Six Months

Six months.  Six months ago this morning we sent our precious, precocious little boy off for his fourth open heart surgery.  We had no idea how long the operation would take, mainly because the surgeon told us Eli's situation just doesn't happen very often and he didn't know for sure how much he would need to do once he "got in there".  So we waited.  And waited.  And waited.  January 21, 2014 was a long day.  Eli was in the OR for over 8 hours.  He was on bypass for almost five hours.  During bypass, the body is chilled (I've never asked how low...some details are better left unknown) and the heart is stopped.  A machine is used to pump the blood so the heart isn't moving as the surgeon operates.  As efficient as the method is, there is no substitute for the real deal and there's a risk of major organs not getting enough oxygen when the body is on bypass.  But what alternative did we have?

After an exhausting day we were told to meet Dr. Abraham in the Family Lounge of the PICU.  That was normal.  When he came in he smiled to see the large group of us who had waited all day (myself, Bryan, Zachary, my mom, my sister, Bryan's mom, dad, sister, and aunt).  And of course we were all wearing our Eli's MVPs tshirts and sweatshirts in various colors.  He told us the operation went well and Eli was being settled in his room in the PICU.  Dr. Abraham was pleased with how Eli was doing and gave us a rundown of the operation.  It had taken him a long time to get through Eli's scar tissue to even start the actual revision of his Fontan.  Everything took longer, but overall Dr. Abraham was optimistic.  He is a man of few words, but he doesn't mislead in any way.  If he was pleased, we knew we could feel the same.  

After another hour or so we were allowed to see Eli.  After his Fontan (the third heart surgery) we thought Eli looked great.  After this revision we thought he looked even better than the last time.  Eli was extubated without problems a few hours later (I had walked downstairs to Subway and when I came back Eli was extubated!).  We were so relieved to see his good color, his good vital signs, and have him breathing on his own.  But that relief was short-lived.  He started having a lot of twitching.  At first we attributed it to the anesthesia (that has happened to him before).  But as the night went on, the twitching increased even with the administration of some medication.  Eventually we knew he was having seizures.  He was also not waking up which is something he had started at this point with his other three surgeries.

I won't repeat everything that happened over the next couple days, but Eli had a lot of exams and testing done.  Finally, they were able to confirm what we and everyone else thought was happening:  Eli had suffered strokes.  One stroke on the left side of his brain and several on the right side of his brain.  The doctors had no guesses what Eli's prognosis would be.  Over the next few days, Eli made a few advances.  He slowly started waking up more.  I had spent many hours in his room praying he would just open his eyes.  His eyes moved around the room but we weren't sure if he could focus on anything.  He fussed and cried.  He was inconsolable at times and we had to guess what his needs were.  Those things, plus all the other frustrating things he was experiencing, were torture, but the worst was just not knowing.  Was this the best he would ever be?  Was he going to improve from this point?  Don't get me wrong, we were so grateful that our little guy was alive (and actually thriving from a cardiac standpoint) but what kind of life would it be?  Would he be bedridden?  Would he walk?  Would he speak again?  Could he see?  Would we ever be able to care for him at home?  An even bigger fear for us, was he the Eli we knew before surgery?  Would that little boy ever be able to show his personality to us or was he gone forever?  It was scary, frustrating, and a blur.

We received lots of support through those times.  Staff from all over the hospital would stop by to see Eli and check on us.  Nurses from the general peds floor came for many visits and gave lots of hugs.  It was hard for them to see Eli like that when they had just spent several weeks with him making him laugh and letting him boss them around.  Often I would catch them wiping away tears as they left.  The Child Life Specialists were always looking for ways to offer help.  One respiratory therapist found out Bryan and I liked purple Gatorade.  The next morning we found a bag with six of them for us.  And of course the messages, emails, and texts from our family and friends was huge.  We weren't able to personally answer a lot of them, but we read them all and cherish the gestures.

The days passed.  Remember those hours I spent praying he'd open his eyes?  Fast forward six months and now I have many times when I feel like a hypocrite for begging him to slow down and go to sleep for a few hours!!!  It's a wonderful feeling!  Not only did Eli open his eyes, he also spoke, he smiled, he laughed, he sat up, he held his head up, he swallowed, he ate, he drank, he walked, he ran, he raised his arms above his head, and many other things.  None of those things have been easy.  We've all worked hard to help get him this far.  He still has a lot of work to do, mostly with that left hand and arm.  But he has come so far. 

None of the doctors were ever pessimistic with us, they were just very honest and said there was a lot of potential damage.  At the same time, they were optimistic with us.  They would often offer stories of encouragement about advances they had seen with other patients.  I don't remember any of their stories having as much recovery as what Eli's had, so I don't know if he's more amazing than their other patients or if they just didn't want to set our bar too high in case Eli's recovery wasn't this good.  Either way, we're grateful for their guidance. 

A large part of Eli's recovery is because he was started in therapies so early after his strokes.  I think he was evaluated and started with physical, occupational, and speech therapies within a week of his heart surgery.  I vividly remember one day when PT and OT were working with him together.  It couldn't have been more than 10 days after his surgery.  Lynn and Erin got Eli to the edge of the bed and then to the floor.  The two of them stood him up and held him there for a few seconds.  It was difficult.  He had no head or neck control, he had no movement on his left side, very little on the right, and he couldn't be held under the arms because he was just a few days out from open heart surgery.  He was very verbal with his dislike for it, but they needed to see what, if any, strength and tolerance he had in his legs.  There wasn't much.  As I watched those two women (who were two of the most instrumental in his recovery) hold him up, I felt faint and was nearly sick to my stomach.  It was a combination of pride for what he'd already overcome, hearing his weak cries without words as we forced him to do something he had no interest in doing, and the realization of how much he couldn't do for himself all hitting me at once.  But I had to get over it quickly and help them get Eli back in the bed.  Because he couldn't be lifted under the arms, it took three of us to get this 35lb+ kiddo back into bed.

