If You Listen Close

If you listen close you can hear my mind think of you
You can hear my heart beat for you
You can hear the tears hit the floor for you
You can hear my body go weak for you
You can hear my hand reach out for you
You can hear my heart break when I think about how I lost you
Most of all even when it is noisy, you can hear my love for you.

There isn't a moment I don't think about her. There isn't a moment I don't miss her. It isn't always hard, but it is never going to be easy. I will never stop hurting for losing all that I had, but I will learn how to be strong. I will always love my baby. I do not have one child. I have four children. No matter how they got here, no matter when they leave this world. Each one of them holds a piece of my heart, and without them there is an empty space that cannot be filled. It's okay to be sad, it is ok to miss her. I won't give up, not only because my family needs me, but because she fought so hard to stay here with us. If I give up I am not honoring her life.

An unexpected turn.

I will begin this blog by letting you all know, even though I lived through this and it was the most difficult time of my life, it is almost equally difficult to write about. I want everyone to know that this blog is personal, and there are details I won't be sharing in order to keep some moments close to my family's hearts as well as mine. With that being said I also want to finish her story. This is not just a story of a beautiful little girl. This is my therapy, remembering her is important, but trying to let go of the end has been the hardest thing I have ever had to do.

As summer drew to an end, and big sister had been in school for just over a month we were really getting used to our new routine. Little did I know that routine was going to take the biggest turn, and I never could have imagined how my life would change. The day started just as every day had. I had a happy little girl at home with me, and we even took a little trip to run errands. Not an issue in sight. I hooked her up to dialysis at her normal time, and hung out with the family as she slept. Then it began. I knew something was off I just didn't know what. Morgan loved her sleep, and she kept waking up crying. After diaper changes and watching to see if the output from her dialysis was clear or cloudy I began checking other symptoms. I took her temperature and it was up. Even though I was worried I started with Tylenol hoping it was just teething. Her temperature went back down, but she still wasn't sleeping well. I could not sleep. I checked her again, and her temperature had spiked again. I gave her more Tylenol and immediately called the Doctor. We were advised to head to the Emergency Room. Without hesitation we loaded everyone up and went on our way. Through it all Morgan smiled the entire way.

After some time in the ER, I.V.'s being placed, and multiple labs being drawn she was taken to the Children's Hospital two hours away. Big sister and I stopped at home for a nap and to pick up some clothes and necessities, and met Randy and Morgan at the hospital later. After a blood transfusion and some rest she began to feel a bit better. It was a relief. Tests came back positive for Rhino/Enterovirus. Most often this virus has the same symptoms as a cough, but can be very tough on young children. Especially children with weakened immune systems and health issues. Morgan was a fighter. She was in and out of the PICU in no time and onto the Pediatric floor. After a few days she was fever free and ready to go home.

We came home on a Friday and it was wonderful to be home again. We were amazed at how short her stay was. Throughout the day on Saturday Morgan and I hung out and rested. Neither of us were feeling 100%, but I still had my smiling little baby. Early afternoon her fever started to rise again. I stayed on top of it with Tylenol and it was doing the job. At that time I felt her body was just doing its job to fight off the virus. When it was time to set her up on dialysis her fever spiked a bit higher. I again called the doctor. With some guidelines to watch closely we carried on with our evening, and I was again unable to sleep. After keeping a close eye on her and her fever not breaking I knew we needed to head back to the hospital. This time we had all the kids with us. We loaded up again and headed that way.

When we arrived we were tired, but everyone was concerned for Morgan. We got to the E.R. in just under two hours, and they prepared her for admission. After testing she still only had the same virus. We just knew that her condition was making it more difficult to shake this virus. After just a few days she began to improve. She was our happy sweet Morgan again. No fever, and doing wonderful! We played, we relaxed, and we snuggled.

Then Morgan did something I feared. She pulled her g-tube right out of her stomach. Still smiling and happy when I arrived we waited. When she pulled it out it irritated the sight, and caused a small infection on her skin. As the it cleared up a new g-tube was placed and we were heading on the right track. Then she began spiking fevers again. Once again the testing began. This time she tested positive for Rotavirus. A new battle began. She seemed to be handling everything fine. To give big sister a break from the room I took her to the Aquarium and we went back and spent some time with Morgan and went to bed. The next day we stayed most of the day and later into the night with Morgan. When we left she was all smiles and seemed to be recovering well.

The next morning when we woke up we received a call saying they were going to place a central line because she had lost fluid through the night and needed a more reliable I.V. This was very routine to all of us. Sister and I got ready, and as we headed over I received another phone call from the hospital. Morgan was not doing well. We rushed in and Child Life was there to take big sister. As I walked back to PICU I broke down. When the doors were opened I saw what seemed like 50 medical staff standing in and outside of her room. I felt like I was going to be sick. I felt like I was going to pass out. I saw my baby laying on the bed and I couldn't believe my eyes. They were breathing for her, and this was an emergency. The doctor walked to me and told me what was going on. I couldn't hardly hear or focus, but I tried my best. My husband was at work and was on his way as soon as he got the news, but I was scared. I cried and had to step away for a moment.

