Friday, July 31, 2009

In Other News

Today's newscast is brought to you by 10 tiny, cute (albeit crooked) toes.

Sometimes I feel like my life is a 9pm newcast. Goofy weather man included. If you've met my husband you know what I mean.

In the endless barrage of doctor's appointments and specialist vists I feel like I'm in a constant state of "Extra" editions or "Investigative" reports. You know all the stuff you really want to see after they cover the pitiful economy, who robbed a bank, who got bailed out this week and the fact Obama, in all his esteem prefers Bud Light.

So Today's Top Story:
Yesterday David and I went to my regular OB for a scheduled checkup and a follow-up on Little Angel.

The first thing OB covered were the results of my last ultrasound on June 30th. Turns out Little Angel's head measures in the 45th percentile but the limbs only measure in the 5th percentile. It isn't awkwardly noticeable on the ultrasound and may or may not be in real life. Little Angel's body is developing what's most necessary, which happens to be the brain. My regular doctor stated hands and feet will catch up with time as an infant but brain development won't, justifying why the body is focused on that now. Either way, this is definitely a positive sign.

With the new ultrasound yesterday, nothing new or suscipicious has developed. Everything looks pretty much the same. Baby measures about a week behind, but still falls into chart range. Little Angel gained a pound in the last month bringing his weight to 2 pounds exactly.

Baby measures in the 10th percentile all around. My regular OB told me the specialists were probably going to diagnose growth restriction, but I shouldn't let it bother me. To quote the doctor directly:

"They'll diagnose growth restriction so they can have a medical code for repeat ultrasounds. As long as Baby keeps growing consistently it's not so much of a concern. Further more having a small baby is partially due to the chromosome issue, and mainly because 5'2" 120 pound moms and 5"7' 150 pound fathers do not have 8 pound babies. Also, some babies have to make up the bottom of the growth chart."

David and I also questioned brain function because while we can handle anything physical, we do need to prepare ourselves for mental delays as well. The OB just like the specialists admitted we won't know for sure until October, but there are no signs of brain malformations or unusual activity. All of the lobes are there and all of the necessary nerves are attached in physiologically appropriate places.

Lastly, our OB went on to explain my feeling good is a positive indication. He said usually babies with chromosome issues affect not only their systems but the systems of mom as well. I have no signs of preterm labor, no signs of pre-eclampsia, no unusual pain, I'm not sick etc. In fact, if it wasn't for my belly prohibiting me from crawling through the gates in the barn (and the never ending stress), I'd never know I was pregnant.

David and I also found out we will need to deliver this baby at Children's Hospital. Our regular hospital while great, does not have a high level NICU unit and because of liability issues they will not deliver a baby with known complications. The only way I could deliver in my regular hospital is if we have explicit after-care instructions for Little Angel. However, that's not a decision I'm willing to make until delivery. How can we tell doctors what I want done to help our child, if we don't know what's wrong to start with? It's an emotional battle neither of us are willing to fight until we can see Baby and make a rational decision.

So basically, after two hours of in-depth investigataive reporting, we here at BabyTV have uncovered no news is good news. Little Angel is still growing and kicking around more than ever. At the moment, that's all we ask for.

We'll be the first to keep you informed of the latest updates. Stay tuned.

Monday, July 27, 2009

Putting Down the Church Bulletin.

On the Street of I Can vs. I Cannot at least there's direct signage to God.

I freely admit last week was not a good week in the Think Strong, Be Strong, Stay Strong Department.

I've tried all this time. I do the best I can. Really I do.

But we all have those days. We all have those moments where there's more "I can't" than "I can." More "Why me?" than "Why not me?"

When Saturday rolled around, I was pretty upset at life. Upset with the news for telling me about some dirtbag that left his baby in the car so he could drink at the bar, upset with God for making me wonder if my baby was ever going to be okay.

Needless to say, getting to church on time Saturday night was a drag my feet, teary eyed affair. I knew I had to go, I knew I needed to go; that wasn't the issue. The issue was it took all my strength to believe and I just didn't know what I had left to believe in.

Finally at 7:34 when I realized church starts at 8pm which translates to 7:54pm sharp I made myself get in the truck. After all, if you're caught walking up behind the priest at 7:53pm the charming elderly ladies pass you a glance that's quite frankly not so charming.

I've always, always been a spiritual and religious person. Looking around to see whose baby is crying during the First Reading or catching up on the bulletin during the homily has no implication on my belief in Angels, a Stronger Power watching us from above, Jesus' love and miracles.

