Dealing

I've been wanting to blog about so much for quite some time.  I have been extremely hesitant.   For starters, I'd be exposing my emotional weaknesses, but more importantly I'd be sharing my intimate fears, concerns, and thoughts about Lauren's condition.  It's a peak inside of my ever troublesome mind, which fills me too heavily.  If you know me, you'll know that I easily am able to empathize and feel so much emotion whether it's happy or sad with many people.  One thing I do struggle with is sharing my own with others.  I'm private with my emotions.   

My biggest fear is that when I'm down or having an off day emotionally, I may come across as being too negative or complaining.  I understand that hings could be worse; in fact, this thought gets me through so much.  Lauren is amazing, and I wouldn't trade her for any perfectly healthy, physically abled child on the planet.  So, please understand that I know what a blessing and miracle my daughter is. 

I'm making a vow to myself, whether I post it here or write in a journal, for the sake f my mental clarity, and general well being I need to write these feelings.  You may not know, but I had always had good blood pressure.  The strangest thing, from the moment I received Lauren's diagnosis my blood pressure has been way too high.  Like, seriously high.  It's something that I am still struggling with.  Because of this, I feel that I can't keep those feelings hidden and locked up inside of my chest.  I have a constant nervous energy in the top of my belly.  In fact, it's become such a constant in my life that it's "normal."  So, here goes...

Last week I decided to take a little drive on a hunt for photography sessions.  As I'm grabbing Lauren to head out the door, I smell it.  It's a smell that's not too pleasant, but brings even more unpleasant feelings.  Laurens' colostomy bag has broken.  I had just changed it the night before.  So, we go downstairs to change it.  Me, thinking in my brain, "how in the world is Lauren going to handle these mishaps in school when she gets older..."  Then, I look down at her and see that she is smiling, holding onto the bottle of stoma powder.  She has such an innocence.  No clue of the harshness or realities of the things that lye ahead.  All I want to do is protect her from it (but instead I make mental notes to prepare her for it-take it on face-forward).  What she experiences is going to be her normal.  She won't know a life without these challenges or differences.  Is this good or bad?  Think about it.  What if the kid next to you passed gas, but it was loud, and they did it all the time?  What if you knew that kid next to you had a bag of poo just sitting there right under their shirt?  Would you feel distant from them?  Would you be grossed out?  If you were the boy, would you ever be able to think of her as being pretty?  If you were a peer, would you want her as your friend?

Once, I get her finished I grab my keys and look down and realize that I forgot to put her braces and shoes on.   So, off downstairs we go.  I show Lauren her socks, braces, and shoes and say their names.  By now my mind is in a deep place and I begin to think about braces.  How they are a flashing light to strangers that read, "Hey, look at my legs-something's wrong!"   Obviously, this is not what I want and may not be true, but it's where my mind travels. 

I'm sooo ok for someone to ask about the braces.  In fact, I feel better when they do.  I can see the glance, and the struggle with the braces.  Should I ask or ignore it.  Trust me, it's ok to inquire or ask.  It gives me a chance to quickly and lightly explain.  I think once that's out, they feel more comfortable, which in turn makes me feel better too.  (funny thing-at first I kept thinking, why are people always staring at me lately?  Does my hair look crazy... Then I realized, it's not me they're looking at-it's Lauren, who is strapped to me in her bjorn)

See?  I know it's not the most serious or worst thing that could happen, but these things are a constant in my life.  When I go to bed at night, I wake up with the same feelings.  It doesn't leave and I have a feeling it never will.  I will tell you this though, my life with Lauren brings me more smiles and laughs, than tears.  She has the ability to move me so far into the happiness spectrum, I wouldn't think it would be possible to feel any other emotion sometimes. 

So, in closing, I'd like to thank you for riding this journey through my words.  I know it's not the same as living it, but it's going to give me an opportunity to share Lauren's progress, setbacks, and an opportunity for me to release the anxiety and stress that I have been silently carrying for way too long.

Close, but no....

We were so very close to getting to come home cast free, but in the end the surgeon felt that Lauren needed another 4 weeks in casts.  I was obviously disappointed she'd have to be put back in, but was completely OK and trusted his decision.  It's really for her benefit and is best for the long term.

I was really happy though when I learned that the casts would just be to below her knees.  They are cute, they look like little boots:)  Anyway, Lauren is doing great and we will head back in beginning of May to get her AFOs fitted in a shoe.  We were able to take the AFOs home with us to go shopping for shoes that will fit around them.

Now this is going to be interesting, because her left foot is larger, so we may end up always having to purchase 2 pairs of same shoe.  Silly, really.  Let's just hope the shoe fetish passes by this little one...

