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!!!

A month old and a few more firsts

It has been a bit since we have updated Morgan's blog and Morgan has been a very busy girl! She is a month old now and since her surgery she has been resting and growing stronger. Her breathing has been getting much better and 2 days ago they were able to remove her ventilator. They removed her breathing tube and she was able to cry for the first time. Never thought a crying baby could sound quite so wonderful. She was on a C-Pap mask for one night and a Nasal Cannula for a day and is now support free and breathing all on her own.

She is also maintaining her own body temperature now and has been moved from her warming bed into a crib. She has clothes now, a first for her, and today even received her first bath. Since surgery they have had to reduce her feedings because she was having a hard time keeping her milk in her tummy. Fortunately, since they have removed her breathing support, she has been doing much better about not throwing up so they have now been feeding her milk again and today they went from 5ml's every three hours to 10mls every three hours.

Morgan's blood pressure is still a concern for her doctors and they continue to work with her medicines to try and keep it down. Her right kidney has grown substantially and continues to squish her little lungs. On Monday they are going to take Morgan back into surgery to remove her right Kidney and also insert her dialysis catheter. Her kidney is still working and is producing urine but it is not cleaning her blood as well as it needs to. With it's size and complications it produces for her blood pressure, the doctors need to remove it. By removing it, it will also make enough room in her belly for her dialysis fluid.

Morgan continues everyday to impress her doctors with how well she is doing. Dr. Jenkins, her kidney specialist, was pleasantly surprised to see her off of her ventilator. Her squeals and cries are very welcome noises for Casey and I. We are also able to hold Morgan with much more ease now that we don't have so many tubes and sensors to move with her. Before, we were only able to hold Morgan by laying her in her bed into our arms, now we are able to hold our swaddled baby.

Morgan still has a few more hurdles to overcome but with her strong will and spirit we know she will do great. Also with her great nurses and doctors watching over her it only improves our confidence.

Post Surgery

Yesterday little Miss Morgan went in for Surgery at 9:30am to remove her left kidney and put in her G-tube. She did awesome!!! The surgery went very well for her and they were able to do most of it via laparoscopic procedures. They did have to make an incision down low on her abdomen to actually remove the kidney but the majority of the surgery was done with the least amount of invasion possible. She was out of surgery and back into her room by 3:30 in the afternoon which was great. We were actually anticipating her surgery to take a bit more time then that.

She had a pretty good first night post surgery. She was still fairly sedated for most of the night but this morning when we arrived to check in on her she had her eyes open and was squirming around quite nicely. It was so great to see her doing that. They had to go back up on her ventilator a bit which was expected but the really good news is that her right kidney is still working surprisingly well on its own and her urine output is still up almost the same as it was pre-surgery. Her specialist Dr. Jenkins made a stop by this morning to check in on her and was quite surprised with how well she was doing. He said that little Morgan just keeps surprising everyone with how well she continues to do with all of this.

Casey and I are so relieved that everything has turned out so well for Morgan thus far. It was a long night pre surgery and a very long day yesterday. Once again her doctors and staff have continued to do an above and beyond job. Her surgeon and his staff did such an excellent job with her and all the nurses and doctors in the NICU are so unbelievably great. They were all so excited to see her come back up to the floor and were all buzzing around to make sure she was very well taken care of.

We have had quite an out-pour from all of our friends and family as well. We once again want to thank everyone for the thoughts, prayer and voices of concern. It is unbelievable to see what a strong, close nit group there is that surrounds us.

They are now working with her fluid intake to try and get her some more calories to help her grow. They will be working with her ventilator as well to try and get it down and hopefully soon to be off of it all together. They are still monitoring her quite closely to see how she is doing with her right kidney and are hopeful that they will be able to leave it in. Seeing as it is working quite well it will help out a lot with her dialysis. It will allow her body to help regulate her dialysis and make it a much simpler process. They will be putting in her dialysis catheter sometime early next week.

We will be giving more updates as things progress and a big thank you to everyone who follows her and has such concerns for Morgan. Thank all of you for the thoughts, prayers, concerns and support.

Big News and Steps Forward

Morgan is now 16 days old!!!

The past week has been a pretty good one for little Miss Morgi. She is doing quite well, her breathing is improving a lot, in fact, her oxygen levels are just 2% above regular room level and they have also been able to back her off a bit on her pressures as well. With Morgan's ventilator it gives her pressure whenever she inhales to help her breathe. Since her Kidney's are squishing her lungs so much it's difficult for her to take breaths on her own. The ventilator just helps her with a little push of pressure every time she takes a breath. The ventilator also helps her hold in a little bit of pressure after she exhales to help her keep her lungs open. It's great that they have been able to back off on these pressures. It means that she's getting stronger and closer to being able to do it all on her own.





















Some other really great news is that Casey and I both got to hold Morgan on Wednesday night. We are able to hold her now about once a day if she is in fact having a good day. It's a bit of a process to get her into our arms but wow, what an awesome feeling to finally get to hold your baby girl for the first time.

The other big news is that on Tuesday morning on or around 9:00am they are going to perform surgery on her to remove one of her Kidney's. They will be removing her left Kidney which will hopefully help relieve some of the pressure on her little lungs and also make room for her dialysis. At the same time as her kidney removal they will also be inserting what is referred to as a G-tube. This is a feeding tube which goes directly into her stomach and pokes out of her side. This will be much better then having a tube in her nose for feeding. Much more comfortable for her as I'm sure we can all imagine.

After her surgery they will be keeping a close eye on her other kidney. They are hoping to be able to keep it in as it will help out immensely with her dialysis and make things much simpler for her throughout that process. They may need to remove it as well which would mean a second surgery for her and could possibly be as soon as the end of the week. Thankfully if they do have to remove her second kidney it should be a much easier surgery for her then this first one.

They will also be giving her a catheter a few days after her surgery as well. The catheter will be for her Peritoneal Dialysis. This is the type of Dialysis that Morgan will be going home with. Rather then the traditional form where they actually filter her blood through a machine, in this process they actually will be putting fluid into her Peritoneal Cavity which is in her belly. The fluid will stay in for a certain amount of time and then pumped back out. This process will be repeated for a determined amount of time, usually throughout the night while she sleeps.

This is very much so a scary time for Casey and Myself, but we both feel very comfortable with her doctors and her staff. We view it as a huge step forward for Morgan and a big step towards being able to take her home. Her team of Doctors and Nurses are beyond outstanding!!! Casey and I are so very grateful for all of them. We were able to meet her surgeon, who has been given amazing praises from her Specialist Dr. Jenkins. Dr. Jenkins assures us that hands down there is no other doctor in the states, or in the world for that fact, that he would rather have do this surgery for her.

Morgan wasn't able to dress up and go trick or treating this year so her big sister took on the responsibility of helping her out. She went out and has promised to share her loot with her sister as soon as she is able to. She had a really great time going out for Halloween here in Boise. She has been doing really well with all of this. She loves her sister so much and also is waiting as patiently as possible to be able to take her home. Her oldest sisters are also very much so looking forward to getting their new little sister home. Diapers and babysitting are in all of their very near futures!!

We are not sure as of yet when we will be able to bring her home. We don't believe we will be home for Thanksgiving this year but are definitely looking forward to being able to spend her first Christmas at home.

Once again a big thank you to everyone for the thoughts and prayers. Will be updating again on probably Tuesday evening or Wednesday to let everyone know how her surgery went.