'Tis the Season

To be thankful, grateful and humble.

We are all of the above!

We are...
Thankful for the opportunities that have been given to us, a new job for my husband (with less pay but more experience in the direction he wants to take his new career).

Thankful for two beautiful girls who are so full of love and stubborn as can be. Which means they will be successful in the future.

Thankful for a little boy who has shed new light into our lives and opened our hearts to many others that we may have never known. Some very special families out there, doing wonderfully good deeds!

Thankful for a home, food, and mostly LOVE!

We are...
Grateful for caring people in our community. Those who gave in our time of need and uncertainty.

Grateful for friends who took time out of their busy lives to set up fundraisers and offered their assistance.

Grateful for our family for taking care of our girls while we were in the hospital, visiting and donating supplies and money to help with Rowan's care.

Grateful for our parents for ALL that they have done. From visiting us in Philadelphia, to helping us purchase meals down there, giving us financial, moral, and unconditional support. For hosting a wonderful dinner and auction to raise funds for our sons ongoing medical expenses and traveling costs associated with tests and care.

We are...
Humbled by strangers support.

Humbled by the donations recieved.

Humbled by the love that has been shared for our son and family.

This season, we truly are THANKFUL for all that we have and those that we share our lives with and ALL that we have.

Happy Holidays!

Challenges

This week has proven to be a little stressful. I think I'm handling it well though. Let's start with the broken stuff:

My hood popping cable (I have no idea if there's a technical term but that's what I'm calling it) is broken. We figured this out by needing to jump start my husbands pick-up because the battery is dead. (mind you, he just replaced the shifter forks in the tranny in this truck that sat for the last year due to being broken down)

Our water pipe to our toilet started leaking due to a break near the shut off valve. Luckily the leak was after the valve so we were able to turn it off until my husband was able to fix it.

Then our dishwasher died, it's been on the brink of destruction for awhile now but we were trying to milk it for as long as possible.

My husbands daily driver truck has been having issues with shifting between first and second gear and yesterday morning it decided get stuck in neutral while he was trying to get on the ramp to the highway to work.


Now onto the children:

Since we brought the girls home from Milton Hershey School they have been a challenge. They tend to disregard the rules, ignore the consequences of their actions and push limits to the end. I know that some rebellion is to be expected and that they have had to adjust to a lot of new things but I feel as though all these new things are good things. Things they should be thankful for and cherish (although I know they are too young to understand what "good" is). I feel as though I'm beating a dead horse though. My youngest daughter is starting to really act out. She's becoming physical now and physical with her sister (which isn't ok) near her brother which is really not OK with me. Today she was fighting with someone at the bus stop. She's grounded for a month from her actions all week. I feel like I'm fighting a losing battle right now. They won't keep their rooms clean and I'm not talking spotless, I'm talking mountainous piles of clean clothes, blankets, pillows, etc on the floor. Enough to break your leg if you weren't careful.

I know things take time and these poor kids have been through the mill, but everything I have done for them has been for their best interest. I have lost my temper with them more times than I'd like too and yelling at them is defeating everything I have been working on with them. I realize that with the addition of another child there was going to be some animosity but it's not directed where I thought it would be.

My schooling:

I'm struggling, I'm not making enough time to study. When I do have time to study, I would rather sleep because I'm exhausted! I don't learn well on my own unless it's something that interests me and I'm doing horrible with the exam portions too. I'm going to hang tight though and do my best until December. Then I may take some time off. I'm worried this will mess up my financial aid but something has got to give.

Breastfeeding (err-bottlefeeding breastmilk)

I'm over pumping, I can't keep up with the demand of having to pump every three hours plus the time it takes to feed Rowan every three hours. Between feeding, pumping and washing pump parts I can't get anything done. I have a stash of breastmilk in the freezer and have been supplimenting with formula so I will give Rowan breastmilk as long as I can. I will only pump now until the supply runs out.

Rowan:

He's adorable! I love him to pieces. But I'm afraid of his next phases/trials with EB. I look at his adorable face and I just ask myself why. We have been doing some trials of having his hands and feet unbandaged. His hands are doing extremely well. There is no webbing and the skin is in tact. His feet however are starting to break down again. I can see his heel (the one that has constantly given us issues) is getting agitated and his other ankle is starting to blister as well so the bandages will go back on tomorrow. I'm also concerned with his penis. I believe there is a blister on the healing skin from his circumcision. Although I can't be sure. Sometimes I'm sure it's a blister and other times I'm not so sure. I don't want to leave it alone if it is (because it will grow) but at the same time I don't want to mess with his penis for nothing. Ugh!!! It's so frustrating!


