Tuesday, November 17, 2015

4 years- an overview

We re applying for a scholarship for Dominic to get hippotherapy (physical therapy on a horse).  I had to write a synopsis of life with Dominic and thought I would share it with all of you good people.  St. Dominic, pray for us!


Our fourth pregnancy was met with great excitement and anticipation by my husband Mike and I, as well as our three young children Anthony, Jacob, and Mary.  We longed for another baby and were over the moon that we would be entrusted with another soul!  The pregnancy was a normal one and all was well, or so we thought.  What we didn't know was that our newest little baby, who had a genetic disorder only described by doctors 18 times ever in the medical literature, was about to change our lives forever. 

It was immediately after birth that we knew something was wrong.  The baby was pale white and limp.  The midwife quickly started bagging the baby and before we knew it the room was flooded with hospital staff, all trying to resuscitate this little life we had named Dominic.  The NICU nurse started calling out abnormal features such as "small, low ears," and "flat bridge of nose."  It was at that moment I knew something was wrong.  You see, I am a pediatric physical therapist and I know just enough to recognize the signs of a genetic disorder.  Dominic was whisked away and I was left in the bed, shaking and scared. 

The next 5 weeks were the most trying of our lives thus far.  Dominic had his ups and downs, was intubated and on a ventilator to maintain life.  He had a surgery to fix his malrotated intestines and had to get a g-button since he could not eat by mouth.  He had several MRI's of his brain which showed a very abnormal, small, simple brain.  The doctors told us we would have to bring him home to die.

To everyone's surprise however, he puled through.  He eventually got stronger and was able to breath on his own.  After 5 long weeks we brought him home!  It was the most joyous week of our family's life!  The night before we brought him back to the hospital (6 days after we brought him home), he stopped breathing 8 times.  He was connected to a pulse oximeter to monitor his oxygen levels and heart rate and an apnea monitor that would alarm when he went without taking a breath for 20 seconds.  This was the worst night so far so the next day he was re-admitted. 

It was determined he was having seizures and terrible episodes called "dying spells" where he would pass out and stop breathing. The decision was made at that point that he needed a trach (an artificial opening in his neck) to open his airway and help him breathe.  After the surgery however, the spells continued and he regularly would stop breathing.  He was placed on a ventilator which he would remain connected to for over a year.  After 3 long months in the hospital, we were finally able to bring our baby home again!  This time however, we weren't just bringing a baby with special needs home, we were bringing a mini ICU home.  He had several machines that went with him everywhere, including a ventilator which breathed for him, the pulse ox, the anea monitor, the feeding pump, an oxygen tank, and a suction machine.  We also had to always be prepared for an emergency where the trach would come out or he would stop breathing.  We carried extra trachs and an ambu bag incase he needed to be resuscitated.  We now had nurses in our home helping us.  Our privacy as a family was destroyed as we learned to live with these strangers in our home.  I remember the heart break of seeing a woman I didn't know holding my baby, taking care of my baby, cuddling my baby so I could tend to the other kids and the needs of the home.  I felt like a visitor in my own home.

Through all of these  extreme trials, Mike and my faith in God grew indestructible.  There was nothing we could do but trust.  Even amidst heart break and sorrow, pain and sleepless nights, our Lord taught us to trust Him.

Eventually, we got used to our new normal.  The other kids adjusted to life with Dominic, life with nurses and alarms, and therapists in and out.  We figured out how to remain strong, to keep the faith, and not to let the balls drop.

Sometimes though the balls did drop.  I remember one Thanksgiving morning, about 6 am, I was in the kitchen making pies.  I heard alarms sounding so I ran to his room to find him limp and gray.  I grabbed the ambu bag, applied oxygen, and started breathing for him.  I went into emergency mode, which we've learned to live with always lurking in the background.  The numbers on the pulse ox showed he was almost gone.  His blood oxygen was at 14%.  Either we react, or he dies.  We did what we do and brought him back to us.  Afterwards I went back to finish my pies, shaking horribly and remember thinking life isn't supposed to be like this.  How do I go on making pies when I just saved my baby's life?  But I did.  Life doesn't stop. Mike and I hugged and continued on.

These events have been speckled throughout our life with Dominic.  Tragic events.  Frantic trips to the emergency room.  Emergency surgeries (12 in all).  Long hospital stays with the other children hanging in limbo, going from place to place, trying to make our "normal" as normal as it can be. 

Through all the stress, the trials, and the tears I can say we wouldn't change Dominic or our life.  I don't pray for him to be cured because I know he has a greater purpose than we understand.  A wise, old priest told me once that God doesn't make mistakes and I believe that to be true.  I pray instead for his life to be one that completely glorifies God.  That through him we can all become better people who love and serve, and wear ourselves out for others.  That through him people can come to know God and to let go of hurts and pains.  His life is not without purpose.  I would say in fact that his sufferings, his pains from surgeries and recoveries, are more fruitful than all the good works you and I could perform.  By his inability to hate, he teaches people how to love.

