It's Been Too Short...

Well, the last time I wrote, it had been too long..

this time it has been way too short.

I have always been scared to say things are going well. I do not consider myself to be a superstitious person, but I feel like when I say things are good and finally relax, that's when things change. And change they did... We are back to Sadie being intubated, sedated, having a lot of IV pumps (with meds and TPN), on CV service, and having a million numbers on the screen. This is the story of how we got there...

Friday was a great day. I had my baby back. Sadie smiled, laughed and was my normal feisty baby. Mima had the privilege of Sadie sitting while I went back to work for the first day. The kids were great and it was nice to see everyone. Friday night she woke up a few times, making sure I was nice and rested for the race in the morning, but it was never bad.

Saturday morning I woke up and got ready to go run the Wolfson's 55K Ultra Relay. Sadie was a little fussy, but not bad. I spoke with her cardiologist in the morning, got a few smiles and then was on my way.

The relay was an amazing experience. We decided to form a team at the last minute, and as I saw our team members running- I cried. It was a beautiful thing to see them running for my girl and so many others running.

As I hit the pavement, I was excited. Shea tagged me in and it was so exciting to see
her cross the finish line. Shea is one of my friends who has a lot in common with Sadie- and this was her first 5K since her last open heart surgery! She did amazing.

Running through the gates, my friends, family and some of our CV nurses cheered me on! Once I was on the pavement, I immediately began to pray- thanking God for my sweet Sadie and his provisions for her. I am so thankful for Wolfson Children's Hospital. Everyone there has been amazing to us, and I realized that even more this morning. Along the route, there were pictures of the 55 children the race was honoring. I had the privilege of praying for each of them. As well as the privilege of praying for myself- that I could make it. After I made it past the two mile mark, I could see the home stretch. I was tired, but more mentally than anything else. So, I thought of all Sadie has pushed through and kept going.

Once I got near the end, I passed the field where my friends and family cheered me on. Lorie Hincman ran along the route with me and gave me such encouragement! Then, I entered the stadium. It was a crazy feeling running in their. I had been in this stadium countless times, but never imagined I would run on the field. Much less run for my daughter who was in the CVICU recovering from her second open heart surgery. I had to round the whole field, which was exciting before I had already run three miles for the first time ever, but there were volunteers encouraging us along the way!! I came out of the stadium and finished to the cheers of nurses, doctors and TEAM SADIE! It was my first run and it was exhilirating. I never stopped and finished in 34 minutes- Sadie was on the mend, I was doing good, it was a great day!

Half an hour later my mom called me to give me an update on Sadie. She had been fussy for most of the day. That was odd, but the nurse was attributing it to boredom. We headed to lunch and then I headed home for a quick shower. After the shower, we headed back to the hospital where Sadie was still whining. Her pulse ox was reading weird numbers, but would go back up to the high 90's so we attributed it to a bad probe.

We headed into the night hoping Sadie would get a good night's rest and be back to her spunky self in the morning. Well, the night was a lot of the same. She would sleep for a bit and then wake up. Over night, her cry got weaker and weaker which made me nervous. I almost asked for an ultrasound, but she had finally fallen asleep so I did not.

The morning came and I went to her bed side. One of my favorite nurses was in the room, and we knew she did not look good. Her breathing was very labored and heavy. Her skin looked very modeled and she moaned with every breath. We paged cardiology and the PICC team because she had pulled out her IV over night. We began getting ready to give her a bath while we waited but something did not look right. I turned the light on and realized she looked far worse than we imagined. We called again for cardiology but they were not answering. Luckily, we are in the CVICU and so the intensivist was right outside our room. I asked Mike to come in and he got to work. He listened and realized that he could not hear her breathing through the left side of her lung. One of her surgeons, Dr. Shillingford was also nearby and came in the room to help as well. They ordered a chest x-ray stat and ordered her to be intubated stat.

I exited the room and went to call Zach as he was home with Kinsley. Kendra immediately grabbed me to make sure I was okay, obviously I was not, and prayed with me. She then talked me through what was going on and let me call Zach. I am so thankful that she was working today! I went to the playroom to try to call more family members and cry. Moments later, Rachel walked in to explain everything and give me hope. She then escorted me to the nurses station and let me sit right behind the desk in front of her room. She explained I was family and could be there! I am so thankful for them. Meanwhile, Bridget and Danielle were hard at work taking care of Sadie in my room with a ton of doctors, nurses, respitaory therapists, x-ray techs and echo techs. I often pray for the people whose rooms are filled with medical professionals- but this time it was ours. It is always a scary thing- but also reassuring as everyone is working to make sure your baby is okay.

Moments later, I spoke with Dr. Shillingford who informed me what was going on. Sadie's left lung was completely covered by fluid. They had already intubated her and were working on getting an aterial line and IV access. Next, they would put in a chest tube to drain the fluid. After speaking with him, I spoke with Dr. Lacey and Dr. Kuebler who both gave me more information on the fluid in her chest. If it was a serous fluid, that would mean we would just need to drain. If it was chyle, that would be a problem. Well, we do not have official results, but we are fairly certain it is chyle. Chyle is a milky substance composed of fats and lymphatic fluids. We are not sure why Sadie is leaking this, as there are a number of possibilities, but we do know she will have to go NPO for a while and be put on a low fat diet. Unfortunately, somewhere along her lymphatic system there is a leak that is leaking the chyle into the her left side of her chest instead of delivering it to her body. They drained just over 350 cc's of chyle out of her chest, which is equal to 10.5 ounces of fluid . It had completely flattened her left lung, pushed her organs to the right side and made it where she was only breathing through her right lung.

Sadie is recovering now, but we have a lot of unanswered questions as we try to figure out why this happened. The surgeon's could have nicked something during surgery, but this is unlikely as it took so long to show up. She could have a clot that is clogging things up and causing things up but we do not know. So now, we begin the searching and waiting process.

What I do know, is that God is sovereign through all of this.

I think back to the story of Rahab. Rahab was a prostitute who lived in the city of Jericho. She did not have an easy life, she had to sell herself to make a living. I am sure that she did not think that she would be one of the 188 women named in the Bible, or that she would help change the course of history. But, she did just that. She listened to God and followed His will and saw that He was sovereign. The house that Rahab worked to live in was on the outskirts of the city and was the perfect place for the two spies to be able to sneak in and out to scout Jericho. She was used by God to help the Isrealites conquer Jericho! She saw God's sovereignty in a bad situation. Although it did not seem ideal, it was what He needed.

I too see God's sovereignty in a bad situation. A few days ago, I was so frustrated that we were going to be stuck in the hospital another 10 days. I was ready to be home and not be living out of a suitcase on a couch. I was ready to have my children back together, to see them laugh and play together. But, I knew that was not God's plan. And boy am I thankful. If I had been back at home when this happened, it could have been a different story. So, I am thankful. I am grateful for fast acting doctors and nurses. I am thankful that even though Sadie was no longer on CV (the intensive care) service (because she was doing so well), the doctors still rushed in to help her. I am thankful that I have nurses who care for Sadie and me and take care of Sadie and me. I am thankful that God is in control.

"When we heard it, our hearts melted and no courage remained in any man any longer because of you; for the LORD your God, He is God in heaven and on earth beneath." -Joshua 2:11

Just as Rahab recognized God's sovereignty after hearing about all the God had orchestrated for the Israelites, I recognize God's sovereignty as I see all that He orchestrates for my sweet Sadie Grace.

Until next time...