I'll be the first to tell you, Saturday night I had to put the bulletin down and listen.
Our fun loving, happy go-lucky priest, who looks like a little like a chimpunk and intones his voice everytime he's passionate about an issue, had something to say that hit me like a baseball to the forehead.

I've always admired this priest's ability to be real-life. I admire him even more now that it was my real life he hit upon.

The point of his sermon Saturday night was this:

"If you ask a great a majority of religious people if miracles happen, they'll say yes in a heartbeat. If you ask a majority of religious people if miracles happen to them, you'll receive a stammer followed by a blank stare. All religious people believe in the power of prayer, until they think they're prayers go unanswered. All religious people believe in the signs God sends us, until they themselves don't see a sign. The thing is, God answers all prayers, God sends everyone a sign and more importantly God is an equal opportunity miracle provider. You just have to be open and honest with yourself. You have to be direct with what you're praying for. You have to pick the sign or you'll be wandering around forever trying to find one. Only when you're honest and straightforward with prayer will you see the miracles God has given you."

The rush of peace that comes over you when someone truly understands is amazing.

That sense of calm relief was sign number one, right there. Point blank obvious.

I was still thinking about church 20 minutes later when we got home.

I had seen my first sign of this whole ordeal. Where were my other ones? Well, there's a carseat and a crib in my disaster of a baby room. Little Angel started on his 9:30pm party in my belly right on schedule. Then there was the day at a family funeral when I asked God to give me some guidance and send me a healthy child. I looked up to find a baby I hadn't noticed at the start of the service playing in her father's arms. When I turned again for one last glance, she was gone.

So I think I have the signs covered pretty well. What about the prayer though? Believe you me, I'm pretty direct with the prayers these days. After all, If I have to ask God for a great deal, I better keep it short and simple.

This is my prayer. This is the thought running through my head 100xs an hour.

"Dear God. Take good care of everyone who means the most to me. Give David and I the strength to get through this. Please protect and watch over my baby. I can handle any physical issues you may give my child, but please let Little Angel's brain function and allow her to lead a normal quality of life. If you are unable to do this for my child, please provide the Angel Wings Baby so truly deserves."

We'll see what happens.

Here's to hoping the words of a kind priest, a couple signs and a solid direct prayer lead to a miracle come October.

Monday, July 20, 2009

Flipping through Adulthood.

When you wake up and realize you're a grown-up.

In these never ending days of working hard and working hard to stay distracted I was browsing through one of my favorite magazines.

As I was flipping through the magazine looking for anything to think about I came across an article entitled "When did you realize you reached adulthood?" Attached to the article were smiling beautiful faces who because they made their first car payment, could get themselves up for work on time and didn't need parental approval for the "Dude of the Week" had reached adulthood.

Then there was the chick who said, "I can get a tattoo wherever I want."

(Hey, I never once said I was reading anything overly philosophical. )

While this article should've made me smile and put me fast asleep, instead it kept me up thinking, (like most things do these days) about when I truly reached adulthood.

With the exception of crazy tattoo lady, I've hit most of those milestones; been through those rights of passages. While I was ecstatic at the time I didn't think I was accomplishing some great feat deserving of a sticker on my Life Chart. Instead I was just merely taking the next step in life, doing what responsible people do.

Ask me when I became an adult? Go ahead, I'm not shy. C'mon....I'm waiting.....

Ok. I'll tell you. June 7th 2009. 9:32am.

That's right. I can pinpoint my entry into adulthood down to the day and time. I can also tell you what I was wearing as soon as my pregnancy brain clears if you really want me to. David could probably tell you what the weather was and what he should've been home doing.

I consider my entry into adulthood the day doctors told me my baby had unexplained complications and "they" couldn't tell me anything other than go home and wait for October. Doctors with years of medical expertise and $200,000 eight year Ivy League educations couldn't and wouldn't tell me anything more than "plan for the worst, hope for the best."

Back the train to Adulthood up here. Wait? What do you mean wait? Waiting is for children. Afterall, how many times do parents tell their little ones, "sit down and wait." "Just wait until you're an adult and realize how much things cost. "Just wait until you have children of your own." On and on. We were all children once, you know the drill. We were waiting for Santa Claus, our friends to come over, the rain to clear, mom to catch us in the mud puddles, birthday parties and well... how fun adulthood would be.

