Hydrocephalus Walk

September is Hydrocephalus Awareness month, reminding us all the there is NO CURE for this condition and in most cases, brain surgery is the only treatment for affected patients.  In the majority of cases, one surgery is not enough and shunts malfunction, requiring follow-up surgeries for the patients

We are SO thankful that Lucy has not had any issues with her shunt thus far, but every time she seems extra sleepy or throws up or tells me that her head hurts, I briefly worry that this might me the time.  :( I try to remind myself to take a deep breath, trust God and know that His plan for her life is EXTRAORDINARY and He will take care of her always.

We were able to participate in the local Hydrocephalus Walk at the Mall of America again this year - it's still quite a feat for us to get 4 humans out of the house by 7 am, we were feeling pretty good about that!  Lucy got to meet Miss Minnesota (a real princess!), which was her favorite part!  All hydrocephalus patients got an orange bandanna to wear, which Lucy wore proudly!

We have an appointment with Lucy's neurologist next week - thankfully no MRI this time - and anticipate that it will be an uneventful appointment...will post after we meet with him.  Jason and I are continually impressed by miss Lucy - she can read most words, is hilarious at times and is such a sweet, caring big sister!

Thank You for your continues thoughts, prayers and support for Lucy and all of us!

Relaxing in the crib together...

Playing Salon with Daddy

PJs on, ready for a story with cousin Dawson!

And look which sweet, sweet baby is 3 months old already!!!

3 Years Home!

Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer."

It is a joyous night in our house as we celebrate the 3rd anniversary of when Lucy came home from the hospital.  What a remarkable little girl we have.  It's been a wonderful 3 years, but especially uplifting in the past 12 months as Lucy recovered from having her feeding tube removed, made great strides in her overall eating and started preschool!

I am humbled at the plan GOD has laid out for our family and how we have been able to witness His blessings and healing in Lucy's life.

Meanwhile...Lucy's latest MRI was traumatic for her (as you can expect!).  They do a "Quick-Brain" MRI to evaluate her shunt performance, which required Lucy to be in the MRI "tunnel" for 10 or so minutes while they took a series of pictures.  She was NOT a fan!  If you've ever been in an MRI machine you know that it is tiny, bright and loud.  Lucy was strapped down with a blanket tightly around her arms and mid section and she had a strap around her head keeping that still.  I was able to be in the room with her and hold her legs/tummy and sing at the top of my lungs to TRY to keep her calm.  She did quite a bit of moving and wanted to be ALL DONE, but in the end, they got the pictures that she needed, so that's a relief!!  She even played "MRI" at home that night and put her teddy bear in a makeshift tunnel and role-played...it was pretty cute in a sad sort of way. :)

The results were very positive.  Her shunt appears to be doing its job and her brain, although still not "normal" looking (it never will be), is healthy and clearly functioning very well.  Her neurologist is happy to report that unless there are issues, she doesn't need another MRI for 2 years - YAY!  (Maybe she will have forgotten about this one by then?)  Lucy impressed him with her ability to read "Medtronic" on one of the tools in his office...since I work there she sees that word a lot. HAHA!!

Thanks to all for your continued interest and support in Lucy's journey.  She is such an amazing kiddo!  Here are a few pics of what we've been up to this fall:

Celebrating sweet cousin Dawson's first birthday, you know in our costumes, next to a turtle!

Ready for hockey season (this is what happens when mom gets busy at work and daddy takes Lucy to Target!)

Playing in the leaves!!

Summer is coming to an end!

Cloud gazing with mom

Let me tell you that the end of summer is rough in Minnesota...we all know that fall is Ah-Maze-Ing here, but that the snow will soon fly and it will got C-O-L-D! :(

But, until that time comes, we are making the most of the beautiful weather of September.  We celebrated with one last fishing trip on the lake, a trip to the splash park, a few special trips with mom and Lucy while daddy was gone for 10 days and of course...getting ready for preschool!

What a change from a year ago, when Lucy was in the hospital while the doctors tried to figure out how to stop her feeding tube site from leaking.  In case you are wondering, we are VERY glad we made the decision to switch her GI care to the University of Minnesota and I hope to never be in that situation again where I feel like her care team isn't doing everything they can to solve her immediate health issues but are putting their arrogance and text book solutions before actual patient care....I could go on a rant here for awhile, but I won't...because that is all behind us and we've learned important lessons along the way!!

