New Beginnings

Tonight my sweet husband posted a beautiful family photo of us to commemorate the ending of 2018. As I looked at it, I couldn’t help but smile and think about what it meant to me. It’s a photo of Ryan and I holding hands walking toward the sun with Harrison in tow. We are smiling and excited about the future ahead. When we took that photo, I had no idea the darkness that would lie ahead of us. I had no idea the unexplainable pain I would experience and the new found strength I would need to make it through each minute of each day. I had no idea how 2018 would end.

As I sit by Mom’s bed tonight and listen to the fireworks going off outside the window behind me, I can’t help but think about that photo and what is represents to me tonight. A bright future. Our family...walking toward new beginnings and happy endings. Leaving the darkness behind and seeing a glimmer of light while standing in a very dark tunnel. There will be a day again where we are all home, smiling, loving on each other and looking forward to new memories being made together as a family. We will look back on this time and not be sad but it will be a huge reminder of Jesus and what He can do in the lives of those that are faithful to Him. We will be grateful and the pain that we feel tonight will be a distant memory. I can’t wait for that day and I am so excited that this new year holds it for us.

Today Mom spiked another fever and we found out that she has a staph infection where the arterial line was removed a few days ago. We are encouraged that they found the source of the infection and that the infectious disease doctors are able to treat it specifically with the right antibiotic. Please pray that this infection clears up fast. She is struggling again with high heart rate and we believe this is the cause of it.

This evening she wanted to tell all the kids about her leg. She wanted them to hear from her what happened and that it was going to be ok. Y’all, she’s amazing. Her strength never ceases to amaze me. I cried through the whole thing and was so proud that she is my Mom. She loves her kids and all the nieces and nephews so much. She didn’t want them to be scared. Even in her darkest days she’s putting her kids first. I’ll say it again, she is amazing and I hope to one day be half the Mom she is.

Please continue to fiercely pray for our family through this coming year. It will be filled with lots of new beginnings and lots of new challenges. It will be a new way of living for every single one of us. Things will never be the same and we’ve all begun to accept that and be ok with it. We have so many hills to climb but so many things to look forward to. Mom coming home is one day I can’t wait for. In February our sweet Harrison turns 1 and in April we get to meet our precious baby girl, Eleanor. Recently, we have all talked about how excited we are for next Christmas. Yes, we know it’s only January, but we all are looking forward to how special next Christmas will be. I’m most excited that Mom will be here with us for all of these milestones. Today could be so different and even though I’m more tired than I’ve ever been, I’m just so thankful. Thankful that the future is bright and full of memories to be made. Thankful that the Lord is SO faithful and that He’s continuing to bless our family.

Tonight, 2018 ends and we say goodbye to the struggles we have faced during it. Tonight, we celebrate because Mom’s story doesn’t end in defeat but in victory. She is promised good by the Lord and we know that His plan is what is perfect for her. We are comforted to know she is being carried by Him and that he decides her story not any doctor or nurse. He’s never failed our family and we know for sure that He’s not about to now. Happy New Year! We pray your 2019 is full of blessings and miracles. We love you all so much.

Strength

Recently, my biggest prayer has been for strength. Strength for Mom...strength for me...strength for our family. Some days I wake up and feel like I didn't even sleep. We all sleep with our phone next to our head and wake up multiple times a night checking it. It's exhausting. I can't even imagine the exhaustion Mom is experiencing.

Exhaustion is a perfect word to describe today. Mom had a rough night last night dealing with pain and nausea. Those same symptoms carried into most of the day. Please pray specifically for her stomach and that it will "wake up" and allow her to tolerate feeds. The doctors really want to start tube feedings but her stomach just isn't ready for it yet.

Today, one of our biggest concerns is her left hand. She has two spots of concern, two of her finger tips and her wrist. When her body threw blood clots, her hand was severely damaged. It has gotten so much better, but has a long way to go. Please pray that the tissue that is damaged will heal and not continue to die. Pray that infection stays away from it and that we won't have to discuss an amputation. I'm not sure my Mom would survive that. It would just destroy her to lose anything more.

