Christmas Eve, from Phoenix

I know you're all dying to hear how the plane ride went.  And, I'm proud to say that it went totally fine.  Having my children along to deal with and worry about really kept my own anxiety from creeping up.  I just didn't have the time or the energy to worry about worrying.  Don't get me wrong, I still popped two xanex and had 2 glasses of white wine, but that might have been more out of habit than necessity.  We landed without issue, and found our way to our rental car and our rental house.  Mason isn't quite sure what to think of all these things we are borrowing.  He was awake and standing next to our bed at 5:15 on Friday morning.  I think he might have been dressed into clothes, complete with shoes, by 5:20.  Silly boy.  He didn't think we were staying and was worried about being left behind.  It's been a little rough adjusting to the schedules of vacation, but we're doing ok.  Having fun, making good memories, and eating some yummy food.  I am still hoping for a date night with Chris while we are here.  I've yet to eat any mexican food, and damn it, that's just not ok.

Monday night we went to dinner, and the first thing I noticed was the mom at the head of the table, wearing a stethoscope.  My eyes darted around the table until they came to rest on her one year old son, with an NG tube in his nose.  We sat directly next to them, and I could feel my feet dancing, the excitement jumping from one foot to the other.  I could hardly contain myself.  Chris could tell I was dying to go say something to them.  Trouble was, I really couldn't think of a darned thing to start the conversation with.  But then I remembered something that a kind waitress said to me when she asked about Jackson.  She said it's so much nicer when people ask questions then when they just stare.  So, over I walked and introduced myself.  We talked about synergist shots, and NG tubes vs G tubes and how challenging, and yet rewarding, it is to be the mom of a kid with special needs.  It felt good, in the pit of my stomach, to reach out and connect.  I'm so used to the stares and the pointing and the whispering.  It was truly liberating for my soul me to see another mom, out with her child, just trying to have dinner as a family.

Phoenix has been good to us.  The weather is nice.  Jackson's oxygen sats are up a couple of points, and Mason has really enjoyed spending time with Grandma Donna and Aunt Nelly and everyone else.  I am overlooking the pool of our rental house, doors wide open, in the 70 degree weather.  It's a nice change of pace, but, it will be hard to convince myself it's Christmas tomorrow morning when there is no snow.

I am feeling blessed and safe and happy as we slip through Christmas Eve and into Christmas Day.  My children are home and healthy.  My family is together under one roof.  What a joy to be able to spend the holidays here in sunny Phoenix.

Merry Christmas everyone!!

Are we leaving for Africa for a month? Or Phoenix for 10 days? I can't tell!!

Whenever my mother packs for a trip, regardless of length of time she will be gone, she makes a list of what she needs to take.  She spells it out.  5 pairs pants.  5 shirts.  5 under ware.  You get the picture.  And then as she packs the items it into the suitcase, she crosses it off.  5 pairs pants.  5 shirts.  5 under ware.  I've picked this habit up from time to time, as it really does cater to the OCD in me.  Right now, I have lists for my lists.  And darn it, nothing is getting crossed off!  I have things to pack.  I have meds to remember to pick up to pack.  I have notes and itineraries and contact information to remember to print off.  I have to keep Jackson out of the friggen ER long enough to get his ass on a plane!!  And I have to fit in a clinic visit, a blood draw, and his 2nd RSV shot next week.  This is one of those times I am thankful for Chris' unemployment.

Jackson has been fighting a cold since Thanksgiving.

We were in the ER last Saturday, admitted to the 9th floor overnight for observation for low sats.

We were back in the ER Tuesday, for low sats and a high heart rate.  This time I managed to escape with him the same day.

We chalked the heart rate up to the higher doses of diuretic he had gotten in the overnight stay from the weekend.  I really, really don't envy his cardiologist for having to figure out just the right balance of meds to keep Jackson's heart and lungs happy.  I really, really don't.  Right now, he's too dry, so we're back to every other day.  For how long, who knows.

I've printed, I shit you not, 10 blank December calendars to take to Phoenix in an effort to organize myself down there without the benefit of the blood draw lab, or his cardiologist, being more than a 20 minute drive away.  I am fearful Chris will need to take my phone away down there so I am not texting Adel a gazillion times a day out of fear.

Taking two children on a plane ride to Phoenix sounds simple enough.  But then add in 2 car seats, a stroller, a pulse ox, a suction machine, a feeding pump, meds (Jackson and me), shit to keep a 4 year old busy for a 2 hour flight, the 18 tons of paperwork for approval to bring portable oxygen and medication on a plane, the actual oxygen itself, 2 adults (one of which will be a nervous wreck) and 2 children.  Luggage up the wazoo.  Good lord, seriously?!?!?  We may not travel again as a family of four until my kids are 18!!

