Tuesday, March 20, 2012

Today I Believe

Our family is very Irish...so this last weekend was a celebration for us.  My mother's church had an Irish Potluck with a bagpiper and all.  Landry had a blast!  They handed out a poem at the potluck that just really stuck with me, and I wanted to share it with you all.  I don't know who to give credit to, because it was in a pamphlet, and no name was attached to this particular poem...but here it is:

Today I Believe

Lord, You have always given bread for the coming day;
and though I am poor, today I believe

Lord, You have always given strength for the coming day;
and though I am weak, today I believe.

Lord, You have always given peace for the coming day;
and though of anxious heart, today I believe.

Lord, You have always kept me safe in trials;
and now, tried as I am, today I believe.

Lord, You have always marked the road for the coming day;
and though it may be hidden, today I believe.

Lord, You have always lightened this darkness of mine;
and though the night is here, today I believe.

Lord, You have always spoken when time was ripe;
and though you be silent now, today I believe.

I've had a couple people ask me why I title each post with scripture.  Mostly its to remind me of my blessings, and of the promises from God that I can find in His word...but also to encourage others.  I wish I had a picture of our family in Irish gear...but Gracie was getting fussy so we didn't get one.  I did manage to get a couple cute pics of my two most precious blessings this weekend.  Have a great week!!!!
Landry and Gracie helping momma cook!

5 months

Friday, March 16, 2012

“So today when I came to the spring, I prayed this prayer: ‘O LORD, God of my master, Abraham, please give me success on this mission." Genesis 24:42

We are headed to Baltimore!  Our appointment is May 3rd.  My mom is going with Gracie and me, and we are going to tour the hospital/house on hospital grounds, meet with staff, etc!  Robert will stay here with Landry because he has end of the year stuff at work, and Landry has school.  I can't tell you how excited and sad I am.  I'm excited because this means we will get an "official" diagnosis, develop a care plan, and I can prepare for as much as possible.  Sad because it all just confirms our reality, which part of me just keeps hoping is a dream.

We took part in an online web chat that 2 of the doctors at RIAO offer once a month.  This service alone was more informative then our office visit to the peds ortho doc out here.  The staff, doctors, and other parents on this chat were so funny.  It just made us feel like family.  To have doctors who can give you a comfortable, reassuring feeling over a computer screen is amazing!  I can not wait to meet them in person!!  We feel that we have definitely found the right place to care for our daughter.

So...based on xrays and a doctors report that we sent, along with info on changes we are seeing in Gracie's foot/ankle...it sounds like Gracie will most likely have a foot/ankle reconstructive surgery at anywhere from 12-18 months.  (Now, this is all over a computer, and could change when the Dr. Standard actually sees her in person.  He also wants to get new xrays...the ones that were originally taken were not done very well).  Dr. Standard felt like the FH diagnosis was probably accurate (it may also be a congenital femoral deficiency), but we'll get a more definitive answer when he can see her.  We did get confirmation on the BEST part, and that is that it does appear to be mild.  Now, mild still looks like surgery...but compared to what severe is...I'll take mild with a smile on my face!

I will keep everyone updated on our trip to RIAO in Baltimore, and just on how we're doing in general, but for now I am happy to have a path to start traveling on.  Please pray for guidance for Robert and I as we have more and more decisions to make, for financial provision, for strength during the times that this gets hard for us, and for God to bless this journey we are on as a family.

Wednesday, March 14, 2012

"Many are the afflictions of the righteous, but the Lord delivers him out of them all." Psalm 34:19

Fibular Hemimelia may not "feel" like anything to Gracie right now, but it "feels" like an affliction to me.  For those who don't know what FH is... FH is described as a congenital partial or complete absence of the fibula. Most of the time it is associated with other lower limb anomalies which could include the femur, knee, tibia, ankle and/or foot. The most pronounced problem is that of a shortened tibia and poor ankle structure. FH is treated by amputation, reconstructive surgeries and/or limb lengthening.  We do not have a treatment plan for Gracie yet, and amputation was not recommended for her.  Right now we could be looking at anything from PT, to reconstructive surgeries and limb lengthening surgeries.  I will post more as we know, but I wanted everyone to have an idea of what FH actually is.

Gracie's right leg is at least 1/2" shorter then her left, and the difference is growing bigger.  She is missing her last 2 toes, and her 2nd and 3rd toes are webbed together.  Her ankle is twisting out and dropped.  According to records we received yesterday, her heel bone seems to be missing as well.  (the right calcaneus was not ossified, but her left was). 

Thanking God for His promise to deliver us from our afflictions, in His timing and His will!

I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20

Gracie is 4 1/2 months now, and doing great.  She smiles constantly...I mean she is one of the happiest babies I've ever seen.  Landry was a happy baby too, but she gives away her smiles a whole lot easier then he did.  Her laughs...well that's another story. She's making me work hard for that, and still haven't gotten one yet.  She's so close to laughing its crazy, so I can't imagine it will take too long.  She should be rolling from her back to her tummy any day now too.  She's just loving life, and we love having her in ours!

