A Day in the Life: Meet the Sebek's

Hello!
My name is Megan and my husband Chance and I are super blessed to be the parents of our daughter Rowan. Being a first-time parents is hard, not to mention having a child with BA.
Chance and I are both RN's in the ICU, but since Rowan's birth I have only worked a few shifts here and there. Our knowledge of nursing has made it much easier to understand the medical process of BA, but no easier emotionally.
Rowan was admitted to the NICU after birth and stayed for 2 weeks due to some initial issues breathing. Countless lab draws and diagnostic procedures later, Rowan underwent the Kasai procedure at 3 1/2 months old. Unfortunately, the surgery was not a success. Her liver numbers never improved. By the time October had ended, Rowan was experiencing all of the symptoms of liver failure; ascites, inability to clot, severe jaundice, and malnutrition. She was admitted and received FFP, albumin, lasix, TPN, and tube feeding until her gift of life arrived. Ro was placed on the liver transplant list with a PELD score of 32. We watched her condition drastically worsen for 10 days before we received the call.
On November 29th, Rowan received her gift of life.
The ascites returned after transplant and complicated her progression. She stayed in the PICU for a month and was finally released another month later after spending Thanksgiving, Christmas, and New Years there. Going home with a PICC and NG tube was easy for us as nurses to care for, but it sure wasn't fun.
We were settling into life as we know it, until Rowan then was admitted for Autoimmmune Hemolytic Anemia. A month and a half later, Rowan was finally discharged, but we still have no answers as to why she developed that condition.
Ultimately, our lives are scheduled around Rowan and her labs or appointments. When we aren't tied down, we love to spend time together as a family.
We are big on schedules and usually stick to our morning walks and nap routines pretty well.
Every day we thank God for our angel donor. Rowan has taught us to live every day as a gift. We try to keep a positive attitude and a good sense of humor in everything.
If you ever have any questions, shoot them our way!
Megan

www.rowansliverandonions.blogspot.com

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A Day in the Life of the Colby Kids

Hello BA world! Nice to meet you. I'm Blair. I was flattered to be asked by Jen to be a part of this blog and excited to be one of the fabulous families that will be posting here about their BA journey and post-transplant lives. This road we are on is not an easy one and it comforts me to be surrounded by people who, frankly, get it.

As for me, I am a Mom, wife and a photographer. I have been with my husband for about 17 yrs and we’ve been married for about 14 of those. His name is Ron and he is my rock. Ron and I had decided not to have children but my son Lincoln had other plans for us. Oops (a very good oops)! J We had him on March 7, 2006. He was perfect..8lbs 12oz, 21.5”. We fell in love with being parents and decided to have another child. My youngest, Xander, was born on Nov. 17, 2007. He was perfect too. He was 8lbs and 21” long. We were thrilled to have another son. Brothers! Unfortunately, our elation wouldn’t last long.

Since I had gestational diabetes with Xander, the docs had to monitor his blood sugars. He would get poked on the foot periodically to check his level. Our most excellent pediatrician noticed he was a tad jaundice and decided to check his bilirubin, not just the total but his direct and indirect. Thank God for him. He had seen Biliary Atresia once before and as soon as the test results came back he knew what to do. He immediately sent Xander to a GI for more testing. This is where our BA story begins.

As you will see in future posts, my favorite hobby in the world is photography. I documented Xander’s journey with BA and his transplant. I am not as eloquent with words as I would like to be so I’ll let my photos tell you his story…

A Day In the Life::Meet The Golden's

Hello!! We are the Golden’s; a family of four living in Austin, TX. Billy and I have been married for 6.5 years. I am Registered Nurse working part-time every weekend, so I can stay home full-time with the babies. I currently work in Surgery at a Trauma Center. When I am not trying to keep the house at a livable level of messy, I enjoy crocheting. Actually, I am slightly obsessed with it. Weston received a few blankets from Project Linus while in the hospital, and I was so touched by the kindness and generosity of the “blanketeers”. I taught myself how to crochet via YouTube and have been able to make a few blankets to donate to our local chapter.

