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...

Get Ready For A Long One...

Well, it has been a while since I have posted here, because we have spent a while at home. Since Sadie's ureteral reimplantation and G-tube placement surgery, we have only had one visit to the hospital (a quick ER visit after her G-tube was accidentally pulled out). It has been wonderful having time at home with our family of four. We had the pleasure of spending a very wonderful, and memorable Thanksgiving at home with my family, that was also heartbreaking as we lost my Aunt Linda to a hard fight with cancer. Then we got to travel to Tampa for Christmas with Zach's whole family. During this time, Sadie blossomed she began to talk, roll around and got very close to sitting up on her own. It was amazing to see her happy and healthy. It was wonderful for her to begin to trust strangers and not see her examine every person as if they were a threat. She was thriving- but we knew this was a short lived experience. We knew she would have another major hump to face- her second open heart surgery.

Surgery was originally scheduled for January 28th, but then moved up to January 14th. On Friday, January 9th, we received a call that her surgery would be moved to the 21st. We were so ready to get it done with, that it was extremely deflating- but we knew God was in control. So, we held on for an extra week and prepared for our pre-op appointment on January 20th.
 

January 20th arrived and we showed up at the hospital at 10 am. We knew it was going to be a long day, but did not realize just how long. After speaking with the surgeon's P.A. and telling them of Sadie's runny nose and slight cough, we were told surgery may be postponed again, but anesthesia would make the call. Immediately my worries switched from worrying about the actual surgery, to worrying about if we would have surgery. Looking back, I know that was actually a huge blessing in disguise. So, we waited to speak with the anesthesiologist.. and waited.. and waited.. after waiting for what seemed like forever, we spoke with one anesthesiologist who thought Sadie was okay, but was not the final say. She sent us for an X-ray. By this point, Zach had to leave, but Fred showed up to save the day. He stayed with Sadie and I through the rest of the day. Sadie did not like her x-ray, but made it through. After seeing that her lungs were clear, we waited for the lead anesthesiologist, he was actually the one who worked with Sadie for her first surgery. He listened and looked and decided that she was good to go, so it was off for blood work. Unfortunately, they sent us to the lab and the nurse was unsuccesful. On her first try, she made the tourniquet too tight and gave Sadie peticia. After that, she refused to try again (which I was happy about). We went back upstairs, not sure of what to do. I suggested we call the PICC team, and Fred made the call. Holly came to our rescue and she and Pam drew the blood succesfully. After seven hours there, we had the record for longest pre-op and the all clear to go home. I packed Sadie up in the car and headed to get Kinsley. As I pulled into UC, my phone started ringing- it was Dr. Lacey. I nervously picked up. She informed that Sadie's white blood cell count was high and that we could either check into the CVICU early for more bloodwork or cancel surgery... we opted to check in early.

The evening of January 20th was just as eventful. After we checked in, they did a urine check and tried to get blood- but failed. The PICC team was off and Sadie's veins roll- after two nurses trying two times, they called Dr. Ceithaml (her surgeon). He told them to stop and I went to bed wondering if surgery was happening...

The morning of January 21st, I woke up and started to get ready.. we were on for surgery. After signing all of our papers, we rolled down to pre-op and said our goodbyes. As a parent, this is probably the hardest part. Even though I know God is in control, Satan still creeps in my mind and tells me this could be the final goodbye. At 8:30, after many tears and pictures, they took Sadie back. It is a crazy feeling watching them walk away with your child. Part of you wants to scream, "NO", but the other part knows it is for the best. We headed to the Ronald McDonald room and began our wait. There are many days where I walk by the room and see families in their, or in the general surgery waiting room, and I wonder. I wonder where their child is, what they are feeling, what they are facing. Then, I pray. And today, I could feel the prayers of everyone around. It is crazy how God can give you such peace in the hard times. It is times like these when I am so thankful to know Him. I do not know how people could face these situations without Him by their side. Sadie's verse is Exodus 14:14: "The Lord will fight for you; you need only to be still." Not only was He fighting for my baby on the operating table, He was also fighting for me and everyone else who loved her. Our first call told us that all of the lines were placed and that Sadie was intubated. Next, they would begin to cut through the scar tissue. We knew this would be a long process as they had to be very careful not to cut anything important. At 12:15, we received the call that Sadie was on bi-pass, the real work had begun. During this stage, they would remove the stent in her PDA, reconstruct her aorta, close her VSD, remove the subcutaneous membrane below her aortic outflow track, remove the bands off of her pulmonary arteries and repair her pulmonary arteries. During the waiting time, we had the pleasure of running into Dr. Lacey who gave us a quick update. They had successfully resected and added onto her aorta and they had closed her VSD. They were moving onto her pulmonary arteries but they had a lot of work to do. Around 3:30, we received the call that they were finished. They took her off bi-pass and began the watching process to ensure everything was good. More waiting. After what seemed like an eternity, we got to meet Dr. Blyweis. He informed us that the surgery had gone as well as could have been expected. Unfortunately, due to the banding, her pulmonary arteries were in bad shape but they repaired them as well as they could have. We were told we would need intervention in the future, but hopefully that can be accomplished through the cath lab. Her aorta was succesfully repaired and the VSD closed. The membrane below her aortic outflow tract was "unimpressive" so they left it alone. Around 5:30, we got the call that they were about to bring her up to the CV unit. We were ecstatic- we would get to see our baby girl soon.

