Today we met Sam

The novelist who secretly resides in my brain , the one who turns even the most mundane daily tasks into intriguing scenes waiting for publication, was working full force today.  He (I like to think my imaginary author would be a he... not sure why...) was holding a full fledged debate on the practicalities of this venture we were about to undertake, casting doubts about the amount of people in Target and Chick-fil-A, the looks we would no doubt get (both curious and empathetic), and even the unrealistic mean things strangers would say or think.  He held articulate arguments of why it is just too much to get the wheelchair out, then back in, then back out, every time having to take it apart.  It's just not worth it.  Luckily, when someone tells me I can't do something, I get even more determined (thank you mystery author-man).  If only you could read the on-going biography in my head... it sounds so much better in there, never quite translates onto paper as it should.

So, there we went, 4 kids, a vent, oxygen, and a nurse, out on a trip to Target.  I could feel some looks from other shoppers, but not as many as expected.  I didn't make eye contact, just felt a little weird I guess.  Mr. uninvited author chimed in mockingly "wow, look at that lady with 4 kids, and all so young, doesn't she know where those things come from!  Oh and look at that one, how sad."  To which I secretly replied "shut up brain-author man."  He was making things out to be much bigger than they were.

After our expedition around the store to gather a few necessities, we loaded back up in the car again and I sat in the front seat, already tired, a bit defeated.  It was 1 o'clock and the kids hadn't eaten lunch so I was going to drive through to get them some grub.  While in the drive through lane Jake said "but Mom, aren't we going in?" (dang that playground in there!) in his best pathetic voice.  Alright, he got me.  So, piled back out and in to the restaurant we went.  I felt some looks, but thankfully my sister was there with her kids!  I went to a table and parked our brood when the man sitting next to me looked over and said "my son had a trach, he just got it out last month."  Wow.

Up walks Sam.  Sweet, sweet Sam.  We introduced Sam, who is 3 years old and smart as a whip, to Dominic.  He stood and looked at Dominic curious, wanting to get ever closer.  We let him get in right next To Dominic.  He, whom himself has some physical abnormalities and other problems, innocently asked "what happened to him?"  That's why I love kids, they'll say what adults want to say, but won't due to unsaid societal rules.  So, I explained all about Dominic, how he can't breathe well so he has the trach (just like Sam used to), showed him the vent, which he thought was super cool, showed him our emergency ambu bag that he squeezed and squeeled "I've got one of those!"  I told him he was just like Dominic with his glasses and showed him the hearing aides.  Explained what the wheelchair was and what it was for.  My sister was trying not to cry, so was I.  I did a better job than her.  For about 10 minutes, Sweet Sam just looked at Dominic, who for the first time since we left the house rewarded him with a big grin... almost as if he were saying "hey, you're in my club!"  Like he knew someone just like himself was standing there.

After Sam left, my sister, a softie at heart, had to leave because she was crying.  We both saw the future for sweet Sam, one of the small ones of God.  I saw how he would overcome many hardships to become something great, someone who would do good in this world.  It would be through his many trials in life, with shunning from society for his deformities, that he would grow strong and courageous, determined to make a difference.  I saw his Dad, who like me, felt alone but thankful.  A quick chat amongst us revealed a certain knowing that only us parents with these special kids can recognize, or ever possibly understand.  A certain undercurrent of pain mingled with hope, uncertain-ness, joy, and worry that is ingrained in all parents at the moment a little life enters into it's mothers womb.

I gave him my number, maybe one day Sam can come play, can play with my big boys and be close to a kid just like himself.  I would say this outing was a success.  Thanks Sam.

New Eyes and Ears

Caution all you parents of baby girls!  There's a new hunk in town, sporting his new eyes and ears.  He is sure to woo any unsuspecting drool-maker with his handsome looks and winning smile... the glasses and hearing aides just make this little man that much more irresistible!  (We can not be held responsible for baby-crushes).

We are getting used to the hearing aides, which we have had for a little over 2 weeks now, and are trying our best with the glasses, which we have had for a little less than 8 hours. He wasn't too happy when we got either one, but in time, he has adjusted to the hearing aides and we are able to see a difference in how he responds to sounds.

