Lautz of Love: April 9th- Almost one month old

Wednesday, April 9, 2014

April 9th- Almost one month old

The last few days have been a roller coaster ride..

We started out at the gates, excited for what lay in store Monday morning. We had a great weekend and were ready to up her feeds. All of our doctors agreed that things looked great, so they upped her feeds and after some convincing, Dr. Shillingford even said she could remove her NG tube! Sadie was obviously listening and promptly removed it herself. She is just so helpful! Monday continued to be a string of ups, as she ate great every time I fed her. Our biggest up was that we were going to be able to go home in the next day or two and hopefully it would be without her NG tube.

Getting ready for her nuclear medicine study

Tuesday is when things started going down.... I arrived at the hospital and drove around for 30 minutes looking for parking. I knew I was going to miss rounds because of this and was so frustrated. Luckily, I ran into Dr. Shillingford in the stairwell and he gave me a short update. I already knew that she had not eaten that well throughout the night, so he said we would need her to improve or the tube was going back in. During the day, she ate great for me. So, we planned for me to stay the night to see if she just liked eating from me. Well, that night I got my first taste of Sadie not wanting to eat. She was so tired and frustrated that she only ate half of what she normally eats.

Visiting with Krissie!

Today, we had our ups, our downs and some flips. We started with being told she would definitely have her NG tube in and that we would not be going home until Monday. I of course was okay with this because if they are not comfortable sending her home, there is no way I am comfortable with it. Well, later they re-evaluated and determined we would try ad lib feeding (feeding her any time she was hungry) to see if that would work better. I thought she was doing great, but apparently the doctor's disagreed because we had to put the tube back in. And, when I say "we" I mean "me." I put the tube in! It was actually not as horrible as I imagined but it still something I would rather not have to do. Today, I also got to go with her for a nuclear medicine study of her kidneys. This will tell us how bad her hydronephrosis actually is (We are still awaiting results at this point.) After that, Krissie came up to visit! And I got to spend time with my usual visitors too, Fred and Brittany! Tonight, Zach gave Sadie her Lovenox shot for the first time and did great. It looks like we are both growing up very quickly!

Verse of the Day:

"When times are good, be happy; but when times are bad, consider this: God has made the one as well as the other. Therefore, no one can discover anything about their future." Ecclesiastes 7:14

On this roller coaster ride of life we are currently on, it is crazy how many "good" times and "bad" times we have. One minute, Sadie is thriving and amazing the doctors and everyone around her- she is a living example of a miracle! The next, we are facing a new setback.. a lost line, a new discovery, the regrowth of her hygroma, an infection.. the list could go on. But, just because times seem "bad" does not mean that I should give up, pout or doubt God. Rather, I must realize He is in control. I do not get to see the whole story yet. One day, I will look back and see it.. But, I can tell you this. This journey we have been on has been the hardest journey of my life, but it has brought so much good already. We have seen God's grace in new and unfathomable ways. We have grown closer to God and learned to truly depend on Him. We have realized just how lucky we are for each minute we have with each other and our families. We have been able to share in others burdens. We have seen God's love poured out through countless individuals. We have been given the amazing gift of Sadie Grace!!!! The list could go on and on.. and that is what we must keep looking at. That is what we must constantly see and remember!

Her leg all nice and wrapped up \while they are working on her PICC line

Praises:

1. Sadie's vital signs have continued to remain stable

2. Sadie has been transferred from the cardiovascular surgical team to the cardiologists (meaning she is completely recovered from her surgery)

3. We are going home sometime soon!!!

Prayer Requests:

1. Pray for Sadie to continue to eat and to gain weight. She has lost some and is down to 5 pounds, 3 ounces.

2. Pray for the results of her nuclear medicine study.

3. Pray for wisdom for the doctors as they continue to make plans.

4. Pray for Sadie's hygroma to resolve.

5. Pray for the occlusion in her PICC line to clear or that they take it out!

Zach feeding Sadie

This puts in to perspective just how little our Peanut is!

Kinsley at lunch.. enjoying pickles and oranges.. She did not enjoy the orange zest though

Cuddling with her friends!

Cuddling with Brittany!

Kinsley helping walk Brittany's "baby" at the heart walk

Look at those eyes!

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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

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