No one ever said that a $1000 doctor bill would only tell you to go home and wait. Hell, for $2.99 a minute Sylvia Brown and her tarrot cards could've told me that.

Turns out adulthood is about waiting as well. The difference between childhood and adulthood is how you handle the waiting. People look at whining grown-ups weird after all. Adulthood is realizing while you can't fix everything you can cope. Adulthood is knowing you can't conquer fear of the unknown until you get heaven, but you can do your best in the meantime.

I became an adult when I learned worry will kill you if you don't get out of bed and get to work. I became and adult when I realized you can laugh, cry, worry and smile at the same time.

Being and adult meant I could feel the way I feel without a guilty conscience. I became a grown-up when decisions regarding my baby were solely mine and David's and anyone else's judgement calls were the least of my concerns.

I entered adulthood when I discovered hope and intutition are the most powerful forces we have. Then there was the day I realized it was perfectly okay to be upset with God and at the same time pray a never ending stream of Glory Be's until I fell asleep.

Then there's the fact being an adult means I can eat zuchinni pancakes three days in a row and wash it down with mint ice cream if that's what gets me through today.

I can spend 20 minutes in the shower recovering from the world, feeling baby kicks, taking it as a sign things are more fine than I thought, without leaving my siblings a cold shower.

Being 27 and truly grown-up means admitting I want to skip prenatal classes not because of the time committment but rather other pregnant women and their joyous pregnancies make me feel robbed.

I became an adult the day I learned to plan for an uncertain future. I couldn't resist the clearance rack at Children's Place, put the crib together, found a diaper bag I loved and worked on paint colors for a room I'm not sure I'll ever get to use. I became a true blood grown-up the day I learned the meaning of "bittersweet."

I've entered adulthood in the last month, whether I wanted to or not.

So in response to the original magazine question, I'd have to say, "The day I realized life is complex; not something of which sense can be made. It's when I finally understood it's how you handle the complexity and waiting that makes you an adult. It's the freedom I felt the day I finally admitted some battles weren't meant to be fought, muchless alone."

By the way, gray track pants, red long sleeved t-shirt, green flip flops. 79 degrees. Should've been home cutting hay.

Monday, July 13, 2009

Perfectly Imperfect.

The future is Perfect. The future is Imperfect. Whether you want it to be or not it's Perfectly Imperfect.

We're always planning for the future. Every action has a reaction. Every action affects what we'll become, who we are, what we do down the line.

When you're five years old, cheek pinching Aunt Alice never asks what you're playing with in the sandbox. Instead she says, "What do you want to be when you grow up?" Your answer is usually along the lines of astronaut, Cinderella, or whatever it is your parents do.

When you're in high school you plan for how you'll see your sweetheart of the month come college. You plan what you'll tell your parents when you discover Boone's Farm at the bonfire. You research prom dresses in October and study hard for ACTs so you can attend your dream college.

In college you discover new dreams and talents. You take a C- in Intro to Chem and realize that maybe Rocket Science wasn't for you. Turns out there is no majoring in Princess. Ok. New direction. New plan. Life is now heading towards a stable and steady field like business or education. Not exactly what you wanted at first, but you worked for it. No matter where you landed it was meant to be all along.

Then you get your first real job and a cool apartment. You want to marry Kenny Chesney. You dream of Being Teacher of the Year or whatever is top in your chosen field. Then you marry a dairy farmer who your friends say looks like the great KC if he's in a hat, you stand on your head and shut one eye. Your job is now working sub pay at the local public school.

However, life is good. Not the future you planned per say. Not the dreams you had at five years old, but a good happy life all along. You are grateful. You can't ask for anything more.

I think with our Little Angel I spent the last month living in the moment; not exactly planning for the future. There's nothing wrong with living in the moment, however, but there comes a time when the future, no matter how scary must become reality.

And so it goes. Back to planning. Something I was too scared to do this past month. This coming from the girl who buys clearance rack wrapping paper on January 3rd because Christmas will be here again before you know it.

While this isn't exactly the future I planned for, not exactly the future I saw coming, it's our future nonetheless. Little Angel will be here before I know it and her parents need to stay strong and do the best for her no mater the outcome.

I've been living in one moment for too long. I've been suspended in worry and doctors appointments. What about the future for Little Angel? It's coming and just because I don't want to move forward, doesn't mean it's not coming full speed ahead.

