Dominic's Terrible Two's

The most handsome little man in all the world

Until recently, I was convinced of the fact that having Dominic, the little saint that he is, excluded me from the right of passage every parents must endure, commonly known as the 'terrible two's.'  You see, all Dominic does is love.  He cuddles, smiles, sometimes coo's and "talks."  What could he possibly do wrong?  There are no temper tantrums, no "sizzling like bacon" fits, no arguing or screaming.  No, those are way too tame for our little man.  He has chosen to forgo such expected expressions of his two year old rebellion and opt for something a little more, say... original.  What our little saint does is far more dangerous: he pulls out his trach.  That's right, the little booger-lootsey pulled out his trach. 

I was working in the kitchen with him right next to me in his feeding seat when I froze.  A strange sound pierced me ears, a sound of forced air, like a strong wing being blown through a straw.  Instantly realizing what that sound meant, I dropped what I was doing and checked him.  Sure enough, there was Dominic, smiling mind you, with his trach out, struggling to get any air through his little collapsed airway.  I went into a frenzy, grabbed him and laid him on the kitchen floor.  I quickly realized I had no spare trachs with me so I scooped him back up and ran to his room, yelling for Jake to bring the suction.  By the time I had him on the changing table, he was beeping (his oxygen monitor) and was turning from purple to blue, on his way to grey.  I did a quick trach change and gave him the highest flow oxygen our liquid oxygen tank allows until he pinked up.  I scolded him as I stood there and shook "Don't EVER do that again" I said, followed with a immediate "thank you, Jesus.  Thank you."  The kids stood behind me, still as statues, eyes wide like a scared deer.  I let out a great sigh of relief and gave the kids a hug.  We talked about what happened and they told me they were scared but they were ok (except for Mary, who of course ensured me she was not scared at all.  sigh.).  We went about our day and finished getting ready for mass.  The rest of the day went on as usual.

I wish I could say this is the only manifestation of his terrible two's, but alas, it is not.  He has had several more episodes (though they did not contain the trach being pulled out).  He has stopped breathing a time or two and has required some quick thinking, stress filled interventions.  So what has he gained from these little escapades?  More vent time.  He has gone from the vent only at night while sleeping to the vent 12 hours a day and at all times when asleep.  Turns out, these aren't due to the terrible two's after all (well, except him pulling his trach out).  He was having more episodes of not breathing and of not being able to maintain oxygen levels because of something called residual lung capacity.  You see, he is not strong enough to breathe deep enough to keep his lungs inflated, which over time lead to decreased oxygen levels and lots of apnea.  This has been reversed by the increased vent time.  There doesn't seem to be any going back, not any time soon anyway, to the splendid days without the vent.  No, it seems our little saint's rebellion can only be satiated by that loud machine that fills our home with noise and beeps.  We are thankful however for that machine, however ridiculously difficult it is to transport, because without it out little saint may have had the rebellion of rebellions.  Here's to no more "terrible two's" for Dominic!



Some great pictures of our family vacation this summer.  Vroooommmmm!

Silly faces with cousins.

One little, two little, three little...
 

A new diagnosis and back on the vent

A few weeks ago we got a call from the genetics office saying our long-awaited whole exome sequencing results have finally come in (after more than a year) and they have a diagnosis for us.  Dominic has something called genitopatellar syndrome, an extremely rare, newly described condition.  Never heard of it?  Don't feel bad... the geneticist hadn't either (nor the neurologist, pulmonologist, etc...).  In fact, it has only been documented 18 times in the medical literature.  This is a disease where most affected people don't survive until birth, and and then the majority very shortly after birth.  Of the ones who do survive, most die in early childhood while there are at least 3 cases I know of who have survived into pre-pubescent years and the teens years.  The syndrome basically describes a bunch of common characteristics that all of the affected children share, such as absent or disfigured patella, severe mental retardation, lack of speech and walking development, hearing problems and a few more.  The problem is the list of problems that go along with this disease is no where close to Dominic's problem list, so we and the neurologist are convicted (along with a convincing genetic test) that he may have another disease called hereditary spastic paraplegia.  Tests are out on that one.  Our little saint is going to be published in the medical literature along with another boy who has been newly diagnosed.  His way of being a famous rock star I suppose :).

