Lautz of Love: Fixer Upper

Monday, February 2, 2015

Fixer Upper

Sadie and Kinsley watching Frozen before Sadie's surgery.

As I am writing this post, I am listening to the song "Fixer Upper." I am sure most parents who are reading this know exactly what song I am talking about, and can sing every word. Even Kinsley, my two year old, can sing the last word of every line. The song is about fixing Kristoff up for Anna, until they realize Anna is engaged.. then she becomes a fixer upper too. At the end, they talk about how people do not really change but that true love is the only actual "Fixer Upper."

Disney partially got it right, but not completely. Their version of true love is far from the real stuff. Christ's love is the only thing that can truly fix us up. His selfless sacrifice on the cross for us. That love that gives us a passage to eternity with Him. It is that love that helps me get through hard days. Days where I do not know what is going to happen with Sadie. Days where surgeons cut into her. Days where doctors rush into a room. Days where I do not have the answers. Days where I know God is the only one with the answers.

Romans 8:37-39 No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

God has been fixing Sadie up and me through this long process. He has been using doctors and nurses to help fix her up along the way and He has been using His word and others to fix me. We both have a long road ahead of us, but we have the love of Christ and the love of so many people (including you) helping us along the way.

Relaxing after extubation!

Sadie is currently being "fixed up" again. Last night was a hard one as they could not get Sadie under control in the beginning. She is a fighter to the end and was showing that off last night. I think she must have the Rocky soundtrack in her head as she just keeps going and fighting. But, when she is intubated that is a bad thing. I know I talk about it a lot, but I am going to explain it now- just so you know what it means. Intubation occurs when they put an ET tube in a patient's trachea and the vent (machine attached to the ET tube) breathes for the patient. While the ET tube is in, the patient must be sedated so they do not try to pull it out (especially feisty children). As a result of the sedation, the patient is also very sleepy which tends to make it harder for them to breathe- and takes away their drive to breathe. Sadie is a patient the requires a lot of sedation- and last night, even though they maxed her our on sedatives, she was still fighting- so they had to paralyze her. As a parent, it is awful to see your child paralyzed. I could see that her heart rate was still elevated, so I knew she was still angry. But, if she was not paralyzed, she could have pulled out her ET tube and she would not have been strong enough to breathe on her own. And, if she pulled it out, she could cause a lot of damage to herself. So at the beginning of the evening last night, while everyone else was watching the Super Bowl, we were watching the Sadie Bowl- it was Sadie versus the nurses and doctors. She was in the lead in the beginning, but eventually they gained control. After finding the right balance of sedatives and paralytics, her heart rate and fever decreased- showing that she was finally calm and comfortable.

Sadie's PICC line is inserted under the sleeve.

This morning began with the search for a central line. Sadie lost two arterial lines and an IV yesterday, and with her long stay ahead of her a PICC line was necessary. More medical knowledge for you- a PICC is similar to an IV except the catheter is inserted in a large vein and then is threaded all the way to a vein that is right above her heart. They use PICC lines as they last much longer than IV's and they can draw blood from them, so less sticks for Sadie. Since we are going to be in the hospital for a while (anywhere from a week to a month), this will help a lot. After about an hour, Holly successfully inserted the PICC line and added a new peripheral IV.

After the PICC line was removed, they began the process of extubation. As Sadie's respiratory therapist puts it "it is like a nice dance trying to figure out the correct amount of sedation for the patient's, especially Sadie." They had to wake her up enough to breathe on her own, but also keep her comfortable enough that she would not rip it out before she was able to breathe on her own. Extubation was a success and she is now getting oxygen through a nasal cannula at a low rate. Hopefully, once she is fully awake (maybe before I am finished writing this) we will be able to take that off as well.

Sadie's beautiful foot cast that
Courtney put on to protect her IV

Moving forward. We will be spending the next few weeks in the hospital as Sadie is recovering from her chylothorax (leakage of the chyle into her chest cavity). We all have chyle in our body, but generally it is transported through our lymphatic system to our liver and to our fat tissue. With Sadie, somewhere within her lymphatic system there is a leakage. 90% of these leakages close on their own with time, but we must first get that time. They will start by switching her to a new formula that does not have a lot of fat in it, instead it has medium chain triglycerides. MCT's are fats that are easier to absorb and are absorbed directly into the liver, rather than having to travel through the lymphatic tissue. Hopefully, once we start feeding her this special formula that leak will have time to heal and heal on it's own. If that is the case, they will leave Sadie on the formula for a few months and then we will be able to try a normal diet again. If we start feeding her this formula and her chest tube continues to leak, she will have to go to strictly TPN (nutrition through IV). We should start feeding her soon and I will update you on that process as soon as I know more!

And just a side note (or maybe an end note- since this is the end not the side), I finished this before she woke up- I am getting faster! Hopefully the next time I write you, I will be able to put a current smiling picture of Sadie. For now, we will do a throwback (even though it is not Thursday).

No comments:

Post a Comment

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

Monday, February 2, 2015

Fixer Upper

No comments:

Post a Comment

Blog Archive