Sometimes my thoughts get the best of me. Today the anxiety and thoughts of the days ahead were almost more than I could handle. When I was thinking about Mom's hand and the decisions that could possibly lie ahead of us, I reminded myself of how far we've come. Three weeks ago, we were told Mom probably wouldn't make it off the operating table. She was completely unresponsive and was unrecognizable. Today, Mom looks like herself, her vitals are stable, and she's certainly alert and responsive (one thing she hasn't lost is her attitude.) Mom has exceeded the expectations of so many and I know it's only because of the strength the Lord has given her. She's a fighter and has to continue to fight to get passed this. A few weeks ago I read a statement that really stuck with me. It read, "Just like the sun follows the rain, strength follows pain." Tonight my prayer is that strength will continue to follow the pain and that our whole family will be drenched in an overwhelming amount of strength. We certainly need it for the days ahead.

We cannot say enough good things about Mom's care team in the Surgical ICU. Tonight, as Ryan & I sat in the waiting room during shift change, one of Mom's nurses who was there when things were not looking good walked past. He saw us and came over and sat for almost an hour talking about Mom, how far she's come, and what lies ahead. The other night while mom was having an anxiety attack but needing an adjustment on her NG tube, she wouldn't let anyone else do it except this nurse. He calmed her down, finished the procedure and stayed in the room to make sure all was well. We are so thankful for the compassionate care he and everyone on Mom's care team has shown our family.

We love you all and are blessed by each one of you following our story.

Faith of a Mustard Seed

Tonight was special. Our out of town family, the Castles, came in to see Mom. Mom's face lit up when she saw her sister, Kes. It was so sweet. We all took turns in the room with her and I think she enjoyed the visit.

Mom seemed to be a little better tonight. For the last few days, she has struggled with high heart rate. Her heart rate has ranged from the 130s to 150s all day and night. Today it has been a little lower and we are hoping this is a sign that it is finally settling. The surgeon was able to take out Mom's second chest tube today. This is another small step in the right direction. We are rejoicing in baby steps these days.

I shared with you all in the last update that Mom was struggling with anxiety and understanding all that she has been through. This has made visits and time with her difficult to say the least. Mom is also still at a great risk for infection. Because of all this, her doctors have advised us to closely regulate visitors. We love that we have so many friends and family supporting us and wanting to be there for Mom. If you would like to visit, please reach out to me or someone in our family to schedule a good time to come by. We want to make sure not to overwhelm Mom with unexpected guests and it's better if we are able to prepare her in advance. Communication for her remains very difficult. She still has so many questions and gets so frustrated when we aren't able to understand what she's mouthing. She is also so self-conscious about all she has gone through and sometimes even family makes her uncomfortable. We want to make sure, if you make the drive down here, you are able to see Mom when she is actually up for a visit.

Tomorrow, the doctors are hoping to start some nutrition through her feeding tube. Mom is so weak and it seems like each day that goes by, she is getting weaker. Prayerfully, the nutrition will help her gain some of her strength back so she can start building her muscles back up. It takes so much effort for her to just wiggle her toes right now and she doesn't move her arms. We will all be encouraged when we see her strong enough to lift her arms. Please pray for strength for her body as well as her mind.

When I went to tell Mom goodnight tonight, I learned in to kiss her and she smiled at me and told me I was so pretty. Y'all, it did my heart so good to see that smile and read those words off her lips. Moments are hard for Mom these days. Each hour is harder than the one before and we see her upset all the time. We hold on to every sweet moment we get with her.

Throughout this whole journey there have been so many moments where all we had to lean on was our faith. I'm not going to lie, there have also been moments when our faith seemed small or nonexistent. It's hard to have faith sometimes when you feel like your world is crashing down around you. Tonight, my sweet Aunt Kes gave us a gift to remind us all that no matter how much faith you have, it's enough. We all received a necklace that holds a mustard seed. She read to us a devotion that meant so much to me and I want to share part of it with you.

"Faith, even in its minimalist form is about trusting God as 'Almighty.' It means that there is nowhere God is absent, powerless, or irrevelevent; no situation in the universe in which God is at a loss. To have faith means to trust God, have confidence in God, take refuge in God, the God who has made everything and…has made visible for us the sort of God He is and the sort of purpose He has in the life and death and resurrection of Jesus. Jesus says that faith the size of a mustard seed is more powerful than all the mountains that we face."