Mom and dad: (As in my husband and I):

We are doing good. We are stressed as life is constantly challenging us with new things and pushing us harder. I'm sure there is a lesson in all of this but I can't even begin to see it. Maybe I don't want to or maybe I just don't have the clarity but hopefully someday it will make sense. We are holding out for some positive news in the future that will hopefully relieve some stress but for now we sit back and enjoy the ride even if it's too bumpy to enjoy.

Biopsy results and updates.

So Rowan's biopsy results came back inconclusive. It seems as though his biopsy may not have been done correctly. It's sad, because he will wear his scars for the rest of his life for a test that wasn't able to determine his type. I have been told by other "EBers" (those that are involved with, experience it or have children with it) that it is common for the results to come back un-determined but it doesn't make it less frustrating.

To know the type would give us an idea of what to expect but since EB is so varying, you can't really rely on the type anyway. So regardless of knowing what type he has, it's still just a waiting game to see if his skin remains the same, gets worse or gets better.

We hope and pray for things to continue on the path it's been. Things have been good, less nerve racking and less time consuming. Our feeding ritual is a pain. I pump and feed, trying to stay ahead so that in a month of two I can give up pumping altogether. It's time consuming and frustrating when I don't feel like I'm not supplying enough and I'm sore.

Today I tried to actually breastfeed him (again), he latched really well to the one side and nursed for a little and then fell asleep. When he woke up again I tried the other side but it was a no-go. I'm not sure that he will ever nurse exclusively (nor do we know if his mouth will handle it either) but I will keep "testing" the waters. It would be so much nicer if I didn't have to continue this routine.

We started to supplement formula one feeding a day. I'm hoping this may give him a boost in his weight since he only gained an ounce in the last 3 weeks and give me a break too.

Rowan's blisters and wounds have all healed minus superficial wounds he gives himself when he's unbandaged or from being handled more frequently. He gave himself a blood blister the other day on the heel during bath time. It was the first blood blister I have ever had to pop, but I did it! It is healing well. I continue to be excited for fast healing.

His hands look ten times better too. We unbandaged them last night (they were bandaged due to skin growing between his fingers that appeared to be webbing) and they looked "normal" so we are trying the unbandaged hands again. His feet we wrap to avoid trauma during kicking and to protect his new skin that is still "growing". I hope to find a way to have them out in the near future as well. Maybe some slippers or cushioned socks!?

We should soon be having a private duty nurse to come a few days a week to help me with bathing and bandaging him during the day so that our evenings can be a little less hectic with trying to do everything after my husband gets home from work. I sometimes feel foolish for needing "help" but also realize it's not a bad thing and it will make things a little less stressful.

We go to Hershey at the end of the month to see his dermatologist again. She wants to see how he's doing and perform the genetic testing to try and determine his type of EB from that. I hope to get positive results from that and more answers to our questions.

It's hard to imagine what may be in his mobile phases to come but I pray that his skin is tough and can withstand rolling, crawling, and eventually walking.

Answers.....to many questions

I have had to answer many questions since Rowan was born. So I have compiled a list of questions and answers so that maybe if you have a question there is an answer on here.

Q: Is it contagious?
A: No, EB is genetic and cannot be spread to others through contact.

Q: Will he grow out of it?
A: No, EB is for life. It doesn't go away.

Q: Will it get better?
A. Some cases get better as they get older, but they can also get worse. Every stage in life is different. When he starts to crawl we will have to wrap him to protect him and when he starts to walk we will see if his feet get more tough or break down.

Q: Are there any medicines for it?
A: No there aren't currently any medications to help with EB itself, but many people with EB must take meds for pain, use antibiotic creams and take antibiotics to fight infections. Their bodies can also become immune to antibiotics if over used too much so most care is focused in preventing infections in the wounds.

Q: Is there any treatment for it?
A: There is currently research going on to treat EB. The most severe cases can undergo a Bone Marrow transplant which introduces new genes into the body that help teach the body to make the missing connective tissue. The procedure is tricky though, as the recipient must have a match, and be healthy enough (which the more severe cases struggle with staying healthy due to sepsis and other infections) to undergo immune suppresent drugs so the body does not reject the BMT.

** Please note that I am not a professional- just a mom trying to spread the word and wisdom I have gained regarding EB.**

A walk through of a day in CHOP...

I know this is a little late..but there are things I'd like to share. So many people have questions and I figured if I blog, then they will get their answers. So pardon my tardiness but I will get the entire story out, eventually.

A day in our lives at CHOP consisted something like this.