Of the kids who did survive to be born, all of the documented cases that I have found have died from apnea.  This is where our gratitude to our pulmonologist overflows.  We believe it is because of her aggressiveness in giving Dominic a trach and placing him on the vent that he survived.  That week we brought him home from the NICU, his apnea was getting much worse and quite frankly he shouldn't have survived.  He was turning blue and purple and once even grey.  We brought him back to the hospital where he had one very bad day on a regular floor where his oxygen went down into the teens (supposed to be 98-99%) before he was rushed to the ICU and given his trach shortly thereafter.  We know our pulmonologist's diligence and care saved his life.  Thank you, Dr. Dambro.

Remember this?  In the NICU, pre-trach.

Our one week at home.  Mary fell in love.

Back to the hospital... his first sleep study that determined he did in fact need a trach.



Dominic after receiving his trach and vent.  He was so little.  Our little crucified baby saint.

That same week, or maybe the week after... they are all running together... we received news that his home apnea monitor was running out of internal storage due to increased apnea.  Turns out it only alarms once the apnea reaches 20 seconds, but it starts recording at 16 seconds.  Dominic was having so many short apnea's (between 16 and 20 seconds) that the internal memory was filling up in about a week.  Upon finding this out we called the pulmonologist and scheduled a sleep study.  But in true Dominic form, he didn't want to wait.  After a routine sedation for a lumbar puncture and Botox (he fits in with the rich, bored old women now:), the anesthesiologist didn't feel comfortable sending him home, which earned him a weekend in the luxury resort also known as the children's hospital. (((On a side note, the anesthesiologist looked horrified as I described in a sort of laughing way how we are totally cool bagging him and performing life saving techniques and that it would be completely fine and safe to send him home- we could handle it!... he admitted him anyway)))  He had a sleep study on Monday which determined his apnea had grown worse and was now unsafe so he was placed back on the vent at night.



Mary again, ever the little momma, cuddling her baby bubba



The kids finding ways to entertain themselves in the hospital room




Dominic in his latest sleep study... I was lucky to catch a smile.  Nothing holds this kid down.



He was one agitated little guy... rough night for all.

So here we are... a new diagnosis that doesn't tell us much and progression of his apnea.  We are dealing with it all very differently: Mike in a very positive, faith-filled, in awe that he even survived pregnancy sort of way, me in my usual "I just need time" way, The boys in a "whatever God's will is" sort of way and Mary in a very excited way... because on the vent he can blow out birthday candles (we take the vent off and point it at the candle so he can "blow" it out).  Oh Mary.  In any case, God's holy will be done.

In and For Them,
Chasity

Dominic's Confirmation- joy and pain

There have always been times in my life where God has taken a hold of my heart and changed me.  Sometimes these times are small, insignificant events which last but moments or days, and other times these are substantial, life-altering times that re-form my most inner being.   The times my heart is changed only for a moment is not due to the lack of grace being poured out upon me, but rather it is cut short by my own stubborn disobedience to His Divine Will.  Thankfully God can even overcome this!   When He makes my heart fertile ground, the lessons stick, making a lasting impact that literally changes my heart so that I can not even recognize the old me before this event occurred. 

Two weeks ago we had the privilege of experiencing such an event when our little baby saint Dominic was confirmed in the Catholic Church.  This is a very special circumstance because confirmation normally occurs as a teenager when a person can make a complete, free choice for themselves.  But for Dominic, and for kids like him who are at an immanent threat of sudden death, God in his mercy gives the sacrament of confirmation through His Holy Church at a tender age.