It's so true. Our faith in Jesus, no matter how small, is more powerful than anything else in this world. I hope that no matter what you are going through, you never lose your faith. There will be times in our life that it's all we have and it will be what brings you through your battle. I can say with certainty that it's the only thing carrying us through this journey. We are blessed to have a God that loves us and protects us like Jesus does. He's so good and has been SO faithful to my family.

Merry Christmas!

Christmas Day. I'm not going to try and sugar coat things...today was rough. I wanted to pretend like it wasn't Christmas. I just wanted it to be another day, but I have a 10 month old and a 12 year old little sister so today was unavoidable. We spent the day at the hospital with Mom and did our best to enjoy it.

Mom was very down today. Every time someone would tell her "Merry Christmas" she would start to cry. It was sad and we did our best to encourage her. In the ICU, they have a rule that children are not allowed in patient rooms. These patients are the sickest of sick and it’s not a place for kids. Today, they made an exception though. They allowed us to bring Harrison back to see Mom and it was a special moment that left us all in tears. She was happy to see him and he was happy to see his sweet Lollie. He brought her a Christmas gift and she was able to kiss him on the cheek. It did my heart so good and I was thankful for the moment.

He's smiling because kisses from his Lollie are his favorite. 

We were encouraged to find out this morning that they finally found the source of the high WBC and fever. Mom has pneumonia in her right lung. The infectious disease doctors have changed her antibiotics and she has now been 24 hours fever free. Praise the Lord.

Mom seems to be holding steady. Our biggest battle right now is high heart rate from anxiety. Mom's body has been through so much and now her mind is trying to catch up with what is going on. 24/7 there are doctors and nurses checking her, talking over her, and changing her treatment plan. It’s extremely stressful for us and we aren't the patient. Please pray for that. Pray that the Lord will remove any anxiety or worries that she has. She is still in critical condition and she knows that. I can't even imagine how scary it is for her.

SO many people have blessed our family recently. I couldn't even make a list if I wanted to. We are so thankful for each and every one of you. From the prayers, to the food, to donations and hugs...we are so thankful. This Christmas was made special because of sweet friends and family who went out of their way to provide food and gifts. We will never be able to repay you all. We all hope you had the Merriest Christmas and got to spend it hugging your loved ones tight. We aren't promised tomorrow and holidays like today should be cherished. The Lord is so good and we are so thankful this Christmas for the birth of His son.

Merry Christmas!

Harrison loved the Gumbo!

Christmas Lunch

The rest of the gang!

Sophie and her favorite nurse Rose. 

Through the Fire

Friday was a hard day. Mom found out about her leg and we spent the day recapping what happened and encouraging her. It broke my heart to see her so upset. She still can't talk to us, but now that they have the Trach in and the ventilator out, she's able to mouth to us. She kept saying "I am just so sad." We all cried and told her that we were going to get through this together. It will be hard but we WILL get through this.

Mom's spirits were lifted yesterday when her sweet friend, Lana Martin, came to visit her. Mrs. Lana has been a friend of Mom's since they were kids. She is precious and their relationship is more like sisters than friends. Mom's eyes lit up when she saw Lana and she told her over and over how much she loved her. Mrs. Lana has been hanging out at the hospital from the beginning but this was the first time Mom was alert enough to realize she was here. It was a special moment and one that left us all in tears. We are all just so thankful that we still get to have these moments. I am so thankful for the friend Lana is to Mom. She is a jewel.

The fever Mom was having has still been coming and going. They are able to control it with Tylenol, but there is still concern of infection. The new blood cultures have been negative for bacteria, but her white blood count has remained elevated. She has also struggled with high heart rate which keeps her from sleeping. They believe this is related to the fever. Last night was rough and she didn't get much sleep. Please pray that they can find the source of the infection today and knock that out.

