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...

Update and an Invitation

Happy New Year!  We had a quiet holiday.  We're not big partiers anyway but were just glad to all be together.  Both boys had colds over Christmas.  Zachary got over his easily but Eli's lingered throughout the new year.  In fact he developed an ugly barky cough and we had to get him into the doctor to make sure he wasn't developing a respiratory infection.  Fortunately, Dr. Amy discovered his throat was red and covered in white patches.  We think his lungs are clear.  He's tricky because he's had pneumonia before that we couldn't hear but just happened to find on x-ray.  He's on an antibiotic now and hopefully is better in a few days. 

The new year always bring about excitement for what's to come.  I don't know if I'm as excited for 2013 as I was for 2012.  We were definitely ready for 2011 to end since it was such a trying year for us:  Eli was unexpectedly diagnosed, had his first (and hopefully ONLY) helicopter ride, two heart surgeries, two feeding tube surgeries, a heart cath, two other hospitalizations (pneumonia and stomach virus), two EGDs, a colonoscopy, multiple echos, blood draws, therapy appointments, etc.  We were ready for that year to end so we could start as fresh as we could.  2012 was good for us.  It was calm.  We didn't have any major unexpected situations.  As we start 2013 I feel some apprehension for the upcoming year.  We know Eli will have his third open heart surgery months before he sees his third birthday.  We're smarter about our situation now and have done more research about it.  The good side of that is we won't have as many surprises.  The flip side is with the research we hear more of the negative outcomes.  Of course we're hoping and expecting the best, but we wouldn't be normal if we didn't admit to some fears. 

Something I've wanted to do with this blog is to get more feedback from those of you reading along.  Your comments mean so much to us.  Even through 2012 when we didn't have any major issues, it was so nice to feel your support and concern.  Thank you to everyone who takes the time to read this.  Along those lines, I've wondered if there's anything you'd like me to write about?  Do you have any questions for us?  Feel free to ask anything, I'm pretty hard to offend!  To get your question or comment to us use the comment section below, use Facebook, or email me at jessveale@yahoo.com  Please let us know what you'd like to read or have just been curious about with Eli or any of us.  I'm already working on a post about Eli's feeding tube because that is something most people don't understand. 

I look forward to your questions and comments.  Again, thanks for reading and we hope each of you have a blessed 2013!!!