Another memory I have was a personal attitude adjustment for me and it came straight from Eli himself.  I work really hard to find the positives in most situations and we've been put in some pretty desperate situations.  However, by this point it was getting tough to stay positive.  It was two or three weeks after Eli's surgery and strokes.  Because of the flu outbreak, the hospital had some very strict visiting guidelines which meant Zachary couldn't visit.  I hadn't seen him for so long and he needed a mommy visit as much as I needed him.  Bryan was with Eli and I was saying my goodbyes.  As I was kissing Eli's cheeks, I was being silly and he smiled.  He SMILED!  It was his first smile since all that had happened and it was incredibly precious.  As I was driving from Indy, I kept thinking about that smile and how it was just as special as his very first smile.  That's when it dawned on me.  Parents are always excited about their child's first smile, first laugh, first steps, and first anything really.  We had all those "first" experiences with Eli and now we were getting to experience them again.  That was the attitude I had to have to encourage Eli through all the pain and frustration he would encounter over the next few months.

Eli spent the next six weeks at Peyton Manning Children's Hospital.  Monday through Friday he had therapy for close to six hours a day.  On the weekend he had about two to three hours each day with therapists plus whatever we could do with him outside of therapy times.  Despite the visiting restrictions because of the flu, he had many visitors from within the hospital.  Even after he was released from his surgeon, Dr. Abraham stopped by about once a week to see how Eli was doing.  Infectious Disease Nurse Practitioner Angie was there almost daily even if the doctor was rounding on Eli that day.  PICU nurses came to see him.  The cafeteria delivery staff (usually women) would go out of their way to come past Eli's room or the therapy gym to see what advances he was making.  Student nurses who had Eli in previous weeks would come see him when they had a free moment from their current patients.  Eli became a fixture in the hallways.  If he wasn't in the therapy gym he wanted to be out and about.  I walked miles and miles around the nurses station, sometimes carrying him, sometimes pushing him in his wheelchair, and eventually he would occasionally walk around the hallways holding tightly to my hand with his right hand.  And because we were there so long, we were able to make some lasting friendships with other patients and their families.  Our two favorites this time around are Maddy and baby Katie.  Both had tough battles.  Maddy has completed chemo and will be starting college in the fall.  This super woman took (and aced!) several college courses while undergoing strong chemotherapy and melting Eli's heart.  Baby Katie fought bravely for a long time and has earned her angel wings.  That's a story I want to share another time because it is one of the most beautiful stories I've ever heard.  Meeting these families and sharing our journeys really helped us. 

Eli was then transferred to Evansville.  I knew St. Mary's was a good hospital, but I was really worried about making the transition.  Mostly for Eli's sake, but selfishly a little for myself.  Immediately we were made to feel at home.  Eli spent just over two more weeks there where he continued to flourish at a rapid pace.  The therapists, nurses, doctors, techs, and other staff were in love with him as well.  I think we'll always consider PMCH our "home" hospital because they have literally seen us through every up and down, but St. Mary's definitely earned their way into our hearts. 

On March 21, exactly three months after Eli's surgery and strokes, we came home.  We were sooo excited and sooo scared!  Eli had major improvements but he still required a lot of care.  He basically needed an adult within arm's reach at all times for the next several weeks.  We continued working with him on our own and he started therapy through our local hospital.  They came to the house and Eli warmed up to them pretty well.  They therapists we had definitely helped make the transition from hospital to home easier for us.  Because of policy change within the hospital we had to switch therapy providers.  Now we use an agency from out of town.  Again I was worried about changing therapists on Eli, but he has adapted well and tries to ignore them as much as he's tried to ignore all the other therapists he's had!

Eli has worked hard.  It's been a struggle for all of us.  We have a lot more to do but we are incredibly proud of where he is now.  The work he has left is a lot of small, detail things that aren't as celebratory as his second first smile or set of first steps, but they are just as important if not more so.  He has to work at straightening out his index finger and thumb on the left hand.  He has to work at grasping things with the left hand.  He has to work on muscle control in the left hand and arm. Countless more hours will be spent doing those things.  Will he get full control back?  We don't know.  He may not.  Early on one of his therapists said usually the most change we see after a stroke happens in the first six months.  I've had that in my head for a long time, as if the condition he's in tomorrow will be it and he won't have anymore advances.  I know that's not true.  I think he will continue to improve.  "Lefty" may or may not recover fully, but we will keep working. 

Eli also struggles with his emotions.  He's very stubborn and cries or screams a lot if things don't go his way.  Some of that could be from the strokes.  Some could be side effects from some of his medicines.  It could be signs of post traumatic stress from all the time he's spent in the hospital versus being a toddler at home.  It could be he's a normal three year old who is pushing our buttons and testing his limits.  Or it could be a combination of all those things.  He used to have night terrors but those have been few and far between for the last several weeks.  Other issues we have to deal with are that he still needs to drink more fluids during the day, we'd like him to eat more so we can decrease or eliminate the nighttime tube feedings, we don't know (and won't know for a few years) how much his vision is affected, as well as a few other things.  He is a lot of work but he is worth every bit of it. 