Camo for Daddy.   The bad part is we loose him all the time now ;)

The glasses were not a fan-maker for the first hour, but as soon as we got home and I laid him down on his little mat, he started smiling and looking around. It actually looked like he was focusing on things, and enjoying them! Amazingly enough, he hasn't tried to pull them off too many times, and tolerates them sitting on his nose well. Enough with me blabbing... here's what you really want to see...

S.W.E.E.T.E.S.T. boy in the world!

learned my lesson... next time get the anti-glare coating... doh!

Best 10 things about our ICU stay

Last night we got home from a 26 hour hospital stay, not that I was counting, to get a 24 hour video EEG done to check for seizure activity.  Because our sweet man in on a vent he can be admitted to only 2 places in the hospital, the TCU (where we were for months after the trach) or the ICU. This time we were in the ICU (oh, how I miss the niceness of the rooms in the TCU).  Our room had curtains, not walls, which makes a hospital stay even more interesting. Here is the best 10 things about our stay in the ICU:

#1.  You have countless opportunities to work on being kind.  Sometimes you fail, like when I told the sweet night nurse, in a less than kind way, that my son's name was Dominic, not Dominique, then followed up with a quick "he's not a black girl." 

#2.  You have even more opportunities to swallow your pride and apologize... see #1.

#3.  You learn to be gently assertive when questioning medical authority.

#4.  Your neck gets a work out when your sassy girl surfaces after the said medical authority proceeds to tell you she has worked there 13 years, how dare she be questioned. 

#5.  You learn when to stop talking about why said authority must be questioned (see #'s 3 and 4).  This realization is usually gained when you notice the stares of surrounding nurses and parents, all of which are looking a bit uncomfortable.

#6.  In case you had one of those rare wonderful high school experiences, you get to re-live it when you shower with your flip flops on in the community showers, just in case, in the most rarest of cases, the cleaning staff didn't get all the "fungus among us" up off the shower floors.  The water pressure is awesome though...

#7.  You learn humility as you watch your waistline expand from the tasty hospital food.

#8.  You get to go shopping to accommodate your new muffin top! 

#9.  You exercise creative thinking as you imagine the choke hold you'd put on the phlebotomist when getting blood from your sweet baby.  This is usually always followed by a wave of self control by swallowing that motherly instinct to deck the sweet lady poking your baby.  repeatedly.  then digging around.  then to the other arm.  wooo, finally got it.  oops, hope it's enough.  Sigh.

#10.  You learn alot about yoga, nursing school, tattoos, tv shows, and current fashions from overhearing the nurses conversations (remember, no walls, just curtains) when you are doing the feeding and caring for the patient.  It's all good, I would do it anyway, which is probably why they don't even try most of the time.  Poor things, they just can't win.


Though all of this did happen during these 26 hours, I must say that the real positive to being in the ICU is you get to see that you're not alone (babies and kids on vents everywhere).  And you get the sharp realization that no matter how bad your kid has it, there is always someone who has it worse.  At least my baby smiles and is full of life.  And I get to bring him home.  It's hard to count your blessings sometimes, especially when the stays get long, but when I get down I just look around and know I'm in good company.  Other parents all around us, so close, but recluse in their little curtained space keeping vigil.  And on rare occasion, you connect and exchange a fleeting second of knowing.

Here's to no more stays for a while.  Amen.

In Jesus and Mary,
Chasity

Sweet man getting his weave on... not happy about this!

Baby Food!

Yesterday was homemade baby food day!  I am such a procrastinator I put it off until the last possible moment, until only 1 jar of baby food remained.  My life story... waiting til the last minute to do something important... but hey, I always did work best under pressure.  Here's to encouraging all the oral feeding momma's and medical momma's out there to give this baby food thing a whirl. Start small and gain confidence.  It feels so good knowing you are feeding your child something YOU made.  Even if the rest of the house is upside down, you have other children dangling from the living room fan, a pile of dirty dishes in the sink and your laundry room has runneth over... at least you have tangible evidence that you've done something.  But please, don't over-burden yourselves... heck, if they made real food with a real variety for G-buttons, I might just give it a try, but alas, they don't, so here I am.  So, here goes!