Billy is the Technology Coordinator for a middle school campus and also teaches a couple of technology based electives. He is a former high school and middle school coach. Billy is a “good-ole Texas boy” at heart. He loves sports, mainly Texas Longhorn and Dallas Cowboy football. When he actually has free time, he enjoys playing golf.

Our schedule is a necessary evil and a blessing in disguise all at once. Billy works Monday thru Friday and I work all day Saturday and Sunday…leaving us very little time together and as a family. Our closest family member is an hour and a half away; so we often feel isolated. But, being “free” all week has been instrumental in getting Weston the care he needs. When you have a sick child, the doctors tell you when they want to see you next; they don’t ask what works with your schedule. When Weston was in the hospital, our opposite schedules allowed one of us to be with him at all times without having to be excessively absent from work.

Emily, 3 years, is our oldest. She goes to pre-school part-time. You’ve never seen a kid love school as much as this one! When she is home with Mama and Weston, we try to keep her active booty busy with swimming and cheer/tumbling lessons. Emily is the best big sister you could ask for. Even at such a young age, she is very sensitive to the fact that her brother was sick. She’s made many trips to the hospital to visit and was a super-star during the two months that our family was torn between Houston and home. She is definitely a handful at this age, but we can’t imagine life without her.

Weston, 13 months, is our Little Man. He had his Kasai at 6 weeks of age. It stabilized his liver disease for about 2 months. By the time he was 5 months old, he was in full blown liver failure. He was admitted to Dell Children’s Medical Center (Austin) and then to Texas Children’s Hospital (Houston) to receive TPN and Albumin in January until he received his transplant. The morning of January 28^th, 2011 will forever be burned into my memory. I remember it, like I remember the day I was married and the days my babies were born. It was the morning that we got “the call”. We were still inpatient, so it was more like a surgical visit. That evening, Weston received a whole liver from a donor on the East Coast. He is B+, rare. Not only that, but the donor was in an outside region. SO many things had to line up correctly…and they did.

His post-transplant recovery was a little bumpy. Due to pre-transplant fluid imbalances (from liver failure) and the size of his new liver, it took about a week for him to come off of the ventilator and out of PICU. He’s had temporary feeding tube issues, wound dehiscence, and a myriad of contagious illnesses since, but he is HOME. To look at him, you would never know this Little Man has been through so much. His eyes are bright, cheeks are plump and rosy and has a roly-poly tummy to go with it. He is so happy and his smile will just melt your heart. He just celebrated his first birthday and is learning to walk. He loves to snuggle, play and throw food on the floor. He is obsessed with Shrek and Yo Gabba Gabba; we watch them almost every day. Little Man loves to eat! Milk and veggies are his favorite things. He is very cautious of his actions…but Billy and I still think there is a future Texas Longhorn Football player lurking inside of there.

I often think about our Donor Angel and their family. What they must be feeling… Weston’s donor has become part of our family. We celebrate their life and gift every chance we get. We gave him life, but they gave him a second chance.

Until next time,

Ashley

Growing Up Golden

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A Day in the Life of the McCoy's

So, I’m up next for introductions! Here goes….I’m Jeannie and I have two beautiful little girls and a great husband. Our oldest daughter, Ember, had BA. (Or is it has? I always fumble with that since she has a new liver! J ) She is SO in love with her little sister Autumn. And let me tell you, having two little ones 17.5 months apart is tiring at times. It is also amazing. As for me, I am a stay at home mom who is NEVER home since school started. For me, not the girls. They go to preschool so I can go to school in the hopes of getting into nursing school one of these days! I have been a stay at home mom since Ember was 8.5 months old, 2 months after her transplant, and it has been the best decision we could have ever made for our family.