Thank you to anyone who has had any role in Eli's recovery.  From the dedicated medical professionals to social workers to friends and family and coworkers, thank you for everything.  We also want to express how grateful we are that Zachary is the kid he is.  Zachary is the best brother any kid could have.  He loves working with Eli's therapists during sessions.  He is so gentle with Eli and encourages him to use "Lefty" while they're playing, snacking, using the iPad, and lots of other times.  Zachary is a great role model for Eli and a huge help to us at home.  We really try to let him know how great he is, but I don't think he'll ever realize how much Eli adores him.  We're very lucky to have the family and friends we do who took care of Zachary while we had to be in Indy with Eli.  We're also very grateful for his kindergarten teacher who stayed very informed of what was happening with Eli and would offer extra support to Zachary when he needed it.  Our support system has been vital to us and we are thankful for all of you. 

Since Eli's surgery last April, our life has been filled with one struggle after another.  To get through it at the time, you just do what you have to do.  Now I'm starting to realize how much we've endured and I am starting to feel the effects of the last 14 months.  I am incredibly proud of our family.  We are not perfect but a lot of couples wouldn't have made it through times like this.  We joke that we're just too lazy to get a divorce, but in all honesty, that's never been an option.  We're stuck together even if we don't like it all the time!  And God definitely knew what He was doing when He gave us Zachary and Eli.  I really feel like no other four people fit together as well as we do. 

Thank you for all the prayers.  I am asking that you keep them coming because we know they're working!  God bless you for keeping up with our crazy life and remember to cherish Every Little Beat...

Late Night Ramblings from Eli

Hi, everyone.  This is Eli.  I think I'm a night owl these days and Mommy couldn't take it anymore.  She's dozing beside me on the bed and left the computer open so I FINALLY got my chance.  She even left the tv on for me.  Unfortunately she didn't leave it on BabyTV (don't know what that is?  Seriously?  You must be older than five!).  We're watching The Tonight Show with Jay Leno.  It's okay.  I think she was trying to bore me to sleep with the news that was on before it.  That didn't work. 

Now before you say she shouldn't have even had the tv or computer on if she was trying to get me to sleep, let me tell you something:  I am the boss.  Well, tonight anyway.  Daddy tried.  He laid with me for an hour and I didn't give in.  He brought me back downstairs because he needed a break had to get to bed so he could go to work (he leaves early).  We caught Mommy eating a snack so I demanded equal treatment.  Three bowls of Honey Nut Cheerios later I relented to a diaper change and being toted back upstairs.  Then, Mommy tried.  We said prayers, watched a little bit of BabyTV (I'm tellin' you, it's got some of the best shows out there), and then she turned out the lights.  That's our normal routine.  I didn't feel like it tonight, but I let her think that's what was going to happen until the lights went out.  I started crying.  I cried harder & harder until she thought I was going to make myself sick (it happens). 

So, anyway, she tried all these other soothing things to distract me.  She turned on the computer so I could see pictures of me & my family.  I liked that, but it didn't settle me down.  She tried the tv again, but like I said before she tried some boring show.  I'm pretty sure she thought that would work, but not tonight!

Want to know what I think is soooo funny about this?  Well, I know my heart problems are not anything my parents would wish on anyone.  It's stressful.  That's one of the reasons they don't let me "cry it out" too much.  I get sweaty, my lips & fingers turn blue, and I usually make myself sick if I cry too much.  Most of the time we can work it out and it doesn't get to that point, but sometimes I just don't know what I want and I keep crying.  Hey, it's tough to be a baby & figure everything out.  It's even rougher when your body doesn't always allow you to physically do what your mind wants to do.  Which brings me to what I think is funny about this:  My silly parents thought that if there were any type of "advantage" to having a heart baby, it would be that I'd sleep a decent amount!  Aren't they silly?  Last night I was asleep by 10 (gave in too early last night).  I was up by 7:30 this morning which is earlier than my usual.  I took my usual nap today, but I'm still going strong!  Bubba & I played a lot today.  Aunt Kendra was even here and we played a lot.  Mommy & Daddy thought for sure I'd be tired and could go to bed about 8:30.  WRONG!!!!

So, here we are.  Anyone have any questions for me?  I don't know when I'll get the computer back but I'll try to answer them the best I can.  While I have your attention I'll ask you to do some things for me: 

• Keep praying for me and all the babies, kids, and adults who have conditions like mine.  I know you've been praying and I am so grateful.  Please keep them coming. 
• February is Heart Month.  The week of February 7-14 is Congenital Heart Defect Awareness Week.  That's a big deal to us.  My parents have been working hard on some things.  I think Mommy's going to post about that soon so I'll let her tell you what she's been up to, but promise me you'll listen & help out.  It's important to me.
• Become an organ donor.  If you live in Indiana use this link to register.  Tell your family your wishes.  Also, there's a petition going around to make the United States organ donation system an "opt out" instead of "opt in" system.  My family & I think this is a great idea.  It would save a lot of lives.  If someone felt very strongly against having their organs donated they can just fill out a form to prevent that from happening.  If you think this is a good system, please click this link to sign the petition.
• Donate blood.  Please consider donating blood the next time you're eligible.  I've had to receive multiple transfusions after my two open heart surgeries.  One adult donation could possibly be three units to someone my size.  It's a big deal. 

I'm starting to get sleepy now.  It's not as much fun staying up if Mommy & Daddy aren't going to play.  Bubba crashed hours ago....suck up. 

