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!