The vascular surgeons came in and checked out her left arm again. Back when she was throwing blood clots her left arm was severely damaged. It has been a watching and waiting game as to whether it will make a full recovery. For many days, they couldn't find a pulse in it. This was extremely discouraging to us because it was a huge sign that it would later need to be amputated as well. Last week one day they were able to find a strong pulse and since then the pulse has been present. Today the vascular surgeon felt like it looked good and there only concern was the tip of one of her fingers. Please continue to pray for that arm and her fingers.

This journey is a war filled with many battles. Everyday is a new battle to win in order to eventually win the war. It is extremely stressful and each day is more exhausting than the one before. There are so many things to worry about and so many more hills to climb in order to get Mom home and stable. It's taking a toll on all of us. Our family has been through so many battles, but this one is by far the hardest. We are tired, but know the Lord is going to continue to carry us through. The devil won't win. He keeps trying, but he won't.

Since Mom has been sick, one song that has carried us through this journey is, "Through the Fire" by the Crabb Family. It's an old song but one of Mom's favorites. If you haven't heard it you should look it up. I don't sing, but Grannie and I have sung this to Mom multiple times throughout her battle with heart failure. The song talks about how we aren't promised that life will be easy, but we ARE promised that when it gets hard our God will show up and take us through the fire again. Today, we are still singing that song. The Lord always shows up. He always carries us and loves us through every moment in our lives. I have no doubt that our God is present here in this hospital room today
and He is taking us through the fire again.

Sophie made wreaths for every room on the ICU
floor. 33 wreaths total. The nurses and doctors
love Them. Mom's is extra special!

Sophie's Christmas tree for Mom's room.

Dr. Hahn is an angel. She is one of Dr. Bansal's residents and
someone we have gotten so close with. She left for a few days
to go home for Christmas, but left us with this card and some homemade treats.
She is a huge blessing to us. 

A Thrill of Hope

Tonight, I was able to see Mom for the first time in 2 days. I went home late Monday night to be with Harrison for a few days and get a change of clothes. Y'all, she looks so good. She is still ventilated and on some sedation off and on, but she's looking more and more like Mom.

She was awake and we were able to talk to her and give her an update on all that's going on at home.  I showed her some pictures of Harrison and she smiled and nodded her head. It was so good to see her sweet smile. She wants to communicate with us so bad. She tries to mouth things over the ventilator, but it's so hard to figure out what she's saying. We know this is frustrating for her so we do our best to try and ask simple yes or no questions.

Tomorrow morning they will be putting Mom's trach in around 9 AM. Please pray specifically for an easy procedure for her. Our hope is that this will make her more comfortable and speed up her recovery.

Yesterday, Mom developed a fever and after some blood cultures, they discovered a bacteria in her blood. They brought in an infectious disease specialist and have started her on some strong antibiotics. Her fever seemed to come and go today, so we are praying that is a sign that the antibiotics are working. Another specific prayer request we have is for her left arm. When her body started throwing clots, the muscles were damaged. Please pray that it will continue to get stronger and that there will be no permanent damage to it.

Overall, Mom is still slowly moving in the right direction. Her vitals are stable and her blood work is still trending the right way. We still have a very long road ahead of us and when I think about it, I get overwhelmed.

This morning my Aunt Kes sent us a picture of a Christmas ornament that said "A thrill of hope...the weary world rejoices." How timely. This Christmas season, we are clinging to that thrill of hope.

Keep the prayers coming,

Addie

She's One Tough Cookie

When my mom was diagnosed with heart failure six years ago, we never expected this is where the journey would take us. We were devastated, of course, but wouldn’t have ever imagined the devastation it would bring. Somehow though, tonight, as I sit by her bedside in ICU at Ochsner in New Orleans, I can’t help but feel thankful.

This most recent chapter in our story began on Dec. 4th. Mom was admitted to Ochsner in preparation for surgery that would take place on Dec. 6th to place a Left Ventricular Assistance Device (LVAD) that would help her heart function until she could receive a complete transplant.

The morning of her surgery, our entire family gathered by her bedside. Her surgery that was supposed to begin at 8 a.m. would be delayed until the afternoon due to an emergency surgery for another patient. While we waited we laughed, talked, she kissed Harrison and we all prayed for a smooth procedure. After lunch we moved to a waiting room on the third floor and as minutes turned to hours we anxiously awaited word from her surgeon, Dr. Aditya Bansal, that the surgery was complete. He came out around 6 p.m. He was smiling and said the procedure could not have gone better. He instructed us to thank the Lord for that blessing and to get dinner before we were able to see her in ICU later that evening.