Thanks for reading and check in soon to hear about my parents' plans for CHD Awareness Week!

An Anniversary and Update

Today marks two years since Eli's fist open heart surgery.  Monday, January 10, 2011.  The days leading up to it were a blur of exhaustion, a roller coaster of emotions, and gathering information about our baby that no parent wants to explore.  If we didn't proceed with surgery, Eli would be dead by the weekend.  If he had surgery, he may not live through it.  If he lived through it he might be on a heart-lung bypass machine.  If he lived through all that, we had no idea how long he'd live or what his quality of life would be before he required a transplant.  Too many unknowns and the only certainty was that we had to do something.  This was our baby.  Despite his deteriorating condition we could still see his perfection.

The last few hours before he was taken for surgery were filled with tears and pleading to God that our baby live through the operation.  We were so scared he was going to die.  Of course we were hoping he would live, but our faith was so rocked by the news of his diagnosis that it was hard to be hopeful.  I prayed nicely, I gave praise, I questioned Him, I mentally yelled at Him, I begged, and pleaded, knowing the whole time that God "owed" us nothing.  I finally stopped with the words and just asked God to hear the prayers in the silence of my heart.  Thankfully the plan was for Eli to make it through that surgery (and the other surgeries, heart catheterizations, and procedures he's survived since then). We are so grateful that he's still with us.  We don't know how long we have him so we cherish each day the four of us have together...even when he's playing in the toilet water.  As I was typing this paragraph Zachary hollered for me to help him.  I walk into the bathroom to see Eli splashing in the "just used" toilet bowl.  Now, after a quick bath and change of clothes, I'm rereading those words and already laughing about how Eli chose to celebrate this occasion!  Timing is everything!

It's been a long two years, but the emotions of the days leading up to that first surgery and the time he was in the OR will never leave me.  They seem especially fresh as we are starting some preparations for his next surgery.  Eli's last cardiac check up was in December.  His oxygen saturation was about 75%.  As expected, his levels are slowly but steadily declining.  The goal was for him to reach 25-30lbs before the third surgery and his last documented weight was 25lbs 9oz.   His steady weight gain and declining sats are leading us to think his surgery will likely be this spring.  He's scheduled for an echocardiogram (ultrasound of the heart and its vessels) and and EKG (electrocardiogram, measures the electrical activity/rhythm of the heart).  Those will be done with our Evansville cardiologist in mid-February.  Those results will be sent to our main cardiologist in Indy and they will decide when he needs the Fontan.

We celebrated New Year's Eve 2010 with friends who are like family and were excited to begin 2011 as a family of four.  2011 wasn't the year we expected and was filled with stress, to say the least.  We were ready to say goodbye to 2011 and have a fresh start in 2012.  It was a good year for us, no major medical procedures other than a maintenance heart cath and, most importantly, no surprises!  As 2013 begins, I'm filled with apprehension.  I know Eli will have another open heart surgery sometime this year.  I know more about his condition.  I know more of the positive outcomes and the negative outcomes.  Not only are we on an emotional ride this time, we have more knowledge and that is helpful yet it comes at a price.  And of course we're not only worried for Eli but for Zachary as well.  We've never hidden Eli's condition from him, but it's hard to explain to a little kid.  He's older now and has more questions.  He understands enough to know that it's serious but not enough to fully comprehend what could happen.  It's hard trying to explain the truth without scaring him...or me.

Something that's become more and more obvious to me is that we need more awareness about Congenital Heart Defects.  Most people reading this blog, myself included, were pretty much clueless about the prevalence of CHDs prior to Eli's diagnosis.  Even now, as I do more research, I am shocked at some of the statistics I've come across.  I have shared a few of those with you before and will be doing a lot more soon.  I want to ask that you mark something on your calendars:  February 7-14 is CHD Awareness Week.  I will be doing some things to promote that week.  I'm not doing any fundraisers for it, my goal this year is to simply raise awareness.  I will let you know what we have in store as we make more plans  I want you to put it on your calendar when you finish reading this.  As you're going about your daily life try to mention CHD Awareness to someone new each week as CHD Awareness Week approaches.  My next post will have more information and statistics.  You don't have to memorize it, but just remember something from it that you didn't know before and share it with someone each week.

Thank you for reading, for praying, for all the encouraging comments, hugs, and support we've received.  I'll close with a few pictures of Eli on that day two years ago and now.

Bryan's parents brought Zachary to visit the day before surgery.  Sweet Zachary wanted to lay next to his baby brother before they left.  He wasn't phased at all by Eli's tubes, monitors, and equipment.  Look how young Z looks in this picture!  He was just a baby himself!

A kiss on the head for Eli.  I was so afraid this was the last time my two boys would be together.

A picture of the four of us before Zachary left with his grandparents.  I think we were looking at 6 different cameras because so many people wanted to capture this moment for us (the staff bent the visitation rules for us a little bit).

One of the last pictures of us holding Eli before surgery.  Neither of us slept the night before and there were lots of tears and hugs.  We kept smiles on our faces to keep from breaking down.

Our little hero!  This was taken about 4 hours post operatively.  He was swollen and covered in tubes, monitors, tape, and wires, but we really didn't see much of that.  We were enamored with our strong baby who had fought the odds and was surprising his healthcare team with how well he was doing. 

Eli today.  If you ask him where his smile is he will crinkle his nose and give this huge goofy smile that cracks us up every time we see it.  He's definitely a comedian.