Sicko

Jackson has a bit of a cold.  We are going on 2 weeks now, with lots of coughing and arfing and gagging.  I had thought he was starting to feel better, but then last Friday his pulse ox seemed stuck in the upper 60's.  I suctioned him, re-positioned him, and even got a new pulse ox reader, and yet, there I was, staring at 60's.  By Saturday afternoon, I had his cardiologist call ahead to the ER that I was coming in.  18+ hours with sats that wouldn't really budge.  And, when they plugged him in in the ER, his sat was 84.  I even took a picture of it and texted it to his cardiologist, with a little WFT note?!?!  Clearly, Jackson was missing the ladies, and felt the need to come for a visit.  He was, of course, admitted for observation overnight.  But, we were able to take him home on Sunday.  Less than 24 hours, with a boy who has spent 60+ days there at a stretch, really is something to celebrate!  We are trying to get his diuretics back on board and wait out the cold.  Which I really suck at.  You'd think by now that I would know better than to assume he'd be better in the standard two week time slot.  Jackson doesn't do anything standard.  And he doesn't do anything when / where / or how I tell him.  Stubborn is the worlds greatest understatement.

We are trying to get ready for Phoenix.  We are flying out early on the 19th to spend about 10 days with my in laws.  Lord help me.  Yes, we all know I am terrified of flying - that's a given.  But then add in flying, with 2 children, one of which is his own personal hospital on wheels, and, well, it's no wonder I've already called in my Zanex prescription.  Shit, I don't even have the time to go find myself a primary care doctor - I had to call my OBGYN to get them!  Talk about sad!!  ;)    I am ready for a change of scenery, that's true.  But, I don't think this counts as a vacation.  A vacation would include blue water that I can see through, sand, fruity girlie drinks with straws, and no children.  And no suction machine, no pulse ox, no g tube feeds.  TSA is going to have a field day when we try to get through security.  Someone should alert the media, sell tickets.  It's going to be a hoot, that I promise.  But, I'll have my Zanex and my single serve bottles of wine to get me through it.  I always carry two $5 bills on flights.  And I hear there's a bar in DIA.  Do you think 5am is too early for Chardonnay??  Nah!!! 

Thanksgiving 2013

My poor neglected little blog.  Oh, how I've missed thee.

It was just easiest to update everyone about Jackson by email.  People could read it, or not.  They could pass it along to others, or not.  And lord knows I was down right honest in my emails.  But, the therapeutic side of it was missing for me.  I write to get things off my chest and out of my head so I can move on with my day.  I was so busy making sure everyone knew how Jackson was doing, that I forgot to check and see how I was doing.  And so today, I'm making a jump back to my blog.  What started as Mason's baby book, the story of my first born, somehow took a left turn and never got back on the road.  Today, I am merging with traffic again.

I was at King Soopers with Jackson the other day, doing some holiday shopping.  Just the two of us.  A woman passed by us, and said "thank you for choosing life".  I looked at her, but didn't respond.  I guess she didn't think I heard her, so she repeated it.  I just looked at her some more.  I mean, what was I supposed to say?  Clearly, I didn't choose it for her.  I didn't choose it because it was the right thing to do.  I didn't choose it because I was pressured to.  I chose life because at the end of the day, I couldn't choose death.  Don't get me wrong.  I am currently, and will always be, pro choice.  No one should get to tell a woman what to do with her body.  I think I was offended by her.  And I think I was caught off guard by her and her beliefs.  But I know I hated her for bringing me back to those days and weeks when we were faced with such unthinkable choices.  Here I was strolling the isles of the grocery store, talking to Jackson about all that we were seeing, not a single care in the world.  And in an instant a total stranger had brought me back to the darkest days of my life.  I down right hated her.

I sat in the front lobby of Children's hospital yesterday for about 30 minutes.  I sipped my iced vanilla latte and just watched people pass by.  A woman pushed a stroller past me with a baby inside, who was maybe 5 months old.  The little girl was sitting up on her own and I winced a little with jealousy.  And then they turned a corner, and I saw the 8+ inch freshly sewn zipper that covered the baby's head.  And in an instant, my jealousy was washed away with shame.  Who was I to assume that this little girls course had been so easy, just because she could sit up in her stroller?  While I was licking my wounds, a dad came by, with his teenage son.  He was in a wheel chair that reclined to put his feet up in the air, so that he was almost parallel with the ground.  His toes pointed and curled.  His mouth frozen open.  And I knew his son didn't walk.  Or talk. Or laugh.  Or eat with his mouth.  Or hug his mom.

