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.

Each Pregnancy's different...

is what you hear all the time. Especially from medical personnel, like you don't know that your body feels different. I think they are trained to say this, regardless of how they really feel.

But in all honesty this pregnancy is far different than the others. With the pregnancy before this one, the one that ended all too quickly I wasn't sick at all but my body was going through some serious changes quickly. Then it seemed to end just as quickly as it came and the symptoms disappeared as well.

Rewind to my first pregnancy, I was sick, so sick. I lost twenty pounds in the first month. I couldn't get out of bed, couldn't function and definately did not want to eat. By 4 months it was gone. My belly grew at a slow pace and I only gained in my belly. When I had Brooke (who weighed 7 lbs 15 oz.) my thighs were smaller than they had been before I got pregnant.

Then to my second pregnancy, I was nauseous but not super sick. I carried really low, and felt a lot of pressure down in my pelvic region. I gained the same amount with this child as I did with Brooke. I swore it was a boy! But it wasn't and what a blessing in disguise! Along came Jaelyn. My chubby 9lb 2 oz baby. (thank goodness for meds!) After her, I did not lose the pregnancy weight. I continued to gain.

Fast forward to my current pregnancy. This one is a huge combination of all three previous pregnancies plus some new symptoms. My belly is huge already as well as some other "parts" but I don't feel as though I am gaining everywhere. I was horribly sick in the beginning and it lasted until 5 months. I thought I was never going to get off the meds. I only lost 7 lbs but only because I was on medicine. As of my last appointment I have only gained 4 of the pounds back out of the 7 I lost. I'm hoping the trend of not gaining a lot continues but I also want to keep the health of my baby in mind. I remembered feeling Brooke and Jaelyn both move around 16-18 weeks. By 20-22 weeks you could feel them from the outside. This time I don't feel as much movement. I was really nervous about this when I went for my 20 week anatomy scan. Here the technician explains to me that I have an anterior placenta. In other words, my placenta attached to the front wall of my uterus, therefore creating a thicker barrier of membrane between the baby and my belly which makes the fetal movement hard to feel. What a huge relief!

I feel as though my hubby is cheated! I can feel the movement, but not as strong as with the girls and poor hubby can't feel anything. I know in a month or two that will proabably change but for now it is sort of disappointing that he doesn't get to experience this with me yet. I will say though that it is the weirdest sensation I have ever felt. I can't explain the feeling of what I do feel other than when the baby hits my bladder or whatever other organ it can hit while he's in there doing his aquatic acrobatics, I get a funny "flicking" sensation.

I feel so blessed to be able to carry this baby and to have it be a boy but I never imagined just how different this pregnancy could be compared to the others. My only curiousity is how will labor go this time!?

The Great Name debate...

...is currently going on in our home.

We're having a boy! Why is it so hard to pick out a name? We only had boys' names picked out but we can't seem to agree on one whole name.

Our initial name would have been Rowan Alexander Shreiner.  BUT  I have this "rule" that we can't use names that are already in the family. So I don't want to use Alexander.

So I decided to scratch the whole name and start over. I think this is the hardest decision ever. I know I didn't have this many issues naming my daughters. So why is naming our son so hard!?

We have names we like, but don't seem to jive with Shreiner. We could make it a junior but again, I don't like naming my kid someone else's name.

We have had suggestions of Logan- but that's my sister's dogs name. Landon- my husband doesn't like. Cole or Colton is a no go- again the hubby isn't into them or we know someone who has that name. I know we can't have a totally unique name that no one else has but we want to stay away from people in our circle of family and friends.

I also have a name association thing, if there was anybody in our lives that we didn't particularly get along with or aren't fond of, we won't use their names.

So we're back to Rowan....but Rowan what!? is the question.

Rowan Avery?
Rowan Knox?
Rowan James?
Rowan Darius?

Any suggestions? Any new ideas?

Names that are definately out are...
*Normal everyday names like Adam, David, Ryan, Lee/Leigh, Samuel, Keith, Thomas and Scott.
*Names already in the family, Alexander, Michael, Remington, Nicholas, Xavier, Cooper, Trenton, Stephen, Charles, and William.
*Others off the list are, Marvin, Claude, Todd, Logan, Landon, Kade, Cammeron, vintage names, totally off the wall names and names of objects, seasons, weather etc.

My own worst enemy...

....is myself.

I don't know how to do things "small". When I plan an event, life, work, school, home, etc. I plan BIG. Sometimes too big!