Now go mark CHD Awareness Week on your calendars.  It's February 7-14th.  Spread the word!!!!

So That's a Feeding Tube!

This is a photo of Eli when he turned one.  It's a good shot of his scars and his MicKey button.  Photo courtesy of Reflections by Mindy.

 
People are always curious about his feeding tube.  Some of the most popular questions are about how it works, what exactly do we use it for, how often we change it, does it hurt him, and how long will he have it?  This post is an explanation of why Eli has the tube, how it works, and answers to the previous questions.  So here goes!

Does it hurt him?
No, the tube doesn't hurt him.  It was a surgery to put it in and, yes, he was in pain postoperatively, but now it's just part of him.  He has been playing with it more these days and I know he's going to pull it out on his own sometime, but for now he just touches it.  I don't mind his curiosity, it's part of his body and he needs to be comfortable with it. 

This was the first picture taken of him after having surgery for his feeding tube placement.  If you follow the green wire it runs into the disc that was part of the feeding tube.  It's difficult to see but there's a white tube coming off that disc.  The disc & the tube make up the outer portion of his newly placed feeding tube.  The wires were to monitor his heart rate & rhythm and respirations. 02/14/2011

Why does he have it?
One of the things that led us to seek help prior to his diagnosis was that he wasn't nursing as much as he had been.  We are a family who likes to eat so we knew something was wrong!  After his first heart surgery, the only thing he would allow in his mouth was a pacifier...and only a certain brand at that.  The fact is Eli needed nutrition, he wasn't eating and we had to have a way to get milk into our baby.  Initially, he had an NG (N = nasal G= gastro, meaning a tube inserted into his nose and fed down into his stomach).  It had to be taped to his face, immediately made him look different, had to be changed weekly or more often, had to be checked for proper placement prior to each use which was multiple times day and night, and could easily be dislodged or pulled out by Eli or Zachary (Z was only 3 when Eli had the NG).  Then he started having bloody stools.  It was about two weeks after we got home from his first heart surgery and we didn't know if he had GI problems or if we had scratched him when we changed the tube.  Further testing revealed he had a milk protein intolerance.  While he was in the hospital for that, our cardiologist made a push to get the feeding tube surgically placed.  Bryan and I were on the fence about the permanent need but agreed that if we were going to do it, this was the time.  The GI doctor wanted to do an EGD (a tube down the throat into the stomach to allow the doctor to see the tissues and take samples for biopsy) and colonoscopy (a tube up the rectum and through the intestines for the same reason)  and Eli would need to be put out for those.  Since he was going to be under anyway it was the perfect time to place the feeding tube.  Our decision was made and we have not had one regret since. 


How long will he have it?
I don't know.  Some parents whose little ones have feeding tubes are very anxious to get them removed and I understand that.  It's not a natural part of your baby.  It's a visual reminder that something is wrong with your perfect child.  Bryan and I weren't thrilled about getting it in the first place, but once we did we quickly realized how much better it is for Eli.  We are not in any hurry to get rid of it.  He had stopped requiring tube feedings for several months, but is now needing them again.  We're so glad we have that access.  As long as the hole stays healthy and the surrounding skin doesn't have any breakdown, we're much more content to have the button and not use it a lot than to be rid of it and need it again. 

How did they get it in there to begin with?
It was a surgery and it took two doctors.  One was our pediatric GI (gastrointestinal) Dr. Maisel and the other was a pediatric general surgeon Dr. Kokoska.  Dr. Maisel had the scope in Eli's stomach for the EGD and found the spot for the G-tube from the inside.  By the way, at this point it was called a G-tube meaning gastric tube (gastric = stomach).  Dr. Kokoska found Dr. Maisel's spot from the outside and made the incision where Dr. Maisel wanted it.  It took two of them because the internal organs in babies that small are very close together and they didn't want to inadvertently puncture other organs.  Remember, Eli was under 10lbs at this point.  At first it was a long tube about 18 inches in length that led to a disc on the outer part of his belly.  The pictures below were taken throughout the procedure and show what it looked like on the inside.  He kept this tube for almost two months.  Have you ever had your ears pierced and had to keep the original piercing studs in for a few weeks before you were allowed to change them?  This is the same concept.  Once the hole had time to form a tract, he was put under anesthetic once again so that tube could be removed and his new button put in place.  It's called a MicKey button and it's what you'll see in later pictures.

Photos given to us by the doctors who placed his G-tube.  Image 2 notes point out his liver and his stomach.  Image 4 notes say "stomach" and "pulling PEG tube".  Doesn't he have the cutest little internal organs ever?!?!

How often do we change it?
Monthly or more often if necessary.

What necessitates a change?
 -if the tube is pulled out
 -if the tube is blocked and we can't get anything to flow through
 -if it's getting visibly dirty/gunky.

Who changes it?  Where is it changed?
We change it.  We do it at home, usually on the changing table in his room.  We carry an extra kit in our van in case we have to while we're out sometime.  Bryan and I have always done it together but one person could do it alone.  It's easier with two because one can occupy Eli while the other gets it done.  The whole process takes less than 5 minutes.  Some people have asked if we're allowed to change it because I'm a nurse while other families would have their doctor do it or go to the hospital.  No, I'm not Eli's nurse, I'm his mommy.  We were taught, as his parents, to do this regardless of our occupations.  