I finally decided to join a support/awareness group on facebook for Fibular Hemimelia.  Its been just as helpful as scary.  These families are amazing, and welcomed me with open arms followed by GREAT advice.  Its so good to know someone who has been there.  Its also great to meet people who are there now!  I'm following some blogs and really looking into things.  I think the reality has sunk in, and now I'm ready to fight.  I'm ready to make sure my baby girl gets the best, and has the best chances at normalcy.  I still have days where I'm just knocked over the head with emotion.  Its a big roller coaster ride I didn't even know I was on.  The other day, my mom bought my niece some shoes for her birthday...the absolute cutest shoes and my heart just broke.  Its hard to explain, I was so happy for my niece...they will look great on her...but devastated that shoes won't ever be easy for Gracie.  I loved shoes...they used to call out to me before I had a husband and babies...now they ignore me, lol!  I hope Gracie can have her own special love affair with shoes one day...just with a few twists.

We have started noticing Gracie's leg length discrepancy has grown, and her ankle has dropped down and turned out.  Because of this, the connection to others going thru FH has been very helpful.  I have found out you don't really have to wait until a year to get a care plan going or hear some answers to your questions. So...I'm taking her to the best of the best!  The Sinai Hospital in Baltimore Maryland has a limb lengthening institute called RIAO.  (Rubin Institute for Advanced Orthopedics).  We have an appointment scheduled for May 3rd, but are waiting to by airline tickets until we talk to Dr. Standard tomorrow night.  His answers to our questions will determine when we take Gracie out there...but she will end up there at some point.  I'm hoping its sooner then later.  Anyone who knows me, knows I'm super organized.  I hate change, and LOVE to know what to expect.  I thrive when I can work within boundaries of schedules and plans.  So...I'm praying tomorrow night will tell us to come out and get a care plan.  They won't really do procedures on Gracie so young, but I just want an idea of what to expect as far as her care goes....so really hoping to get that.

I believe today is the day our journey begins, not the day Gracie was born, but today.  Because today I am fully in, fully aware, and fully ready to stand, fight, love, hold, cry and help my baby girl thru this process with all the power and strength God gives me!  So...with faith the size of a mustard seed, we stand...ready for God to heal, fill, and renew us!

I wanted to post some pictures of a photo shoot we had for Gracie at our house and some others I've just taken here and there.  The photographer was Franchesca Day...if you need her contact info to set up pictures with her, let me know!

Her whole face lights up when she smiles!


Taken by Franchesca Day Phtography...one of my favorite pics of her!

Taken by Franchesca Day Photography

Landry and Gracie...these two complete our life!

Landry is the BEST big brother...he adores his sissy!

"You shaped me first inside, then out: you formed me in my mother's womb." Psalm 139:13

I remember finding out I was pregnant with our daughter Gracie.  I was so excited to have another baby.  I am the person who LOVES being pregnant.  Truth be told, its not too hard because I have easy pregnancies.  With the exception of both my babies trying to come early, I got to enjoy every trimester.  Our first child, Landry is now 3.  He was an unexpected c-section, so Gracie was planned that way.  On October 29, 2011 I walked into the hospital, got checked in and got ready for surgery.  The process was so much calmer, I felt like I could have fallen asleep during surgery.  Until she was born anyway.  The OB announced time of birth to complete silence.  Nurses surrounded my baby girl, and no one answered my questions on what was wrong.  (I'm so thankful the nurses were more focused on doing their jobs instead of answering my questions...but in the moment, the silence was hard).  The anesthesiologist finally told me the cord was wrapped and she wasn't breathing.  They were cutting it and getting oxygen on her.  What seemed like forever, finally ended in the beautiful cry of a newborn baby girl!!!!  I thought the scary part was over.  My husband took her while they finished the c-section and as I was wheeled into recovery, he told me she was missing 2 toes.  He was so shocked he didn't even wait for them to finishing wheeling my bed in, and I thought he was joking.  Seriously, I even laughed and said that's not funny.  To which he said he wasn't kidding.  I just couldn't think of anything other then this was some sick joke.  I never worried about her having all her fingers and toes.  I worried about her heart (Landry has a murmur and holes), and about her head (they kept saying she was too small), but not about her toes. 

It took him showing me her foot to realize he wasn't joking.  The next few days were a blur of frustration and fear.  She wouldn't nurse and lost too much weight, had jaundice and we ended up in the hospital an extra day because they weren't ready to send her home.  All the time I see this tiny little half foot...that's what it looked like to me.  Half a foot.  She has her first 3 toes on her right foot, toes 2 and 3 are webbed together, and the entire foot stops there...its incredible.  Robert was devastated and we were both exhausted. Finally we got to go home with referrals to a geneticist and pediatric orthopedist.  The hospital doctors thought it might be Amniotic Band Syndrome, and wanted us to see both specialists.  My mom gave me the best advice for her at this point...just take her home and love on her.  Both my family and my in-laws were so positive and amazing!


Fast forward one month.  Gracie is doing good, weight gain is great even though she's still not nursing.  The geneticist appointment was hard, but he did not think it was ABS, felt like it was Fibular Hemimelia, and not related to any syndrome or genetic issue.  Pediatric Orthopedist agreed.  Basically we spent an entire day at the hospital and left with nothing more then the following:  -her right leg is shorter then the left, this difference in length may or may not continue to grow, -she should walk because she has her big toe, and -at some point we may need a leg lengthening.  Apparently this was all we could handle hearing at the time, because we didn't ask questions...we just said ok, be back in a year for follow up.

A picture of Gracie's feet

Newborn hospital pictures

Daddy holding her while waiting for my surgery to be done