Katelyn Marie Summary (Updated 2/17/13)

01/05/13 @ 0750 hrs- Mommy wakes dad and Sean up due to profuse bleeding, ambulance ride to War Memorial Hospital, Katelyn Marie born (32 weeks gestation) at 0958 hrs, weight 4 lbs 4.5 ounces, missing 40% skin and more sloughing off.

01/05/13 at 1230 hrs- NICU team from Marquette General Hospital arrived and took care of Katelyn. It was apparent a larger hospital would be needed so medevac to Ann Arbor Mott Children’s Hospital arranged. Flight was difficult to arrange and had Katelyn safely in Ann Arbor at 2230 hrs. Mommy was out of surgery after 4+ hrs and 12 units of blood. Had to do emergency hysterectomy to stop bleeding and save her life. Dad stayed with Mommy in ICU until she was stable.

1/6/13 at 1200 hrs- Mom might be bleeding internally in ICU. More blood and plasma given. Mom was able to get up and walk as well as sit up in a chair by dinner time. Nurses might have pushed her a little too hard. Dad decided Mom was stable enough to leave and head to see baby Katelyn in Ann Arbor.

1/7/13 at 0852 hrs- Katelyn had a team of doctors and nurses caring for her at the Brandon NICU. She had her eyes open for the first time dad had seen. I arrived at 0120 hrs and took a short cat nap.

1/7/13 at 1106 hrs- Possible jaundice showing and biopsy on leg for EB diagnosis sent to Stanford. Mommy moved to OB wing at War and out of ICU, yippee!

01/07/13 at 1640 hrs- Active just a moment ago and opened her eyes for about 3 minutes wondering who the goofy looking guy was lurking over her. She tracked me with her eyes well and looked to have smiled. It was hard to tell with the tubing in her mouth. she was working her little tongue though. She looks pretty peaceful. A friend of dads, Jill, is stopping by from Detroit tonight to see her and bring Dad some food. One dermatologist called her skin condition a really long word and for short EB. Not sure if she has that exactly, but as long as there is a treatment we are ready for anything. Granny (My mom) is flying in tomorrow from MN to check out her newest granddaughter.

01/08/13 at 1020 hrs- Started bilirubin light, ultrasound showed both kidneys are there, stomach working but blocked. Katy (Mommy) still in OB at War- checked out at 1400 and home to rest.

1/8/13 at 1902 hrs- Katelyn still under big lights. Just checked into Ronald McDonald House across the street. Here is a site that talks about her conditions, including the EB, and how rare they are: http://ghr.nlm.nih.gov/condition/epidermolysis-bullosa-with-pyloric-atresia

Most of this I did not even know until I googled it. There are many types of EB so depending on what conditions/ version she has might change some of their actions. Right now they are doing what they can and what is best for her. After all of this so far I am, and probably Katy too, thankful that we were given a fighting chance with her and not a similar loss like Evan's. Katy told me about this website by Stanford where her samples were sent. http://dermatology.stanford.edu/gsdc/eb_clinic/

01/08/13 at 2240 hrs- Katelyn and Dad spent an hour staring at each other while the nurses were working on her dressings. The longest time so far we had to connect.

01/09/13 at 0647 hrs- Katelyn is headed to surgery for the pyloric atresia. They will try lathroscopic surgery if possible. No word on her type of EB, but truly one in a million. Katy is headed down with Grandma and Grandpa. It will be a long trip stopping each hour to walk to avoid deadly clots. Sean told Mommy “Don’t worry I will take care of you” last night at bedtime.

01/09/13 at 1455 hrs- Katelyn back from surgery. Installed a broviac line and corrected pyloric atresia. Hoping her EB does not cause internal sloughing. Katy 45 minutes away and anxious to see Katelyn.

01/09/13 at 2221 hrs- Katelyn rested most of the day, she has yet to pass anything from her bowel, but she was passing some gas so that is a good sign. They were able to put mom up in the hospital down the hall where they have two hotel like rooms. Waiting for the burn team and dermatologists to look at her existing and new wounds and decide how to wrap and protect them from infection. Sean had a blast with Granny today running around the hospital and the Ronald House. Dan and Janet (Grandparents) are headed back north.

1/10/13 at 1130 hrs- Vent settings lowered, lots of new wounds and blisters that will need care, but that will be a lifetime issue so we can expect that. We are going to address her skin treatment with the dermatologists and burn team later today. From all of the sites we have read the care of her EB skin will be done a certain way. There is a large group of EB parents out there ready to help so we may be tapping into some of their experience here pretty soon. No more bilirubin light.