Everyone said that the first year was the hardest.  And, here I sat, having gotten through that first year, with only minimal damage to my heart and mind.  I came home, humbled and grateful, and made 8 dozen pumpkin chocolate chip muffins to take to the Cardiac ICU today.  I wanted to take one into each of the rooms, and hug each of those parents, and promise them that the first year was the hardest.  But, I've been around this heart world long enough to know better than to promise them a damn thing.  Some of us are fortunate, and the first year comes and goes, and while battered and torn, we all live to see another day.  But too many times, we loose another sweet angel.  So, I dropped my goodies off and left.  I can't bring myself to utter empty promises. 

Today, I am thankful for many many things.  Above all else, I am thankful that God has granted my son another day, here on earth with us.

Feeling Guilty for Feeling Blessed

Jackson's 2nd open heart surgery took place on Friday.  Dr. Campbell is his surgeon.  He told me how pleased he was and how well everything went.  Dr. Ing was the anesthesiologist.  He told me how well Jackson tolerated the anesthesia.  Dr. Adel is his cardiologist.  He told me how great everything went, reassured me that Jackson was fine.  And yet I still asked him if there was anything bad that no one was telling us.  And then I spent the next 3 days feeling guilty for having asked such a question.  But I realize that we are blessed with Jackson's heart.  Not for his heart defect, but for how well his surgeries have gone.  How well he has done.  How quickly he has recovered.  I look at so many of my heart momma friends and I see their struggles.  Days that turn into weeks that turn into months, spent in the hospital with your little one, when you have other children back home.  Wound vacs and cardiac caths.  Surgeries that don't go as well as planned.  Procedures that actually do damage to the heart in an attempt to fix it.  Little Liam, who paid the ultimate price with his life when his heart gave out.  And we seem to sail through.  I mean, yes, we have our issues from time to time.  But really, compared to some of them, it's nothing.  And I feel guilty for our good luck.  I am struggling to be a good friend to these heart momma's, when I can't really relate to them.  I haven't had these same set backs and tragedies.  Of course, I don't want to have them either.  I am obviously ok with Jackson's steady progress.  But I have such feelings of guilt too.  I hope that I can at least give them a safe place to cry or yell or say really horrible things.  I hope they know that while I don't truly understand, I do care and I do feel for them and I do pray for their little ones.

Friday Friday Friday

My mind is such a mess, I honestly don't even really know what to write or say.

I tried to think of the things I am thankful for.  I am thankful there is a new CICU wing, and that I don't have to go back to the place where I watched a little heart girl die just 3 days after Jackson was born.  Or where they told us Jackson had CHARGE and then wheeled him off for surgery.  But it didn't seem right that those are things I am thankful for.

So I tried to think of the things I am scared of.  I am scared of Jackson dying.  I am scared of his heart not being strong enough to re-start when they take him off the bypass machine.  I am scared of him having a heart attack or stroke from the surgery.  I am scared of his incision getting infected and us being in the hospital longer.  I am scared of seeing him in so much pain.

A good friend (and my boss) suggested that there are two possibilities that exist in the universe.  One possibility is that Jackson's surgery can go horribly wrong.  But, the other possibility is that it can go smoothly and without complication.  And she said that whichever possibility I spend my time and energy focusing on, is the one that will come true.  So, I guess it's time to pull up my big girl panties and stop worrying about the awful things that could happen.  And instead, imagine the good things.

Imagine that the anesthesiologist will keep Jackson safely intubated without too much medicine.
Imagine that Jackson's heart will be strong and will beat on its own when the time comes.
Imagine that we will be able to keep his pain under control and managed without the use of opiates.  Imagine that his chest will heal and his scar is something he will someday show off with pride.  Imagine that once his body starts to send more blood to the rest of his parts, his eating will improve.  Imagine that he will pass his swallow study and begin to eat by mouth.
Imagine Jackson safely back in our arms after surgery.
Imagine the good.
Imagine the positive.
Imagine success.
Imagine Jackson growing up and going to college and getting married and having kids of his own.

I think it's pretty obvious these are better things to focus on.  Better outcomes.  Better situations.  I am working on it, working on switching my thoughts from glass half empty over to glass half full.

