Houston, we have a problem...

...And we're hoping you can help us out.  See, we have this sweet little man named Dominic that seems to be a medical marvel, or is it medical mystery?  The docs up here in ol' Fort Worth don't seem to know what in the world is going on within his cranium, so we're coming to you, hoping you can help.  An answer would be nice, or even a hint to an answer, or if you can't do that, maybe you can just say you've seen this before and it's no big deal.  Brains shrink all the time, after all.  And please, dear Doc south of us, take your time.  I've spent many hours preparing for this trip, was nice to people who didn't deserve it (I'm working on that) getting all his records in a timely fashion, and am fully prepared with a medical history typed out for you (Neurotic?  Nah, I say organized).  Please appreciate the insane amount of effort it takes to travel with our little man.  Do you realize how much medical equipment we're bringing with us?  We'll be transforming the Holiday Inn into a mobile ICU room, so just in case your ER fills up feel free to come on over.  In fact, we have so much equipment, we are trading cars with a sweet girl that calls you home, a Houston transplant that tolerates North Texas, cause she loves a boy who loves it here.  Well, maybe she loves it here too, but not as much as you, don't worry.  That sweet girl has the mother of all cars... a suburban.  Still, it'll be tight, but we can do it for 5 hours, you're not that far.

We're a little optimistic up here, though we are realist too.  We fully expect to be going to Boston soon when you say you have no idea, but we sure would be grateful if you could spare us that expense.  We're looking on the bright side of this trip and bringing along all 4 of the kidlettes.  That's right, 4.  Don't worry, they are very well behaved in doctor's offices and I promise they won't lick the neurologist (though I can not vouch for the examination table... it's on it's own).  Please don't be alarmed if one of them is upside down when the doc comes in, it happens.  Just be grateful if they are fully dressed and moderately quiet.  That's right, we're that family.   But after that, we're blowing off the Children's hospital and heading out on the town.  We're going to see what your great city has to offer, a mini-vacation if you will.

Be good to us Dear Houston, because you see I have this blog, and late at night I have a hard time controlling what comes from these fingers.  I sure would like to sing your praises as the great city that has the world's most amazing doctor that has an answer.  Not for our own sake, but for the sake of a little boy named Dominic.  The world deserves to have him as long as it can, he brings so much light.

We'll be seeing you in T-2 days.

In Them,
his mom

 His Sissy sure does love him...

...And most of the time he loves her :/

But what he really loves is riding in PawPaw's Big Red Truck

A year in pictures

It's hard to believe our little Saint Dominic is 1 year old now!  This has been both the longest and shortest year of our lives, but most importantly, this has been a year of learning, trusting, surrendering, accepting, and loving.   In his short life Baby Dominic has taught us so much: what it means to live, to be a person, to have worth, to suffer, to be joyful.  We have been destroyed, raised up, learned to fight, found our voice.  There have been times of utter dismay, brokenness, defeat but they are always followed by the graces needed to get back up and journey on.  We have learned foremost to not put off what is important.  We don't wait to do what God is calling us to.  We do it now, as best we're able, because our future is unknown.  Dominic has turned our lives upside down, and that's a good thing.  He is a soldier, winning souls, preaching without words.  How we ever deserved him is a mystery, but one we are so thankful came into being. 

 Immediately after birth, before we knew anything was wrong. 

This is the look any mother knows, a mix of joy and relief after a hard labor.

After a few seconds the midwife took Dominic from me and started bagging him.  The NICU team ran in and assessed him.  This is where the nurse started calling out his dysmorphic features, I knew.

Our first time to really see Dominic.  This is not disappointment,

this is me knowing our life has changed.  Mike later told me at this point he did not

know anything was wrong.  He just thought he had a hard time breathing at first.

 He was stabilized and brought to the NICU for a 1 hour observation.

That 1 hour turned into 5 weeks. 

Dominic after a couple weeks in the NICU, intubated after surgery

 Finally extubated with just a "whif" of oxygen, close to going home!

 Mary meeting her baby Bubba up close for the first time

(excect for his baptism when he was 2 days old)

 Home lasted 1 weeks, then back in the hospital. 

He's having a sleep study here, pre-trach

After he woke up with his trach.  We were in the PICU

for several weeks, well two, but it felt longer! 

 Up in the teaching unit, Mike, my mom, and myself learned how to care for Dominic.

We were admitted for a total of 10 weeks this time.

 Meanwhile at home, the other kids needed love too!  Our families and friends helped us so much

during this time, the kids were no worse for the wear.

 Dominicin his new wheels... and our first walk out in the hall!

 Our first walk around the unit as a family, oh happy day!

 Discharge day!  The friars helped us out and witnessed the

awkwardness that was getting him loaded for the first time.

 His very first car ride!  We weren't nervous...

We were petrified!  Everyone else was driving SO fast!

 Our first walk to my sisters house,

accompanied by my brother and niece Leah.

 Enjoying being home, ahhhhhh.

 Our very first dinner as a family, thanks to my mom's

yummy cooking!  As you can see here, Mike fell off

his rocker somewhere during this time and shaved his head.

I thought he looked handsome ;)

 MiMi learning the ropes of giving g-button feedings while I was driving.