1/10/13 at 1540 hrs - Dressing changes on her arms and legs and a couple other areas treated. New photos I added make her look like a little turkey waiting to be stuffed or a dog going pee, but to her it must be comfortable... A few blisters but most are open sores or wounds from her surgery. She is surprising everyone here on how well she is doing. Full hour off her ventilator from 1300-1400 today and did excellent. Katy is getting around better each hour. All staying at Ronald McD House. There is a wellness/ healing tree display on the wall at the House and it has little plaques honoring someone’s memory. We are thinking of donating towards one of them in our middle son Evan's memory. Had Evan made it past 32 weeks he would also have had this EB skin condition. In remembering his physical condition at birth we now have answers as to why his joints and parts of his limbs were missing skin. The difficult loss of Evan James has made all of this easier for us when dealing with his little sisters current medical conditions. We know what the alternative is and we much prefer to fight along with our little girl. I am sure Evan is doing his part for her as well from Heaven.. Instead of trying to forget the pain we felt with Evan we cherish the time we had with him and try to involve him in our lives as much as possible. Also, if you know us well we were actually told we had miscarried Katelyn at 12 weeks. It was not until two weeks later in Traverse City that we found out that we still had her with us.

1/11/13 at 1420 hrs- Burn arrived to retreat all of her wounds and change her dressings. Mommy and Sean went back to the House to rest for a few hours. Mom made her second trip walking to the House and not using the wheelchair. Mommy is speeding along on her recovery. Granny is staying until about Jan 27th so that will be a great help. We purchased (donated for) a leaf on the healing tree at the House in honor of Katelyn's middle brother Evan James. We constantly search for places to honor him and preserve his memory as well.

1/12/13 at 1200 hrs - Katelyn one week old! Katelyn went TUBELESS! Well she got rid of her breathing tube. She did excellent during the removal and transition. They have some oxygen going through one nostril with a nasal cannula so she can breathe from the other. If you watch the video you will notice she is in some pain. They did not want to give her anything because it could slow her breathing. She is much more comfortable now and resting. Mommy and I tried to comfort her for the first 30 minutes without the tube. The doctors had 5 backup plans ready in case she did not do well when the pulled her breathing tube. They didn't need any of them and we were all happy about that. Sean's Garfield gift to Katelyn somehow made it into her isolette too. You will also notice our lanyards holding our name badges for security. Katy's looks like a dog collar when she has it backwards in a few photos and no I do not have a leash big enough to control her! You cannot rub her head or skin so we simply pat carefully or hold our hands up against her. Her little EB skin is just so fragile. They call EB kids "butterfly children" because their skin is as fragile as a butterfly wing.

1/13/13 at 1235 hrs - X-ray found some areas in her lungs that were collapsing so they upped the airflow through her nose cannula. Mommy and nurse just redressed her wounds and she is feeling much better today with the air. Not looking like they will have to intubate her again as of yet. We are hoping her lungs straighten up and she can get that other air tube off. She got a little mommy milk in her mouth from an impregnated q-tip and she suckled on it a little. I would think her mouth and lips are as sensitive so we cannot use a bottle nipple or anything for stimulation yet. She was just increased to 2 CC/ hr breast milk now through her J tube. Granny has been a HUGE help! She does our daily chores at the House, entertains Sean, and does our laundry.

We are hoping to reach out to some other EB families next week and start to learn how to best care for her now and in the future. It is amazing how many EB families are willing to hop in a car or on the phone to help out. We are now part of an exclusive family working to end EB. Our test is yet to come, however we have been through a lot together and this is just one more hurdle.

1/13/13 at 2120 hrs - Took Sean to Chuck E Cheese tonight and he had a blast. We are managing to keep her monitor on her foot since her middle finger completely sloughed its skin (It looked so painful I almost cried for her). I created a little boot to hold it on so they would not have to tape or secure it otherwise. It seems to be working. Katy and I had taken over most of her general care during the day today so that was nice. We devised a way to get a sample of her urine without hurting her because it is red and they need to test it to see if her kidneys are messed up or what. In short they are messed up, but holding their own for now and far down a long list of things we are concerned about now. She is not even close to needing dialysis or anything yet. We try to celebrate these little victories because each one means we are getting closer to taking her home.

1/14/13 at 1125 hrs - Katelyn had rough night. Lots of mucus in her throat and mouth. Resorted to the large hard plastic suction tube, secretions are just too thick. Back on the bilirubin light today as her levels have spiked again. Upped her food intake to 3 CC/ hr.

1/14/13 at 1335 hrs – Posted photos of Katelyn’s wounds under the dressings. I wanted those who were wondering how bad EB can be to a newborn. I also have a short video, but it shows the same areas. With all her crying in it I did not want to freak anyone out more than the pictures alone. She is one tough little cookie. Her crying did appear to have fixed her collapsing lung.

1/14/13 at 2045 hrs - Another rough day for our butterfly. Big scare at 1930 when she turned blue and stopped breathing. Katy noticed her poor little throat was filled with mucus. After they sucked it out she was back to herself. Her heart rate close to 200 since late last night, climbed over 200 for the past 3 hours as well. Her lungs seem to be working well now since her crying during her dressings change. She has been peeing and pooping all day so that is good. Katy and I are a little freaked out at the moment and watching her like a hawk. Hopefully her heart rate will lower so we can get some rest, otherwise it will be a long nerve wracking night.

1/15/13 at 1725 hrs - Some torso dressings changed and more air through her nose. Heart rate came down around 170 and raised to 5 CC/ hr of breast milk. She still has little tremors and looks to be uncomfortable, but we are not sure if it is pain. Bilirubin light removed.

was doing.