The joy, the Presence, the gratefulness felt at that moment can not be described in human terms.  It is a feeling that still penetrates my heart of pure gratitude and love for our Lord that these words do no justice for.  But amid all of the triumphant praises being sent from my heart to His, a real, deep, burning pain enveloped me.  I was surprised at the sobs that came forth during the confirmation and especially at my real sense of sorrow and mourning that came afterwards.  I wanted to write this sooner, to take you all along with us, but I literally had no words.  I would sit empty, hurting, as if a part of me was being severed, in wonderment of why such a joyful occasion would bring such pain.  Finally after several days of subtle joy and abundant tears, our Lord revealed the source of this anguish.  Because Dominic can not speak for himself, Mike and I spoke for him, and in that moment gave him over completely to God as His soldier, His warrior.  My pain stemmed from the tearing away of my own will and handing it over to God, along with my beloved son.  In a tangible way, I gave Dominic to God and with this handing over came the realization that God will use Dominic to accomplish His will here on earth for only as long as necessary then He will bring him to Himself to begin his real work.   The mother in me cried 'No!' with every fiber of my being, but the servant of our good God said 'yes' with complete submission to His Holy Will.  This submission is what caused the physical pain in my heart.  Like a proud but sorrowful mother sending her son into war, knowing he is serving the greater good but also knowing he may not return, so was I. 

Since then, the pain has subsided and the wound has begun to close.  It is with deep humility and thankfulness that I recognize and admit Dominic is not mine nor Mike's, but we are only his care-takers.  He belongs to God and is doing His work here on earth.   I submit myself to God's will and God-willing, will be ready when he is brought to begin his real work in Heaven.  For now though, we just continue to love, and hug, and kiss, and snuggle this little saint living under our roof for as long as we have him.  God never forgets His children and in His great love and mercy has given us the gift of confirmation for Dominic through His Church.  To this I am grateful to the point of having no words, only silent praise and thanksgiving in the deepest recesses of my heart.  God's mercy endures forever; may His Holy will be done now and forever!

Totus Tuus,
Chasity



We are so very grateful to Msgr. Hart for being the hands of Christ and confirming our little saint and to Father Pio Maria for being Dominic's sponsor.  Dominic's new name after confirmation is Dominic Kilian Pio.  Kilian after the holy priest, Msgr. Kilian Broderick who married Mike and I and Pio after Saint Padre Pio of Pietrelcina.  Fitting.  :)

Dominic's Vocation Video

Hello faithful Dominic fans.  I have purposefully not posted anything in quite some time in honor of Saint Dominic Kouba whom my last post was written in tribute to.  I wanted him to have the top post for as long as possible and I was planning all along to wait until our Dominic's video was released.

What's that?  You didn't know he was a movie star?  Well, now you know.  Mike and I were asked to do an interview about Dominic's life to be shown at the pro-life banquet for the Diocese of Fort Worth.  We were invited to attend and his video was shown to over 700 people.  It was humbling, embarrassing, surreal, crazy and overwhelming.  We are so used to little baby D, his story and his life that we have moved past the hard emotions into everyday reality.  We don't see him as sick or different.  He's just Dominic.  It's normal now.  I realized though at the banquet what a strong impact he has on people when I looked around after the video to see people crying, grown men with tears on the cheeks, tough, weathered, aged men grabbing my arm choking back tears. I was especially moved by one particular priest who looked at me deeply and said thank you.  Dominic had preached in his silent, perfect way about the dignity of every human life... even lives like his and the people heard.

After the event was over a line formed of people waiting to see Dominic, to touch him, to talk to him.  One woman asked if she could touch his feet so I took his shoe and sock off and she savored the perfectness of his little foot, overly skinny from un-use, beginning to deform from his condition.  People were just drawn to him and we were reminded of his high calling, his vocation... which is to love.

Here is the video that was shown at the banquet.  It is 7 1/2 minutes long and there is an even longer one (the full length video) that hopefully we can post soon.  Please share it with as many people as you can- let's all help Dominic fulfill his calling, to proclaim the goodness of our Lord, through showing everyone who will listen his goodness and innate dignity.

