When It Rains..

I am sure we have all heard the phrase: "When It Rains, It Pours." I feel like this perfectly symbolizes our life... but in more than just the typical way. Although it is definitely pouring for us with hardships, it is also pouring with blessings.

Sadie was discharged from the hospital February 10th. As we said our goodbyes to our family in the CVICU.. we promised not to be back for a while and we have technically kept that promise. However, we have not said goodbye to the hospital for that long. Here is the next chapter in our story.

I love how much
they love each other!

Life at home has been different, but wonderful. Pre-surgery, Sadie was happy, outgoing, spunky, fiesty, thriving and eating. Post surgery, she is all of those things except eating. Since we have been home Sadie drank 3 partial bottles for me out of the 78 bottles she should have had. In technical terms, we are now facing an oral aversion. Whenever I bring the bottle near her mouth .04% of the time she has pushed the bottle away. Whenever I allow a drop of milk or a bit of food to touch her tongue, she immediately begins to gag. Sometimes, it is followed with vomiting others it is not. I have been told that some adults do not have an appetite for up to a month following heart surgery- so I know we will overcome this hump but it is hard after all of the progress we have made. We suspect her oral aversion and new super sensitive gag reflex is due to the emergency reintubation combined with the heart surgery. Well, up until Friday afternoon- that was our struggle.

Friday afternoon, everything changed. It started raining. The rain came in softly in the form of a fever. We were worried, but gave her some Motrin and hoped it was due to teething. Friday night she was fussy- but got some sleep.

Saturday, the drizzle started. Although at points it felt like I was drowning in a flood. Zach was off golfing with our lifegroup boys in the morning and I was set to go to a Little Mended Hearts meeting. We had a nurse there to watch Sadie, but I was uncomfortable due to the fever. Sadie was somewhat happy, so I sent the nurse on her way and it was me and the girls. That was when the rain picked up. Sadie started fussing- no matter what I did, she cried. I bounced and bounced and bounced, like I had never bounced before (and if you know me this is is a lot). When she was not sleeping, she was crying. When she was sleeping (which was about a 30 minute period) she was moaning. Zach got home and did his best to help, but NOTHING was working. I knew something was wrong and was on the phone all day with her pediatrician trying to determine a cause. After switching to pedialyte, trying rice cereal and trying her formula again- we knew it was time to head to the ER. As soon as we started driving, Sadie fell asleep. I thought about turning around, but knew I should not.

More pouring. Generally, when I take Sadie to the ER- I have either my mother or Zach- this time I was all alone. My mom and dad are both sick and Kinsley is sick too, so he had to stay with Kinsley. It is difficult doing ER trips and even worse by yourself. But, off we went.

I managed to sneak a smile from
Sadie while we waited in the ER.

We arrived at Wolfsons and I signed Sadie in, praying that we would get back fast so the PICC team would be able to get her IV. Immediately after we signed in, we were called back. (One of the few advantages of having CHD.) However, once we got back there, things were slow moving. The PICC team was already gone so our nurse tried to get an IV. She was successful on the first try - which is very unheard of with Sadie and we were all thankful. However, she was not able to get all of the blood she needed, so they had to do a femoral stick. The doctor stuck a needle directly into her femoral artery to get the blood. Do not try this at home. We did a few x-rays and grabbed some urine for testing just to be safe. The chest x-rays looked great, but we got news that the blood clotted. About this time, the pouring began. First, I got a call from Zach letting me know that Kinsley had a fever. REALLY? Next, I got the news that we were being admitted- Sadie had a UTI. I was devastated, Sadie had been clean since her surgery and I was not ready to start this process over again. Then I got news that we were not being admitted to the CVICU.  Clearly, it is good that Sadie was not critical- but that is our home away from home and it was strange. We packed up and headed to Wolfson 5.

Sunday was a day of waiting. We had to wait for the results to see what type of bug Sadie was infected with. After those results came in, we would have to wait for more results. We would have to see what the bug was sensitive to. If it was sensitive to oral antibiotics, we would get to go home... IF it was not, we would stay here for the course of the IV antibiotics. I found out late Sunday night that the bacteria was a gram negative bacillus.. but that did not tell me the specific type, I did know that those were the more difficult infections to fight. Yet, I still hoped for the best.

Sadie playing with her toys.

