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!!!

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.

1 Week old

Morgan is 8 days old today!! It has been a rough first week of life for Morgan.  It's been a somewhat busy past few days for Casey and I and I'm happy to report not quite so busy for Miss Morgan. She has been receiving a bit of mommy's milk the past few days which is great, she is now off of her nitrous oxide which is awesome as well. They removed her IV that was in her belly button so now she is down to 1 IV line in her left hand and her picc line in her right arm.

The doctors are still having a bit of a tussle with her blood pressure, which hasn't been as high as it once was, but is still to high for a baby her size. They are hoping that since she's been eating some milk that will help her body absorb some more of her blood pressure medicine seeing as how two of them are given to her via her feeding tube and not into her IV line.

The good news for the day though is that Morgan will not have to go into surgery tomorrow to remove her Kidney!!! Her urine output is back up to 2.7ml which is fantastic. She did dive off for about a day or so down to 1.4ml but she has made a steady climb back up and hopefully will continue to do so. As long as she can get rid of her excess fluid and her lab work comes back that her kidneys are working at least "ok", then it'll be a little while before she has to have her surgery which is great. That will give her more time get her lungs and body stronger.

Also good news is that with her urine output increasing they are able to giver her some more fluids in her IV and also more milk in her feeding tube. They have started to give her some very nutritious fluid through her IV which will hopefully help her grow a bit stronger and have given her a bit extra milk every time they feed her.

They have also backed off a bit on her morphine which has made her be a bit more awake and I had a great surprise this morning when I came into see her. Both her eyes were open and she was trying so hard to see just what the heck was actually going on around her. Casey and I have been able to witness her trying to peak out of one eye before but she couldn't keep it open for more then a s second or two. Was absolutely fantastic to see that!!

Morgan's kidney specialist Dr. Jenkins will be back into town on Thursday so Casey and I are very much looking forward to sitting down with him to see how things are looking from his perspective. He keeps very close tabs on her via his computer. He is constantly checking on her labs and speaking with the doctors on hand at St. Lukes.

Morgan is slowly but surely doing better. A step in the right direction, no matter how small, is still a step. Morgan's steps are small and we couldn't ask for more. Her mother and I are very proud of her


Thank you all for your thoughts and prayers. They mean a lot to us and we are very appreciative of it.

Also, a very big thank you to the St. Lukes Children's Hospital NICU staff. They have all been unbelievable in their care for Morgan and to Casey and I. They always keep Casey and I informed about everything and make sure that we are well taken care of. Dr. Knight, Dr. Thorton, Bryanna, Rebecca, Sheryl, Heather, thank you so much for your heart and care. And also to all the other staff who has helped with Morgan you are all outstanding!!

Little Miss Morgi-Moonpie

Little Miss Morgan is doing well I am happy to report. It has been a long day, not only for Casey and myself but more so for Morgan. She's had an up and down past 24 hours but tonight when I left her bedside she was stable and holding strong.

We having been struggling with Morgan's blood pressure lately. Because of her condition she, at times, has trouble circulating blood in and out of her lungs. This in turn means high blood pressure for her. Also, come to find out, the Kidneys play quite a large part in our bodies control of blood pressure so with kidneys that don't function properly obviously they won't handle the blood pressure like they should also. Thankfully we have an unbelievable team of doctors and nurses that worked diligently all day to get her back to a stable condition.

When I arrived this morning to check in on her, her systolic pressure was upwards of 120. At one point throughout the day it was upwards of 140. This is quite high as there target for her is well below 90. After adjusting how often she receives her medicine, which took a bit more work then one would think, they got her back on track. They had to add in yet another IV line to do this which, in Morgan's true fashion, was difficult for the staff to get in but none the less they accomplished the goal.

They gave her some extra blood today as well which they are hoping will help with her blood-oxygen levels. They also started her on another medicine today to help her need the nitrous less and less until she's off it. Also, they have decided to give her the diuretic medicine on a regular schedule to help her loose more fluid by increasing her urine levels which I am happy to report is working quite well. Never been quite so excited to see a little one's pee pee so much as this one. They were hoping to have her urine levels at 1ml out per hour and last we were told (at around 7:00) was that they were up at 2.3ml per hour. That is twice what they are giving to her in IV's and we can already see the difference. She lost weight last night, which is a first for her, and her little body isn't nearly as puffy as it has been. Casey and I have even joked that her nose is back because her little cheeks were big enough that they were starting to hide it.

Dr. Jenkins, Morgan's kidney specialist out of Portland, was back in town also. I got to speak with him for a moment to hear his thoughts and insights. They are beginning to develop somewhat plan and direction for her. They are planning on monitoring Morgan through the weekend to see how she is doing and how well her kidneys are working. They are going to have a conference on Monday and if she is not showing signs of obvious improvement then they will be going into surgery most likely on Tuesday.

