Saturday, June 30, 2012

The "awesomeness" of D-day

Today we got to come home from our 2 week vent weaning in the hospital!  To say it was strange taking him out without his vent attached would be an understatement.  Mike went to go put the vent in the back of the van but on second though brought it to the front seat... just incase :).  I guess this will take a while to get used to.

Thanks to my dear friend Wendi, we had cupcakes waiting for us when we got home for a little celebration.  So, we got out the Hershey's syrup and had chocolate milk and cupcakes.  Ah, to have all of us back together again, so nice.  Here are some pictures of the greatness of tonight.

Thank you all so much for your support and prayers.  I always pray for Dominic's healing, if that is God's will, and as always he is so good and faithful.  I feel like we are starting a new chapter in the life of our family, one with all sorts of new freedoms.  10 whole hours a day he is off the vent... pure awesomeness (in the words of Anthony).

In Them,

Dominic after he tasted the icing of his cupcake... not too impressed :)

So happy to see their baby Bubba!

Friday, June 29, 2012

Much needed perspective

Having to be admitted to the ICU anytime we are here in the hospital is both a curse and a blessing.  A curse because it's loud, and light, and draining, but a blessing because it really gives me perspective when I need it.

Today I was getting upset, deflated, and down right mad with Dominic's fever and infection he has been having the last couple of days, which is prolonging our stay and making him pitiful.  On top of that the new equipment for the trach collar (the blue tube that gives cool mist to keep his lungs moist) was delivered.  There I was with a new BIG machine, loud, tethered once again, freedom taken away.  I hate that machine.  I was getting all upset, feeling sorry for myself, cursing the new unwelcome guest once again stealing our peace and freedom.  I was thinking when the respiratory therapist was telling me how important it was that it be on the floor, not backed against a wall about all the equipment we already have crammed into his little room.  Where exactly did she expect me to put it?  I needed to get the heck out of there.  So I left.

And that's when I got it: perspective.  down the hall there was a man standing in front of "the room"... the one they bring kids to, to well, pass.  The man was sobbing, his dad hugging him and the doctor was talking to him.  Next to him a little person (a sweet little girl with dwarfism whose mother I had befriended this morning and who I shared dinner with tonight) who had suffered a spinal stroke during surgery, paralyzed with a brain infection.  At the other end of the hall a teenager surrounded by 15 staff members, being intubated; walking down the hall a family, sobbing.  Next door to me a mother wailing.  Staff all around, calm but worry and alarm flashing in their eyes, some becoming aggitated, some running.  I had not seen the unit like this before, at least not with so many tragedies happening at once.

Immediately I felt ashamed for being so weighed down.  My "problems" seeming so small and insignificant.  Dominic is fine, alive, healthy... well, you know what I mean... acutely healthy.  Who cares if we're tethered part of the time!  I got a huge dose of perspective and remembered who I needed to be praising for this little saint and for our tiny trials.  It really makes you realize how your problems aren't that big... and lucky for us, when we're ready, He is always ready to fill that dark spot we created with light and thanksgiving.

Here's to a little dose of perspective.

In Jesus and Mary,

And because every post should have pictures...
Meet the future Bishops Jake, Anthony, and Dominic :)

After Easter Mass.  Yes, our daughter is quite a lady :/

Tuesday, June 26, 2012

Can I just say one thing...

In the spirit of keeping my promise of bringing you along on all the ups and downs of life with a little saint like Dominic, I just need to say one thing: grrr.  You'll be glad to know that despite what I'm about to tell you, I have kept my promise of not letting the She-Hulk out.  In the tough or stressful times the past couple of days (from fatigue of life in the hospital) I have been able to find complete comfort in the Sacred Heart of Jesus by trying to following the example of St. Therese, albeit most imperfectly (with lots of stumbles along the way, as you're about to see, sigh).

