Lautz of Love: March 29th: 19 days old

Sunday, March 30, 2014

March 29th: 19 days old

Today was another good day for Miss Sadie Grace. The doctor's are still very pleased with her progress and are currently upping her feeds by 1 ml every 12 hours. We were slightly worried (well really worried at first) as we have noticed swelling in her right leg- it looks like a little marshmallow. However, we found out that the swelling is normal after they receive a catheter in their legs. Also, because of Turner's she is more likely to swell. They test three things to make sure their is not a big problem with this. First, they make sure she still has a pulse in her foot. Second, they make sure her leg is still pink. And last, they make sure it is still warm. She has passed all of those tests with flying colors, so we are very thankful for that.

We did have one scary moment for me as she started to pull out one of her lines in her leg. We looked down and noticed blood, so the nurse began searching. After we found the source, she calmly started to get a kit to clean it and close it back up. Well, I can handle a lot of things- but seeing my child bleeding and then being cleaned with alcohol is not one of them. I was doing okay watching at first, but had to sit down a few minutes into it as I started to feel nauseous. Luckily, I had a great friend there to help me through it!

We also had the privilege of making her room feel a little more like home. She has been moved to a crib, which seems huge for our little girl. But, we put a mobile on it and now she has a whole collection of friends watching over her. We also got to put her in clothes for the first time! The outfits are definitely big, but they said they like them that way because of the wires.

Kinsley also got to come up to the hospital again today, but she has not had the chance to meet Sadie yet, but we think it may be soon! After spending the morning at the hospital, we went to Seasons 52 for dinner- it was delicious. But, my favorite part was after dinner when Zach and I got to play with Kinsley outside for a few minutes. We played chase and she just laughed and laughed. It was so fun. She also made a friend with some little boy who started crying when he had to leave, we are in big trouble because this is not the first boy that has quickly become attached to her. Luckily, she does not have much interest in the boys yet- which makes her Daddy very happy!

Verse of the Day:
"The LORD your God is with you, the Mighty Warrior who saves. He will take great delight in you; in His love he will no longer rebuke you, but will rejoice over you with singing." -Zephaniah 3:17

This verse came to me from Mrs. Spann. She sent me a message talking about how she and the students have been praying fervently for Sadie. She said it was a beautiful sight to see her freshman down on their knees, lifting Sadie up to the Lord! It was just another reminder of how lucky I am to work at University Christian. UC is so much more than just a place to work, it is a family and home. We have been so blessed by the love, prayers, outreach and support from the faculty, staff, students and parents. And, it is not shocking in any way- because I know it all stems from the love of Christ within them!

Now, onto the verse how wonderful to know that the Lord is not only with us but that He is a mighty warrior. He is fighting for us! He takes great delight in us. He loves us and rejoices over us with singing! I know that He has been fighting for our daughter as she has overcome so many odds already. He has protected her through these times and will continue. Not only has He fought for her, but He has shown His face in so many ways. Through miracles big and small- He is showing His love and rejoicing in the ways that He can do it. I know that He loves to bring us joy- He is taking delight in each miracle, just as we are.

Praises for the Day:
1. Madison was released from the hospital. She is such a little fighter. The doctor's expected her to be in the hospital at least a week and it has only been 4 days.
2. Sadie was able to get dressed today!
3. They are still increasing Sadie's feeds.

Prayer Requests for the Day:
1. Pray for continued safety from infection.
2. Pray for the arterial bands to protect her from too much blood flow.
3. Pray for her to do well as we prepare for the next step of learning how to feed!

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

Sunday, March 30, 2014

March 29th: 19 days old

No comments:

Post a Comment

Blog Archive