Turns out I’m a terrible pregnancy blogger. I know everyone wants info and details and I love you for it and I’m grateful you are along on this journey with us. Yet, I find it so hard to capture the ups and downs. Case in point. This post about her heat. I’ve been meaning to write it for weeks now, but the weight of it all just sits and consumes me and so I function in denial. If it’s not out there, I can put my head in the sand. Yet, that doesn’t change the reality, so here I am, with an update weeks later. 😛
Monday Nov. 6 was an appt with both my OB and then later with my MFM. My OB appointment was fairly routine and normal, for your average 23 week appt. We listened to baby’s heart beat, did a belly measurement, some vitals and I was on my way. By the time I made it upstairs to my MFM, he already had that paperwork in hand and greeted me with a warm, friendly face saying, “Congrats, we have crossed over. We can move from talking about death, to talking about life.” As he took measurements and watched her cord blood flow and about a million other things, he said, I’m fairly confident we are going to get this baby here and Friday night at midnight this magical thing will happen where she will be considered by every medical personnel: viable. It was the most incredible appointment with the most compassionate staff. Seriously, I wish y’all could meet them and just know how graceful and God-fearing they are. I left their office and feel in a heap outside the door just full on ugly crying. The wave of emotions of these last few months while simultaneously expecting death has just been surreal. To release it all was liberating.
But then Thursday. Y’all this roller coaster. This was the appointment with her cardiologist, in which he was just going to monitor her VSD hole. Such is life. Now that she is a little bigger, so much more was visible. She actually has a complete AVSD canal defect…..sometimes abbreviated as CAVSD. (I have now written AVSD so many times that my phone autocorrects AND to AVSD. :P) In good news, it is actually very common among babies with Down Syndrome, and so my heart team is well versed in dealing with it. In bad news, it means mandatory open heart surgery while she is still a newborn. 🙁 The working theory right now is that she will be born (Hallelujah!) and require a NICU stay to make sure her heart is stable. She will then come home for a couple months to try to grow and gain some weight. When it becomes obvious that her heart is not keeping up (usually about 3-4 months after birth), we will return for her open-heart surgery and roughly a 2 week stay in the ICU for monitoring post-surgery. I know this is common for kids like ours, but doesn’t make any of this any easier to process for this mama’s heart and emotional health and was a crazy end to a week that started on such a high. And yet, to God be the glory, she is still fighting like hell and we are on track to bring home a baby.
Time has done me good. Letting this sit for a few weeks brings clarity and perspective and I feel at peace. I know she is in the Lord’s hands and His plan for her is mighty.
When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.
If you are not familiar with the beautiful hymn, It is Well with My Soul, it is worth the listen. Every time I hear it my heart and sould feels at peace.
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