Ode to a Father

During my pregnancy, Tater never showed any fear or anxiety for the upcoming arrival of our baby. I, on the other hand, was a hot mess. There were many many nights that I would wake him up and ask, "aren't you worried?" Whats going to happen if I don't feel instant love for my baby? What if she comes out and she's not what we expect? What if she doesn't like us? What if I'm not a good mother? What if... What if... What if...

There wasn't a night I wasn't completely consumed with anxiety over what was to come. Even though T had school the next day and needed his sleep, he would just simply turn over, rub my arm and tell me it was all going to be okay. Sometimes his calmness bugged me to death! Why wasn't he stressed like me? Why wasn't he having the same worries I was having? Then sometimes his calmness did just that for me...it calmed me. It reminded me that this is what we wanted and that I wasn't going to be doing any of this alone. That no matter what, whether she liked us or hated us, we were doing it together.

The night before my scheduled c-section, after dinner with our parents, T and I were laying in bed and I remember him saying how excited he was for tomorrow. I loved that he said that! I'm sure a lot of first time dads show fear the night before their lives are to change forever, but not Tater. He once told me that becoming pregnant was the one thing in life he was the most sure about. He's always known the type of dad he wanted to be, the type of dad I wanted him to be, and the type of dad his child (future children) deserve. He was truly excited for G's arrival because he knew that being her dad was going to be the best role of his life. He also knew he was going to be good at it because he was prepared and because it was something he so desperately wanted.

To say I am lucky to have him as the father of my children is putting it mildly. I am so thankful for him being such a hardworking, loving, and attentive father (and husband.) He inspires me daily while pushing me to be a better mother.

Thanks babe for all you do! Love- Mal and Your Gattlyn Girl xoxo

PHACE Syndrome

What is PHACE syndrome?
PHACE syndrome is the association of a large hemangioma usually on the face or neck, in combination with one or more other abnormalities. Every infant diagnosed with PHACE syndrome has different medical needs. Some have mild symptoms while other have more severe symptoms. PHACE syndrome is uncommon but may have been misdiagnosed in the past. It affects girls nine times more often than boys.

PHACE is an acronym that refers to a group of abnormal medical findings, and when these occur in combination, the diagnosis of PHACE syndrome is made.

PHACE defined:
Posterior fossa- These are brain malformations that are usually present at birth. These brain malformations do not form after the infant is born.

Hemangioma- The hemangioma usually covers a large area on the skin of the head or neck (greater than 5 cm). The term "segmental" is sometimes used to describe these hemangiomas.

Arterial lesions- The abnormalities of the blood vessels in the neck or head.

Cardiac abnormalities/aortic coarctation- These are abnormalities of the heart or the blood vessels that are attached to the heart.

Eye abnormalities.

**********************

This was the best definition I could find of PHACE. When G was diagnosed we learned she had other problems we weren't aware of. Part of her left side cerebellum in her brain didn't fully develop. This part of your brain is primarily motor control. It contributes to coordination, precision and accurate timing. Obviously, we began to worry about her physical development.

Also, we learned she was born without her carotid artery on her left side (everything deals with the left side of her body.) You know how you can feel your pulse on both sides of your neck? Well, you can't feel G's on her left side because she doesn't have one. She's completely missing her artery. G runs the risk of strokes and seizures because she doesn't have the full blood supply to her brain that the average person has.

We don't know what the future holds. Since PHACE is fairly new to the medical world there's no way to tell what will happen (or what we can expect) in her future. She is closely looked after and monitored by her amazing team of doctors here at UK hospital and still at Cincinnati Children's. Despite all of our worries and concerns, those who know G personally know what a happy, well- adjusted child we have. Meeting her you would never know the medical issues she has. She is so happy and such a joy to be around. Lots of children with PHACE have it much worse than G and I pray for those precious children daily. I also express daily gratitude for the healthy happy baby girl we have. Thank you Gattlyn girl for joining our family! We love you!

PHACE-ing our Future

I have been wanting to write about this for a long time, but I could never find the right words. First, it started as an issue of privacy. Why would I want everyone to know about my daughter's health issues? But as time went on it turned into an issue of just that...time. Suddenly I found myself wanting to voice my opinions (triumphs, frustrations, etc), but I didn't know how or where to start.

I want this blog to be an honest history of our lives so I want to share my honest feelings regarding all aspects of our lives. If I weren't being honest then whats the point of this blog? Also, I want other PHACE families going through what we go through to be able learn from us or share to us their own experiences.

So, I want to start at the beginning. Warning: this will be long and possibly consist of more than one post. I have a lot of catching up to do. This post is about the moment in our lives when we went from facing our future to PHACE-ing our future.

Pregnancy-

My pregnancy was happy, normal and healthy. At 20 weeks, the ultrasound of G showed a "bright spot" on her heart. We were told this was usually a sign of Downs Syndrome, but since she didn't have the other signs (that normally coexist with this) we were not to worry. We pushed it from our minds (as much as first time expecting parents can) and went on with the pregnancy. To this day we still don't know if the "bright spot" was simply just a fluke or some kind of sign of what was to come.

Birth-

G was born one day before her due date. She was loud, fat and perfect. I will never forget the moment I first saw her and the indescribable feeling I felt. I still get butterflies when I think back at that moment. Watching Tater become a dad in a matter of a second is another mental image I could never forget. She was so beautiful and seemed to check out healthy except when she cried an all white spot would appear on the left side of her face. It was odd to me and I can remember thinking it looked like Africa. Everyone (including doctors and nurses) told me not to worry. They explained it as "typical newborn splotchiness." I just knew that wasn't the case. I just knew it. Call it mother's intuition or maybe it was the Lord's way of preparing me for what was to come, but I knew that spot meant something was wrong with my precious baby.