Well the clock ticked... and ticked... and ticked...! At 6:00, we spoke with Dr. Ceithaml and then shortly after we spoke with our anesthesiologist, Dr. Bryskin. Then.. the clock ticked.. and ticked.. and ticked.. I began to worry, but after a few calls to friends was calm again. Finally at 7:30, 11 hours after we left her, we got to see our precious girl again. It was a scary and beautiful sight. Seeing your child after surgery is something I can not explain. She did not look like my baby girl and was still heavily sedated. Her chest was open and only covered by a thin covering- we could actually see her heart beating under the covering- and we touched it. When we looked up at the monitor, we saw a million numbers- they were monitoring heart rate, blood pressure, chamber pressures, temperatures and so many other things. The greatest number was seeing her saturations. Most people live at 100%, meaning that their blood is fully oxygenated, Sadie had been living with her saturations in the mid to low 80's. And hers were now showing up as 100! It was great to see. We had made it through the first big step- now to step 2... RECOVERY.

The next couple of days were a blur. Although Sadie was on very strong medicines, she was still fighting hard and required a lot of narcotics. To give an example, she used an entire bag of Fentanyl in one day. This would take the average person four to five days. Because of all of her surgeries and hospitalizations, Sadie has developed a strong tolerance for the medicines. Our biggest accomplishments came on Friday and Saturday. Friday, they closed Sadie's chest. The OR team came into the room and stitched her up. Then Saturday, they extubated her, removed her chest tubes, and removed her pacing wires. It was amazing to see the difference. as soon as they removed all of that- she relaxed. She was no longer requiring boluses of medicine and she began to sleep- she slept for two days straight. After she slept, we began the process of weaning her off of her narcotics. This was a very hard time for me. Sadie was not Sadie- she was awake for two days straight- but she was not her. She was not feisty, nor was she was loving. She did not seem to recognize me or anyone else. We even brought Kinsley into the room and she barely responded. Sadie LOVES Kinsley more than anyone else- so this was shocking. I asked Fred if it was possible for her to have a personality change and he assured me everything would return to normal. He was right, but I was very nervous while I waited.

When you are in the NICU, you are often told to expect things to be one step forward and two steps backward. It felt like this at times, but we were very fortunate. Sadie did great from a heart standpoint. Her function was beautiful. Our biggest hurdles were lungs, fever, blood clots and feeding. Sadie had a very high fever for 6 days post-op. We sent multiple cultures (blood, urine, and sputum) but everything came back negative. Her lungs were also surrounded by fluid, so we had to do multiple x-rays and just had to wait for it to clear up. Sadie also developed another blood clot in her right leg. Shortly after surgery, I noticed that her right leg was colder than her left and requested an ultrasound. Unfortunately, the results came back that she did have a blood clot. Sadie will have to have shots twice a day for the next 6 to 8 weeks. At that point, if the clot is done, we will be able to stop.  In the area of feeding, Sadie began vomiting. So, we had to rework her feeing schedule. We started slow and are still working..


I write all this now, as we are back in a good place. Sadie's heart is doing great, she has not had a fever in 3 days, she is eating again (even a little by mouth) and her lungs are clear. She is still in some pain, but my baby is back. I have had smiles, I have had laughs and I have even had my crazy feisty baby back. Our recovery process has just begun, but we have faced the biggest hurdle. Although Sadie will need more surgeries in the future- we should have a good break. We should get back to the point of letting her be a baby. Our next major hurdles should be crawling, talking, teething, temper tantrums, potty training.. all the things parents look forward to and dread. We know that we are so blessed to have our sweet Sadie and are ready to face whatever the future throws at her and us.

We have been extremely blessed through all of this. Blessed by our families, friends and our family at Wolfsons. Our families have been by our side through everything. My parents have been by our side constantly as they live here and help us with both of the girls and are a constant support system. Zach's parents and siblings have spent countless weeks and weekends up here- helping us clean, take care of the girls and providing us with love. Our friends have prayed for us, cooked for us, donated for us and have constantly loved on us!  The people at Wolfsons have become our second family. As Sadie has spent over 100 days in the hospital- the nurses, doctors, techs, ACPS and staff have become our friends and family. I know that each person cares for Sadie as if she were their own. Their positive attitudes and constant warmth bring a smile to my face. I am excited to see who is working each day as I get to spend time with them. I love that I know Sadie is well taken care of and loved. This is a blessing I can not explain.

