Lautz of Love: When I Fail

Wednesday, February 4, 2015

When I Fail

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

I like to write when I feel encouraged... I like to write when there is good news to share... I like to write when I feel strong... and I feel like I should feel this way now, but for some reason I do not. Maybe it is just the roller coaster of emotions. Maybe it is because I feel like I do not see an end in sight. Maybe it is because I have not been able to spend as much time with Sadie as I would like going back to work...

But, I am experiencing joy IN this moment as I struggle to type. I am struggling because Kinsley is sitting on my lap trying to type at the same time. Her laughter is infectious.. and now she is gone. She has just run off to get medicine from grandma. It is nice being home, but I think I am just exhausted.

Through all of this, I have received more compliments than I can imagine. People who are amazed at my strength, but I do not feel strong through all of this at all times. I know that when I do have strength, it is only because God has given it to me. Before we experienced this, I remember reading the blog of another mother- it was a mother whose baby had been born with the same thing as Sadie. I remember being excited and nervous to see a new blog post- but finding such hope in her strength and wondering where she got it from... thinking I could not have the strength and now I know that I could not have the strength alone. God gives you the strength. He gives it through His word. When I look, He gives me the words I need. When I listen, He gives me the strength through songs and stories. He also gives me the strength through others. He gives it through the people He has placed in my life. My amazing husband who has stayed strong by my side and is always there to support me- in whatever way I need. Who has done his best to provide a normal life for Kinsley. Who has spent many nights alone at home as I have been at the hospital with Sadie. Through my sweet Kinsley who brings me unmeasurable joy. Joy through her laughter at the silliest things. Joy through her exclamations of wonder- if you have never heard her say "ohhhhh" in excitement, you are missing out. Joy through the silly things she does and says. Joy through her big hugs and kisses. Joy through her love! For my parents and Zach's parents who have supported us through all of this. They are constantly helping us balance the craziness life has thrown at us. They have also given us amazing examples of how to be parents and spouses. Through our family, church, work and friends- we have so many amazing people who call, text and show up just when we need them. I know that God has put us in this place, in this situation for a purpose. He has such big plans for Sadie and I can not wait to see what they are.

On to the update...

The last few days have had their ups and downs. Monday was pretty good as Sadie was in a great mood and seemed to be feeling well. She was eating and doing very good. Monday night was not great, but not bad by any means. Tuesday, Zach's parents arrived and I was so excited for them to have a great day Sadie sitting. That did not happen, instead Sadie had a rough day. The chest tube they inserted was inserted too far and had to be un-sutured and re-sutured twice. This is a painful process, so she was given sedatives. Weaning her off of the medicine has been difficult and giving it back to her makes it even harder. In addition, each time they took the tape off of her skin, it was tearing at her skin more and more. And to top things off, each time they pulled the tube- it just uncoiled so they did not get it to where they needed it to be. Therefore, they had to move it again today. Fortunately, they were able to get it to the right position. So now we recover.

The recovery from this process is going to be a long and slow one. We have been told it can take anywhere from a week to a month. So, we are now just waiting. The problem is when you are waiting in a hospital, it makes it harder. Harder for Sadie as she is stuck in the same bed for 24 hours at a time. This makes it harder for her to be active and break up the fluid in her chest. It is also harder as she is constantly being checked on. This is obviously very important and helpful, but it is hard as she does not like being messed with (who can honestly blame her though). Harder for us as we are stuck living in two different places. Stuck trying to balance work and taking care of our children. Stuck waiting. But, waiting is what we will do. We will wait for her body to stop producing chyle. Once the chyle has stopped draining from her chest tube, they will clamp the tube and X-ray her in a few hours to see if their is a build up. If there is, they will unclamp and we will wait some more. If there is not, we will wait a little longer to ensure it isn't going to come back and then hopefully be able to go home.

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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

Wednesday, February 4, 2015

When I Fail

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