I couldn't stand to step away from her, but I couldn't hold it together either. I was so scared, but I knew I had to pull it together. I knew that she needed me, and this was not the time for me to lose it. The doctor told me it was not looking good. Those words were like a knife in my heart. I never imagined being in that moment. When I walked in and took her hand everyone around me disappeared. She was all I could see and feel. I held her hand and told her I was with her. I told her I loved her and how proud of her I was because she is so strong and she can do this. I let her know her daddy was on his way, and she can do this.

Time was standing still. I entered the hospital that morning and before I knew it, it was afternoon. Randy had arrived and we were waiting on his parents and my parents as well. We sat with her, and people came in to visit and show her and us their love and support. When everything was calm big sister came back in. She talked to her and loved on her. Just as she always did. I remember Randy and I watching her with her eyes open and her trying so hard to look at us. We knew this wasn't looking good. We stayed all night, taking turns sleeping. All of her sisters and grandparents had come to see her as well as her aunt and nurses and medical staff who cared so much for her. Just before lunch everyone left the room, and Randy and I stayed with her.

The room was silent and peaceful. That morning her heart rate was fluctuating up and down. Randy and I knew this could happen. The doctor told us if her heart went down again it would just be torture to continue to bring her back. She had 3 horrible infections in her blood and they had done all they could to get her through it. When her rate dropped below 100 Randy and I stood by her side. We cried, and kissed her. We held her hand and told her how much we love her and how amazing she is. We told her how proud we are. We both knew this was it and even though inside I was screaming to bring her back, I knew I couldn't do that to her. She was gone. We picked her up and held her unlike we have ever been able to before. We weren't hurting her. No more pokes, no more dialysis, no more pain. She was at peace, and she slipped away peacefully.

Morgan changed our lives. She is our drive to be better people. She is our hearts. She touched so many lives, and she fought a hard fight. I wouldn't take a moment of our year with her back. I would do it all again. I hope her story can continue to change lives. I hope her fight can encourage other families to keep fighting. ARPKD does not always have such an early end to life. There are survivors. Every path is different. Morgan's path was short, but it covered a lot of ground. I wish so much I could have her again, but I don't wish her back to her pain. Thank you all for not only reading our story, but for being a part of it. This is Morgan's story and while our stories continue so does hers. She continues to make an impact in this life.

Doctor's appointments and Visitors

Throughout June and July we were busy, busy. Morgan was doing very well, but if it wasn't one thing it was another. We battled with her sodium levels for a long time, but once we got that under control her calcium dropped to a scary level. We were almost admitted again, but luckily we were able to get it back under control at home. Every week until the middle of July we had weekly doctor's appointments with both of her nephrologists. This required her to ride two hours back and forth once a week. The more time went on the better I was able to prepare, and that made her trips a lot more comfortable. Finally her appointments slowed down, and it couldn't have come at a better time.

We had a happy and smiling little girl that enjoyed playing and spending time with her sisters and family. With big sister's birthday approaching, came a visit from my sister and her family. This was their first time meeting Miss Moonpie. She was doted on the entire time. We didn't get the chance to travel much with her, but she got plenty of attention. We were all so happy to have visitors that gave us a little bit of normalcy back into our lives. They were able to stay for a week and at the end of the week they took big sister back with them for a visit.

This made for an entirely new week for Morgan and me. During the day Randy would go to work and Morgan and I were able to stay at home alone together. I've always made time to bond and love on Morgan. Her situation was unique. We didn't get to hold her for a week and a half after her birth. We couldn't do skin to skin until she was off her ventilator. Even though I missed her big sister so much, I knew she was having fun, and I embraced the opportunity to have more time to snuggle and play with Morgan. I also knew that this was a taste of what it would be like when big sister started Kindergarten in August.

When the week was up we prepared for more visitors and big sister back home with us. Morgan got to meet my brother and his family. They took a trip to get her labs drawn with us. Every family member got small dose of what life was like in our house, and we were busy and on a very strict schedule. They had a very short stay, but we packed in as much fun as we could with them. When the weekend was over it was time to get back to business.

Morgan had more doctor appointments ahead of her, but she also had plenty of fun as well. She was advancing physically and her big personality was beginning to shine through. She was more than all smiles. She was learning how play games back and forth with us, and she loved picking on us. Not only did her fun side come out, but we got a taste of her temper. Morgan didn't pee at all, but she had no issue with the #2 in her diaper. There were many times we would have to change her in the middle of the night. When we would wake her up to clean her up she would glare at us and stomp her foot in anger. It was the cutest little tantrum I had ever experienced. I could really see a difference in her. We were learning who our little Morgan was and she was beautiful.

