Lautz of Love: March 21st: 11 days old

Friday, March 21, 2014

March 21st: 11 days old

Today was another good day for Sadie. In fact, it was probably my favorite day as she was alert and happy for a good 45 minutes with me. It was so wonderful to see her sweet eyes open and just be able to talk to her. We also had a photo shoot, so get ready for cuteness overload!

Most of her reports are also looking great! Her white blood cell count is still high (showing that she is fighting some sort of infection) but it has dropped, so that is a good sign. She is also still breathing fast, due to the dampness of her lungs. When I asked cardiology about this, they said that as long as her blood oxygen levels and platelet levels stay okay, we will not need to intubate her early, but if they start to have bad levels, we will. I pray that we do not have to intubate her early, but also ask that the doctors have wisdom to do it, if it becomes necessary. Kinsley is also slightly sick, so keep her in your prayers. She is not acting sick, which makes me very happy, but does have a green, runny nose and a cough.

Verse for the Day:
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. You saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 139: 13-16

Tonight, I read Psalm 139: 1-16 to Sadie, and she was actually awake with slightly open eyes for it. I absolutely love these verses. They bring peace and joy as I read them. There are three things that I explained to Sadie from these verses tonight.

1. Verses 1- 6 discuss the intimacy we have with God. I love that it opens by talking about how well he knows us. It says "You have searched me Oh Lord, and know me." At times, this can be scary, because he knows our every thought and sometimes we do not want Him to know them. But, this is also comforting. Because He knows us so well, He knows our wants, desires and needs. He knows what is best for us and it is something that I keep seeing and keep coming back to. He knows me inside and out, and He also knows Sadie inside and out- what a wonderful thing.

2. Verses 7-12 discuss God's omnipresent nature. "Where can I go from your Spirit? Where can I flee from your presence?" I do not want to be away from Him at all, and even if I wanted to.. I could not because He is everywhere. That is so reassuring because I know that I need Him now more than ever, and I know that Sadie needs Him too! What a joy to know that He is constantly with us and constantly watching over us. Not only does it talk about the fact that He is there, but it also talks about how He guides us. I know that I need His guidance now more than ever. What a wonderful thing to know He offers it, I only need to accept it.

3. Verses 13-18 discuss our creation. What a joy to know that He is our creator. I always make it a point to pray over Sadie before I leave her each time. And, I always thank Him that He created her perfectly. When you study the human body it is crazy to see all of the intricacies that are within us. To see, just how complex we are and how our body must work to function properly. I do not know much, but I am learning a lot about this as I learn more about Sadie and her condition. Although her body is made differently, the Lord still designed it. This was not a mistake, accident or coincidence- this was His design! And I love every bit of it- I would not trade my sweet Sadie for any other baby in the world. When we first found out about Sadie's condition, I immediately adopted a song for her, All of Me by Matt Hammet. If you have never listened to this song, it is amazing. It has always been one that pulled on my heart strings but hearing it now, it takes on a whole new ming. Matt Hammitt is the lead singer of Sanctus Real and wrote this song for his own little boy, Bowen. His son, Bowen, was diagnosed with Hypoplastic Left Heart Syndrome before he was born (the same thing Sadie is diagnosed with.) When Matt heard about his son's disorder he wrote the song and really opened up his heart. He talks about how he was scared to love at first, because he knew it could lead to pain. But, he realized he needed to give all of his love to his son, even though he knew it may hurt. Well, he did just that and his son is currently a healthy three year old boy. He still needs one more surgery but is doing great for now (you can read more about him at BowensHeart.com.) Before I knew about Sadie's condition, before I even knew I would have a child, this song pulled on my heart strings. After learning of Sadie's condition, it affected me even more. I can not tell you how many times I cried to this song- but I also learned from it and realized that God did have a plan and did create her this way on purpose. I knew I had to give her all of me, and I did just that! She has all of me and has the love of so many. I have seen countless miracles already and know more will come as a result of this. He is already using her in more ways than I can imagine- what a wonderful thing! He ordained her days. Obviously, He knows she is a strong little girl, because He will never give us more than we can handle (I will share that with her another day though).

Praises for the Day:
1. Sadie's white blood cell count has decreased (it was too high before)
2. The new blood and urine cultures have no growth at this point.
3. Her renal ultrasound looked better than the last one (we have not received specifics on this yet.)
4. Her blood oxygen, platelet levels and CRP levels all look good.
5. She seemed much more comfortable and a lot less irritable today!

Prayer Requests for the Day:
1. Pray for her white blood cell count to continue to decrease (it is at 23 and we need it down to at least 15.)
2. She still has a very high respiratory rate due to the dampness in her lungs. Pray for the medications to work and for her to keep her numbers good so that she does not have to be intubated early.
3. Continue to pray that her blood and urine cultures have no growth.
4. She has either a urology or nephrology consult tomorrow, pray for wisdom for whichever speciality we see.

Have a great night!

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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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Friday, March 21, 2014

March 21st: 11 days old

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