Tuesday, December 17, 2013

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...

Thursday, November 14, 2013

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,

Saturday, November 2, 2013

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,

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.  :)

Monday, September 30, 2013

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,


Friday, September 6, 2013

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!

5:00 PM Friday September 6
Mater Dei Catholic Church
2030 Texas 356
Irving, TX 75060

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

Saturday, August 3, 2013

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,
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.

The boy who stole my heart

It's not everyday that you fall in love.  It is one of those rare occasions that can most likely be counted on your fingers... the day you realized you love the man you eventually married, the day your children were formed in your womb, the day as a child you understood the attachment to your parents is more than a need for them, but a  genuine love, the day you become protective over your siblings and realize you would die for them, the day you give yourself to our Lord.  These occasions are few and far between and mostly always leave a lasting impression on your soul, a brand of sorts that never can be removed.  Yesterday was one of these momentous days in my life.  When Mike came home from work I revealed my confession... there is someone else now residing in my heart.  A baby saint much like the baby saint I live with, sharing the same strong name and the same purpose in this world- to reveal the goodness and glory of God through a sweet, short life that can only be "useful" in revealing the dignity of every single human person created by the Almighty.  My new love's name is Dominic K.  It only took a moment for him to brand his little self into my soul forever, for me to be filled with joy and happiness, hope and sadness, and motherly protectiveness; to realize I will love him from now on.

Baby saint Dominic K.
He shares a secret residence in my soul with my own Dominic.  A special place that combines love with worry, joy with pain.  A place the Lord gives us all to hold the most fragile, our children.  It is in this place that we can encounter God, in this place that yesterday I did encounter God.  Through this baby saint Dominic the strength and power and goodness of our Lord shined through.  Through this little man who will soon have the privilege to return to his Father, that Christ shows his goodness, his faithfulness.  He reminds us that this world is fleeting.  That our reward is not here, but in the next life with Him, where we will share eternity in his divine presence, praising him forever.  My new love, just as my own Dominic, is a light in this world that can do nothing but bring our minds to heaven.  We complicated adults are so very good and muddying everything up, making life so confusing.  Our two little saint Dominic's though give us clarity.  They show us the joy that is freely given by God and remind us we are only to be faithful and we too can possess that same joy, to a small extent here on earth and to the fullest extent when this life is over.

I wonder what our D saw... he was instantly happy and looking around when he was placed near his new friend.
I was struck yesterday at the beauty of God's will in our lives.  Watching Dominic's mom care for him  and his special sister Felicity, I saw the beauty and perfection of God's plan or our lives.  Not only for those of us with special babies, but for all of us.  It is in the mundane, ordinary tasks of daily life that we can give honor and glory to God.  By doing our daily work faithfully, however difficult it is, realizing that the work placed before us is God's will for us at this instant, we can praise him.  By not wishing for a different station in life, but by embracing the conditions we've been given at this very moment, we can consecrate, make holy, the ordinary daily tasks and give it back to our Lord as a gift.  I so often fall into the trap of wishing things were different, of become frustrated with the mundane chores, the routine, and day in, day out monotony of life.  I was reminded in a powerful way yesterday that it is precisely in the ordinary that I, that all of us, are being asked to do his holy will.  It is through this work that the Lord has given us that we can love him back in a concrete, tangible way.  For us momma's of baby saints, it is through our Dominic's (and our other kidd-o's) that we can fulfill his holy will. What a supernatural blessing and honor!  The very fact that the Lord loves us (the world) so much that he gives us glimpses into eternity through the gifts of special babies like this makes my heart flutter.  It is through the perfect little ones (both babies with and without special needs) that his simple, perfect, spotless love shines through.

Sweet Momma K lovin' on Dominic K.
With his mom's blessing, here is the younger of the two baby saint Dominic's.  It is my hope that his sweet face, his perfect existence will change your heart as he did mine, will help you to look toward things eternal, to not only tolerate the mundane of daily life, but live your current station in life in a way that you can give your daily tasks back to our Lord as a gift at the end of every day.

Dominic K.'s biggest sister and Mary Grace giving him love
Dominic's biggest sister may be the next Mother Teresa... God has given her the opportunity to learn to love in a very real, mature way with her siblings.
Little saint Felicity, Dominic's middle sister
"Hey-a buddy! Give me some of that milk!"
Dominic K's momma getting cuddle time with our baby D
Sweetest boy in the whole world :)
One last cuddle walking our baby D to the car
Sweetest Felicity taking a nap
Such a sweet little girl, big sissy M.
Baby Dominic K loves sticking his little tongue out at Momma K
Happy little saint :)
"Aha, so this is what a saint looks like"
Dominic K, Dominic S, and Felicity having some floor time
Saint Dominic, pray for us!
Totus tuus!

Thursday, July 11, 2013

Day 11... this is when it gets hard

A throw-back to the first 4 months in the hospital when Dominic first got his trach and vent.  He's come a long way, praise God!

The first week of an admission is pretty easy.  Everything is new, you've got enough energy, it's just easy to be nice.  Then you start to get tired.  The restless sleep catches up to you.  The un-natural splitting up of the family wears on all the members, especially the kids.  The little things that are done, or left un-done, at the hands of the hospital employees start to wear you down.  It doesn't take much to crack you.  The little things that are really no big deal are blown out of proportion and you start to feel on the verge of becoming a crazy lady... that mom.  Unfortunately, today I was that mom.