Shouldn't this be done in a sterile environment?
The initial surgery was done in a sterile operating room, but since then it's been what's called a "clean" procedure.  When it was converted from the larger tube they placed during surgery to his current MicKey style button, that was in a procedure room, not a sterile OR.  Each of his new kits is in sterile packaging.  We wash our hands and keep the whole process as clean as possible by laying him on a clean blanket, only touching what we have to, and keeping his hands away.  Stomach contents are not sterile like other organs.  He probably gets more germs from what he puts into his mouth than from us changing his button. 

Here's what you've all been waiting for.  Here's how we change it and use his MicKey button. 

This is the kit for his new MicKey button. 

We use good ole KY jelly (or the generic!) on the stem of the button to make insertion easier for him.  So if you see me buying it by the case at WalMart, that's why.  Yeah, that's why. 

This is the new button.  I'm holding it upside down so you can see the stem that will be inserted into the hole in his belly.  The bottom part is actually the button that stays on the outside of his body.  There's a "balloon" that goes around the stem and gets inflated with water.  That's how it stays anchored inside his belly.  We have to test the balloon prior to inserting the button to make sure it's intact. 

Here's the balloon after I filled it with 6ml of water (slightly over a teaspoon).  It doesn't look like it here, but this balloon only goes around the stem, not over the end of it.  The end is open so that his medicines and formula can flow through.  The balloon is like an inner tube around the stem.  The narrow area between the inflated balloon and the bottom of the button is 1 centimeter in length.  That's the part that goes along the tract that was formed between the outside and inside of Eli's belly.  When we reorder his buttons from the pharmacy we specify a 14 French (has to do with the diameter of the tube) 1 cm.  As he grows, the diameter shouldn't change but the depth probably will.

Here's a different syringe attached to the button that's currently in place.  We have to deflate this to take it out.  It could get pulled out with the balloon inflated but that would hurt and possibly cause some tearing around his hole.  It could happen, but so far he hasn't pulled it out on his own.  We hope he doesn't, but I bet if he does it once he won't do it again.  Once we pull the water out of the balloon the whole button just lifts out. 

A view of the hole after his button is removed.  We clean it every day and apply some ointment around it to help keep the skin in good shape, but when we change his button it's a good opportunity to really clean it.  We just have to be fast because this is a direct opening into his stomach.  Yes, gravity is a factor here.  If he rolls to his left side very much we may get some stomach contents to pour out.  Don't worry, I didn't take any pictures of that.  Incidentally we make sure to keep food & drink away from him for about an hour before we do this!  Let's just say we've learned the hard way :)

Another view of his button hole.

The new button is in place, the balloon filled, and the syringe removed.  The new button stem just slides into the hole, we inject the water to fill the balloon and remove the syringe.  He's done!

Here's the tube we use to access his button.  The end of the tube has a little piece of plastic that sticks up.  That aligns with the notched area on the face of his button.

The black line on the access tube shows where the notch is.  Line that up with the line on the button indicating the place for the notch and....

...turn clockwise just shy of a full turn.  That locks the tube into place and makes it "become one" with the button.  To remove it, simply reverse the process by turning the tube counterclockwise until the black lines line up.  Then just take out the tube and replace the doo-hickey rubber piece over the button opening so that other stuff doesn't get in there.  The button has a one-way valve inside so things shouldn't leak out once they're in, but if it's been used for a while we may get some occasional leakage (another indicator that it's time to change the button).

This is the tube we took out.  As you can see, it gets dirty, gross and gunky. 

It's very hard to see, but there's a small pinpoint opening at the bottom of this stem.  That's what all his meds, formula and water pass through into his stomach.  Even if we aren't using his tube for medicines or feedings we still have to flush it with water two times a day just to make sure that tiny opening doesn't get clogged. 

A view of the whole tube we use to give him feedings and medicine.  A close up of the white part on the right is shown in pictures above.  The left part is the head of the tube which has two ports.  In the middle is a clamp.  In this picture the clamp is open.

The larger port on top is for feedings and the smaller one coming off the side is for his medicines.  They feed into the tube the same way, they're just different sizes for different syringes to attach. In the background you see a syringe that is full of water.  The syringes that fit into his feeding tube are called a "slip-tip."  Some people assume we mean a syringe that could also hold a needle (like for a shot) but these just have a little tip on the end that fits into the port.

The slip-tip syringe fitted into the medicine port and filling the tube.  We prime the tube with water prior to attaching it to his button for any feeding or medicine.  Otherwise we'd be pushing a bunch of air into his belly and make him burpy or even sick.  After the medicine or formula is in we flush the tube with water before detaching it from his button. 

Here's his nightly line up:  Prilosec (to help decrease stomach acid), a daily vitamin (tablet is crushed up & mixed with water because he won't eat them yet), Captopril (helps his heart function), and the water flush.  The clamp on the tube is closed to hold in the water. 

Eli has started helping with his medicines.  He'll put his finger on the plunger and help us push it in.  He's half asleep in this photo.  You can see how it's hooked up to his button and the medicine syringe is attached.

Some people want to know how we keep it straight.  Most of the time it's pretty easy because his meds are pretty consistent.  Two of them he takes twice a day, his vitamin is everyday, and he gets half a baby aspirin every other day.  We do that one on even dates only 2nd, 4th, 6th, and so on).  If a month has 31 days then he will he will have his aspirin the 30th, miss the 31st, miss the 1st, then have it again on the 2nd.  Otherwise it gets too confusing!  I created an Excel spreadsheet with his meds, their purpose, the amount & dosage, how many times a day he gets each one, a list of "as needed" meds & their dosages (Tylenol, Dimetapp, etc), and a place to mark Zachary's daily vitamins.  I printed that and cut it to fit into an 8x10 frame.  We use dry erase markers each day for the date and times we give him the meds.  There's room to add additional info we have for the day.  For example, he's on an antibiotic right now so it's written to the side with its times given.