In and for Them,
Chasity

http://www.youtube.com/watch?v=0q_WqfTvCXk&feature=youtu.be

A few clarifications about Saint Dominic Kouba

When I began the post about our newest Saint Dominic the date was September 5th, but when I finished it was well past midnight thus the date stamp on the blog reads September 6th.  There is a very important connection that must be made regarding the date he actually departed this world.  Saint Dominic Kouba joined the rest of the heavenly company on the morning of September 5th, 2013, the feast day of Blessed Teresa of Calcutta (Mother Teresa), to whom Dominic's mother has a devotion.  What kindness and mercy our Lord showed to Dominic's family to bring him home to himself on such an important date for the Kouba family!  Surely he was with Blessed Mother Teresa yesterday as they both celebrated their feast day!

Also, I have had several people assume this Dominic is our Dominic.  This is not our Dominic, but rather one of his most treasured friends.  They shared the same name and the same blessed simplicity and goodness however.  Saint Dominic Kouba has received his reward while our Dominic is still waiting in his most beautiful disobedient body here on earth with us.

Saint Dominic Kouba, pray for us!

Saint Dominic Kouba and our little saint Dominic

Heaven's Newest Saint- Saint Dominic Kouba

 

 Heaven glories in it's newest Saint while we still on earth mourn the loss of one of God's choosen  children.  Little baby Dominic Kouba has gained his reward for a life well lived- eternal life- yesterday morning.  With the permission of his parents I am sharing the information for his rosary and mass (see below) so that all who loved him, whether you met him or not, may come to celebrate and honor his life.  I add the following words on my own accord in hopes that they may provide some sense of comfort, not only to myself, but to all who love this perfect child.  It is my hope the following thoughts will be well received by our newest Saint's family...

When I spoke with Dominic's mother this evening I had the privilege of uniting in her suffering for loosing this precious gift of God.  As a mother with a child who could join Saint Dominic Kouba at any moment, I was flooded with the hot anguish of a life cut short.  But in that flash of deepest grief and sorrow, a light joy radiated in my heart.  A joy that once experienced can never be mistaken as coming from anyone but God himself.  Dominic has left his earthly mother for now, but is enjoying his Immaculate Heavenly Mother while he awaits the blessed reunion they will no doubt experience.  This life seems so long, especially amidst suffering, but really it is only a blink of an eye and we will again enjoy the precious gifts we have been entrusted with here on Earth.

Immediately after we hung up the phone the sorrow began to well up and run down my cheeks.  I could hear the world say such things as "why would God do this- why didn't he let him live?"  But I say it is in precisely times such as these that we are confirmed in our knowledge that our God is a good, just, and sovern God.  He gives us gifts without measure and sanctifies us so that we might enjoy eternity with Him.  It is in the purest gifts, such as Dominic Kouba, that God allows his mercy and love to overflow upon us.  It is in the eyes of a child such as he that we can marvel at the unquenchable desire our Lord has for us.  The very fact that we can hold perfection in our arms while awaiting our reward of being in the presence of Everlasting Perfection in Heaven confirms God's boundless love for us.  A child is not something to be grasped at, to be demanded when we want and for how long we want.  A child, every child, especially special children like our Saint Dominic Kouba, is the most generous gift we could ever hope to receive.  We accept these children on God's time and likewise we let go of them on His time.  It is in the earthly suffering He allows that we are thrown into the blessed crucible of His love to be purified.  It is only in His goodness that he allows His dearest one's to share in a special, intimate way in His cross.  His love burns so great that He even gives us as our own mother His Immaculate Mother whom He himself created to be Ark of the New Covenant. It is with this mother that we can unite our pierced hearts, groaning in pain but with full knowledge of the paradise that awaits us.  Oh what a privilege it is to be united to Them!  But for now, as we mourn in our frail human spirits, we find it difficult to fathom and perhaps even accept God's perfect will.  God asks us to trust him in all things... the easy, the hard, the joyful and the painful.  And so, through the intercession of Heaven's newest Saint, may we all gain the graces from our Lord to not only accept with strong hearts and trusting souls God's holy will, but trust in the fact that we will, God willing, one day share with Saint Dominic Kouba the beatific vision he is now beholding.