Lucy is doing great.  We have a few big events coming up...preschool starts tomorrow.  Lucy will go two mornings a week for about 2 1/2 hours each to a school district Early Childhood program.  Her class has about 15 kids total in it and she is one of a handful of kids that has a special education teacher assigned to monitor her progress.  Because of her hydrocephalus diagnosis, learning delays are probable so she qualifies for special education programs through the school district.  In addition, we have a health plan on file with the school because of her eating restrictions.  There is a snack every day and I am most nervous about her eating while we are not around...will she be able to handle whatever is for snack?  Will she feel singled out if the teacher tells her she has to eat the snack that mommy packed for her instead of what the class is having?  It's hard being a parent and letting your kids grow up and be independent!  I think it's impossible to NOT want to protect them from everything that we can - especially when there are extra special needs involved.

We are also participating in the annual Walk for Hydrocephalus this year...more on that in a future blog!  Our local community has already raised over $30,000 towards hydrocephalus research!!  If you'd like to donate on Lucy's behalf...here's the link to our fundraising page: Donor Pledge for Lucy London.

In the meantime, here are some pictures from our recent fun:

"Doctoring" her baby at AppleBees

The local Splash Park!!

Any fish in there, Lucy?

YAY! Reunited with daddy after a long trip away.

Being Lucy's Mom

I've said many times that this blog is about Lucy...to keep our family and close friends updated on her progress because we know you all care for her and love her and pray for her...and we appreciate that SO, SO much!  But today I want to share with you a link to a wonderful blog post (found at KevinMD.com) that captures so many of my thoughts and fears and feelings over the past 3+ years: Remember mothers of sick children. I was talking to my mom just this week about how having Lucy changed me in a way that I could never have imagined.  The blog writer, Courtney Schmidt, writes this about the mothers of sick children:

"They are faced with the harsh, unfair realities so they’ve been forced to clarify what is truly important to them. They know that the most precious parts of their lives may not be around forever, so they’ll appreciate every moment. Their child’s illness has given them a higher calling, a purpose in life that is beyond any desire they’ve ever had. They know exactly what they’re fighting for."

On a separate note, we've been enjoying springtime in Minnesota and Lucy is VERY excited to play with the neighborhood kids this year!

Full wagon for the playground today!

She would rather push than ride....

Play date at the park...running to meet her friend on the slide

An update on Lucy's TEF

We get asked a lot of Lucy can eat "normally" now.  The answer to that is still "no!"  Here's what she can eat:

 - Most cereal (Kix, Cheerios, Chex, etc.)
 - Crackers (Ritz, Saltines, Triscuits in small portions, oyster crackers, etc.)
 - Sliced cheese in small portions
 - VERY well cooked soft vegetables like carrots, green beans and peas, about 5 to 8 small pieces at a time, followed by a few swallows of liquid
 - VERY well cooked pasta rings, again about 5 to 8 at a time
 - Fruit bars, like Nutrigrain cereal bars
 - Anything that is naturally smooth (peanut butter, applesauce, yogurt with no fruit chunks, etc.)

Everything else we grind up for her in the most fabulous invention for a person with this condition...the hand-held food grinder!  We are forever in debt to my mom for getting us one of these - we use it multiple times a day and never leave home for a trip to a restaurant or weekend away with out!  We can't make a quick food stop at a fast food restaurant because most don't have anything that we can grind up for her to eat.  We end up going to places like Panera, Potbelly or Culvers if we are on the road and need to make a quick stop - because those places all have soup on the menu!!  Most of her main courses are ground up soups, pasta with sauce and veggies or whatever we are eating mixed with a liquid or sauce to make it smoother for her.

Our best friend...the handheld food grinder!

We try to balance letting her eat what she wants if we are eating it, with saying "no" to things we know she won't be able to handle.  Often we give her "tiny bites" of whatever we are eating, like the crust of a pizza slice, or a tiny piece of fish (think very tiny - like a mere crumb).

Lucy's esophagus is shaped like an hourglass, but the inside of it has a "shelf" of scar tissue.  Her entire esophagus had to be connected together when she was born, so there will always be a part of it that is 100% scar tissue and will never be as stretchy as the rest of her esophagus.  As she gets older and understand more (and has better self-control), she will be able to eat more "normally."  However some foods will always be hard for her to eat, like meat for example.