Monday was a day of more pouring- Kinsley still had a fever so we were in a bind trying to figure out what to do. Because we are not in the CVICU- I am not comfortable with Sadie being alone for any amount of time. In the CV unit- Sadie is surrounded by nurses who know her and love her and are within steps of her room at all times. In a traditional room, Sadie has great nurses but they also have many other patients and the rooms are in a hallway rather than right next to the nurses station. So, I was at the hospital with her and Zach took off and then found help for Kinsley. It was also a day of answers and waiting. I woke up hopeful that it would be eColi and that there would be an oral option to defeat it. One points of sunshine broke through as it was ecoli... I knew ecoli had oral options available so I was grateful. But, we still had to wait for sensitivities. After waiting for what seemed like forever- I got news of the sensitivities- and there was one oral option available- SUNSHINE STREAMED THROUGH! Sadie had lost her IV moments before and I was so grateful that she would not be have to get a new one. A cloud came in the form of my nurse as she informed that the only oral option was nitrofurantonin which was not approved for babies.. I pushed that cloud out of the way quickly and through on my shades as I knew Sadie was allowed to to take Nitro- we had been on it before! She spoke with the doctor who said he would consult with ID. I waited for the great response and found out that she would not be able to take the Nitro as it was not strong enough to beat the infection and only had a small chance of working. We were staying, for at least 7 days. So now our wait begins.. but my story is not over.

Thus far I have told the sad part of all of the pouring. Now I will tell you about the outpouring of blessings. It is amazing how God has provided time and time again. Lets back track.

Blessing 1: Home Sweet Home- Sadie had a fight with chyle after her heart surgery. Although it was terrifying, it was short lived. We had been told it could last anywhere from one to four weeks. Well for us it was just a few days. Thank you Lord for that blessing.

Blessing 2: Sadie's voice- Sadie has not had her voice back since surgery and it has returned since she has done quite a bit of screaming in the last few days- it has also returned in the form of saying mama and dada again!

Blessing 3: Megan Hall, The Parkers, Fred and Dan and Nicole- Saturday was not a day for eating for me- it was a day for trying my best to calm Sadie. Zach made me a quesadilla for lunch- but by the time I got to the ER I was famished and knew I would not be able to leave to get dinner. I debated options and went to Facebook. Within minutes I had a message from Megan- she was bringing me dinner. Shockingly, I had many other responses and also had to turn people down. Sunday night, the Parkers brought me an amazing home cooked meal. Monday as I could not leave the room again, Fred bought me Chik-Fil-A and tonight, Dan and Nicole brought us an amazing home cooked meal as well.

Blessing 4: Mrs. Baxter- Mrs. Baxter was my cheerleading coach in highschool and so much more than that! She has been a friend, mentor, advisor and prayer warrior in my life! And, she is doing a huge favor for me that she would probably kill me for saying out loud- but it is huge and I am so thankful none the less.

Blessing 5: Our CV Family- Even though we are not in the CVICU, we have already seen so many of Sadie's nurses. Each one that has dropped by has brought a huge smile to both of our faces. Thank you so much Linda, Stefani, Rachel, Ina, Loren, Bridget, Chelsea, Fred and Stacy! It is so great to know that you guys care so much.

Blessing 6: Mima and Aunt Traci- My mima and Aunt Traci have stepped up and helped watch Kinsley while Zach has been working and I have been with Sadie. It is hard trying to manage one sick child, let alone two! Thank you so much for being willing to drop everything you have planned and take care of our sweet Kinsley.

Blessing 7: Sadie's doctors- Dr. Lacey and Dr. Mary have both been crazy enough to give me their cell phone numbers and I overuse them. They have both blessed us so much with their constant attention to Sadie (and me.)

As you can see, in spite of the hard things we face- we are also receiving an outpouring of love.


Romans 8:28 says: "And we know that all things work together for good to those who love God, to those who are called according to His purpose.

When we are in the midst of hard times, it is hard to remember what we know... that all things work together. Not just some, all. God has a purpose for each and every event in our life. Even when they seem unpleasant or it seems that is impossible for something good to happen, the Lord can use it. I have seen countless times how He has blessed us through Sadie and how He is blessing others. I do wish that I could trade places with her, but I am grateful that she will not remember most of this when she is older- but that she will have an amazing testimony of God's grace and strength.

So after all of this, I just want you to know that I am thankful that when it rains, it pours!