In this whole weaning process Dominic has lost a pound.  Not impressive, but still an indication that he is burning more calories breathing on his own than he was before.  So, in a moment of stupidity, I requested the dietician to come in to talk about tweaking his calorie needs.  Big mistake.  I guess she did not have time to look through his chart because she came in and informed us, "just so we know" that when kids are sick they sometimes loose weight.  Great, thanks, these parents of 4 had no idea.  Only he's not sick.  "Oh, well all the trauma he's been though..." stops and asks the nurse "we had to give him CPR, right?"  Uhm, no, wrong kid.  Poor thing, at this point surely she was embarrassed at her lack of preparation, so assumedly out of defense she said "Well then WHY is he in the ICU?"  He's on a vent.  There are only two places in the hospital vent kids can go and the other unit is full.  Blank stare.  "Well, all scales are calibrated differently, so that's probably what it is."  I chimed in "nope, he's been weighed on the same scale since admission."  She must not have heard... "the bed scale is different from the infant scale."  Yes, thanks, I know, this bed doesn't have a scale.  After another round of this and leavig the room to read his chart she came in: "Oh, the chart says he's been weighed on the same scale every time".  Yes, thanks, that's what I said.  "Well, he was needing to loose weight anyway, so it's okay."  To which I answer "great, thanks for coming by."  What else could I say?

Fast forward a few hours.  Our normal dietician calls and says not to worry about it either, he needed to loose a little weight.  Cause babies are supposed to be waifs.  Especially breastfed babies.  Right.  I ask her about what type of choleserol I should be adding to his diet, as the frozen breast milk will run out in less than a month and I was really relying on that for the grunt of his cholesterol needs.  Apparently they are not convinced additional cholesterol is neccessary any longer since they don't have a definitive diagnosis, so she says not to add any above what he is getting (opposite advice from a month ago).  OK.  Double grrr.  We KNOW he is not mylenating like he should and we KNOW he can't make cholesterol on his own.  We KNOW his optic nerves continue to shrink, as does the frontal lobes of his brain.  We KNOW his brain is not growing.  We KNOW a healthy brain needs fat.  So tell me again why we shouldn't be adding cholesterol?  Oh that's right, it gives you heart disease.  Well pardon me for being so blunt but when your kids brain is shrinking, MRI report shows his nerves are continuing to get smaller, he's not laying down the FATTY sheaths over his nerves like he should, and frankly we don't know how long we will have the pleasure of this little saint, who gives a damn.  And here's something else while I'm on it.  REAL food doesn't make people fat and sick, crap food does.  There, I said it.  {{Deep breath}}

So, after that explination she continues by recommending perhaps we try formula after the breast milk is done if he doesn't tolerate cow milk.  Do you know me AT ALL!?!?  Let me just say if a mom is gonna exclusively pump for almost a year and go through all the trouble to make everything from scratch for this child, to do all the detailed calculations for every single ingredient in his blended food, down to calories per milliliter (and sucrose, and cholesterol per ml) do you think I'll roll over and play dead that easy!?   Firmly, but politely, I say real people deserve real food and we will not even entertain formula for a non-infant.  We will just have to figure this out with food.  She agreed and we hung up friends.

Afterwards Mike congratulated me on being nice.  All we could do was laugh and remind ourselves why we don't normally ask permission for this sort of thing.  So, there you go, a day in the life.  We can't be too upset about anything right now though.  Our little man is breathing 10 hours a day off the vent and staying nice and pink.  AND we get to come home in 3 days!  As I write I'm asking myself  "is this how a saint would have handled this?"  Probably not.  But hey, compared to what I would have said a few months ago (think bag dog... another story for another night), I did reasonably well.  God bless sweet Dominic, and God bless those dieticians... I'm sure they have their hands full with crazy parents like us.

In Jesus and Mary,

Sweet Mary Grace loves her baby Bubba

Thursday, June 21, 2012

My favorite Day

I remember the NICU: Sweet baby Dominic lying in his little bed, limp and void of the color of health, monitors beeping, his little body off limits to all of me but my hands, my hands numb from leaving them draped over the plastic sides for too long.  Then the time came where we could hold him with nothing but two wires, still we were tethered, 5 feet was all we had.  Then the surgery and failed extubation, our right to hold him snatched away again.  Finally, a brave nurse let us once again cradle our little saint.  Tearfully joyful but frozen with fear of pulling his breathing tube out.  Finally, he was extubated, recovering, but still hooked to wires, leashed. 