Last night the IV team came in to get a line started on Dominic for his broncoscopy this morning.  Each nurse tried twice and blew all 4 veins they tried.  I finally called the fourth try after she dug in his arm a good 30 seconds.  No matter how many times you see this done to your child, it never gets easy.  This from the girl who has treated kids with nasty, smelly wounds and burns with a stone-cold stomach... I tremble and feel faint and nauseous when Dominic gets an IV or blood taken.  But, you would be proud... neither nurse got punched, yelled at, or booted out of the door.  I've come a long way you see!  Finally just as we were getting ready to go down to anesthesia to see if they could get a vein, our nurse came to the rescue and got an IV started.  Dominic just cried through the whole thing and once it was finished and I picked him up, he passed out with exhaustion.

This morning he had a flexible broncoscopy in his room.  The bronch team filled the room along with nurses while we waited for the doctor.  I felt like a protective mama bear holding Dominic, refusing to let them have him until the doctor arrived.  I sang latin hymns to him while we waited.  Everyone was quiet and he smiled.  The bronch showed he still does have laryngomalacia but it is slightly better than last year.  This basically just tells us he still needs his trach, which we totally expected.

The rest of the day was hard.  Day 11 in the hospital is hard.  Dominic has needed oxygen (no vent though!) for the past 3 days and hasn't been able to maintain his saturation's without it.  This is no big deal I guess, at least he is still vent-free.  In the midst of a killer headache, lying down with my head covered b/c the light was hurting my head, the dietitian came in.  Poor girl, she didn't know what she was walking into.  Day 11 + throbbing head = not a happy momma.  Luckily for her I felt too bad to respond to her claim that Dominic was doing so well with his weight management because we had a dietitian orchestrating his menu.  I would love to have a blended diet-experienced dietitian helping us but alas, there are none to be found close.  When we actually hit a road block I'm going to need to go to Dallas.  I just nodded and slipped my head back under my covers and thought to myself "yep, because all the hard work we put into his food, the calculations we do, the close watching of his growth-velocity curve does no good to him at all."  Crazy.

But as all fairy tales end, so does mine.  My knight came to save the day.  Mike came up to the hospital and sent me home to rest and re-coop a bit while he's on watch.  Thank God for that good man... I sure do love him.

So, here's to another week and a 1/2 in the hospital.  I just keep thinking about the families with kids in for months at a time.  How do they do it?  How did we do it for 4 months?  I can't quite remember, but I do know we were quite tired but sustained by our amazing family and friends as supports.  We can never pay back the time spent, the effort given to us by our support system.  They visit, giving their time, they cook meals, they help with the kids, they pray.  That's how we did 4 months... it makes another 1 1/2 weeks look like nothing.

In Them,

Wednesday, July 10, 2013

Dominic Update- Yeah for breathing!

Because we have had a night nurse almost the whole time we have been home from the hospital after Dominic received his trach and vent, I have not had too many nights sleeping next to him.  You would think a baby with a trach would be quiet through the night but I have learned what he lacks in vocalizations, he makes up in beeps.  My little man beeps all night long.  High heart rate, low oxygen, apnea, too fast breathing, too slow breathing, apnea, leads off.  This monitor here in the hospital is loud too... like waking up to a fire alarm a couple of times every hour!  But, with all that being said, I'm happy.  I'm happy to sleep in the same room as my little man, to see his little feet with one sock on and one sock off rest on top of the bed rail.  I'm happy to hear him squirm and get mad at me when I touch him.  We're still not sure if his problems are genetic, but I can tell you one thing that IS genetic... his dislike of being touched when asleep.  Mike and I both don't play well with others when it's time to sleep... he inherited that from us!

Dominic has been off the vent since Sunday and has just been breathing like it's no big deal.  He has energey during the day which shows he is not too exhausted by the extra work of having to breathe on his own.  For the most part he has been able to maintain good oxygen levels (except last night he needed a little boost).  His good looks are enticing all passer-by's to coo and talk with him and all the nurses can't get over his bright white-blue eyes.

The plan so far is for him to have a bronchoscopy tomorrow where they run a tiny camera down his airway to check the progress of his trachea then on the 18th have eye surgery to correct his ptosis (droopy right eyelid), a MRI, an ABR (sedated hearing test), and nerve conduction velocity test.  This last test is to check how his brain receives signals from his nerves.  They will place electrical impulses on his feet (while he is sedated) and record what his brain does with those impulses (I think...).  This test is because he has hereditary spastic paraplegia (a genetic condition) that often results in the complete non-use of ones legs eventually). 

Anywho, there you go.  I've got a handsome boy, a happy man, an independent breather.  I'm one lucky momma. :)

In  and FOR Them!

Saturday, July 6, 2013

Vent Weaning Week 1: Success!

Dominic's new favorite toy, Moosey, b/c all stuffed animal names should end with "y"
As I type this blog, my little man is sleeping in his hospital bed vent free with his Daddy watching over him.  We were admitted Monday and have gone down on our hours on the ventilator by two hours each day until we came to today when we completed his last 2 hour stretch on the vent.  We will now leave the vent off completely and see how he responds.

I have no fears about him failing this vent weaning trial because so far he has rocked it like **insert your favorite rock star here**!  He has had a few times where his oxygen levels drop but they pop right back up without intervention... which technically don't count against him.  If he keeps going like he's going, we should be going home vent free within a week!  WooHoo!

I'm exhausted, and you're probably bored so lets just cut to the chase.  Here's what you really want anyway... pictures of the cutest trach baby in the whole wide world!  :)

His speech therapist and PT would be happy... eating mashed potatoes while in the standing frame!
Kisses to Moosey... I was jealous
Aunt Wendi giving him a bath (this is the best picture I could get).  Dom's got my Granny's legs :)
Everyone loves MiMi cuddles!

 Mary Grace putting her shoes on her defenseless brother

And... more Moosey love