Lautz of Love: Why Blog?

Wednesday, March 19, 2014

Why Blog?

I have been told that blogging can be therapeutic and will be something we can look back on and cherish forever. So, with that I am diving head first into the world of blogging.

I will do my best to keep you updated on everything going on with Sadie and will ask that if you are reading this, that you commit to praying for our family. It may seem selfish, but it is what we need at this point.

I have really been struggling personally with "how to pray" for months now because as a mother I only want what I see is best for Sadie. I want her to live an easy, pain free, fun, and exciting life. I do not want her to feel pain or to suffer in any way. I want to take her pain away. Unfortunately, that is not possible and I know that. As a Christian, I know I need to pray for God's will for her life and that can be a scary thing. What if His will is not for her to have that carefree life, what if His will is something greater? When we look back in years to come, we may be able to see some of what He sees, but right now it is so difficult. When I think about "unanswered prayers" I am often reminded of a prayer I had in middle school. I was deeply "in love" with a boy and just wanted to "marry him one day" and would pray often to God about this. At the time, it seemed so important! Looking back it is very easy to laugh and to thank God for not answering that prayer as He blessed me with the perfect man for me in Zachary. Now this may be a silly example, but it does show that we do not always have clear vision in what we ask for. So, I ask that as you pray, you be specific and pray for His will. But, along with that, pray for wisdom for everyone involved in the situation, pray for peace and patience. Pray for comfort for our sweet girl and for us to see and appreciate each miracle. There are so many things we need, but the most important is our Creator's touch on our lives.

So, I ask that you just simply pray and if you are at a loss for words, just remember Romans 8:26-28. "And the Holy Spirit helps us in our distress. For we don't even know what we should pray for, nor how we should pray. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God's will. And we know that God causes everything to work together for the good of those who love God and are called according to His purpose for them."

Thank you all for your love and support, we are eternally grateful!

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Sadie's Story

We first found out we were pregnant again the week I went back to work from summer vacation. We were shocked and thrilled! The pregnancy was just like my first until we went in for our gender ultrasound at 20 weeks. We were at the ROC and I will never forget the words Dr. Gottier said to me. He was reviewing her ultrasound and started by talking about how small she was. I was listening, but I was not worried.. after all, I am small and so is Kinsley, my oldest daughter. This was not something I was worried about at all. Then things changed, he told me I needed to look at the monitor closely. He pointed out that it looked like her heart was missing a chamber. Then he pointed out that one of her kidney's also looked like it was full of water. Next, he pointed out a sack full of fluid on the back of her neck, called a cystic hygroma. Finally, he informed me that I should get an amniocentesis because generally babies with these types of health issues have an underlying genetic issue. I was terrified, but I held it together in the room. As soon as I got outside, I began to cry. Why was my baby sick? What were we going to do? As I drove home, I could do nothing but pray and listen to Christian radio- I knew it was the start of a long journey. We decided to get the amnio, so we would know what we were dealing with and how to proceed. It took way longer than they initially told me for me to get the full results back- but we learned that she had Turner's Syndrome. I had never heard of Turner's before but immediately began learning. From that point on, we began going to many visits so we could make a plan for our sweet Sadie. We met with the ROC, changed to a different OBGYN so I could deliver downtown, met with a genetic specialist and met with the Dr. Lacey. When we met with Dr. Lacey, we determined that Sadie had a variant of hypo plastic left heart syndrome. She was not a true hypoplast, because she did have her left side but it was underdeveloped. Most babies with HLHS undergo a series of three surgeries, starting with the Norwood. Because of Sadie’s genetic condition, Turner’s Syndrome, the Norwood was not a good option and she would only have a 10% chance of survival. However, the cardiologists at UF were confident that a different procedure, the Hybrid procedure, would be the best chance for her success, so we agreed upon that route. Wednesday, February 26th I went to the ROC for my normal check up. They measured her stats and found that she was 4.2 pounds, then Dr. Gottier decided he wanted me to get to 37 weeks and then get her out so they could start working on her. So, we started planning and decided March 10th would be the day. I was excited but nervous! Monday, March 10th we arrived at the hospital at 7:00 am so they could induce me for labor. They broke my water at 7:52 AM and things slowly progressed. Around 5:00 PM, we were finally ready to go. I can remember being terrified when they told me it was almost time. Satan grabbed a hold of me and put sheer terror in my heart. Suddenly, I did not want her to come out. I knew she was safe inside of me and wanted her to stay there. I began praying and Zach began praying and I knew that it was all lies. At 5:42 PM, we welcomed Sadie Grace Lautzenheiser into the world. She came out at 14 pounds, 11 ounces and "pink and screaming" which was our first miracle. Then, I got the chance to hold her for a few minutes before they rushed her to the NICU! This was amazing as they told me I only had a slim chance of being able to hold her! Sadie's first surgery, the hybrid procedure, was originally scheduled for March 16th but was pushed back due to an e-coli infection. Dr. Ceithaml and Dr. Shillingford performed the second hybrid surgery at Wolfson's on Sadie when she was 16 days old. They put a stent in her PDA to keep it open and put bands on her pulmonary arteries to help control the blood flow to the lungs. Sadie made a great recovery from surgery, but struggled with eating and was finally released April 16th. Sadie stayed hospital free until May 28th when she was admitted to All Children’s Hospital with a high fever. After running some tests, we determined she had her first UTI. Her pesky kidneys and ureters were showing us they needed fixing. For the next three months, Sadie was in and out of the hospital with UTI’s for what seemed like every other week. It was determined she would need bladder surgery. We started with a small procedure in hopes that it would solve the problem, but it did nothing. About the same time that her urologist decided he wanted to do the bladder surgery, it was time for Sadie’s second heart surgery. After many conferences, it was decided that Sadie would undergo bladder surgery first to ensure she was healthy enough for her second heart surgery. Sadie was still struggling with eating at this point so the doctors decided to put in a G-tube at the same time. In November of 2014, Sadie underwent both surgeries. When her urologist, Dr. Barazza, came out of surgery he said he had never seen anything quiet like Sadie. She had four ureters instead of two, two were oversized and had to be shaved down because they were improperly connected. Then one had to be reconnected to her bladder because it was actually attached to her uterus instead. After we conquered the bladder reconstruction and G-tube surgery, it was onto heart surgery. Sadie had her second open heart surgery January 21st. This time, they removed the bands off her pulmonary arteries and patched them the best they could, removed the stent from her PDA, reconstructed her aorta and added a section to it, and closed one of her VSD’s. She was a rock star and the surgery went just about as good it could. Post surgery she kept getting high fevers and we were stuck what started as a few extra days. At first, Sadie’s fevers went down and she started to return to normal, but then something seemed off and it was way off. Overnight, Sadie had developed a chyle and her left side of her chest was filling with chyle. She was emergently re-intubated and we realized we would be staying a bit longer than we bargained for. Sadie did make a quick recovery and was able to go home within a few weeks! The first year of Sadie’s life was rough, to say the least. But, since Sadie has turned one, we have spent zero days in the hospital! She is finally thriving! She is laughing, smiling, rolling, sitting, finally standing and drinking almost all of her bottles. Although we do have more cath’s and surgeries ahead, we are so grateful for where we are and the blessing we have received in Sadie Grace!

Lautz of Love

Our love

Wednesday, March 19, 2014

Why Blog?

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