Its almost been a year to the date that I last posted a blog. That is far too long. Writing here about this whole life experience has always been cathartic for me. At first, it was intended to help keep everyone updated on Sophia's medical journey, easily. Now, its for me. I way to really just get the clutter out. And after a year, man is there some clutter to air out.
Lets recap...
After Sophia's surgery this time last year, we MADE the most amazing improvements. She found her sweet sweet voice. Its still to this day the best thing ever. When you go 4 years wishing to her someone to call you mommy and for that day to just magically appear. Words cannot describe its sweetness. Today, we have quite the jabber jaws on our hands. I could listen to her talk all day. Some days, that just what I do. I love asking her to tell me a story. She makes up stories and she just gets to talking away as I get swept up in the miracle that blesses me daily. Granted, her speech still needs help and we have therapy weekly. She still has a trach and lets face it. Her talking at all and talking so clearly (at times) around a plastic straw in your throat still wows the keenest of doctors. The following May, we had another trip to the hospital to see if she was ready to cap at night in order to get her trach out completely. Here we hit a little wall. She is not ready. We are still capping but we are at a fine line in her care where we are tip toeing between taking the trach out because she is breathing so well and keeping it in because she cannot swallow. Safety first. We are keeping the trach in until she becomes more stable and in control of her swallow and secretions. She is still fed all through the gtube. We will get there. She has shown us that.
In the mix of all of this, John and I decided we were ready to expand our family of three. We actually we decided this years ago and after a year and a half of trying we conceived in Feb 2016. It was the best thing in the world to tell Sophia she was going to be a big sister. Immediately, she got it. She was super excited. Then as life has its own plan. We started to loose the baby. IT was without a doubt one of the saddest experiences in life. We just didn't one day loose the baby. We had to watch has the baby became no more. I had lost all of my amniotic fluids. See babies our essentially fish, they need this water to grow and develop vital organs. At first, the couldn't explain the loss of fluid. They initially suspected the baby had no kidneys or non-functioning kidneys. It was a two week whirl wind. I was swept to various doctors and specialists for more ultrasounds and tests, each with the same response. The baby would not survive or develop any further without fluid. I was 15 weeks. Critical time for lungs to develop. The next phone call I received was to set up surgery. He was a specialist with a heart of gold. He took his job with the upmost seriousness with just the right about of compassion and tenderness. He was so good. He called me several times on his person cell to assure me and check on me through the process. They knew time was sensitive and the most sensitve timing was to keep a mother from carry heartache longer than she already will. They set up surgery for me on a Sunday evening. I had to be squeezed into the rotation so my actual procedure didn't start until 11pm. The physical pain I was feeling that day kept the emotional pain at bay until I went into the OR alone and was strapped to the table. It was here in that moment, I cried so hard for the baby that would be no more and the baby I will always think about. In those few minutes, there were nurses on each side of me that grabbed my hands and squeezed tight. One, lean down and whispered in my ear, "we care about your baby, too". After that, I was out. I heard them say give her a little more (sedation). Thank you for that. I will never forget that experience. It was again one of the most difficult times in my life emotionally. Children have a way of working so deep in your heart.
Now, I am a few days short of a year since we lost our second child and a few weeks away from giving birth to our third. Life has a funny, warm way of working through the toughest of times. When you expect it least and if you look and appreciate it just right...life is right here.
So here we are... Sophia is continuing to do AWESOME. Talking, growing, starting kindergarten in the fall. As a family, we are settling into our new home and getting ready to welcome a new baby. Sophia is without a doubt going to be the best big sister. We are so excited to find out if it will be a boy or girl. To us, healthy is all we want so we are so praying for a healthy happy surprise. Pray with us and for us. Heartache is hard. Happiness makes it all worth it.