And, I am so very thankful for our friends and our family who have rallied around us, again.  The meals you bring are so helpful.  The phone calls and text messages and emails with words of encouragement are amazing and keep us strong.  The chances to just sit and talk and cry are so healing.  The love and sacrifice of my parents is generous beyond words.  I am sometimes overwhelmed with the out puring of support.  My cup truly runeth over.

Losing my Shit

I find myself calling my mother, a lot lately.  She's been working, and isn't answering.  And of course, I am not leaving any messages either.  I mean, really, what would I say?  My mind is in a fog, both at work and at home.  I have very little patience or compassion these days, except for my children.  Even my poor husband is feeling left out and let down.  I have been having a drink every single day.  Just one, but, daily.  And, sadly, I am at the highest dose of meds I can be on.  I don't sleep.  I constantly worry.  And I am pretty gosh darned useless right now.  I get home from a long day at work, and all I want to do is cuddle with my boys.  Mason will only stand that for a few minutes before he has to run off and do something.  But Jackson and I, we can just hang out and stare into each others eyes for hours and hours.

I would like to take Mason to church with me this Easter weekend.  But I am worried about the added germs right before surgery.  And of course, I feel like a jerk of a mom for denying him an easter egg hunt, complete with chocolate.  Why does he have to suffer and do without, just because of Jackson's heart.  It's not fair that he is punished too.  And yet, he is the sweetest kindest gentlest big brother ever.  He kisses Jackson every day, shows him any new owies that he receives, and always reminds us to take good care of his brother.  Last night I asked him if it was ok if Jackson read books with us, and he practically beamed with pride when he said yes.  His love for Jackson is over flowing.  I feel like Jackson will teach us all a thing or two, but the biggest thing I see him teaching Mason is kindness and compassion.

We check in Monday at 10 for the MRI and CT Scan.  I should be thankful that we are (hopefully) skipping the heart cath.  Instead, I am worried and scared about the sedation.  Jackson doesn't really do well on a breathing machine.  And he will be under for a few hours while they get all the pictures they need.  We will pack a bag, and take 2 cars, and hope that being prepared to stay overnight means that we don't have to.  So long as he tolerates the anesthesia ok, then we should be able to go.  I know he has a crush on a few of the 9th floor nurses, so we'll see who wins this time.

I am doing my best to fill the next two weeks with family time and fun.  I have been taking a ton of pictures of Jackson lately.  When he had his first surgery, and was intubated for so long, I began to forget what he looked like when he wasn't so puffy from all the meds and fluids.  I don't want to forget this time, and so I am taking hundreds of pictures to get me through the days ahead.  I stare at him and think to myself "what if this is it?"  I am trying to cram every last thing in, just in case.  A trip to the zoo to see the animals.  A walk around the park.  A picnic out in the backyard with Mason.  I am afraid to take any family photos for fear he won't make it.  But then I worry I will kick myself if he dies and I didn't take one last picture of us all.

I just need to get over the other side of this surgery.  I dread the 12th coming, but I need it to.  I need to be passed this point and on the path to living.  We fight so hard for Jackson, and yet we hardly get to experience life with him.  I want to take him out and show him the world.  And really, show the world our amazing son.

Please send a prayer that Monday is uneventful and that there are no surprises with the MRI.  Neither for his heart, nor the other pictures they will take.  I think the anticipation of the unknown is what is really driving me over the edge.  A positive report card on Monday will go a long ways in helping me feel a little sense of calm.

Jackson's REALLY Long Birth Story - from the begenning

My desire for a second child had been burning bright well before Mason turned 2.  I felt like our family wasn’t quite complete.  I was sure there was a soul out there that belonged with us.  I feared Mason being an only child, and not having a sibling to lean on when Chris and I were gone.  So I bugged and I begged and finally in October of 2012, Chris agreed.

We got pregnant in January.  I was set to take a pregnancy test on February 4^th, which is my best friend’s birthday.  But I was sure I wasn’t pregnant and so I waited until the 5^th.  I didn’t want a bad memory on her special day.  But, sure enough, there were two lines.  Those two pink lines, staring back at me, knowing our world would forever be changed, but not yet knowing the full extent.  It was a Sunday morning.  We called our parents and then I went to church with Mason.  I could hardly contain my excitement as I told our pastor about it.

My pregnancy was pretty uneventful.  I have heard more than once that I do pregnant well, with no real complications.  We had skipped all of the testing with Mason, but this time, decided to have it done.  Our results came back with a slightly higher risk for Downs Syndrome.  My OB was sure it was nothing to worry about.  We pushed it to the back of our minds and carried on.  In early June, we found out that the baby was a boy, and we decided to name him Jackson.