6-7 am- Wake up, Derek would go find towels/ wash cloths so we could shower. He'd go shower and I'd pump. (One morning Derek went to do the laundry while I cleaned up etc)

7-8 am- We'd pack up all our bags, seperate the clean and dirty clothes, load everything on our "hobo cart" (a stroller/cart thing that we found in the parking garage the night we arrived at CHOP that we used to tote all our belongings around) and take the cart to Rowan's NICU room. When we got to the room we'd put on a gown and gloves, push the cart into his room and then help feed him, change him, hold him etc.

8-9 am- the Attending Physician would come around and get information/updates from the nurses, speak to us about any upcoming tests or returning test results, procedures and ask us if we had any questions. Then he'd give us a run-down of the discharge plan.

9-11 am- I'd pump again. We'd request a room for the night. We'd have breakfast down at the cafeteria and buy extra things for snacks/lunch. (We never ate lunch down there- actually most of time we didn't eat anything for lunch at all)

11-5- We'd visit Rowan, do research on the computer, ask lots of questions, meet with the dermatologist, the lactation consultant, I'd pump, we'd feed Rowan, get instruction on how to bandage, do the actual bandages. By Tuesday we started doing the bandages without the nurse because they were pre-occupied with another baby and we got impatient. Then we'd get our sleep room assignment for the evening. We'd sometimes go take a nap or just go relax for awhile. I was retaining lots of fluid in my legs so I had to get them up as often as possible. The fluid actually started to seep out of my legs. :-/

5 pm- throughout the night- We'd spend as much time in the NICU with Rowan, I'd pump every 3 hours (except one 6 hour break during the middle of the night) and sleep, Derek would sleep and occasionally take the milk to the NICU for Rowan. I usually went though because then I'd get to feed him or check up on him and watch him sleep.

The next morning the entire process would start again. By the third night we had a routine, I would scarf up towels before we went to bed and extra pillows so I could prop up my feet throughout the night. We even watched TV the one night. :-)

I think the most scary part of being at the hospital was the fact of not knowing what the next step would be and whether or not we would get a room for the night and would have to spend big money at a hotel and not be right down the hall from our son. The other scary part was that after a few days the routine became almost like second nature.

The day we were told that we'd be discharged was sort of surreal. We were so excited but also scared as we weren't going to have doctors and nurses a hallway away anymore.

Rowan's Story

This is Rowan. Born a healthy, seemingly normal baby on Friday July 6, 2012 at 3:23am. But within 12 hours after being born, strange blisters started to appear on his feet, hands, ankles and wrists. When the nurse pulled the bandaid off his foot, his skin peeled off with it. I knew something was wrong. But I didn't know WHAT was wrong. Around 4:00 pm when the doctor came to take him to do his circumcision I questioned the blisters, after looking him over she decided to hold off on his procedure. They took him back to the nursery to take blood and call the neonatologist in to examine him. Around 8:00 pm they brought him back to my room so I could feed him and visit with him for a little. At 9:00 pm they took him to the NICU and put him into isolation. They weren't sure if he had a staph, bacterial, or viral infection. Every several hours I trekked across the hospital to try and breastfeed my baby. Most of the night he refused to eat because of the blistering in his mouth.

On Saturday morning I was taken into surgery to have my tubes tied. I was still fairly numb from the waist down when the dermatologist and neonatologist came to deliver us the news we dreaded. Our son was diagnosed with Epidermolysis Bullosa. A rare skin condition that is caused by either one or both parents passing on a mutant gene that affects his body's ability to make a protein called collagen 7 that "glues" his layers of skin together. Any type of adhesive can pull the layers apart and any type of friction to his body either by his own body parts rubbing together, clothing rubbing on him or anything course or slightly abrasive will cause the skin to break down with blisters or be rubbed off creating an open wound.

The doctors explained to us that they were going to transport our son to the Children's Hospital of Philadelphia (CHOP) where further testing and specialized care could be given to our son. They told us they would be arranging transportation immediately. Probably by ambulance. I broke down, sobbing, they were taking my baby to another hospital, 2 hours away and I wasn't even able to move my legs since they were numb. I sobbed because my son would never be a "normal" boy. Never able to play contact sports or be a rough and rowdy kid. I sobbed because I was scared and angry and felt like I was selfish for wanting another child and wanting my little boy. But did I ever stop and ask for a healthy child? I took it for granted that I already had two healthy girls, who would have thought I would have a child with special needs?

