Lautz of Love: March 23rd: 13 days old

Sunday, March 23, 2014

March 23rd: 13 days old

Sunday’s are always wonderful days. We started off with church then got to visit Sadie at the hospital for a little bit. When we arrived, they were in the process of putting a new IV in, so they could give her more blood. This time, they started with the ultrasound machine so it only took one stick. Needless to say, she still did not like that one stick, but honestly who can blame her! After they finished she was obviously upset, but we gave her some “sweeties” and she calmed down after a little bit. Then she was calm and alert, my mom, dad and Zach were all there and all got to see her awake and happy it was wonderful! When Zach and I went back later, she was sleeping peacefully and I got to hold her again! What a wonderful thing =) Treasure those moments moms, because they are so wonderful!

In regards to her vital signs, everything looked pretty good. Her white blood cell count went down again, but we need it to go down even more. The only test that gave us problems was her hematocrit, and to combat that we just gave her more blood.

Overall, I think we are looking good so let’s just keep praying for surgery on Wednesday!

Verses for the Day:

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1: 2-3

This has been the trial of a life time for me, and I know it is for Sadie and so many others who love her. It is funny how situations like this can open your eyes. I can look back on things that I thought were so important, or so hard and see now that they do not compare in any way. And, when I look back on those other trials, I can also see how God brought me through them and how they shaped me to be the person I am today. It is in looking back, that I can see what truth this verse shares. Now, as I am in the midst of this trial, I must trust God and realize that He will bring us through this. But, as I read these verses and break them down , it is hard for me to apply each part. If I am being honest, this is where I would just like to pick parts of the Bible to apply to my life. Let's take "consider it pure joy" for instance. As I live through this trial, it is hard for me to "consider it pure joy." In fact, it is not joyful when I see Sadie hooked up to machines, or hear her cry as she is being pricked with a needle (again and again.) It is not joyful when I have to leave the hospital and leave her lying in her isolette. So, how can I "consider it pure joy"? This is where I must lean on Christ. I must realize that He is in control. This is where I also must realize that I am a human, and I am not perfect. I do have joyful moments, such as when I got to hold her tonight. Or, when I get to see her awake, calm and alert. These are moments I treasure more than you could imagine. There are also joyful moments when I get to see parents walking in with car seats. I am sure most people do not get excited to see someone walk into a room with a car seat. But, if you are in the NICU and see someone walk in with a car seat, you know that means they are taking their baby home! So, it is easy for me to find moments of joy without finishing the verses. But, if I finish the verses I realize their is a promise from God to me in there. When we face trials, God uses them to develop us to make us mature and complete, what a wonderful thing. I know I am growing closer to Him each day! And I know this too, because I feel more and more under attack each day. Satan is trying to weasel his way in and grab me, but I know who my Savior is, I know who my Creator is and He is by my side. So, He gives me the strength to persevere. No matter what you face or I face, we must remember he is with us and is constantly molding us and shaping us. What a miracle!

Praises for the Day:

1. Sadie's white blood cell count has dropped from a 31 to a 24.

2. They have been able to move her blood gas tests to every six hours instead of four (which means she looks good and they are taking less blood from her.)

3. Cardiology stopped by this morning and was pleased with almost everything!

Prayer Requests for the Day:

1. Sadie's hematocrit level was off, so they had to give her blood today- pray that it will correct itself tomorrow.

2. Pray that her white blood cell count continues to drop, we want to get in the low teens!

3. Pray that her numbers and vitals continue to be good so that we can have surgery on Wednesday.

Kinsley with her NCAA March Madness Bracket. I am pretty sure hers is better than everyone elses =)

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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

Sunday, March 23, 2014

March 23rd: 13 days old

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