Dominic is now 4 years old and has overcome so much. Still, he can not talk, can not walk, can not sit longer than a couple minutes.  He can not eat and uses a ventilator to breathe 1/2 of the day.  Oh, but he can smile.  He can love.  He can fuss and yell when his physical therapist puts him in standing.  He can yell louder when she makes him walk.  He can let his speech therapist know when he is feeling like a toddler and doesn't agree with any of the fun activities she brings.  He can tell us when he is happy.  He laughs when we read him books. 

From the doctor who told us to bring him home to die, to now being able to make a choice between two pictures and hold his own head up, he has overcome monumental odds.  He has so much potential locked in his little broken body, we only need to let it out.  If we are granted this scholarship, we plan to use the money to pay for hippotherapy lessons.  It is my hope and the opinion of his physical therapist that therapy on a horse will strengthen him and may eventually lead him being able to walk with the assistance of a mobility device.  Also, this therapy will help his mind to awaken and make him better able to communicate with and participate in his environment.

I thank you for your consideration and faith in this little boy who gives big hope.

Dominic's mom,

Sunday, November 1, 2015

Dominic's little cross- a guest post by Dominic's Daddy

What follows is an e-mail my husband Mike wrote to our family and friends in the wake of this latest emergency with Dominic.  It was so beautiful and poignant I wanted to share it with all of you as well. 

Last Wednesday night Dominic turned pale while, rolled his eyes back into his head and passed out.  Scary as this may sound, it is not an entirely atypical response from him, but usually indicates sickness or severe pain.  Right away, he began taking fewer breaths and was fading fast so I rushed him to his room, hooked him to the vent and gave oxygen and a breathing treatment.  I know this sounds dramatic- like call 911 dramatic- but this is life with a child like Dominic, you learn how to deal.  He was stabilized and asleep so we didn't bring him in because the vent was keeping him safe and he was otherwise asymptomatic.  The next morning however he looked even worse, had a high heart rate (also indicative of pain or sickness), but this time he had bile coming out of his g-button- the sure sign of a bowel obstruction.  Immediately I called my mom and had a mini break down- nothing like her voice to crush my hard exterior, exposing the raw nerves lurking beneath. 

I paused a moment and looked into his face, so innocent and fragile.  I was taken back by the reality that his life was literally in my hands.  A terrible and great responsibility not suited for a mother.  I gave myself just a moment too long to linger and I started to loose my focus and composure.  Luckily his nurse saw and scooped me up into an encouraging hug.  I shook from the sight- I will never get used to seeing him so sick and limp.  I swallowed the lump in my throat and carried on.  We decided to transport him to the hospital ourselves instead of calling an ambulance because hey, I've transported worse, and I thought an ambulance would be too scary for the kids in a situation that I knew we could handle for a little while longer.  They by the way were eating cereal, every now and then greeted by their mom wearing a plastered smile so they wouldn't worry too much.  My mom arrived for the kids just as we finished gathering his supplied to go and we were off to the ER.

As usual, we were taken right back to a room and after hours of testing, the physician confirmed what I already knew- he did have another bowel obstruction where his intestines twisted on themselves.  Once the diagnosis was made, things went fast.  His surgeon was briefing with the ER doctor while he was driving in and all the wheels were turning.  This is an emergent situation as it can lead to death fairly quickly if not treated.  Our capable surgeon rushed in and he was in the OR shortly after.  What follows comes from my amazing husband.  Who knew when God brought us together that sweet, cute boy I fell in love with would turn out to be my spiritual beacon?

From Mike:

As some of you may have heard, my son Dominic had to be admitted to Cooke Children’s Hospital for emergency surgery for an obstructed bowel.  This is the second of such surgeries and the third on his intestines.  Due to scarring from previous operations, his intestine twisted on itself causing a blockage which can be fatal if not caught in a timely manner.  The surgery was a success again due to the careful attention and skill of Cooke’s surgeons.  So, I found myself sitting by Dominic’s bedside yet again as he suffered and clenched with pain from the large incision on his abdomen.  Being in this position is one of the hardest things to do as you must stand by and just try and comfort the one you love while they suffer.  Each time this has happened with Dominic I have grown closer to Our Lady who stood by her son while He suffered and I come to better know Him, who suffered a horrifying death for you and me….by name.
This time, however, has been different as myself and our three oldest kids contracted a stomach virus to suffer along with Dominic.  In God’s mercy, Chasity was sick with the bug earlier in the week and is able to take care of our youngest, Kolbe, and sit with Dominic as he recovers.  When I began feeling ill and my energy began to drain from my body, I realized that it was a unique opportunity to offer this little suffering to Christ and unite our discomfort and pain through Him for someone in particular.  This is what our age old church calls redemptive suffering and in particular was described by St. Paul when he wrote “Now I rejoice in my sufferings for your sake, and in my flesh I do my share on behalf of His body, which is the church, in filling up what is lacking in Christ's afflictions” (Col 1:24).  What is lacking in the suffering of Christ??  Does this mean that Jesus’ death was close, but not quite enough, to make us right with God?  No.  Jesus’ death and resurrection was enough, but Scripture reveals that there is still a crucial role for you and me to play in the amazing work that is Christ’s redemption of the world.
For many, suffering is evil and must be avoided at all costs.  Faith reveals to us something different, it reveals that the most active time of Christ’s life was when He was hanging on the cross, suffering for you and for me, offering His life for the whole world.  Jesus’ suffering wasn’t something that happened to Him.  Rather, it was something that He willed for the redemption of the world.  This changes everything!  For those that know Him, he shows us how to suffer and participate with Him in His redemptive work.   
This is not to say that suffering is good…it’s not.  God never intended this in his plan for us, but due to the rebellious heart of his creatures, it is here.  The painful reality is that suffering is something each and every one of us must deal with.  Often.  But whenever it comes, however it comes, we have a choice:  I can either waste it or I can use it.  I have taught this great truth to my kids, and even though they feel horrible, when they say out loud for whom they are suffering, I can see a physical difference in the way they carry themselves.  I wanted to share this with you all since Dominic’s emergency has made me slow down and contemplate the meaning of suffering.  I am convinced that his mission is to lead us and others to Christ, and he is succeeding in his mission once again.  We have had an out pouring of prayers and support, which has been overwhelming.  Please keep Dominic in your prayers for a speedy recovery. 
Our Lady of Sorrows, pray for us!
Sacred Heart of Jesus, Have Mercy on Us!

Thursday, June 4, 2015

It's been a while...

In case you've missed that past 5 months- and no doubt you have, no fault of your own- here's a brief re-cap:

The "Easter Bunny," (aka PawPaw) gave us a bunny... without prior parental permission... because we "always say no."  So, there's that...

Dominic loves his baby bubba Kolbe

But Kolbe sometimes tortures Dominic... and does mean brother things like pull his trach out... cause we like to live life on the edge.  Sigh.

Kolbe wore his first pair of shooting ear muffs (I sound like such a girl right now- I don't know what the stupid things are called) to watch daddy do a SWAT competition.

...And Daddy is kind of a stud...

...Cause he shoots stuff and climbs high things...

...and then flips over them like it's nobody's business.

Dominic had a power wheelchair trial where he got to try out using a power chair for the first time!

I had to help him find the joystick, but once I did...

He was a holy terror.  You can't see his face right now, but you can see his huge cheeks in an all-out smile, getting to control where he goes.  He turned himself in circles and was able to drive straight several times. 

So, next time you come to our house, we may or may not have drywall... it's over-rated any how.

Dominic is getting Kolbe back for pulling his trach out.  "Take that Bubba!"

Dominic has been working so hard in therapy.  Here he's working on standing with the best PT in the whole world and his sweet Nurse Krystyn.  Clearly, he's revolting- look at him screaming at them!

And Kolbe is getting huge- how does that happen!  This is him trying food for the first time.  he hated it.

Dominic is kneeling in therapy and jamming to old country- his favorite singer is Johnny Cash, thank you very much.

He's got such a sweetness about him and he works so hard in therapy and school, he smiles even with the really hard things, except for standing.  He screams with standing.

Finally he gets to sit down- look at the relief and happiness on this boys face!

And this happened- cuteness

Best friends.  Dominic will reach for Kolbe and if Kolbe gets a hold of Dominic, he will 1.) try to eat him or 2.) pull his hair or trach

But sweet Dominic always forgives him :)
So, there's the briefest five month re-cap ever.  I've missed all of you and I know you have missed sweet Dom, so I'll be back real soon. :)

Saturday, January 24, 2015

He's here!

Our family is overjoyed to announce the newest Short baby, Kolbe Francis, born December 22nd, 2014.  We were prepared to receive this child with grateful hearts despite any health complications he may have had, but in God's infinite mercy Kolbe was born completely healthy!  When he was placed on my chest pink, breathing, and eyes wide open, Mike and I had the greatest relief of our lives.  We have been blessed and taught so much with our Dominic, but man is it nice to have a healthy baby.  What a joy it is to nurse, to have him home with the family, and even to hear him cry.  More on all that later... for now, here he is!
Pink and alert right away

We thank the Lord for His goodness and pray that this little soul grows to be a great lover of our Lord, His Church, and His Mother, just like his name-sakes.
St. Maximilian Kolbe and St. Francis, pray for us!