My Sweet Birthday Boy

Today is Corben's 2nd birthday.  I cannot believe he is 2.  Time really does fly.  He has turned into the sweetest little boy I ever could have asked for.  I want to dedicate this post to sharing about how amazing his little 17 month old self handled the difficult second half of 2012 we had.

I was gone from home for the majority of 2 months.  3 of those weeks I was in a different state.  I was where I knew I was needed most but I also had a sweet little boy at home being cared for by my parents, Steve's parents, my aunt.  The few times I was home, I was running Hunter to numerous doctors appointments and some of my close friends watched Corben.  He never once complained. He went with the flow, he did whatever the person caring for him  needed to do.  I don't know any 17 month old that would be able to do that.

A lot of people tell me how easy I had it with Corben.  Well you know what?  Corben is easy because he HAD to be.  Yes I was physically gone for 2 months, but when we got home, things with Hunter were VERY difficult.  Up until he turned 6 months, he basically cried all day every day.  I wish I was exaggerating.  While I was physically gone for 2 months, when I got home, Corben wasn't getting a whole lot of attention then either.  And even then, he just went with the flow, didn't complain, and got his mama time in when he could.

I will forever be grateful for the way C is.  He always knows when to do something silly to make me laugh.  He always knows when to be sweet and gentle when my patience was at its limit.  He somehow, in his little toddlerhood, healed my heart when it was totally broken for what Hunter has gone through.

Corben lights up any room he enters.  He is a born performer and entertainer and knows how to command attention (without being a brat!).  He is a non-stop talking and moving tornado.  He is all boy.  He laughs at farts and burps... always saying "'scuse me_____"(inserts name of whoever burped).  He does bouncies on the couch and usually invites Hunter, too "Hunter bouncies mama?"

But underneath the wildness of his 2 year old facade, he is sweet to the core.  He holds the gate to the stairs open for me when I am walking behind him.  He knows who everything in the house belongs to (and for the most part doesn't touch it if it isn't his....you will hear him reminding himself "that's mamas".  He snuggles under the "ban-kets" and gives kisses with a cute "muah". He puts his toys back where found them.  He loves his pals and carries Mickey with him everywhere.  He says "peeease and a thank you" when he wants something. He brings his brother toys.

Corben is a ray of sunshine.  Even though I felt guilty being away from him as much as I was, I am not sure I could have gotten through it all if I didn't have him to come home to when I finally did.  He kept me going, smiling, laughing, and loving.

Corben James is such a special little boy.  He is the best big brother to Hunter.  Hunter looks at him with huge eyes and smiles just so excited to one day soon join in.  I cannot wait for my boys to form their own relationship apart from me.  I know that Corben will always protect his brother.  In a way I feel like he has protected me in this last year.  Protected me from being too frustrated, sad, discouraged, angry about the hand that Hunter was dealt.   He reminded me what life is all about.

Happy birthday, Corben.  You are the light of my life.

These all perfectly capture his personality! Taken by my awesome friend, Kelly Benbow

A Breath of Fresh Air

By Saturday, August 25, Hunter was off of all drugs (other than his drug wean and lasix for fluid retention) so he was technically ready for the acute floor.  I BEGGED the rounding doctors that morning to let him stay in ICU one more day because the day had come that Steve, my mom, and Corben were flying to California to spend the weekend.  I would be gone to pick them up from the airport and would be in and out.  It would have been an awful day to move to the step down floor when I was expected to care for him 24/7.  Thankfully they had space and staff so they agreed.

Hunter was excited to see the "Dow", Daddy, and Corben

Corben rode on an airplane for the first time that morning.  As I write this, I have tears in my eyes that I missed that.  I have been there for every single one of his firsts, but not his first time on an airplane.  He was so excited and was such a good boy. 

 At the airport watching the "panes"

 Seeing my big boy in the first time in almost 2 weeks

 Kenny brought him a special toy

 Enjoying the loading dock view from our ICU room

My whole family in the same room

That weekend was exactly the boost I needed to get through the remaining time I would need to be away.  There is just something about Corben's innocence and pure uninhibited joy that absolutely filled up my soul, refreshed me, and filled up my tank for the rest of the road I had.  

 Enjoying his breakfast at RMH

We took him to the beach in Santa Monica (while my mom stayed at the hospital with Hunter).  He had so much fun at the "beeeash".  I truly enjoyed every moment I had with him that day, but again, there is just something so unnatural about enjoying a day at the beach while your other son, the other half of your life is in a hospital recovering.  But Corben absolutely loved his day and especially his funnel cake! 

 He kept saying "Hi Mickey" but then freaked when I took him up to Mickey Mouse!