She loved each of us, but the bond she had with her sisters was something special. Each of them made her so happy. When it was just her and big sister she would just let everything happen. If big sister was getting in her face, tickling her, or just being a turd Morgan was just fine with it. There were only a few times I ever saw Morgan cry because her sister was just getting too crazy. The bond between the two was heartwarming. Big sister was her protector as well as her best friend. I couldn't pick out just one thing that I miss the most about Morgan, but her relationship with her sisters was something I cherished so much!

Just when you think you get the hang of something

After Morgan was discharged from the hospital on dialysis summer was right around the corner. In early June I had planned to attend a wedding with big sister for my cousin back home. The trip was planned. I spent June 4th doing laundry and preparing Morgan's Nan to watch her while I was gone and Randy was at work. As the day went on I noticed Morgan getting increasingly fussy. She seemed like she was not feeling well at all. I laid her in bed thinking maybe she just needed a little Tylenol and a nap. It calmed her a bit, but I noticed her breathing was labored and something seemed off. I checked her blood pressure and heart rate and realized I was right. Her heart rate was at just over 200 bpm. I called the Doctor's office right away. They had me drain her and her fluid came out cloudy. I knew that this meant infection. At that moment I started packing us up to head to the Hospital. I called Randy at work and told him we were heading that way. I remember feeling so bad for her. She looked like she was in pain. Her heart rate and breathing were very concerning, but nothing as concerning as the infection I knew was in her peritoneal cavity, and possibly in her blood.

When we arrived we were immediately sent back in the emergency room and antibiotics were started right away. Arrangements were made to have her admitted onto the floor in the pediatric unit, and some of the fear began to subside. They attacked the infection from every angle and were able to get it under control. After a couple of days Morgan was back to her normal self, smiling, happy, and wiggling all about.

We were able to be home with her for nearly two months before the infection set in. As a caregiver I felt so responsible. I wanted to know if there was something I was doing wrong to cause this infection. I had a routine, and I never waivered from it. I couldn't even come up with a single thing I had done differently with her dialysis. Her amazing doctors were able to calm my fears a bit after discussing exactly the steps I took that morning and every day. They informed me that even when doing everything right and without change bacteria can still find its way in. One thing I knew for certain was that I would make sure to be extra cautious in her cares and exchanges. Watching her in such pain was something I just could not risk putting her through again.


Learning Dialysis was more than just training. Keeping everything as clean as possible and consistent was very important to her health. After a short time in the hospital we were sent home on antibiotics. Even though I had been trained to insert her antibiotics into her dialysis this was my first time actually putting this training into action. Each cassette that connected to Morgan and her bags had a medicine port that antibiotics and other dialysis related medication could be administered through with a needle. I had to do this for a couple days to finish her cycle of antibiotics. I was so happy all went well.

Upon arriving at home Morgan was welcomed by her Grandma and Papa, who came to visit her for the first time since her second surgery. We got to spend time shopping and playing and just enjoying each other's company. As a family we had a busy and exciting summer ahead of us. Filled with plenty of visits from Aunts, Uncles, and cousins. All I could do was hope that everything would carry on smoothly and Morgan could not only meet everyone, but also enjoy their company.

Recovery and Dialysis

On February 23, 2015 Morgan went in for surgery to have her right kidney removed and her dialysis catheters placed. She went in at around 10:30 am and after a long day in surgery we finally were able to go see her at around 8:30 pm. She was a trooper. She remained stable the entire time and everything went as smooth as could be expected. They took her kidney out piece by piece. It was very large and in order to do it laparoscopically they had to pay attention to every little detail. Dr. Saperston did a wonderful job. After the kidney was removed Dr. Hirsh came in and placed her Hemodialysis (HHD) Catheter and her Peritoneal Dialysis (PD) Catheter.

During the past few weeks since Morgan's surgery we have been experiencing many emotions and situations. The day after surgery she began hemodialysis for 3 hours a day for 3 days. With HHD her blood was removed from her body cleaned in a machine and then pushed back into her body. This is a high risk procedure on anyone, but even more risky on someone Morgan's size. All went well until there was a blood clot in the line. When the blood is outside of the body it wants to clot and there are blood thinning medicines that can help to prevent the blood from doing this called Heparin. The day after surgery it was very difficult for Morgan to have very much of this medicine due to the fact that in order for her surgical wounds to heal they needed her blood to clot around the wounds. Thankfully they were able to let some of the medicine sit in her catheter and they carried on with her dialysis.