Just cut these babies in half (butternut squash), remove seeds, and roast.  I'm inpatient so I roast everything at 425 degrees.  If you are super woman, you can wash seeds and roast for the other kids, but I am not, so mine found their way into the trash :/.  Scoop out tender flesh once cooked and add water or one of the other foods cooking liquid, blend.

Peel, quarter, and core apples, bake until soft.  Mmmm, my favorite.  Baking gives the food such a deeper flavor, and even though Dominic doesn't taste his food most of the time, he will uses the apples for oral feeding trials.

Admire how cute your baby is, you know the little bogger that you are doing all this work for.

 I use frozen organic broccoli and green beans from Costco... super easy, just steam and blend.  SAVE the cooking liquid, you will need it for your drier foods such as the squash, apples, and pears!

I bake as much together as I can.  Here are the pears quartered and cored and res bell peppers.  They'll all go in the same big pot anyhow!

 I use two big packs of organic spinach from Costco and steam.  I love the dark green water left over... the original "Vitamin Water."

Thanks to my parents, I have a Vitamix, but I used a plain old blender for my first three kids.  Here it is in action with the spinach.

Admire your sweet baby...



And kiss his little toes...

Here is the pears and red bell peppers being blended.  The Vitamix does make easier work of this!

 Pour everything into the biggest pot you have.  I'm a nerd so I love to watch this progress to the top.

                                                                           Stir...

 And voila!  You have REAL food, made for a REAL person in about 3-4 hours.  I use canning jars b/c they are glass so you don't have to worry about chemicals from plastic leaching in and because they are cute :).  His new food this go-around is carrots, which is why they are separate.

And here's to one tired momma and one happy baby boy.  Go ahead, drink a Coke.  Nothing like celebrating real, wholesome, homemade food with a non-food product :/.  Hey, you can only do what you can do!

This batch should last about a month.  The mixture includes spinach, broccoli, green beans, red bell pepper, pears, apples, butternut squash with carrots on the side.  He is old enough to start trying meat, so maybe I'll add some chicken next time!

Genetic Testing

From Dominic's birth his neurologist has thought Dominic had a genetic condition called Smith-Lemli-Opitz syndrome, but his cholesterol levels have always been pretty normal (or averaged out to normal: 2 high, 3 normal, 2 low), which would not happen with this disorder.  This syndrome effects the last step in the body's process of making cholesterol which is vital to normally functioning life.  It's funny how we all hear the word "cholesterol" and automatically think "heart attack!" but in reality it is very important in our bodies... the good kind, not the McDonald's kind.  Without the proper levels of cholesterol, the nerves are not able to maintain their myelin sheath.  Cholesterol also is a precursor to Vitamin D.

Anyway, this doctor has always highly suspected this and despite the metabolic geneticist and geneticist saying he doesn't have this condition because of his mostly normal cholesterol levels, the neurologist ordered a genetic test anyway (I love him).  This is where it's a bit confusing.  The test came back negative, but there were 7 mutations on the gene that carries this syndrome.  The neurologist says that the 7 mutations are very unlikely to occur on the same gene.  Maybe 1 mutation, but not 7, thus he is still convinced Dominic has some form of this condition.  He is ordering a full genome panel, even of the genes not yet mapped in science, to see all mutations in his DNA and try to make a diagnosis.  He warned me that this full panel will most likely show multiple mutations and can lead us on a wild goose chase if we let it (by pursuing every little mutation we find), but if we have a big picture, it may allow us to make a positive diagnosis.

A diagnosis is so important in this case because we can use cholesterol supplementation to try to replace the cholesterol the body is not making.  Do you know that test they do to every newborn shortly after birth where they prick their heel and collect the blood on a piece of paper with 5 dots?  That test is looking for a disorder called PKU, which is a very serious metabolic disorder that if not found early can lead to mental retardation and seizures.  PKU is the first cousin if you will of this disorder.  If this syndrome is caught early, cholesterol supplementation can help lessen the severity of some of the symptoms later in life, such as the autistic and behavioral tendencies, but unfortunately it can not be managed well enough for the child to be "normal."  We have started on a an egg yolk a day regimen anyway, just in case the test is positive.

