Lautz of Love: April 28th- 7 weeks old!

Monday, April 28, 2014

April 28th- 7 weeks old!

Feeding, feeding, feeding.. that is our focus now. Before we had Sadie, I would have never been able to convert millileters to ounces but now I am a pro. And now, it is the dreaded ml that I face every three hours. To you, forty five ml may sound ambigious, you may have no clue if that is a large or small number. Well from my point of view, it is the smallest and the biggest. It is small in comparison to any grown person, an ounce and a half of liquid. But, for Sadie it is a very large number. And up until today, it was our goal to reach that number every three hours. We have been doing pretty good reaching it, but it is always scary as it approaches time for me to feed her. I am always plagued with worry.. Is she going to latch or be crazy? Is she going to allow me to pace her or suck in extra air? Is she going to stay awake long enough to finish her feed or fall asleep half way through? And the worst worry of all.. is she going to keep this down or throw it all up? Each time we eat, I ask God to provide her with the coordination, endurance, strength, desire and tolerance she needs for her food. Over the last few days, she has been doing great, but her needs are always increasing.

According to the scale I weigh her on every morning, she has been slowly gaining weight. So, when I headed to the pediatrician's office this morning, my hopes were high! We had a great weekend, she was eating well, had stopped throwing up most of her food and had gained approximately two ounces. Well, according to their scale, she had lost two ounces so they said we needed to up her feeds. I immediately felt defeated, it was hard enough reaching the 45 ml, but upping to 60 ml or eating every two hours just seemed impossible. But, I know that they just want what is best for Sadie. After her pediatrician appointment, we headed to the cardiologist. They did an echo and an EKG and Dr. Lacey said both looked beautiful. In fact, she said that her left ventricle has been steadily growing compared to both her fetal echo and newborn echo! That is great news. Then came the dreaded food talk. I had recently stopped fortifying the breast milk with formula because I thought that was what was making her sick. Well, Dr. Lacey said we needed the extra calories so we should try to fortify with less formula to see if she could tolerate it. She told me if she could not, we would try other things. Well, so far, she has only spit up a tiny bit, so we are doing good. Pray things continue to trend in that direction as we need her to get bigger and stronger! Just look at the size of her "wubbanub" (the giraffe pacifier) compared to her!

In other news, we have seen the hematologist and they will be ordering an ultrasound of her leg for sometime in the middle of May. IF her blood clot is gone, we will be able to stop the Lovenox injections! Pray for that to happen as we (well mainly Zachary) hate having to give her shots. We have also seen speech therapy once and that appointment went great. Of course, she eats great when they are around! But, we will be seeing them twice a week for some time, so hopefully that will continue to go well. I have also scheduled appointments with urology, nephrology, ENT, physical therapy and I am waiting to hear back from genetics! It has been a crazy ride already, but we are enjoying each day.

Finally, I have not said much about Sadie and Kinsley. Well, Kinsley is an amazing big sister already. She loves Sadie! If we ask where she is, she almost always knows and will lead us to her. She is also doing a great job being gentle with her. And here is one cute story. The other day, I was coming home from an appointment and had both girls by myself. I parked the car and got Kinsley out before I grabbed Sadie. Well as I pulled Kins out of the car, she looked and saw that Sadie was still in the car. I shut the car door to go around to get Sadie and Kinsley immediately started crying! She thought we were leaving her baby behind! I rushed to the other side and grabbed Sadie and she was all better. Look at that sisterly love already! I am so proud!

Verse of the Day:
"When my heart is overwhelmed, lead me to the Rock that is higher than I." Psalm 61:2

Everyone said over and over again that feeding would be the hard part. I listened and believed, but did not realize the extent to which this was true. First of all, I knew it would be hard but figured it would be solved while we were in the hospital. I thought, we are going home that means we have it all under control.. boy was I wrong! Feeding is the constant struggle that I face. I remember the first time Sadie was allowed to eat from a bottle. The speech therapist came in the room and sat down ready to feed her. I was so jealous, I wanted to be able to feed her. Well now, I enjoy feeding her but often times I am terrified. I am truly overwhelmed by her need for nutrition. I hate that at times, I can not help her get it. I am terrified that we may have to put the tube back in if she can not eat enough. Yet, I know that it is all for her good. I know the each doctor who is giving me instructions loves Sadie and wants what is best for her. So, I must not be overwhelmed. The Lord put each of them in our lives for a reason, so I must try that they are making the right decisions and I must lean on the fact that the Lord will not give me more than I can handle with Him! He is my Rock, He is higher than I am. So, when I am discouraged or fearful, I just think of how lucky I am that He entrusted me with sweet Sadie Grace. So, I will lean on the Lord, my God and trust in Him in spite of my fears!

Praises for the Day:
1. Emerie's heart has grown!!!!! Sweet Emerie, Sadie's best friend and the other little girl with the same heart condition as Sadie, had her cath done last week and the results were amazing. Her heart has grown so much that she should be able to have a two ventricle heart!
2. Sadie has been able to keep her food down.
3. Sadie's echo and EKG looked great!

Prayer Requests for the Day:

1. Pray that her blood clot will be gone by the time we do her ultrasound.
2. Pray for her cystic hygroma to dissolve on it's own! It has been growing slightly and we are not sure why. (We go to the ENT on Thursday, so hopefully we will be able to get some answers)
3. Pray for her to have the coordination, endurance, strength, desire and tolerance she needs when eating!
4. Pray for her to gain weight (not too fast though)!

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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

Monday, April 28, 2014

April 28th- 7 weeks old!

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