Lautz of Love: April 17th- Home Sweet Home

Thursday, April 17, 2014

April 17th- Home Sweet Home

Sorry I have been MIA. It has been a crazy week... to start with, we moved. Last Tuesday, we toured a new place, put in an application on Wednesday, were approved on Thursday and moved in on Saturday. CRAZY! Second....

We finally got to bring Sadie home! And we have made it through a full day and night. It is beyond wonderful to have our sweet Sadie home with us.. and shockingly it has not been as scary as I would have imagined. We are definitely tired, but it is worth every lost minute of sleep!

Now, we begin the process of settling into our new life as a family. I kept telling everyone that I did not feel like I had two kids yet because I never really had them at the same time. Well, now I know that feeling. When we left the hospital, we did not have Kinsley with us. She was with my aunts, cousins and mom. Soon after they dropped her off, we showed her Sadie and then Zach fed Kinsley while I fed Sadie. After I finished feeding Sadie, I went into the kitchen and Zach asked me to feed Kins for a minute. So, there I was holding Sadie and feeding Kinsley. I also felt like the mother of two when Kinsley ran in and tried to pat Sadie. I am so thankful for the challenges that await us though! I am also ready for the changes.

From now on, my posts will not focus on white blood cell counts, platelets, ultrasounds or x-rays. We have new things to focus on.. like counting the number of poos and pees. We also have to check her pulse ox levels twice a day and weight once a day. In addition, we have to give her all of her meds. She is actually not on that many, but it is a lot of work keeping track of them. I did feel very accomplished after we made it through our first set. In addition, we are really focusing on her feeding. Her current goal is 45 ml every three hours. Whatever she does not take by mouth, has to go in the tube. Well.. I am happy to report that since we have left the hospital we have had seven feeds and I have only had to give her the milk through the tube two times! She has taken the full amount by mouth every other time!! Praise the Lord! In addition, she has not had any trouble latching!

I also have to make sure I keep all of her appointments straight.. we have the following people to see for Sadie: Pediatrician (Dr. Mary), Cardiologist (Dr. Lacey), Hematology, Urology, Nephrology, Speech Therapy and ENT! Tomorrow is our first appointment with Dr. Mary so we are very excited for that!

Well I am exhausted, so that is all for now!

Verse of the Day:
The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song. Psalm 28:7

It has been amazing to see how well Sadie has done through everything she has faced. As I have had the opportunity to spend time with her outside of the hospital, I have seen even more of her sweet personality. She spent so much time awake and happy today and it was beautiful to see. Her big eyes were just curiously staring at me and the things around me and she was so content! It is so wonderful to see her happy and just able to be a baby. I do give thanks to the Lord for that and to the incredible doctors, nurses and everyone else involved in her current status. I know that the Lord had a plan with her and that He was Sadie's strength when she needed it- that he shielded her from danger! I know that every single person who took care of her at Wolfson's was part of God's plan for Sadie too and I am so thankful for them all! I also know that not only was he Sadie's strength and shield but He was that for me and so many other people too. The Lord has given me an incredible sense of peace and strength throughout this entire situation. That is not to say that I have not had moments of weakness, but to say that He has given me the strength to make it through those moments of weakness! My heart is leaping for joy-- my God is good!!!!

Praises for the Day:
1. We are home!!!!!
2. Sadie has been doing an amazing job eating.
3. Sadie is up to 5 pounds, 10.5 ounces

Prayer Requests for the Day:
1. Supernatural rest for Zach and I as we are already exhausted.
2. Pray for Sadie's left ventricle and aorta to grow so that she can have a full functioning heart.
3. Wisdom for Zach and I as we take care of Sadie.
4. Pray for peace and comfort for Kinsley as she adjusts to being a big sister.

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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

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Thursday, April 17, 2014

April 17th- Home Sweet Home

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