In the last year I have accomplished a lot and I have fallen back on even more. I took on a new job, continued schooling, planned and pulled off my wedding (with help of course but the planning was all me!) all while attending college near finals and bringing the girls home from private school and acclimating to being a full-time mommy again. I also got the girls enrolled in the local school.

Got pregnant, not once but twice. The first pregnancy resulted in miscarriage which turned my world upside-down. I didn't realize it until now how bad if had affected me, my life, my schooling and most of all my job. I became depressed, unhappy with myself and un-motivated. I couldn't focus at school or at work. I fell behind at work because I knew I couldn't fail school. So now I have to play catch-up which is daunting and makes me feel super-inadequate. I hadn't realized how behind I got until the end of last year and the beginning of this year. There are forms due, audits being performed and me going, "Crud! Where do I start, which should I do first!?"

The second (and current) pregnancy gave me new hope and new fear. I was hesitant untill about 12 weeks along about being excited. Now that I know we are having a healthy little boy I am more excited to move on with life. Making even more "risky" decisions to hopefully make our lives a little less complicated (or possibly more...lol) and give me the opportunity to make money to help support our house and be home at the same time.

But what does that mean!? I have to quit my job, get this place in tip-top shape, no more avoiding the annoyances but facing them full forced. It means a little more anxiety for the moment but not for all time. It means I have to get my a** in gear!

If only I had faced the facts last fall, if only I had realized what burden I was placing on myself of being a mom, a wife, a student, a babysitter, a office manager, and a prego! My brain is mush- I forget things constantly. But I have to push forward. I have to get it all done! I have to focus. I have to have faith in myself and my family to help me pull through. I know I can do this, I've done harder things. But I think I may have overdone some things as usual. :-)

Our Gender Reveal

Wow what a whirlwind this last week has been! We decided a few months ago that we wanted to have a party to share the excitement and joy of finding out what baby number 3 would be. I started to call bakeries to see if they would be willing to do a gender reveal cake and found a lady that was very excited about it.

After scheduling the Ultrasound, we made up invitations that read "Pink or Blue, We have no Clue!" and send them to close family and friends inviting them to join us the Friday after our ultrasound to find out the gender of our little one.

Monday we had an ultrasound to check on baby's growth, any "soft" markers (meaning potential risk factors for cleft lip, organ malfunctions, etc) and of course to find out whether it was a boy or girl. But the hitch was that we didn't want to know the gender then and there. We asked the ultrasound technician to find out the sex and seal it in an envelope for us to reveal at a later date.

Then on Tuesday I delivered the results to the bakery and finalized the plans. We decided that if it was a girl the baker would swirl the cake with raspberry flavoring and if it were a boy the baker would swirl it with blue cake batter.

Friday I picked up the cake and the envelope that had our results. The baker had sealed the envelope back up but I was so tempted to look. But I didn't! (I'm really proud of myself for that!)

After getting the cake, attending some appointments, making dinner and tiding up our house. The guests started to arrive.

We had 40 people here! I didn't count them that night and I don't have pictures of them all but it was crazy! (In a good way) We had 19 children here and 21 adults. The children ranged from 11 months up.

After we knew that we had everybody here we decided to start the celebration.

Once we had everybody's attention we started to cut the cake. Brooke and Jaelyn didn't want to watch.

 Once we cut the cake we learned our surprise! It was blue. It's a boy!

We are super stoked to be adding a little boy to our family. Ready for trucks, cars, dirt, t-shirt and jeans. Ready for baseball, hockey and all other little boy games. :-)

Everybody that attended the party made the event so much more exciting. We are thankful to have the support and love from our family and friends who shared the moment with us. Lots of laughter and joy was shared that night. 

Bring on the the next few months! I'm ready for July already so I can meet our little man.

I need your help!

My hubby and I are expecting baby #3 and we need your help. I want bright and colorful bedding and he is stuck on something we had picked out with our first pregnancy that ended in miscarriage. Don't get me wrong...I still like it too but I want to do something different. So I will need you to cast your vote on which bedding you like best. We are trying to be gender neutral...so here goes..


Bedding A- Dr. Suess One Fish Two Fish

http://www.target.com/p/Sumersault-Baby-Bedding-Collection-Geo-Brights/-/A-11289592
Bedding B-Circles
(sorry I couldn't get the image to copy into here so this is my last resort)


and lastly Bedding C- Monkey



Ready, set, vote!!