It is estimated that 1 in 20,000 to 60,000 babies conceived have this disorder, but it is hard to say since most are miscarried or stillborn, and now with the advent of the screening test, are aborted.

So, in a few days we will be admitted to the hospital for a 24 hour EEG to check for seizure activity and then Dominic will have the blood test for the full genome work up.  It's funny, in college my favorite subject was genetics.  I loved it so much I took extra genetics classes to forgo my requirement for a foreign language (yes, I'm a nerd).  I even considered becoming a genetic counselor but decided not to when I found out that some of that counseling included giving the parents the choice of killing their less-than-perfect child.  Is an imperfect life not worth living?  It seems to me that these are the lives that point us to our ultimate destination.  These people make us uncomfortable because they force us to think.  Think about the hard questions: why?  what is the purpose of this life if not to be productive?  what is a life worth?  They pop our little bubble of normalcy and force us to stare death in the eyes.  Or perhaps I should say they force us to stare God in the eyes.

All this I am struggling with.  Please keep us in your prayers.

In Jesus and Mary,
Chasity

Perfect.

He's got a good angel

I must start out by apologizing to you all first... if I had any sense in me I would have written this a week ago, but alas, I didn't.  Last week was an eventful one for us at the Short household.  Tuesday morning I woke up at 5 am with kids in our bed so I decided to bring them back to their bed.  After I did this I went in to check on Dominic.  He was sleeping soundly in the nurses arms when not even 10 seconds later the vent broke.  Go ahead, re-read that last sentence.  The vent broke.  It started making an awful wheezing and squealing sound and a panicked alarm with a "HW malfunction" message flashing.  Quickly I grabbed the ambu bag and had the nurse start bagging him while I changed the circuit (tubes that lead from the vent to Dominic).  I had never seen this alarm before so I had no idea what was going on.  When this didn't work I ran into Mike and my room and grabbed him.  The nurse was still bagging Dominic while we were trying to figure out what went wrong.  I called our home health company's on-call respiratory therapist who said she would go by the office, pick up a vent, and bring it right over.  We turned the alarming vent off and just decided to bag him while we waited.  We have a back up vent but I had never practiced with it so I though bagging him would be just as good as going through the trouble to hook him up to the back up.

During the two hours we were waiting for the new vent to arrive, Mike and I sat in Dominic's room, sipping coffee and having a good little date.  We laughed how funny it was to us that we thought this forced time together could count as a date, but it was nice.  After the new vent arrived and we got it up and going we put Dominic on and all was well.  He had done beautifully during those two hours and even helped me bag him for a while :).

Fast forward a few hours.  Our date was over and the nurse and I brought Dominic to his regularly scheduled pulmonology appointment.  It's funny because before we left Mike asked me several times if I wanted him to go (which he normally doesn't do) but I declined saying there would be too many of us in a cramped little doctor's office.  I thought it was just because we didn't want our date to end, but maybe he had a feeling something was going to go wrong.  After the doctor came in and saw Dominic, as soon as she left the room actually, he went into respiratory distress.  His blood pressure plummeted, his heart rate went up to 220 (normally 130) and his O2 saturation went down.  He was pale, mottled, and sickly looking.  I called a nurse in, we started monitoring him, gave him a breathing treatment and cranked his oxygen up.  The doctor came in and immediately called a med alert, summoning a whole crew of people to his room.  She said she didn't feel comfortable sending us home, so she admitted him to the pediatric ICU.  That first day was bad.  He started having high fever, his heart rate too was high and we couldn't bring it down and he just felt terrible.  This is the happiest baby in the world, and he was just laying there crying.  Poor baby.

We were in the ICU for 5 days and since Mike was sick, he was unable to come up but 2 times for a short visit with a mask on.  He manned the house and with my family took care of the other kids while I stayed up there and slept there.  Dominic started to look better the 2nd and 3rd days and by the 4th day was looking like himself again.  We had to monitor him for one more day and we were cleared to go home.  Now he is back to his normal self again, smiley and spunky (when we can manage to wake him up!).  Man, normal life is so sweet after you go into survival mode from having the family split up for a hospitalization.

starting to feel better, but still a little sad

"Don't worry mom, I've got this!"