When I Fail

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

I like to write when I feel encouraged... I like to write when there is good news to share... I like to write when I feel strong... and I feel like I should feel this way now, but for some reason I do not. Maybe it is just the roller coaster of emotions. Maybe it is because I feel like I do not see an end in sight. Maybe it is because I have not been able to spend as much time with Sadie as I would like going back to work...

 But, I am experiencing joy IN this moment as I struggle to type. I am struggling because Kinsley is sitting on my lap trying to type at the same time. Her laughter is infectious.. and now she is gone. She has just run off to get medicine from grandma. It is nice being home, but I think I am just exhausted.

Through all of this, I have received more compliments than I can imagine. People who are amazed at my strength, but I do not feel strong through all of this at all times. I know that when I do have strength, it is only because God has given it to me. Before we experienced this, I remember reading the blog of another mother- it was a mother whose baby had been born with the same thing as Sadie. I remember being excited and nervous to see a new blog post- but finding such hope in her strength and wondering where she got it from... thinking I could not have the strength and now I know that I could not have the strength alone. God gives you the strength. He gives it through His word. When I look, He gives me the words I need. When I listen, He gives me the strength through songs and stories. He also gives me the strength through others. He gives it through the people He has placed in my life. My amazing husband who has stayed strong by my side and is always there to support me- in whatever way I need. Who has done his best to provide a normal life for Kinsley. Who has spent many nights alone at home as I have been at the hospital with Sadie. Through my sweet Kinsley who brings me unmeasurable joy. Joy through her laughter at the silliest things. Joy through her exclamations of wonder- if you have never heard her say "ohhhhh" in excitement, you are missing out. Joy through the silly things she does and says. Joy through her big hugs and kisses. Joy through her love! For my parents and Zach's parents who have supported us through all of this. They are constantly helping us balance the craziness life has thrown at us. They have also given us amazing examples of how to be parents and spouses. Through our family, church, work and friends- we have so many amazing people who call, text and show up just when we need them. I know that God has put us in this place, in this situation for a purpose. He has such big plans for Sadie and I can not wait to see what they are.

On to the update...

The last few days have had their ups and downs. Monday was pretty good as Sadie was in a great mood and seemed to be feeling well. She was eating and doing very good. Monday night was not great, but not bad by any means. Tuesday, Zach's parents arrived and I was so excited for them to have a great day Sadie sitting. That did not happen, instead Sadie had a rough day. The chest tube they inserted was inserted too far and had to be un-sutured and re-sutured twice. This is a painful process, so she was given sedatives. Weaning her off of the medicine has been difficult and giving it back to her makes it even harder. In addition, each time they took the tape off of her skin, it was tearing at her skin more and more. And to top things off, each time they pulled the tube- it just uncoiled so they did not get it to where they needed it to be. Therefore, they had to move it again today. Fortunately, they were able to get it to the right position. So now we recover.

The recovery from this process is going to be a long and slow one. We have been told it can take anywhere from a week to a month. So, we are now just waiting. The problem is when you are waiting in a hospital, it makes it harder. Harder for Sadie as she is stuck in the same bed for 24 hours at a time. This makes it harder for her to be active and break up the fluid in her chest. It is also harder as she is constantly being checked on. This is obviously very important and helpful, but it is hard as she does not like being messed with (who can honestly blame her though). Harder for us as we are stuck living in two different places. Stuck trying to balance work and taking care of our children. Stuck waiting. But, waiting is what we will do. We will wait for her body to stop producing chyle. Once the chyle has stopped draining from her chest tube, they will clamp the tube and X-ray her in a few hours to see if their is a build up. If there is, they will unclamp and we will wait some more. If there is not, we will wait a little longer to ensure it isn't going to come back and then hopefully be able to go home.

Fixer Upper

Sadie and Kinsley watching Frozen before Sadie's surgery.

As I am writing this post, I am listening to the song "Fixer Upper." I am sure most parents who are reading this know exactly what song I am talking about, and can sing every word. Even Kinsley, my two year old, can sing the last word of every line. The song is about fixing Kristoff up for Anna, until they realize Anna is engaged.. then she becomes a fixer upper too. At the end, they talk about how people do not really change but that true love is the only actual "Fixer Upper."

