Lautz of Love: September 2014

Tuesday, September 23, 2014

And so it begins again...

Today I received the call that would set up the first step towards Sadie's next heart surgery. Of course I have known all along that the day was coming again, but this makes it feel even more real. The anticipation and excitement remind me of the moments before cheerleading competitions in high school. I absolutely loved competing, but the moments before were always the worst. As I stood back behind the curtain waiting for our team to be called, I was incredibly nervous. My heart would beat fast, my hands would I shake and I would always have to pee. Of course, I know it was adrenaline and it was part of what would fuel me out on the floor, but it was a terrifying feeling. Once I was on the floor and the music started, my body knew what to do and I was once again at ease and having fun... but I just had to make it there. Well, that is the feeling I am experiencing now. I know that we must have surgeries to help Sadie be healthy, but I am terrified of the process that get's us there. I know, of course, that it is in God's hands and He has a plan- but I just wish I could fast forward through the whole surgery part. So, on to the update --

Next Friday, October 3rd, Sadie will have her second heart cath and her first TEE. They will use both of these tests to examine and measure her heart so that we can make the best possible decision for her second open heart surgery. They will need to put her under anesthesia to do the procedure, so that is scary, but the heart cath itself should be relatively easy. At this point, the plan is to do a two ventricle repair. Dr. Lacey and the other cardiologists all belive that her left ventricle and surrounding valves have grown enough so that she can have a "normal" functioning heart. Although it is a major surgery, it would mean we would not need to do the Norwood, Bi-directional Glenn and Fontan. After the cath, Sadie's cardiologists and surgeons will meet to discuss which direction they believe will be best for her, pray for wisdom in this decision!!!!

For now, I must give praises for how well Sadie is doing. It has been amazing seeing her grow and blossom. She loves kisses, tickles and her family. When Kinsley comes near her, her little face lights up in excitement. Our faces cringe in fear as we get nervous that she may trample her, but Kinsley is usually very sweet. She gives her hugs, kisses and even likes to "hold" her. Her hygroma has shrunk significantly, and I believe that is because of prayer and the fact that she is finally healthy. It has been wonderful to see her be happy for extended periods of time. For a while there, she was constantly in pain and it was so hard to see. As a parent. you feel hopeless seeing your child suffer and knowing there is nothing you can do to help them. I often think that must be how God feels when He sees us stray from His plan for our lives.

As far as feeding is concerned, Sadie still will not eat enough by mouth to sustain herself. Every Saturday, when we change her NG tube, we let her keep the tube out for two feeds to see if she will possibly decide to eat enough, but at this point she is only eating approximately half of what she needs. It is so frustrating as I just wish that I could convince her to eat, but unfortunately she does not understand. Once again, I know God must feel that frustration when we stray, yet we do not listen either. We have tried feeding her sweet potatoes, and she has done okay with it. The first time I tried giving her the spoon, she just batted it away and cried. So, I dipped her pacifier in the sweet potatoes and let her suck it off. Then after multiple times, I was able to switch it to the spoon. I am not sure how much ended up in her belly and how much ended up everywhere else, but it is a start.

From a urological standpoint, we have had multiple appointments and Dr. Baraza is confident that we are doing good for the time being. We will have to have major reconstruction surgery, but we will wait until approximately six weeks after her heart surgery. The new medication she is on is working at this point to keep away infections so we are thankful and still praying that she will not become immune to it.

Verses:

Ephesians 4:17-24

17 With the Lord’s authority I say this: Live no longer as the Gentiles do, for they are hopelessly confused. 18 Their minds are full of darkness; they wander far from the life God gives because they have closed their minds and hardened their hearts against him. 19 They have no sense of shame. They live for lustful pleasure and eagerly practice every kind of impurity.

20 But that isn’t what you learned about Christ. 21 Since you have heard about Jesus and have learned the truth that comes from him, 22 throw off your old sinful nature and your former way of life, which is corrupted by lust and deception. 23 Instead, let the Spirit renew your thoughts and attitudes. 24 Put on your new nature, created to be like God—truly righteous and holy.

These verses remind me that I should not stray, I should trust and follow His plan for my life. I am no longer in the dark, I am a child of His light and as so, I should act like it! He knows what is best for me and therefore I must do my best to trust Him and follow His plans for my life. Please help me accomplish this by letting me know if my sinful nature is showing.

Prayer Requests:

1. Wisdom for Sadie's doctors as they make decisions in the near future

2. Continued protection from infection

3. Wisdom as we decide what path to take with her hygroma

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, September 23, 2014

And so it begins again...

Blog Archive