In this surgery they would be removing her right kidney. They must do this to make room in her little, overly full tummy, for her dialysis. They will also install a catheter for her peritoneal dialysis. This is a type of dialysis that typically works much better in smaller children. There is some obvious risks with this procedure but doctor Jenkins has assured me that the surgeon that would be performing the operation is one of the top in the nation for this type of surgery. Post surgery there are still lots of risks being mainly infections and leaks, but with great care it can be a very good thing for Morgan.

We are still hopeful that her kidneys will begin to function well enough to avoid this. That is what would be best for her but it is nice to know that they are planning and preparing just in case they don't.

All in all it was a very busy day for Morgan but she is strong!! She has a strong will and obviously does not give up easily. When I left her tonight she was holding strong and stable. Her blood pressure was down, her pee pee was filling up the catch tube, her breathing was doing well and she looked at peace. Comfy and snoozing peacefully, which after today, I couldn't have asked for much more.

Once again a great big thank you to everyone's thoughts and prayers. I do believe that last night I forgot to attach the link to Parker's blog so I will be doing that tonight. Casey has actually been in touch with Parkers mommy a little bit this afternoon which is great. Kristen thank you so much for your thoughts and concerns especially for a family that you have never even met.

Morgan also had a surprise visitor today. Dr. Knight, from the hospital where she was born, stopped in to see how she was doing. Dr. Knight was the Doctor that took care of Morgan while she was there. He did an outstanding and over the top job, as well as the rest of the staff there. We are forever grateful for all that they did for us.


Also, one more thing to note, Casey and I finally decided on Morgan's middle name!!
Morgan Sawyer!!!!! And we love her very much so!

http://parkersfightagainstpkd.blogspot.com/


 

Morgan Day 5

 Morgan is 5 days old today. She has had a busy life thus far and the unfortunate truth is it will probably only get busier for her in the weeks and months to follow.

As for the update on how she is doing, today was a relatively quiet day for her. Probably the most relaxing day for her so far as there were no new pokes or prods. They did have to adjust her pick line (that is the IV that they put in her that goes from the crease of her elbow into her chest.) Thankfully it was relatively easy procedure for her and she didn't protest to much.

Morgan is very sensitive to noise and touch and when she gets to roused her lungs clamp down and she has a hard time getting oxygen into her blood. They have to up her oxygen levels and then slowly bring her back down as she relaxes. This makes it quite difficult for the doctors and nurses to do the things that they need to but they have been doing an awesome job with it. It also makes it difficult for Casey and I as we can't really be overly touchy feely with her, which please believe me, we really want to be but right now just cant. :( We do give her soft kisses and whisper to her how great she's doing, how proud we are of her and how much we and everyone else loves and cares for her.

 They are still working on her blood pressure as well and have actually started a new medicine today that she gets on top of the one that she was already receiving. It hasn't helped as much as they would like but they still have a few more options if it continues on this path.

Some good news though, they have started to back her off on her nitrous oxide levels that she has been receiving. The mix nitrous with her oxygen and it helps keep the blood vessels in her lungs open so that they can receive the oxygen that they need to. She has been at 20 ppm and she is now down to 5 ppm which is good, she hasn't seemed to struggle without it and actually has seemingly been doing a bit better with it. The doctors did advise though that we probably wouldn't see any major changes with her until the dropped her down below 5 so they are going to start slowly dropping 1ppm at a time now and see how she does.

She also received some new medicine that they are hoping will help her kidneys process more fluid. She has not been putting out nearly enough and is actually putting out less liquid then she intakes which makes things very difficult for her seeing as how they are already giving her the least amount of fluids as possible. She was up to 42ml of urine in the past 24 hours which is great on where she started at (11ml) but unfortunately its still not enough. The medicine did seem to do some good though because shortly after they gave it to her she produced 9ml within the next hour which was an improvement.

As for Casey and myself we are doing well. Its hard and stressful but we both agree that we will be bringing her home in the next few months. The told us we would be here anywhere from 3 weeks to
2 1/2 months so we are hoping to be home with her in time for Christmas. Are days are relatively busy, we are at the hospital before 7 every morning, that is when the nurses do a shift change and we like to hear from the night nurse how things went. The doctors make rounds at around 9, so we like to be there to hear what they have to say and what their plans are for the day with her. Then it's a lot of waiting. We hang out in the waiting room all day and check on her frequently. We don't like to stay in her room all day because we are worried that we may stress her more then she needs to be and it also lets the staff do what they need to without some overprotective parents giving them the ole hawk eye.

 As I'm sure you can all imagine this is a hard time for Casey and I. To see our child go through this is unimaginable. We struggle with being in limbo right now. They are waiting to see how she will do on her own without any sort of major surgery or actions and it's tough. We just like to focus on her improvements everyday no matter how small they may seem they are huge to us. We had no idea that this was coming and even if we had, there is no way to prepare ones self for it. The doctors are trying to put together some plans for what may or may not happen. We haven't heard much report back on that but once we do we will be sure to let everyone know.