 

 Car and stroller naps were all he got that weekend

 The rest of the weekend was mostly just hanging at the hospital.  They have a play area outside of the cafeteria so he enjoyed playing there.  The RMH and play room at the hospital also have of things to play with so he definitely was not bored.  I would go back to the RMH in the evening and bathe Corben and get him dressed for bed while Steve stayed with Hunter.  Then after reading to C and saying goodnight to him and my mom, I would leave and Steve would meet me halfway, then walk me back to the hospital entrance so I could stay the night with Hunter.

Corben has pretty much only ever slept in his crib.  I think a total of 3 night he has slept elsewhere.  So we weren't sure how he would do in a regular bed while sleeping with my mom.  He would try to get down but she made sure he stayed up.  He would hand her the remote and ask for Mickey, to which she would respond no.  But mostly he would roll and toss around, stand on his head, etc before finally falling asleep about an hour past his normal bedtime! Ha! She would send me pictures of him in crazy positions.  That kid is a GOOF!

An unsuccessful attempt at an RMH nap

My favorite story of the weekend is from my mom.  Corben finally fell asleep around 8:30 and was asleep in crazy positions throughout the night.  She got ready for bed and was sound asleep when at around 2am she woke to that feeling that someone was looking at her.  She opened her eyes to see my 18 month old son leaning over her, his face practically touching hers with his little finger in front of his mouth, saying "Shhhhhhhh Shhhhhhhhh Shhhhhhhh"  HAHAHAHAHAHAHA!!!!!! She told him to go back to sleep and he laid down and did!  Oh my...... that story kills me!

Having people that you love with you while going through one of life's most difficult times is amazing.  That weekend I felt whole again.  I could physically hold Corben and touch Hunter at the same time.  My arms ached to feel both of them at the same time.  

I will be writing a post dedicated to Corben and how AMAZING he was during all of this, on Friday, on his birthday, but let me just say that that boy is one of the biggest joys in my life.  His presence that weekend made me feel whole again.  He made me feel like there was hope and a light at the end of this dark tunnel I had been currently living in.  He was my breath of fresh air and I will forever be grateful of the way his sweet and innocent personality healed and rejuvinated me that weekend.  

My Little Junkie

The night after Hunter was extubated they wanted to start trialing him on feeds by mouth.  They like to start with "clears" so the nurse brought in some Pedialyte at around 10pm. I have tried it and the stuff tastes awful.  So when Hunter was not having it, I wasn't worried.  My chunk man was an amazing eater before surgery, even in heart failure, so they weren't worried about him picking right back up where he left off a week prior.

At around 1 am the nurse woke me up (per my request) to try to feed him some breastmilk.  I begged that the next feeding we just went with it.  He hadn't had much pedialyte but he also hadn't aspirated any of it, so the risk of a vocal cord problem was slim.  He just wouldn't eat.  He gagged, cried, wasn't having it. I was so discouraged.  We would try again at 4 am.  The time between the feedings he just wouldn't settle.  He wasn't crying, just wouldn't fall asleep and stay asleep.  (This was the beginning of me not sleeping longer than an hour at a time for every bit of 2 months!) We tried to feed him again at 4 and it was even worse. The nurse decided to just feed him through his NG tube until morning rounds.

Since my baby was awake all night, I was up way earlier than my routine had been so I left to take a shower at RMH earlier than usual and was back after the nurses changed shifts but before rounds.  Wendy, our nurse from Hunter's big day the previous day, told me as soon as I walked in the room that she realized that Hunter was majorly "tweaking" out and having extreme drug withdraw symptoms.  The day before when they cut all of his pain meds and heart meds, the ICU attending told me that he was right at the cusp of possibly withdrawing so they would wait and see (if it can happen, it happens to Hunter.....in hindsight, I would have advocated for a scheduled drug wean before the withdrawing ever happened).  Wendy went right to the meds room and got a morphine bolus for him to mellow him out on until the doctors rounded and gave a drug wean plan for him.  The poor baby finally started chilling out and rested.

 The nurse we had the day Hunter coded came in and made him this little contraption to keep his paci in

 My drug addict

Finally resting

The doctors decided to put Hunter on scheduled Morphine through his IV to combat the withdraw.  They wanted to try to feed him by mouth again and he just soared through all feedings.  Doubling and tripling every goal they had set.  I knew my big eater would be back!   A lot of kiddos after heart surgery end up hung up in the hospital because of feeding issues.  Just like my gut feeling HATED that Hunter would have to go on bypass for his surgery (which was the cause of his seizure, a fluke air bubble that passed from the machine and eventually went to his brain, causing the seizure and cardiac arrest), my gut was telling me that feeding would not be an issue after his surgery.  That first night I was so let down that he didn't just jump right back in.  The kid just needed his drug fix!