After a routine ultra sound, my OB came to me and said that there were some issues with his heart, and she wanted us to see a perinatologist.  She said they could check everything out.  Some of our Downs risks were a little higher based on some of the things the ultra sound tech saw.  And she couldn’t quite see all four chambers of the heart.  And she thought his stomach was empty, which might mean he had swallowing issues.  So I called and set an appointment for June 13^th.

That morning as I drove to the appointment, I called my mom.  I was scared and trying not to worry.  She said to me that things would be fine, and to call with the good news later that afternoon.  Chris met me there and we went inside.  The doctor came out to meet us and lead us into an ultrasound room.  I laid on the table and we talked.  He said he would start with the fun stuff first.  He confirmed we were having a boy.  He scanned and we talked and joked.  And then he got very quiet.  Eerily quiet.  And focused.  And serious.  I started to cry.  I knew something was wrong.  I held Chris’ hand and wiped away tears.  He turned to us and said “I think you can tell from my silence that something is wrong.  Your baby has a heart condition, called Double Outlet Right Ventricle.  Basically part of his heart didn’t develop”.  There were many more words said after that.  I don’t remember most of them.  He was so kind, he even said we would not hear most of what he was telling us, and so he wrote his cell phone number on the back of a card and told us to call anytime.

He stepped out of the room and made a call to Children’s Hospital and got us a same day appointment with the cardiologist.  Chris and I had driven separate.  Chris had come in his work truck and so he had to go back to the shop and drop it off.  He was going to meet me there.  I called my dad as I drove, and I cried.  I was so scared.  I didn’t know what any of this meant.  But my worst fears were playing out in my mind as I drove.  Walking into the front doors of Children’s, I looked around and saw kids everywhere.   Some were in wheelchairs.  Some in walkers.  Some in cute little red wagons.  Some walking.  Some sleeping in their mother’s arms.  But, what I noticed most, was they were all smiling.  Even the really sick ones.

I headed up to the 3^rd floor and waited for Chris.  I tried not to cry.  Finally a sweet nurse named Keri came out and introduced herself and we walked back to another ultrasound room.  They scanned and talked and scanned some more.  Jackson wasn’t in a very good position and so they sent me down to the cafeteria.  Told me to get some food, walk around a little, and come back.  I called my mom and cried.  We came back up and they scanned some more, and then they sent us to a family counseling room.  It was not the last time we’d sit in that room.  The doctor came in and she drew pictures and she talked in words we didn’t understand.  We sat there, listening, but not really hearing.  Not processing.  She told us that we had three choices.  Once he was born, we could send him for a set of 3 open heart surgeries, we could terminate the pregnancy, or we could do comfort care and let him pass once he was born.  The only option we immediately turned down was comfort care.  We both said that either we were doing this, or we weren’t.  But watching him die was not an option.  We left with our drawings, still completely numb.  We drove home separate from each other.  I called my mom and cried some more.  When I picked up Mason from daycare, I hugged him and did my best not to cry.  Seeing him, and worrying about what his future would look like, was overwhelming.

Over the next forty eight hours, Chris and I cried.  We talked.  We mourned  We sat in silence together.  We were angry together.  We did our best to parent Mason and to go to work.  Our minds a million miles away from either task.  I flip flopped a hundred times a minute on my choice.  I could justify either option in my mind.  I checked out of my pregnancy.  I stopped noticing when he moved and kicked.  I stopped touching my belly.  I couldn’t handle acknowledging him when I wasn’t sure we’d ever get to meet him.  I begged Chris to end it immediately.  I couldn’t go on for days with him inside of me if we weren’t going to move forward.  I researched abortions and clinics in Denver that would do one this late into my pregnancy.

On June 15^th, we made the decision to get an amnio done.  The same perinatologist met us at the office and performed the test.  He was kind, and tried his best to make the mood light.  He said he would send out a “fish” which would test for the 4 biggest risk factor issues we could have that would cause a heart defect.  He was honest and told us that if any of the 4 came back, he would encourage us to terminate.

June 16^th was a Saturday, and he was on vacation, but he called us anyways.  He said that our “fish” had come back clean.  Chris and I were deflated, we were looking for an easy out.  We didn’t get the free pass we had wanted.  And now we were faced with making a choice.  An awful choice.

