Lautz of Love: March 22nd

Saturday, March 22, 2014

March 22nd - 12 days old

This morning started out rough for Sadie, as she lost an IV and her arterial line. They decided to leave the IV out but had to put the arterial line back in. My poor child has been stuck way too many times already. Fortunately, they were able to get it back in, so I am just praying she does not lose it again. They also had to put a line into her belly to pull air out as her latest X-ray showed too much air in there. As far as her numbers are concerned, almost all of her numbers look great- we just have two areas of concern. First, her white blood cell count went back up, this is not good news as we will not have surgery if this number is high. The second is her respiratory rate- it is still high. It was much better than yesterday, while I was there, but we would still like it to be much lower. Tonight was a great night, as we got the privilege of seeing Sadie bright eyed and awake again. It was so hard leaving her as I just wanted to spend every moment. I actually left the hospital in tears and had to use creative measures as I did not have tissues to blow my nose. But, we had to leave because we had to pick up Kinsley who was waaay past her bad time at that point. She fell asleep on the car ride home and was only half a wake as we got her ready for bed. She did have a wonderful night at a Christian concert with my parents and some of my family though!

Verses for the Day:

"See, children are a gift from the Lord. The children born to us are a special reward." Psalm 127:3

Over the last few weeks, we have received many blessings from friends and family. In the forms of prayers, words, cards, gifts and money, but none of them have been as great as the gift we have received from the Lord in our sweet Sadie. I was looking through the cards we have received today, and a quote on one jumped out at me. "You trace a soft finger across tiny, sleeping eyes and wonder 'God gave you to me?'" - Max Lucado. As I read that, tears sprang to my face as I realized just how blessed we are to have Sadie. I do not want any other child, because I know that she is our blessing from above, our gift. Although we are facing incredibly difficult and painful things, I am so happy that Sadie is mine. God knows what He is doing and He gave her to us. That is because He trusts us to take care of her, what an honor. I do not know how long I will get to keep her, and that fact terrifies me. I pray that she will outlive me by many years (or that we can just go to Heaven at the same time) but I do not know if that is His plan. I can only pray that it is!

As I said earlier, I left the hospital in tears tonight. I was under the attack of the enemy, he taunted me and tried to control me with fear and he did momentarily. I felt defeated like there was nothing I could do, praying only brought me to more tears and I began to get angry with God. I asked why? And then I stopped and remembered the words that I had read to Sadie earlier in the night. "Children are a gift from the Lord. The children born to us are a special reward." No matter what Satan throws at me, He can not take this gift away as she is already my special reward. The Lord has given her to me and she is mine. And I will do my best to take care of her, to love her, to teach her to love the Lord and to grow in His wisdom and truth. She and Kinsley are both my gifts and I love them dearly. I thank the Lord that I have them, I can see that I am so blessed already.

Praises for the Day:

1. We still see no growth in her blood and urine cultures.

2. All of her vital signs are looking good!

3. Her cardiologist demanded a consult with either urology or nephrology and made sure the neonatologist knew about it. ( We have not had it yet, but hopefully it will be tomorrow.)

4. She is still breathing well enough to breathe on her own without assistance.

5. We got more alert time with our sweet Sadie!

6. Kinsley seems to be doing much better, her nose is still slightly runny but I think the medicine is working!

Prayer Requests for the Day:

1. Pray for her white blood cell count to decrease.

2. Pray for continued good results from the blood and urine cultures.

3. Pray for her respiratory rate to continue to slow down and her lungs to not be overfilled with blood.

4. Pray for either urology or nephrology to come give us a consult!

5. Pray that she does not lose her arterial line or PICC line.

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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 22, 2014

March 22nd - 12 days old

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