Sophia. She's why I decided to finally take the plunge and start a blog. I have no idea if I'll actually stick with it - but I've decided it is really a good way of letting people know how she is doing, without sending long emails to people who really just wanted a short, "she's ok", instead of all the gory medical details that I feel compelled to include in the updates about her current medical issues. Actually, those long emails are mostly for me - and for Sophia. They help me keep information somewhere safer than my memory, and I hope one day they will be a way for her to look back and see how well God has taken care of her - over and over. How well He has taken care of our family. His mercy to us - to her.
In case some of you are coming in late, I'll try to succinctly flesh out some background that will, hopefully, help keep things understandable.
7 years ago I was pregnant with twins. We were soooo excited! In between 6 miscarriages, we had had 4 other fantastic children - Luke, Alix, Kate, and Noah. I was sure I would make it to 36 weeks gestation at least. Well, I was wrong about that. The girls were born at 32 weeks exactly - after I was rushed to the hospital via ambulance due to the placenta previa I had. Sophia Grace was 3 lbs 13 oz and Isabella Faith was 3 lbs 10 oz. Both did great initially. But by day 6, Sophia was struggling to keep her oxygen levels up, and she began to have swelling on her right side. I arrived at the NICU, just in time to see them finishing an x-ray of her. Glenn was at work. An hour later, they called me back to a room to show me some "very unusual results." She had something called Congenital Lobar Emphysema - a very rare condition. Her right lung was inflated to extremely large proportions - it had shoved over her heart and left lung, and caused her trachea to look like a "C", instead of a straight line down the middle of her body. The alveolar sacs in the lung were taking in oxygen, but unable to give off carbon dioxide. They were inflating like balloons. She was in serious danger.
They operated on her, our tiny little baby, within 2 hours and ended up having to remove all of the right lung. The neonatologist did come out once to tell us that it was "touch and go". They didn't know how her left lung would respond to taking on full oxygenation duties for her whole body. But God was merciful. He orchestrated things perfectly - she did great. Her left lung worked beautifully.
Over that first year, she developed concerning symptoms and by the time she was 11 months old, after several hospitalizations for pneumonia, etc. (including 2 when we were in different states on vacation), an ambulance ride to the hospital because she turned blue in my arms at home, she was admitted for croup. And within 3 weeks, diagnosed with another rare condition - Postpneumonectomy Syndrome. Because of the space left in her chest after the lung was removed, her left lung had grown extremely large, and pushed her heart to the extent that it malrotated to her lower abdomen.
Her trachea was soft and collapsing inwardly when she inhaled - a separate (rare) condition called tracheamalacia. Because of its "collapsibility" (word?), the lung was able to shift as well as the heart, and it was being squeezed between her spinal column and her aortic arch. She was almost in respiratory failure.
Surgery was performed and a saline breast implant inserted into the cavity where her right lung had been. As the cardiovascular surgeon filled it with fluid, it pushed back her lung, heart, and airway in a more midline position. She did have some very serious complications after the surgery, including ARDS and drug withdrawal. But again, God was merciful. He gave wisdom to her doctors, and strength to her little body. She recovered.
Here is a copy of an email I sent to a friend recently, remembering that time..
Not sure anyone is still reading at this point. :) So much for being succinct.
But, as I said, this is mostly for our family. For Sophia. Someday, I hope she'll read this, and be on her knees in thankfulness, again.
The reason I have started this blog at this point is probably starting to become clear. Sophia is currently struggling with postpneumonectomy syndrome again. I'm going to see if I can figure out how to post the other emails I've been sending to my family and our close friends the last couple of months.
So even though this might seem a little backward, it's the way I'm doing it! :)
|here she is after her pneumonectomy (she's about 2 weeks old) - see how little she is compared to the passy|
|the girls - ready for a trip somewhere - Sophia's oxygen tubing in place - about 2 months after the saline implant surgery (they are about 14 months old here)|