June 17^th was Father’s Day.  I started the day determined not to talk about this.  The giant elephant sitting in the middle of our lives.  But we found ourselves talking and crying.  We both agreed that we would terminate the pregnancy.  We just couldn’t do this.  And then we called our parents.  Chris called his mom and I stepped outside and called mine.  My mother is strong and brave.  She’s also a nurse, and so she could make sense of all of this.  She had talked to the perinatologist and the cardiologist and she made it all sound ok.  It was do-able.  We could have him and he could have the surgeries and he could be ok.  They would come and be here and help with Mason.  I confessed to her that I didn’t think I could make myself walk into a room, and kill my own child.  And I that instant, I knew what my choice was.  God had given us this baby.  And if he was going to die, it was going to be God’s choice.  Not mine.  Through all of my flip flopping and mind changing, Chris had made his decision as well.  He wanted to move forward and give this little guy a chance.

We started making plans to move forward with the pregnancy.  The rest of our amnio came back clean and we breathed a sigh of relief.  We went back to Children’s for more echo’s and ultrasounds.  We met Dr. Adel.  He was kind and caring.  He explained things in a way that made sense.  He knew that our first meeting had been horrible, and that we’d left it not really grasping any of what was said.  So he started over.  He spent hours with us that day.  I instantly trusted him.  He held me while I cried and told me that it was going to be ok.  That we could do this together.  He was the first person to tell me that this wasn’t my fault, and that it was ok to mourn the loss of the healthy child we thought we were having.

The remainder of my pregnancy was spent with multiple OB appointments, perinatology appointments, and echo’s at Children’s.   I got really good at reading the faces of the technicians as they scanned his heart.  With each appointment, I had the hope that they would discover his heart was whole.  That they had made a mistake.  Jackson wasn’t growing as well as they wanted.  He only had 2 blood vessels in his umbilical cord, and so I was constantly told to eat more and exercise less.  Anything to get him to grow.  He needed to be big and strong for what he was going to endure.

It was decided that I would have a repeat c-section.  We would have a room full of doctors and nurses ready to step in at a moment’s notice.  It wasn’t the birth experience I wanted.  But it was what was best for Jackson.  We set the date of October 11, 2012.

Chris and I got up early the morning of the 11^th and headed to the hospital.  My parents and brother would come later and meet us there.  We checked in and did our best to joke and laugh.  As long as Jackson was inside me, his little heart wasn’t in danger.  He was safe and secure.  When they finally came to get me, I started to cry.  Walking myself into that operating room is one of the hardest things I’ve ever done.  I felt like I was putting Jackson in danger, and it hurt so bad.  It wasn’t the first time I felt like a bad mom.  My OB had traveled to Children’s to deliver Jackson.  The perinatologist was there to assist.  He had told me earlier in the morning that today was his birthday, and that was sure to be a good sign.  Jackson was delivered at 9:45 am and swept away before I could even hear him cry.  Chris went back and forth, from Jackson’s side to mine, telling me what he looked like and what they were doing.  I begged to know every detail.  Dr. Adel came and sat by my head and asked me if I was ready to have a baby.  I told him I was pretty sure I already had!  To which he replied “crap, I’m late” and he dashed off.  I needed that giggle to lighten the mood.  They finally let Chris bring Jackson to me and I was able to see and kiss my son.  He was small, but beautiful.  I instantly loved him.

When I came back to my room to recover, they brought Jackson in.  I was able to hold him and snuggle with him.  We passed him around the room a little and then I held him and tried to memorize every detail about him.  Those two hours passed in an instant and they came and whisked him away to the CICU down on the 3^rd floor.  My parents went down there and said that he was comfortable and stable.  I finally got down to see him later that afternoon.  It was a long ride in my wheel chair, but holding him was worth the pain of getting out of bed.  We had all noticed that his ears were shaped a little funny, but everyone said he was just squished inside of me.  We all noticed that his left eye didn’t seem to open as much as the right.  They told us he was just tired.

We spent the weekend in the CICU, holding him and getting to know him and waiting for the bomb to drop that they were taking him for surgery.  I missed Mason terribly.  I’d never spent this much time away from him and my heart longed to hold him and kiss him.  He visited some and even got down to see his brother for the first time.  His smile was one of pride.  I will never forget that look.  He looked down at Jackson as if to say “you are my little brother, my forever best friend, and I will always look out for you”.  He is the sweetest most affectionate child.  Having a little bother who is sick will make him even more empathetic and patient.

