Today, I am 28 weeks and 4 days pregnant with Regina. I only know this with that much precision because I went to see the high risk OB again today. We have been doing monthly ultrasounds to check on her and make sure she is not developing any other Down syndrome-related complications, and so far she has been looking great, thank God. Her growth is right on track, her digestive tract looks good, and my fluid levels are normal. Her heart defect is the same, of course, but right now it isn’t causing her any distress. My high risk OB says that given her growth and activity level, she looks like a happy baby. He told me babies that aren’t feeling well stop moving around as much, and instructed me to start nightly kick counts. If I don’t count 10 movements in 2 hours, then I call my OB immediately. Kick counts are particularly important for babies with Down syndrome because there is a higher risk of stillbirth associated with it. Also because of the higher risk of stillbirth, I start doing these ultrasounds with the high risk OB weekly starting late next month as well as weekly non-stress tests with my regular OB. He advised that I have my hospital bag packed next month, just in case. He does not anticipate that I will deliver early unless some unexpected complications arise. However, when everyone in one of the numerous Down syndrome groups I joined was polled on when their babies came, almost every one had their babies between 29-38 weeks. Most of them were in the 35-37 week range. That would make Regina my first Christmas/New Year baby. We shall see what happens. The longer she stays in there, the better, obviously.
So, I am getting about a month break from high risk appointments. I do my glucose test next week (it feels surreal having a normal pregnancy appointment for once), and then I can try and relax and enjoy the rest of November. I’m going to try and use that time to interview more potential nannies and look at more schools for Ruthie. So, “relaxing” relatively speaking. Then, all of the madness starts with keeping track of Regina and making sure she is still growing (sometimes babies with Down syndrome suffer from intrauterine growth restriction and have to be delivered early) and her heart is still functioning well. Then, once she is delivered, the real madness starts with trying to get her to grow as much as possible to make for a better open heart surgery. Hopefully she doesn’t have feeding problems. And hopefully she doesn’t get sick (hello, cold and flu season) because that would push back her open heart surgery date, which would get dicey if she is already going into heart failure. After she arrives, please don’t be offended if I don’t let you see her without a flu shot, a confirmation that you haven’t been exposed to anyone who has been sick for the past two weeks, a face mask, and plenty of hand washing for the time period before her surgery. I’m going to be that crazy mama of a heart baby, and I’ve come to terms with that.
In the meantime, I have prayed the Our Lady of Sorrows novena, the novena to St. Therese of the Little Flower, and I’m almost finished with the novena to St. Jude. I have frequented confession and gone to Mass more than once a week if I am able. (If it weren’t for all of my young children, I would be going daily.) And I am praying as many rosaries as I can. I try to remember to offer up all of my suffering. Never have I been so devout. I remind myself of a short story I read in school called A Good Man is Hard to Find by Flannery O’Connor. I know Flannery O’Connor was a Catholic and a Southerner and a better writer than I could ever hope to be, but her stuff is just way too bleak and depressing for me. Anyway, it is a short story about a selfish and manipulative old woman who takes a road trip with her family, only to have a car accident and be waylaid by a band of criminals. The criminals end up taking her family into the woods in small groups to shoot them. In the meantime, she speaks to the head criminal about Jesus and praying and religion, entreating him to repent. In the end, he shoots her and famously remarks after she is dead, “She would of been a good woman . . . if it had been somebody there to shoot her every minute of her life.” It is the same with me, isn’t it? If my life is happy and comfortable, I will go to Mass on Sundays and I will pray when I find the time, but truly taking up my cross and following Him doesn’t seem to make it that high on my priority list. But when a crisis hits my family, I am acutely aware of my dependence on Christ and suddenly make Him the priority to trump all other priorities. O’Connor, in her blunt and arresting fashion, lays bare this unfortunate human tendency.
O’Connor, of course, was not the first to point out that comfort in life leads to complacency in matters of the soul. “The Parable of the Rich Fool” in Luke, Chapter 12 comes to mind, as well as the later verses in that chapter on how we must be dependent on God and not ourselves.
Sell your belongings and give alms. Provide money bags for yourselves that do not wear out, an inexhaustible treasure in heaven that no thief can reach nor moth destroy. For where your treasure is, there also will your heart be.
Luke 12: 33-34
I bless the suffering that leads me to utter dependence on God rather than on myself. At least, I’m trying to. I still need heaps of grace.
Right now, my earnest prayer is that Regina’s heart be healed and she doesn’t have any other health complications. However, if that is not God’s Divine Will, then I pray that Scott and I are able to provide for her everything she needs and to provide for our other children as well. I also pray that I will be able to breastfeed her. It will greatly help protect her during cold and flu season, as well as help with speech therapy. I am trying not to fear (HA!) and trying especially to follow Mary’s perfect example in her fiat and remember that I am but a humble handmaiden of the Lord. May everything be done to me and my family according to His Will. Even the hard stuff.
Thank you for bearing with me through this excessively long post of my ramblings. I will provide some pictures of life lately, and especially of our little surprise baby Rhea, who has been such a comfort to me through all this. What a beacon of light she is. All of our girls are precious gifts, and I feel no differently about Regina.