Disney partially got it right, but not completely. Their version of true love is far from the real stuff. Christ's love is the only thing that can truly fix us up. His selfless sacrifice on the cross for us. That love that gives us a passage to eternity with Him. It is that love that helps me get through hard days. Days where I do not know what is going to happen with Sadie. Days where surgeons cut into her. Days where doctors rush into a room. Days where I do not have the answers. Days where I know God is the only one with the answers.

Romans 8:37-39 No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.


God has been fixing Sadie up and me through this long process. He has been using doctors and nurses to help fix her up along the way and He has been using His word and others to fix me. We both have a long road ahead of us, but we have the love of Christ and the love of so many people (including you) helping us along the way.

Relaxing after extubation!

Sadie is currently being "fixed up" again. Last night was a hard one as they could not get Sadie under control in the beginning. She is a fighter to the end and was showing that off last night. I think she must have the Rocky soundtrack in her head as she just keeps going and fighting. But, when she is intubated that is a bad thing. I know I talk about it a lot, but I am going to explain it now- just so you know what it means. Intubation occurs when they put an ET tube in a patient's trachea and the vent (machine attached to the ET tube) breathes for the patient. While the ET tube is in, the patient must be sedated so they do not try to pull it out (especially feisty children). As a result of the sedation, the patient is also very sleepy which tends to make it harder for them to breathe- and takes away their drive to breathe. Sadie is a patient the requires a lot of sedation- and last night, even though they maxed her our on sedatives, she was still fighting- so they had to paralyze her. As a parent, it is awful to see your child paralyzed. I could see that her heart rate was still elevated, so I knew she was still angry. But, if she was not paralyzed, she could have pulled out her ET tube and she would not have been strong enough to breathe on her own. And, if she pulled it out, she could cause a lot of damage to herself. So at the beginning of the evening last night, while everyone else was watching the Super Bowl, we were watching the Sadie Bowl- it was Sadie versus the nurses and doctors. She was in the lead in the beginning, but eventually they gained control. After finding the right balance of sedatives and paralytics, her heart rate and fever decreased- showing that she was finally calm and comfortable.

Sadie's PICC line is inserted under the sleeve.

This morning began with the search for a central line. Sadie lost two arterial lines and an IV yesterday, and with her long stay ahead of her a PICC line was necessary. More medical knowledge for you- a PICC is similar to an IV except the catheter is inserted in a large vein and then is threaded all the way to a vein that is right above her heart. They use PICC lines as they last much longer than IV's and they can draw blood from them, so less sticks for Sadie. Since we are going to be in the hospital for a while (anywhere from a week to a month), this will help a lot. After about an hour, Holly successfully inserted the PICC line and added a new peripheral IV.

After the PICC line was removed, they began the process of extubation. As Sadie's respiratory therapist puts it "it is like a nice dance trying to figure out the correct amount of sedation for the patient's, especially Sadie." They had to wake her up enough to breathe on her own, but also keep her comfortable enough that she would not rip it out before she was able to breathe on her own. Extubation was a success and she is now getting oxygen through a nasal cannula at a low rate. Hopefully, once she is fully awake (maybe before I am finished writing this) we will be able to take that off as well.

Sadie's beautiful foot cast that
Courtney put on to protect her IV

Moving forward. We will be spending the next few weeks in the hospital as Sadie is recovering from her chylothorax (leakage of the chyle into her chest cavity). We all have chyle in our body, but generally it is transported through our lymphatic system to our liver and to our fat tissue. With Sadie, somewhere within her lymphatic system there is a leakage. 90% of these leakages close on their own with time, but we must first get that time. They will start by switching her to a new formula that does not have a lot of fat in it, instead it has medium chain triglycerides. MCT's are fats that are easier to absorb and are absorbed directly into the liver, rather than having to travel through the lymphatic tissue. Hopefully, once we start feeding her this special formula that leak will have time to heal and heal on it's own. If that is the case, they will leave Sadie on the formula for a few months and then we will be able to try a normal diet again. If we start feeding her this formula and her chest tube continues to leak, she will have to go to strictly TPN (nutrition through IV). We should start feeding her soon and I will update you on that process as soon as I know more!

And just a side note (or maybe an end note- since this is the end not the side), I finished this before she woke up- I am getting faster! Hopefully the next time I write you, I will be able to put a current smiling picture of Sadie. For now, we will do a throwback (even though it is not Thursday).

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...