Chris had gone home the night of the 12^th to be with Mason.  I was in the CICU with Jackson when a little girl coded.  Doctors and nurses rushed to her room.  Her parents cried openly and loudly.  I knew she was sick, I’d been watching all weekend.  But then she died, right there.  This little 3 year old girl who was less than 100 feet from me.  Jackson’s nurse and I both weren’t sure what to do with ourselves.  Did we stand there?  Did we watch?  Should she help?  I told her I needed to leave.  And then I turned right back around and stood over Jackson, as if protecting him.  I cried for that little girl and her parents.  I asked God to be gentle.  They finally got her stable and I left Jackson’s bedside.  That little girl passed away in the middle of the night.  Her room was empty the next morning and I said a prayer for her family.

Jackson’s hearing test was October 13^th.  She started with his right ear.  I asked how it was looking, and she told me it was fine, he passed, and I should go get some lunch.  I came back half an hour later and she told me that he had mild to moderate hearing loss in the right ear.  And that he had profound loss in the left ear.  My world started to unravel.  Chris was at work.  How was I going to tell him that his child was deaf?

The morning of October 15^th, we were all in the CICU.  I held Jackson skin to skin and soaked in every inch of him.  The surgery date had come.  The speech and occupational therapists came.  They were worried about Jackson aspirating on bottles and encouraged us not to feed him by mouth.  Then a geneticist came by.  He looked at Jackson and asked us a few questions.  He stepped aside when the ophthalmologist came.  She dilated his eyes.  She told us that he had a colaboma in his left eye and that his right eye was smaller than the left.  She said she couldn’t say for sure if he had any vision at all and might be blind.  The fabric of my world started to fray some more.  Then came the ENT, who told us that Jackson had coanal atresia and that his nasal passage was blocked.  He was put on oxygen to help him breath.  The fabric ripped and tore.  And finally the geneticist came and told us that Jackson had CHARGE.  He said it was a genetic birth defect that affected many areas.   He would have significant vision and hearing issues.  His airway would be small and compromised.  He would be small and skinny and struggle to gain weight.  His genitals would be adversely affected.  He might not go through puberty without medication.  He would be immune deficient.  The fabric became single strands of thread.  Chris and I held one another and sobbed.  I was angry.  We had done an amnio and they had told us that everything was fine.  That it was just his heart.  Finally the CICU doctor got wind of what was going on, and chased them all away.  She was genuinely sorry and empathetic that they had done this on the day of surgery.  I thanked her for saving us.  I don’t think we could have taken one more person lining up to deliver bad news.

And then they came to take Jackson to surgery.  He was to have a band placed around his pulmonary artery to slow the flow of blood to his lungs down.  Otherwise, he would drown in his own blood and die.  There wasn’t a single sliver of hope left in us when they wheeled him away.  We were beaten and battered and devastated.  I could find nothing positive left in the world.  So we sat and we waited.

Esther came out and pulled Chris and I aside.  I took Chris’ hand in mine, sure that she was going to tell us that he had died.  The walk to that room seemed like an eternity.   She said that Jackson was stable, but, that when they inserted the breathing tube, his belly had filled with air and they didn’t know why.  They were going to bring in an ENT and scope him and see if they could figure out what was wrong.  We walked back outside and told my parents.  And we waited some more.  Esther came out and again pulled Chris and I aside.  Again I took his hand and we walked.  She said that they could find no medical explanation for the air, and that he was too unstable in that condition to operate and they were cancelling it.

I don’t think it even registered  in my brain that we would have to hand him over again.  It took about an hour before we were allowed back to see him.  Nothing prepares you for seeing your child with a breathing tube down their throat, asleep.  I took a deep breath and rounded the corner.  The guilt was over whelming.  I longed to hold him and comfort him, but I wasn’t allowed to move him.  All I could do was touch his arms and legs.  He was so warm from the heater above him.  His face was puffy and swollen.  He had a yellow piece of paper taped above his head that read “critical airway”.  They had graded him a 3.  Only thing worse was a grade 4.

The cardiologists and surgeons and anesthesiologists all came and told us that they had no idea what had happened.  They had no medical explanation for the air in his belly.  They were sorry and baffled.  I knew that God  had seen us and knew we couldn’t do it.  Glad stepped in and gave us a much needed do over.