A look at our daily board

The first picture I took of our daily board being held by our lovely model.

That's all there is to it.  When we were still in talks about going the G-tube route it seemed like it would be a lot of work and a big deal, but it isn't.  We just made it part of our routine and hardly even think about it.  It's so convenient to be able to give Eli his medicines and feedings.  We don't have to wake him if something is due when he's sleeping.  We don't have to fight to get him to take multiple meds multiple times a day.  He takes some by mouth, but when he initiates it.  We figure he's going to be taking medicine for the rest of his life so why make it a negative experience for him?  Using the tube became so normal to us that I messed up when Zachary was on an antibiotic for the first time.  He was 3 1/2 and had been sick enough to require an antibiotic.  It was liquid of course and supposed to be given every 8 hours.  I gave him his first dose as soon as we got it from the pharmacy which was about 4pm.  Next dose at midnight, right?  Well, midnight rolls around and I wake to my alarm ringing, go to the kitchen, measure it out and go to his bedside.  Only after getting him to roll onto his back in his sleep did I realize he didn't have a feeding tube to put it through!!!  I felt soooo stupid.  It wasn't a momentary lapse of intelligence, it was an 8 hour lapse during which time I just assumed the act of giving Zachary medicine would be as easy as doing it for Eli.  I didn't wake him but we just changed our schedule to be more realistic for him the next day. 

I hope this answers some questions for anyone who has wondered about this.  Again, the invitation is out there for you to ask anything you've wondered about Eli's condition, how we handle it, etc. Use the comment section on this blog, use Facebook, or email me at jessveale@yahoo.com.  Thanks for reading and remember to cherish Every Little Beat...

MERRY CHRISTMAS!

Merry Christmas!  Hope each of you had a wonderful holiday.  The boys definitely made our lots of fun, just like they do for everything!  Our Christmas lasted for four days.  We decided not to rush things so we didn't open our gifts until the 26th.  It was really nice to do it that way because the Blizzard of '12 hit about 4am so we had a white Christmas!!!

When I sent our Christmas cards this year I included business cards we had printed for free with VistaPrint.  The business cards were advertising this blog in an effort to increase our reader base.  The ultimate goal is to spread awareness about CHD using whatever means we can utilize.  If you're reading this because of one of those cards, thank you.  Please keep coming back and, more importantly, help us spread awareness about Congenital Heart Defects and its prevalence.  I'm not going to go into any statistics or facts right now because this post is about our wonderful Christmas, but I promise I will be posting more in the future about the need for more awareness and research.  Thank you for visiting and please become a follower so you can receive notifications when we publish a new post.

***FYI:  Someone recently told me they receive an email notification of each new blog post, but can only view the text, not the pictures.  As far as I can tell, if you want to view the photos you have to actually be on our blog, not reading through your email.  Open a new tab and type in www.thevealefamily.blogspot.com and you should be able to view any post you want with the pictures included in that post.  Thanks again!

Here's a whole lotta pictures from our Christmas festivities.  The pictures and their captions tell our story.  Enjoy!

Wednesday 12/19/12, Zachary's Preschool Program:

The four of us at Zachary's preschool program.  The kids did a wonderful job entertaining us.  Zachary's favorite parts were playing air guitar while they sang "Rockin' Around the Christmas Tree" and eating the yummy cookies after the program. 

Zachary waving when he found us in the crowd (and let me tell you, it was a large crowd!)

Zachary with his teachers, Ms Carrie and Ms Angie. 

My Aunt Shirley was there to watch her great granddaughters who are also in Zachary's class.  She borrowed Zachary's Rudolph antlers and even let me get this picture.  Everyone was feeling festive!

I took a turn with the Rudolph antlers, but Eli didn't know what to think!

Sunday 12/23/12, Christmas with Jessica's family:

We started our Christmas celebrations on Sunday the 23rd.  The four of us, my mom, my sister, her boyfriend and his son came to our house for pizza and our gift exchange.  Here my mom is opening a gift from Josh who had her name.  He claims he knitted the sweater inside the box. 

Eli and Zachary were thrilled that Aaron was at their house.  They don't get to see each other very often and Aaron was a good sport about looking at everything they each had to show him.  Eli said Aaron's name about 7 times/ minute.  Eli was fighting a cold which made his drooling even more pronounced as evidenced in this picture.

Ashley had Bryan's name and got him a Tyler Zeller Cavaliers shirt.

I had my sister's name and got her a new crock pot.  She's exaggerating her excitement a little in this photo.

Aaron is a huge San Antonio Spurs fan and his room in Ashley & Josh's new house is a Spurs theme.  Bryan had Aaron's name and we made him a body pillow for his bed.  We've never attempted a craft like that before and were very pleased with the results.  We're pretty sure Aaron liked it too.

The letter to Santa Zachary wrote at school said he wanted "some paints, paint brushes and stencils."  We didn't know what he meant by stencils.  Ashley found out Santa had other things for Zachary so she got the paint supplies for him.  Josh kindly put the easel together for us (with a lot of help from the boys).  When Z unwrapped the box containing the easel he yelled "My stencil!!!"  Mystery solved!

Zachary and Aaron hanging out.