We appreciate everyone's concerns and comments, they mean more to us then any of you will ever know. When we checked her blog last night there had been over 500 views to her page and that amount of support is awesome and amazing. Please keep sending your thoughts and prayers, she needs all she can get right now. I hear that people are having a hard time leaving them and I believe that you have to sign up to google + to leave them so feel free to do that if you'd like. It's simple and there are no costs to do so.

Also there is a blog that Casey and I have read of a little boy named Parker. I believe he is around 3 years old now, and it is a great story. He was born with the same condition as Morgan and it was great to see it all turn out so well. It gives us great hope. It has also given us a little insight into what is in store for us in the years to come. The ups, the downs, the joy and the pain. I have attached a link for anyone interested in reading it.

Once again thank you to everyone, we will update again tomorrow

Our Baby Morgan

Morgan  

18"  6 lbs. 2 oz.

Casey and I have decided to do a blog to try and keep all of our family and friends a bit better up to date with how Morgan has been doing. We are wanting to also keep everyone informed about her condition and where she is at with it. We don't want anyone getting misinformed about her so hopefully this will also be a place where everyone can come to and find out true facts of her condition and how things are going on a daily basis.

Baby Morgan was born into this world at 4:44am on October the 17th in the year 2014 at the St. Lukes Hospital. She is a beautiful baby girl who has 3 older sisters who love her and so excited to have her with us.

Morgan was born with a very rare disorder. She was born with what is known as Autosomal Recessive Polycystic Kidney Disease (ARPKD). This disease usually only occurs in adults and rarely does a child actually develop it in the womb. This only happens with about 1 in 40,000 babies and it is purely genetic. There was nothing Casey or myself could have done to prevent it. Casey and I are both carriers of the gene that causes it and since we are both carriers any babies that we have together would have a 1 in 4 chance of having the same condition. '

ARPKD is in fact a disease that has caused cysts to grow on Morgan's kidneys. It causes her kidneys to be enlarged which also means that there is not a whole lot of room left for her lungs. This in turn has caused her to have smaller then normal lungs and also has made them underdeveloped which is why she has a hard time breathing. The doctors did also inform us that the disease can have an affect on her liver as well, but that does not usually happen until adulthood.

At the hospital, shortly after Morgan was born, the doctors realized that she was having some difficulty breathing. They took her into the NICU and put her on a ventilator to help her breathe. After taking and examining some x-rays they realized that her lungs where small and not inflating, and that her kidneys were enlarged. They decided that Morgan needed to be taken to the St. Luke's Children's Hospital. They flew the helicopter in from the Children's Hospital, and carefully prepared her for the flight, which also included a chest tube on her left side to release some air that had become trapped between her lung and her chest wall.

Once she arrived they stabilized her, took more x-rays, had an ultrasound for all her internal organs, and took pictures of her heart. They put another chest tube in on her right side to release some air that had also been trapped. They called the Kidney Specialist, who operates out of Portland Oregon, to talk with him about her unique situation. In a very fortunate turn of events the specialist just so happened to be in Boise for the weekend and was able to come to the hospital right away to see her. He sat down with Casey and I and explained a bit about what was going on, about the type of Kidney Disease that they believe she has, and some of the things that we could expect.

She is on day four and here is a brief synopsis of what has taken place since we have been here.
Her kidneys are working but not as well as they should. They are hoping for her to be producing 48ml of urine in a 24 hour period. Her first day was 11ml, yesterday she was up to 26ml. Still a ways from where they want her but making progress. They have a really good handle on her breathing right now. They give her extra oxygen and Nitrous Oxide to help open her vessels in her lungs. She is very sensitive to touch or loud noises so we have to be very quiet and very delicate when we touch her. They have removed the chest tube on her right side and are, as I am typing this, preparing to remove her left one as well. Her progress is slow but it's still progress and that's very important right now.

What Morgan's future holds is a lot. Morgan's kidneys will never recover or be normal. There is a chance that she will have to be put onto dialysis. Once she reaches 1 1/2 or 2 years of age she will probably need a kidney transplant. Either Casey or myself will possibly be able to donate one of our kidneys so we will not have to be on a list and wait for a kidney to be available. Her lungs will eventually heal and get better. There is a chance that she will have respiratory problems in the future but not very likely.

Things with Morgan are changing day to day and hour to hour. We will be trying to keep this updated as much as we can. We will let you know all the information about her condition that we learn from the doctors.

Please note that every situation is different. Feel free to look up information on this for yourself but just remember every case is unique. There is a lot of information out there and not all of it pertains to Morgan's situation. We don't want people being misinformed so please come here to learn and read about her and how she is doing.

When Casey and I sat down with Dr. Jenkins (the kidney specialist) he told us that in 30 years he had only seen 5 or 6 cases of this between Idaho and Oregon. He also told us of a little boy close by who had a situation very similar to Morgan's. Close to the same lung size and close to the same kidney size. He had a transplant at 18 months and is now a fully healthy 8 year old. He has to take some medications everyday for his blood pressure and his transplant but other then that he just fine. Gives us a lot of hope for Morgan.

Thank you all for your thoughts and prayers. Once again we will try and keep this updated as much as we possibly can so check back often.