The next morning I came into the CICU to find his surgeon at his bedside.  And they told me they were going to do surgery that day.  He had had some cancellations, and Jackson had been stable all night.  The decision was made.  I frantically started calling to get Chris back to the hospital.  For the longest time, it was just me and my dad.  The mood was light, and I even found myself joking a little with the social worker.  Chris arrived and we said goodbye to Jackson, again, and they took him back.  We found ourselves again sitting and waiting for updates.  Esther rounded the corner, and immediately held two thumbs up.  I was beyond relieved.  She said there had been no air in the belly this time, and they were proceeding with the surgery.  Jackson sailed through it with no complications and the surgeon was quite pleased with the bands.  We were able to see him a while later.  Now added to that breathing tube down my child’s throat, was a band aid that was the length of his chest, covering the place where they had operated on his tiny heart.  I couldn’t bring myself to touch it.  I spent that night at the hospital, to be close, just in case.  I was in the CICU with Jackson when Dr. Adel came by.  I was starting to regret my decision to spend the night there by myself.  We talked and I cried and he listened.  He is such a gentle and caring man.  He assured me that just because Jackson was special, that didn’t change anything as far as he was concerned.  It just made him more special.

It took a few days to wean Jackson from the breathing tube.  He was finally at a point where he was breathing around it, and needed to be extubated.  Looking at your child, awake, and crying, but with no sound coming out of their mouth, is not something I was prepared for.  I mean, I’d heard about it, and I knew it would happen.  But in the moment when it did, I wasn’t ready.  My dad sent me off to the waiting room and he bravely stayed with Jackson.  I came back to find him awake, and on oxygen.  He ultimately ended up needing more support than that, and was placed on a CPAP machine for a day or two, and then back to oxygen .

Jackson was born on the 4^th floor of Children’s hospital in an operating room on October 11^th.  He spent the next 11 days in the CICU before being moved to the 9^th floor.  After a few days on the 9^th floor, he was taken down for surgery to place a feeding tube into his stomach, called a G Tube, so that we could take out the NG Tube that was in his nose.  He slowly recovered from that, and we finally were allowed to go home on November 5, 2012.  26 days after he was born.

Being a Heart Momma

February 7 - 14 is Congenital Heart Defect week.  This is for anyone born with a heart condition.  A birth defect if you will.  It wasn't something they did, or something their mother did while pregnant.  It just is.  I call it the shitty luck of the draw.

We are approaching the start of this week and I find myself overwhelmed with emotions.  Some days I am sad.  Some days I am happy.  Some days I am carefree and footloose and I let myself daydream about Jackson's graduation from college and his wedding and my grandchildren.  Some days it is all I can do to let him go every morning when I leave to go to work.  On those days I long to crawl into bed with him and snuggle and breath in the smell of him.  I worry that I will forget how sweet he smells.  When he was admitted back in to the hospital in December, we were there less than a day, and he already smelled of hospital.  I had scrubbed him clean of that stench and it was all over my baby again.  I hate that smell.

I am part of heart momma group.  We come there to share our successes, grieve our losses, and spill our deepest secrets.  Things we don't tell our friends or our spouses or our parents.  Things no one else in the world would understand, unless they too were a heart momma.  We say awful things and we cry and we pray.  We beg for just one more day.  We support one another.  And over the time that I have been a part of this group, I have had to witness the passing of no less than 10 babies.  Some with warning.  Some without.  Some clear across the ocean, in other countries.  Each one rocks my very world and shakes my confidence.   If these babies can go, then so can mine.  Jackson is here today, and for that I am thankful.  But I can't help but look at him and wonder how long we'll have.

He has two very scary heart procedures coming up.  The first is a heart cath, where they will insert a wire into his body and map out the veins and arteries of his heart.  He does this under sedation.  When you think about how small those parts are, it's easy to understand how sometimes the worst thing happens, and the wire pokes through an artery.  Irreparable damage is done.  And these children die rather quickly.  I tell myself "at least he'd be asleep".

The second is open heart surgery.  They will put him under, and then they will stop my child's heart from beating.  They will place him on a bypass machine.  And then they will cut his tiny chest open, again and they will operate on his tiny heart, again.  And when we hand him over to surgeons, my own heart is going to break into a million pieces.

I pray for the surgeons to have steady hands.  I pray that god watches over them and guides them.  I pray that there will be no complications.  No infections.  I pray that someday my child will understand why we did these awful things to him.  That is was to keep him here longer, with us. 

A good friend, who is also a heart momma, told me that god gives us these special warriors because we can do this work.  We can take on this job.  I never wanted to be a heart momma.  I don't think any of us did.  But, I am so thankful to have a space where I can go and I can unload some of these thoughts and feelings and fears, and I can be surrounded by people who understand.  Because they have all been there, and thought those same thoughts.

I will be wearing red every day, the 7 - 14, to show my support.  Support for those warriors who are still with us.  Support for those angles who have earned their wings and are flying high above us.  Support for the parents and siblings of congenital heart defects.  Support for hope and promises.  Support for life and for living it one blessed day at a time.  I hope that you will join me, and wear red.