It has been a long night. We had a pretty good day with Katelyn yesterday considering everything. We checked into a hotel with the rest of the family so Sean can play in the pool and we can have a change of scenery. My mom Patty is still at the Ronald McDonald House cleaning up. We will have to get her a room here with us tonight since we will be checking out of the Ronald House today. I could not believe how much stuff we accumulated in Katelyn's Hospital Room and our room at the Ronald House. We are going to have a full van heading home. I have to call the funeral home today and find out how long we have to wait to take our girl home. We might have to make a trip back down to get her depending on how long it takes. Then it will be settling back in at home and planning her funeral. It will be super hard to see her room and all of her stuff when we get home. We have a house and two garage stalls full of baby stuff. we are still emotional and break down often, but we are trying to focus on our boy and all of the things Katelyn gave us in her short life. We now have to carry on her memory and the memory of her big brother Evan. They are our two EB Angels and we are very fortunate to have had them both in our lives. It just sucks it was for such a brief time. Thanks for all of the prayers and condolences. Many people have said Katelyn has touched their lives and that is nice to hear. We started this post to keep friends and family informed and it has become much more. Bri did an awesome job taking beautiful pictures of our last day with Katelyn. We cannot thank her or the other friends who made their way to visit us at the hospital. Many of them are now lifetime friends. We will add many of the pictures tonight when we have time. More to come...[...]

Katelyn passed away in her mothers arms at 1610 hrs peacefully. She was well medicated and was without her breathing tube for only 20 minutes. The hospital staff and everyone worked very well and were very sensitive to our needs. My wife is just as strong as my beautiful daughter. We are sad she is gone but glad to see her pain is over. Thanks to everyone for all they had done. I will update a few more times and try to post when her funeral will be. If you feel the need to send flowers or donate from now on please do so to one of the EB organizations on this site or the Ronald McDonald House. We will donate any unused donated monies to the DebRA organization as well. Katelyn weighed in at 6 lbs 5 ounces so she was definitely gaining weight well. Thanks again and I will update again tonight after we clean up and visit with family.[...]

Katelyn is still stable. We had a long talk with our doctors and soon Palliative Care about her comfort. We will be removing her breathing tube tonight and raising her medication. They are also stopping labs and other efforts to ease her suffering. She also does not have to endure anymore dressing changes. One of the Respiratory Therapists is also a photographer so she is here taking some pictures for us. We also reached out to Bri from Life on Paper to see if she can come and take pictures as well. The more pictures the better. Jill and Dave are also bringing pizza and food for us which is great not having to worry about eating. We are taking pictures so I have to get back to my girl. Thanks for everything and we will update as we can and post funeral arrangement information as well.  [...]

(Mom post)The doctors were just in. They gave Katelyn a day, maybe two. She appears to be resting comfortably. My goal is to hold her and let her know that she is strong, beautiful, and that she is one loved little girl.[...]

First off we would like to thank all of the people who worked at and attended the benefit Dinner for Katelyn back home tonight. They raised over $6,000 which is amazing. We wish we could have been there to help out and thank you in person. Getting all of this support makes me feel like I should do something in return. It is hard not to since I am usual the one who always gives without asking in return. From the bottom of our hearts we THANK YOU![...]

Katelyn is holding her own still. Mommy was able to hold her for almost three hours today. She loved every minute of it. It is hard to believe you can feel joy and great sorrow at the same time or at least a wave of each every few seconds. Sean is off playing with Grandma and Grandpa who arrived last night from Sault, MI. He should enjoy playing in the pool with them. I tried to explain everything to him last night and he did not want to hear it. He told me the doctors can fix here and she just needs to rest. When we go home without her he will have many questions I think I will have trouble answering. I guess we will cross that bridge when we get there. It is so weird talking about her passing with her still being alive... It just does not seem real. I know the emotions certainly are.[...]

The surgery is off now. Katelyn's care is going to be controlled by the Palliative Care team here now. Her kidneys and lungs have passed the point of no return. Our plan now is to keep her as comfortable as possible and see what happens. They might want to take her off the vent so we do not prolng her suffering. We do not want to make those decisions so we hope we don't have to. Katy will get to hold her shortly so that will be nice. It is going to be a long few days. Hopefully most of the family will get to see her before she goes to join Evan.[...]

The surgeons pulled Katelyn's G/ J tube tonight and is schedule for surgery tomorrow to have a new one put back. Her labs were redrawn and her toxins have started down trending so that is excellent news. They only dropped a bit and are still extremely high but some good news is the best news we have heard in almost two days. She was too cold after all the X rays and dressings change so Katy was not able to hold her tonight. Plus she has a hole in her tummy so that is not cool. They say it heals overnight and will seal better once they reinsert the G/ J tube. We are hoping that they think she is healthy enough to do the surgery so that is good news. Just wanted to share the little bit of good news and about the surgery so we have no surprises tomorrow. Still hoping for the best. Thanks to all of you for the support we greatly appreciate it. Lots of people joining PostHope.com as well to blog for our Katelyn. Thanks!III[...]

Katelyn had her seventh X Ray of the day an hour or so ago. They found out that she does not appear to have NEC. I thought they were talking lungs but they were talking intestines this morning. The J tube is in the stomach and not in the intestine as it is supposed to be. They are talking with surgery to try to decide how to proceed from here. No news on her renal panel for this evening. They said they were not running it until morning. She has not peed at all today. She did poop a few times but did not pee from what we have seen. It does not appear the kidneys are very happy. Her dressing change was very long today because of the X rays before and after and her headgear stuff falling off twice today. She is resting well and has a good heart rate for the first time in a few days.[...]

Katelyn is one tough girl. Her toxins are still building in her blood. They also see an infection near or in her left lung now so they are resuming some broad spectrum antibiotics to see if it helps. Her G tube was leaking really bad so they stopped feeds as well and switched back to TPN and other fluid feeds through her broviac. We had visits from the Palliative Team and our doctors again a few times today. We took some more pictures with both of us holding Katelyn last night. It is very nice and different to see her from that perspective. Some of our families are braving the roads and headed down to see Katelyn. Hopefully we are prepared for whatever happens next...[...]