After 3 days of HHD she began her first day of PD. This started out very smoothly. The catheter was working great and everything was going well. Unfortunately, after only two days she contracted an infection in her peritoneal cavity. It was very scary watching her go through all of the pain the infection was causing. Thankfully they were on top of it and got her on antibiotics right away. The infection cleared up, but not without causing damage. They had to discontinue PD and begin HHD for 4 more days, and her internal organs became damaged and sensitive due to the infection and all of the antibiotics. Her stomach was in pain and she could not tolerate her feeds so they placed a NG-tube (feeding tube through her nose) that went past her stomach and into her small intestine. She has been receiving her feeds continuously since.

After her four days back on HHD they were able to start her PD again. Because of the infection they had to use a high concentration dialysate that would pull more fluid off of her. They were able to dry her up as of two days ago and they slowly began to lower the concentration and add more fluid on her by increasing her feeds. She has done very well. For the first time in her life she is not on any blood pressure medicine. She is happy and smiling every day and she is moving along well.

We still have a couple weeks of figuring her dialysis and feeds out. They are hoping to start feeding her in her stomach again soon, and get her back to feeding the way she was before her infection. Once she is all set we will do some training for dialysis in the hospital and then she will be discharged and we will complete our training at DaVita.  After training is complete and we feel comfortable we will be sent home. This has been an emotional ride and it is not over for us. We plan to do everything we can to avoid infection in the future and look forward to having our baby home until transplant.

Life in the PICU

Since bringing Morgan home we had very little to blog about regarding her condition. She remained pretty stable with minor bumps in the road. However, in late January that began to change. She went in for a small procedure to change her feeding tube to a more comfortable size. After getting some lab work done prior to surgery it was revealed that her potassium was high.  High potassium can pose risks during surgery.  Critically high or low levels can cause cardiac issues, and anesthesia can increase that risk even more. In order to lower her potassium Morgan was prescribed a medicine that would go in her feed and help to pull the potassium out of her feed and body.

Once we got her medicine to the correct level her potassium dropped back to a normal level. As usual though, if it isn't one thing it is another. The medicine has some side effects, and Morgan unfortunately suffered through a few of  them. The first side effect was her inability to move her
feeds and waste through her body properly. It also increased the sodium in her feeds. We were already giving her a sodium supplement so her levels increased too much. Her high sodium levels caused higher blood pressures. Last Wednesday we went in for a regular checkup with her nephrologist and cardiologist. Just as they always do they checked her blood pressure prior to meeting with the Doctor. Generally her nephrologist wants Morgan's blood pressure to stay between 85 and 130 systolic (top number). When she was checked her systolic was at 158, 152,160, and finally 148. Once this was addressed the cardiologist found that he heart had been experiencing some minor stress from these high blood pressures. They then decided it would be best to admit her to the hospital to get her blood pressure back on track.

Being admitted to the PICU brought us into a whole new environment. We came into a unit completely unlike the NICU. Rather than silence and soft spoken staff, we had noise all around the unit. It was overwhelming to say the least. Morgan was immediately placed on an I.V. drip to stabilize her blood pressure. It took a couple days, but it is now stable and she is off the drip. However her kidney has continued to grow and her doctors, and us as well, believe it is time to remove the kidney and start dialysis. The doctors are feeling that the sooner this happens the better it will be for her.

After careful planning and a care conference with everyone involved we have scheduled for her to have her remaining kidney removed as well as a hemodialysis (HHD) and peritoneal dialysis (PD) catheter to be placed Monday Feb. 23rd at 11:30 am. This procedure will likely take 5-6 hours for both catheters to be placed. For clarification HHD is when blood is pulled out of the body to be cleaned and pushed back into the body. HHD will likely be used continuously after surgery to give her peritoneal cavity (basically her belly) time to heal before using the PD catheter. PD will fill her belly with a glucose fluid that will collect the waste in her body. The fluid will have what they call a dwell time, meaning how long it sits, and will be emptied into another bag. This will repeat as often as needed.

Most of the time spent in the hospital will be getting her fluids and levels just right as well as training Randy and I to feel comfortable enough to continue her PD at home. Once we are able to rely on PD her HHD catheter will be removed. We will do our best to keep everyone updated, but I am sure the next few weeks will prove to be busy and overwhelming at first. I have no doubt that Randy and I will adjust quickly as we did before, but it will be a new learning experience.

Sorry for the delay in the news, but this has been a rush of information for us. We went from a regular check up to surgery and dialysis rather quickly. Thank you all for your continued support and love. It has been a challenging time in our lives, but we wouldn't trade it for normal if it meant we couldn't have our Morgi Moonpie. Once again thank you all very much! I am sure everyone will have questions about Morgan's future after reading this and we will try to address those questions in our future blogs. As of now we are doing what we can to process all the new information regarding dialysis.

We feel confident in the staff at St. Luke's. We are happy to have such capable nurses, doctors, reparatory therapists, surgeons, nephrologists, social workers, and many others involved in all of her cares. We can't feel much but absolute appreciation for the St. Luke's Hospitals.