After 5 weeks of not being free to walk our baby around, the time came when we got to bring him home.  I vividly remember how I walked with him during that week, cradling his little body in one arm like an experienced mother, having freedom to bring him wherever I wanted.  It didn't last long.  Before we knew it, we were back in the hospital, again he was held to the infant warmer by wires, then more wires for all the tests, and finally the tubes that breathed life into him.  Always, minus that one week at home, we have not been free to walk around with our boy, he has been anchored to the things I hate and love: glad they exist to keep him alive, but hate that he needs them.

Today was the day.  We held our boy, tether-free, for the first time since he was 6 weeks old.  He's almost a year.  He came off the vent for his trial.  He breathed.  I always expect him to stop, but he doesn't, he just keeps breathing.  I broke a little rule and took him off the monitors (with the understanding nod of the nurse) and walked.  And walked.  And walked.  We walked circles around our little ICU room, me telling him how momentous this moment was in the history of his life.  I tried to figure out how to carry him, he objected to some of the ways but we soon agreed and I held him close.  And walked.  Never in my life would I have imagined how good it is to walk with our baby.  How free I feel without the constant nagging fear of pulling his trach out if I take a step too far.  How light he is without pulling the vent, and oxygen, and back up oxygen, and suction machine, and emergency supplies.  Free.  If only he understood the goodness of this day.  Actually, maybe he did.  Once we found our way, he was quiet and looked, getting used to the faster pace I could keep with our new found freedom.  It didn't last for long, but that's okay, at least it happened, and for that single reason today is my favorite day.

In Them,

Mike walking with him for the second first time.  This is one happy Daddy.

This little cap on the end of his trach is called a HME, it replaces the blue tube in the last pictures by providing humidity.  And freedom.

About to take the pulse ox off for my second first time

Of course, his BFF had to have a turn too :)

There is so much I can say about this picture, but I don't think I need to. 

Monday, June 18, 2012

"I can do it all by myself!"

Do y'all remember that anxious feeling about the surgery I just couldn't shake? Well, God is always good and the surgery was cancelled literally minutes before they took him back. The surgeon came in for the last minute check and decided his diaper rash was enough to warrant cancelling the surgery. He said the risk of infection with perfectly clear skin was 2%, but on skin with any sort of lesions, such as diaper rash (which is where he would be cutting possibly) is 12%. So, either that is the coincidence of the year or divine providence. With this little Saint I vote for the latter. We went ahead and had the sedated MRI then he was admitted for vent weaning.

We have been weaning two breaths on the vent per day. We started out at a rate of 16 and each day we go down by two and monitor him closely to check for signs of distress for the next 24 hours. Yesterday he finally reached 10 breaths per minute from the vent and did great all day, so today was the day... we took the vent off completely for 2 hours. At first it seemed like he was a little scared, or maybe that was just me being scared, but soon enough he was just breathing like he had always done it. He was smiling as if to say "Look mom, I can breathe all by myself!"

I cried, and cried, and cried some more. To see him breathe, something we all take for granted, was the greatest gift this momma could ever ask for. I don't even care that he has the trach. I am just so grateful to have a breathing, pink baby.

We will continue to take him off, little by little, until we reach a point where he can not tolerate being off anymore then he will stay in the hospital for one more week to make sure he tolerates the new routine.

Thank you for loving our little man and remembering him in your prayers. God is always good and faithful!

In Jesus and Mary,

Here is Dominic rockin' the no-vent look!  The blue tube is hooked up to the oxygen and humidifier but he is doing all the work!

He was a little tired after the trial... totally chillin' out in momma's arms.

Here is a video of sweet man without the vent.  It's loud so turn down your volume (the noise is from the humidifier)  Enjoy!

Wednesday, June 13, 2012

Tomorrow is the big day!

Tomorrow is the day little sugar-cheeks-Dominic has his surgery.  The surgery was originally scheduled for this past Monday but was changed to Thursday, resulting in the l.o.n.g.e.s.t week ever.  Normally I am not too nervous about his surgeries, or about him being put under for MRI's, but this time it feels different.  I just can't shake this nervous/cautious/stomach in knots feeling I have this time.

Maybe it's the admission for 2 weeks after the surgery that has me feeling this way.  As you may know (but I'm sure won't believe :) I have a sort of reputation with Mike about becoming a certain less-known green super hero when I'm at the hospital... that's right folks, he calls me She Hulk.  So, in the spirit of charity, I have been praying constantly for graces to not morph into the gamma-ray saturated character.  My problem is I am always expecting a fight, which more often than not I get, so I automatically go into defensive mode when I cross the threshold of Cooks. Not this time though.  I am going to try my very, very best to be gracious and charitable, and kill them with kindness.