Dr. Bansal is one of the top 5 surgeons in his field. He's performed more LVAD surgeries than 99% of similar surgeons ever will. Most importantly: he's a Christian. We knew Mom was in the absolute best of hands with him and his team.

The next morning, Dr. Bansal and his team took Mom back to the operating room for the routine procedure of "closing her chest." In the hours after this surgery they leave your chest "open" to monitor the pump and watch for bleeding. The closing procedure also went off without a hitch. We spent Friday afternoon sitting in her room talking and planning her speedy recovery. Things had gone so smoothly that when the hotel connected to the hospital did not have any rooms for us to book Friday night, we all decided it was safe to go back to Baton Rouge. We left my dad there with Mom and caravanned back to Central. Once home around 11 p.m., we left our bags packed and went straight to sleep. Harrison was glad to be back in his bed.

The next morning, around 5 a.m., Dad called me to let me know that Mom's lab work had begun to "trend in the wrong direction." Little did we know, this was a phrase we would begin to hear with more frequency in the coming days. By 7 a.m., Grannie, Pops, Claire and myself were headed back to New Orleans as they planned to take mom into surgery to examine her LVAD and her abdomen for signs of complications. She was in surgery from about 7 a.m. until about 3:30 p.m. and Dr. Bansal ended up replacing her LVAD with a new one due to a blood clot in the pump.

Mom was sent back to ICU to recover. More of our family had arrived by now and we all sat out in the waiting room having no idea the terrible direction things were about to go.

Dr. Bansal sent a nurse to urgently come get Pops, Dad and me. As we walked down the hall, I knew something wasn't right. When we walked into moms room, it was full of doctors and nurses. Machines were beeping, doctors were calling out orders and Dr. Bansal asked us to take a seat on the couch. He went on to tell us that Mom was experiencing severe complications. Her body had begun "throwing blood clots to her limbs and organs." I'll never forget hearing him tell us "there's nothing we can do. It's time to say goodbye." He showed us her left arm and leg...they were black. With tears streaming down our faces, we cried out to the Lord for healing and to protect Mom. We had church in that ICU room. I couldn’t even tell you who was there. I laid hands on Mom and screamed “Jesus heal her. Take this sickness away. Devil you aren’t welcome here. I command you to leave in Jesus Name.” Mom's heart was out of rhythm and I could hear the nurses preparing the crash cart in order to attempt to resuscitate her once her heart inevitably gave out. It was awful and a day that has forever changed me.

Dr.  Bansal pulled Pops, my grandfather who is also a physician, into the hallway. He told him that the only option they had was to immediately amputate mom's left arm and leg. Even then, Dr. Bansal said it likely would not work and she would likely die on the operating room table. He told Pops the decision to proceed with surgery had to be made...quick. We all decided that we had to give mom a chance to fight. We told Dr. Bansal to do what needed to be done. As we returned to the ICU room, we were amazed to find the color returning to her limbs and her heart rate slowing and falling back into rhythm. The doctors and nurses could not explain the sudden change. The muscle in her leg was already severely damaged and her arm had suffered damage as well. Dr. Bansal still had to take her to the OR but now the focus was on trying to save her left leg. He told us as he left that she was still in critical condition and may not survive a surgery to attempt to save her leg. Though it was the only hope we had.

After several more agonizing hours of sitting, praying and crying, Dr. Bansal walked out and over to our group. She survived. The chief of vascular surgery had performed a double fasciotomy to relieve pressure from her muscles in her left leg that were constricting blood flow. She was headed back to ICU to recover from her 6th surgery.

As we all returned to our hotel rooms that night, I'll never forget the feeling of devastation and fear. The doctors had made it clear that this might not fix the problem and Mom was still very critical. I knew deep down that this wasn’t the end of complications and the road ahead of us was long.