Anyway, here is a video of her day at doctor getting her feet checked out...

Things I can do...

Lauren has been super busy the last 5 weeks showing us what she can do.  Spending her first 4 months in the hospital put her further behind, but don't tell Lauren that...she's busy playing catch up.

We're still working on some things.  Actually, I think we will always be working on things.  But nonetheless, I couldn't be more proud of my little boo.  In fact, we just finished making her goals for her home plan.  There are things that I know with time and assistance she will be able to accomplish, and that feels good right now.   She has so many milestones ahead of her.  She may not do them the same way as most or on the same time schedule, but I just know that this little determined daughter of mine will surpass any and all predictions. 

Clinic

Lauren attended spina bifida clinic in Nashville today.  Overall, we received a good report and some interesting tidbits...

She began the morning with an ultrasound on her reproductive organs...which we received results when we met with uro later that day.  Remember when I mentioned that Lauren has 2 vaginas?  Well, it appears she has a double reproductive system, which means she has two uteri (uterus)...

The doctor said that it's actually not that uncommon to have this anomaly.  Right now, it's not causing any problems, so "don't touch it if it doesn't need to be fixed yet"...  In a year or two when we find out more about her urinary issues, we will discuss future plans.  

Overall, she is a hot mess inside, but nothing that can't be adapted or mended.  Honestly, I'm not too worried about it now.  We have a really good idea of what's going on and are keeping an eye on things.  The doctor said if her kidneys are growing correctly and bladder is doing it's job, then we're in good shape for now.  The next time we see uro we will get a renal (kidney) ultrasound.

Next up was nutrition.  Lauren has been vomiting her milk, typically the last one of the day about 5-6 times per week for past 6 months.  She also has a very strong gag reflex, which has been stopping her from moving on to snacks like the puffs and yogurt bites...  Even cut up into small pieces she gets gagged up and usually will throw up.  So, it's been a bit frustrating, but from reading around it seems pretty typical for children with Chiari II to have sensitive gag reflexes...  the nutritionist just really wants to make sure that Lauren gains the adequate amount of weight and receives the proper nutrition.  So, she will be referred to someone to perform a feeding evaluation.  She can then receive a type of oral therapy to help her with her feeding.  This pleases me and calms my mind more than you know.  

Last was a visit with her neuro surgeon.  It has been a "quiet" 6 months neuro wise for Lauren, so we are very pleased with her progress.  I remember a time when I prayed for this type of serenity with her shunt and thought I would never see a day like these.  We are very blessed that her shunt has been working so well.  We talked a little about other things, including her eyes and her sacrum.

Lauren's left eye wanders A LOT.  Typically to the inside.  I wasn't sure if this was caused by hydrocephalus or more a muscle thing.  It's not the hydro, so I will get a referral from my pediatrician to the pediatric eye team at Vandy.  I'm also relieved that we can get on top of this and try and make progress before it gets too bad...

The sacrum are the last 5 vertebrate in the spine.  As we grow, they begin to fuse together into a triangle shaped bone between our pelvis bones.  When Lauren was being created, a large part of her sacrum wasn't made.  Which, means that she is missing most of this bone.  When I did a little research online I found that when this happens its not uncommon for the child to have an imperforate anus...  Ahaa!  

Anyway, for the time being it's not an issue.  When she gets older and larger, and begins to bear more weight onto her lower half, we may have some obstacles since her pelvis doesn't have the support of her sacrum.  This means that if she becomes mobile with crutches, walker, braces... she may be even more limited and will have to rely more heavily on a wheelchair.  Which actually doesn't really bother me.  We expected from diagnosis that this would be her life and that's a part of who she is and we love EVERY part of her. 

We did not visit ortho as a usual sb clinic goes because she will see him in two weeks to check out her feet and possibly get her new AFOs.

Anyway, all went well.  I got some very helpful information and felt at ease with things as they are.  I trust that with intuition, prayers, and staying on top of things, all will fall into place.  

Lauren was also a fabulous baby today!  

Love to all:)

Lauren Turns One

Our Lauren turned one yesterday.  I could not have been more excited to see her celebrate the day.  It's hard to imagine what has all happened in only one year.  This was certainly a year marked by triumph!  A year when my medical vocabulary exploded.  A year when two older sisters accepted and captured a baby into their hearts.  A year when a baby became wrapped around her daddy's fingers.  A year when love transcended all.

I'll never forget the moment we first saw each other.  She was crying and when Lauren was brought to my side, I placed my hand under her back and said hello and began... She immediately stopped crying... and I immediately fell harder than I thought possible for a beautiful sweet baby girl.  I still continue to be overwhelmed by my love for her.