Zachary preparing for Santa's visit.  He came to our house on the 24th because I had to work Christmas Eve night.  I wasn't scheduled to be off until 7:30am Christmas Day, but as a nurse you're never guaranteed to be out on time so we decided to ask Santa to come a day early.  He's such a sweet guy and immediately agreed to help us out. The sack Zachary is holding was made by Bryan's Aunt Donna.  She made two for us, at Santa's request.  Our boys are very lucky and have a lot of toys.  Santa started a new tradition this year by asking them to put some of their toys they don't play with anymore into these sacks and leave them with his milk and cookies.  Santa emptied out the sacks and took those toys to children who didn't have enough to play with, leaving the sacks for next Christmas.  It worked well and Zachary has already found more to put in his sack for next year!

Monday 12/24/12, Santa's Visit:

We left our stockings on the table with the sacks and milk and cookies.  Zachary insists we leave chocolate milk for Santa every year.  Santa left a letter thanking them for the snack and especially for helping him out by giving him some of their gently used toys. 

Our tree with Santa's gifts.  From left to right:  a bean bag chair (for Eli), an Imaginext Dinosaur and a metal detector (both for Zachary) and a wall of cardboard bricks (for Eli).  I specified which boy each gift was meant for, but in reality they both play with everything!

In our garage checking out the final gift from Santa.....a 7 1/2 foot air hockey table!!!!  Santa said it was too big & heavy for him to bring in and we don't have a good spot cleared out for it yet.  Guess what I'll be doing in the next couple weeks?!?!?  We can't wait to get it put together :)

Eating cinnamon rolls the morning Santa came.  He was making silly faces with the icing smeared on his lips.

 

Stopping to say "Cheeeeeessssseeeeee!" while playing with his new goodies!

Zachary was so excited to use his stencil (easel) and paint a jungle picture.  He's a pretty good artist.  I don't have a picture yet of the finished painting but it has a lion and a cheetah in it.  He says he wants to add a gorilla.

Tuesday 12/25/12, Christmas with Bryan's family:

Zachary pointed out that our nativity scene was missing a star for the Wise men to follow.  I told him I didn't have one and he immediately set out to fix that!  I like our new addition to the scene.

Christmas Day!  This is a photo of Bryan's sisters & cousins.  Front row:  Ashley (sister), Alexa (cousin) holding Zachary, Tammy (cousin), and Kendra (sister).  Back row:  Bryan holding Eli, Amy (cousin & Alexa's mom) and Cara (sister) holding her daughter Alyssa (niece).  Yes, Bryan is the only male grandchild, not only on the Rayman side, but also the Veale side.  I am the only female "outsider" to come into this family in 40 years!  The next will be when Zachary or Eli marries (another 40 years!)

Alyssa was given a rocking chair but there was a bit of a struggle over it at times!

Some of the people & presents at Bryan's parents' house.  It was a crazy mess of paper, gifts and laughter!

A Dinosaur Train blanket made for Zachary by cousin Amy.  Eli received a Mickey Mouse one. 

Eli decided to skip out of the party for a few minutes.  When I found him he was in Alyssa's carrier playing with her stuffed animals. 

The boys were given a copy of Madagascar 3, complete with crazy wig.

Just a super cute picture of my first born!

This is Granny, Bryan's grandma.  It was surprising she even put the wig on, but downright amazing that she let us photograph her....and with a smile!

Sweet little Alyssa was one of the best gifts for our family in 2012.

Wednesday 12/26/12, Our Christmas:

 

Opening a shared gift.  It's so cute how well they work together

Zachary took this picture of us.  We're holding the package he made for us at preschool.  The package was decorated with a beaded candy cane and had a card with his school photo and a sweet message.  The gift was a book about Christmas.  "What Christmas sounds like, what Christmas smells like, what Christmas tastes like, what Christmas looks like, and what Christmas is really about."  Very sweet gift.  Thank you to his preschool teachers for organizing such great surprises for the kids to give their parents.

Gift opening time out to read one of his new books.

Another Imaginext dinosaur!!!!  He discovered them before Christmas last year and received 5 or 6 then.  New ones came out this year and he got 3 more.  He plays with them multiple times a week and takes pretty good care of them because they're so special to him.

Reading to Eli from his personalized book about his adventures with Sesame Street characters.

Zachary was very excited to open the walkie-talkies he'd seen in the Toys R Us magazine.  He & Bryan had a lot of fun with those in the evening.

Albert is the biggest kid when it comes to presents.  He loves to open his and it's quite funny to watch.  I'll have to find a video and post it sometime.  You just have to see it to believe it.

My three guys, part of our Christmas mess, and some awesome smiles.

Eli loves to "daw!" so we got him a doodle pad. 

Eli's very own backpack!  Or "baa-paa" as he says.  He loves Zachary's backpack so when we saw this Elmo one that was just his size we knew we had to get it for him.  It has different snaps, ties, zippers, buttons, etc to help him learn how to do those things.  For now he just likes putting things in it and wearing it around the living room.

This is me & Albert by our pine trees in our backyard.  Albert played in the snow for a while but being a short-haired indoor dog he doesn't last a long time in the snow.

A picture of one of our snow covered pine trees.  There's a whole line of them in our backyard that's visible from our back door.  I absolutely LOVE looking at them every time it snows.  Our little bit of country in the city.

We hope you all had as wonderful a Christmas as we did.  Please check back soon for an update about Eli's health and upcoming appointments.  Thanks again for reading and remember to cherish Every Little Beat...