Yesterday, David and I put the crib together. We need the call the carpenter to finish the basement bedrooms so Little Angel has a room of her own. I didn't think twice when my two best friends talked me into a "Miracle" onesie with angel wings on the back.

This week expect me to paint the baby room while it's still cool. The carseat is coming out of the box. I'll keep playing with the stroller until it opens with one hand. We'll be signing up for childbirth classes, something I was afraid to do last week when everyone else's baby futures seemed so perfect. I'll be researching the best cloth diapers, the easiest bottles and the cheapest high calorie formula on my next rainy day.

I need to plan. I need to look forward to the future. Little Angel is still our baby. Little Angel is still arriving and there's no reason David and I can't enjoy making plans for the future.

Perfectly, Imperfect. Not what was planned or imagined all along but still meant to be.

Monday, July 6, 2009

Meet Little Angel

This is Baby. This is our reason for waking up every morning. The reason we do the best we can. The Little Angel David and I both fight so hard for. The love our life no matter what. Almost perfect toes. Almost perfect fingers. A completely perfect heart full of love, hope and peace for Mom and Dad.

The Truth about Life.

No one knows.

It's the truth. It's my daily reality. It's the source of all my hope. It's the source of all my worry.

No one knows.

No one can tell me a single thing about Baby's chances.

I know. I know. It shouldn't matter. I will love Little Angel no matter what. At the very least, Little Angel will grace our presence and leave us with a legacy in which we have become stronger.

I know I can fight any battle presented before us.

It's what I don't know.

That's my truth. That's my daily reality. It's the thoughts slipping in the back of my mind. It's the what ifs. It's the variables.

It's the what ifs keeping me awake at night. It's the what ifs making life hard.

It's what I don't know that worries me.

I've always been a planner. A Queen of Organizing if you will. A girl on a mission. A place for everything. Always wanting to know what's going on next. Trying to plan for whatever next is.

When we first found out Little Angel probably wouldn't make it, it was hard. However, I could come to terms with that scenario. Have a baby, send a baby to heaven, grieve, move on, always remember there's someone watching over us from Above. Not a simple process at all, but one I understand. One I can get through.

Now however, we find out Baby has a chance at life. I should be elated about this. I should be estactic about this. Should. The operative word in the sentence.

Don't get me wrong. I am overjoyed. I am excited. I am hopeful things aren't as bad as they seem. I pray a string of Hail Mary's every day hoping for a baby with proper brain and internal organ development. A happy Baby who will grow and thrive.

Then comes the worry in the back of my mind. I know I should not think the worst. After all, plan for the worst, hope for the best. Again, SHOULD.

The should part is hard. The should hurts my heart. The should jumbles my thinking. It raises so many questions, so many concerns.

How long will Baby survive?

What issues will Baby have?

What treatments are available for Baby to thrive?

What if Baby does have strong impairments inhibiting a normal life?

If Baby survives, would Little Angel have been better off an Angel of Heaven instead of an Angel of Earth?

Then what?

What I can't plan. What I can't fix. What doctors can't tell me. What keeps me awake at night. What brings me to tears alone in the car. What the Queen of Organizing can't fix. Then what? Something I guess I shouldn't know right now.

Sometimes the surprise is in what we don't know. The surprise is in what we can't control. The surprise is in hoping for the best and finding out it was meant to be all along. The surprise at the very least is always in hope.

Friday, July 3, 2009

Things that Get Me Through Today!

Also known as survival skills.

These days are a recipe of mixed emotions. I can spend 2 hours as happy as can be. I can spend 3 hours as a normal functioning adult. Then there's the 10 minutes of every hour that unending worry kicks in. There's the 20 minutes of every night I pray like I never prayed before. Sometimes the stress of mixing that all together begins to bake with tears and a feeling of hopelessness.

However, there are things I hang onto that get this recipe out of the oven and on to the dinner table. These are things on which I rely.

1) A family who would do anything for me.

2) Girls' Weekends 2 weeks in a row.

3) Good dessert a sister-in-law sent over.

4) A husband with a never ending hope who truly believes things aren't as bad as they seem. A husband who tells me to fight for my instinct, because in the five years he's known me, I've made 3/4s of my decisions on instant instinct and it hasn't failed me yet.

5) Reba's "Strange." I swear when I'm a little bit sad, that song hits the radio. It is amazing no matter how tough life is, you still get out of bed, you stop crying and the sun comes out.

6) Trace Adkins "All I ask." Story of our life.

7) Hope, Hope and more Hope.