That afternoon we had a bit of a scare as the nurse and I were standing over Hunter and she was about to start her assessments and cares of him.  He woke up out of sound sleep SCREAMING.  He was so upset that he went into respiratory arrest and turned the most awful shade of blue/purple I have ever seen.  I started saying, somehow calmly, "Wendy, this isn't going anywhere good".  I watched as his oxygen sats dropped into the 40's and she grabbed the oxygen bag and began bagging him (squeezing it to give him extra puffs of oxygen) and turned his 1 liter of flow oxygen cannula up to 10 liters.  He recovered quickly and I just about crumbled to the floor.  Her first words....."Cardiac kids like to do that".  OMG.  There was no way I could handle that again.  Thankfully he never did it that bad again, but there were times at home I thought he was headed there.  

After that scary moment, there weren't anymore.  Hunter ate like a champ, his very weak and raspy voice and cries slowly were getting stronger. Wendy later told me that if that would have happened on the acute floor, they most likely would have "pressed the button" meaning called another Code Blue on him.  Ay yay yay.......

August 23, 2012

This day, in my mind, is kind of like Hunter's birthday to me,  in fact it is a happier day than his actual birthday.  It was the day that I actually began to believe that I would get to keep him.  During the whole process, I allowed myself to fall in love with my sweet boy, but I wasn't sure if he would get to come home with me.  Would I get to see his first real smile?  Would I get to hear his first laugh?  Would I get to take snuggle naps with him and hold him when he just needed his mama?  I didn't know.  This day, I started to realize that he would get to be mine.

Steve was still in Arizona and the day of Hunter's hopeful extubation was here.  My hospital routine was to wake up, go grab coffee, wait for morning rounds and then leave to go back to RMH to take a shower, do a load of laundry, etc. This morning started exactly same.  I had a cautious optimism that extubating Hunter would go well.

Rounds came and the first thing after the usual intro "This is Hunter Gross, our 6 week old born with undiagnosed critical aortic stenosis, X days post Ross procedure X days post closure..." the fellow says that the MRI results came back negative.  I knew that was a good thing but then the ICU attending, Dr. Nelson, interrupted the fellow, looked right at me with a huge smile and said "That means normal.  Hunter's brain show no injury"  Of course, I started crying. Being on the heart and lung bypass machine, having a seizure, going into cardiac arrest, and having CPR performed on him all individually put him at risk for having brain injury....he had all of that and NO brain injury.  Praise God.  What a miracle!

Then they laid our the plan for the day.  Extubate at around 2, finish coming off of all sedatives and pain meds, and move him to a big boy bed instead of the newborn warmer.  I expressed that it all seemed like a lot and the same doctor who over the weekend told me she didn't trust him, told me that she knew he could do it and she wouldn't do all of this if she at all thought he wouldn't be okay.

It was going to be a big day, so I hurried to take a shower and get back.  All of his meds were basically turned off by the time I got back.  Crazy to see.

2 o'clock rolled around and it was time to hold our breaths that Hunter would take his first big ones on his own.  I sat on my little bed/couch and watched nervously as they pulled the tube that had been breathing for him for a week out of his nose.  They immediately put a nasal cannula in just for a little extra flow of oxygen.  The fellow looked at me and told me to come look at him.  This is what I saw......

This was the face looking at me.  HUGE smiles as soon as that tube was out!  His first big smiles at 6 weeks old.  Everyone in the room was amazed.  He was breathing great on his own, no dips in oxygen saturations, his rate was good.  Hunter man was ready!  

Dr. Starnes came to visit him again that afternoon.  He said "Hunter is on a trail now" and he really was.  According to nurses, he rarely visits patients after surgery.  He operates at CHLA on Mondays and Thursdays, and at USC on the other days.  He actually visited Hunter every Monday and Thursday that we were in the hospital.... even when we were on the step down floor.  We were told by many that Hunter had pulled at the heart strings of the entire unit.  Everyone from nurses, doctors, fellows, respiratory techs, surgical fellows, residents all came to see Hunter and give me hugs that day.  It wasn't just me in that room that got to experience the joy of that day.  I am sure it is days like that that keep these amazing people doing their jobs.  And it was my little guy they were celebrating, when exactly a week before, none of them were sure that he would make it through the night.  

                                            

In his big boy bed.

When the nurses changed shifts at 7, our day nurse, Wendy, told our night nurse that when she came in the morning she wanted me to be able to show her a picture of me holding my baby for the first time.  Maide, our night nurse, made that happen.  I was so incredibly nervous because I didn't want to hurt him, plus he still had his central line in his neck which totally freaked me out.  But she told me he needed it, so of course I got over my nerves.  I sat down and was literally shaking as she placed my 6 week old baby in my arms for the first time in almost 8 days.  Tears immediately started streaming down my face.  I had my boy in my arms.  I felt the weight of him on me.  Like I said, he was mine, and I got to keep him. 

Absolute BLISS

Sorry for the cliffhanger!

I left you with Hunter's life threatening event and then ditch y'all for a week! But I think you all know that he's a big happy, healthy chubba 6 month old.....so it's ok! Moving on to the rest of his ICU stay....