Splash Mountain

The past seven months have been a whirl wind of emotions. As I sit here typing, I am trying to think of something to compare it to and my first thought is a roller coaster, full of ups and downs, excitement and screams. But the more I think about it, the more I realize this is not just any roller coaster, it is Splash Mountain.

Splash Mountain is unlike most roller coasters we see today, as it has a story and I think that story resembles everything we have faced. You board your little log and start with a steep climb up hill, followed by a short drop to a briar patch. This is the introduction to the ride, the notice that something is starting soon.  For us, our introduction was not a briar patch, but nausea. I felt the nauseous feeling and knew we would be having another child soon. After taking a test, it was confirmed, God had blessed us with a second child.

After making it through the briar patch, you get to see the "daily life" of Brer Rabbit, where everything is good and he is "just living." Doing laundry, and avoiding Brer Fox and Brer Bear. For us this was the time up until our 20 week sonogram. We were just living, day by day, preparing for Sadie's coming, without a hint of the trouble that was ahead.

About halfway through the ride, you begin to see the dangers as you are meet Brer Fox, who has captured his buddy Brer Bear at this point. For us, that was the 20 week appointment when we found out Sadie had heart issues, kidney issues and a cystic hygroma. We were just living life, expecting to receive a report on the gender of our baby and instead were told that our baby was very sick.

As Splash Mountain continues, you come to a quick little drop that takes your breath away before entering another scene that shows more of Brer Fox and Brer Bears gimmicks. We had our breath taken away when we discovered that Sadie had Turner's Syndrome and began to learn more about the health complications she had.

After this scene, you get to make the climb up to the big fall. As you are on the climb, your heart begins to race a little as you know what is following. But, at that point, no matter how scared you are, there is no getting off. You are stuck, for better or worse. And you just have to trust that Disney had  plan and this was part of it. That they had built a safe ride and that you will be okay after the drop. For us, this climb was the time leading to her birth. It was hard and scary at times. Sometimes we were not sure where the climb was taking us. We were not sure that the drop would be a safe one. We were nervous but knew that we had to trust in God, trust that He had a plan and that this was part of it. That we would be okay after the fall.

Well on Splash Mountain, after the climb you fall. The fall is fun and terrifying all at the same time, as you plummet 45 feet down right past the thorns. Then your log brings you to Brer Rabbit's Laughin' Place where he is safe and everything is good. Then you are taken back to the beginning where you get off and go join a new ride.

Unfortunately, I feel like we are stuck on the last three stages. We have a climb, fall and then happiness. Our climbs have been days before surgeries and big events, our falls are the surgeries and events and our happiness is the time in between where Sadie gets to be home with us.

Well my friends, we are on another climb. Sadie has been admitted into the hospital twice this week with a fever. Sunday night, we took her to the ER and were admitted to the CVICU. After running tests and finding nothing of concern, we were released Tuesday night. We fell and reached safety once again as we were allowed to go home.

Our next climb began as we were told she would most likely be having her second open heart surgery the following Wednesday. We knew that the surgery was coming soon but were shocked it would be that soon. Anxiously, I awaited a call telling me it was official. Well as we waited, the climb got even steeper. Thursday morning (two days after we had been released) Sadie developed another fever, but this one was higher than the last. So, we contacted our amazing cardiologist, Dr. Lacey (who I am so incredibly thankful for) and she got us a room in the CVICU. Once we arrived, we learned that we would not be having surgery next Wednesday (due to scheduling issues). We also learned that we would be staying until her surgery, whenever that is. So here we are.. stuck on the climb.

I must say that this climb has had "mini falls" as we have done testing and so far her blood and urine looks clean. This is great news, but also bad as we do not know what caused her fever. At this point, we are just hoping it was a viral infection.

Tuesday morning, the cardiologists, cv surgeons and our urologist (Dr. Barraza) will meet and discuss Sadie's case and hopefully come up with a plan.

Throughout this entire experience, I have been trusting God, but have also been trying to "manufacture my own miracles." Well, I have resolved that I will stop that.. I will let God do the manufacturing as His plans are far greater than mine.

Pray for wisdom for all involved in Sadie's care and peace for me as I am learning to sit back and trust. Pray for our family as this is all very stressful and is very hard on all of us. And pray for Zach as he is staying with Sadie tonight and they are currently trying to place an IV. At this point, they have tried three times unsuccessfully.. Pray long term that her veins rejuvenate as they are running out of access points.

