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.

Christmas at home!

We had a wonderful time rooming in with our little Moonpie the weekend before last. She kept us busy, but we got a real good feel for what was to come at home.  On Wednesday 12/17/14 we were finally discharged. After exactly two months in the hospital we finally took her home! Her big sister was beside herself. She just could not wait to meet her sister. She is the most patient 4 year old I have ever met. Since bringing Morgan home she has been a wonderful helper!

Morgan is on medicines around the clock. With some work and tweaking of the routine I have finally felt like I have a good groove going. She seems to be doing well. I cannot lie there are things I miss about the hospital. First of all the staff at the St. Luke's NICU is amazing! We really had an opportunity to bond with some of them. I also have found myself missing the security of the monitors and labs. I have confidence that Moonpie is stable, strong and doing fine, but nothing compares to the security of the monitors and staff at such a wonder hospital. I even joked that I would like them to come live with us during the transition. That being said I feel that everything is going well here. Just like any baby we wish that she could tell us what her cries are about. She hates having a poopy diaper, loves her bottle, enjoys tummy time, and most of all LOVES to be held.

Randy and I have been so super busy with everything, can't always get out of the house when we want to, but with some time we will get a routine together that will accommodate leaving the house. Morgan left with a g-tube for her feeds. She gets 62 mL every 3 hours through her g-tube, by Kangaroo pump. Before starting the feed I would offer her 25 mL of that feed by bottle. She did so well with it I went up to 27 mL. Yesterday I went up again to 30 mL and she did great. It is quite a challenge leaving with her feeds and med times. Hopefully soon she will be off her feeding pump during the day time. She does so well taking half of her feed by bottle. I will continue to work her up to bottle feeding during the day.



Morgan has many doctors, nurses, dietician, home healthcare, speech therapist (for her bottle feeding), etc. working with her to ensure she remains stable and continues to improve and grow. We are really hoping that she will be able to keep her kidney in until transplant. We are also well aware of the possibility of dialysis. Right now we take it one day at a time. Thank you all again for everything. We will continue to update the blog with her status. As of now she seems to be as happy as we are for her to be home!

Hope everyone has a great Holiday season!!! Merry Christmas and Happy New Year!

Moonpie Rooms In!

It has been a long time since I have gotten a chance to update the blog. Since the last update she has been improving and seeming to feel better all the time. Last week I was able to go home to stay the night with Randy and big sister, but unfortunately ended up feeling very sick. Since I was sick I was not able to go in and see Morgan. Thankfully for our nurses they gave her extra snuggles and I was able to call every few hours to check in and see how she is doing. By the end of the week I was feeling better and we were all back to see her again. When we got back we were able to see the improvement we had been hearing about over the phone the entire week.

In the past couple weeks Morgan's feeds and blood pressure have been the focus. She went from being on a continuous feed day and night to receiving just over 2 ounces in 45 minutes during the day and continuous feeds only at night. Her biggest issue with her feeds was being able to hold everything down. She was throwing up too much of her food and medicine and wasn't able to grow the way she should. Now she is going days without throwing up, and when she does it is a very small amount. They are also adding formula to my breast milk to add more calories and other vitamins and nutrients she needs for better growth. This addition to the milk is not because my milk is lacking in the vitamins and nutrients, but because she needs more than other babies in order for her body to absorb what it needs. Her kidney is doing well enough to avoid removal and dialysis at this point, but still is not to par with a normal healthy kidney unfortunately. She just needs a little extra to keep healthy. We are hoping the extra calories gives her the growth they want to see to have her come home.

As for her blood pressure, well that is a whole different battle.  She is on a slew of medicine to attempt to maintain her blood pressure. Due to her kidney disease she has a higher blood pressure other babies as well. Her high blood pressure can be hard to maintain, and that is very normal for her condition. Right now they are increasing one of her meds and also gave her another med that is more potent to keep her blood pressure under control while hopefully coming off some of those other meds. Right now she is getting close, but she determines how fast that can happen. She receives meds around the clock right now and they are hoping for her to have a more manageable home care, and she is getting there.