I can honestly say that I am a better person for having both of my girls in my life. With Ember, I have learned more medical terminology than I already knew. I have found an inner courage, and peace, that I needed to get through the many days we were in the hospital. As well as some patience to not go off on random people in the store when they would tell me that she had such a beautiful “tan”! I have learned that you are never too young to have a great sense of humor. Despite everything, she laughs and giggle at the smallest things and then it makes me laugh. We all need a laugh sometimes, why not take after a 3 year old when you do it? With Autumn, I have learned the deepest sense of wonder about the world around me. I have also learned that sometimes you just need to yell at things to get them to work. Again, I have learned even more patience to not go off on random people, especially when I was preggo, when they would ask if she was going to be “normal” since her sister wasn’t! No, she isn’t normal. Normal is over rated! I have also learned that biting is NOT o.k. Now, if she would learn it, we would be good!

I hope that those of you reading this as well as other posts on this blog find a sense of acceptance, familiarity, and hope. This journey will change you and those close to you. It will be for the better, but some of it might scare you a bit. As Amber posted earlier, I also know my kids better than most parents know their children. Not just my BA baby, but both of them. That doesn’t mean that there aren’t times that I don’t second guess myself. There are LOADS of those moments, but that is what being a parent is all about. Well, that and showing embarrassing pictures to their boyfriends later in life! One piece of advice I always give new BA families is to not be afraid to speak up. Doctors and Nurses are people too and you have a right to have their full, undivided attention when it comes to the care of your child. If you need help speaking up, get someone who can help you do that. (Raises hand – pick me! Ooohh! Me!)

Liver disease changed our lives and will continue to help form our lives as both girls get older. Our girls will grow up knowing the true meaning of giving without hesitation. Ember received her second chance at life and we live it every day. I have always said that until something tells me that what I am doing is wrong, we are going to let her live that life. That has been especially true ever since her little sister came along. When there is a bump in the road, we manage. We have to. There is no second choice when it comes to our kids. They are truly our future and I am so very glad to be part of it!

-Jeannie

Ember’s Journey started here: www.caringbridge.com/visit/emberzstory

Follow me here: www.diaryofjeannie.blogspot.com

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A Day in the Life of the Levy's

So I thought I would take a moment and tell you a little bit about me. My name is Amber and my son, Dylan, has BA. I am currently barely holding on to my twenties. I recently after years of back and forth made the plunge into motherhood for the second time. Let me tell you this was not an easy decision after what we went throught the first time around. Our new bundle of joy, Tegan Celeste, is due at the beginning of next year. I have no spare time so I really don’t have any hobbies unless you count memorizing lab values and medical terminology. I have not worked full time since Dylan was transplanted 7 months ago, but love being a dental/oral surgery assistant and plan on going back as soon as possible. Sometimes I forget that I am my own person. Once Dylan was born I became Dylan’s mother and Amber faded into the back ground, but life is funny that way.

Ask anyone and they will tell you that a baby will change your life forever. Having a “sick” baby not only changes your life but it flips it upside down and inside out. I have no idea what life was like before my son. For the past six years we have lived in and out of hospitals. We have seen his doctors more times than I could count. I have dosed and given an obscene amount of medication and held him down for labs and IVs more times than I want to remember. Events like this change you. They change your inner workings forever.

It’s not all bad though, some of you reading this may just be starting your own journeys. Know this…I know my son better than most parents know their children. I never take a moment for granted with him. I have learned to choose my battles and I never let the small stuff get to me. Dylan knows without a doubt that I will be there for him no matter what. When you watch your child fight for their life and you are there every step of the way with them the bond you form is SO strong. I can honestly say that I feel blessed to be his mother and even more blessed that I was chosen for such a job. Dylan has taught me more about life than I will ever be able to teach him.

Living a life with liver disease is not an easy task for anyone in the family and it is most certainly not glamorous. Relationships are tested to their limits, but you do find out who your true friends are. Keeping a journal is my way of looking back and remembering. Seeing how far we have come in the times when I feel defeated helps me to keep moving forward and that is what we have to do. We have to keep moving forward and take it one day at a time.

-Amber

www.dylanwlevy.com