Lautz of Love: June 2014

Wednesday, June 18, 2014

Three months old

Heading to Tampa

It has been a crazy few weeks to say the least with a lot of ups and downs. Through it all, God has remained faithful. First, I am blessed to say that two people who I love very much have both made it through successful surgeries! Last Wednesday, Emerie had her second heart surgery- and the surgeons said she rocked it! There have been a few bumpy days after the fact, but hopefully she will be allowed to go home tomorrow. Continue to pray for her family as there are some new unexpected complications. Now onto the second, my nephew Alex had "brain" surgery yesterday. I put the brain in quotations because I do not know all of the specific medical details. What I do know is that he did awesome! He is currently recovering and is enjoying popsicles and movies! The greatest part of all is that he has been so brave throughout the entire process. God works in very cool ways and worked out the timing of VBS perfectly for Alex. Initially, Alex's surgery was scheduled for last week- which means he would have missed VBS. Due to some scheduling conflicts, the surgery was moved and he got to attend VBS. Well, the entire theme was "I can count on God" and you better believe that Alex paid attention. Rather than being nervous before his surgery, he was ready to go- knowing that God would get him through! What an amazing young man he is already.

In the CVICU at All Children's.

Snug as a bug!

As for Sadie, we have had some new developments, but a lot of the same stuff. I think the craziest part occurred when we decided to go to Tampa for Kristin and Drew's wedding. We arrived Wednesday night and were up pretty late with Sadie, who was extremely fussy. Well we noticed she was warm, took her temp and saw she had a fever. I called my pediatrician who sent me to the ER. Before we even left, we were told that All Children's Hospital in St. Pete was the place to go- if we needed a doctor. Of course we thought we would never have to go- but alas at 4:30 in the morning, we were throwing things in a bag and making the trip. Forty five minutes after we left Zach's parents house we arrived at the hospital and were immediately taken back. After running some tests, we learned she had a UTI and parainfluenza. We were admitted and made it out of the hospital just in time for the wedding. It was definitely different being at a new hospital and really made me miss our "home" at Wolfsons.

Our first good family photo at Kristin and Drew's wedding!

Weighing Sadie, something we do every morning. And a free
bit of trivia --> a Newborn Pampers Diaper weighs .02 kg.

Well after our visit to the ER, we came back and had a renal ultrasound and an appointment with urology. Dr. Mercer looked at the results and determined we should do a small surgery for Sadie. I let her know it would probably not be approved, but we scheduled it anyways. Shortly after, we visited Dr. Lacey who said they could "get in line" haha.. so, we are postponing that surgery as well as the one to remove her hygroma. We are just praying that we will not have any more UTI's. One of the biggest problems with her getting the infection was that her body was working so hard to fight it that she stopped gaining weight. On top of that, Sadie started having reflux issues. We went through a three week period of no weight gain, that almost put us back in the hospital. Dr. Lacey changed her Zantac dosage and had us starting adding rice cereal to her breastmilk, along with the formula and I am happy to report that she gained 3 ounces in a week! We were so very excited and Dr. Lacey said we did not have to admit her to the hospital! Praise the Lord!!!! As far as her heart is concerned, they say it is growing great and at this point we may be looking at her having a full four chamber heart!!! Of course, we are still just waiting on her to grow at this point.

Showing off one of her new tricks...
How old is Kinsley?

Kinsley playing in "her" cabinet!

Overall, I must say it has been so much fun being able to stay home with the girls. Our lives are hectic as we go to a lot of doctor's appointments, but it is also so fun! Kinsley is adding more words to her vocabulary each day. And her personality is just so cute. She loves her sister, loves Frozen, loves being outside and loves to play!! She has also started singing... well just a little bit. She sings the word "door" in the song "Love is an Open Door" and the "oooooo" at the end of "Achy Breaky Heart." Sadie is definitely a momma's girl at this point. There are a lot of times where she will only be happy with me- which is wonderful but can be stressful as I want her to be okay with other people as well!

We have also been so blessed with help from so many people that I can not even begin to thank. But thank you everyone from our life group who has brought us dinner or just come to hang out- Justin, Amanda, Zane, Christine, Jarrod, Megan, Jamie, Sam, Dan, Nicole, Courtney, Lee, Erin, Shaun and Shea. Also thank you so much to our families who have helped us infinitely through all of this!!! Cassy and Aunt Linda have helped with watching Kinsley and have brought her such joy. And our parents have been beyond amazing! We love you all!!!!

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, June 18, 2014

Three months old

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