Lautz of Love: March 24th: 14 days old

Monday, March 24, 2014

March 24th: 14 days old

I can hardly believe my Sweet Sadie is two weeks old today! And what is even crazier, is we still have not reached my due date. But, these past two weeks with our sweet girl have been wonderful!

When I came in, our cardiologist had just arrived and was ready to start checking her out. The first thing he did was remove the line that was in her mouth connecting to her belly (to pull air out.) He thought it was making her too uncomfortable, and I agreed. Then he checked her out, and we discussed the upcoming surgery. He said at this point, we are still scheduled for Wednesday. Her platelet levels did drop slightly today, but he said it was not past his threshold or the surgeon's and her white blood cell slightly elevated, so he ordered another urine culture. At this point, all of her blood and urine cultures have shown no growth, which points to their not being an infection; however, they are still slightly worried since her white blood cell count rose again. So, we are still just watching and waiting at this point.

After the cardiologist left, they let me hold Sadie. We got to spend a good hour and a half together and she was as cozy as could be. After I got done holding her, we put her back in the bed and she started fussing. We tried so many things to calm her down, but she was not having it. I am sure she is just hungry and tired of being in her little isolette, so I can not really blame her. At this point, I had to leave to go get Kinsley, but Laura got her to calm down by letting Sadie suck on her gloved finger for 20 minutes, she is so sweet!

After I left the NICU, I paid a quick visit to Dr. Gottier on the 18th floor and headed to get Kinsley. We then went to dinner with Zane and Christine before heading back up to the hospital. We have such wonderful friends and it was great getting to spend time with them! Once we arrived back at the hospital, Laura let Zach hold Sadie for a little while. Once again, she was peaceful and cozy while Zach was holding her. After we put her down she started to get fussy again. Our poor little girl just wants to be cuddled, and who can blame her!

Verses for the Day:
"As you do not know the path of the wind, or how the body is formed in the mother's womb, so you cannot understand the work of God, the maker of all things." -Ecclesiastes 1:5

Throughout this whole experience, I feel like I have learned a lot, but also that I have so much more to learn. The way the human body is designed to work is crazy. We have an amazing God who formed things in a way that none of us can truly explain or imagine. Although I have had many doctor's explain the heart to me and the way it is designed to function, not one can truly explain how it happens. That is part of the mystery of God. It is so cool to think that my sweet Sadie Grace lived inside of me and that she was formed by God. What is even crazier to think about is the fact that her body knows just what to do to function. Even though her heart has not formed according to God's original design, it is still trying its hardest. And her little body is still fighting. If we consciously tried to think to tell our hearts to pump blood, we would not be able to. But, because of God's incredible design our hearts know exactly what to do. I can not understand how this is possible. And just as I can not understand that I can not understand the works that God is doing through Sadie's life right now. I can see that in her 14 days on earth, she has already made a bigger impact than I believe I have in my 26 years on Earth. What a beautiful testimony she already has for the Lord. Through other people's words and stories, I can already see the impact she is having. She has also made a huge impact in my own life. I can honestly say that this has helped me become closer to God than I ever have been. And in spite of that, I still do not know His final plan. So, I must not try to understand. Rather, I must sit back and see the beautiful things He is doing through Sadie's life and be joyful for the changes in my life and in others.

Praises for the Day:
1. Sadie's blood and urine cultures are still coming back negative.
2. The doctor removed the tube from her throat.
3. Both Zach and I were able to hold her today.
4. Most of her numbers look great!

Prayer Requests for the Day:
1. Pray for her white blood cell count to decrease.
2. Pray for her platelets to increase.
3. Pray that we will get a nephrology or urology consult tomorrow.
4. Pray for sweet Sadie's hunger pains to subside.
5. Pray for wisdom for the doctor's and surgeons as they decide wether or not to proceed with surgery on Wednesday or to postpone it.

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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

Monday, March 24, 2014

March 24th: 14 days old

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