During this year I realized the power of prayer and patience.  Through obstacles some small, others larger-the Lord proved to us His will through Lauren's determination towards healing.  I will forever be grateful to the family and friends that stepped forward to show support in every way imaginable.  Whenever someone approaches and tells me that they prayed for Lauren I am usually moved to tears.  A selfless and simple act impacted our lives in ways that I'll never be able to express.

Thank you also to her hospital family (Jennifer, Karie, Kaitlin, Lita...) for their amazing efforts and dedication to their jobs.

 

 Lauren spent the day with her family.  We played lots and celebrated the end with a cupcake, which Lauren didn't care for...  We're looking forward to another year, but this time with less obstacles...

Recovery Update and Random Thoughts

Lauren has been recovering beautifully since her surgery last Monday.  The only hiccup we had was a fever for two days following surgery.  Her fever never went too high and didn't last too long.  I still called surgeon's office and visited my local pediatrician.  

We have just been trying to be careful to position her feet and legs comfortably and trying to be as gentle with her as possible when moving her around.  

We will go back to ortho on the 28th to get a new set of casts, then 4 weeks later another set, then four weeks later they should be off for good if all is well!

On another side note....
 
I really wanted to explain that in previous posts, sometimes I may come off as being sad about some of the things that Lauren has to endure...  I am to an extent worried or sad about what obstacles-social and emotional-that she will encounter throughout her life because of these things.  But, very importantly, I accepted Lauren's spina bifida the day she was diagnosed in utero.  I knew without a shadow of a doubt that my daughter, differently abled or not, was exactly what God intended for me to have.  

Lauren has blessed me in so many ways, that one day I am going to have to thank her for making me a better woman and mother.  I just really wanted to stress that when I vent or deliver posts regarding procedures, disabilities, or abnormalities that she has, I am comfortable with these things.  I accept these differences and would take a thousand more if it meant keeping Lauren with me here on earth.  

I know that this post is a bit random, but after reading back on a post or two and some comments I began to fear that I was coming off as "complaining"... which couldn't be further from the truth.  I hope that everyone understands that complaining is certainly and never will be my intent.  I am truly blessed and am thankful daily for my wonderful family.  I am also blessed to have such a wonderful community of supporters and followers of Lauren.  And thanks for listening to me ramble... 

Surgery Update

Lauren went into surgery at 7:20 this morning and came out at 11:45.  

My sleepy bear...

 She is responding really well!  Hasn't cried one time and does not appear to be in any pain from her feet.  Which is a good and bad thing.  I don't want her to be in pain, but if she was it means that she could feel her feet.  I suspected that she wouldn't be able to feel, but I was hoping:)  

They ended up releasing and correcting tendons and bones.  She has stitches and temporary pins coming out of each foot.  They are wrapped well within her hot pink casts.  We're just checking for swelling...  Over the next few weeks we need to be watching for any signs of infection or blistering... Which is hard with casts on and without her being able to tell us.  

So fever and or consistent irritability is key.   Plan is to take these casts off and the pins out in 6 weeks, then make molds for new AFO's, then recast for 4 more weeks.  This doesn't seem so bad. 

Her casts before the sisters get a hold of a marker and finger nail polish;)

As far as urology is concerned, they decided that her defect was rather high, which can make things a bit more difficult to fix.  As discussed in the past, we're still thinking that her colostomy will be permanent, therefore allowing less surgical work for her rectal tract later on.

At this point, which it could change, we believe that she has little to no bladder control.  Which means that once the urine is made, it doesn't hang out in bladder and come out in bulk-it just comes out once it's made (her bladder doesn't hold the urine).  If this is the case, less surgical work to urinary tract will be needed as well.  She would use a catheter through her abdomen straight into her bladder to urinate.  This would obviously be a surgical procedure and this too would be a permanent solution for urinating.  

All this being said, it may turn out that they will just have to close off each of the fistulas (or bridges) between each tract and just really focus on the vaginal one.  During today's procedure they discovered that she has two vaginas (yes, you read it correctly), which apparently is common with a urogenital sinus defect.  So, when they work on these things, they would correct her vagina as well giving her just one.

You know, right now her defects aren't presenting any problems and if this is the case she probably won't have these surgeries for another year.  They want her to be larger and when she's about 2 (when typical children begin to potty train)  would be a good time to address these issues.

I'll be following urology in SB clinic still and we'll stay on top of and monitor things, but for time being this is the plan.

Thank you all who have followed and prayed right along side of us during her journey.  I am incredibly blessed to know such wonderful people!  

Love,

McGinnis Family