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.