can go from there."
Granted that could be a February now and it's obviously not a good plan anyways, but still!
Friday morning I forced myself to call my regular OB and see if he had any appointments for that day. Surprisingly, he had one for 9:00 am so we quickly dropped the kids off with a friend and headed into town. The perinatologist from Mayo had called and talked to him about the results of the MRI, the hospital stay in general, and I'm not sure what else. Apparently the last thing she said to him was, "I don't think we are going to see her again."
I concur, but apparently my OB thought this was pretty funny.
He hasn't actually seen the records from Mayo yet, but is trying to get them expedited so that he can look at everything for himself and come up with a plan for the remainder of my pregnancy. I don't think anyone knows what to do with my history of loss combined with the diagnosis we have on hand (which everyone agrees is somewhat ambiguous in itself).
Do we do the extra monitoring we normally do during the third trimester? Do we skip it completely? How often do I reasonably need to be seen? What type of delivery is best/safest/most likely to give us the most time with her? Is there a clock on safety if we decide on a VBAC (I guess rupture is much less of a concern without the pressure of the fluid)? Should I even be delivering in a hospital without a NICU just in case? For the most part, none of the normal protocols really apply and we will be guessing a bit from here on out. At least now we will be doing it with someone that I trust is actually listening to anything I say.
He's going to come up with a prenatal care plan this week and he gave me two jobs as well. One, I need to come up with her normal kick counts (10 in 2 hours is far more than she normally moves around so he wants to know what is normal so we can have a baseline). I also need to think about a wish list for birth. Mayo was into full birth plans for palliative care but we have many, many competing scenarios that make a birth plan a little tricky. He wants me to think about 5-10 things that are MOST important to me that we can prioritize regardless of the delivery scenario that ends up applying. Both Tim and my good friend Leigh pointed out that it is a sign of just how well he knows me that he gave me a job to do.
Still overwhelming and a lot to process/think through, but I feel a lot calmer with a plan developing based on what is actually happening rather than guessing or overanalyzing. In the meantime, we will keep on, keeping on!
We seen such an overwhelming show of support from our friends, family, blog readers, and even strangers. I have not been great about responding to every card, email, Facebook message, and comment but know that I am reading them all and every single holy card, kid's drawing, note of encouragement, etc. are all going into a box and I look through it regularly.
Community is a powerful thing.
You may remember we had a special visit from St. Gianna's gloves (see Day 7). During the visit, Kylee was asking questions about St. Gianna. We didn't have a good book that was written at the level of a six year old and the woman from the Shrine who brought the gloves heard me telling Kylee that I would have to look for one. She commented that she would check at the Shrine gift store and see what they had. Imagine my surprise, when in the mail comes the following little care package.
In addition to a book that is perfect for Kylee, she sent a very nice note, along with the story of one of St. Gianna's miracles, and a photograph of the family. That mom in the photograph above was told again and again that her little girl (also in the photograph) would never live to be born alive. Their journey was long and hard, but in the end God choose to grant a miracle through the intercession of St. Gianna.
We don't know if God will grant such a miracle for our Siena. While we surely believe in miracles, we know they aren't always granted (at least not in the ways that we think). As Tim, said, however the one thing the MRI did was guarantee that the credit will go only to God if He does. No medical doctors will be able to claim that a healthy Siena was predictable medically or that any intervention they provided saved her life.
If you are praying for Siena, we would love to know about it. Feel free to share pictures on our Facebook page of a candle you have lit, a saint who's intercession your have prayed for, a place you have prayer, or a scripture that speaks to you in this crazy time. For those who are not on Facebook, you can email a link to a picture or blog post or story to me at workplayread @ gmail . com (take out the spaces) and I will put together a post sometime in the future sharing some of the ways that this tiny little girl is uniting so many people together in prayers. If you are comfortable, include your location (general is fine such as state or region) and maybe a note about how you heard about Siena's journey. Also if you have a prayer request (especially for other families in difficult pregnancies right now) I would love to hear about those as well.
Here is the candle I made using a clearance pillar candle from Target, a glue stick and my printer.