I've been reading St. Thereses' "Story of a Soul" lately and it is helping me to mentally prepare.  If only I had 1/1,000,000 of her charity and humility!  She saw her crosses (which were major) as blessings to be able to unite closer with Christ, AND she was truly joyful about having them.  I feel like a stubborn fish who won't stay in the fish tank.  Constantly jumping out, floundering on the ground, until I am inevitably rescued and gently placed back in, only to enjoy the warm waters briefly before I start it all over again.  This time, I will keep this book close, hide myself in the Sacred Heart, and try to be like The Little Flower (St. Therese) and be spiritually little.  How can Dominic do his important work of preaching when I'm the one everyone is looking at (because they think I'm crazy)?  [Side note: Dominic is named after St. Dominic who founded the Dominican order, the Order of Preachers... fitting ehh?]

So my dear friends, please pray for us this go-around.  Pray that Dominic's surgery goes well, that invading the scar tissue that is holding the tacks that hold his intestines in the right place don't weaken, that he handles the anesthesia well, that the MRI has good news for us.  Pray for him to be able to wean from the vent, at least for a few hours a day, for the other kids that they will handle this separation time well, for our whole family whom this sort of thing affects greatly, and for me... that I won't be a wretched She-Hulk but instead be an avenue of grace and humility that others can see His goodness through. 

This is gonna be a long 2 weeks...

Jesus, I trust in you.

Thursday, June 7, 2012

3 things: surgery, vent weaning, genes

Several months ago our geneticist, Dr. Kukolich, said she would present Dominic's case to the annual meeting of geneticist this spring.  We were excited and hopeful that maybe some other doctor out there would see him and have an idea as to what he's got.  Well, she did, and they didn't.  [I just want to say one thing: Really!  You get the most brilliant minds in America in the field of genetics together and they come up with nothing!  Really?!  Phew, I feel better now... back to my story.]  We did get contacted though by a certain physician who is the director of the Biochemical genetics lab and molecular and human genetics at Baylor and Texas Children's who is doing a joint study with John Hopkins who wants to enroll Dominic in a study.  For our part, we will get whole exome sequencing free (where they run his full genome panel).  Mike and I also have to give blood so they can run us.  The goal is to find out #1 what his mutation is, and #2 how it came about (which gene combination of Mike and I created this, or if that even played a part in it).  From what I've read this work is important to be able to diagnose other people and maybe potentially find treatments in rare genetic diseases.  Still some digging about what the research is targeting, but a promising prospect never the less.

On June 14th, Dominic will have surgery to bring his testicles out from his abdomen to where they should be.  There are three options here: #1 do laproscopic and bring them down in one surgery, #2 remove them if they are sick looking or atrophied, in which case he will have to be on hormone replacement for his whole life, or #3 do a two step surgery if they are near the kidneys.  The problem is they have been unable to find them with ultrasound studies, so he will be going in blind.  Our latest ultrasound this week was a flop too, just couldn't find those boogers.  The surgeon thinks they may be up by his kidneys, and if that is the case, this will be a two part surgery, with the second part happening 6 months after the first.  I am concerned about having to weaken the scar tissue that is holding his intestines from twisting (remember the surgery he had a while back where they un-twisted his intestines?), creating a life threatening illness.  Having this surgery though is crucial because when testicles stay in the abdomen for any period of time, the risk of testicular cancer goes way up.  Bringing them down doesn't lower the chance of cancer, but will enable us to feel them so we can keep a close eye on any abnormalities.

While he is inpatient, after he recovers from the surgery, we will stay in the hospital for a possible vent weaning trial.  How much more non-commital can you get here?  "Possible... trial."  Yes, I know, it may not work.  In fact Mike and really don't think there is much of a chance it will work.  Our best case scenario is being able to have him off the vent for a few hours during the day.  I have this fantasy of carrying him around the house, where ever I want to go, without lugging the vent and oxygen with me, worried I will step on his tube and pull his trach out.  Oh, just a few hours a day would be splendid!

Please start praying for some success for the vent trial and total success for the surgery, please!

In Jesus and Mary,