I laughed so hard I almost crashed!  She on the other hand was not too

excited about being covered in my breast milk!  :)

 Baby Bubba getting some love

 Our weeks were filled with doctors appointments and tests

 Dominic holding his great Granny"s hand

 It's a tradition that every grandchild puts an ornament on MiMi and PawPaw's tree.

 What every momma loves, cuddling with her babies.

 ... And what every Daddy loves, sleeping with his baby...

 Brief admission for sickness... back to the PICU.

 Dominic being held by his Great Granny for the last time.  She passed away days after this.

This day brought her so much happiness before she went.  We miss you Granny.

 Dominic's first time in the back yard... crazy driver!

  In his bouncy seat

 So handsome with his old man hat on :)  Looks like PawPaw

 This year he made some best friends... the friars.  Admissions have their perks after all.

This was a sick admission, 7 days.

 His very first Easter!

 The right of every Daddy.  And just so you know, Mike doesn't always sleep,

it's just the the sleeping pictures are my favorite.

 This pretty much sums up our year... ICU hospital room with Mike drinking coffee :)

 Nana with a g-button feeding blow out... she smelled like broccoli... so funny!

 Lots of therapy.  Here is Dominic with his OT learning to play with toys.

 And more appointments.  Here is Dominic getting fitted for foot braces.

 This last admission, Dominic was trying to escape!

 And oh happy day, vent free!

 Mimi showing him outside during her first time to walk with him vent free

 And my favorite thing to do with babies... sink baths!  Here is Dominic's first one after his

big boy haircut.  Notice the delicious rolls :)

 And we're mobile!  Mike is looking tough rockin

out the sling in Hobby Lobby!

 Poor Dominic has a very good, but very relentless PT!

Notice his scowl... he was screaming at her!

And after his very first birthday party, wore out!

(the birthday party pictures will be posted soon)

So there you go, a year in pictures.  Looking through all these brings back so many memories.  It seems so long ago.  Here's to many more years with our little guy.  We want to thank all those who have supported us in the many ways we have been supported this past year: physically, spiritually, monetarily, babysitting-ly (he, he).  It is through you that we have been able to do what needed to be done, and not only survive, but thrive. 

In Them,

Dominic's mom

Lets face it, this just sucks

These past couple of weeks have been so good.  So good.  We are finding our groove holding and carrying little Dom around, and it is just perfect.  I have strained all sorts of back muscles but I don't even care.  I just carry him everywhere.  I've finally been able to put my sling to use with this one.  But as it always is with our little saint, the tides turn in an instant.

While we were in the hospital I went down and got a copy of his latest brain MRI.  And as always, I figured that I was way more concerned about what it said that the doctors were going to be.  I just take every little detail and mull it over, make up imaginary prognoses, and am just sure it means something way worse than it actually ends up being.  This time though I was right.  Last Tuesday we went to the neurologist for a follow up.  Have I told you how much I love our Neurologist?  In his own words, he "lacks all social skills," but he is the most compassionate, caring, and thorough doctor we have.  He has a little baby with Down Syndrome, he is "one of us" and can relate.  He came in looking worried and told us that he's been studying Dominic's scans.  His brain is shrinking and he doesn't know why.  He apologized and said how frustrated he was.  He said he will continue to look for a cause and try his best to fix it, or at least slow it.  And I believe him.

We have been worried about his ventricles (the fluid filled spaces within your brain) because they seem to be getting bigger, which normally is a sign of hydrocephalus, or increased water (CSF) on the brain.  Dominic though hasn't been having any of the usual symptoms of hydrocephalus.  Our neurologist said he feels certain now, looking at the MRI scans over time, that the ventricles are enlarging because the brain matter is atrophying.  Also, his brain stem is shrinking, particularly one tract that carries the signals for motor movement from the brain to the body.

How can this be!?  He is doing better with his motor control, with holding his head up and trying to balance some in sitting.  On his tummy he can bring his head to neutral and is even bearing some weight on his legs when he is stood up.  He communicates with his eyes and his smiles.  He is getting better!  How can he progress when his brain is shrinking?  I would like to say all this doesn't matter, but I'd be lying.  He is so very much alive, lying next to me kicking and snorting and smiling, but still I have this deep grief that continues to grow within me.  This anxiety that I continually give to God but it always comes back.  This deep pain that I just can't shake.  Perhaps it is nothing more than the usual worry a mother feels for her children.  Still, there's nothing to say but the obvious:  this sucks.

While we continue to try to find a disease process here (with a lumbar puncture done during his surgeries in August), we are going to start looking for a second opinion at another larger hospital.  Probably Texas Children's in Houston first, then maybe another even higher ranked one in a far off state.  We'll just have to see how it goes.  So, sorry to be Debbie Downer, but life with a special needs kid is just like that: up, down, up, down, and I'm trying to honor my promise of bringing you along on the ride.  After all, it's not everyday you get to see the inner working of a little saint's life.

But at the end of the day, we are grateful for him.  He is happy and loves life, and is always the light at the party.  The kids adore their baby Bubba and we are all so blessed to have him, however long that may be. 

Dominic getting his first steak!  Gives a whole
new meaning to "tube steak"  :)

MiMi got to do the honors.  He wasn't too impressed though.

"Mom!"  Dom riding his first (fake) horse at the Cowgirl Hall of Fame

Dominic and his baby friend, Bridget, having a deep conversation