Lautz of Love: March 19th: 9 Days Old!

Wednesday, March 19, 2014

March 19th: 9 Days Old!

Today was a great day for my sweet Sadie! I planned on going to the hospital for two hours and then leaving to take Kinsley on a play date, but just could not convince myself to leave. When I first arrived, I got my updates from one of my favorite nurses. Then, I watched an ultrasound of her brain (which we are still waiting on results for) and then had the fun task of calming her down afterwards. She was calm for the first part, but then when they started to do the back of her head, she started throwing a fit. She was swinging her arms around and wiggling all over the place- it is good to see that she is a little fighter though as we know we need that! After the ultrasound tech left, I tried calming her down for about 10 minutes with no luck. So, we decided that I should try holding her- that worked like a charm! So, I got to spend the next hour and a half just holding her.

After we put her back in her isolette, the respiratory therapist came by to do some practice exercises for eating. She is currently receiving all of her lipids and nutrients through IV's. So, when the day comes for actual milk, it will be a slow and long process. Starting with making sure her body can adjust to food and eventually leading to oral feeding.Most of the time, that is what keeps NICU babies in the longest is adjusting to eating. She warned me that it can be one of the most frustrating things but that it was good to be prepared. She then taught me some things that I could do to help her practice for the future.

After that, things got a little crazy in the NICU. All I could hear were nurses and doctors running around as one of the babies was taking a turn for the worse. It was so scary to hear, and I immediately began to pray for the family. I had no clue what was happening, but knew that they needed prayers. As I was leaving, I got the opportunity to meet the babies Aunt and Uncle. We shared stories and promised to begin praying for each other. Thankfully, the baby has stabilized and is doing better. Please pray for this family!

Then, I left to go get Kinsley and we went home for a little while. She had a wonderful day at daycare and then we got to play at home for a little while before we headed back up to the hospital. Once we were back, we got to see another one of our favorite nurses (I have quite a few favorites at this point because they are so wonderful) and spend some more time with Sadie. She was resting peacefully which is always wonderful to see.

I will always end with my verse for the day, praises and prayer requests. Here is our first set.

Verse for the Day:
Exodus 14:14 "The Lord will fight for you; you need only to be still."
While I was holding Sadie today, I read her the story associated with this verse. If you go to Exodus chapter 14- you will find part of the story of Moses and the Israelites. In this part, Moses and the Israelites have left Egypt and are headed towards the Red Sea. God then hardens Pharoah's heart so that he will regret his decision to let the people go and chase after them. So, the chase begins. As soon as the Israelites see Pharoah and his army, they began to doubt the Lord and be come angry with Moses. Moses then tells them not to be afraid and tells them that the Lord will fight for them. You all know the rest of the story, the Lord tells Moses to raise his staff and divides the waters of the Red Sea so the Israelites can pass on dry land. Pharoah and his army chase after them and the Lord causes them to become confused. Once all of the Israelites make it to the dry land, he allows the walls of water to cave in. Pharoah and all of his men are drowned in the sea.

As I read this, this time, I noticed two things that I can relate to at this point in my life.

1. The Lord purposely hardened Pharoah's heart and had him chase after the Israelites. For the Israelites, it seemed like a bad thing as they saw them chasing after them. However, the Lord allowed them to face this seemingly scary trial and no harm came to them. The situation seemed hopeless as they saw Pharoah's army on one side and a sea on the other. For man, this was an impossible situation but for God it was not. He wanted to show that nothing is impossible. And He did just that!

2. The Israelites doubted the Lord. This seems crazy to me- they had already seen His power and still they doubted Him. How could this be? If I am honest with myself, I can see that I do this all the time. He has already done so much for me and yet I still allow fear to creep into my life and I do not trust Him. I must realize that He is in control and throw that fear out the door, or I will be just as crazy as the Israelites.

Praises for the Day:
1. Her latest blood and eye culture still shows no sign of infection.
2. Her spinal fluid shows no sign of infection.
3. Her platelet levels have risen.
4. Her urine has been blood free for almost 24 hours.
5. Her lactate and blood oxygen levels are great.
6. Her respiratory rate has slowed down to better levels.
6. I got to hold her again today!

Prayer Requests for the Day:
1. We still have to wait 24 more hours to have finalizations on her blood culture, eye culture and spinal tap. Pray that they continue to come back with no growth (this will mean the infections are gone) so that we can stay healthy and be ready for surgery next week.
2. Her lungs are considered to be slightly "damp." This is not a surprise to the doctors as her PDA has been open and we have not been able to band her pulmonary arteries yet. They are giving her lasix, which is a diuretic and should help flush the fluid out. Pray that this works and she has no bad reactions from the medicine.
3. We are waiting on results from her head ultrasound. Pray for favorable results and wisdom as the doctors make their recommendations.
4. We are waiting recommendations from the Infectious Diseases (she does not have any diseases, these are just the people who specialize in infections) Specialists. Pray for wisdom as they make their recommendations to Cardiology.
5. Pray for all of her nurses, they do such a wonderful job and we are so blessed with them!

2 comments:

UnknownMarch 20, 2014 at 6:40 PM
I commend you on your decision to blog this extremely hard and frightening event. Sadie is absolutely gorgeous and very lucky to be blessed with the parents and family that she has. Your first verse posted is perfect and one that has helped me jot only in life but in my pregnancy as its not been the easiest. Sometimes we miss the slightest blessings or smallest achievements because we are so caught up in the hustle and bustle of life and alot of us often try doing it on our own. What a mighty gracious God we serve that were never alone and always "HELD" ( check out this song by natalie grant ). You guys and ms. Sadie are in our thoughts and prayers.
ReplyDelete
Replies
CandaceMarch 21, 2014 at 11:48 PM
Thanks Ashley! It is so true and I will definitely check that song out. Praying for you and your sweet Haylee too!
ReplyDelete
Replies

Add 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

Wednesday, March 19, 2014

March 19th: 9 Days Old!

2 comments:

Blog Archive