Here is an example of what Lucy's anatomy looked like when she was born.

We are so thankful that she is doing as well as she is.  We are also so thankful for the doctors and nurses that God has put in her life.  We haven't always liked everything about every one of them, but we are confident that they tried to make the best decisions for little miss Lucy and for that we are grateful.  I follow many stories of children born with VACTERL/TEF and there are some tragic endings to those lives and many, many children with feeding tubes, respiratory issues and many, many dilatations.

Despite everything Lucy goes through, she is still able to enjoy life...and let me tell you...this girl LOVES to laugh! :)

Fake sleeping at her first live theater event - we saw Goodnight Moon - what fun!

Truthfully, not that helpful to have an extra cart pushed by Lucy in the grocery store!

September is Hydrocephalus Awareness Month!

Did you know that September is Hydrocephalus Awareness Month? While this has not been the recent focus of Lucy's blog, or a major concern during the first 2 months of her life, it is still a condition that she has and one that will need to be monitored for life.

Interestingly enough, one of Lucy's new roommates has Hydrocephalus and had a shunt put in shortly after he was born. He is doing great! We are so grateful that Lucy has not had to undergo that surgery yet!

For more information on hydrocephalus and to see stories of other living with the condition, visit http://www.facebook.com/HydroAssoc.

March 5, 2012 - Confirmation of the Diagnosis

If you remember, when we found out that our baby's ultrasounds was abnormal, Jason and I were about 1000 miles apart - neither one of us at home.

I was able to get an appointment on Monday with a perinatal specialist that I was referred to and Jason was able to change his flight home to join me at my appointment.

We sat in the ultrasound room with the ultrasound tech for a very long time looking at our baby on the screen and wondering if she was ok. She took us through a lot of measurements and told us a lot of things that it didn't look like our baby had. We were feeling pretty optimistic until the doctor came in. He sat down, looked at the monitor for a few seconds and declared that although the baby's development was on course at this point, she had a "severe case of fetal hydrocephalus." He then proceeded to point out a black mass of fluid in her head where her brain should have been.

The doctor asked if we had questions - which we really couldn't wrap our minds around. He outlined options for us - terminate the pregnancy, more test to rule out other birth defects, etc. I was prepared for the question of terminating the pregnancy; Jason was not. I had read about it on several blogs over the weekend. However, terminating the pregnancy was not an option in our minds. We initially decided to opt out of more tests at that point and take a wait and see approach. Most of the tests offered were to discuss causes and try to get a clearer picture of her possible prognosis. However, since none of these would change my prenatal care at this point, we did not feel the need to pursue.

We held most of our tears until we made it to our car. I will never forget what Jason said as we struggled to pull ourselves together: "She may not be perfect, but she'll be perfect for us." And he's right.

We knew that we would need an inordinate amount of strength to get through this journey and that we could not do it alone.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

February 29, 2012 - The Phone Call That Changed our Life

Typically, there is something exciting about February 29, right? It's Leap Day - and extra day in the year to spend doing something fabulous. February 29, 2012 found me in Austin, TX for a Health Care conference and Jason at the airport, on his way to Des Moines, IA for a wrestling event. I had just had my 20 week ultrasound 2 days prior.

I checked my phone between sessions and found a message from my doctor on my voicemail. I called Jason and told him I was a little bit freaked out because typically the doctor doesn't call - it's the doctor's office staff. I never understood the statement, "my life changed with a phone call" until I called her back.

She told me that the ultrasound results looked "abnormal." Of course, I wanted to know what that meant. I could tell the doctor was hesitant to tell me over the phone, but she told me that she wanted me to see a specialist - a "perinatal" - to look more closely at our baby's development. She was especially concerned with the size of the ventricles of her brain.

"What is that an indication of?" I asked.

And then she said the life-changing statement that still haunts me... "We think your baby has fetal hydrocephalus."

After hanging up, I googled hydrocephalus on my phone and read all sorts of extremely scary things about it. I called Jason shortly after and told him the news. I think we were both in shock and weren't sure what to do or say to eachother. The fact that neither one of us was home and that we were so far apart from each other made the situation even more difficult and we both suffered in silence for the next several days until we could be together and confirm the diagnosis.