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.