At 4 a.m. that next morning (Dec. 9th), I got a devasting call. Mom's CPK number (a number that measures dying tissue) had risen significantly over night. Her leg was still dying and they were taking her back into surgery to perform an above-knee amputation. I felt like someone had ripped my heart out. We all rushed back to the waiting room to wait and again pray that this would save her. Yet again, we were told it was our only option and it still might not fix our problem.

So here we were, back in the dreaded second floor waiting room. Waiting, praying, and begging God to not let this be the end of Mom’s story. I was so tired, I could barely hold my head up. I was mad. I couldn’t believe this was happening. How in the world am I going to tell my Mom what had happened? Devastation doesn’t even begin to explain the emotions we all were experiencing.

Hours later, the vascular surgeon came out to let us know that mom was alive and the surgery was complete. He was unsure if this would fix the problem but did assure us that her leg was past the point of saving. If this was the problem, the CPK number would slowly lower over the next 48-72 hours and those next hours would be critical. For the rest of that day, we prayed over Mom and spent the day thanking God for another day with with her.

That next morning (Dec 10th) Mom’s CPK value was still rising. It was clear to us that this was probably the end. Dr Bansal flat told us again “There’s nothing else I can do.” She was in liver failure, kidney failure, her arm was still showing signs of dying, and so many other things were going wrong in her exhausted body. He told us we should keep her comfortable and discuss end of life plans. He handed us a DNR and told us we should decide what her wishes would be. I stood in that hospital room and yelled at Dr Bansal. I told him I wasn’t giving up on her and he shouldn’t either. He looked at me with tears in his eyes and said, “If I was going to give up on your mom, I would have days ago. I’ve spent 26+ hours in surgery with her and I’ve canceled 2 conferences to be sure I was here with you all.” I knew he was right, but my heart just couldn’t accept it. I wept over her bed and begged God for more time. How was I supposed to have my baby girl without my Mom there with me? The pain was unimaginable. Dr. Bansal also suggested we bring my little sister, Sophie, in to see her mom and say goodbye. I'll never forget the look of hopelessness on her little face...

We called friends and family from out of town and let them know they should come now. So many precious people were there for me that day and it’s something I will never forget. The hospital brought in a child life specialist to talk with Sophie. It was just horrible y’all. I can’t even put it into words.

That day I learned, that as a Christian, we sometimes have to be ok with the Lord’s will. That is such
 a hard thing to do. For the first time, I prayed for His will. I didn’t know if that would be a life with Mom or a life without. My world was crumbling around me and all I had left was the hope of the Lord’s will.

As that awful day went on, Mom’s lab levels slowly started to improve and by that next morning (Dec 11th) they were much better. Although we weren’t anywhere near out of the woods, we were finally moving in the right direction. Yet again, the Lord proved the doctors wrong.

Wednesday morning (Dec 12th) we were awoken by a call that Dr. Bansal decided she was stable enough to close her chest. Praise the Lord! This was a big step in the right direction. We were so blessed by this call and the good news.

Everyday since then has been a rollercoaster. We watch every lab result closely and pray constantly that we won’t have anymore setbacks. This last Sunday, they exubated Mom and woke her. She did well for a good 36 hours and we enjoyed getting to communicate with her some. By Monday afternoon they decided that we would have to put the ventilator tubes back in because breathing unassisted had become too much work for her. She needs rest. She’s been through so much and her body needs to recover. The hope is that Friday they will put in a Trach. This will help get her breathing on her own and make the transition easier. This will not be a permanent thing just something to help her recover.

Mom still has such a long road ahead of her. At times it seems impossible. We have struggled with the overwhelming road that is ahead and are constantly praying that God will give us the strength to make it through every hour and every day. We still have many hills to climb and corners to turn, but I have no doubt that the Lord will continue to carry us through each moment.

One moment we need specific prayer for is when we have to tell Mom about her leg. She’s still very unaware of all that has happened. Please pray that the Lord will prepare her heart for this news. I know my Mom well. She’s going to be devastated, but she’s also the strongest person I know. If anyone can take this news and overcome it, she can. Please pray for that.

Please continue to pray for all of us and that Mom has no more setbacks. There isn’t much more she can handle. I will do my best to keep this blog updated as we continue on this journey. My mom is One Tough Cookie and I have no doubt that she will overcome this battle. We love you all.