8) An ultrasound picture with smiling baby.

9) Getting kicked by Little Angel everytime I google things like "incorrect amnio results" "misdiagnosis" or when I talk about Little Angel like he's going to be fine. I'm taking that as a sign maybe, just maybe things are fine.

10) Every day I make it without an issue or a complication with Baby. At first it was just plain upsetting because I want the whole thing to be over and a baby in heaven. Then I realized everyday that passes is one more day for Baby to grow big, strong and relatively healthy.

11) An innate belief that God wouldn't let me bring a crib home and buy a clearance rack carseat if Little Angel wasn't meant to be here.

12) The results of mine and David's blood karyotyping. We're both chromosomally fine. We now have no explanation for our weirdness, but from a scientific standpoint, we're perfect as can be. This means we can someday have more healthy, beautiful children. Little Angel is truly a one time act of God. A one time act of God meant to be.

13) Prayer, Prayer and more Prayer.

110 days of survival left. 110 days until I see Little Angel. 110 days until Little Angel graces our life in ways we have yet to understand.

Wednesday, July 1, 2009

Dear Baby.

A talk with Little Angel.

Little Angel,

We are glad you are going to spend a lifetime with us.

As your parents we will help you across any bridges you may face. We'll help you be strong and give you the courage to overcome any obstacles.

We will give you the best life we can.

Your Mom and Dad promise. It's the least we can do.

However, we have to ask. We need to know.

If you weren't growing Angel Wings in there, what exactly where you doing then? Please explain.

We weren't expecting you to give us this kind of scare until you were at least 16.

That said, whatever the explanation we still love you. Just don't do it again.


Mom and Dad.

PS. You're grounded until you're 18. Just so you know.

The Rollercoaster of Life.

On the upswing part of the track again.

All I have to say today is that I am grateful. I am beyond thrilled. I am excited for what the future may hold. I don't have thanks enough for the prayers and good thoughts people have sent this way. I never truly understood faith and its power until this moment.

It wasn't always that way. In fact I was about in tears at the amusement park on Saturday when I started comparing the rollercoaster to the emotional rollercoaster David and I have been on. Emotional Rollercoasters are hard. They're thrilling, they're exhausting. You know when the ride starts, but you don't know when it will end. You have no idea how much peaceful track there is. No idea how many dips. No idea how scary the uphill climb is or how exhilariting the downhill swing is.

Today we are on the downhill swing. Thanks to the miracle of prayer and a compassionate genetic specialist we now refer to as Dr. Miracle we are going to be okay.

Little Angel still has a clubbed foot, a cupped hand and a spot on his heart. However, the doctor sent to us yesterday said these things are in no way indicative of the Orders to Heaven we received last week.

He said the limb problems can be corrected. Baby's heart spot is getting smaller. Surgery may be required after birth or it could go away. The chances of either are about equal but not any greater than other healthy babies.

Little Angel's head has also taken on a more normal shape compared to the Lemon-head mental impairment diagnosis we first received. When I quizzed Mr. Miracle about the risk of mental impairment he said he can't diagnose that, but he can't for any baby no matter how healthy. Dr. did say that he didn't see spots on the brain, fluid around the brain, abnormal head size or anything else usually indicating impairment. The only way we will know is when Baby starts missing milestones after birth. Mr. Miracle did say it wasn't anything we should be overly concerned about because other than the Trisomy 14 issue, the amnio didn't show any other diseases related to mental impairment.

Furthermore, the doctor told us that if we wouldn't have been forced into an amnio we would have thought Little Angel's issues to be purely physical, no one would be the wiser and we'd have all been better off.

This is a good place on the roller coaster. That part where you're about to slide down the slope and laugh uncontrollably because you don't know what else to do when that sense of relief and excitment hits you.

However, we have one last slope to climb on the coaster. Mr. Miracle tells us he is concerned about baby's physical growth after birth. He much prefers I deliver this baby at Children's Hospital so a feeding tube can be inserted if necessary and any issues related to Failure to Thrive can be corrected quickly. We will have an u/s every month now to determine how fast baby is growing and what course of action we need to take so baby can thrive in this great big world.

This is a slope we can climb. This is a slope we can handle. We never thought our rollercoaster ride would turn out as it did, but it did.

We'll keep praying and keep hoping until the end of the ride. Thanks to everyone who has joined this rollercoaster ride with us. We appreciate all of you.

I don't love the ride I'm on, but I'll love the end of the ride indefinitely.