The doctor said that maybe he had a little virus (he had been having symptoms for a few days prior to this) that weakened his immune system enough to allow a bacteria to colonize his trach site.  The bagging may have been what threw him over the edge.  He is finishing a course of antibiotics now and hopefully we can get that nasty bacteria away from the trach!

We are well aware and humbled that our Guardian Angel's were watching over us.  There is no reason that I happen to wake up at that time and no reason I should have been in Dominic's room at the exact moment the vent broke.  There is no reason we were already at the hospital in the pulmonologists office when he crashed.  No reason except for the protection of God through His angels.  It is so strange that He choose us.

He loves being sang to

4 Friars and a baby :)

Now you see why he is so spoiled

It's hard to feel sorry for him, huh?

And I didn't get a picture of this, but sure wish I had... Dominic pooped on my sisters leg.  Is that TMI?  Sorry if so, I thought it was hilarious!  You can create a mental picture now...

Be careful what you pray for...

For the past couple of weeks I have been having a hard time with constantly having someone in our house (Dominic's nurses).  I say this carefully because I honestly could not do this without them.  There is just no way to properly take care of the other children and attend to his high needs alone, not to mention doing any sliver of housework I can get done (which honestly ain't much).  This has been a real struggle for me, having someone you are not friends with organically, but rather developing a friendship via forced encounters.  I have a hard time balancing that delicate friendship with my role as boss, making sure everything is done correctly, and delegating tasks in a firm but gentle manner.  It's just exhausting.  I want to be careful not to sound ungrateful though.  Luckily his nurses are wonderful, hard working, and know what to do without me telling them everything, every step of the way.  I am grateful for them, but still, tired.

All that to say God answered my weariness by having our weekday nurse unable to come for three days. We took advantage of this and did not ask for a replacement nurse.   It was refreshing to be alone with just the family and to see again that we can take care of Dominic all by ourselves.  It was good to be able to cuddle him without someone there and just be his mom.  His daily routine of care has become second nature to us so it really didn't seem too bad at all.  Mike was off of work so everything flowed smoothly.  Then Thursday came.

His regular nurse was still sick so I asked for a replacement.  I got the nurse whom I sent home early and asked not to come back a few weekends ago.  Be careful what you pray for... God is always faithful in giving you what you need, not neccessarily what you ask for.  In my case, I have prayed for humility.  So, I buckled up and got ready for "one of those days" and just focused on being positive and grateful.  And actually, it was just fine!  I tried to love her for who she was but was of course a bit on guard since last time her comments about disagreeing with The Church on certain things drove me crazy.  Let me explain... in an appropriate forum, disagreements are fine, even good, as they lead to growth and love for neighbor despite, or because of, your differences.  But not when you are at work, in someone else's home, within ear shot of young, malleable children, who have no business at their age knowing that people hate The Church.  It is clear when you walk into our home by the religious artwork and chapel what we believe.  It's just not appropriate to come into someones home and talk about why you think their religion is wrong... in front of their children.  A little respect and self control goes a long way.

All that to say I think she got the point last time that I was not happy about such things being brought up in front of the children (as Dominic's regular nurse says, I don't hide my emotions well) and this time nothing inappropriate at all was said.  She was even asked to cover the weekend night shifts and this has worked out great.  I came in last night after putting Mary back in her bed after she had gotten up and the nurse was trying to figure out how to run a power point presentation on her new laptop about the vent Dominic is on so she could learn more.  That's what I'm talking about!  What a difference from the nurses I have caught sleeping!

I am like a stubborn mule, being so gently led by God, while I "hee" and "haw" and pull all different directions, He is constant.  He just holds on to the rope, gives me freedom, and patiently waits for me to calm down.  When I do, he is so faithful in trying again to gently lead me to the abundant pasture of His love.  Thankfully, He IS patience and love.  If not I would surely be blindly feasting on the weeds I am so attracted to.  I have come such a short way, but am thankful for His faith in me.  To think, being loved despite your disobedience, to the point of an entire lifetime of The Shepherd searching for you, with the singular goal of bringing you home.  Wow.

In Jesus and Mary,
Chasity

One of my favorites...