The next day, Friday, after Hunter's surgery and cardiac arrest, things were continuing to look stable.  They hadn't had to increase any of his drugs or medicine (except some of the sedatives when he would try to wake up).  They were leaving everything as it was to let his body adjust to it's new physiology.  It was all just watching and waiting.

Throughout the weekend he continued to look even better.  The ICU attending doctor was pleased with how things looked but she wouldn't commit to saying he was doing "well" because in her words "I frankly don't trust him at all".  Understood...neither did I.

 

During the weekend

Talk about freaky....seeing your baby awake with his chest wide open! 

It was so good to see his eyes, even tho they didn't let him be awake any more than a minute or two.

On Saturday afternoon, everyone agreed that he was ready to start thinking about closing his chest.  Because, like I said, no one trusted him, they wanted to wait until Monday morning when they had the full surgical team there and a full staff "just in case".  So on Sunday, Steve and I actually had a "relaxing" day.  We hung out with one of our favorite nurses, Amy, took a walk to a great little English pub and had yummy fish and chips. When we came back, Amy said to us "I was going to call you, but didn't want to freak you out...." My heart was POUNDING.... Turns out Hunter was now in "isolation" for 24 hours meaning anyone other than us coming into his room had to wear a paper gown and gloves, because it seemed he had impetigo on his ear.  Of course buddy, if anyone can get a honey crusted skin infection in the hospital, it's YOU! They applied ointment for a few days and it cleared up.  So bizarre.

Monday morning came and it was time to close his chest.  There was a bit of chaos that morning figuring out the time.  At first they said the afternoon, then they gave us the option of the morning, which we didn't take because Steve was at the RMH trying to work that morning.  Then the surgical fellow called me while I was downstairs at Starbucks (yes in the hospital..... thank GOD!) and said that because of scheduling they needed to do it right then.  I ran upstairs and barely had enough time to kiss my guy before the team got there.  Steve wasn't able to give him a kiss before, but he did make it to the family lounge right when I did to help me not freak out.

The process of closing the chest is a surgery.  It is done bedside in a sterile environment.  The nurse is there in charge of his sedatives, an ICU fellow is there calling the shots, the respiratory technician is there controlling the ventilator, and the surgical fellow is there doing the closure.Plus because of how well everyone  knew Hunter at that point, lots of extras were there, just in case. The procedure itself of wiring the sternum closed and stitching the skin takes about 20 minutes.  We were back in there with Hunter about 50 minutes after I left.

They expect a dip in status after the closure as the body has to adjust to the new pressure in the chest but Hunter had no dip.  At around 4 that afternoon, his nurse and I were standing over him and we both watched this mysterious rash start from below his chin and move its way down his whole body to his feet.  Of course, I was freaking out.  She called the fellow to come take a look.  He had a lot of "hmmmmmms" and decided to just watch and see.  Awesome.

That night, after an hour or so of Hunter's heart rate being quite a bit more rapid, they found that he had a fever.  They took blood and lung secretion cultures and sent them to the lab.  It takes at least 24 hours to get results back.  Again, I was freaking out and asking a lot of questions.  A fever and possible infection is never a  good thing.  In the end, that ended up being nothing.  Hunter's rash and fever were both just "him" and keeping everyone on their toes.

Tuesday, 1 day post closure, was a quiet day as well.  We continued to slowly wean him off of his heart meds.  He was able to rid of his pacing wires (just in case they needed to pace his heart) and his chest drainage tubes.  He was starting to look more like himself.  They also began "waking up" his tummy by giving very small amounts of breastmilk through the NG tube down his nose.  He continued to do well.

Closed Chest!!!

Wednesday, Steve had to go home to Arizona.  He had a big deposition on Thursday, but would be returning on Saturday morning with Corben and my mom to spend the weekend with me.  Hunter continued to do so well.  They had weaned his ventilator settings down quite a bit and began pressure support sprints where basically he was doing the work on his own.  He would start breathing very fast by the end of the sprints. So he didn't fail, but he also didn't pass with flying colors either.  They also felt he was stable enough to be sent for his MRI and didn't want to push him too hard and extubate him as he would need to be sedated for the MRI anyway.  They didn't want someone freshly off the vent to then be heavily sedated.  So they gave him another day.  The MRI itself went great.  They were gone with him a LONG time.  I was expecting about 2 hours and they had him for over 3.  I was starting to get panicky when they rolled him back in.

His entourage during his trek to MRI.  

 That night I was able to get a goodnight's sleep.  Actually, pretty much every night other than his first night after surgery I slept great.  He was sedated so there were no cares I could have done for him, I couldn't hold him, and he didn't make any noise! I averaged about 7-8 hours a night! Amazing!

The next day, was probably one of the best days of my life........