Lautz of Love: March 25th: 15 days old

Tuesday, March 25, 2014

March 25th: 15 days old

Today was an exciting and scary day all at once. I got to hold Sadie again today and this time with her just being wrapped in a blanket. That was a wonderful experience that I will never forget. I also got to meet with the nephrologists and they told me that from their stand point, she did need to be evaluated but not until after surgery. Then, I met with the cardiologist's again. Dr. English said he is happy with her numbers and that they are ready for surgery. So, unless something crazy happens tonight they will start to fix her heart tomorrow. After he re-explained the surgery to me, this time in much more detail, we went over the consent form. Signing that piece of paper was definitely one of the scariest things I have ever done in my life. However, I know it is what is best for her! Later, the anesthesiologists came by and explained their part of the surgery and I once again signed more paperwork. Tomorrow I will sign the surgeon's paperwork and they will whisk her away. The surgery should last approximately four hours and we will receive updates throughout. I know those will probably be four of the longest hours of my life, but I know we will be blanketed in prayer and I can not ask for more!

Verse of the Day:
"God has not given us a spirit of fear, but of power and of love and of a sound mind."

I can still remember Mrs. Baxter quoting this verse to our cheerleading squad we anxiously awaited our turn on the mat. Those moments before they called our team's name were always nerve wrecking. My heart would pound, my hands would sweat and I would always need to go pee! But, Mrs. Baxter would pray with us, quote II Timothy 1:7 with us and reassure us that we were ready. Well today, she quoted it to us again and it took on a whole new meaning. It was in a text message that started with another mother whose daughter is also having surgery tomorrow. She too cheered for Mrs. Baxter (and now coaches with me) so Mrs. Baxter reminded us of the verse in the message. It is amazing to me how that verse has stuck with us and how God used it in that situation and will be with us tomorrow. I can remember as a high schooler quoting it over and over again in times of fear, and I will be quoting over and over again tomorrow. It is crazy how excited and nervous I am regarding this surgery. I am excited because I know this is the first step we need to take to fix her heart. But, I am nervous because it is a very big and scary step. However, in spite of my fears, I must lean on Him during these times. As I read this verse to Sadie tonight, I told her not to fear, but was obviously talking more to myself! Oh how I need to trust His word and believe that.

Praises for the Day:
1. Sadie's white blood cell count dropped by 1.
2. Nephrology finally gave us our consult and said they were good with the surgery.
3. We are ready to go for surgery.

Prayer Requests for the Day:
1. Pray for wisdom for the doctors, surgeons, anesthesiologists, nurses and anyone else involved in Sadie's surgery tomorrow.
2. Pray for Madison Del Valle as she has major back surgery to help correct her extreme scoliosis tomorrow. Pray for her doctors, surgeons, anesthesiologists, nurses and all others involved. Pray for her family and friends.
3. Pray for peace for me, Zach and all of our friends and family.

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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

Tuesday, March 25, 2014

March 25th: 15 days old

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