Monday, August 22, 2011
The hand of God
Sleepless nights have gotten the best of me. I sit here cruising the www and I start to think about how God has touched and intervened in my life in so many ways lately. I will never forget the day we wen to see Dr. Roten for our fetal echo to get our exact diagnosis for Brinley I knew it was something severe. From what the perinatologist was saying I just knew she was going to tell us it was Hypoplastic left heart syndrome but it was the complete opposite. I had read so much on CHDs that I knew exactly what she was talking about. I didn't even cry that day. I knew it was bad but didn't know how bad. Eric cried. I cried for him when we left. I know he was still holding out hope that it wasn't going to be "anything". I tried to tell him but he just kept trying to reassure me. On our drive home Dr. Rotten called me to ask me if my daughter took gymnastics. I thought that was strange but I said yes and then she asked if Chloe had a lil girl in her class named Kenzie. Yes, she did and then Dr. R told me that she has the same diagnosis our baby has. I cried and cried. I immediately got off the phone with her and called Kenzie's mom. God knew I needed them. When I first learned Brinley had a CHD I went straight to a great friend/ archnemesis by the name of Google. A lot of pregnant moms come across the website Babycenter. They have several groups for all kinds of things moms can talk about. The one I went to was "babies and children with heart problems". I put up post in a total panic about what was going on and all the information we were getting from our Dr.s. I got a lot of comments to my post but only one person emailed me. Her name was Dara. She was just what I needed and God knew that. She was also pregnant and we emailed one another about our babies. She filled in the blanks for me about things I had questions about and it was nice to know that I was not alone. You never wish any of this on anyone but at the time you feel like no one will ever know what you are going through. You have to mourn that healthy perfect baby you thought you were going to get. Instead you learn to love and anticipate a totally different PERFECT baby. It took what seems like forever for me to get to that point. I know the exact minute it happened to me. Dara had her son and I had not heard from her in a while. We all know how much time our newborns need. When she did write back her email just turned a page for me. Her son has a different CHD from Brinley but the thing that stuck out the most was how she told me how "normal" it was to have her son home. After that email I got excited again. Don't get me wrong I was still scared but I had hope and faith beyond what I ever could have imagined. Thank you, Dara. The least I can do is let everyone know what you did for me. After Brinley got here. I won't lie about how afraid I was. I had it in my head that we would be going home in a few days with little intervention to her disease. She was doing so good and breathing room air. The next morning my whole life was turned upside down. The surgeon phoned to let us know that our cardiologist had missed something on her fetal echo and her main arteries to her heart (transposition of the great arteries or TGA) were switched and she would be going in to surgery at 3pm. Most of you know what followed after that. A very long and emotional 21 days. The day after surgery was the hardest. To see your child at 3 days old with their lil heart just beating out of her chest is nothing anyone can be prepared for. I had a meltdown. The chaplain that had baptized Brinley came by to see us again that day. God knew I needed her. We prayed and prayed. She knew I was struggling and knew just what to say. If she was not available, she made sure another chaplain came by each day to check on us. The day they came to close up her chest a chaplain just so happen to with us praying. They had to ask everyone to leave the PICU. They do this procedure right at the babies beds. The chaplain never left Brinley's side. The Dr's allowed him to stay with her he would come out a give us reports in the waiting room. God knew I needed him. While in the waiting room I met another hand of God. Another family was there with their Brynlee. Heroes in their own right, the Hogan's. Hestan and Brynlee are true inspirations. Melissa, I dont know what to say about. I pray I can always be half as strong as she is. They give me so much to look forward to. I will never forget "God gives special children to special people". This was another hand of God. Finally but I definitely know not the last is Janet. I know I have blogged about her a lot but just to remind everyone, she is a Nurse Practitioner at Cook's that specializes in Hypoplastic hearts. God knew I was struggling. She knew exactly what to say and when to say it. She put me as ease and still does each day I speak to her. These babies are her babies. You can truly see that God knew this was the job for her. She is so passionate. The day we sat down with her to discuss Brinley's heart I thought I was going to have a nervous breakdown. I just doubted my strength. She gave us drawings of her heart before and after. It is and will be amazing. Each drawing showed what each surgery will do for her. My moment with her was when she said "the heart is a muscle and as a muscle her heart is perfect. We just need to go in a rewire it so that it can circulate correctly.". I hope and light at the end of the tunnel was all that I was looking for and all of these wonderful people have given it to me. God knew I needed them.