Lautz of Love: March 28th- 18 days old

Saturday, March 29, 2014

March 28th- 18 days old

Today was my official due date for our sweet Sadie and she is already 18 days old. However, it feels like we have had her forever. These past two and a half weeks are an enigma to me. Part of me feels like they have flown by, while the other part feels like they have dragged on. Regardless of how the time has been, I do know one thing - they have been wonderful! I love every minute I get to spend with my sweet girl.

We had big improvements again today, as she had her catheter and chest tube removed! She was also upped to 2 ml of breast milk per hour. Which will be about an ounce and a half over the course of 24 hours. I am thankful I am not on that eating plan! When one of our cardiologists walked in today, I proudly let him know that she had been upped to 2 mls per hour and he laughed and said he was pretty sure she swallowed more spit than that. He is a fan of feeding them faster, but they all compromise based on what they believe as a group is best for Sadie. As a whole, they said she is looking great. She is still slightly tachypneic (her breathing is fast) and a few of her levels are not quite where we want them, but they say she is doing amazing considering she just had open heart surgery.

Tomorrow, will be a big day as they move her to a crib and we get to put her in clothes! We went shopping for her for the first time, it was great! I can not wait to post pictures of her in her outfits. They have to be a special kind that they can easily remove, but Krissie prepared us for that so we know exactly what to get.

Verse of the Day:
"Ah Lord God! It is you who made the heavens and the earth by your great power and by your outstretched arm! Nothing is too hard for you." Jeremiah 32:17

I have found throughout my whole life that when I face a big problem, I usually try to solve it on my own. I think "I can handle this" and begin doing every "earthly" thing I know how to do to solve the problem. Then, when I have exhausted all "earthly" means, I get wise and remember to ask God. Why is it that I do things so backwards? Why would I not start with the creator of the universe? He made me, He made everything and He knows everything. Obviously, He knows the solution. For example, sometime last year I lost my retainer (yes, I still wear a retainer every night- if not, my teeth would be crooked) and searched everywhere high and low. I distinctively remember that it was late and I was exhausted. So, after spending over an hour searching, I decided to skip my devotion and just go to bed. I knew it was wrong, but I was so tired. Well, as soon as I laid down, I felt this nagging on my heart that I should do my devotion. Obviously, the Holy Spirit was convicting me. So, after laying there for five minutes I gave in and decided to do my devotion. Well I got up went to my drawer and pulled out my bible and you will never believe what I found laying on top- my retainer. It was such a funny little reminder that I needed to turn to Him!

Now, we are facing different circumstances and we have been able to see God do miracles through supernatural means and through medicine. I am so thankful for everything He is doing! We are thankful for the way her body has responded to the treatments in ways that shock even the doctors. And, we are thankful for all of the skills given to everyone who is working on her. I am so thankful for each and every person who has has worked on Sadie over the past few weeks and for the doctors that have been following me throughout my entire pregnancy. It is so amazing to know that God formed each and everyone of them and gave them the will and desire to do their jobs. He is using them in mighty ways and some of them do not even know it. I am thankful for the paths they have taken to be where they are today. I am also thankful for the paths we have been on that have kept us here. It is wonderful to see how God has orchestrated every part of our paths and continues to do so! I am so thankful that I serve a God who nothing is too hard for!

Praises for the Day:
1. Sadie had her chest tube and catheter removed!
2. She was calm and alert for a lot of the day.
3. She is exceeding their expectations for recovery.

Prayer Requests for the Day:
1. Continued protection for Sadie from infection. As she is post surgery, it is so important that she does not get any type of infections, bacteria or sicknesses as they could cause severe problems.
2. Pray that her stomach will tolerate the milk so that we can continue to increase the amount we give to her.
3. Continued wisdom for everyone involved in making her plans for each day!

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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

Saturday, March 29, 2014

March 28th- 18 days old

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