We couldn't be more proud of her! She is making so many improvements. Before we are able to go home with her they want to give us the opportunity to "room in with her" and become comfortable with her daily medical regime. We are very excited for this opportunity. This does not mean we will certainly be going home with her soon, but there is a chance and we are very excited to just have the opportunity to spend the weekend to stay in the same room as her for 3 nights. This is a major milestone for us. Unfortunately we are not able to bring Isabelle in with us, but if all goes well she will be able to see her baby sister soon.

At this point Randy and I do our best to remain realistic as well as hopeful. We hope to go home soon with her, but understand that she will let us know when she is ready, and we don't want to leave too soon. We embrace her milestones, and on the day that we are driving home, I cannot even begin to express how exciting that moment will be. We would love for our family to be in one spot, and we couldn't think of a better Christmas present, but we will make due with what we have no matter what. We are a strong family and we will make our Christmas as good as we can, no matter what!


Thank you all again so much for your love and support. Randy and I could not get through all of this without our family and friends. This is hard on all of us, but at this point I feel that it is becoming increasingly difficult for her big sister. She is very anxious to see her sister, and it has been a long wait for her. She was able to see her for a very short time after her birth, but other than that our little girl has been waiting since March to meet her baby sister. She is staying strong and positive, but her patience is running thin. We make sure to give her extra loves every day, and she has become extra loving in return. We want her to remain excited for her baby sister. The day they come together will be a very important day for us all! :)

Morgan Fights to Win

 Randy and big sister drove over yesterday expecting to stay until Tuesday for Morgan's surgery, scheduled for Monday afternoon. As we had informed everyone in our previous post Morgan had been extubated  on Tuesday November 11th.  This was very exciting because her surgeon and her nephrologist were feeling like her other kidney needed to come out in order to give her more room for her lungs to improve. Her creatinine and BUN levels were also a major concern for her remaining kidney.  I spoke with Dr. Jenkins later in the week and he was pleased to see her coming off her breathing support. He told me that unless by some miracle her kidneys began to function much better they would still be placing her dialysis catheter and removing her right kidney.

I am pleased to announce that her kidney function has improved enough that they have cancelled her right nephrectomy as well as the placement of the peritoneal dialysis catheter. We are so proud of her for doing so well. She is making great improvements and has been very tough through this whole thing.  She has been waking up being more alert than ever. Randy and I are able to hold her for hours at a time. I broke a personal record tonight and held her for 4 hours straight. It is hard leaving her when she has her eyes open, and she is such a great little snuggle buddy.

Randy and I are willing to embrace these great moments.  We also know that this does not mean that she will not need a transplant, dialysis, or a right nephrectomy.  We are unsure what her future holds, but right now she is able to avoid this major surgery.  This gives her the opportunity to grow and become even stronger for a moment that she may need that surgery. In the next moments of her life Morgan's doctors and nurses will be working hard at increasing her feedings, increasing her weight, keeping her creatinine and BUN levels down, and getting her blood pressure under control. If all of those goals are met and her kidney function remains where it is at right now we should be able to bring her home without dialysis. There are many factors at play here, and as of now she is meeting her needs.

Randy and I are remaining positive. We are happy to be able to share good news with everyone and watching our baby improve everyday has been amazing. Morgan has been an inspiration to us as a family to embrace the moments we have with each other. She teaches us to love more and fight hard.  Morgan was not born with a job, but she has given us more than we could have even imagined. We continue to be thankful for all of the love and support that all of you have given us. We are able to be here for Morgan because of the love we have behind us. She is able to fight because of the love we are able to share with her in her NICU room. Thank you all again. I cannot say it enough!

 

In other exciting news we took big sister to get her ears pierced today.  She was tough the entire time. She didn't want us to hold her hand, and when the first one went in with a little bit of a struggle she sat there and held it all together. She then hung in there for them to get the other ear. It is no wonder her little sister is so tough. I better head off to bed now. I had a late night holding Morgan and I cannot wait to do it again tomorrow!

Thank you all again!!!