As soon as I know more about Sadie's upcoming surgery, I will let you know.

If you ordered a Sadie shirt, thank you so much! We know we will definitely have them in time for the surgery as it has been postponed. Please post pictures of yourself wearing them so we can show Sadie all of the people who were praying for her and supporting her during her surgery!

Love you all,

Candace, Zach, Kinsley and Sadie

And so it begins again...

Today I received the call that would set up the first step towards Sadie's next heart surgery. Of course I have known all along that the day was coming again, but this makes it feel even more real. The anticipation and excitement remind me of the moments before cheerleading competitions in high school. I absolutely loved competing, but the moments before were always the worst. As I stood back behind the curtain waiting for our team to be called, I was incredibly nervous. My heart would beat fast, my hands would I shake and I would always have to pee. Of course, I know it was adrenaline and it was part of what would fuel me out on the floor, but it was a terrifying feeling. Once I was on the floor and the music started, my body knew what to do and I was once again at ease and having fun... but I just had to make it there. Well, that is the feeling I am experiencing now. I know that we must have surgeries to help Sadie be healthy, but I am terrified of the process that get's us there. I know, of course, that it is in God's hands and He has a plan- but I just wish I could fast forward through the whole surgery part. So, on to the update --

Next Friday, October 3rd, Sadie will have her second heart cath and her first TEE. They will use both of these tests to examine and measure her heart so that we can make the best possible decision for her second open heart surgery. They will need to put her under anesthesia to do the procedure, so that is scary, but the heart cath itself should be relatively easy. At this point, the plan is to do a two ventricle repair. Dr. Lacey and the other cardiologists all belive that her left ventricle and surrounding valves have grown enough so that she can have a "normal" functioning heart. Although it is a major surgery, it would mean we would not need to do the Norwood, Bi-directional Glenn and Fontan. After the cath, Sadie's cardiologists and surgeons will meet to discuss which direction they believe will be best for her, pray for wisdom in this decision!!!!

For now, I must give praises for how well Sadie is doing. It has been amazing seeing her grow and blossom. She loves kisses, tickles and her family. When Kinsley comes near her, her little face lights up in excitement. Our faces cringe in fear as we get nervous that she may trample her, but Kinsley is usually very sweet. She gives her hugs, kisses and even likes to "hold" her. Her hygroma has shrunk significantly, and I believe that is because of prayer and the fact that she is finally healthy. It has been wonderful to see her be happy for extended periods of time. For a while there, she was constantly in pain and it was so hard to see. As a parent. you feel hopeless seeing your child suffer and knowing there is nothing you can do to help them. I often think that must be how God feels when He sees us stray from His plan for our lives.

As far as feeding is concerned, Sadie still will not eat enough by mouth to sustain herself. Every Saturday, when we change her NG tube, we let her keep the tube out for two feeds to see if she will possibly decide to eat enough, but at this point she is only eating approximately half of what she needs. It is so frustrating as I just wish that I could convince her to eat, but unfortunately she does not understand. Once again, I know God must feel that frustration when we stray, yet we do not listen either. We have tried feeding her sweet potatoes, and she has done okay with it. The first time I tried giving her the spoon, she just batted it away and cried. So, I dipped her pacifier in the sweet potatoes and let her suck it off. Then after multiple times, I was able to switch it to the spoon. I am not sure how much ended up in her belly and how much ended up everywhere else, but it is a start.

From a urological standpoint, we have had multiple appointments and Dr. Baraza is confident that we are doing good for the time being. We will have to have major reconstruction surgery, but we will wait until approximately six weeks after her heart surgery. The new medication she is on is working at this point to keep away infections so we are thankful and still praying that she will not become immune to it.

Verses:

Ephesians 4:17-24

17 With the Lord’s authority I say this: Live no longer as the Gentiles do, for they are hopelessly confused. 18 Their minds are full of darkness; they wander far from the life God gives because they have closed their minds and hardened their hearts against him. 19 They have no sense of shame. They live for lustful pleasure and eagerly practice every kind of impurity.

20 But that isn’t what you learned about Christ. 21 Since you have heard about Jesus and have learned the truth that comes from him, 22 throw off your old sinful nature and your former way of life, which is corrupted by lust and deception. 23 Instead, let the Spirit renew your thoughts and attitudes. 24 Put on your new nature, created to be like God—truly righteous and holy.

These verses remind me that I should not stray, I should trust and follow His plan for my life. I am no longer in the dark, I am a child of His light and as so, I should act like it! He knows what is best for me and therefore I must do my best to trust Him and follow His plans for my life. Please help me accomplish this by letting me know if my sinful nature is showing.

Prayer Requests:

1. Wisdom for Sadie's doctors as they make decisions in the near future

2. Continued protection from infection

3. Wisdom as we decide what path to take with her hygroma