Saint Dominic Kouba, pray for us!

Rosary

5:00 PM Friday September 6

Mater Dei Catholic Church

2030 Texas 356

Irving, TX 75060

Mass

10:00 AM Saturday September 7

The solemn Missa de Angelis (Mass of the Angels) will be sung.

Mater Dei Catholic Church

2030 Texas 356

Irving, TX 75060

Surgery, tests, and the gift of suffering

(((Uhhh, apparently I wrote this while in the hospital and never published it.  Sorry :/  Better late than never I guess!)))

 



Dominic worn out while getting an EEG to check for seizure activity

Dominic is coming along quite well.  We are now in week 3 of this admission and he is doing pretty well so far.  He is still off the vent but is now needing supplemental oxygen.  Not much, just a whiff... just enough that we'll have to lug that big ol' oxygen tank around with us.  But, no complaints here, at least he is still breathing on his own!  He has also had apnea when asleep so at some point this week we will be having a sleep study to determine exactly how often and from what location in the brain the apnea is originating.  The results of this study will help us determine if we will continue off the vent at night or if he needs nighttime ventilation again.  God's will be done.

A perk of the hospital life: sitting in your baby lazy-boy watching a baby movie :)

Tomorrow Dominic will have his surgery, MRI, ABR (sedated hearing test), and nerve conduction velocity test (to check the progress of his hereditary spastic paraplegia).  So, start sending those prayers this way!  I'm going to be sure when they need to start his IV tonight that we avoid the issues we had last week and forgo the IV team- I want a plain ol' floor nurse- they seem to be a better stick.

As you may have picked up from my *subtle* distress on my last blog, living in the hospital away from our other kids and Mike is trying.  Thankfully I'm married to the best man I know and he took over for 4 days so I could rest and gain some perspective.  It was awesome to be with the big kids, my sister and her family, and my parents in Oklahoma for a family reunion.  We got to see extended family and the kids literally wore themselves out swimming and playing with their cousins.  It was a nice break- much needed.  A break from the hospital is always therapeutic, helping you to once again be charitable and patient with the tiny annoyances of living there.  It is not big mistakes or blatant transgressions that get to you at the hospital, it's the everyday annoyances, the tiny pin-pricks that build up over time.  Suddenly you look up and something the size of an ant suddenly looks like something the size of an elephant.  Then you become one of "those moms,"  and nobody wants to be one of those. 

Something that has helped this admission (uh, except for that one day when I wrote that blog... sigh) is reading this book titled  "He Leadeth Me" by Fr. Walter Ciszek.  He is a priest who was arrested in Russia and held for 15 years, without anyone knowing what happened to him, all the while suffering in prison and labor camps while finding God's will in the whole matter.  I read something yesterday that struck my core.  Amid the horrors of hard labor in a prison in Siberia he realized that what he was presented with that day was God's will and it was his job as a priest and Christian to consecrate that day, that situation and give it back to God.  He says he learned you are not to endure your daily trials, your monotonous work, your unfair and difficult situations, but rather you are to embrace them with full knowledge that what your are enduring is God's Most Holy Will, a gift He has given you to bring you back to Himself.  I can see that truth in the daily grind of hospital life, the daily rituals of care for Dominic, lack of restful sleep, or life with a child such as he.  This is not a life to be endured, simply to 'get through,' rather this is a blessed life where in His goodness our Lord has given me these trials as gifts.  Gifts, if I accept them, to be given back to Him and along with it a little piece of myself until all that remains in me is Him.

In and for Them,
Chasity

Thanks to one of my PT friends who spoiled me with a box of Cheeze It's yesterday, Dominic had his first taste- he was a fan.