If you look closely you can see the white spot stand out among her pink skin.

1 Week Old

I still remember with perfect clarity the day my pediatrician told me to "sit down." Those are words you never want to hear from anyone let alone a doctor (and especially only one week from having a baby when your hormones are raging.) She told me she suspected that her mark (which had turned a vibrant red color by now) was in fact a hemangioma. Normally they are harmless and are left alone to do their thing and go away on their own. However, G's was abnormally large. It covered most of her left side of her entire head. Starting at the back of her scalp, it covers the left side (including her ear) and down to her face. It covers her forehead and down to her eye (covering the eye lid.) The doctor told me there was nothing to be done for her. She said because of the size of her hemangioma we were to prepare ourselves for our daughter's face to become permanently disfigured and for her to possibly lose her eyesight in her left eye. We were to stand by and watch the damage be done without doing anything for her.

On the way home, I had to pull over from crying so much. I said a fervent prayer pleading with the Lord for us to find another way to help her.

Months 1-6

After that first appointment, it wasn't long until I got an answer to my prayer. I knew my daughter's fate was not going to be the horrible picture that doctor had painted. I refused to take her answer as the last word. I knew in my heart the Lord had other plans for her. Luckily, my step-dad being a pediatrician suggested the drug propranolol. Propranolol is a beta-blocker and it works by relaxing blood vessels and slowing heart rate to improve blood flow and decrease blood pressure. Only recently it has been discovered in the help of improving hemangiomas. This medicine has been such a blessing in our lives. G has been on it since she was 4 weeks old. Her hemangioma now looks as it did when she was started on the meds. The drug has "frozen" it in time. Actually, it has lightened up tremendously.

Meanwhile, G was having some heart issues as well. Because of the "bright spot" we saw on her ultrasound and the murmur that was heard when she was born it wasn't long before she was referred to a cardiologist. After lots of tests and evaluations she was diagnosed with an acute coarctation of the aorta and leaks in her mitral valve. Needless to say, this was just more worry added to the pile (it was growing more and more.)

The dermatologist she was seeing decided that her situation was just a little more than he could handle. It was time to refer her to the big leagues. I am forever grateful for his inspiration to do this. Finally, G was headed for an appointment with a hemangioma and vascular malformation team of doctors in Cincinnati. They are amazing! I highly recommend them to anyone seeking answers regarding hemangiomas or vascular malformations. This referral was the turning point in her life. After MRIs and countless other tests things were finally put together. Her puzzle pieces were beginning to fit. At 6 months, G was officially and without a doubt diagnosed with PHACE Syndrome.

Growing UP

We finally did a very grown-up thing that made us feel very proud and sick all at the same time.

We bought a car.

Proud because we did it all on our own. Sick because we bought a car.

However, we needed one very badly. Those who know what we were driving knows how bad we needed one. We did our homework, shopped around and settled on a beauty. A 2010 Ford Fusion. She sparkles on the outside, (and to my liking on the inside too) she does cool things, and she runs! Couldn't ask for anything better. We have yet to name her but are open to suggestions.

Yay for us and "Hello Beautiful!"

In a Nutshell

So, I feel like I have so much to catch up on and I just don't know where to start. I think the only way to really catch up on our life without writing a novel's worth of information is just to put all the important stuff in a nutshell. Welcome to our nutshell...

-G started to walk on her first birthday (literally on her birthday at her party.) Since then she hasn't stopped. Actually, now all she does is run. You would not believe all of the "pity" looks I get from people while I'm rushing by them trying to catch her. I have saved her from a car, many walls, a large hole, dogs, strangers, a fireplace and steps. I'm starting to seriously consider a leash. This pic was taken on one of her escapes. Yes, those are parking lot lines. Don't judge me.

-Tater works, goes to school and works some more. He is super busy now. We hardly ever see him. That's all I can say about this because it sucks. This is me throwing a pity party for myself. And then this is me stopping because I'm counting my blessings.

-We love Lexington. Love, love and more love.

-G is talking now. She can say bye-bye, mom, da-da, night-night, thank you (sounds like shank choo,) uh-oh, more, me and my favorite... (note sarcasm).. NO.

-We are in an awesome ward ( a part of our Church) with awesome people. I'm serving with the young women and Tater is teaching Sunday school.

-Most importantly, we are happy. I know that sounds so cheesy, but we are in such a happy place in our life right now. I don't want to jinx anything (knock on wood...har har) but we just can't complain. Maybe its because life is going to take a huge new turn in only a year (when T graduates) so we are trying to just enjoy life as we know it right now. Or maybe because we've hit a nice lull in life with no serious concerns or worries. Whatever the reason, we aren't complaining! Things seem to be in place and where they need to be. I love my life, I love my family and I am so grateful for my blessings.

Commitment

I've decided to recommit myself to our blog. I've realized it isn't fair to our little family if I don't record now all that we've been through. One day I know I will want to look back and read about all of our trials, our blessings, our laughs, our tears, our ups and our downs. Now, I've said this all before but I'm really hoping this time it sticks! I've made the goal to blog once a week.

Time to be a Wild Cat!

I can now officially announce that the Roan family will be moving (yet again) to the bluegrass state! Lookout Lexington, Kentucky here we come!

Tater was accepted as a transfer student to University of Kentucky's law school. We are so proud of him. On top of that he will be able to work with the football team there as well. Needless to say, he is super excited.

Though I am very excited to be making this move and I dreading the actual "moving" part of it. We only have a few weeks to pack up all of our belongings and trek across state lines. Blah! I despise moving. Everything about it. Yet, we do it all the time. Somewhere deep down I must have a goal to live in as many US states as I possibly can. Kentucky will be state #7 for me. We have both sworn that this will be it for us...no more moving! Well, until he's done with school of course. Then its off to the next one!