My husband and I were devastated. I demanded to be released from the hospital so I could go where my son was. We called family, we cried and we embraced ourselves for the unknown. The nurse brought a wheelchair in and took my husband and I down to the NICU so we could visit with Rowan before he left for CHOP. We found out that he would be airlifted to chop instead of driven there. We were scared. His face is perfect, his torso had minimal irritation but his hands and feet were blistered everywhere.

Our family came to be with us and say, "see you later" to Rowan. Then the paramedics from CHOP showed up to prepare my little boys flight to CHOP. 

My family, husband and I were taken back to my room, we packed our things, ordered dinner, and waited for my discharge papers. We got a call about 20 minutes after the helicopter left to say that Rowan had landed safely at CHOP and was already in a bed. They said he was quiet the entire ride there until they landed and turned the helicopter off. Then he cried. (They told us he would probably fuss during the ride) We were relieved to know he was there safe and sound. But our next chore was to get there. We didn't leave my birth hospital until after 7 pm. We went home, repacked our bags, dropped things off and printed off directions to CHOP. I was in pain, my stomach was crampy from giving birth, and from having my tubes tied but I didn't care. I wanted to be with my baby.

We got to CHOP around 11:30 pm on Saturday night after making a pit stop for my pain meds (thank God for 24 hour CVS pharmacies) We found our way to our son, got filled in on his condition, had a mini tour around the NICU and were given sleep chairs in what seemed like a storage room in another NICU unit around 1:00 am. The next morning we hunted down towels so we could shower and packed up our things since the sleep rooms at the hospital had to be evacuated every morning by 8 am. I had only had about 4 hours of sleep since I woke up every 3 hours to pump and deliver breastmilk to Rowans room.

The next day was a blur, we met with CHOP's dermatologist, all adhesives had been removed from his skin and his wounds were wrapped up. She informed us they had run more tests on him to rule out any kind of bacterial, fungal or viral infection. They had swabbed his blisters and sent them off to be biopsied and that they wanted to perform a skin biopsy on him on Monday to be sent off to to Stanford University to be tested for which type of Epidermolysis Bullosa Rowan had. The test would take 6 weeks to perform. We wanted to know if he'd have to stay at CHOP for that long. They said they didn't think he would have to stay long but didn't tell us what that meant.

Every day down at CHOP we got a better idea of what our sons special needs weere, but we had so many questions and we wanted to go home. The nurses taught us how to bandage his wounds, what signs of infection to look for and how to handle our little boy. Everytime I looked at him I cried. He was so helpless but also so dangerous to himself. My husband and I cried just about every night with the overwhelming task that lay ahead of caring for our boy, trying to understand why we needed this challenge in our lives right now and how we got picked to do this job. We love our little boy but we hate E.B.

We were given the all claer to go home on Wednesday July 11, 2012. Our son was almost a week old already and we were excited yet scared to go home and do this task on our own. Rowan makes it easy though, he is such a good baby, he's adorable and sweet and the bravest little boy I have ever met. I'm sure someday we will find the silver lining in this adventure but for now we cope day by day and love our son more and more.



A babe is born

As I approached the final two weeks of my pregnancy I was becoming more and more anxious to meet my little man. I was having dreams about who he'd look like and how big he would be. I fantasized about going into labor early due to being in so much pain and discomfort due to swelling and being 9 months pregnant. Then on Thursday, July 5, 2012 (my 39 week exactly) my water broke. I was excited yet calm as I knew I would be having a baby in the next 24 hours but I wasn't contracting at the moment so I knew I had time to pack, clean up my mess, shower and leave for the hospital. Derek and I took the girls over to his parents house to wait out what could have been a long wait.

When we got to the hospital, there were several other laboring women there. Since my labor wasn't really progressing I was put on the bottom of the list of priorities. My husband and I sat in the small triage room from 6:40 pm to 1:45 am. By midnight I started to contract....uncomfortable but not unbearable. By 1:30 I was in severe discomfort and ready for my epidural. I was only 5 cm dilated though so the staff took their time. I instructed Derek to call his parents, my sister and my mom and tell them to head in so they didn't miss the baby being born. Brooke and Jaelyn had both decided that they wanted to be there for the birth of their baby brother.

By the time they got me in a labor and delivery room I was in severe pain, contractions right on top of each other. By 2:30 am I was numb from the epidural and happy as a clam. By a little after 3:00 am I was ready to push. I pushed for 11 minutes and delivered a beautiful baby boy at 3:23 am Friday, July 6, 2012 weighing 8 lbs 11 oz and measuring 20 3/4 inches long. We named him Rowan Avery Shreiner. He cried, but not for long. Everybody was so excited and we all took turns passing him around. Soon after he was born he was nursing like a champ and beginning his new life as a little person.